Going round in circles !! Don't know which way to turn !!!

I was diagnosed with fibromyalgia about 14 yrs ago -although had symptoms long before & not long after hypothyroidism. Had increasing doses of levo to 100 mg. I asked to see an endo privately in January as never really felt well since & was totally fed up with all the symptoms - he tried me on 20mg Liothyronine (split dose am& pm) & reduced levo to 75mg . I couldn't tolerate so he reduced levo to 50mg but in June he stopped Liothyronine & now back on 100mg & 125mg levo alternate days. I've gained about 5st & whatever I do cannot lose any - this in turn is causing hip back problems & I need an op at some point. (Also had foot surgery & wear orthodics always).

Recently I am feeling really shaky & wobbly which is worrying me & very breathless with any exertion - I don't sleep well at all & have got used to all the aches & pains everywhere especially in the morning so don't know if it is hypo/hyper or fibromyalgia symptoms ?? I walk with a stick & sometime cannot even stand let alone walk - He even suggested taking orlistat pills to help reduce weight which I tried but not sure they are good with thyroid meds?! About 2 yrs ago I had an angiogram & have irregular beats (to do with the electrical impulses) - cardiologist prescribed beta blocker & was on BP pills but I have reduced these as I'm sure they make it worse!!

I've seen a rheumatologist for my fibro - he suggested Vit D as did the endo - so where do I go from here ?? although it sounds like it I am not a hypochondriac - I just want to get on with my life but have to continually sit & sleep most days for about 2/3 hrs otherwise I would not be able to function at all.

Sorry for the long moan - but as many others here just don't know which way to turn next?!!! Any thoughts or suggestions?

Thanks for listening Chris

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14 Replies

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  • What about your iron - has anyone tested this as, no matter what thyroid medication you take, if your iron is not at optimum levels you'll have problems.

    Moggie x

  • Hi Moggie - just found my results from back in May -

    normal electrolytes- glucose 5.6- calcium 2.37- normal liver function- cholesterol 5.2-

    Free T4 17.3- TSH 0.28 - haemoglobin 141 -IGF-1 levels normal

    another test in June - TSH 0.2 that's when he said 100/125mg levo alternate days& Vit D 2,000IU per day

    Don't really understand these though ?

    Thanks

  • Hi Moggie - just found my results from back in May -

    normal electrolytes- glucose 5.6- calcium 2.37- normal liver function- cholesterol 5.2-

    Free T4 17.3- TSH 0.28 - haemoglobin 141 -IGF-1 levels normal

    another test in June - TSH 0.2 that's when he said 100/125mg levo alternate days

    & Vit D 2,000IU per day

    Don't really understand these though ?

    Thanks

  • When will doctors ever get that fibromyalgia is NOT a diagnosis, it's a symptom? No-one is ever given a diagnosis of "a headache". You have one, you don't NEED a diagnosis - you want to know what is causing it. Same with fibro - you don't need a diagnosis, you have it, you want to know what is causing it so you can reduce its symptoms (/rant for the day).

    Have you had your iron and B12 levels measured?

    What problems were you having with liothyronine and why did your endo stop you taking it? Have you thought of trying Natural Dessicated thyroid (hard to get anyone to prescribe that) or Nutri thyroid, for which you don't need a prescription (it's what I take).

  • hello rose trees

    Thank you for your reply - you rant as much as you like - that's exactly how I feel at the moment !

    Is haemoglobin -iron levels ? Mine was 141 in May ? Not had Vit b12 as far as I know! Liothyronine was stopped as my heart raced all the time & I felt very stressed as if I was racing inside -I did ask him about Natural desiccated thyroid - he said if I couldn't tolerate Liothyronine then it wouldn't help!! I've not heard of the Nutri thyroid that you talked about? How do I go about getting that if I decide ?

  • Part of the problem (as hampster1 says below) is that the symptoms of hypo/hyperthyroid, B12 deficiency and adrenal problems are similar. Testing is the key and doctors give up far too quickly.

    It's daft to say that if you couldn't tolerate the T3 then you won't tolerate NDT. That's just an ignorant comment by someone talking out of an orifice other than their mouth, without the benefit of brain engagement.

    Most of us here have complex problems - it's why we're here. Just as an example - I tested low for Vit D, Vit B12, cortisol and hypothyroid.

