Lupus and Hypothyroidism

When I started this blog in July of 2009, I said I would occasionally talk about my two medical conditions, Lupus and Hypothyroidism.

It is now January 2010 and I have hardly ever mentioned them.

I do not like to talk about having these conditions simply because I feel like I’m giving the impression of “poor me, please have sympathy for me”. And that is SOOOOO not the case.  The only person that I converse with about my health obstacles is the Hub. And sometimes I feel really sorry for him. We talk about it a LOT.

 

But I digress.

It occurred to me to write this page during a particularly bad lupus flare. I was also struggling with my hypothyroidism medication, so health-wise, I was going through a little ordeal.

While I was going through this “ordeal”, it occurred to me that I have this blog, and its express purpose is for recording the many facets of my life. BUT, I never mention the illnesses that affect my day-to day life so heavily. Not only that, but I have acquired quite a bit of knowledge about both, and this would be a great way to possibly help others that share my conditions.

 

So, I give you this page.

I don’t like talking about these things on a daily basis at all, but I feel that it should be acknowledged.

Here I will list symptoms, helpful websites, and mostly, how I have been affected by both diseases.

 

 

Hypothyroidism.

I was diagnosed with this first, so that is where I will start.

In 2003 (or was it 2004?), I was finally left with no choice but to schedule an appointment with the doctor. I had been having recurring migraines, and they were massive ones. However, one morning I woke up with a migraine, and I could NOT make it go away. No amount of medication or rest would help me. I spent several days like this before I was able to get in to see the doc.

I had been having other problems too. Very dry skin, brittle hair and nails, dizziness, complete inability to loss weight no matter what I did, overly cold, extreme muscle weakness, and my goodness, I was SO tired all the time. And my memory was just awful. So much of my life has been deleted from my mind because of this condition. Only in the past couple of years has my memory started to improve. 

With the exception of the migraines and the dizziness, I was so accustomed to all my other symptoms that I did not even realize I was experiencing them until the doctor asked about each one specifically. That’s just the way life was for me.

I was put on the generic form of Synthroid, which is called Levothyroxine. I didn’t have much luck with it, but that could have been due to the fact that my body was still trying to regulate itself. I asked my new doctor (the last doctor was a quack) to switch me to Armour Thyroid. Armour is an all-natural alternative to the synthetics. Do not misunderstand when I say “all-natural”. It is not a vitamin or herbal supplement. It is all-natural because it is made from the thyroid gland of pigs. (A bit strange for a person that doesn’t eat meat.) I had major success on this drug. It is definitely my prescription of choice. That is what I have been taking for the past 5 years. However, due to a problem with the manufacturer, there was a brief period of time when I was forced to switch back to Synthroid. My symptoms started to resurface, and I was not feeling well at all on the synthetics. Luckily, after some time, I was able to locate a pharmacy with Armour. Armour is definitely the only way for ME to go. Please note that not all people may have the same benefits I do on this drug. It is entirely possible for someone else to thrive on Synthroid even though I did not.

So, all of that aside, I still haven’t explained what hypothyroidism is.

 

The thyroid gland is part of the endocrine system.

 

All of these glands produce their own hormones that play a mandatory part in regulating the body. And they are all tied to each other in some way. If one doesn’t work properly, it causes problems throughout the entire body. Actually, a doctor told me that since the pituitary gland has control over the other glands, it is entirely possible that Hypothyroidism can be caused by miscommunications from the pituitary. But, really, that was just speculation.  Entirely plausible, but still speculation.

The thyroid gland produces the hormones T3 and T4. When the thyroid gland malfunctions, so to speak, and is not producing enough of these hormones, the thyroid gland is considered underactive. (There is also hyperthyroidism, in which the thyroid gland produces too much hormone. One of the results of this is a very fast metabolism. I don’t know why I couldn’t have gotten THAT condition. :-()

 

Symptoms of an underactive thyroid…..

  • Coarse and thinning hair.
  • Dry skin.
  • Brittle nails.
  • A yellowish tint to the skin.
  • Slow body movements or sluggishness.
  • Inability to tolerate cold
  • Raynauds disease
  • Constipation
  • Low Blood Pressure (Also called hypotension.)
  • Fatigue and/or excessive sleeping
  • Muscle weakness and/or poor muscle tone.
  • Memory problems, depression, or difficulty concentrating.
  • Heavy or irregular menstrual periods that may last longer than 5 to 7 days.
  • An enlarged thyroid gland (goiter).
  • Weight gain, or inability to lose weight
  • Swelling of the arms, hands, legs, and feet, and facial puffiness, particularly around the eyes.
  • Hoarseness.
  • Muscle aches and cramps.

I literally had every symptom listed with the exception of yellow skin.

Also, it is not uncommon to continue to have some symptoms even though blood-levels are in the normal range after taking medication properly. I still struggle with a form of hypotension called “Orthostatic Hypotension”. Coldness and muscle weakness are a problem for me too.

Having low blood pressure is kind of the bane of my existence. Yes, low blood pressure is a good thing, but not when it causes dizziness, lightheadedness, and sometimes fainting. I’m not medicated for this, for a few reasons, but I plan on discussing this matter again with my doctor. For now, though, I treat this by eating a lot of salt in my diet. This is by no means a cure, but it definitely seems to help the condition. If you have (or think you have) low blood pressure (hypotension), you can learn more about that here.

 

But I’m digressing again.

 

To determine whether or not one has hypothyroidism, a simple blood test is performed. If diagnosed, it can take months (and months) for ones body to regulate itself. That is considering, of course, that a person is taking the proper medication and also taking it correctly.

Finding the proper dosage of medication can be a less than fun ride too.

 

Pay close attention to me here. If you have been diagnosed with hypothyroidism, please do not think you can simply take vitamins or herbs and everything will magically go away. That, my friends, is very stupid. Your body is lacking some very important hormones. Hormones. Taking vitamin C and ginseng is not what you need. You need to replace the hormones that your body can not make.

Granted, there are many supplements that are thought to help SUPPORT your thyroid, but only support. That is not the same thing as treatment.

 

I have a few books on Hypothyroidism, but this one is my favorite.

 

Now, I haven’t bought or checked into new books on this subject in a very long time. There could be a much better one out there. But, this one has worked really well for me. It has many great tips on trying to lose weight while also battling this condition. I highly recommend it.

 

The author of this book has a pretty good website. But I confess to not having visited it in a while. Check that out here.

 

On the topic of hypothyroidism and weight-loss, let me just say that it is a struggle. If you are on the proper dosage of your meds, and you are cutting calories and exercising, you will lose weight. But, you are probably going to lose it at a slower rate than normal. Which is very, VERY, frustrating. If this is happening to you, I feel you. I understand. It sucks.

 

Really, once you have been diagnosed, started your medication, and your body regulates itself, the condition isn’t that bad at all. You just have to stay on top of it.

 

 

_______________________________________________________________

Lupus.

This one is the big boy.

I was diagnosed with this about 6 months after the thyroid condition.

 

(Because some of the information I have found on the internet is so easy to understand, and already put together for me, I am going to do a lot of coping and pasting. I will indicate all copy and pastes with an asterisk *)

 

Also, upon writing and researching this section on Lupus, I learned some very disturbing information about symptoms I have been having and what they could mean. I do believe it is time for a trip to the specialist. :-)

Here we go……

 

There are 4 types of Lupus. I am only going to talk about one. SLE. Systemic Lupus Erythematosus. This is the form that I have. It is also the most common form.

*Lupus can range from mild to life-threatening and should always be treated by a doctor.

*Lupus is a chronic, autoimmune disease that can damage any part of the body such as skin, joints, and/or the internal organs. 

 

*In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

 

So, that’s that. In layman’s terms, my body will attack various parts of my body, healthy parts, because my immune system thinks it is a foreign object that needs to be destroyed.

 

A person with Lupus is prone to experience flares, and then remissions. (This is like a person with Multiple Sclerosis experiencing a relapse.) During a flare, all the symptoms one normally experiences become worse, and can dramatically hinder day-to-day life.

 

Lupus can affect any part of the body. Keyword there is ‘ANY’. We are talking everything from eyes, skin, bones, internal organs, brain, nervous system, teeth and gums, blood, lungs, EVERYTHING. Nothing in your body is safe from Lupus. To see a full list of how lupus can affect all parts of your body, click here.

 

I am going to list some BASIC symptoms of lupus. But before I do, I want it to be known that I seriously considered not adding this information. I still don’t know if it is the best choice. Here is why…

Every case of lupus is very unique. There will never be 2 people with lupus that share identical symptoms. And since ANY part of the body can be affected, it is a very hard disease to diagnose. One person may have joint pain and skin rashes, while another may have high fevers and fatigue, and then ANOTHER person may develop jaundice or autoimmune hepatitis (because lupus attacks the liver.) Or, a person can have ALL of these.

So, here is a very short, very basic list of symptoms.

 

*The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. But, in general, lupus signs and symptoms may include:

  • extreme fatigue (tiredness)
  • headaches
  • painful or swollen joints
  • fever
  • anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
  • swelling (edema) in feet, legs, hands, and/or around eyes
  • pain in chest on deep breathing (pleurisy)
  • butterfly-shaped rash across cheeks and nose
  • sun- or light-sensitivity (photosensitivity)
  • hair loss
  • abnormal blood clotting
  • fingers turning white and/or blue when cold (Raynaud’s phenomenon)
  • mouth or nose ulcers

When to see a doctor
If you develop an unexplained rash, ongoing fever, persistent aching or fatigue, see your doctor.

 

 

Here is a personal side note:

Notice that so many of these symptoms are also symptoms of hypothyroidism. Sometimes I don’t know if a symptom I am experiencing is because of Lupus, or hypothyroidism. But usually in the long run, I count on my thyroid medication to be doing its job and I credit any symptom I may be having to lupus.

 

 

* Some of the more serious complications involving major organ systems are:

  • inflammation of the kidneys (lupus nephritis), which can affect the body’s ability to filter waste from the blood and can be so damaging that dialysis or kidney transplant may be needed
  • an increase in blood pressure in the lungs (pulmonary hypertension)
  • inflammation of the nervous system and brain, which can cause memory problems, confusion, headaches, and strokes
  • inflammation in the brain’s blood vessels, which can cause high fevers, seizures, behavioral changes,
  • hardening of the arteries (coronary artery disease), which is a buildup of deposits on coronary artery walls that can lead to a heart attack

 

Here is a link to a very good informational video. (It’s only six minutes). Click here.

