After a TT in January - difficult time since and then the endo reducing my levo dose I now have been told there is something else going on!

After very toxic thyroid it was removed in January and I have struggled with energy and pains in my limbs since. Gradually got the 100 Levo dose up to 137.5 but was told a couple of weeks ago that despite the tiredness and pains I had to reduce to 125 as my heart rate was too fast. I was devastated and endo did not seem interested in what I thought were low vit results.

I went to see my gp and he confirmed that it was necessary to reduce the Levo as my heart rate was too fast and the TSH too low. He however thought that the Vit D was too low and is wanting to do more blood tests as he suspects an issue with parathyroids. Tell me why the Endo does not think this way. It seems that the GP and I know more than she does.

However, he also did some tests on various pressure points on my body (a lot of painful poking really) and suggested that what has happened is that the issue with the thyroid has triggered fibromyalgia (which he said can often happen - he described the thyroid as holding a gun to this condition). Strangely enough my 26 year old daughter has had this also for 6 years. The symptoms seem very similar to those produced by hypo. So I am going to try some of the drugs he prescribed but I am not happy with this as a long term solution as they did nothing for my daughter - her life has been made bearable again under the control of a Chinese doctor and lots of acupuncture. My GP is going to start acupuncture on me next week to see if this can bring some help.

I have spent a few days feeling very cross with the world that something else now has to be considered and that the days of high energy and no pain seem even further away.

Yet again I have to look at my life style (not that it is very stylish) and consider what changes are to be made. I am wise enough now not to set myself up for constant failure so I need to reduce my expectations of myself. This just puts more pressure on my husband though as he has to keep going and pick up my slack.

Has anyone else been told that they have fibromyalgia after a trauma with the tyroid?

18 Replies

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  • Hello France, to have a GP who recognises there is a link between fibromyalgia and the thyroid is rare so a good brownie point for him. Dr Lowe believed this but convincing the medical world is another story. I pushed this very point to my GP in recent weeks and he didn't comment but he did agree to send me to an Endo. At the Endo appointment he arranged blood tests for T3 because I asked and also a bone profile and cortisol test. I await the outcome.

    I had a partial thyroidectomy some 46 years ago and the aches and pains became vengeful when I hit my late 50's. I have not as yet found a solution but I would encourage you to have your T3 tested and find out if you are converting T4 adequately.

    If it was me and my heart rate was too fast I would go along with a reduction in my levo, in fact my GP did lower my doseage recently too and I cannot honestly say I have noticed any difference but we are all different.

    I am hoping the Endo will allow me to trial some T3 along with my T4 in the hope it helps to alleviate my joint pains, we shall see.

    Sorry I cannot be more positive but it is good to share, all these joint pains are miserable indeed. Personally I have not resorted to pain medication as it does not get to the root of the problem and there are side effects to add to our problems, I try to remain stoic although it is not easy.

    Kind regards

    Joyia

  • Oh not the old fibromyalgia excuse wheeled out again :-( When you have no longer got a thyroid, the issue will be lack of thyroid hormone and all the attendant issues that brings France, far more than a sudden onset of Fibromyalgia which after all is not a disease but a collection of symptoms, a syndrome.

    Your thyroid produced both T4 and T3, now they are giving you just T4 (levothyroxine). There is every chance your body cannot convert this in sufficient amounts to the active T3, hence the fatigue/pain and so on. Demand a T3 test. Have a full blood count and full iron panel, as well as B12 and your Vit D. You are spot on, they must be optimal, not just normal to even hope to convert this T4. I would also find another endo. This makes so me mad. I was brushed off with fibromyalgia when the magic bullet LEVO failed to make me well post Thyroidectomy. I have no trace of firbomyalgia now that I am on T4 and T3 meds x

  • Interesting laladrew, I am wondering if the missing ingredient for me might be some T4. I had a TT ten years ago, and have been trying to find the magic formula to get well. Things have improved greatly on T3, all the aches and pains have gone, but still suffer fatigue. What T4 meds' and how much are you on, and what level of T3, would be interested to know please? x

  • Hi Margo, I now take Erfa natural desiccated thyroid. It has T4/T3/T2/T1 and calcitonin in it, all things my thyroid used to make, albeit these are pig hormones. I did briefly try T3 only but I was very ill at the time with low adrenals after five years on levo so didn't get on with it. I just agree with Dr Skinnner's comment to my GP, " it seems sensible, if removing these hormones from the body, to actually try to replace them all". I was on 2 grains Erfa (i think about equiv. 125mcg levo ) but I have lowered it to one and a half grains now that my iron and b12 are optimal and I need less.. It's brilliant, I want less meds and more life xx

  • Thank you for this information laladrew, food for thought. x

  • Excuse my ignorance, but is Erfa the same as Armour? I did take Armour under Dr. P, but I was not converting so am doing better on just T3, although as I mentioned I am not well yet. Is it possible to get Erfa on an NHS prescription? Was wondering if I add some pig hormones, I too can cut back on my 60mcg of T3.

