Everything You Wanted to Know About Autoimmune Diseases But Were Afraid to Ask

As I was browsing through my list of saved links on my Favorites list earlier today I came across this very comprehensive and interesting site:Understanding Autoimmune Diseases

Symptoms, possible causes and other startling information are discussed.

It's a very interesting and eye-opening read both for those suffering from an autoimmune condition as well as for those that simply want to learn about it.

Spotlight on Sarcoidosis

I was just watching a special on A&E about the darker side of comedy and the tragedies that famous comedians have gone through. I learned something new and didn't know that Bernie Mac had Sarcoidosis, an autoimmune disesase.

This excerpt was taken from Medline Plus Medical Encyclopedia online to explain what it is: "Sarcoidosis is a disease in which swelling (inflammation) occurs in the lymph nodes, lungs, liver, eyes, skin, or other tissues. The cause of the disease is unknown. In sarcoidosis, clumps of abnnormal tissue (granulomas) form in certain organs of the body. Granulomas are clusters of immune cells.

The disease can affect almost any organ of the body, but it most commonly affects the lungs.

Possible causes of sarcoidosis include:
*Excess sensitivity to environmental factors,
*Genetics,
*Extreme immune response to infection

The condition is more common in African Americans than Caucasians. Females are usually affected more often than males. The disease typically begins between the ages of 20 and 40."

I remember hearing on the news that his death was attributed to a heart attack with no mention of Sarcoidosis. Maybe my memory fails me. At any rate it would have been nice for an autoimmune disease to gain some media attention to educate the masses.

A Small Step

I finally posted a question on Dr. Oz's website. The space only let me type a few words but I got to ask "Why aren't there any doctors specializing in autoimmune diseases?"

I'll keep checking to see if there's a response and will post it in a future entry. I took a very small step today just by asking a question but who knows, this could be the beginning of autoimmune diseases actually being discussed in the media and thus educating the masses.

Ask Dr. Oz?

Well, my growing frustration with the ignorance at large concerning autoimmune diseases and their symptoms has prompted me to ponder sending America's Doctor, Dr. Oz, an e-mail. I love his show and it's so informative and entertaining!

Perhaps someone with his clout is just what is needed to get people talking, thinking and learning about all things autoimmune. Now I'm generally a reserved person who wouldn't want to be on tv or in the spotlight of any kind, but for this cause I certainly would. It wouldn't hurt to write to him at any rate. Maybe he'll respond, maybe he'll do a segment on a show someday, maybe I'll get to ask my question live on tv. Ha! Well, I'll give it a try.

If enough of us do something to bring this cause to the public's eye in whatever medium we choose we'll be making strides in no time.

Disability: Yay or Nay?

Speaking of stigmas! Again I have been raised to not even see a doctor unless you're practically on your death bed. Feeling a little nauseous? Go to school! A headache? Go to work! Yes, disability in my mind meant someone completely incapacitated and not being able to do anything. Perhaps I was also led to believe that it was a handout and that many who didn't truly need it or were deserving of it got it anyway. A certain neighbor who received it simply due to the fact that she was obese came to mind. I'm no waif by any means but I certainly wasn't one of those people who was about to take advantage of the system.

Constantly bombarded with Binder & Binder commercials flashing every 5 minutes or so on the tv, I began to wonder if my illness qualified as a disabling condition. When I was working prior to being laid off in September I remember feeling ill most days. I am still horrified by how many sick days I took and even moreso by the fact I wasn't fired by my employer for taking so many. I have good days and bad days but if my bad ones extend to more than a few at a time like they did I wonder if any new prospective employer would ever put up with me. That's a sobering thought which started to crack the shield of denial I have worn so long regarding my own disability.

I decided to do some research about what disability truly was and if I qualified for it. SSI is strictly needs based and I don't even qualify for Food Stamps so that one is definitely not for me. SSDI on the other hand is a program that you pay into while working sort of like an insurance if you do ever become disabled. There's no shame in that at all and I certainly paid into it throughout my career. I am indeed entitled to every penny and it's not a handout at all.

I then browsed through the various ailments that automatically qualify you and shockingly, but perhaps not so, I qualified for several. I have an Endocrine disease, Immune ailment and Depression. I have since brought up possibly signing up for disability with both my General Practioner and Endocrinologist. They both agreed that they would gladly help me and also suggested seeing a Psychologist. The main reason for this was not only for my ultimate happiness and to help me deal with my illness but also because I am so young and educated that it may be a bit more difficult to receive disability. Ha! I have since been seeing a therapist and also mentioned possibly going on disability to her. She completely agreed and is helping me to work through my feelings regarding it and weighing the pros and cons.