    Thyroid meds won't work effectively if you are low in any of the above, plus several other minerals which I'm not sure of right now.

    You are looking for optimal levels, not just at the bottom of the "normal" (I hate that term) range.

    To test your cortisol levels - order the 24 hour saliva cortisol test from Genova UK. It's easy to do - you just spit into a little jar 4 times in a day, freeze and send the sample back via courier.

    The Nutri Thyroid can be bought from here at a good price yournutritionshop.com/produ...

    It's sold as a health supplement. Start with, say, 1 tablet and see if it helps. If you tolerate it, build up slowly.

    Do you have Dr Peatfield's book "Your thyroid and how to keep it healthy"? I've seen him and the regime of supplements I take is mostly as suggested by him. He does clinics around the country and phone consultations if you can't get to him. His office number is 01883 623125.

    PS - you can see him talking about his work here webofstories.com/play/53949

  • Have a look at this symptom list:

    b12deficiency.info/signs-an...

    Everything you've said above is consistent with untreated PA / B12d. I urge you to have a good look around the above website, everything you need to know about testing, diagnosis and treatment is on there.

    Low iron/ferritin, folate and vit D are also usual with this condition, as well as with hypothyroidism which you already know you have. Studies show that something like 40% of patients with hypothyroidism also have PA, and that's not including the large number of people whose serum B12 test result falls just within the normal range. So that % is probably much higher in reality (which is why I always go on about it).

    I'm curious, you say they've recommended you take vit D, did they actually test it?

    Hampster

  • Hello hamster - thanks for this reply

    Oh my - what I don't say was I had a seizure in my sleep on 30th July - I've had MRI & EEG to check & saw neurologist last week - all ok luckily - so hope this is just a one off! But I can't drive again until feb next year - so really really fed up about this as well as every else! So maybe it's connected to B12 & Vit D ?????? Don't think it was tested - I've just been going & paying £100-£125 for about 10 mins - all to be told to take Orlistat to help reduce my weight!!!

  • They should never recommend taking vit D without testing - low vit D coupled with high calcium can be a sign of parathyroid problems - so you really need vit D and calcium tested.

    And B12/folate testing should be standard as far as I'm concerned, given the neurological damage it can cause it's shameful that so many neurologists ignore it. I'd get back to the doctor and ask for the tests. Bring the symptoms list if necessary. If they tell you that you haven't got anaemia you need to point out that serious neurological damage from B12 deficiency can occur in the absence of anaemia and macrocytosis, this is well documented in research.

    If they still won't test there are lots of private blood tests available, but cross that bridge if you hit a brick wall.

    H x

  • Hi again H - I've decided that I'm going to try & get an appt tomorrow as I feel so awful - I'm just going to bed as I'm so exhausted & shaky - I have another appt with the endo in Dec & noticed he has marked to have Vit D tested - but I'm not waiting that long !!!! So will go armed with this info - thank you very much - will be in touch how I get on !!

  • What you really need to ask for is your B12, VitD, iron, ferritin (how much iron your body has stored in reserve) and folates. Don't just ask for one, as for them all but if GP gets funny stick with B12 and iron and then mention endo wants vitD checked.

    The results you posted, I'm afraid, are pretty useless as you have put no ranges down. Every lab has different ranges so to give us results with no ranges is like asking us to guess.

    Good luck today.

    Moggie x

  • My daughter had similar problems with fibro etc , was back and forth to rhuematologist , vit D you name it she tried it

    levo, t3 endless pain killers etc

    just 3 months on NDT has changed all that

  • My daughter had similar problems with fibro etc , was back and forth to rhuematologist , vit D you name it she tried it

    levo, t3 endless pain killers etc

    just 3 months on NDT has changed all that

  • This might just be me but I have had fibromyalgia diagnosed about 20 years ago, hypothyroidism ten years ago and Vit D and B12 deficiencies more recently (now corrected) but I noticed (when I went on the Weightwatcher's diet three years ago and changed what I ate) that my fibromyalgia symptoms are directly related to the amount of sugar I eat.

    I know that if I eat sweets or sweet things during the day I won't be able to sleep that night for joint and muscle pain and stiffness. It feels like a sugar allergy!

    I can keep the fibromyalgia at bay by cutting sugar out of my diet. It's such a huge relief and I really recommend anyone with fibromyalgia try eating sugar free for a week and seeing if there is a difference. Definitely worth a try.

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