 

 

So,  you have some basic information now. Considering that,  I know I told you that no 2 cases of lupus are the same, but I am going to tell you how lupus has affected me.

 

My flares are not always the same, but the symptoms I usually experience are as follows:

*Extreme fatigue.

During a flare I can literally sleep for 11-12 hours a night, and then be exhausted again only an hour after waking. I spend several days doing almost nothing but sleeping.

*Joint pain.

The joints that ache varies. 

*Small rashes

*Muscle pain and weakness.

(Muscle pain meaning that every muscle from my neck down aches.)

*I become the village idiot.

Problems with memory, confusion, and the inability to talk like a normal, coherent person. But I really just chalk this up to feeling bad. Doesn’t everyone have this problem when they are feeling sick?

*Sore throat or throat infection.

During a flare, I sometimes get a sore throat. It will either go away on its own, or it will worsen, and I need to get antibiotics. My tonsils and lymph nodes become enlarged. Eating is a pain. This one may be the most annoying, because it can leave me with no choice but to go to the doctor.

*Headaches.

This is not something that happens just during flares. I still have a problem with migraines. However, since having my baby, they haven’t reared their ugly head. (Envision me now knocking on wood.)

*Fever

This is a new development.

*Lightheadedness. (I can not believe my spell-check is accepting that word.)

*I lose weight.

Ummm, yeah. I have no complaints about this one. Hell, I LIKE this one.

*Bladder infections.

This doesn’t happen too often. I have only gotten a few with my flares.

 

My flares seem to last about a week. I am actually very lucky for this. Flares for some people can last for months, and some need to be hospitalized.

For me, though, the first 3 days are always the worst. I sleep A LOT. This is when I have the fevers and headaches as well. The remaining week, I am careful to take it easy because my body is still ‘sensitive’. My joints still hurt, I could still be battling a sore throat, and I tire easily.

 

Now, here is the most important thing I can tell you about Lupus.

Stress is BAD for Lupus. BAD. My flares are ALWAYS onset by stress.

Mental stress, emotional stress, physical stress. BAD, BAD, BAD.

 

When I was first diagnosed my doctor she told me I shouldn’t work, I shouldn’t go to college, and I shouldn’t have any more kids. (Because of the stress factor) Since then, I’ve done all three. :-) Sorry doc. Quality of life and all. :-)

 

 

 

Something I find very interesting is that my thyroid condition could have caused lupus, OR the lupus could have caused hypothyroidism. It’s impossible to tell which occurred first, even though I was diagnosed with an underactive thyroid first. (Merely because it is easier to detect and pinpoint.) I think it is more likely that Lupus caused hypothyroidism.

 

Okay, I think I have went through all the information that I wanted (listing everything I know about lupus would take up way more time and space than I have, but I’ve covered the very basics), so here is some resources for you.

First, this book.

lupus

 

It is the only book I have purchased. I like it. It’s great. (The only reason I have not bought more books is because the internet is a really great resource for people with lupus.)

The author of this book has a website. Portions of the book are there for viewing. Click here. (The author looks like Kathy Bates!!!)

 

The most useful place for information is the Lupus Foundation of America Website (LFA). It is an absolutely wonderful site. Any information that I copied and pasted into my blog came from the LFA site.

 

 

So, all of that sounds kind of dramatic right? Well, here’s the deal.

It’s not.

I have a flare, I deal with it, I move on.

I’m not depressed that I have these conditions. It’s not ruining my life. I don’t wallow in self-pity. I am soooo not that kind of girl.

I am by nature a very happy person. It is not easy to get me down. I like to play the cards I’m dealt instead of pissing and moaning that I got a bad hand. I know WAY too many of those people. The world doesn’t need another one.

Life is what we make of it. I choose not to be upset by this crap.

I eat healthy (most of the time), I exercise, I go to the doctor, I take vitamins and herbs, and I try to get plenty of sleep. I do what I can to take care of myself, and then I leave the rest up to God.

Besides, I feel there are much worse diseases in the world. Like cancer. If I could chose to cure Lupus or Cancer, you can bet your sweet butt I would choose to cure cancer a million times over without even once considering lupus. (I can say that because my condition is still relatively mild. If it ever becomes more severe I may sing a different tune.)

 

 

 

I will update this page from time to time as I think of new information I would like to see displayed here. If anyone has questions, please feel free to ask. Just remember that I am not by any means a doctor. :-)

 

 

One more thing…

I rarely mention these conditions in my day-to-day posts, but when I do, I always tag those posts with either “Lupus” or “Hypothyroidism”. If you would like to read any of those posts, just search my tags.

81 thoughts on “Lupus and Hypothyroidism

  1. Angelique says:

    I’m glad you wrote this.

  2. Sarah says:

    Is it common to have both hypothyroidism and lupus? I’m 23 and I’ve had hypothyroidism for about 2 years. My ankle joints started swelling and became very painful about 1 1/2 months ago. Two docs told me it was gout even though my uric acid levels were normal but one doc sent me to an orthopedist who is currently testing me for lupus. It’s kinda hard not knowing what is going on. I’m trying to be upbeat but at the same time I’m trying to search for answers.

    • Penny says:

      Hi Sarah. Well, I can’t really say how common it is. I don’t personally know anyone but myself that has both conditions. However, all of my medical books do say that a person can develop one condition because of the OTHER condition. All of my doctors also say that since so many of the symptoms overlap, it’s impossible to tell which one started first. It’s pretty much the chicken/egg scenario. I too have a problem with swelling in my legs, ankles, and feet, but it is impossible to pin-point which disease is causing it.
      I hope you find some answers, and I really hope things improve for you. Please let me know if I can answer any questions for you at all.

      • Kris M. says:

        Hello bird of my feather. I have both of yours, I’m 34, fit and learning to navigate both Hashimotos Thyroid and Lupus. I’m glad you wrote this… I’m struggling with being a “Type A” go-getter and learning to “relax” which is a dirty word for me… So I just wanted to pop in and say hi and let you know I’m glad your blog exists.

  3. Marriette Hanson says:

    This report is very well done. Informative and easy to read. I admire your positive attitude. I’m in a big flare right now that has lasted about three weeks despite Prednisone. So, I”ve been cranky and occasionally throw myself a pity party. But, I’ll try to adopt your amazing attitude. Keep up the good work.

    • Penny says:

      Marriette,
      It sounds like your case of Lupus is more severe than mine. I appreciate your extremely kind words, but I have to say, a flare that has lasted 3 weeks would get anybody down, positive attitude or not. I feel for you girl. Hang in there. I will keep you in my thoughts. :-)

  4. Jenn says:

    Im so glad I found this blog. I have Hypothyroidism and hoshimoto and multi nodular goiter. I have been not feeling well at all, extreme joint pain, very tired, and am a graphic designer and struggle everyday finding my thoughts and creative juices. Just feel lost. I am very curious if I could have lupus as well. I am not sure what to ask the doctor as I never have great luck with one doc. So frustrating. Thanks so much for sharing your thoughts and advice. good luck to you.

    • Penny says:

      Jenn,
      So sorry it has taken so long for me to reply to you. I have been away from my blog for a while.
      I am terribly sorry to hear about your conditions. My goodness, you are really going through it. I know EXACTLY what you mean about the creavtive juices not flowing. Sometimes I’m positive I am the dumbest person in the world. :-)
      I know what you mean about doctors. When you have several overlapping conditions, it seems the doctor gets a bit flustered by the patient. Of course, that’s a mild way to put it. :-)
      Best of luck to you, Jenn. I hope things improve for you.

      • Jodie says:

        I was diagnosed with Lupus and underactive thyroid several years ago.
        Thanks for all the info you put up.
        Mine started with fatigue and stayed nauseated and my joints arms, hips and legs hurt sooo bad I still cant sleep. You feel like you have a bad case of the flu, and it leaves you weak, draggy and sometimes hard to concentrate.
        The worst for me is getting up to get my son off to school, There are mornings that I cant do it, and he stays home.
        Nobody understands the fatigue the panic attacks and the tirdness.
        But you know what I never complain to anybody I dont let my kids know I am sick, I tell them mommy is laying down to relax.
        No matter what you tell people nobody understands and they will think you are a hypercondriac.
        I keep it to myself and pray everyday for GOD to give me strength.
        Best way to fight this is to make yourself not think about it.
        I know its there I know why I am tired, but I do what I can and if I cant then I cant.
        I pray for everyone going through this.

        • susan says:

          Just sittin here dealing with a flare up and thought i would stop by to say hi. Your life sounds almost identical to mine except i have Graves disease(hyperthyroidism). Trust me when i say,losing the weight at such a dramatic pace is not all what u think it may be.Having to overeat just to maintain some weight is grueling but then when your hormones get straightened out,guess what. The appetite is accustomed to high calorie meals so its a up and down race but i am maintaining. The joint pain and fatigue has become my enemy. I work in a hosptal so i am standing most of the day so by the time i leave work i can barely walk.It has gotten so painful i am contemplating going out on disability but being a single mom of four,not sure we could survive.The posts here have been very encouraging because my family really take me for a joke when i’m in bed for days at a time with fatigue.This blog has been very impressive and detailed and i am printing out copies to give to my family members just to reinterate what i try and educate them on about this disease.I pray we all conquer this dreadful condition.

          • Tracy says:

            Lord have mercy!

            I feel for all my fellow lupies. I am going through a pretty good flare myself. I was dx’d with lupus in 2011 and hypothyroidism in 2012, I really believe I had my first flare 10+years ago. Anyway, before those two were dx’d, I was already dx’d with bilateral avascular necrosis of the femerol heads, and that means there is no bllod supply getting to my hip bones, and once they collaspe, I will have to have them replaced. I also imflammatory arthritis is all my major joints and spine, bare with me, not done yet. I have bilateral sever femoral patella syndrome ie jacked up knee caps, will need those replaced too, I have advanced ddd and need a lumbar fusion, not to mention lumbar facet syndrome, can you say pinch nervers in back and neck!

