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Adrienne Dellwo

Thyroid Disease in Fibromyalgia & Chronic Fatigue Syndrome

By September 21, 2011

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Fibromyalgia and chronic fatigue syndrome are multi-system illnesses. They hit you hard in multiple ways, and confuse doctors of all specialties because not everything can be explained by the one system they focus on.

In recent years, a new term has been gaining acceptance -- neuro-endocrine-immune. That reflects the scope of these illnesses accurately and conveys their complexity.

Still, we don't tend to get a lot of information about the interplay of the systems involved. With fibromyalgia, a lot of the focus in on neurology. In chronic fatigue syndrome, you hear most about the immune system. The "endocrine" part tends to be forgotten.

The Endocrine Connection

Endocrinology deals with hormones. Remember that we have a bunch of hormones, not just the ones related to gender. The grand over-seer of your metabolism and how your body uses energy from food. It controls bone growth and muscle function. It plays an important role in lung and heart function, mood, and -- something we recently discussed here -- the health of your hair, skin and nails.

If you have fibromyalgia or chronic fatigue syndrome, odds are you've got problems in at least some of those areas. You probably won't be surprised to hear that a huge percentage of us have thyroid problems, and that they can exacerbate our symptoms.

Some experts believe that our conditions start with thyroid dysfunction. Now and then, you even come across someone whose symptoms disappear once they get proper thyroid treatment. However, many more of us have proper thyroid treatment and don't improve, and some have no diagnosable thyroid problems at all.

My personal belief is that this theory is probably accurate for a large subgroup of us, and I think it's important for all of us to have our thyroid function tested regularly. (And really, any marginally competent doctor should test for thyroid problems in someone complaining of fatigue, aches and memory problems.)

Thyroid Problems & Resources

Thyroid function is complex, and while research pretty clearly demonstrates that it's somehow involved in our illnesses, thyroid disease does need to be diagnosed, treated and managed separately.

My About.com colleague, Thyroid Guide Mary Shomon, has extensive information available on her site. To help you find the articles that are relevant to you, I've compiled them here:

I've used Mary's page a lot to deal with my own thyroid problems. I became hypothyroid (low) in the late 1990s, and then I was diagnosed with autoimmune thyroid disease in 2009.

Do you have thyroid problems? Are they well managed? Has your thyroid treatment improved your fibromyalgia or chronic fatigue syndrome symptoms? Leave your comments below!

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Comments
September 21, 2011 at 9:03 am
(1) FoolishWitch says:

Hi, I just wanted to tell you that my dr has hinted at me being Fibro, but is wanting a Rheumatologist to diagnose me. I see him in a week and a half. I have been miserable, feel like I’ve been ran over by a truck. I’m sure you know the feeling. lol
Getting to the point, I was diagnosed in the ’90s as well with hypothyroid. My ‘alleged’ fibro showed up this year. ( I personally think I’ve had it a long time though). I have noticed when I take my levothyroxine in the morning and I go back to sleep, I dream more. In fact, I told my husband the other day, that for the past 2 years, I have only been dreaming after my meds in the morning.

September 23, 2011 at 3:37 pm
(2) Andrea says:

That’s amazing, I told my husband and Doctor the exact same thing. Once I started taking the medicine, I dream constantly, but cannot remember any of them. They come one-after-the next.

September 21, 2011 at 11:27 am
(3) Valerie Little says:

Yes I tell people I used to have fibromyalgia/chronic fatigue and now I don’t! They don’t believe me I have graves and had my thyroid destroyed by rai 1995. My thyroid crashed a few moths later and I was put on low dose synthroid. I never felt the same after that treatment. Gained lots of weight had bone chilling fatigue etc for many years. My endo adjusted my meds by tsh and kept me in thyroid misery. About 2005 I was so achy, tired depressed I could barely walk. I went to my endo and this time I said I am not ok. She said it is all in your head take an antidepressant! I persisted so she sent me to a rheumatologist because she said I must have another autoimmune disease. He took 9 tubes of blood and nothing came back abnormal. He diagnosed me with fibromyalgia and wanted to put me on prednisone. I said no it was not a cure! I was determined to prove fibro was caused by hormones, esp thyroid. I was fine before my thyroid was destroyed! I read read and researched some more about the connection. I found alot of information about thyroid and adrenal connections to fibro. I used dr john lowes protocol called metabolic rehabilitation and now I am doing great! I needed to get enough thyroid hormone(not by labs alone) the right kind have my adrenals supported eat right and supplement in what my diet did not supply like vitd and fish oil. Wella I am doing great! I am going through menopause so supporting my progesterone/estrogen hormones has been needed(I hoped it wasn’t necessary) In my mind fibromyalgia is just hormones out of whack, thyroid adrenal and sex hormones

September 22, 2011 at 6:45 pm
(4) kim says:

Valerie I have been diagnosed both with fibromyalgia and hypothyroid, am chronically fatigued and am a Type 1 diabetic….I am taking meds for symptoms but would much rather use a “natural cure”…I am very interested in how you did it…Would you share…please!