Currently I'm still on the fence about it because a part of me feels like I'm almost quitting and giving up the fight. I am a very ambitious person and this doesn't sit well with me. She insisted that there are a great many high-functioning people who receive disability and go on to lead happy and productive lives. Also, you don't have to "look sick" in order to be sick and disabled. I have to keep telling myself that. Another thing she brought up is that stress levels can exacerbate my condition (I know this all too well) and so looking into disability is a very wise decision and one that will help me in the long run.

I will also still be able to bring in some sort of income by doing part-time work. A certain amount per month is allowed. I believe that one is allowed to own a business but not work at it as well. There are a lot of other things I need to look into but I am looking at filing for disability in a whole new light and will probably start actively doing so within the month. I understand that it is a long and drawn out process and the sooner you get the ball rolling the better. I will continue to post any new information regarding my filing for disability. Remember it's not the end but a new beginning.

Treatments for Autoimmune Disease?

I watch a lot of Discovery Health Channel and love medical shows in general. It's one of my favorite pasttimes. In one episode of "Mystery Diagnosis" a little boy had an autoimmune condition that severely impaired his motor skills. A treatment known as plasmapheresis was performed on him and he consequently improved each time he did it. Plasmapheresis is a procedure similar to dialysis which filters the blood to eliminate the antibodies which wreak havoc on the body and destroy the various tissues and organs depending on which autoimmune condition you happen to have. How interesting! And why wasn't this treatment ever mentioned by any of my doctors? I did some more research on the internet and apparently so far it's only used on the more serious life threatening ones like Guillain-Barre syndrome and Lupus. I didn't find any information on this as being a possible treatment for Hashimoto's. The standard treatment for Hashimoto's seems to be to just let the thyroid die and to have the antibodies keep on doing their nasty work while then having to take replacement hormones for the ones lost due to the gland being eaten alive. Lovely. Why not just nip the real problem in the bud and get rid of the antibodies which destroy the gland?! Nah too easy I guess. Ha! Gotta love beaurocracy.

In my searches I have also come across medicines which supress the immune system and even read something about low level chemo which does so. Wow. Can these be applied to Hashimoto's? Is there any more research being done to combat autoimmune diseases? Why aren't there any autoimmune doctors or specialists?

The other day I saw my Endocrinologist for blood test results. Another doctor sat down with me prior to meeting with her to document my progress and medical history. My Endocrinologist is quite busy these days. I asked the doctor about my antibody levels and if they were shown to have increased on the blood test's results. He looked dumbfounded as he was looking through my medical file and then excused himself and said he had to ask someone. It was about a good 10 minutes later when he returned and stated that this blood test didn't check for them. Way to dodge the question. Anyway, I can see that the medical community has much work to do regarding anything autoimmune related.

Battling a Social Stigma

For several months now my Endocrinologist has persuaded me to see a Psychologist. She once asked me about my line of work and I believe my response was that I was stressed out and didn't like my job. Ever since then she has asked if I wanted her to prescribe me a "happy pill." I have since been laid off along with 600 other fellow workers so clearly my unhappiness at work is no longer an issue. It was indeed a blessing in disguise come to think of it. I was seriously hanging on by a thread both physically and mentally as a result of my illness and also because I was no longer satisfied with the job. My side business which is my true passion was beginning to overshadow my full-time job anyway and it sounds horrible to say but my 9 to 5 job was becoming a hindrance blocking my ability to expand the business further.

As every visit came and went my Endocrinologist kept asking me if I saw anyone yet. I began to wonder: Do I look unhappy? Am I really unhappy and just in denial about it? Was I depressed and didn't even know it? I decided to give talking to someone a try.

Seeing someone and speaking about your feelings and problems is virtually unheard of in my mind and not how I was raised at all. Taking a "happy pill" is even more of a taboo. While I am happy to say that I overcame my pride about seeing a therapist (I will be seeing her for the third time coming up next week), I still feel very strongly about not taking any medication unless I truly need it. I maintain that I don't have to since thankfully I don't have extreme Depression or Anxiety. I have discovered that I do suffer from these afflictions from talking to the therapist but all in all I manage it well.

