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I have been hypothyroid for 20 years and stable. For 5 months my thyroid has started to go all over the place i am having blood tests every 6 weeks i am either over compensated or under. gp cannot seem to get it right. i am having vacant episodes which are only momentarily, muscles ache so much when exercising or walking  no energy, drive feeling really wiped out.When gp increases thyroxine i am awake most of the night palpitations and throbbing in legs. I have been taking HRT for 5 years prescribed after gynea op, no problems. Now my TSH low and T4 low. Paid to go see a womens health specialist who had put me on Bio Identical hormones i have been on these for 3 weeks no improvement. Has anyone any ideas on what could be going on i am now thinking maybe i have adrenal or pituatory gland problem. i would appreciate any help as have always been so active.

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  • Posted

    Research the connection between BPA (plastic) and thyroid. BPA is a synthetic estrogen that interferes with thyroid function

    Stop eating all gluten, all artificial sweeteners and soy.

    Make sure your vitamin D is between 60-100

    Check your blood tests and make sure your free T3 is in the top 25 percentile of the reference range and have your private doc check you for adrenal fatigue

    That's all I've got. Let me know if it helps...I'm trying to get myself straightened out. I have been struggling for years here in the US. it isn't easy. Good luck!!

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    • Posted

      Thanyou so much for your reply, they do not check T3 in the uk only T4 / TSH levels. I am due a blood test in 4 weeks i will request free t3. Do you know what is the best type of diet for hypothyroidism?
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  • Posted

    It takes a long time to recover from synthetic T4 only (that is my experience) and someone else told me I should get my adrenal fatigue under control BEFORE going on bioidentical. I don't know how much of a problem that can cause. My hypo symptoms had become so severe I lost taste and smell completely, could not sleep at all without meds, my muscles in my feet and calves cramped so much I had to wear a brace at night so I could walk during the day. Those are not all my symptoms. Just a few. All those symptoms resolved when I went on bioidentical.
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  • Posted

    Hi lyndab,  I sympathise with what you are going through.  Sometimes symptoms, blood test results and medications can seem like a complicated muddle to us.  We don't know which of these might need to be observed more closely or tweaked to bring us some relief.

    Some of your problems seem to have a parallel with some that I have had to deal with so I can at least tell you about my experience to see if it helps you.

    you say you were stable for 20 years but for the past 5 months things appear to be unstable with your thyroid.  Has your thyroid really started to become erratic or has it become erratic because some doctor looked at your TSH results and decided to fiddle with your thyroid medication?  Let me tell you why I say this .. you had a gynea operation 5 years ago - this brings about bodily changes and 'can' alter your TSH.  TSH is unreliable especially after certain surgeries! .. so forget that reading and concentrate on the T4 and T3!  Your T4 is low and that is definately a problem.

    A few years ago I had a hemicolectomy (right side of colon removed) after this operation my TSH dropped to 0.08 - an inept doctor who did not understand thyroid conditions insisted on dropping my thyroid medication (100mcg Oroxine) to 75mcg Oroxine even though my T4 and T3 were very good as was my blood pressure, heart rate etc. I was quite well.  Within 6 months I became hypothyroid and very ill.  I put it back to the original dose myself and refuse to let anyone change it again.  Now comes the important piece of information .. which your doctor probably does not even understand.  You need 1.6mcg of thyroxine for every kilo of your bodyweight.  If you calculate that you will at least know what amount you should be on.  After being on that amount for several months you can then decide if it might need tweaking up or down just a little.  I weigh 60 kilo .. 1.6 x 60 = 96 so I am taking 100mcg as that is the closest dose.

    Also, I have been taking HRT for 11 years (Premia 2.5 continuous) it's synthetic and I love it.  Without it I am very unwell.  At one time I tried the bio identical hormones but after a while they stopped working so as they were quite expensive I just went back to my lovely synthetic hormones.

    So, in finishing, in my opinion your thyroid medication needs to be adjusted correctly to bring that T4 level up.  Always get copies of your thyroid tests and make sure they test for T4 and T3.  Research thyroid conditions thoroughly to improve your knowledge and don't rely totally on doctors opinions.

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    • Posted

      Thanks for your reply, i am new on here and its so good to

      chat to you lovely people and get help. I am due a blood test i will request free t3, they don't routinely check that. Can you recommend any books or diet for hypothyroid?

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  • Posted

    Hi lyndab,  You need to thoroughly research thyroid conditions on-line.  There is loads of information out there and forums and facebook pages you can follow.  It's important to learn as much as you can as it seems that doctors know very little about thyroid management.  You can save yourself from years of ill health if you can understand your condition and have a major say in how it it managed.  I do not have any advice on diet.  There are certain things that should not be included in your diet and you can research these.  Blood tests should include FT4 and FT3 although they don't seem to test for the FT3 unless you push for it. "Always' get copies so you can monitor your results yourself over time.   'Don't allow a doctor to change your medication based on TSH alone'.  This can be a disaster for you and bring you a lot of misery.  You must stand up for yourself when it comes to your thyroid treatment and in order to do this you must research.
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