September 24, 2011 at 6:08 am
(5) dale says:

Valerie, thanks SO much & truly happy,– no THRILLED for you to figure this disaster out! I have been on thyroid meds for a good 26 yrs. & just continue to decline with the Fibro/Cfids. Nothing I try makes any diff. & have spent a fortune. Now I am on the Guai Protocol & Coconut oil, but need to take one or the other as they outdo each other. Been ill since childhood & now 65. I just cannot stand having something so poorly understood to make it all worse. Medical drs. are usually the last ones to know anything about this, so you really found a great one to help you. Continued great health to you!

September 24, 2011 at 6:15 am
(6) Guest says:

Hi Valerie, although in the very early stages of treating my hypothyroid and hypoadrenia and yet to see the full improvements, I am in complete agreement with you. Fibromyalgia is just a label. The UK NHS blood tests for thyroid function are at best useless. I am seeing Dr Peatfield inin the UK who treats in the same manner as Dr Lowe, I believe. I am convinced I am finally going to feel well on this protocol but it’s not going to be easy as I am 48 and have had this for so many years. Great to hear you are doing so well. Let’s hope more people discover about the thyroid-adrenal-fibromyalgia connection and quickly. Finding a gp who will treat our hypothyroid (despite the worthless blood tests telling us all is well) is paramount. Best wishes.

October 29, 2011 at 10:11 pm
(7) Janice Brown says:

I have hyperthyroidism and fibromyalgia. I have had it since the early 80′s from a drunk running a red light and hitting my Blazer broadside. The hormonal and enzymatic connections are not always applicable for everyone. Hematological ranges are just that…ranges. Borderline upper and/or lower levels need to be guides. Many of us have atypical levels that are “normal” for us. One of my physicians suggested a relationship between environmental allergies, asthma, and autoimmune conditions. She advised me to take a tablespoon of locally produced honey daily. The honey did lessen the frequency of asthma attacks, but has not lessened the severity of my pain. At this point I am willing to try almost anything. This is a most interesting discussion. Unfortunately, fibromyalgia has become an erroneous diagnosis recently. I hope that many of you are able to find a reason and a way to manage your pain and it’s accompanying symptoms.

September 23, 2011 at 3:49 pm
(8) Mog says:

I had CFS first for 8 years, then my thyroid went hypo and I became much iller. I was put on thyroxine but it took at least 18 months for me to feel any less ill than I did when it went wrong. Since I went hypo-thyroid I feel consistently bad and ill all the time – when I had “just” CFS, I had more good and bad spells, now it seems to be all bad. I’m not convinced the thyroxine works very well. I now take some liothyronine T3 as well, but don’t really notice any difference in how I feel because of it. I do have the Hashimoto’s antibodies, so it’s obviously auto-immnune, and perhaps that’s why I’ve felt so ill with it. As usual, the doctors aren’t interested in any of it. They say if I’m not feeling better on thyroxine, it must be the CFS making me feel ill. Nobody listens when I say I didn’t feel so ill before the thyroid malfuntion.

September 30, 2011 at 11:42 am
(9) leorising says:

This, oh yes, this. I went to my PCP and my rheumy a couple of years ago, telling them, “I just spent 8 months bedridden.” Concerned looks, tongue clucking, and sorrowful shakings of heads. NO DANGED TESTS. Nothing.

Two years later, I gather enough energy to assert myself a little bit. Turns out I have Hashimoto’s, which we just found out in May of this year. Oh, and why did we find out? Because I asked for the thyroid antibody tests. My PCP wouldn’t give them to me, but my rheumy trusts that I’m not a hypochondriac and ran the tests. She didn’t think of them, though, I had to suggest them. Thank the gods for the Internet!

Thyroxine was useless for me, I’m glad I was able to convince my rheumy to prescribe Armour thyroid. I’m starting to feel more like a human being now, granted one with fibro and ME/CFS and a host of other chronic problems.

So frustrating when one doc expects you to just be lying for the attention, and the other attributes EVERYTHING to fibro. Argh!

September 23, 2011 at 5:01 pm
(10) Susan says:

I have been DX’ed with both fibromyalgia and hypothyroid (and chronic fatigue, among other things). I have finally found a doctor that goes by the Free T3 test and uses Armour Thyroid from a compound pharmacy. (He does bio identical hormone therapy). He bases my dose not just on the results of the Free T3 but on how I am feeling also. I am up to 3 grains (just started 2 days ago) and still haven’t noticed a difference in pain or weight. I’m still hoping.

September 24, 2011 at 1:04 pm
(11) linda says:

i’ve had a thyroid problem for 40 yrs. now there checking my para thyroid ( completly different than the thyroid) am having a nucler test. i’ve been told i have a tumor on one of the para thyroids there’s four of them. symptoms are the same for fibro. i think everyone should have there’s checked. they don’t usually check that unless you have high calcium. but it don’t have to be high. it’s just a blood test please get yours checked. i’ll let you know how i feel after i have the surgery which i hope won’t be to long after this test. hang in there.

September 27, 2011 at 1:02 pm
(12) Maggie says:

I have all the symptoms of an underactive thyroid, although nothing shows up on the blood tests. Which tests need to be done and is it possible just to have it not show up?

