Has anyone any success to do with fibromyalgia and the uptake of levothyroxine drug and T4 treatment?

I have been following the saga with two ladies at Scottish parliament fighting for testing of adrenals and then further info on the thyroid support site. Is it true that there is a cure to be found and it is my thyroid and it's treatment or bad treatment that has given me fibromyalgia ? Shall I ask for immediate tests to see if my adrenals are using the thyroxine being put into my body ? Any help would be great on this subject. I've always said that the people I talk to with fibromyalgia always seem to have thyroid probs .i have talked about this for twenty yrs ...

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15 Replies

  • Hi there - I've not heard anything about this but I'm extremely interested as I've taken thyroxine for 27 years for an under active thyroid - I've had fibromyalgia for 13 years since an accident at work - I would be grateful if you would keep me informed - thank you very much - Tina

  • Hi it's came about that while we are taking synthetic levothyroxine although its going into our bodies it isn't actually helping our thyroid symptoms although our thyroid test come back ok. It is just building up in our bodies causing much damage. There is lots about it on thyroid support sites which will explain properly. Our doctors are not instructed to do further test on the adrenal and the endocrinologist can do numerous tests but its just not done. Google Scottish ladies at Scottish parliament and follow the story. It seems to be very true and I just wanted to know had anyone had any success with their gp or endocrinologist. I too have taken levothyroxine since 1993.Apparently the drug is in trouble in America so I'm trying to find a group here who knew more about it. Many specialist in thyroid support site are saying something needs to be done and for us to get on to specialist and download info to give to them x

  • Hi Lambchop, I am not truly up to speed on this, but there is a Thyroid forum within HU that I am sure would help you to find answers, here is the link. healthunlocked.com/thyroiduk

    I really hope this is of use to you :-)

    Foggy x

  • Thank you I will x

  • There was some talk about this not that long ago in regards to thyroid being the cause of fibromyalgia. Some believe this is the case, but whilst it is true that some people with thyroid problems have a fibro condition it does not always follow that the two are linked.

    If you believe you have abuild up of levo in your system you need to speak to your gp who should be able to test for the levels present in your system. Good luck.

    Fibro is a very different, seperate condition, although there are some overcross of symptoms. There is a very good free app available on i players by azo. Has all the latest research and info on it. Well worth a read. :)


  • Hi ladytelita I'm so new at this so I'm just relating stuff I've been told. My thyroid came before my fibromyalgia and I'm trying to find the link in my case. :-)

  • I have an underactive thyroid which was diagnosed long before my fibro

  • Hello All,

    According to some information on Thyroid UK when a number of Fibromyalgia patients who appeared negative to T3 (the Thyroid test) were tested for T4 it reports 44 % did have Hypothyroidism. I cannot find any information about how many of the 44% had a complete reduction of symptoms & who continued having the same symptoms. I would like to suggest based on my own personal opinion that the percentage that actually had been misdiagnosed as Fibro when actually hypothyroidism is probably quite low. However without reading the research further this is just speculation. This is purely my own interpretation of what I have read.

    I hope this helps . I expect the research will be continued and further information may come to light.

    Best Wishes


  • Hi Emma thanks for that will definitely still research and try to see if its relative to mine :-)

  • I have heard something about this some time ago. At the time some people linked to Thyroid UK were going round telling people that it was a thyroid problem they had, not fibromyalgia. Some people were encouraged to pay for tests and a number of these people were miraculously 'cured' of fibro once they had proved it was thyroid problem they had. However, I know plenty of people who have thyroid problems and not fibro and visa versa. We know there is no cure for fibro, so it's possible these people were misdiagnosed in the first place as some doctors do have a habit of diagnosing fibro when they can't find anything else wrong and they need a label for a patients symptoms.

  • Hi you may be right this doctor on the thyroid uk site and on the thyroid forum here ( I think) both suggest it is. Or that some of my symptoms could be thyroid related.I am always being told that whatever is wrong with me is always fibromyalgia and it seems almost impossible that every new symptom my body comes up with is fibromyalgia. I may be grasping at straws but I would like to know as even if I could get rid of a couple of my probs it would make a great significance to my life. Thanks Deefer for the reply :-)

  • How do you tell if you have an underactive thyroid gland?? I'm just interested, as someone told me this could be me. But wouldn't I be losing weight rather quickly?? X

  • My mam had under active thyroid and she suffered quite serious mental health problems an that's when it was found. I know people who have many different symptoms and overweight being one. Best to get it checked out. :-)

  • some symptoms can include

    heavy periods ; excess facial hair [women];

    fatigue; course hair; feeling cold even in height of summer; being overweight.

    there are many more.

  • I can relate to 3 of these sandra99b, fatigue, always feeling cold and being overweight. I don't have periods anymore, hysterectomy some years ago, and I don't have any excess facial hair. So maybe I'll get it checked. My aunty, a retired nurse, said her GP informed her that a great number of women have an under active thyroid gland after they reach the age of 50!! XX

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