Thyroid disease can cause symptoms of mental illness unfortunately. I must admit that before I was diagnosed with Hashimoto's I had some pretty scary bouts of depression but always managed to rationalize it and function well in the world. I guess a part of me thought it was normal to feel this way and I haven't felt otherwise so this must be my normal. I have never felt the need to see anyone as a result and also didn't want any of the stigma attached. A part of me still feels a little funny about walking to the therapist's office or sitting in the waiting room. I wonder what the others think I'm there for? I hope no one recognizes me. It's all so silly but there still is that real fear of being stigmatized. I'm by no means crazy but I'd be a fool if I said I didn't have any thing to work out or toward. We all have something or other.

I am happy with myself for taking that first step. It really is the only time during the week that's truly just for me and about me. It's a time to help me sort out my feelings in dealing with this illness. I often have a "it's no big deal" attitude even when with things that are a huge deal. It is a big deal that I can't let myself just relax when my body and mind are telling me that I need to. It is a big deal when I berate myself for not finishing every little thing on my to-do list. It is a big deal when I feel like a failure because I didn't do something substantial to expand my business on any given day because I feel too sick and out of it to even think about doing anything. These are just a few of the things I hope to work through. I just want to be able to enjoy my life more and reach the goals I set in place for myself while respecting the fact that I may not have the energy I once used to.

I'm a work in progress but the stage has been set. For anyone thinking about seeing a Psychologist but wary of doing so I highly recommend it. If I did it you can too. It's time for this stigma to go away.

A Clean Bill of Health... For Now

I just came back from my Endocrinologist's for a review of blood and urine tests that were taken a little over a week ago. She was super happy about it and I must admit that her mood was quite contagious. She was finally satisfied with my hormone levels, liver and kidney function and even vitamin levels. I need to work on increasing my good cholesterol levels but that's it. She said that for now she would not be increasing my dosage of Synthroid but may need to depending on what the next bloodtest, which would be taken at the end of January, reveals. Yay!

I have been feelng a lot better lately. Better than I have for some time. I still feel fatigue, muscle weakness and occasional joint swelling but all in all it's not bad and I'm used to it. By now I'm guessing that these symptoms will probably never really go away completely and so I'm still trying to make my peace with this.

While I'm pleased with this news, and trying to cram as much as I can into these "good days," I'm also a bit sad and scared because I know this will soon end and I'm not looking forward to it. I just hope that I can accomplish as much as I can in between and I'm not too hard on myself when the bad days rear their ugly heads again.

Let's Make a Trade

Recently a friend of mine told me that he was diagnosed with Graves Disease. He had been trying to figure out what was wrong with him for some time. About a month ago he had been told that he had diabetes. Turns out that what he really had were hormone levels that were about 3 times too high which were making him extremely hyper and consequently extremely tired. He reported to me that he felt relief when he could finally put a name to what he had. He was also pretty angry that no one else even thought to check to see that it could be Graves before this.

I totally understood this and remember feeling the same way upon my diagnosis of Hashimoto's. I then told my boyfriend about our mutual friend and he jokingly suggested that he send some extra hormones my way since he has too many and I have too little. Hahaha! Leave it to him to make a joke and lighten the mood. Aww I love him. :)

Yet Another Odd Symptom

A funny thing happened to me in Philly the other day.... That sounds like the beginning of a joke but the truth is it wasn't funny at all and more scary than anything. Once again a new symptom reared its ugly head.

My right knee swelled up and stiffened to the point where it became quite difficult and painful to walk. And of all days I had a long walk ahead of me. I was walking down Broad Street, Philadelphia celebrating the Phillies' National League Division win. Go Phillies! It was an amazing experience except for the minor annoyance that was my knee. Why now? *sigh*.

If I didn't mention it before I'll say it again, I have a very loving and accepting boyfriend. I didn't want to ruin this experience for him and didn't want to complain so kept right on walking. This symptom however was a very visual one and when he felt how swollen it was compared to the other knee we hobbled ourselves right over to IHOP and had some dinner or breakfast depending on how you look at it. The festivites were winding down anyway and the police were out in full force blocking streets anyway.

I have experienced some slight knee swelling in the past but never to the degree that I had that night. Usually it was more of a full feeling above my knees that would go away in a couple of hours without any pain sort of like if your ankles swelled up or something. Well, I went home and spent the next day almost completely off my feet. The swelling went away and my knee popped a few times. I did some online research and discovered that a swelling above the knee might be bursitis. Those succeptible to getting it include those with thyroid disease. I had suspected as such. I kind of in the back of my head thought it was an autoimmune flareup or something of the sort. The question is what exactly does it mean? Does it mean that I need more Synthroid because my hormones are once again out of whack? Does it mean that my antibodies are finding new tissue to destroy migrating from my throat to my knee? Is it the start of a more sinister autoimmune disease like rheumatoid arthritis?