September 30, 2011 at 11:47 am
(13) leorising says:

As far as I know, a couple of conditions, specifically Hashimoto’s thyroiditis and thyroid hormone resistance, will keep your T4 at “normal” levels. That is usually all a doctor will test for, unless you’re showing other signs. I had to lose half of my hair before anyone would test for anti-thyroid antibodies, which is the test for Hashimoto’s. If I hadn’t had that test, I’d probably be mostly bald by now and bedridden (again).

The about.com site Adrienne linked to is a good start in gathering information about these conditions. Good luck!

October 19, 2011 at 2:35 am
(14) Nathan says:

Migraines and Thyroid issues follow the maternal line in my family, but affect many of both genders. I have been Diag w/ FM and have had migraines for 80% of my life. I realized early on that this was genetic and neurological in nature. Hormones play a key role in my pain as everything started to escalate once puberty hit. Physical and neurological stress are known triggers as well so there is no doubt that this is a multi-faceted condition.

October 29, 2011 at 11:16 pm
(15) Anne says:

Great articals, I was diagnosed with Fibro in 1998, but in 1990 I was diagnosed with Hypo thyroid, my Doctor told me the levels were so low they figured it had been going on for a very long time, I had just recently switched to this Doctor after trying to tell my old doctor I was not feeling well and was told by him to lose weight and quit smoking and I would be fine…grrrr. But even after getting my levels in normal range the fatigue and pain did not ease up much at all.
My new doctor had told me that my T 3 was in major over drive to make my TSH in normal ranges, felt better after beginning to take my Levothyroxine but for some reason I had to have my dosage jacked up about once every 2-3 years.., am now taking 275 MG! My Vit D keep tanking also, last test it was at a 12 so have been on supplement of 2000 a day. Does anyone know or had this go on also, ie thyroid dose needs to be upped n upped?? I dont know if my PCP has ever done a test to check for the Antibodies ..but am going to ask. This Fibro s wearysome, I am tired of being tired and hurting all the time, I cant take normal meds for ihe pain becouse I am unfortunate enough to be extreamly sensative or allergic to most of them, and after having 3 abdomanal surgeries its is no fun not getting even relief from pain with that! I have tho had some hope with some of these articals, am going to check in with my PCP and ask about the antibody test…

December 30, 2011 at 3:32 pm
(16) karen says:

I have fallen far back this year. I am again really cold when I lay down and have to use a heating mattress pad to keep the chill from my trunk and hands. It’s so unusual. Or is it?
I don’t think I’m getting enough oxygen. Can I get a pulseOx thing to monitor myself at home? My kids have a heart rate monitor app on their phones which is really handy. Karen

January 2, 2012 at 8:39 pm
(17) Carie says:

(16) karen says: Karen I believe Costco carries the pulse ox meter that you can place on your finger. If they do not, probably some other drug stores or pharmacies may carry them. Often they have a larger inventory available on-line than in their physical stores.

I was diagnosed with hypothyroidism in 9th grade. I started gaining weight when I was in elementary school. The summer of 9th grade after being put on thyroid, I lost 40 lbs. I was on Synthroid for over 30 years. I was married and then moved around a lot and so didnt have a consistent physician. Now every doctor I go to tells me my “thyroid tests are normal” and refuses to give me a prescription. My morning temperature is consistently in the 96 degree range. I am on Soc Sec Disability with Medicare only now. When you have Medicare, you can not ask for tests unless you can cough up the cash to pay for them. Medicare has virtually become worthless since all of the cuts Obama has made. I have had my regular office visits cut from every 3 months, to 6 months and now 1 time per year and am told if I have an urgent problem to go to the ER (which Medicare will not cover).

Being on a limited income, it is hard to afford supplements on a regular basis. That being said, I was taking a thyroid supplement (not RX) for about 2 months. When I ran out, within a week, I was back to having freezing feet and hands, also numbness. My hair is also back to falling out. So I would say from what I’ve read and experienced personally, being cold can definitely be linked to hypoT.

February 20, 2012 at 3:18 am
(18) Bebe Shrdn says:

I have CFIDS and FMS.Feb 12,2011 I was rushed to E.R. Drs said I would have been dead 3hrs later if I didnt get there at that time.I was down to 60pds,had a heart attack caused by a THYROID STORM from an overactive thyroid and Graves disease.Had underactive thyroid before so didnt know it could switch.Had no idea of my thyroid disease at time til it almost killed me.Knew I was getting sicker,but blamed most on CFIDS/FMS til a few mnths before it all.Never even heard of a Thyroid Storm and have alot of med knowledge from being sick all these yrs,reading,research,etc.Trying to make this brief.Had thyroid removed,found thyroid cancer and Graves when they removed it.Spent 2 mnths in hosp.Ty for warning others.You may just save a life.Bebe

January 7, 2014 at 12:31 pm
(19) http://thyrominesource.com/vitamins-for-thyroid says:

I am experiencing Thyroid & I am in fact concerned & unsure how to handle it. I hope this helps to a better extent.

April 27, 2014 at 12:00 pm
(20) bio identical progesterone says:

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