TSH, T3 & T4 now normal, but still unwell and off work!!!!

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I was diagnosed with Hypothyroidism 2.5 years ago and put on Levothyroxine 25mcg, then 50mcg and eventually 75mcg. However, in March 2015 I became really unwell, so was eventually referred to an Endocrinologist who put me on a new medication (Liothyronine), which did not improve my symptoms sufficiently, so he also put back onto Levothyroxine (75mcg) as well.  I had my Adrenal glands tests and told that although the levels were slightly low, they were not the cause of my problems.  So, after further blood tests, my Endo' confirmed my results were now within the normal range, therefore the symptoms I was still experiencing of fatigue, joint pain, shakiness/tremors and headaches must be occurring due to Chronic Fatigue Syndrome or M.E.

I think it is too coincidental, that my thyroid levels were low, my adrenal gland test showed a low production of adrenalin, yet as I am still suffering it must be CFS or ME.

Has anyone else experienced these problems or something similar?  Or can anyone give me any advice on the situation I find myself in.  I am at my wits end as I have been off work since March 2015 and am so desperate for this to be sorted out once and for all to be able to return to work and normal life.  If I cannot get to the bottom of my problems soon I know my employer, who has been absolutely fantastic, will decide to medicallly discharge me from my employment.

Please help!!!!

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  • Posted

    Hello Kimberleyb:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's Thyroid disease and I am only on Liothyronine because T4 (LEVO)  did not work on me.

    First of all, many of us who have Thyroid disease tend to have adrenal issues.

    When you have low adrenal hormone you will feel bone pain, joint pain, get headaches, and shaking.  All of that is from low in the adrenaline and cortisol blood levels.

    So they can replace that by adrenaline injections.  The body does not like anything "too high or too low", and you should have a blood cortisol level done and or a 24 hour urine test.  The ENDO doc is the one to see about this.

    We normally make enough adrenaline via the adrenal glands and you should have a CAT scan or MRI to see if you have a growth on there that may be bothering your adrenal gland.

    I once had some symptoms of pain and it was sharp in my back with nausea, I had a CAT Scan and they saw a growth on my adrenal gland.  Please ask for the above blood work and imaging so you can see.

    Chronic fatigue makes you sleepy and you can have joint pain and it is related to a build up in phosphates in the blood. It does not cause shaking though and low adrenaline does!   You could ask for a Phosphate blood level to see. Then you will know.

    Please keep me posted on how you do,

    Shelly

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    • Posted

      Hi Shelly,

      Thank you for your message and all the really useful advice.

      I am seeing my GP on Thurs, so will ask about the tests you recommend.

      I will gladly keep you informed how things are going.

      Once again my sincere thanks,

      Kim

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  • Posted

    Your story sounds almost identical to mine. Had the same meds as you- levels normal but still symptomatic and exhausted and pain in my knees. Also been diagnosed with chronic fatigue syndrome and, like you, think it's too much of a coincidence!!

    I have a feeling it's the levothyroxine side effects making me feel worse. Have you heard of NDT? It's natural thyroid hormone rather than synthetic. Not available for free on the NHS, but my endo said he would be happy to prescribe it if I wanted to trial it.

    I'm at my wits end to and it winds me up when they fob you off with chronic fatigue syndrome!!

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    • Posted

      Thank you so much for messaging me, it's such a relief to know I'm not the only one in this situation, although I wouldn't wish anyone to suffer as we are.

      I will do some investigating re: NDT, as that sounds interesting.  I have asked both my GP and the Endo about natural Thyroid hormone, but both stated that it is not available in this country.

      Please keep in touch about your progress.

      Thanks again,

      Kim

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    • Posted

      Hi Kim

      It is available in the UK just not on the nhs (although nhs doctors can give you a private prescription for it). I have details of an endocrinologist who was happy to prescribe it to me if you would like his contact info- he is in the Reading, Berkshire area.

      Caz

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    • Posted

      And I know the name of a pharmacist in London who will supply NatureThroid by post providing you have a prescription. He also stocks WP Throid (aka Westhroid-P) which has no fillers.in it.
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  • Posted

    Hi Kmberley,

    If you have low cortisol levels you won't be processing thyoxine properly.(the 24 hour urine test is reported to be a more effective method of checking cortisol levels). I presume if you're off work, funds are low, so the route for this is your endo.

    Have you had your ferritin level checked? It's done via a blood test. Your Ferritin level is extremely important - it needs to be 70+ for your body to be able to process thyroxine so ask your GP for vitamin and mineral tests.

    Also get tested for vitamin B12 and vitamin D.

    To summarise, make an appointment with your GP and ask for vitamin B12, vitamin D and ferritin tests (all done by a blood test) and an urgent referral back to the endocrinologist. Ask your endocrinologist what can be done about low cortisol and say youve read the thyroxine patient information leaflet which has low cortisol as a contra -indication.

    After the blood tests, start taking a multivitamin containing selenium and zinc as these support the immune system. I'll private message you the name of the one I use that's cheap. Plus I would make advance monthly appointments to see your GP and cancel them if they are not needed (something crops up for me every month). All the best.

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    • Posted

      Hi Barbara,

      I am so grateful for your message and suggestions for the different tests and taking of multivitamins.

      I look forward to receiving the name of the multivitamin you take.

      I will keep you informed how things are going.

      Many thanks again,

      Kim

       

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