            Hmm let’s see oh let’s not even talk about the nice rashes I get. Bree my butterfly is with me everyday, and if I am in the sun too long, I can hang it up. I have tongue sores, this is new, so eating is just a joy, my head hurt so bad that sometimes I want to trade it in for a new one, but at least my cold eye masks help with that. Ok where was I oh yea that’s right I can barely remember my name some days, and then there are all these lovely meds I have to take on a daily basis, but I won’t torture you anymore by listing them. What I will say is thnk God for sites like this and the LFA, at least you can vent to others that understand. One more thing, I did have to retire medically, and if any of you are thinking about it I say go for it, I know everyone is different, and believe me I am type A B and C ( tri-stepper, use to teach real color seminars) it was very hard to make the decision, and it has not been easy, but I refuse to give up, I know God got my back! Sorry this is so long, I just wanted to share a piece of my world and hope to touch someone, so guys if you know something is wrong, cause we now our bodies better than anyone, and you are playing the horrible game of being dx’d, don’ t give up, there are doc’s out there who care, and another source of info, if you read this long post is the American College of Rheumatology. Be blessed, and don’t give up, and thanks for this wonderful outlet.

        • Jeanie says:

          I know exactly what you mean. No one understands my illness. I’ve had Lupus since I was very young but it always showed itself as JRA and the I was in remission for 10 years. When it came back after I had a few really stressful years it showed itself as depression and anxiety attacks, later thyroid issues and now I think it’s going after my heart. Too bad for me as I’m on Medi-cal and the doctor I’ve seen has not tested to prove Lupus only that my thyroid is off. I’m out of breath doing practically nothing (used to be supper active) my heart races a million miles and feels like it is missing beats. I have some days ranging from 1-3 days where I cannot really do anything because I’m just to dizzy. Since my whole mental depression and anxiety my relatives think I’m a hypercondriac. I’ve got a binder that lists all the research I’ve done but no one listens. On many days I welcome death but it isnt here yet.

          • melanie says:

            i feel exact same way as you!!!!no one beleives how bad i feel.i get breathless just going to bathroom(like you,i was very active)but it been going on for so many years without a diagnosis..finally just started to get some test where bloodwork shows lupus…it sux..i lost my hair overnight..BTW thyroid noormal..

        • I feel like I wrote every word here….wow even getting my son off and him missing school. I have lots of kids and grandkid yet I think even though I was bed ridden for five years and have a horrable time walking cause of the pain in my joints, I’m still struggling with no one to understand and Drs not sure yet if it’s MS or lupus…lol it’s so obvious I have lupus rash all over my arms and hands and several parts of my organs have been damaged to an extent and I’m slowly deterating while Drs argue as to yes I do and no I don’t…..God bless all out there for being there for people who can’t find the understanding they need nor the right Drs…you helped me understand me…

  5. beth mchale says:

    Hi Penny..your blog has been the most informative and helpful one I have read.I have had hypothyroid for about 10years and for the most part been ok.however now Im losing my hair and have developed gout which is very painful.Have you heard of anyone with both of these conditions developing SLE.

    • Penny says:

      Beth,
      First, please forgive my long delay in responding to you. I have been away from my blog and didn’t realize I had comments.
      Second, thank you very much for the compliment. This lupus & hypothyroidism page is (I feel) the best thing I have ever wrote on my blog. Hearing that it is helpful to you really makes me happy.
      Third, I have read that gout can be associated with hypothyroidism and lupus. Also, I strongly feel that when a person has hypothyroidism (or lupus especially), they have a life long possibility of developing any number of conditions. The body is always changing over time. The diseases themselves can change, which can cause shifts in the body to occur, making one develop just about anything.
      BUT…I AM NOT A DOCTOR. :-)
      I am truly very sorry for your conditions. I know they can make life miserable. I wish you the very best of luck.

  6. Trudy says:

    Hello
    Love this page. I was about to get started on my regular “scare myself to death by Google-ling my symptoms” habit when I came across you – you’re straight talking, and give an honest account of how life is for you.
    I’m 38, was diagnosed with hypo about six months ago, seeing a specialist in a couple of weeks to check out other things i.e. Lupus (TSH? levels are coming down, but other results are “off the scale…”). Family history, similar symptoms etc etc.
    I just want to get some decent treatment and get on with my life, like starting a family (yes, I knoooow I’ve left it late…) with my gorgeous fella. Life is way too short to spend the time worrying and not doing anything about it.
    I will return… xx.

  7. Ann says:

    HI! I also have Lupus (diagnosed in 1999) but I am sure I started wayyyyyyy before that date! I was recently diagnosed with hypothroidism and am taking the typical thyroid medicine- along with hydroxychloroquine -since 1999!

    I have gained weight (mostly stomach) , have basically ALL of the symptoms of Lupus and Hypo– loosing my hair,fatigue,Shogrens syndrom,lupus lesions (fairly recently),dry skin, RA symptoms in my joints (fingers,knees,hips etc.,) vision problems, memory problems,
    etc,etc!!!! I am also blessed with a husband who thinks I am making this all up!!!!!!!!!!!

    It seems no one who has not experienced this hatefull malady understands (or cares to) what “we” are going through or the implications of this all encompassing disease!

    I could go on , but those of you who are experiencing this “thing” know what is what! I just wish that there was more research and possibilities to help diminish the effects of this hateful disease!!!

    • Jeanie says:

      Check out the drug LDN.
      In the developing world, LDN could provide the first low-cost, easy to administer, and side-effect-free therapy for HIV/AIDS.Naltrexone itself was approved by the FDA in 1984 in a 50mg dose for the purpose of helping heroin or opium addicts, by blocking the effect of such drugs. By blocking opioid receptors, naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: beta-endorphin and metenkephalin. Many body tissues have receptors for these endorphins and enkephalins, including virtually every cell of the body’s immune system.

      In 1985, Bernard Bihari, MD, a physician with a clinical practice in New York City, discovered the effects of a much smaller dose of naltrexone (approximately 3mg once a day) on the body’s immune system. He found that this low dose, taken at bedtime, was able to enhance a patient’s response to infection by HIV, the virus that causes AIDS. [Note: Subsequently, the optimal adult dosage of LDN has been found to be 4.5mg.]

      In the mid-1990′s, Dr. Bihari found that patients in his practice with cancer (such as lymphoma or pancreatic cancer) could benefit, in some cases dramatically, from LDN. In addition, people who had an autoimmune disease (such as lupus) often showed prompt control of disease activity while taking LDN.

      How does LDN work?

      LDN boosts the immune system, activating the body’s own natural defenses. Up to the present time, the question of “What controls the immune system?” has not been present in the curricula of medical colleges and the issue has not formed a part of the received wisdom of practicing physicians. Nonetheless, a body of research over the past two decades has pointed repeatedly to one’s own endorphin secretions (our internal opioids) as playing the central role in the beneficial orchestration of the immune system, and recognition of the facts is growing.

      Autoimmune diseases. Within the group of patients who presented with an autoimmune disease (see above list), none have failed to respond to LDN; all have experienced a halt in progression of their illness. In many patients there was a marked remission in signs and symptoms of the disease. The greatest number of patients within the autoimmune group are people with multiple sclerosis, of whom there were some 400 in Dr. Bihari’s practice. Less than 1% of these patients has ever experienced a fresh attack of MS while they maintained their regular LDN nightly therapy

  8. janice bloodworth says:

    hi I have just read imformation on lupus and hypothyroid I was first
    told i had lupus sle when i was 17years old in 1979 the last five years I have gained four stone and have tried to get doctors in uk to
    connect lupus with thyroid i am now on levothyroxine but only low dose not enough as i am nearly fourteen stone why are doctors reluctent to acknowledge the link with thyroid disfunction and lupus
    and I have struggled with limited success for over thirty years to get a better quality to my life any comment would be appreciated.thankyou.
    j bloodworth uk

  9. Cecilia says:

    I too have both conditions. I was diagonosed with hypothyroidism when I was about 25 (I’m now 47), and with Lupus the year I turned 40, even though I was having all kinds of problems for at least 15 years before that (from anemia to pancreatitis to kidney problems) and no one could find out what was wrong, and sometimes I thought I was going crazy.
    I have been taking synthroid since I was diagnosed and it has worked fairly well for me, although recently my dosage was increased. The Lupus is pretty well controlled by Plaquenil and I have been lucky not to have to take steroids. Sometimes I still struggle with heart palpitations, headaches, IBS, Rynud’s, Sjogren’s, vasculitis and several other problems, but considering where things could be, I think Im doing fairly well, and believe it or not, I miss a lot less work than many people with normal health.
    I guess we just have to take it one day at a time, and try not to worry too much. There are a lot worse things out there.
    Take care

  10. Misty XoXo says:

    Hi Penny,

    My name is Misty and I was diagnosed with SLE a year or so ago… I randomly googled “cold nose” because I always have a cold nose and hands and feet and whatnot and hypothyroidism came up and I found your blog. I also have a lot of other symptoms for it! Lupus has caused so many problems in my life and I won’t be surprised if it turns out I do indeed have hypothyroidism. I hope to get a blood test soon. Thanks for your info! Feel free to check my site out and join the Facebook page… there are a lot of people there who are great for support. :-)

    -Misty XoXo

  11. Georgie says:

    Mary Shomon’s book is the first I have read (out of a LOT of books) that tells the whole truth about hypothyroidism, as experienced by a patient who has been there. I wish that every doctor that treats thyroid patients could be made to read this! So many doctors seem to think that hypo is a simple, easily treated disease, and it isn’t. They also tend to focus on individual symptoms without looking for the overall CAUSE. If I had had this book years ago it would have saved me several years of suffering and being told there was nothing wrong with me. Mary’s list of symptoms is very thorough, her book is easy to read and understand, and it tells the real truth. I especially like the way she pays attention to the emotional impact of this disease and the depression that often accompanies it. Her weblinks are very helpful in finding out more information. This book is EXCELLENT, and a great resource. It can literally change people’s lives. I could barely put it down once I started reading. I can’t recommend it enough, especially for newly diagnosed patients or those who SUSPECT they are hypo but haven’t been able to find a doctor to test them. Mary’s list of symptoms is great to take to your doctor to help them see the overall picture, and her compassion and understanding are very comforting and empowering for patients. She makes sense out of what to most of us is a very confusing disease. If you only buy one book on this subject, make it this one!

  12. Sara says:

    I have a co-worker with Lupus and a friend. I did the Lupus Walk in Richmond, Va. last year. I’ll be thinking about you!