I need to ask my doctor on the next visit. I do see my Endocrinologist for a blood test in a couple of days. I'll mention this to her and see what she has to say.

Those Pesky Vitamin and Mineral Deficiencies

This is a comment that was left for the posting "Lookie What I Found" dated 10/19/09. It contains a lot of great information regarding vitamin and mineral deficiencies and how they contribute to symptoms. It also stresses the importance of advocating for your own treatment. Thanks so much Kit in St. Louis and all the best! :)


"Hi Mel,
I saw your post over at Dear Thryoid and thought I'd drop you a line.
I noticed that you have some of the same problems I had for a really long time. I used to have awful achiness and was in constant fear of migraines and muscle spasms every time I moved or put any challenge on my back muscles or lifted my arms (God forbid lift an iron skillet).

Turned out, yet another lovely autoimmune disease was responsible. I have pernicious anemia which prevents me from properly absorbing B12. B12, you probably know, is in abundance in meat, dairy and eggs, but if your stomach isn't producing "intrisic factor," you won't be able to make it available to your tissues.

Unfortunately, the B12 test isn't very sensitive, it has a 50% rate of false negative. If you ask to be evaluated, insist on getting an MMA test, too, which will be high if you have a B12 deficiency. You want your B12 level to be around 800, which is optimal. Unfortunately, most labs say you're okay if your B12 isn't over 200. Crazy!!

Good luck, hope you aren't feeling too lousy today. Kit in St. Louis"

A Leader in the Fight Against Autoimmune Diseases

Check out Pat's Fund, a very worthy cause:

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Lookie What I Found

Check out this AMAZING blog!

Dear Thyroid

VERY cool! :)

Take Two Pills and Call Me in the Morning...

There are a lot of people (and even some doctors!) who believe that once you take the required meds prescribed for your ailment you should feel absolutely perfect again. You are "cured!" This is sadly not the case for those suffering from an autoimmune disease or any chronic illness. There is often no cure and symptoms are only managed sometimes.

I take a .112 mg Synthroid pill religiously every single morning upon waking. It makes up for the hormones that my dying thyroid no longer makes. My own body is destroying it. I sometimes wonder why my body chose to attack the thyroid gland as opposed to another organ or body part. The hormones help keep everything functioning pretty normally and I definitely see the difference back from when I was first diagnosed. My hair no longer falls out in clumps leaving a bald spot right in front, I don't feel as deathly fatigued as I once did, my skin is no longer extremely dry, my heart, kidneys, liver are functioning normally and I managed to lose a bit of weight which I put on just thinking about food when my thyroid functioning was way down. I also am no longer extremely depressed. I do have my moments though and sometimes still feel like I can't concentrate well. I feel downright stupid sometimes and I'm certainly not. I graduated at the top of my class with honors in College despite everything. I sometimes feel achy. My muscles hurt. I lift my arm to reach something or to wash my hair and ouch. I feel extreme fatigue some days and there's no logical reason for it. I feel dizzy out of nowhere and get migraines for days.

I suspect the days I have these terrible symptoms my immune system is at peak performance wreaking havoc on my body. Sneaky. Very sneaky. I'll have lapses of time, usually a couple of weeks, where I can't believe how good I feel and deny that I'm even sick. And then the good times will be snatched away from me once again. It's not fair and I pine for them to return. Then again I've learned to view it as my downtime where I rest up and ponder all the things that I'll do when I feel up to it again. It's the cycle of life I suppose.

A Little Understanding Goes a Long Way

I spoke to a dear friend today who has both PCOS and diabetes. It's her birthday. While I am extremely lucky to have some really amazing friends and a very loving and accepting boyfriend, she is the only one who I can say truly understands what I go through because sadly she experiences many of the same symptoms I do.

We have good days and bad days. Some days it's hard to move and get even out of bed. Other days we're confident, have quite a bit of energy and are ready to take on the world. Some days all we can do is think about all the things we want to do and have to do and realize that our will is not enough to overcome our physical self. And we get frustrated. And we feel bad about ourselves and blame ourselves for not doing enough. We can't understand why. We hate it. We feel like losers. We also feel bad about telling others how we truly feel and try to sugar coat it by saying "It's not that bad. No big deal. I'll be ok." We feel like we're complaining. We keep a lot inside for fear that we will come off as complainers to others. We shouldn't have to feel ashamed or afraid to open up or be frustrated. It is what it is.

