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Why isn't Fibro an endocrine disorder?
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An_240290 posted:
I was diagnosed with fibromyalgia in 1992. I have had numerous symptoms since I was a teenager. The worst at that time were lower back pain, non-restful sleep, body stiffness and aches, dry hair, thin, brittle nails, swelling in hands,ankles and abdomen, fatigue, extremely dry eyes and mouth, insomnia, chronic constipation, cognitive problems, intolerance to cold and low tolerance to pain, easy weight gain and extreme difficulty losing weight.. I have so many symptoms of inadequate thyroid that I always thought a doctor would certainly see that this had to be the underlying cause of my physical misery. But that TSH test always pooh-poohed my hopes of regaining the sort of health that I knew was just out of reach. After a doctor prescribed synthetic T3, so many of my symptoms improved that I am convinced that thyroid has a large part in fibromyalgia. But my doctor moved and my new resident MD has decided the medication is too dangerous for me despite no obvious side effects. So once again my tongue plasters to the roof of my mouth, exhaustion is creeping back(along with the 'blues'), my nails are thinning and becoming brittle, I have plugs in my lacrimal ducts and despite eye medications, my eyes feel like dry rocks. I lost thirty-plus pounds with my healthy diet and activity, but despite my continued vigilance, I am unable to continue loss and am slowly regaining weight. I fully expect the chronic constipation, painful gas, hair loss, complete loss of libido, cold feeling and cold skin, brittle hair, poor short term memory, poor cognition, swelling in my hands, ankles and feet, and abdomen, to return with its old vengeance. The pain and stiffness were somewhat better, but have already come back, especially in my lower back. I refuse to start over with the some thirty-plus prescribed medications that only made my body feel even worse. Thank God I can retain a little sense of humor; I think its absolutely hilarious that the resident MD wants to send me to a pain clinic and a psychologist to help me to deal with my symptoms...Back to the thinking of the late 80's and early 90's of the conventional medicine. I have already been there so it isn't tears and trauma, this time. Why doesn't anyone look at research by I. Jon Russell M.D, Ph.D. , Robert Bennett M.D., Carlos Abud-Mendoza et.al., Stephen Langer, M..D, John C. Lowe D.C., and Bjorn Johan Overbye M.D.? It is evident that Rheumatology-prescribed medications have little to no effect for treating fibromyalgia symptoms in the short-term and none give long term relief. If research cannot move forward and on to more scientific modules then my guess is that conventional medicine will begin to see Fibromyalgia symptoms as somatoform or psychogenic disorders once again. We need reform of fibromyalgia research. And so far, my personal experience has been that there are few Doctors who are willing to look at research outside of the current paridigm. I believe that many doctors have decided that fibro is either untreatable or too hard to relieve symptoms and, therefore, it may be easier to defer or to dismiss patients. I also believe that I will never give up trying to regain my ability to function, at the very least, on the most basic level. I continue to ask doctors about the aforementioned research, and ask them for any new plausible research regarding fibromyalgia. I would like to know if Dr. Pelligrino has read the research material of any of the aforementioned doctors and scientists and what thoughts would he offer on them.
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Marylyce responded:
I had part of my thyroid removed almost 3 weeks ago. I haven't seen much improvement yet. I have to wait 6 weeks to have my TSH and other levels taken. The drs. said I should have some pain improvement. The only thing I noticed is that my eyes aren't so dry along with my mouth sensations almost stopped. But I just started drinking more water (mostly for kidney stone flushing) and I noticed that the dryness in my eyes and weird muscous membrane sensations in my mouth are not so bad. I'll have to see if I have to take thyroid pills and if it makes a difference. Hopefully you will get some more input from someone who has to take thyroid meds.
 
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suesyorkies responded:
I feel for you, I was tossed into the Fibromyalgia file 11 years ago, and since then tossed from Dr to Dr. all with different ideas, and with Kaiser hospital so many Drs come and go and each one thinks the medication I was given should be changed so I go thru confusion pain and and so many other side affects, they have told me to go to a pain management Dr who in the end was a psychiatrist, who put me on anti depressants, bi polar meds, pain killers, anxiety meds.
I finaly went to a Dr out of Kaiser and she has helped me with the mood swings i have that get so bad with dealing with the pain, she is a psychiatrist, and helps by talking to me about things to do to deal with the negative attitudes I get when I have to explain my condition, the rolling of the eyes I get when I say I suffer from chronic pain. Its been 11 years and I really feel she is helping me work with my condition and not just try to jam medication at me, Like Kaiser has always done.
I hate that with Kaiser once you are tossed into a file they stop helping you or doing any more research to make sure that is what I truly have.
 
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Dollbug responded:
Hello and welcome.....MiMi in NC....sounds like you have really been through a lot....do not quite understand why a doctor would stop a medication which seemed to be helping you.....did you ask what the danger of it was? I do not know how long you were on it...but IF it was working for you....then I do NOT understand....but I do not understand a lot of things that doctors do...

I would like to suggest that you ask the doctor to check your
Vitamin D level....if you have not already done so....low Vitamin D can cause some of us additional pain and it can also affect other illnesses as well....it is a simple blood test but you MUST ASK the doctor to run it....as it is not included (YET) in the normal bloodwork that the doctors do....

I hope that you will also check out the info here under "tips" and "resources" to the right of this page....be sure to read the *member toolbox* and *nutrition and vitamins*.....
I am sure you will find some good tools and tips that perhaps you have not thought of trying.....which just might help you cope better...