    • Penny says:

      Sara,
      Thanks for all your great comments. You seem like a sweetheart. :-) I hope you stick around on my blog. :-)

  13. joodep99 says:

    Hi , Found you when trying to see if my SLE and hypothyroid were linked . I had discoid lupus for 14 years not much problem then about year ago progressed to SLE . Saw my rheumatologist 6 weeks ago who said i had borderline hypothyroidism . Went back 6 weeks later and my TSH through the roof and un recordable fee thyroxine and was told that in those 6 weeks my thyroid had almost totally packed up . In middle of flair at mo so i can understand what you go through . Am taking levothyroxine sodium so i don’t know if that is generic or a brand but the muscle pain i think is the hardest . It is hard to explain to anyone that just typing this much and my wrists feel like they have written a book they ache so much .
    Don’t really know that much about this thyroid part but reassuring hearing that it will settle when the dosage is right .
    I think some parts of hospital and general doctor care are quite different over here so which versions of pills i don’t get a choice with
    Luckilly (??????) i have bipolar as well and the steroids for SLE have made me manicish so i can laugh at it over last few weeks , as you say there has to be worse .
    I will definately look up the book about weight loss as i’m piling on weight at mo and hard to find something to fit and in uk radio saying today we will have a record hot summer ERR yipee not !
    Thank you for taking the time to write this as it has just made me feel alot less isolated with it as i don’t know how to start to explain to people .
    I hope your flare has settled and the summer goes well
    juliet

  14. Kimberley says:

    Your posting has helped me SO very much! I’m just at the beginning of this journey and still don’t know for sure what is going on with me (had bloodwork done last week – waiting for the results) but I know it’s something. I’ve always had a great memory and NEVER get sick – EVER! I have two kids who have had everything under the sun and I’ve had it all spit, coughed, puked and breathed on me – never got sick. Two weeks ago I had four days of fever, body aches, migraines, exhaustion…followed by an all over body rash. My right hip and shoulder haven’t stopped hurting since and just yesterday I noticed my fingers swelling (esp. the middle finger of my right hand). I sleep A LOT. I have ZERO motivation or energy to do anything. Sex drive – what is that?
    We’ve been under A LOT of stress with trying to sell then renting our house and buying another. I’m thinking the vacation we took a few weeks ago, the release from all that stress, and snapping back to reality is what triggered all of this. Or the environmental shift from TN to SoCal back to TN. All I know is it all started to get REALLY bad after vacation.
    We shall see what the doc says – hopefully I’ll find something out early this week. I NEED answers. After reading your posting, I’m 99.999% sure it is hypothyroidism and/or lupus!

  15. Nell McCaslin says:

    Thank you for writing this. I, too, have both lupus and hypothyroidism. I totally understand why you are hesitant to write about your lupus and hypothyroidism. When one has a chronic condition that they live with constantly it is easy to “become” the disease and let it takeover your life.

    A little over a year ago I started eating gluten free and this has helped with my migraine headaches and seemed to reduce my body aches. I recently followed a cleansing diet using Standard Process products and feel great. As I am slowly adding new foods into my system I am discovering what contributes to body aches and headaches. Unfortunately, sugar is a trigger. The swelling in my ankles has been minimal this summer which I attribute to a new protocol of supplements and herbs along with a very healthy diet.

    I was diagnosed with lupus about seven years ago but developed the hypothyroidism more recently. I decided to hold off on taking Synthroid because my internist prescribed it and I want to first see if my new protocol affects my T3 and T4 levels plus I want to run it by my rheumatologist first. I have read and been told by others that I should also be tested for thyroid antibodies. Auto immune and endocrine issues are extremely complicated. The female’s organs seem to lie in a delicate balance and when one is unhealthy the others become weak and malfunction also. Holistic doctors suggest that I am suffering also from adrenal exhaustion due to a lack of cortisol and an imbalance of other hormones.

    I’m still trying to weed out the connection of the gut to hormonal and inflammatory issues. I’m confident that there is definitely a connection especially when it comes to adrenal and thyroid health. Some theories are that people with autoimmune issues develop a leaky gut where small particles of food enter your body through the intestinal wall. Their bodies react to this food as an invader/virus which triggers an overreaction of the immune system.

    I believe there is a place for the traditional medicine and drugs but I also believe there is a place for alternative therapies. Methotrexate and Plaquenil both helped me when I was suffering severe symptoms but the dietary changes, supplements and herbs seem to be helping me get past the plateau I reached in my day-to-day health.

    I’m looking forward to reading the rest of your blog and learn your attitudes on food and nutrition. If you are interested in reading another book on hypothyroidism, I recommend
    Why Do I Still Have Thyroid Symptoms? by Datis Kharrazian, DHSc, DC, MS.

    • Penny says:

      Nell,
      Thank you for your very knowledgeable comment! :-)

      I, too, strongly believe in alternative, or holistic, remedies. However, it has been my experience that there is no replacement for taking the thyroid hormone. I would love to hear of you doing the same if it was prescribed by your doctor. I think you would feel so much better. If you’re thyroid levels are low, it can truly affect everything in your body. And, I know that ankle swelling is a huge symptom of hypothyroidism. I had it as well, but it rarely happens anymore since I have been medicated. As with my absolutely terrible headaches.

      I do hope that me offering my opinion on this does not upset you. I just want you to feel good. I know how appalling both conditions can be.

      Also, I have been suspicisous of my adrenal functions as well. This can also be related to hypothyroidism. If one gland decides to be difficult, they can all follow suit.

      I do hope you’ll keep reading!! Thank you Nell!

  16. Maria says:

    Hello Penny,

    Thank you so much for taking your time in posting your experiences. I was diagnosed with Hypothyroidism my senior year of college, I was 21. Like you synthroid does not work for me and Armour is the way to go!!! But now that my thyroid is under control I am not feeling at my 100% potential. I am now 26 yrs old and every test I undergo is pointing to Lupus. What I find the most interesting is that until I brought this up to my mother I did not know that many of the women in my Huge (over 25 aunts and uncles) have battled a thyroid problem, Lupus or both.
    Your blog has brought some clarity and has given a new boost of energy in my hopes of finding the right diagnosis.

  17. Arlene says:

    Very informative blog. I’m 58 yrs old. I’ve had Lupus since 1993. Recently diagnosed with hypothyroidism. On Synthroid as well as plaquinil & coumadin for Lupus. Husband passed away in winter of 2010. Extremely stressful time, plus planned my son’s wedding for July 2011. Got through all of this drama but developed substantial hair loss: eyebrows & frontal hairline. Dermatologist suggested cortisone shots at hairline. What do you think? Anybody reading this blog had that particular treatment? What about the eyebrow treatment? Any suggestions.

  18. Thanks so much for sharing all of this. I am seeing my third endocrinologist next month to learn if he will reconsider treating me for hypothyroidism. He said last visit that a 3.5 TSH was not high enough; and that he wanted to see something in the 4 to 5 range. I was diagnosed with SLE last year after a four year ordeal runnning from ologist to ologist and being repeatedly told many things: “Don’t come back; you don’t have what I treat.”, “Must be the menopause from hell.”, “I don’t think you want to be a team player.”, “I don’t see what you’re seeing.”, and my all-time favorite, “Here’s some cymbalta because you need to be the best person you can be.” In February 2011 I went again to the second rheumatologist that I saw in October of 2007. My husband had to literally beg his receptionist for an appointment for me as I had literally given up all hope of ever getting diagnosed. He looked at me with distain and asked me why I came back to him of all people because he only treats very sick people with very strong medicine and I am not one of them. I told him that my husband choose him because he felt that I was dying (I did, too, but I just resigned myself to the fact and didn’t care anymore). The doctor told me that he believed it was a waste of time, but he would run a few labs and sent me off with the lab order and a very exasperated look. I cried all the way home and didn’t have the tests done right away. Why bother, I thought. The following Monday afternoon the phone rang and it was the doctor telling me he needed to see me. I told him I had made a follow-up appointment when I came to see him. He said, “No, I have to see you today. Please be here at four o’clock. I have your lab results.” He had everything laid out on his desk when I got there: High ANA by IFA, Low C3, Low white blood cells. I knew right way that it was SLE because of all the reading I had been able to do between medical appointments for the last four years. When I saw him the first time, he told me to buy some Nioxin shampoo on the internet; get on with my life and that he wasn’t the doctor for me. This time, he wrote a prescription for Plaquenil and sent me back to the lab for a boatload of tests. He told me the best that I can hope for is a remission. And I finally was able to tell him, “Looks like you really were the doctor for me.” So sorry for the long rant; but the point is DON’T GIVE UP, WHATEVER YOU DO!! From everything I have learned over the last several years, the ANA /IFA is the “gold-standard” when it comes to lupus testing; and if you have to literally beg for this test, then beg, and beg again if you have to. Life as I used to know it is just that; but now I am so thankful because I know the reason for all of my symptoms and that at least I have some hope by taking the medication. Life without hope is the worst thing in the world.

  19. Jan says:

    Thanks for sharing your info. I was just dx with hypothyroidism even though my hematologist thought I had it over a year ago. My internist didn’t think the numbers were high enough, even though I had all the symptoms. Well, finally last month my TSH was well over 5 and she prescribed Levothyroxine. My Rx plan won’t cover the one you use. I’ve only been on the Rx about 28 days and I have to do a follow-up blood draw tomorrow to see whether the Rx is having any effect. I was dx with cutaneous lupus as well as relapsing polychondritis and iron deficiency anemia. The rheumatologist is waiting and watching the first two and the latter I received an infusion of iron in May. Later this month I have an appointment with the hematologist to see whether the infusion has helped and whether I’ll need another infusion.
    I, too, try not to share too much with others about the conditions, but sometimes I just need to be able to vent and since I don’t have a HUB with whom to share, it helps to find a place like your blog where I can learn and share. Thank you so much.

  20. Pier says:

    First I would like to say thanks for this blog! I am 22 years old…I was just diagnosed with SLE Lupus. Earlier this year, I was diagnosed with Hyperthyroidism. However my thyroid symptoms are those of a person with hypothyroidism. Last year I was diagnosed with PCOS as well. I take about 5 different pills a day now. I’m nervous about this Lupus diagnosis. I don’t have rashes. However, I do have chronic fatigue, major migranes, aching joints, shedding hair, confusion, sore throats/ tonsil stones, weakness, cold sensitivity, Raynauds. I don’t know many people dealing with conditions like these, which is why your blog really helped. My father has skin lupus…however when I told him about my diagnosis, he said “welcome to the club” which was no help at all. I’m normally fun, life of the party person, but lately hanging out isnt really my thing. I’d rather sleep. I’m soooooo happy i came across this….feels good to be in a community where people understand….thanks again!

  21. Virginia says:

    so helpful reading all this!

