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.
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
- 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.
- 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.
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)
- painful or swollen joints
- 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:
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.
The joints that ache varies.
*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.
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.)
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.
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.
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.Tweet