There is something that will help you.....you just have to figure out what it is....we are all different and I think this is one reason why it is so hard for doctors to know how to treat us FMers...
and you should also note that what helps one may or may not help another....it takes a trial and error process of at least 6-8 weeks of whatever you decide to try before you should decide whether or not something is working for you....

One last thing.....next time could you please break up you post....so that for those of us who have eye problems can read the post better....

Take care and good luck....keep us posted on how things are going for you....


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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1wareaglefan responded:
I was diagnosed with hypothyroidism before fibro. I've been on levothyroxine for several years, my levels are now in a good normal level, and it hasn't done anything for the fibro pain/stiffness/fatigue.

I read somewhere in an article that said even when the thyroid level is normalized, it doesn't help get rid of the fibro symptoms.

Go figure?!
 
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annette030 replied to 1wareaglefan's response:
I have had FMS for about 17-18 years now, my thyroid levels have always been normal. My doctor checked my T3, T4, and TSH the first few years, now only the TSH is checked yearly.

I personally believe that thyroid problems and FMS are two different problems and are often not connected at all.

Take care, Annette
 
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Booch007 responded:
Good morning Anon...

Had two thoughts one was first , there are a few doctors that are going in to the low dose thyroid medicine box to help with peoples complaints. If not science backed, they have explaining to do in the future if negative events occur. So caution is alwyas there for the MD's and law suits and explaining themselves is always heavy on their heart. So some are more conservative then others.

The other thing I thought was that The thyroid is so valuable to so many functions in the body...almost the conductor of the orchestra.....so having it at top function is so beneficial. Too much will harm you and too little will harm you too. There are effects for both avenues. To stop something that was working does GIVE ME THE WILLIES......I hate reading this stuff. You have many symptoms of hypothyroidism. Can you see another physician and share this story?

We are not classed under an endocrine title at this time , as the research has it in our brains....it should be in neurology. A couple of years ao at the big rheumy meeting there was a lecture to pass us off to neurology (now I don't know if it is beacuse we are hard to treat, to get us away...or if it is for real.) BUT I am in neurology for myself. Fixing your body chemistry as best you can is the key here.

The toolbox you create. I am now on Savella which is a SNRI, but more a NSRI as the norepinephrine side of this med is 3 times that of seratonin. Hence it is pushing the body. Adrenal fatigue has also been a thought out there for us as an issue. This med accomplishs this too...adrenals are helped.

I am sorry you have gotten in a hole here with medical management. You must be your own advocate. You sound educated in reading and know you***, go for it. Defend yourself and going with the "I need help doc mantra" "Why take this away and my symptoms are all here again?"

If no satisfaction go to another physician to find asistance. It took me 9 doctors to find my *physician champion. I now see her partner, no questions unanswered or problem not attempted to fix. She is neurology with a specialty in myofascial issues (strokes, MS, CIDP etc.adding the FM crowd there too). I have referred many to her for help. The validation of our problem was the biggest gift and then a plan...the second best, and it takes time to get that right.

I just want to hug you, ask you to be strong as an advocate for yourself and be gentle with the doctor..it is his license and thinking you are working with. Be gentle yet firm and clinical. Hit him with the clinical, with what your symptoms are and how they subsided...write it down ALL down and bring it in.

The written word for me is so much stronger. If he is not in defense mode and just sees* the syptoms all presented he might see it. No labwork is perfect but it is the standard we use to see* inside people. Try this mode with him.

Best of luck...I hope you don't lose too much hair before you get this back in place...(bring him your hair!! show him!!!) I love a good visual.

O/T: A good visual....a patient came to me in a wheelchair, in his underwear the other day....slippers, a shirt..unshaved and a mess. Two minutes of exam, I was sending him to the hospital...but I went and got his attending to see him....The VISUAL was all I needed. Pale, trouble breathing the exam not good...BUT THE UNDERWEAR*. THE VISUAL had me. Some one is very sick to arrive in the office in their underwear (boxers). He wouldn't go...but exentually despite our office measures he was admitted. So I said later...he had me at underwear. The attending laughed and agreed, you didn't need a stethoscope or the echocardiogram,chest xray, the labs....all that we did. HE showed us how sick* he was with the underwear. (You just don't care when you are that ill).

So good luck, I hope you get the care you hope for and it is the right fit of physician. Be gentle but clinical. Hugs, Nancy B
 
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Mark Pellegrino, MD responded:
Here are my thoughts: FM is considered to be a central nervous system disorder leading to problems with pain processing. Included in this central nervous system "network" of abnormalities and dysfunctions are problems pertaining to the autonomic nervous system (esp sympathetic hyperactivity) and problems of the neuroendocrine system.

The neuroendrocrine system is what constitutes our glands and hormones etc, so the thyroid, hypothalamus, pituitary, adrenals, etc are involved in FM. A number of researchers have published on FM-related abnormalities such as growth hormone, HPA-axis, estrogen/androgen, and even vitamin D (more a hormone than a vitamin) as you've mentioned.

Fortunately the research continues and more and more doctors and others are becoming more educated. Individual doctors certainly vary in their understanding and acceptance of the presumed pathology in FM,and there is a wide range of thought on what constitutes an "abnormal" endocrine problem related to FM. I tend to treat "low normal" lab values because I find that many need hormone levels more in the mid to higher range rather than the low normal range.

So I think there is recognition among the knowledgable ones (you included!) that FM is related to the endocrine system. It's not simple, as everything is so complicated with fibro, but there is a relationship. We will continue to learn more...

Dr. P
 
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MagSam responded:
Hi. I have been taking synthroid medicine since I was 35 years old and am now 72. I developed fibro about 5 years ago. So as far as I know, thyroid and fibro (in my case) are not related.


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