  22. archana says:

    hy penny can i talk with u personnaly coz i m also dignoaed with thyroid n sle

  23. Maggie says:

    I was diagnosed with hypothyroidism back in 2010. Now recently I have been having all these various symptoms that made my doctor wan to check me for lupus. Blood work came back positive and now I am scheduled to meet a specialist this upcoming week on Friday. I would like to ask what should I expect? I am kind of nervous with all the information I have found on various websites and do not want to continue looking to scare myself more. I know my doctor told me that the test could be a false positive and it is hard to diagnose lupus and there is a lot of bloodwork involved. He did say that if I do have lupus, I have been in a kind of remission stage I guess where I have not had a real bad flare up. I have had the dizziness, headaches, UTI’s, tiredness and honestly never thought of all these symptoms to be related to lupus. Any advice you can give me on what to expect would be great. I really enjoyed reading your blog and being a mom, wife and only 24 I find it in a crazy way comforting to know I am not the only one in the world going through something like this.

  24. Hawna says:

    Thank you for sharing your experience. I have hypothyroidism and have shared many of the same symptoms. Since I found out I had it 5 yrs ago, I eat all organic now and it helps regulate my thyroid. I got hypothyroidism from the Depo birth control shot.

    • Kris M. says:

      Hawna, hi! I think I got hashimotos from the depo provera shot as well… ?! After that shot everything went south and within 5 years of it, I was diagnosed with SLE. ? I have heard this from a lot of women… wow. I have never heard anyone else say it out loud.

  25. Natalie says:

    Hi Hawna,

    In reference to your comment about getting hypothyroidism from Depo Provera, I wonder how many other women affected have taken this or the Pill and if so which Pill, I strongly believe there is a link here as I have hypothyroidism and have started suspecting I have lupus as well. I’m assuming that messing with our hormones with synthetic hormones found in the Pill and other methods of birth control have a lot to answer for, I wonder how long they conducted their tests on birth control before offering it to women?

  26. mary says:

    hi i wish i could be as up beat as you. ive been dealing with muscle and bone pain for over two years. my shoulders started to burn really bad and then my lower back down my legs. its so bad at night time i cant sleep. and during the day all i want to do is sleep.my thyroid is at 50 tens times what it should be.ive been on meds for a year with no relife.ive been to the er so many times they find nothing.ive went to three diff dr.and one found the high thyroid.but iam still feeling tried all the time. I say its something more.Iam 50 years old and lost my husband two years ago due to cancer.I took care of him for ten years 24 7 so when i lost him i felt like i aslo die with him.We were together 28 years. Ive been under so much stress since then and so depressed i lost all interest in my family grandkids and friends.nobody knows how bad i feel.Like i want to feel bad all the time and enjoy all the pain. I just want my life back and to feel normal again. I have no life living in my bedroom. I tried taking my life in march.cause i couldnt get nobody to find out want was wrong.They say i have PTSD.STRESS DEPRESSION AND HIGH THYROID.well then why dont i feel better a year in a half later? with all the meds they put me on that i cant afford.

  27. priscilla ware says:

    I’m having a lot of the lupus symptoms but in nervous to go to the Dr or talk to anyone

  28. La Reina Harris says:

    About 5 days ago I had a small rash that turned into a rash on my arms, legs, back, neck. The rash was extremely itchy, no drainage. I’ve been super tired but that’s not that rare for me, body aches; elbows, knees, back. I have Djd, spinal stenosis l4, l5, oa knees and back, anxiety, and bipolar depression, all which I was diagnosed three years ago. I go to visit my doctor’s office, doc wasn’t there that day so I saw the NP who said it was a viral rash and “we just try to get rid of the rash”. I explained the fatigue, oh and vertigo diagnosed six months ago, itchiness, and feeling hot then cold a lot. She gave me a course of prednisone, triamcinolone cream and benadryl. I still feel like something is not right.

  29. Christine says:

    I recently was diagnosed with SLE, hypothyroidism & adrenal fatigue at 50 & considering all the symptoms I have am certain it has been slowly building up over many years, even as a child I had cold hands, feet & nose, dizziness, fatigue, yellowish skin etc etc. It has taken all these years to work out why I had unexplained episodes of being unwell. I would get what felt like a flu but without any mucous buildup. I stopped asking the doctors as they didn’t know & weren’t interested in finding out. After being so sick I couldn’t go to my desk job blood test no. infinitive showed a positive anti-nuclear antibody result. I have to give up stress apparently, which would mean giving up my job, which would cause lots of stress…..at least I know now I actually do have a physical condition, it was always distressing that others might have been thinking I’m lazy or just making it up…..good luck everyone,

  30. Beth says:

    Can you please tell me what tests they used to diagnose you with lupus? I have so many symptoms of both hypothyroid and lupus but are characteristic for both. I am curious how they came to conclusion. Thank you so much for your blog and your positive outlook is amazing!

    • Penny says:

      Beth…..
      Honestly, it’s been quite a long time ago now that I was diagnosed with both conditions, and I can’t remember at all what tests were performed to diagnose me with lupus.
      I’ll tell you all I remember……

      I had hypothyroidism for quite some time (I think about a year) when I went in to my doctor for routine bloodwork. This bloodwork was to check my thyroid levels and to make sure my prescription was doing it’s job. When the results from my blood came back, he told me that I needed to schedule an appointment with a specialist, because there were indications that I may have lupus. I went to see the specialist, did more bloodwork, and sure enough, I had lupus. I have no idea what the tests were called. The diagnosis was quite simple for me, though I know some people and their doctors really go through the ringer before nailing down lupus.

      Thank you for your kind comment Beth!!!! I wish you luck!!

  31. Debbie says:

    Over forty years ago I was diagnosed with hypothyroidism. I had no symptoms. I moved a few hundred miles away and changed doctors. When he checked my thyroid my blood tests didn’t show anything wrong with it. I have changed doctors a lot since then and I make sure my records go with me now. For the last 25 or 30 years I have had almost every symptom of hypothyroidism and when I ask the doctors to check it out nothing shows up. Last week when I went to the doctor for some reason she had them do blood work and my TSH was 7.085. I have been on Levothyroxine NA for four days. How could these numbers hide for so many years? For the last several years I have thought that I may have Lupus. I know many of the symptoms are the same for these two diseases but the reason I started thinking this is because I have this rash that covers my nose and cheeks that won’t go away. I also developed chronic pancreatitis five years ago and wondered if it could be caused by either of these. I am sixty years old and am in pain everyday. I have no medical insurance so I go to the VA Hospital or all of my medical needs. Thank you so much for this blog.

  32. Danielle says:

    I enjoyed what you had to share. I related with it very well. Especially about being overly dramatic just because you have to live with an ailment. No,you didn’t say it those words, but hopefully you can see I relate. I haven’t been diagnosed with Lupus. I have been tested more than once. I am one of those people that live with undiagnosed ailments that leave our medical providers with nothing else to do but test, refer, and medicate/treat symptomatically.

    I noticed this page hasn’t been addressed since 2010. Are you no longer blogging? I ask, because this was a comforting read. I’m not a blogger. I’d get bored too quick. But, for those that do really bring to those of us that don’t. So, when you blog about the ins and outs of your medical condition it brings something to those of us that also suffer with an ailment. Please keep blogging about this, if you still blog. I found comfort in knowing someone else can live and feel like crap too! O, and I also only complain to my husband, a LOT too! :) ….. Many Blessings to You

    • Danielle says:

      I just noticed that the replies start from your last and end at your most recent. So, ignore that 2010 comment, please. My Bad!

      • Christine says:

        As far as I know they diagnosed lupus as a result of anti-nuclear antibodies being found in my blood. There appears to be a relationship between thyroid, adrenal glands & lupus. I was only diagnosed with hypothyroidism because I searched the net & found evidence of people only being given standard tests & being told nothing was wrong even tho they had all the symptoms. I went to a compounding chemist, asked them which doctor’s they use & made an apptmnt with that doctor. He sent off for more specialist testing & I was diagnosed, since being on the medication symptoms I’ve had for decades have disappeared.

  33. nilsa says:

    hey im just curious as to how you are feeling now? & also i have been diagnosed with hypothroidism and its been 3 years but now i just got an ana screen done that turned out positive 1:640 high.. i know youre no dr but do you this the hypo condition can cause this high titer level.

    • Christine says:

      They seem to me to be linked, probably what causes it all in the first place is high levels of body stress emotionally, psychologically and physically. When related organs/glands are put under long term stress and miss out on nutrients often there’s a chain reaction. I’m better atm but am tired, I recently changed to a really healthy diet and just left my really stressful job so will see.

  34. Mario says:

    Hi Penny,

    Thank you for your words on your experience. It makes me feel like I’m not alone.

    I cannot say officially that I have thyroid issues or Lupus or some auto-immune condition but it sure feels like it. I have been dealing with this for several years and I always feel like I am going crazy. I seem to have many of the symptoms you have listed. I feel like I have a ‘flare up’ of these symptoms every once in a while. I have seen several doctors, a neurologists, an endocrinologists and had blood work, electric shocks, MRIs and CAT scans.

    My neurologist (that I was seeing for migraines) found that my T4 levels were elevated so I went back to my primary doctor who confirmed this. He sent me to an endocrinologist who said that even though my levels were ‘slightly elevated’ that everything seems ‘within limits’ and that everything looked normal. She had me go for nuclear medicine and there was an ‘possible nodule’ on my thyroid. She said that it was nothing unusual and to keep an eye on it if I start to feel bad again. She also said that “hey, you’re not dying so try to enjoy life” Thanks Doc.

    I do not know how else to explain the migraines, the muscle spasms, the itchy sensitive skin, the random excruciating pain, etc. etc. As well as the feeling that I am dizzy or on drugs sometimes.
    The point is, today after feeling like a flare was coming up, I threw in the towel. I have made another appointment with my primary doctor for an hour next week. I have every intention of exhausting my resources to get at the source of this. I do not want anything to be wrong with me, but if there is, I want to know what it is so I can deal with it.

    Thank you for you blog!!!!! I will be checking back!!

    Mario

  35. laura says:

    Just wondering if anybody has heard of this problem? My sister has just been diagnosed with hypothyroidisum and they have put her on a low dosage of levothyroxine as they are worried about her kidney function which seems to be working on half mast, she has had scan on kidneys and this showed no damage so they are doing further test but in the mean time they wont up her meds to sort out the thyroid which her levels are still well out. My mum hasscared us all to death googling saying she may have kidney disease!! Im hoping that her kidneys arent functioning properly as her thyroid levels are still out?? Any advise would be much appreciated as we arenew to this and are all worried!!!

