SURVEY - Thyroid and Fibromyalgia

[jeblondon]

Have any one out there been diagnosed with both thyroid problems,(particularly Hypo/hashi's), AND Fibromyalgia?

I AM CONVINCED THERE IS A CONNECTION

Since my PT 6 months ago, I have had increasing problems with Fibro pain.  I was diagnosed with Fibromyalgia 5 years ago and generally manage the symptoms with various pain medications.  However, since the op' the joint pain has gotten worse again and I am now convinced there is a connection. I don't really understand all the stuff about the 'auto immune system' but I have been told that mine is showing signs of being 'compromised'. Specifically the Anti Nuclear Antibody test was 'positive' and my Thyroid Peroxidase was 'significantly' raised. My Tsh/T4 levels etc are all well within in the normal ranges. I am being referred on to a Rheumatologist now!!

I just so want to be well and get the pain under control again.  I am hobbling around on very sore legs at the moment and trying to piece this jigsaw of symptoms together.

So - Fibro or Thyroid???  Or both!!!

Let me know your thoughts please

J

[stella5349]

I could get bashed in my opinion here on this but my belief is that Fibro IS a Hypothyroidism symptom and really has no place as a DX.

I think Fibro is the body's way of reacting to other issues going on within the body and does not have a place to be a diagnosis on it's own.

When I was so unable to move a while back with almost everypart of my body in pain and soreness. My doctor wanted to label it as Fibro. I am not a firm believer on Fibro being a real issue for a Dx and think there has to be a root issue to cause it.

I don't feel it should be a Dx and be labeled as a situation.

After I changed things around with my thyroid medication and lowerd my TSH number and increased my Free T3 levels the pain is gone.

So I do think the more a patient is kept at a TSH level on a thyroid issue (that may be within normal ranges - yet it may not be right for their body)  that is why the pain is present.

[ChitChatNine]

We have a new member Plateletgal who is a CL of CFS/ Fibro .... I hope she'll stopy by!

C~

[Totie]

Here is my ordeal with being dxd with Fibro about 2 years ago.

Diagnosed with peripheral neuropathy in Jan 2007, (neuro 1) did not believe i had that

Told no, you were missed diagnosed it is actually fibro  April 07 (neuro 2) did not believe i had that. At first I accepted it, but i just did not have the symptoms i was supposed to have. Fatigue was never part of the picture, neither was the level of pain i would read about. Let the symptoms go for a while. Started noticing weight loss and that is what finally made me seek a 3rd opinion.

April 2008- New PCP.
Found mass in pelvis area (waiting on neurosurgeon to decide on that)
Submandibular gland will be removed, mass growing in it.
Possibility of being over medicated on the thyroid side of it.

All i can say, is I did not have Fibro as they kept telling me i did.

[jeblondon]

Thanks for these replies so far - I really appreciate your taking the time.

Stella - yes there is a lot of controversy here in the uk too as to whether 'Fibromyalgia' is in fact a 'disease' or a 'symptom'. (And some docs who think it is a state of mind!!!).
When I was origianlly diagnosed as having FM, the Rheumatologist I saw did very specific examination of me and used various pressure points etc to establish that as he said I was 'typical' of Fibro patient.  I have since done some reading and the pain points he singled out are particular to Fibro pain.  HOWEVER, it is hard to get some other Docs to agree to this - I was even offered anti depressants to help me.  'I am not DEPRESSED'! I almost screamed at the Doc in question, 'I am in PAIN'!!
I am just trying to put together some ideas about what to expect with this new development and my being sent agin down the Rheumatology road.  I wonder what he will have to say.  Apparently this new one 'specialises' in Fibromyalgia so I'm guessing he will not try the anti d's thing LOL!

Anyway, it's all a muddle to me now - do I have thyroid problems or not?  

By the way my TSH is 3.66  (range0.27-4.2)
my free T3 is 5.0 (range 2.8-7.1)
my free T4 is 15  (range10-24)
so according to these numbers I do not need thyroid meds...........................

Hey ho

Any other thoughts appreciated
Jx

[PlateletGal]

* Many people are often misdiagnosed or prematurely diagnosed as having fibromyalgia when they have another illness. It is important to rule out everything before getting a fibromyalgia diagnosis.

* Dr. Kent Holtorf is a physician who routinely treats fibromyalgia and CFS patients says that "close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."

