Trying to try T3

[imagisal]

Hello, I am new to this forum and would be truly grateful for any info or adivice anyone can offer. Sorry it is a long post!!

I have been diagnosed hypothyroid for 20 years and treated with Levothyroxine only, during that time my TSH was always kept at the higher end of the range (4.5 - 5) any attempt to have increased T4 to get TSH to mid or low range was dismissed by my GP and I was never given any other information about other tests for thyroid function. During the those years I have had a number of health challenges, which in hindsight are most probably related to being hypothyroid.

Over the past few years and with the availability of info online I lost all confidence and belief that I was getting good treatment. I decided to advocate for myself, I have recently changed GP practice so i ordered a copy of all previous thryroid tests and took that along to my new Doctor., he actually said he felt very sad and apologised for my having been 'undermedicated for decades' , he said 'your whole body, every cell will have been starving for thyroid hormone'. This was an unexpected response as I was ready to be fobbed off ...again. However he still wants to treat with T4 only ( I mentioned wanting to try T3 or NDH) and increased the dose to 125 and 150 on alternate days. My tests (after 8 weeks) have now come back as TSH 0.13 and FT4 20 (increased from 4.5) I dont have the actual print out yet to give reference ranges. The reason I want to try T3 is I have fibromyalgia type symtoms and dreadful headaches and these have worsened on the higher T4 dose although my energy has improved slightly. I have read that these symptoms can be alleviated with T3 or NDH

Can anyone tell me what my rights are as to being precribed T3 on the NHS in the UK? , my doctor was hesitant when I asked about wether he was able to prescribe it and I got the impression he would be questioned by his colleagues and the practice managers if he wanted to prescribe or even spend money on the FT3 test ie it's all down to the financial implications. I am seeing him again tomorrow.

I also have a consultation booked with Dr Peatfield at the end of the month but I undertand that he cannot prescribe but uses supplement alternatives, has anyone been treated by Dr Peatfield?

Thank you in advance for any info and for all the posts here that provide such a wealth of knowledge and experience of thyroid related issues. S

[humanbean]

You could try something a little less controversial first... Although I totally get your frustration at being stonewalled with regard to T3 - just put it on the back burner for a little while.

One of the consequences of being low in thyroid hormone is that the gut doesn't work well. Stomach acid reduces and food is not adequately broken down. Being low in minerals and vitamins is the usual end result. Gastritis, acid reflux and gut problems are also a common end result.

Ask your doctor for blood tests for iron, ferritin, vitamin B12, vitamin D and folate. Get a copy of the results, including reference ranges, and post them here for comment and suggestions for good supplements.

Being low in range is NOT the same as being normal. There are optimal levels that we have to reach to have any chance of feeling well. Once you have fixed any deficiencies you should feel a lot better.

If you still have problems, then is the time to start arguing for T3. Be aware it can be bought online, and imported into the UK for your own use, legally, and it doesn't cost that much. I haven't bought any for ages though, so can't help you with that. You can go to some European countries and buy T3 over the counter without a prescription for a couple of euros for 30. The NHS, on the other hand, uses its vast bulk-buying power to drive prices UP.

According to this page :

evidence.nhs.uk/formulary/b...

the NHS pays £102.30 for 28 pills. So your doctor is not going to be falling over himself to prescribe it. The cost has also meant that some CCGs have now banned their doctors from prescribing it at all.

[humanbean in reply to humanbean]

I should also point out, from my own experience...

Vitamin D supplements virtually eliminated my muscle pain/fibromyalgia type symptoms. This experience is fairly common. And I wasn't even terribly deficient to start with, I was just low in range.

I've had headaches for years. Increasing my iron/ferritin levels reduced them considerably.

[imagisal in reply to humanbean]

Thank you so much for your response. I had a feeling it might all come down to cost!

I understand that years of being hypo are not going to be cured in a few months but at the moment the muscular problems and joint stiffness are affecting my ability to function and to work and I am self employed they are getting worse, it's very scary.

I have been researching the gut issues you mention, thank you for the reminder to not just focus on the thyroid hormone meds but address other possible deficiencies and for the request for more tests. I will post any that I can get done.

Thanks again

[Hillwoman]

I've been seeing Dr P for some years and had a checkup only last week. He's a lovely man - very easy to talk to and he actually assumes intelligence on the part of the patient! He's also hugely experienced. If his own treatment protocol doesn't get you up and running, I find he's very open to discussing other ways and means.

My own lack of success thus far on a T3 regime is, quite frankly, down to my own self-neglect and failure to get back to him with progress reports for further discussion. That's partly a consequence of being too ill much of the time to think straight, and having too many other health problems which are also poorly treated by orthodox medics. I'm applying myself a bit more at the moment and hoping I can make it stick!

Best of luck.

[imagisal in reply to Hillwoman]

Thank you Hillwoman, it is reassuring to hear from a current patient of Dr Peatfield.

There is so much information around thyroid health and treatment I find it quite overwhelming so I am really looking forward to seeing a specialist in this area to get a thorough assessment.

Best wishes to you for improvements in your health...I hope you make it stick!!! Thank you again for your reply.

[Hidden]

Hallo there, I was diagnosed with Hashimotos in 1978 aged 27 and was put onto T4 tablets. Initially I felt a lot better but after a while I found myself putting on weight aching, having gynaecology problems, etc. etc. etc. Any doctor I went to appeared to be either deaf, totally uninterested, didn't have a clue about thyroid treatment, or treat my like a complete hypochondriac. In 2009 - having had my problem for 31 years and feeling that I would be better off dead - via Thyroid UK I discovered Dr Peatfield - I read his book "Your Thyroid" and went to see him. He is just totally lovely, very easy to talk to and listens to you. He cannot prescribe treatment for you as the GMC (in their infinite wisdom) tried to strike him off, but he will tell you all about alternative supplements and well there are ways around obtaining the right treatment. I came back from that first appointment, sat on the bottom rung of the stairs and cried and cried for ages - somebody at last had listened to my plea for help. Go on - see the lovely man - he knows all about under active thyroids as he has the problem himself. You won't regret it. Regards

[imagisal in reply to Hidden]

Thank you so much for sharing your story & experience. I am heartened to know after such a terrible time on T4 you have found better treatment through Dr P. I feel more confident in my choice to seek alternative treatment protocol through Dr P. Best wishes.