  36. tina says:

    Wow is all I can say
    I have been struggling with being so ill since October 2012- they (meaning the 7 different doctors I have been seeing)- I was first told I had whooping cough, then crazy flu going around then in December lab test showed elevated liver panels- I was told to stop drinking alcohol ( of which I replied politely as I could ,I have not been drinking nor do I any way), i am taking antibiotics at this point from Z-pak, Ceftin to clindomycin, but the brillant Dr’s thought that might be my problem. The DR could not explain why I was experiencing low grade fevers, night sweats , joint pain sore thoats and a persistent cough that felt like my lungs were coming out of my rib cage yet clear sticky sputum, and my blood counts all show normal no sign of infection( although viruses can do this). I had severe breakouts all over my face, head, ears, back and some down my neck- they thought it was part of my acne( of which i was taking MINOCYCLINE since 2008 and differin topical) but these breakouts were very blistery cystic and was not responding to the my normal treatments- I ended up in emergency room Dec 28th, with the most swollen sore throat , joint pain, immobile from my neck down, I could not even pull my sweat pants up or make it to the bathroom , after 7 hours , where they could not find anything wrong with me except elevated ANA and liver panel, gave me prednisone(60 mg/day) and Norco and sent me home. Polyarthargia unknown cause.
    Next day I felt like nothing ever happened. Absolutely back to normal- night and day
    I have had hypothyrodism since 2002, taking synthroid everyday. I have continuously gained weight for over three years( 50+lbs, record what I eat, even though I participate in bootcamp three days a week. So as of this week I have two appts with two differnt Rheumotologist to confirm my primary Dr diagnosis”drug induced Lupus” from taking monocycline for acne for so long.
    I keep having flares as soon as I start lowering the dose of the prednisone I get the debilitating joint pain and muscle fatique, sore swollen throat and my neck is so sore I cannot even turn it to look over my shoulder when I drive. I have missed so many days of work I am so afraid I am close to being fired. I am still tryng to figure out what is triggering the flares- I stopped taking all antibiotics since January, it is now March, I have been able to lower the dose of Prednisone to 10mg /day any lower and the symptoms return within a few hours. I have had all allergy testing done to see if i have sensitivities to dairy, soy, wheat, corn, dust mites, asprin, acetomeniphen, etc… and other allergen panels. all negative. I have ahd additional Rheumatoid tests, Raynauds , SJ all negative, DNA negative only posiitive is the ANA titer. LIver panel returned to normal, my skin looks like I should be quarrantined. I am 48 years old and cannot explain what else it could be.I have even been tested for Parvo and TB and Shingles.

    I am glad I came upon this site because there are days when I feel so frustrated and cannot do the things I need to do- I just feel like crying.

    Thank you for your blog

  37. tina says:

    Oh and my Throid T3 and T4 normal range, when I was originally DX- my throid was 13.62, retest 5.7 and now tests at 1.2 to 1.4 on synthroid. I have found a primary Dr. who wants to monitor the thyroid every month and take t3 and t4 levels on a regular basis to see it if is spiking.

    • Theresa says:

      I feel for everyone on these blogs, 4 years ago I broke out with shingles I was 43 years old, since then I was never right I went to the rheumatologist and had blood work done I was told I had Sarcoidosis,then after my next blood test I was told I had SLE Lupus, unfortunately I am allergic to prednisone and benedryl so they tried to put me on plaquenil well you have to see an Eye Dr. to get cleared for plaquenil, well I went to the Eye Dr. and was told that my perepheral vision was going and that I had proptosis of my right eye and was sent to Philadelphia for eye tests I was then told I had Graves disease and that all of these autoimmunes can just keep on chain reacting. of course I am depressed with anxiety, I was told I also have Fibromyalgia which everyone seems to have, and CFS. I have now had shingles 9 times which causes nerve damage called phn. They made me have MRI’s so of course I have heriated discs, bulging discs and 100 other things along with Arthitis throughout my body. I sometimes wonder if they really know what you do have my blood tests are never the same they teter back and forth. All I ever want to do is sleep, I hate going out the sun hurts my eyes so bad,I always have fevers and i am now Diabetic? I never have energy and when I flare, OH BOY! Blisters in my mouth, my joints feel as if someone is cracking them with a nut cracker, my eyes swell and water so bad, fevers and chills. I guess some days I do feel sorry for myself although I should not, I read all of these blogs and realize it is not just me! but why us? I can’t seem to function anymore it seems that everyday gets worse and worse does anyone have any advice on how to stay awake without feeling so sick everyday? I guess I really don’t have a great support team behind me, they want there mother and wife back to clean and cook and be there for everything as much as I want to I can’t always be who they want me to be, I love them so much and I really feel bad that they got stuck with me, i will be 48 next month and this is my life, Thank you for starting this blog if nothing else it is a great way to release and realize that you are not alone. My heart still works and it feels for all of you! I hope everyone here has a great support team, because that is what it is all about to get through! Good Luck!

      • Tracy says:

        Hang in there theresa, and you’re not alone I feel bad for my kids and husband too. I feel like im half of a mom most days, but my son who is ten said “that’s better than not having you at all”. I’m sure your family feels the same. Don’t be hard on yourself these deseases picked us we didn’t pick them. So hang in there and don’t let this thing get the best of you.

  38. Frieda says:

    Hi. I don’t have lupus at all but the first half was just about me! I have a benign tumour in my pituitry gland which was mostly removed and then nuked by radiation. i have been put on meds for the tyroid and hormones. I lost then 20kg in about one and a half years. I have now started feeling so cold. My blood pressure has always been low. It’s so strange hearing how others are experiencing the same as me. No one believes me that the radiation has left me with a terribly sensitive head to UV rays and that I’m freezing in summer! Thank you for the help and insight.

  39. Emma says:

    Hello,

    I know this is an old post but I see that you have recent replies. I just wanted to say thank you for sharing and giving some insight into your condition.

    I came across you whilst googling about an underactive thyroid and lupus. I have not been diagnosed but intend to make an appointment with my doctor, as I saw my cousin a few days ago and after telling her how my husband and I had been trying to conceive for about a year with no joy, she told me that she had been diagnosed with an underactive thyroid which was directly linked to her fertility. Also, apparently it is hereditary. She told me that they only tested on the off chance as she is not the typical build for an underactive thyroid (is tall and quite slim, which almost all of the women in my family are), but with the fertility issue, and her fatigue and mild depression they thought it was worth checking…

    I also have raynauds (have done for years), which both my mum and my aunt also do, and this has got a lot worse in the past couple of years (I am 33). My aunt also has lupus – so it seems that this is all in my family, and perhaps I ought to just be tested…

    Again, thank you for your straight talking and openness, it is much appreciated.

    xx

  40. rachelle says:

    I guess these conditions are more common than I thought. I have hypothyroid, hashimotos and SLE. My symptoms started for SLE when I was 13 years old with migraines and joint pain , but I was called a hypochondriac for years. My thyroid problem showed up first also. I wasnt diagnosed with Lupus until age 31, and that was after I became proactive and started doing my own research and made a doctor test me for it. I have so many of the same symptoms as you plus many others. People no longer call me hypochondriac, but they still dont really get what I’m going through. I believe it is important to stay positive , though sometimes I do admit it’s hard especially when I dont feel well enough to do the things I want. But I also try to remember there are people worse off than me. Oh, I forgot to mention I too am having trouble with my synthroid meds. I am on 400mg and my last blood test was so high levels that they couldnt even give it a number. I’m waiting to see what this means , if any one else is having this problem, I will post the answer when I find out. To all of you, I wish you good health and thank you for sharing your stories so others know they are not alone. God bless!

  41. Elayna says:

    I was diagnosed with mild Lupus in November of 2012…so I’m pretty new to the game. The doctors didn’t catch it because of symptoms, they caught it because I had low platelet counts without any obvious reason (no vitamin deficiencies, blood disorders, viruses, or bone marrow problems – thank goodness) So they ran my antibodies and all the Lupus ones came back positive. Which then, looking back, explained the occasional muscle soreness I would experience and figure I had just slept wrong or lifted something heavy or whatever; and explained the tiredness I was feeling which I simply thought was a result of the anxiety (which can also be a Lupus symptom) I had been diagnosed with in March of 2012.

    Since the Lupus diagnosis, I’ve been trying to figure out what my symptoms are. For some odd reason, the last joint in my right middle finger is often sore, platelets are still low (around 90, instead of 150-450 like they should be), varying degrees of fatigue, muscle aches, headaches. I’m on plaquenil, and it’s interesting to see what symptoms have faded away that I wasn’t even aware of. The muscle and joint soreness is definitely less unless in a flare, the headaches are less frequent as are migraines, the fatigue still varies…but it does seem to be less most days.

    It’s been interesting to say the least. I wish you good days and I completely understand your view on not mentioning it much. I hate ‘blaming’ Lupus for feeling tired or sore (even though I know it’s the reason). I’d rather push through, which I have to teach myself isn’t always the best way to approach this.

    The best thing the hematologist told me (while still in the “do all the blood tests for everything” phase before the diagnosis) was that for the most part I feel fine, so I should focus on that. Yes, some people are very sick with lupus, but I am not, so there is no reason I should be worried. Working with my rheumatologist and routine check ups will keep an eye on things and if I feel bad, rest; and when I feel good do whatever I want. It’s one of those everything changes, but nothing really does sort of moments.

