Fibro symptoms disappeared: I have been... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Fibro symptoms disappeared

zoobie profile image
11 Replies

I have been on T4 for 20 years! Changed to combo about 4 months ago - didn't feel any different so I stopped the Levo all together and now Im only on T3. All my fibre symptoms have disappeared and I feel fantastic!!!

Can there be a connection with T4 and Fibro, so many of us get diagnosed with Fibro after being on Levo for some time.

Interested to hear if any more fibre sufferers have any experience with T4 meds

11 Replies

Hi zoobie I know statins can make fibro very painful and i refused to take them for this reason, I wouoldnt be surprised if the "T" pills did this to you.

zoobie profile image
zoobie in reply to

I can't take statins either, I tried 2 different types. The heart specialist gave me Repatha instead. My cholesterol level dropped from 8.1 to 3.8 within 4 weeks. I suspect the T3 helped more that the Repatha though

in reply to zoobie

Well I really hope the fibro stays away for you, I have had a 3 month reprieve in the past and thought "hurryay its gone" got a bit mad on the house jobs and it came back-- Pacing pacing hun keep it away!!

zoobie profile image
zoobie in reply to

thanks NurseGladys - I've been like that through the years to, but this time it just feels different - my body feels at peace!

in reply to zoobie

Absolutely wonderful- I knew a gp who had fibro-his went into remission after 14 years!

CarolineC57 profile image

Hi Zoobie - have you looked at the Thyroid-UK forum here on Health Unlocked? There are a lot of people on there who report fibro-like symptoms (or pain, etc, which has been (mis-)diagnosed as fibro) resolve with correct thyroid treatment. Personally, I'm taking T3 rather than T4 and quite a few of my symptoms have resolved or improved (eg. my insomnia is much improved). I still have severe joint pain though - but it looks like that might be due to an auto-immune condition now (hypothyroidism and auto-immune problems often go hand-in-hand). I, personally, believe my fibro diagnosis was a mis-diagnosis. Anyway, it's well worth looking at the T-UK forum if you haven't already done so.

Al10 profile image

Keep hearing of Thyroid folks whose Fibro resolves when treated correctly. One person kept asking her GP about thyroid but was fobbed off. Hypochondria? Eventually she was hospitalised as she was so sick. Turned out she did indeed have Thyroid issues. Took a while to sort her out meds wise but when it was right, she was cure of her Fibro. Working full time and busy busy busy. A massive change from being lethargic, exhausted, aching, tummy issues, depressed and so on.

Is Fibro simply untreated thyroid problem? Or is it a disorder that encompasses all hormones? Our modern world is full of chemicals that are hormone disrupters. Maybe Fibro isn't a clear cut hormone issue?

I've read about people who fluctuate in their ability to produce effective thyroid hormone. Their hormone levels mostly show normal or low normal when checked. An odd low is meaningless if it pops up on next reading. But are some still people negatively affected by these fluctuations? Treating someone with fluctuating hormone levels is going to be tricky.

Those with low normal thyroid seem to have higher cholesterol readings which can be an indicater the thyroid is struggling. NICE wont recommend treating thyroid if readings are within normal range even if it is persistently low normal. I do however keep reading about people who self treat with natural desiccated pigs thyroid and feel better. I think anyone wanting to try this treatment needs a therapist trained in this field.

I know someone with Hashimotos. She couldn't recover until her thyroid was removed, as they simply could not get the meds right with her thyroid randomly wanting to produce it's own thyroid. So I can understand the professionals being reluctant to treat people who are simply low normal.

It is an interesting theory that needs research.

Mdaisy profile image
Mdaisy in reply to Al10

Morning Al10

I agree and think more research into Fibro is needed plus Thyroid and Lyme testing needs to be adequate here in the UK to find the exact numbers of those with Fibromyalgia and those who actually have a Thyroid Condition, Lyme Disease etc. This revolves around this testing to encourage the UK to do full Thyroid profiles not just TSH and interpreting them as they should be and to all who present with these similar symptoms.

