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How Thyroid mismanagement can mimic ME/CFS and resultant crashes

Discussion in 'Hormones' started by bertiedog, Jan 13, 2017.

  1. bertiedog

    bertiedog Senior Member

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    South East England, UK
    I posted this on my other thread about how disappointed I was having PEM after a good day.

    Actually now I have the evidence that it is nothing to do with ME/CFS but it is to do with the withdrawal of the thyroxine I have taken for years in addition to the NDT because now I have my blood tests results having been off the 25 mcg thyroxine for 6 weeks as instructed by my Endo.

    TSH - 0.01 (lower than last time)
    Free T4 - 8.32 range (12-22), 6 weeks ago it was 15
    Free T3 - 4.93 range (3.1-6.8)
    TPO antibodies over the range at 44, top of range was 34
    Thyroglobulin antibodies ok at 32.4, range >115

    So I was right all along, it was a disaster for me stopping the bit of extra T4, I did miss it from the 2nd day and have ended up with regular crashes on my walks, daily severe migraines and a basilar migraine which I haven't had for years. Oh yes a nasty virus too! I am now on Lyrica to help with the daily horrendous migraines.

    This is what you get if you listen to traditional Endocrinologists on our NHS. They go by blood tests and what your height, weight is and then work out what you should be taking. This is complete GARBAGE, we are individuals and have individual needs. By listening to what the Endo told me I feel like have lost 3/4 of the health gains I have made over the years and wonder how long it is going to take to get them back.

    To say I am LIVID is putting it mildly!

    Pam
     
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  2. Invisible Woman

    Invisible Woman Senior Member

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    Yep, I hear ya. It took years before I feel we got my thyroid meds right.

    This really is stupid because our demand for thyroxine is not static. Stress, or changes of season and a whole host of other factors can change our bodies requirements. I was actually told this by a very experienced endo. He told me that he was sick of trying to make other, less experienced docs understand that.

    Besides - the normal range for test results - normal for who? It covers quite a wide range and some people, before developing thyroid problems, might function optimally at the low end of the range, while others might be at the very upper end. Big difference and of course none of us know where we would naturally be, because we only test after we start having problems.

    Here's a wild idea - why not go by when the symptoms are optimally managed?

    Mutter, mutter, rant, mutter....
     
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  3. bertiedog

    bertiedog Senior Member

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    This is what I have been doing for over 12 years but I needed to get on the NHS' books so to speak because I am steroid dependent because of adrenals and obviously that is very serious. My GP does give me my Prednisolone but now I am 68 I felt it was important I should be in the system so the steroid dependency would be flagged up if say I had an accident. (I also wear a Medic Alert bracelet).

    Problem is of course the Endos don't look at the adrenal thing on its own and are always going to look at the thyroid issue too hence me being messed up in this way. What it did do was flag up how useless they are at dealing with the thyroid, something I had always known and that is why I have kept away from them until now. The book and website Stop The Thyroid Madness was one of the information resources that mentions these sort of problems.

    My experience also flagged up how my symptoms mimicked PEM and I thought it was useful to pass that onto others who might want to look at what they have been told about their need for thyroid meds by a qualified Endocrinologist. They must be letting so many people down very badly.

    Pam
     
  4. erin

    erin Senior Member

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    I have similar issues, currently reading "Your thyroid and how to keep it healthy" by Barry Durrant - Peatfield. He is a very experienced and successful endocrinologist, left NHS (UK) because he was not happy with the standard treatment plan. He suggests each individual have a different need, therefore different treatment. He mentions a lot of patients has adrenalin issues, largely ignored by the mainstream science and the NHS.
     
  5. SueJohnPat

    SueJohnPat Sue

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    I have Hashimoto's. I went to a very good endocrinologist. I am on Armour thyroid 60mg twice a day. Not perfect but much better. I asked my endicrinologist why can't there be a thyroid testing machine developed ( like blood sugar monitors) so we can monitor our t3, tsh , t4 and adjust our dosages accordingly instead if feeling like crap for 4 months between tests.

