What to do next ????

Hi I'm new here - just been told of this site by my osteopath -!!!

Since a teenager I've had numerous bouts of depression/anxiety/panic attacks resulting in spells in mental hospitals/wards, taken nearly all the anti depressants on the market (which always made me worse).

As far back as I remember I've had muscle aches/pains & never really felt the 'buzz' that others seem to have after exercise. I always felt rough after any exercise sometimes including normal activities. Heavy periods & anaemia were normal for me - but after an uncomfortable menopause fortunately now at 58 these are a past problem,

After years of never feeling 'right/well' I was diagnosed by a rhematologist in 2001 with fibromyalgia!

I was told that there is no successful treatment/drug that can really help with this- it is thought that one main cause is not ever reaching deep sleep - so your body cannot replenish/restore - therefore I'm always trying to cope on an 'empty' tank - so to speak !!

My diarys always seemed to be full of doctors appointments & in 2007 my GP diagnosed hypothyroidism & i've been on levothyroxine since, finally resting on 125mcg.

So for the past 12 years I've been trying to adapt my life living with the associated numerous symptoms from both these conditions.

Last December 2012 I had a 2nd opinion by another rheumatologist privately who confirmed that indeed I do have fibromyalgia !! still the same result - try gentle exercise to help sleep & maybe try a new anti-depressant !!

Now feeling severe pain/exhaustion & not getting anywhere I've just had another private appt with an endocrinologist.

He reduced my levothyroxine to 100mcg & added 20mcg Liothyronine half pill am/pm.

This is for 2 months to have a blood test before my next appt at the end of March. I also did a 24hr urine sample to check my pituitary/adrenal glands & other systems.

I also take Bisoprolol & Lisiniprol for irregular heartbeat & high BP.

But I'm having horrid symptoms I.e palpitations & throbbing everywhere including headaches & neck shoulder pain- Struggling to walk /backache & extreme fatigue & sweating at night. Although I'm so tired when I'm trying to sleep/rest it feels like inside my body is going mad !!!

Has anybody felt these symptoms too whilst taking these medicines ??

I'm trying to persevere but obviously don't want to feel worse than I did before !!!

Don't quite know what to do next ??

Thanks for reading this

Chris

7 Replies

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  • Hi Chris,

    Your experience is not uncommon, unfortunately, years of ill-health probably due to the reliance on the TSH as a diagnosis.

    If you can get a copy (or get a new thyroid gland blood test) of your blood test and postthe results on a new question including the ranges (figures in brackets as labs differ) someone will comment on them. If you haven't already had a B12, Vit D, iron ferritin and folate ask for these to be done too as they are very important. Many people are deficient in B12 and VitD.

    I was awful on levothyroxine with awful symptoms such as you state nearing the end of your blog. All have gone now but I had to change to a Natural Dessicated Product which GP's are told not to prescribe but some do.

    This is a link (it is an archived one so some links within may not work) but you can also click on the side which is Fibroymyalgia Research Foundation. It is a big learning curve in order to get well and the GP's cannot connect all our symptoms to hypothyroidism and treat each one separately. Before the TSH, people were medicated upon their clinical symptoms or at least given a trial.

    web.archive.org/web/2010122...

    So many people are told they have mental problems when in fact they may have a low T3. Levothyroxine should convert to enough T3 but some have difficulty converting. T3 is required by every single cell in your body, of which the brain contains the most.

    Regards

  • Hi Shaws

    Thank you for responding so quickly - I have read up regarding the link between fibromyalgia & hypothyroidism & yes I agree completely with your comments.

    The blood test I'm to have in 2 weeks before my appt includes -

    FT4, T3,TSH 9.00am cortisol, FSH,LH,IGF-1,Prolactin

    this is on the pathology sheet). - haven't a clue what these are?

    I will ask for a copy of this after - Ill also request copy of the last blood test that the rheumatologist did in December too & post results back.

    Not sure I should continue with the new prescription until I see him on 26th?

    Or perhaps I should call & explain my symptoms to him - maybe he'll change the dose??