  42. allie says:

    You should try kumbucha and earthing (google them). I also have lupus and hypothyroid and these 2 things have helped enormously – reducd my symptoms by about 80%

  43. ROBERTA says:

    HI MY NAME IS ROBERTA I HAVE HAD A DOUBLE TRANSPLANTS TWO AND A HALF YRS. AGO THANKS TO GOD AND THE DONOR WHICH IM FOREVER GREATFUL! BUT MY PROBLEMS WERE STARTING ALL OVER I HAD LOST ALL MY HAIR AND I HAD A PROBLEM WITH ITCHING JUST ON MY BACK THOUGH WELL SINCE THEN AND THROUGH THE LAST2 I/2 YRS . I HAVE BEEN ITCHING MORE SO AND AT LIKE 8 TO 10 HRS AT A TIME I TRIED TO TELL THEM IT WAS MY THYROID BUT THEY SAID NO IT WASNT WELL AFTER GOING BACK AND FORTH WITH MY INSULINS AND FINDING OUT IT WASNT THEM AFTER 2 1/2 YRS I WENT TO A THYROID SPECAILIST AND HESAID I HASHIMOTTOS THYROIDISUM BUT THEN THEY RAISED MY LEVOTHYROXON MEDS ANYWAY I CANT SPELL MUCH LOL,BUT NOW I TAKE 112 MG BUT IM STILL ITCHING LIKE CRZY AS SOON AS I WAKE UP AND START MOVING AROUND IT STARTZ AND IM SO MISERABLE ALL I DO IS ITCH AND TEAR UP MY SKIN MY SKIN IS SO HORRIBLE DRY AND WATER MAKES MY SKIN ITCH MORE AND MORE DRY ALL THE LOTIONS AND CREAMS THEY MAKE IT WORSE I VE USED OILS AND STUFF FROM THE SKIN DERMO,AND I STILL HAVE SEVERE DRY SKIN AND ITCH UNCONTROLABLY I HATE IT I CRY AND CRY AND PRAY AND CRY I HATE IT SO MUCH I VE THOUGHT AT TIMES I D RATHER BE DEAD BUT I DIDNT FIGHT THIS HARD TO GET TRANSPLANTS TO TURN OVER AND DIE !I HAVE MANY DOCTORS BUT NONE THAT HAVE BEEN ABLE TOHELP ME WITH THIS SOP FAR , IM GOING TO SEE ANOTHER DERM,DR AND SEE IF THIS ONE MIGHT BE ABLE TO HELP ME I ALSO TAKE EXIETY MEDS AND I HAVE PAIN MED FOR MY BACK IVE HAD A MESSED UP BACK FOE YRS I WAS HIT IN THE REART END BY A TRUCK AND HE RAN ME INTO A SEMI TRAILER AND IT RAN ME INTO A DITCH IT MESSED ME ALL UP AND IT WAS ALLL THR PILLS THAT SCRRWED UP MY LIVER AND KIDNEY WHICH IS WHY I HAD TO HAVE THE DOUBLE TRANSPLANTS IVE COME ALONG WAYS THANKS TO GOD AND THE DONOR AND MANY PRAYERS AND DRS AND NURSES I HAD TO LEARN HOW TO WALK ALLL OVER AGAIN THE ONLY THING THAT HEPS ME WHEN I ITCH IS WHEN I TAKE THE EXITEY MEDS AND I FALL ASLEEP AFTER HRS OF TEARS AND CRYING AND ITCHING MY SKIN IS TERRIBLE I HAVE BUMPS UNDER MY SKIN ITS TERRIBLE SOMETIMES I FEEL LIKE JOB IN THE BIBLE BUT I KNOW ITS NOT GOD MAKING THIS HAPPEN HE JUST ALLOWS IT I WILL NOT CURSE THE LORD GOD EITHER I LOVE THE LORD AND I KNOW ITS NOT HIS FAULT BUT I SURE WISH HE D STOP LETTING IT HAPPEN I HAVE CLAIMED HEALING BY THE STIPES OF JESUS CHRIST BECAUSE IT SAYS IN THE BIBLE BY HIS STRIPES WE ARE HEALED AND I BELIEVE GOD AND IN HIS WORD I WILLL OVER COME THIS THROUGH JESUS CHRIST MY LORD SOME WAY SOMEHOW I KNOW GOD WILL FREE BE FROM THIS AND I WILL NOT TAKE MY LIFE TO BE FREE FROM THIS WRECH ED CRAP I KEEP GOING THROUGH I PRAY GOD WILL HEAL ALL OF YOU AND MYSELF AND ll those who are ill in this world GOD BLESS YOU ALL AND YOUR FAMILYS IPRAY GODS PEACE BE WITH YOU ALL IN JESUS NAME AMEN!BOBBIE LEE!IF YOU KNOW OF ANY SPECAILIST HOSPITAL OR DR IN THIS AREA THAT COULD HELP ME PLEASE LET ME KNOW OR LOTION OR CREAM OR ?????? I WOULD DEEPLY APPRECAITE IT THANKLS AND AGAIN GOD BLESS YOU ALL !

  44. ROBERTA says:

    HI THERESA , HON I KNOW WHAT YOU MEAN I FEEL SORRY FOR MYSELF TO ALOT OF TIMES BUT DONT WE ALL AND I KNOW I USED TO WHEN I DIDNT HAVE ANYTHING WRONG WITH ME BEFORE I GOT SICK I MEAN NOW I KNOW HOW IT IS TO BE OVER WEIGHT IT WAS NEVER A PROBLEM FOR ME BEFORE IM DIABETIC NOW USE TO NEVER HAVE TO WORRY ABOUT WHAT I ATE I DIDNT OVER EAT BACK THEM BUT I DIDNT HAVE ANY OF THESES ISSUES BEFORE , AND THE SORE S IN YOUR MOUTH AND THE EYES BEING SO DRY AND SWOLLEN AND FELT LIKE THE SAND MAN HAD CAME AND DROPPED THE WHOLE LOAD ON MY EYES AND FACE AND MY MOUTH AND MY SKIN AND EVEN MY VAGINA TOO I D GET SOO DRY I COULDNT USE BUT ULTRA SOFT CHARMIN AND STILL HAVE TO USE IT ALL THE OTHERS CUT ME DOWN THERE SO IHA DTO SEE A DR TO GET PRIMERIN IM ONLY 57 ME AND MY HUBBY THOUGHT LIFE WOULD BEGIN AFTER WE TURNED 50 BUT ITS SEEMS TO BE A STEADY DOWN HILL RIDE I SURE HOPE A QUICK TURN AND A GREAT JUMP COMES AND TAKES US ON A STEADY CURVE UP AND ACROSS WOULD BE NICE AND AROUND THE BEND AND JUST A SLOW EASY RIDE FROM THERE ON ! WOULD BE NICE NOTHING WRONG WITH HAVING HOPE AND FAITH THAT WILL ALL GET THROUGH THESES TERRIBLE ORDEALS , I LOST MY MOTHER TO CANCER THE SAME YR I WAS TOLD I WAS GOING TO DIE IF I DIDNT RECIEVE A LIVER AND THEN I ENDED UP HAVING TO HAVE A KIDNEY TOO ! BUT THE GOOD LORD KNEW EXACTLY WHAT I NEEDED AND HE MADE SURE I GOT THEM JUST IN THE NICK OF TIME BECAUSE I WAS STEADY ON THE DOWNHILL UNTIL THAT MORNING AND BY THAT EVENING I HAD THEM BOTH AND ON THE WY HOME MY HUBBY GOT A PH CALL AND SAID I HAD TO GO BACK INTO SURGERY I WAS HAVING SOME INTERNAL BLEEDING AND SO HE WAS GOING TO TURN AROUND A ND COME BACK AND THEY SAID NO NEED WILL CALL YOU IF ANYTHING GOES WRONG SHE SHOULD BE FINE I WAS TILL THE NEXT DAY AND THEN I HAD TO GO IN AGAIN AND THEY HAD TO MAKE SOME ADJUSTMENTS I GUESS BECAUSE I WAS STILL BLEEDING BUT GOD TOOK CARE OF IT ALL JUST LIKE HE IS RIGHT NOW I PRAY FOR US ALL HES WITH US AND HE WILL GET US THROUGH THIS TO GODBLESS YOU AND ALL OF US OUT THERE IN THE WORLD !

  45. Penny, Awesome site and I bet it was a lot of work! I always have so much to say but get so sick of typing!! I was diagnosed in 2002 hypo and upped on levothyroxin till I leveled out @ 100 mg. In 2010 I was diagnosed with tonsil cancer that had spread to my lymph nodes. I had chemo and radiation and have had clear PET scans since. Yeah!! Two weeks ago I started feeling whack. I felt like my engine blew, my thermostat broke and I was on the side of the road with my hood open and hazard lights on!! Went to my PCP and saw his practitioner. She ran thyroid tests and said I went from 3 to 9 and raised me to 112mg. Meantime I had some strange pain downstairs and went to my GYN. Seems my inards were dropping. Never knew that could happen. She said “its not bad, Ive seen ladies with their uterus on the outside!!!!??? I was thinking…I got a cavity..lets fix it befor the tooth rots out!! I started feeling very tired after I started my higher dose of levothyroxin and called the practioner telling her again my broke down car feelings and that an upped dose had never made me tired. Usually I felt a little energy for the first two days and then leveled off. She told me it takes 6 wks to feel the full effects, asked if I was on antidepressants and thought maybe I needed to talk to “someone” since Ild been through so much. Ironically I had my routine pap smear one week after I found out my bladder was slightly prolapsed. She was so awesome, listened like my mother would have and decided to run every blood test know to man. She said she would have to send the results to my PCP as she was just a GYN and couldnt read them to me. But did tell me my vitamin D was 22..supposed to be 2000 and that I had a positive ANA test. Didnt know what that was and ended back at the PCP. Meanwhile I have all along had chest pains and shortness of breath. First his question to me was why my GYN ran these tests (I saw my actual doctor kind of pfttt at the practitioner) It was like he was mad. Hello!! I went to his office with the same complaints…the course of action they took was their mistake, not mine!! Anyway, tells me I have lupus. He wanted to admit me for the chest pains but Ive had them before and just was stuck in the hospital, a million test, and dollars and nothing come of it! Looking back I think they were probably lupus flares and nobody ever checked for that! I also didnt want to be admitted because my hubby and I have custody of my asbergers, severe ADHD, OCD, anxiety and sensory disorder 5 yr old grandson. My hubby runs a restaurant 80 hrs a wk and my baby goes to school and therapies of different sorts 6X weekly. I told him I would do out patient tests and if he found something that required hospitalization…then Ild go, of course! But hes still just checking my heart and no lupus tests. He got mad I didnt want to be admitted but he doesnt follow my path and I have nobody to watch the lil guy!! Meanwhile hes done a blood draw, checked for clots in my lungs with a scan…took less than an hour and I have a stress test tomorrow. And he’ll see me back June 25th. I think the pain is pleurisy from the lupus. He wanted to hospitalize me yet has done 2 tests and a blood draw. Meanwhile …thyroid still whack. Foggy brain, adrenals shot,throat so sore can barely swallow ( and Im used to throat pain due to cancer treatment. I have no saliva glands) and my temputure is way off. My hands actually go numb and feel like I shoved them in dry ice!! Im freezing and have rigors all the time. Im just at a loss right now. I cant take care of my lil man feeling this way. Hell, its hard to keep up with house work!!! Any suggestions??? I cant even think straight anymore!! Thanks for your time and for reading my novel!! Peggy Wonorski :D

  46. Tracy says:

    I just wanted to thank everyone for sharing this information. I’m a 30 year old mother of 3. I was diagnosed 10 years ago with hyperthyroidism and 4 years ago had radiation to shrink the gland. So now I have hypothyrodism and I take leevothyroxin 75mcg daily. But three weeks ago my legs and feet started to swell and I’ve been getting light headaches that seem to put pressure on my eyes, Im sleeping my life away and I’m so cold even when my body is sweating. So now I’m worried and have made an appointment with my primary but she can’t see me until the end of June. If anyone here has any info on what may be happening i would love to here from you.So I won’t worry for the next two weeks waiting for this doctors appointment.