    Thank you

  • Did they use nitrous oxide as an anaesthetic? If yes please google "nitrous oxide & B12". It inactivates all the B12 in your body, particularly bad if you have an undiagnosed B12 deficiency.

  • I'm with you on this hampster, the connection is strong here. I had two surgeries in 24 hours and was mega deficient in b12. Something in yesterdays Telegraph about the link between Alzeimers patients and operations.

  • Bloody fibromyalgia, sorry, it a diagnoses, specialist give to patients when a cause ain't found. Fibromyalgia is really lo thyroid,or the result of a injury that has not been fully investigated or healed, for example, if you hurt your neck you hold your body in a aquard position, like being tense, then you have spine pain, shoulder pain and so on creating more symptoms. My autoimmune d, hashimotos, came on after a accident, antibodies got turned on and started attacking my thyroid, eventually hypothyroidism. Fybro fasically means wide spread pain, with no cause. Dr John Lowe, explains in detail the connection with fybroi and thyroid. Hope this helps, I have fybro, wide spread pain and thyroid is the cause.xx

  • I cannot comprehend how a so-called doctor can look at a person with no thyroid, who has overt signs and symptoms of hypothyroidism, can then decide their problem is something else. My doctor does exactly the same!

    What would you think if you went to a mechanic with a car that keeps stalling and he tells you it's a flat tyre? Laugh in his face I suspect.

    I am on 125 now but for 23 years I was on 150 and reasonably well. I worked at two jobs, and kept my home clean, cooked, washed, ironed. you name it. My doctor cut my dosage to 100 for 7 years and almost killed me. Yet every time I went to him he blamed everything except the economy for my problems. He even made me fill in a depression questionnaire in the hopes that could add anti-depressants to the long list of medications I was given (many of which I refused to take). At that point I had found TUK so I put my foot down.

    Unfortunately by then my heart had been damaged so now I am really struggling to increase my thyroxine - so I am doing it really, really slowly half a 25mcg tablet at a time.

    The reality is though that you and I most likely would be more healthy with a full replacement including T3, or Armour. But if you stay on Levothyroxine only, don't accept a lower dose than 150 - before the TSH test, they would not have considered less than 200 as an adequate dose for an athyrotic patient.

    Incidentally, fibromyalgia is not a diagnosis. It is a fob-off, a symptom descriptor. It means 'muscle pain'.

    Imagine going to the doctor with a chronic earache, worrying you have something serious going on. You say 'Doctor, I have had a pain in my ear for a month and it won't go away' and he says, 'I know exactly what that is. Otitis Myalgia'. You look it up. It means 'Pain in the ear'. Would you be impressed with his medical skills? I thought not.

  • Amen to everything you said there marram and how you said it! :-)

  • I agree!

  • Hi France , I to was diagnosed with fibromyalgia and could hardly move , Ialso had low vit d and b12 . I refused the drugs as I had had no symptoms before I started the Levo !! I aldo went back to my GP . My lovey doctor ( and the doctor in the next room ) got together and told me Levo does not suit everyone !!! I started on armor and now I feel fantastic not a pain in sight ! I'm not saying this is your answer but just wanted to share it !! I had 8 months of hell and this sight was my lifeline . Educate yourself as much as possible and don't give up , good luck xx

  • Fibromyalgia (which I don't have) goes with ME (which, allegedly, I've had for 37 years). They aren't diagnoses, they are dismissals. "Go away, I can't be bothered to think about this enough to work out what tests I need to do to find out what is really wrong with you".

    When will doctors ever learn? (Rhetorical question, obviously)

  • rosetrees and Ldepluzer you summed up exactly how I feel about this. It makes my blood boil that we should be please to have a label for pain that they don't bother to find the source of.

  • That old chestnut fibro!

  • So now it seems that everything is just too complicated to work out. So I have stopped the medication for fibro, and I am going to try and come off the anti-depressants and anti anxiety that I have been put on and try to just get down to the levo. Sometimes I think the cocktail does not help.

    I wish there were experts that could sort this out - even a decent computer programme you would think would be possible.

    thanks for comments

  • Have you checked your BP, pulse and temperature in the morning? This could give you some more information.

    You could well find that your Basal Metabolic Rate is not very high, and you may be getting the fast pulse later because of other deficiencies. It would be good to check all the other possibilities. It's encouraging that the GP is prepared to check Vit D.

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