    Maybe like you it is not for me - he did talk about alternatives & say I might experience palpitations but at the moment I don't seem to be able to much except sit around or try to sleep!!

    forgot to say I've also suffer with severe foot pain - had a operation last July & have worn orthotics for years (which I can't now do without)! - Needless to say my weight has rocketed & I know that doesn't help - but doing all I can in the food front with no results either!!

    Apart from all that ---- all is hunky dory !!! No joking apart I have learnt over the years to pace myself etc., but oh it would so nice to be able just to get up & do what I fancy without thinking it all out first !!!?

    Thanks once against- this is such a useful site

    Chris

  • Hello again Shaws

    I've just read Dr. Lowes research as above - could you explain what TSH suppressive thyroid hormone is please ?

    Is this T4 or T4 ? Levothyroxine or Liothhyronine ?

    Thank you

    Chris

  • TSH means thyroid stimulating hormone, which means if your thyroid gland is failing, your body sends out thyroid stimulating hormone to try and get it going and that is why the TSH rises. When it reaches 10, GP's will give you levothyroxine - some if you are very symptomatic will prescribe earlier than this. Many GP's prescribe enough to keep you within a 'reference range' but we feel better when our TSH is below 1 or lower when on meds. Suppressive means that you are taking enough medication, either levothyroxine or liothyronine (T3) or Natural Dessicated Thyroid hormone to make your TSH undetectable. Some doctors think you will have a heart attack but undertreated thyroid can also lead to heart problems.

    So you have TSH (thyroid stimulating hormone) T4 (levothyroxine - synthetic) and T3 (liothyronine - synthetic) and Natural Dessicated (NDT) which is made from pigs or cows thyroid.

  • mmm Chris, another patient, suffering, struggling and diagnosed wtith fybromyalgia, like the Rhumi said, sorry, there is no cure other than Meds with lots of side effects, you probably had issues all your life related to Autoimmune and thats why you are still having smptoms.

    they are 24 ways the thyroid is effected and only one cure, which is thyroxine, which if you are one of the lucky ones, it helps.

    I too and many have the same smptoms, in my opinion its down to deficiences ,mineral and vitamins, food intolerance like gluten, allergies, gut problems, !BS, to name a few. With myself I am trying to esablish all this stuff by private testing, I have just been informed thet my thyroglobulin antibody is attacking my gland and mercury could be the culprit.

    I do drink about 10 coffees aday, no fruit, health tea though and smoke. I used to be a proffesional muay tae boxer and felt fab after the exercise, I needed my brain to function.

    I no longer do exercise as the smallast task caues debilitating pain. Thyroid Uk have helped me unravel my immune system and give me strengh. I am not cured yet and still have issues, I am finding out the cause first.

    hope this helps. x

  • I'm also diagnosed with Fibromyalgia, as well as CFS and Hypothyroidism. The T3 has made a big difference to me, although still not quite right. I still can't do cardio exercise as this makes me really ill and still feel the exhaustion through part of the day, as well as lots of the other symptoms.

    I also believe that Fibromyalgia is quite often a case of under/mis treated Hypo.

    I just wanted to say, that when I first started my T3, I think I was a bit hyper for the first week or so, I put this down to my body adjusting.

    Not sure how long you've been on T3 but give it a chance before moving onto the next step, which maybe NDT???

    Good luck :)

  • Hi Have you had thyroid tests recently? TSH, T4 and importantly Free T3. If your FT3 is below range, the T3 sounds a brilliant idea but , I think you need to start again with it and take half the dose, every other day and gradually build to the required dose over about 3 weeks. Some of us need to take medication slowly when new ,especially with multiple problems. Do you know you must take the Beta Blocker after your thyroid test? otherwise you have a false result.

    Unless, I have misread, your info you need a vit D test ( hormonal ) as you may well need treatment with D ,after a corrected calcium result as this must always be in range. It takes 3 months to be at optimum in the blood and repeat tests and increases until Ok, then occasional tests.There are also other helpful tests surrounding the thyroid. Given your other problems I should consider asking to see an endo, of your choice ( not GP`s!)

    If you have not had a copy of your bloods + ranges ask the GP`s receptionist, fairly routine.

    best wishes,

    Jackie

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