Thursday, November 12, 2009

Can I Get An Autoimmune Specialist?

Wouldn't it be nice if everyone with an Autoimmune Disorder received their primary care from an Autoimmune Disorder Specialist?

I was listening to a radio show in which there was a doctor who was discussing Lupus. From listener comments and from my prior interactions with others who have an Autoimmune Disease, a common thread seems to be faulty care from doctors who treat these disorders.

Personally, I see an Endocrinologist once a year; he assesses my Thyroid Hormone levels. Even when I feel like crap, these numbers are usually stable. Unfortunately, I am being seen by a specialist whose primary training has more than likely been in the area of diabetes and/or another area that fits under the Endocrinology umbrella.

I have Grave's Disease (an Autoimmune Disease) which has caused my thyroid to dysfunction. The Autoimmune aspect of my illness has never been addressed by any of my 10 Endocrinologists. We patients who have Thyroid issues, which stem from an Autoimmune disorder, have been lumped in with patients who simply have Thyroid disorders. As a result, my "specialists" have had no information for me in terms of the importance of avoiding inflammation and avoiding certain foods, for example. In fact, until I started researching the Autoimmune aspect of my illness a few years ago, I had no idea about the devastating impact that Grave's disease can have on the entire body.

It is for this reason that I think I would be better served under an Autoimmune Specialist. I'm not talking about a doctor who treats patients for an ailment and that patient happens to have an Autoimmune Disorder. I want Autoimmune Disease to be the doctor's specialty--treating autoimmune disorders, only. Then, it would be even greater if the Autoimmune Disorder Specialist could have a sub specialty (i.e. an Autoimmune Specialists who specializes in Sarcoidosis or an Autoimmune Specialist who specializes in Lupus, for example).

Typically, Lupus patients, for example, are treated by Rheumatologists. Rheumatologists are doctors who specialize in Arthritis and other diseases of the joints, muscles, and bones. Wouldn't it be more beneficial for a Lupus patient to be treated by an Autoimmune Specialists who specializes in Lupus versus a Rheumatolgist who has an interest or extensive knowledge about Lupus? This type of specialization would potentially offer a better course of treatment for patients who are suffering from Autoimmune Disorders.

There are Clinical Immunologists out there. But, correct me if I'm wrong, these doctors seem to deal more with allergies and areas such as Asthma. I have an Allergist/Immunologist and his focus has been on trying to help me to get a handle on my food intolerances. When I've asked him questions about my Autoimmune Disorder in relation to my other issues, he hasn't had much for me.

What will it take? Good Autoimmune Specialists will not simply fall out of the sky. These specialists would need to receive extensive training, and they should be required to keep abreast of the latest research into specific Autoimmune Disorders. With this extensive training, they would be able to do more "outside-of-the- box" thinking. And, research should always include focus groups that are solely formed to receive information from Autoimmune Disorder patients. In dealing with Autoimmune Disorders, the textbook is not always adequate. To get the real, low down story, patient involvement is absolutely essential.

I hope that one day there will be specialists who can truly and fully understand the plight of a person with an Autoimmune Disease!

Perhaps I'm oblivious to the fact that there are Autoimmune Specialists out there. I have tried to find this type of doctor in my city, but I have been unsuccessful. If anyone has a good Autoimmune Specialist (not an alternative or holistic doctor, please), please let me know. I would greatly appreciate the referral!!!


After writing this post, I decided to Google: Autoimmne Specialists (I wanted to make sure I hadn't overlooked anything in my search). Unsurprisingly, I didn't quite find what I was looking for. However, below is an interesting article. The article was written in 2000, but, unfortunately, it doesn't seem that much progress has been made in terms of treating Autoimmune Diseases.

Title of Article: Autoimmune Diseases Poorly Understood, Difficult to Treat


Dystonia's Secret said...

I had seen a specialist in NYC years ago that gave me megadoses of Vitamin C and some of the B's. Dr. Gary Null and Dr. Christopher Callopai (not sure about that last name spelling). It definitely helped but was costly. I went into remission for many years and was able to come off of some serious medication. Now I have something called interstitial cystitis along with IBD and many other related problems...and Cervical Dystonia. I don't know what to do now but there are so many and varied problems, how do you get treated? You're right...wish there were some specialists out there. They have to be related, the health issues but I have to see seven different doctors. Let me know if you find anything...

ChyvonneB said...


I've heard of Gary Null (read one of his books). Although Dystonia is considered a Neurological Disease, I won't be surprised if one day there is an Autoimmune component associated with it. I wish I had a scientific (research) background, then I would do my best to solve these mysterious, "orphan" illnesses. There just isn't enough known about them or other related disorders.

Thankfully, it's (Dystonia) getting some attention in the media, though. I just hope that researchers are busily working on how to better treat and cure Dystonia.

I'll definitely contact you if I find anything out about an Autoimmune Specialist. One problem with Autoimmune Disease is that they are all treated so separately. But, they all have commonalities and that would be a good start in finding out how to treat them better.

There needs to be an Autoimmune Disease Revolution(i.e. People Against Autoimmune Disease--LOL) , because there are way too many people suffering from them (and too many people suffering silently).

Christy (CPJ) said...

I am very much behind you on this - there has to be a better way of treating the whole problem instead of just the symptoms.

ChyvonneB said...
This comment has been removed by the author.
ChyvonneB said...


It will be nice when that day comes (when they work on treating the whole problem). Treating the symptom is only putting a band aid on it--it will only last for so long in the face of stress, allergies, and other environmental triggers.

Lauren said...

I also have graves and dystonia with parkinson's symptoms; I recently saw a new neurologist who said that graves can attack the nervous system and cause these neurological symptoms. No other endocrinologist or neurologist had ever made that connection before. I always thought there must be a connection, and looked for an autoimmune specialist. I found a rheumatologist who specialized in autoimmune diseases, but she was too far away :)

I think most doctors tend to disregard autoimmune as nothing but symptoms that need to be treated, rather than as a systemic illness.