So there is a thyroid condition that goes along with fibormyalgia and I've read that CFS patients are at high risk for thyroid cancer as well. (that could include fibro patients... still waiting for more info on that)

* 29% of fibromyalgia patients have a positive ANA titer.  Dr. Garth Nicholson's research on autoimmune diseases has found that, "when mycoplasmas exit certain cells, such as synovial cells, nerve cells, among others that can be infected, they can stimulate an autoimmune response." --- I believe this is what happens with not only fibro patients, but patients who have autoimmune diseases as well. It would explain why so many people with autoimmune conditions or these syndromes have symptoms of other autoimmune diseases.

* Dr. Garth Nicholson studies have also found high frequencies of mycoplasmal infections in fibromyalgia and CFS patients.

* In 1994 researchers at the University of Texas Health and Science Center, department of medicine discovered an elevation in the level of the neurotransmitter Substance P in the spinal fluid of patients suffering from FMS. RedLabsUSA is a national lab that apparently is able to diagnose both Fibromyalgia and CFS. The test is still a research test at this time.


So there is a fibromyalgia - thyroid connection, but there are also people who have been misdiagnosed with fibromyalgia. And on top of that... some fibromyalgia patients can go for years without a fibro-flare.

[bncrump]

I have hashi's and was told by the rheum that I have Fibro. I am with Stella on this one. I do not think that it is a DX at all. I flat out told her that I will not accept that as an answer. She was very understanding and told me that FM is real and does cause real pain. I don't doubt that there are some who completely believe that this is what they suffer from. I do not though. I know that my problem is not anything else besides my thyroid. No lupus, No RA, No Lyme, nothing neurological, nothing...Rheum said anti-depressants and I said NO...already tried it and it didn't work. I feel you when you say you just want to scream at them. Just because you hurt doesn't mean your in pain! URGGGGG......

Is it a coincidence in Hashi patients? I don't think so. I agree with Stella that it is a situation. Reading all the posts on this forum, it is easy to see that there are so many people suffering from the thyroid...there are many, many situations that can be encountered.

Good luck at the dr and hope all goes well. Maybe you should see if your endo will try thyroid meds just to see how you feel. Maybe 3.66 is just too high for you, even though it falls within normal limits. It's worth a shot! Good luck!

[PlateletGal]

I think the rheumatologist suggested anti-depressants for you because they seem to help fibromyalgia patients sleep better and also decrease the muscle spasms in fibromyalgia patients.

Here is all of the information anyone needs about fibromyalgia (and CFS) and low thyroid :

http://www.fibroandfatigue.com/documents/clinical/Are%20all%20CFS%20FM%20patients%20low%20thyroid.pdf

Best,

PlateletGal

[jeblondon]

Wow! thanks for your comments.

Plateletgal - Goodness you have done your research! Chit chat said you were a good source of info :)
My ANA is showing 'positive' and the comment beside it on the sheet is 'suggest repeat to ***** significance of weak ANA'.  This is why he is referring me on to the rheumatologist. I just feel this is not going to come up with anything.

bncrump - I agree with you too - I practically begged to just be given a try with the thyroid meds, (low dose), just to see if any improvement. (This is someone who hates taking pills).  I do not want to be on meds at all but anything can help I'll try it now!  He flat out refused saying that in his opinion they would not help OR they may help a little initially but in his experience would only lead to a life long dependence on thyroid medicines in ever increasing amounts.  
I wish I knew what he hopes the Rheumatologist might do?

sighhhhhhhhhhhhhhhhhhhhhhhhh

[PlateletGal]

You are welcome to join us in the fibro / CFS forum. In early October, we will have a Dr. Garth Nicholson posting on our board answering any and all questions related to fibro, CFS, Gulf War Syndrome, autoimmune diseases and probably cancer as well. (Dr. Nicholson was a HEM/ONC physician and I read that he was diagnosed with CFS and now has been researching mycoplasma infections and their role in all of these conditions.

[jeblondon]

I will try to get onto the forum and ask a few questions!  Thanks for the invite :)
I have followed the above link you provided and it certainly makes interesting reading doesn't it?  
My Fibromyalgia problems started during the time i was taking a drug called 'synarel' which shut down my reproductive system for 6 months to help me deal with endometriosis.  It basically puts your body into a menopausal state by acting  on the pituitary gland.  I was given hrt at the same time to help with the worst of the meno' symptoms but I still felt ghastly during these 6 months.  It took a long time to feel better - even though it did work on helping with the endo' pain but long term I wish I had never been given that drug.  I still do not know if there was a possible link with that time and developing 'fibromyalgia'.  Will I ever know I ask myself but I was a lot younger then and just did as the docs told me would help.

[PlateletGal]

I believe your story because researchers are still trying to figure out the connection between hormones and autoimmune diseases. The majority of people with autoimmune diseases (and fibro or CFS) are WOMEN.

