Difficulties getting Natural Thyroid hormone prescribed

I have been hypothyroid since the age of 17 (now 32 years ago)! I have only ever been prescribed Levothyroxine and even though I am a health professional only became aware of Natural Thyroid Hormone a couple of years ago. I asked several GPs at my practice to prescribe it, but they all said they had never heard of it! A visit to the endocrinologist at my local hospital (my first visit in over 23 years) was a waste of time - he refused to prescribe it also!! A have since written to my GP practice asking them to consider prescribing it, along with some information, but have been refused again - local prescribing group said it could only be prescribed in exceptional circumstances!! In the past year I have also been diagnosed with Fibromyalgia and clinically I appear hypothyroid - extreme exhaustion, dry skin, hair loss, weight gain etc etc, yet because my bloods indicate that I am over replaced I have had to reduce my dose of Levothyoxine - I was taking 150mcgs daily, I now alternate between 150mcgs and 125mcgs. I so want to try an alternative to Levothyroxine - I want to feel human again and lose weight and my 'puffy' features typical of someone with myxoedema! What can I do?

5 Replies

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  • Personally I am ordering thyrogold from NZ and self monitoring symptoms and labs every 6 weeks. I know other people get a open private doctor and then get a PX and purchase the NDT. There are some brands you can get on <site deleted> I hear people mention - Thiroyd. I only have a tiny bit of experience with thyrogold so cannot say honestly if it will work for me yet. I am a health pro too and only just ID hypo after a lifetime and really bad last 6 years not able to work proper hours etc. GOOD LUCK WE ARE WITH YOU IN SPIRIT SUPPORTING XX

  • Frustratedmum Do you have your latest blood tests you can share with us? If you can post results for TSH, FT4 and FT3, plus TPO and TG antibody tests if done, along with reference ranges, members can make suggestions. If you don't already have your results, pop along to your surgery and ask for a print out, you are legally entitled to them under the Data Protection Act although some surgeries make a small charge for printing.

    If your results show you need something done about your meds, probably the easiest thing is to self-medicate with either NDT (easily purchased from recommended reliable sources without prescription) or maybe the addition of T3 to your Levo. Whatever the case, your results will be needed.

  • Oooh, I bet your bloods *don't* show that you're over replaced. Let me guess - your TSH is really low? That does not mean you are taking too much levothyroxine. All it means is that there is no signal going from the pituitary gland to your thyroid gland to produce more thyroxine. Doesn't mean that there *shouldn't* be a signal going from the pituitary gland to your thyroid gland.

    Doctors and their blood test-ological approach to treating patients, grrrr. If you look and feel hypothyroid you *will* be hypothyroid. Do you know what your FT3 and FT4 results are?

  • Have you looked at the ThyroidUK website? Full of useful info.

    Can you persuade one of your GPs to give you a private prescription? If it's a private prescription rather than NHS I can't see why the prescribing group should be interested as it's no charge to the NHS.

    I've just read the article posted on ThyroidUK a few days ago. You may find some helpful info there. It sheds new light on the blood tests.

    thyroiduk.org.uk/tuk/newspa...

    Make sure your vitamins and minerals are optimum.

    All the best.

  • Hi there

    I get ndt in private prescription from my GP but I had to get it signed off by a load of endos before hand as there's a lack of knowledge and understanding from the medical profession with regards to ndt.

    One of the NHS endos spent quite a while telling me it was snake oil, dirty and was produced in filthy conditions. I explained that Naturethroid (the brand I use) is made in the USA to their standards but to no avail.

    I'd suggest that if you want to stick with the NHS route you try for T3 to supplement your levo; if you have the di02 gene snp test (available on thyroid UK)and have it then there's a good bit of research that supports t3 supplementation.

    Otherwise self medicate with ndt; it changed my life massively for rhe better but I have the di02 snp so I fit with the study!

    Good luck

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