    I have played around with cytomel and have had " perfect" thyroid levels. Not the cause of my Cfs in particular but there is a good Facebook group called Stop The Thyroid Madness. I watched my mother Lay on a couch for 20 years labeled depressed. Her tsh was over 4 or5 high" normal" I was a pharmacy student and noticed her symptoms were typical hypothyroid, I told her and my Uncle (he was a pharmacist and owned a pharmacy) who knew her doctor why Not try low dose of thyroid to see if it helps. I was told that " the doctor knows what he is doing. "

    Never again!
     
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  6. bertiedog

    bertiedog Senior Member

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    My mother suffered with severe depression from about the age of 50 until she died of cancer when 73. She never suffered with depression until then but I believe she was hypothyroid as she lost all her eyebrows around that time too. (I knew nothing about the thyroid then so obviously couldn't help her). In addition my Nana, her Mum was the slowest, coldest person I have ever known and she wasn't very happy either! Naturally I didn't know her when she was younger, she might have been completely different but I think the fact I have Hashimotos problems come from the maternal line of my family but unfortunately neither my mother or Nana were treated. (My Nana had breast cancer too but she did survive.)

    I cannot tell you the number of times I come across women who are over 50 who have very obvious hypothyroid symptoms but are assured by their doctors that their thyroid is fine but instead they are put on more and more very toxic drugs to control their pain. This was especially true in the Fibro group I used to run and it used to make me feel very helpless when trying to support them.

    Yes I have the book Stop The Thyroid Madness and have also been on their Forum but not for sometime. It just makes you realise what a massive problem the correct treatment of hypothyroidism is and that we are actually the fortunate few.

    I think that 2 1/2 grains a day is probably what I need and maybe a bit less in the summer months, time will tell.

    Pam
     
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  7. erin

    erin Senior Member

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    I have Hashimoto's too. I am on syntho T4 but my TSH is not lowered but increased since T4 use.
     
  8. bertiedog

    bertiedog Senior Member

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    I wanted to update this thread because now I have been on the 25 mcg thyroxine for 6 weeks and my energy is back to where it was prior to the disaster of December onwards.

    January and a lot of February was a disaster with non stop viruses and a throat infection, I was ill and unable to do hardly anything during that time but about 2 1/2 weeks ago I realised I needed to restart a herbal protocol that got me very well last year and since then I have got better and better.

    Looks like today I might get up to 10,000 steps and all last week I averaged 8,300 steps daily. Actually I did have muscle problems and sciatica but that is to be expected because my muscles have been so messed up by the lack of T4 when I needed it.

    When I felt so ill last month I had full blown ME/CFS and worried I would never get back to where I was last year but thankfully now everything is back in place my body has responded so well. I restarted 2 Thorne Basic Nutrients to give me the Bs and active folates, 100 mg B2, co enzyme q10, 2000 Aden/Hydroxy B12 plus minerals and fish oil, 2 or 2/12 grains natural dessicated thyroid plus 0.25 mcg thyroxine and my usual dose of Prednisolone 6mg plus an occasional tiny bit of h/c if my energy runs out late afternoon.

    I am rotating the herbs which are a couple from the Cowden protocol, Banderol plus Burbur/Pinella, Houttuynia (from a UK herbal company not Cowdon cos much cheaper), Pau Darco, Tansy Root, Neem and for the first week Echinacea Augustiflora. I keep a record every day of what I take and any reaction.

    BTW When I eventually got a phone consult with the Endo who so drastically messed me up after he supposedly had listened to what I said (plus the blood test result showing Free T4 below the reference range) his closing words were "But you were on too much when I saw you in November because your TSH was so suppressed". Duh, doesn't he know that if we take any thyroid meds with T3 in it then one is going to get a suppressed TSH and then one she look at the level of Free T4 and Free T3 which were perfect when looking at the ranges.

    Pam
     
    SueJohnPat likes this.

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