I think due to all these variables I don't think we can definitely conclude that any of these Hypotheses by anyone can be confirmed. Dr Lowe's research for instance was not published in as a peer reviewed paper and so everything needs more research before any correlation can be made, if any.

As other members have mentioned misdiagnosis of Fibro has and can happen especially with the issues in test Thyroid levels, so people may feel better as they are now being treated for the correct condition.

You may find this post interesting;

Fibromyalgia has been reported to disruption the hypothalamic–pituitary–adrenal axis so whether the thyroid hormone is effected by these changes or vice versa is a continued debate. I truly believe without research in many areas and improvement in UK testing plus all that comes with it as outlined above we are not informed to say whether either one causes each other or what the connection may be.

More research please :) ...... plus better UK testing.:) I would support any petition in the UK for this and any for Lyme disease as I believe this would help people can a timely diagnosis they deserve whether it be Fibromyalgia, Lyme or a thyroid condition.

Hope this helps

Emma :)

Al10 profile image
Al10 in reply to Mdaisy

Interesting article. My family have Thyroid, hashimotos, renards, Hypermobility, ME, Fibro, dyslexia, aspergers.

And the thyroid bit keeps coming up. Those with Low normal ask if the fact that others in the family have thyroid issues, needs to be taken into account and the answer is always no. And the symptoms are due to? Stress?, depression, fibro, ME, aging? Take your pick. Maybe the drs are right, but there is no real evidence because they refuse to do the full testing.

It seems to be forgotten that Thyroid and higher cholesterol are linked. Thus heart disease too. (higher death rate in fibro patients) The Medics would rather prescribe more statins than fully investigate why cholesterol is rising which could be related to thyroid issues. Cholesterol is not always simply diet related.

Statins too are linked with Fibro like aches and pains, and brain fog. They are not the cure all we all hoped they would be.

If the fibro treatments were effective at keeping symptoms at bay that at least would be a relief but for most of us, they don't, and we desperately need an answer for what is causing all these crazy symptoms. It is no wonder that we fibros seem paranoid as we desperately seek our answers.

CarolineC57 profile image
CarolineC57 in reply to Al10

Interesting you mention high cholesterol as this is one of the things which has been positively affected by me self-treating (after initially seeing a private doctor) with thyroid hormone. My cholesterol was above 7 and my GP wanted me to go on statins (which I refused) but it's now down to 4.5. It's the old chicken and egg question, I think - which comes first thyroid issues or fibro (and a whole host of other conditions)?

zoobie profile image

There are no conclusive research results for this issue. There are however many topics on the subject. I was treated with T4 alone for 20 years. (took them 6 years to diagnose and they made me feel like a hypochondriac) Have had IBS, H.Pylori, gastritis and this year hospitalised with Diverticulitis. I was given Prozac (fluoxetine) for pain relief for Fibro (which was diagnosed 10 years after Hypothyroidism) which helps a bit. My endo wasn't interested in my thyroid and kept doing tests for diabetes, after 3 months she decided I didn't have diabetes and then told me my thyroid labs were OK and to keep on with the T4. I then told her I wanted to try T3 (which she was not pleased about and said NONE of my thyroid patients are treated with this) She actually shoved a prescription across the desk for Liothyronine and said you can't get it here (Switzerland) but try a different country. I haven't been back to her since. Because of all over body and joint pain I was sent for a whole body CT scan. Apart from 2 broken ribs, a knee prosthesis which has loosened for the 3rd time some nerve damage in the opposite hip, they found artherschlerosis which is caused by high cholesterol. My cholesterol was measured to b 8.1. I was in trouble. I suspect this was caused by T4 only treatment. After starting on T3 (and one injection on Repatha (a cholesterol busting drug for people who can't take statins) my cholesterol is now 3.8 - which I suspect is totally down to the T3. Doctors need to learn to treat the symptoms and not the bloods. My mum and Aunt both died of heart disease which I suspect was cause by untreated thyroid disease. I just wonder how many other thyroid patients have dangerously high cholesterol - its not a routine blood test! but one I think should be requested by everyone suffering. It doesn't harm anyone to just try T3 to see if it helps.

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