    Thanks

  47. Matt says:

    Hi there, are you aware of the connection between fluoridated water and hypothyroidism? Hypothyroidism is directly connected to fluoride consumption, as the fluoride is ingested or inhaled even, it gets into your bloodstream and one of the things it does is it displaces Iodine. Now Iodine is required by the thyroid gland to produce T3 and T4 hormones. No Iodine means no T3 or T4. Fluoride equals under active thyroid. I have been studying this for the past week and just happened to come across this page while looking for a link between lack of appetite and hypothyroidism. I am certain that fluoride is the lead cause of every major disease of the modern age. As every condition is different, although all seem to attack healthy tissue. Please let me know if you have any other information.

  48. Aba says:

    Hi,your post has been very helpful to me.as I write now I dont really no if I have any of de disease u’re talking about but I have some of the symptoms you mentioned.The most painful one is the muscle pain and the headache.at times too it feels like I have dizziness or scizzures.the sad aspect ot if is that i’ve been to many different doctors and none of them has ever mention any of these diseases to me.sometimes I feel like am even going to die.now I look up to God to heal me and I know and trust that I will be healed in Jesus name,Amen.

  49. kayla says:

    I’m a 21 year old female I have two kids,would have more if I stopped miscarrying..I’ve taken 112 mg of levothyroxine for over a year ago since I was diagnosed with hypothyroidism…my doctor promised I’d feel so much better when my levels become normal again..I however do not feel better my tsh is the only teat she does on me and IV asked for a different thyroid hormone because of this I am still gaining weight am always so tired can’t remember anything can’t even talk to people or hold a conversation I swell up even tho I don’t have a salty diet and I drink plenty of water,I’m always in pain sometimes it’s a numb pain like that section that is hurting feels like it doesn’t exist at all…this is all frustrating and I try and trust the doc but what is happening to me I’ve miscarried 3 times in a row now CT scan with did of my abdominal and just found cysts but why is this happening to me?

  50. Jeanie says:

    I’ve been reading about this drug LDN and it sounds like it could really made a difference in our lives. Has anyone tried it? Here is some info on what it is and what it does. I wish I had a doctor open to helping instead of ignoring or trying to treat my symptoms instead of getting to the root of the cause ie LUPUS. She is resistant to run the blood work when I’ve told her I’ve had it all my life. BAD Doctor. Alas I’ve got Medi-cal and most specialists do not accept it. BOOOO. Okay here is the info on LDN.

    In the developing world, LDN could provide the first low-cost, easy to administer, and side-effect-free therapy for HIV/AIDS.Naltrexone itself was approved by the FDA in 1984 in a 50mg dose for the purpose of helping heroin or opium addicts, by blocking the effect of such drugs. By blocking opioid receptors, naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: beta-endorphin and metenkephalin. Many body tissues have receptors for these endorphins and enkephalins, including virtually every cell of the body’s immune system.

    In 1985, Bernard Bihari, MD, a physician with a clinical practice in New York City, discovered the effects of a much smaller dose of naltrexone (approximately 3mg once a day) on the body’s immune system. He found that this low dose, taken at bedtime, was able to enhance a patient’s response to infection by HIV, the virus that causes AIDS. [Note: Subsequently, the optimal adult dosage of LDN has been found to be 4.5mg.]

    In the mid-1990′s, Dr. Bihari found that patients in his practice with cancer (such as lymphoma or pancreatic cancer) could benefit, in some cases dramatically, from LDN. In addition, people who had an autoimmune disease (such as lupus) often showed prompt control of disease activity while taking LDN.

    How does LDN work?

    LDN boosts the immune system, activating the body’s own natural defenses. Up to the present time, the question of “What controls the immune system?” has not been present in the curricula of medical colleges and the issue has not formed a part of the received wisdom of practicing physicians. Nonetheless, a body of research over the past two decades has pointed repeatedly to one’s own endorphin secretions (our internal opioids) as playing the central role in the beneficial orchestration of the immune system, and recognition of the facts is growing.

  51. paula says:

    hi there, I am so glad I came across your blog page, I would really be pleased if you could help me, I to have thyroid disease and am on meds , I have pernicious anaemia and have B12 shots every 3 months, of witch both took 10 years to diagnose as no one believed me, my doctor just kept on saying I was depressed , all the females in my family ( 4 sisters, 9 nieces, and my own daughter) all have both conditions, but the last 4 months I have had very sore finger, wrist and ankle joints , and it is just starting to go to my neck, my mum has rheumatoid arthritis, could I be developing lupus, I know this sounds funny but I have to laugh, as I feel I always have some thing wrong with me, and my hubby and kids always joke , I know they are only doing it to make me feel better bless them, but I sometimes feel like im a useless mum and wife as I am always very tied…… oh ark at me I sound like such a moaner , I would be so so pleased if you could get back to me, thanks once again for your brilliant information xxx

  52. Diane says:

    Just back from my first visit to a new doctor for my hypothyroidism which I’ve had for 35 years. This doctor’s English was not the best so when I mentioned a couple of new issues I am having . He starts talking about the fact that I’ve been on Synthroid for so long and blah blah blah …. causes LUPUS . I was so shocked I couldn’t even ask questions … I wasn’t sure I’d heard him correctly … he ordered blood tests and a sonogram and I go back in 2 weeks . So here I am trying to find a connection between thyroid drugs and LUPUS … and found your blog . Thanks for writing it … at least now know I heard him correctly and I have a place to go to if they decide I do have LUPUS.

  53. michelle says:

    Hi Penney and everyone else,
    Just found your Blog,Its very informative and Interesting so Thank You.:) I had a Thyroid problem in my 20′s,Had a Goitre and part of my Thyroid removed.Then some years later it acted up again and I have been on meds ever since.I was diagnosed with Lupus 3 wks ago,am waiting to see a Rheumatologist in oct.I have had painful swollen joints for the last for the last two mths or so.some days I’m struggling to get out of bed as its in my feet,my knees my wrists,fingers and elbows.So picture me trying to get up from a sitting position or if I kneel downn.I m like a demented see saw trying to get up from the sofa or a chair,as my knees hurt if I want them to take the weight and my wrists and fingers hurt if i put the weight on them its painful but also frustrating and Hilarious at times.Trying to open bottles,buttons etc is a nightmare,but You find ways of coping,other than flinging things and screaming your Lungs out.Oh wait just realised you said it can effect your Lungs also,so maybe I should scream while I can lol Im just wondering if it effects work,some days Im very tired but its happened twice that i have had this dreadfull tiredness come over me,like I have been switched off and just had to sit downn for while in order to cope.Im waiting for it to go away for a while but that doesnt seem to be happening,I have also noticed i am putting on weight rapidly,put on about 8 lbs this last two weeks and im eating sensibly,but im bloated and feel like certain foods are not agreeing with me.Its all new to me so I guess its a learning process and would appreciate any help I can get.
    Thanks Michelle

  54. Alyssa M. says:

    Hi! Your blog is really inspirational! Your right, there are far worst diseases than lupus I guess. When I was 20 I went to the doctor for bad stomach pains, they insisted in a CAT scan to rule out appendicitis and in that process they found I was actually only born with one kidney! Crazy right? Little after that I noticed a lot of changes in my body. Lots of light headedness, weird rashes on my legs along with crazy swelling and PAIN, being fatigue, etc etc.. I soon found out right after I turned 21 I had lupus! Lupus can be scarey enough but it is an autoimmune disease and my poor one kidney was my first thought. Lupus is known for attacking your kidney more in alot of people versus other organs which freaks me out unbelievably! Some days I break down and don’t know how to deal. Serving and bartending is not an ideal job! But it’s the only way to pay my bills! Going to school full time along with working full time is super stressful and causes a lot of flares as well! I hate complaining and talking about it but its hard not having anyone who understands your pain to talk to. Some days I have the mentality “Ill be fine, we live to die anyways right?!” Other days I find myself crying because the pain is so bad and its not fair it holds me back from making money at work (bc I do have to call out from time to time). I love to work! I love making money! Who doesn’t love that part right? But very self only do I leave work and I’m not in pain or see the rashes slowly but surely surfacing! It’s hard. I try and stay positive and not let it hold me down. But it’s a challenge I never expected to face every day!

  55. Sasha says:

    I am SOOOO happy I stumbled along your blog! This has been helpful in so many ways! I have been wondering what is wrong with me for the last 2 years plus. The doctor diagnosed me with both Hypo and Hyperthyroidism. Strange, I know, but I suffer from a mixture of symptoms coming from both. However, I have everything related to Lupus as well. I have a family history of Lupus, but nothing to do with the Thyroid. I feel my doctor is just brushing this off. It makes sense to say that Lupus could cause the Hypo and Hyperthyroidism.

    THANK YOU SO MUCH FOR PUTTING THIS INFORMATION OUT!!! You have worded it and laid it out so that people with no medical background or knowledge whatsoever can understand clear as day! Thank you and hang in there, you seem like you have it handled as well as you can! I am off to see a NEW doctor soon… :)

  56. Destiny says:

    hi i was diagnosed with sle back in 2010 and let me tell you mine gets really severe….i was just told by my dr that im cleared of my pancreatic cancer that i had gotten in 2006 at the age of 14 they had to remove my spleen with part of my pancreas and then of course i develop lupus and sometimes i cant even stand it well in my family there are alot of thyroid problems my grandma had hashimoto or however you spell it and i get swollen glands from time to time and i have almost all of the symptoms of hypothyroidism and i was wondering could there be a chance i have both of them

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