What concerns me is that we are seeing more allergies, food allergies in children and other autoimmune diseases. Some physicians think some of the factors responsible for this are vaccines (some of them have L-form bacteria in them), pesticides and other chemicals.

According to fibro / CFS physician, Dr. Mark Shaw, some of the triggers that cause fibro or CFS are :

Parasympathetic nervous systems are compromised and damaged. The condition is then maintained and exacerbated by musculoskeletal imbalance in the thoracic region causing irritation of the surrounding nerve ganglia.

2/ a viral/ chemical exposure which entered your system causing brain and spinal cord lesions, simultaneously leaving the Sympathetic and Parasympathetic nervous systems in a state of chaos. The condition is then maintained and exacerbated by musculoskeletal imbalance in the thoracic region causing irritation of the surrounding nerve ganglia.

3/ a viral/ chemical exposure which entered your system causing a temporary brain injury to the area of the brain that deals with immune response.

Types 1 and 2 will cause the most prolonged type of Fibromyalgia/CFS, with 3 being mostly related to the type of post viral illness PVFS caused by EBV, in otherwise healthy patients this will usually dissipate over a period of 6 months to a year and should not necessarily result in or be classified as Fibromyalgia/CFS.

[PlateletGal]

As a nurse, who was on the same protocol, wrote to me :

The virus was found loitering at the scene of the crime. That does not mean it perpetrated the crime, it may have only been an 'accessory after the fact.


Of course we may be genetically prone to catch these illnesses... but some physicians believe that mycoplasmas have the ability to alter our DNA. I know that some toxins do (remember Erin Brockovich and her discussion with the toxicologist about Chromium VI ?)

[PlateletGal]

Okay... just realized that my last post conflicted with Dr. Shaw's info. I knew that when I posted it, but should have commented on it. I don't have an opinion on what causes these illnesses... other than I believe the trigger (even what Dr. Shaw has said) is viral or bacterial.

My mom has Sjogren's syndrome, which is classified as an autoimmune disease. When I looked up the possible causes for Sjogren's, I saw that they were the same possible causes as CFS and fibromyalgia !

[stella5349]

I think your TSH is too high and you have low thyroid function casiung your pain.

I think you should be speaking to someone who will listen and get you on at least a trail of thyroid meds to bring down the TSH range to a 1.0 or slightly higher and increase your Free T3 and see what happens

Just my thought.

[TXMomOfFaith]

I saw my gp a few months ago complaining of fibro type symptoms. She said that thyroid problems often mimic fibro stuff. She said to wait after  my surgery to see if I still feel this way..............I do. There as to be a connection, everyone I know that has one, has the other or something similar.

[jeblondon]

Thanks again for your comments every one.  
I kind of agree with you Stella - I just wish he would listen to me and treat my SYMPTOMS not the lab readings.  He is adamant though that he will not put me onto thyroxine until after I see the Rheumy and have my next set of blood tests done.  Gosh this is so frustrating and doing a lot of reading over the last couple of days there are so many people with HYPOthyroid problems that are experiencing or being diagnosed as Fibromyalgic.  Oh well - lets hope I get a referral soon.
J x

[stella5349]

Good Luck on that referral.

At least when you go back in now - you have more information than when you started.

[jtssteph]

May I just add another "I might be caused by your thyroid" condition. I cannot tell you how many people I have talked to, heard about, and read about that have conditions and if you trace back one factor to each of them, it is the hashimotos (anti-thyroid antibodies). Epstein Barr Virus, Fibromyalgia, Chronic Fatigue Syndrome, and Bipolar Disorder.  I have the worst thyroid that has been seen by the endroconologists I have seen. My tsh was 490 the last time we checked it. I knew it was bad, because I had gained 40 pounds in less than 3 months. I went on the armour thyroid *works much better for my body* and a heavy-duty dose of T-3 Cytomel. Guess what? Have already lost 36 of those pounds a month later.

I' know that  the anti-thyroid antibodies attack the thyroid because they see it as a foreign threat. What I'm wondering is if these antibodies attack other parts of our immune system making us susceptible to other illnesses and disorders such as the Epstein Barr Virus, fibromyalgia, chronic fatigue syndrome and bipolar disorders.

Does anyone else have some of these or all of these things that they have dealt with?

Just an interesting thought.

[katty33]

Hello
I am new to this.  I am 33 and I have had hypothyroid for 7 years.  I have always taken my meds (a low dose of levothyroxin (levothyroxine)) and presently feel awful.  Very achy and tired.  My concern is that perhaps my meds are not working effectively.  I even taking them have a 4.6 thyroid level.  Is this normal or possibly too high for being medicated?  I appreciate any suggestions info b/c I am becoming very down about the way I feel.