We didn't choose to be ill and feel this way. I'm still trying to accept it. I often still feel in denial of the whole thing and think I'm supposed to be superwoman and do everything I want to do and then some without getting tired. How dare I? What's wrong with me? I am too hard on myself. I see myself in my friend and want what's best for her always. I would never judge her or tell her she's not doing enough. Why am I then so hard on myself?

Sometimes You Need a Kick in the Butt

I watched the documentary "Crazy Sexy Cancer" today. It was sad in some parts, yet uplifting and empowering in others. I thank my lucky stars I don't have cancer and applaud all the brave souls who battle it every day. My mom had thryoid cancer and thankfully she is a survivor. She caught it due to environmental factors. I get a thyroid sonogram every once in a while to make sure everything's ok as well. Prevention is always key.

The movie definitely brought about some very good points that anyone with a chronic illness can apply as well. The main one is being your own advocate. Keep searching for that doctor that truly listens to you and doesn't brush you aside making you feel like you're a hypochondriac. I've sadly had too many instances where this happened both prior to my diagnosis and occasionally still to this day. Make sure you do as much research as you can on your particular disease. No doctor has the time to keep you completely abreast of how you can live your best life nor do they know what's truly best for you. They are swamped with other patients and besides who knows your own body best but you?

I also totally agree with eating as healthfully as you possibly can. The documentary's star, Kris Carr, tackled a macrobiotic diet and it worked beautifully for her even though it was a bit difficult to stick to at times. I'm just trying to make small changes by including more fruits and vegetables in my diet and cutting out the processed sugary foods. I do feel the results so far to some extent. I was able to get rid of a migraine last week by drinking ginger tea with pieces of ginger root in it. Exercise is also helpful but in times of extreme fatique this can be the furthest thing from your mind. I'm still trying to tackle this one.

Most of all don't ever give up on yourself. Sure, we all have moments when we feel sorry for ourselves but we can all take a cue from one woman in the documentary who suffered from breast cancer, Oni. She actually set a timer for 10 minutes a day where she allowed herself to feel sorry for herself, get some tedious chores done etc. and then once the timer rang she got back behind the computer and resumed her life as a writer. The ultimate message of the documentary is to live your life to the fullest and don't take anything for granted. Sometimes you need a kick in the butt like cancer or a chronic illness to show you the way.

Ah The Mystery...

I have been toying with the idea of starting a blog about autoimmune disease for some time now. I love to write and felt I needed to express my thoughts and feelings on this subject hopefully reaching others who have had similar experiences. I have Hashimoto's Thryoiditis and was formally diagnosed in 2006 even though looking back I can see that I have exerienced its symptoms for far longer.

I also got tired and was bewildered at how many people had no idea what the thyroid gland was and what it did. We ALL have one, male and female alike! Indeed, even some doctors I have visited seemed to marvel at the elusive thyroid gland. Did they skip that chapter in medical school? Even in my own schooling other organ systems were extensively covered such as the cardiovascular, skeletal, digestive... yet there was only a mere mention of the endocrine one. How mysterious.... Don't even get me started on autoimmune disease. Auto what?

I find it outrageous that certain other diseases seem to get top billing over the more widespread and deadly ones but that's a whole other blog isn't it? I read somewhere that the reason that other diseases, in particular autoimmune ones, don't get the recognition that they deserve is that they are not sexy. Hmmmm I guess no one wants to hear about fatigue, hair falling out, deathly palor, depression, constipation which are usually experienced on a daily basis, mind you. Yes, I can see why most people would rather not talk about these less than glamorous symptoms.

There have been countless times over the years where I searched the net for people who were going through the same thing mostly to prove to myself that I was not alone. I could relate to some and found lots of helpful advice along the way. I always felt that the search was the most exhausting part of all however. Why are autoimmune diseases so underground? Again, the mystery.... Maybe it's like a secret club. Most of us who have one might not even look sick all the time. Then again, when we do we REALLY do. I can't tell you how many times I suspect someone looking at me for the first time probaly thought I was a drug addict. Uggh. It's a silent, underground, covert operation of a network of diseases... shhhh. Well, I for one think it's time to speak up about it and bring about awareness.