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.
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.
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I’m glad you wrote this.
Thanks. It was a lot of work. And I was a little self-conscience about posting it.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!!!
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
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
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
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!
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!
Sara,
I hope you stick around on my blog. 
Thanks for all your great comments. You seem like a sweetheart.
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
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!
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.
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!
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.
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.
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.