I'm new here but as a bit of background, I was diagnosed with hypothyroidism 8 years ago at age 16 and have never been fully right since.
I take a rather high dose of levothyroine of 200mg/day, especially considering I'm pretty small.
I am barely making it through the day without falling asleep and at weekends I 'nap' for 5 hours!
I'm giving up on my GP who just say my TSH is okay so they won't do anything and I've requested to be privately referred to an endocrinologist - can anyone recommend someone in the Northamptonshire area who is forward thinking and willing to look at T4 and T3 conversion rates and will actually do something about how awful I feel?
Thanks in advance!
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CharlotteEmma
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200 is too much for any one let alone one of your height.I strongly advise getting a second opinion/doctor to take a look at your dose/medical history, then adjusting it.I take 100 Monday to Friday and 150 on weekends.If I took 200 I would be bouncing off the ceilling!
Dosing is very individual anyway, but if Charlotte can't convert T4 into T3 she could take 500mcg & still not be actually getting the hormone she needs.
Hi and welcome to the forum. Unfortunately experience within the group shows that it is difficult to find a knowledgeable endocrinologist - NHS or private. A good place to start improving would be to request a copy of your latest blood results from your GPs receptionist and post them here with the ranges. They should look something like this TSH 5.1 (0.4-4.3). You are very unlikely to have had comprehensive testing through your GP and in that case private testing (incl using fingerprick at home) is available through Blue Horizons or Medichecks. For more info on basics, including procedures for testing, see our parent website thyroiduk.org . The tests you really need for a complete picture are TSH, FT4, FT3, vit D, vit B12, folate, ferritin, TpoAb and TgAb.
If you post any results you have or obtain then we will be able to give more specific advice. In your case it sounds possible that your body is unable to convert your levothyroxine (t4) into the active form t3, which is the one that drives all systems in the body. The test numbers would highlight that along with any deficiencies - typical with hypo which can cause issues on their own as well as hindering conversion and use of t3 in the body.
I'm in the same area as you but struggling with similar problems I changed gp surgery 3 times in the last 6 months! My current gp at least acknowledged my autoimmune thyroid problems but beyond that they seem too busy to be able to care... so I have given up again too!
I've read about Nuffield hospitals and wonder if that's worth a try but I don't have enough money right now.
If you find anyone you like please PM me as it is so hard to know where to turn isn't it.
Have you ever tried natural thyroid like NDT or one of the other types? I was on a low dose of levothyroxine but found I was getting unwanted side effects so I have just started metavive instead which is a natural desiccated thyroid. I'm taking a small amount of that and find I feel brighter. It contains all the Ts. Not just T4 like thyroxine. T3 I find is more energetic! Perhaps you need some of that?
I have seen various GP's and their answer every time is just to give me more levothyroxine - they won't look at more tests or different medication despite my symptoms never going away in 8 years.
If anything, since my dose was increased a few months ago, I have been even more tired and the one day I forgot to take my medication and wasn't home to take it later was the one day that I've actually not felt tired so don't know if this higher dosage is actually making it worse!
As some of you have said, I do think my dose is too high and I have been told that it is technically an overdose as I'm 5'2" and 62kg but the doctor still prescribed it and won't consider anything else.
I will look at having those tests done and then at least I will have some concrete evidence that might help to have someone listen to me!
Nobody can tell you that you are over medicated without seeing your thyroid results. Weight and size don't determine the dose required, thyroid blood levels do. You can order comprehensive thyroid tests and the vitamin and mineral tests Startagaingirl recommended via
Hiya I've been diagnosed hyperthyroidism. I live in Kettering waiting to see an endocrinologist for the first time . But I feel absolutely crap like I'm dying
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