Treating with NDT without GP support

[Tabbymaple]

Hi

I have been diagnosed with hypothyroid for 10 years after a long battle with all the usual symptoms, exhausting tiredness, brain fog, low grade headache for months at a time, while my T4 appeared to be stable and TSH low, I finally stopped taking Levothyroxine and started taking NDT after reading Dr Peatfields Book and researching as much as I could about adrenal exhaustion etc. I take 4.75 grains daily and I have felt fine and stable for around 5 years now.

Over the last 3 years my daughter now 18 has been getting more and more lethargic, tired, unable to concentrate etc. She was diagnosed with glandular fever in 2016 and we thought it was the lasting effects of that, but she has not improved and is now at the final stages of her A levels. The GP finally agreed to test her T4 and TSH in November '19. Her T4 was 15 & TSH 4.5 no other tests were carried out. We went back for another test early January and her T4 was 16 and TSH 4.9. She had begun taking Vitamin D as we live in the UK and that has helped a little with the tiredness, but she is still not feeling healthy by any means, she has put on around 2 stone in weight over the last 6 months and cannot think clearly. She is failing her A levels, her grades have dropped from B's to D's and she is coming up to her final exams this spring. It is heartbreaking to see her struggling so much. The GP appointment in January was with a shockingly rude and arrogant locum, he told us that her TSH needs to be above 10 before they would consider treatment, pointing out that this is standard practice now. I feel sure she would not be functioning at all at that point. He said he would refer her to an endo, which he did, but the appointment is not until April.

I was a nurse some years ago and so given the GP's refusal to consider starting treatment, I started taking her pulse, BP and temp daily to get a baseline reading. Her temp was consistently around 36.3 pulse around 80 though. After around a week she began to take 1/2 grain of NDT (Thiroyd) daily. It really seems to have made a difference, she laughs more, has been able to concentrate better and seems more awake than I have seen her i some time. Her temp this morning has come up to 36.7 pulse 82 and she can actually get up in the morning and she is physically active again.

However, I am concerned about what we are doing, we do not have the support of her GP for this or any other treatment. Please can someone help us to work out a longer term plan. How do we 'handle' the medical profession? blood test results? do we attend the endocrinology appointment in April? I am doing the right thing in encouraging her to treat herself or am I being reckless.

[nightingale-56]

Hi Tabbymaple I would say that you are doing all the right things, especially as you are following Dr Peatfield's book. A year ago, after 20 years on Levothyroxine with the last three of them adding in a bit of T3, I changed to NDT and can honestly say that I have improved. Not only my thyroid blood levels, but all other bloods seem to have improved as well. If you can afford it, I would see a private Endocrinologist who specialises in Thyroid and also believes in NDT. Medichecks or Blue Horizon are good for getting private Blood Tests.

Once I knew my blood results were good, I came clean to my GP and Endo. The NHS Endo said he was happy to keep on monitoring me. I am now taking 1 1/2 grains of NDT.

[Peanut31]

Hi

As a parent myself and a sufferer of Hashimotos and underactive thyroid, you are 100% doing the right thing for your daughter and I wouldn’t hesitate to step in if I needed to help my child.

I now self medicate on NDT with some Levothyroxine, after an unsuccessful journey with Levothyroxine alone.

My GP doesn’t know I self medicate with NDT.

I saw a private endo who came highly recommended and I was left to get worse, then my GP stepped in, but, as said I never felt good on Levothyroxine despite my bloods looking good (confirmed on here).

If your daughter is getting better then continue and remember we can support you on here.

I owe a lot to this forum for all the help they have given me. Listen to the advice given on here.

You don’t need your GP’s permission, it’s a person you see for 10 minutes if that and has no idea of the struggles your daughter faces they follow out of date NHS guidelines, and Levothyroxine doesn’t suit us all.

There are a few options, cancel the appointment with the endo and say she’s feeling better and just brush it off so to speak, or go and see what the endo say.

They may agree to start her on Levothyroxine.

I add Levothyroxine to my NDT and still get this from my GP, I have to have blood tests for a continuing prescription, but ,when I get the results I tellmy GP, that you can’t really look at blood tests, it how I feel, and with Hashimotos I could be having a attack.

I reassure him I feel fine and go on my way.

They are aware I am members of thyroid forums and I have knowledge of the thyroid condition and I have made major changes to my lifestyle which he said is refreshing to see.

I’ve wasted too many years of my life feeling absolutely dreadful and not knowing why, don’t let this happen to your daughter.

Best wishes and good luck.

Peanut31

[Hidden]

It is my opinion that it is always essential to tell all the relevant facts to any doctor you see. If any of them were to discover you are telling porkies, they would have a legitimate reason to expel you. Once they have been told of the true reasons for you taking alternative medications, which is, after all, the unavoidable consequence of their rotten treatment or absence of any treatment at all, they would not dare risk the actions of the GMC against them.

Suggest you tell your story to your local CCG with convincing reasons for the actions taken, blaming them for the local blacklisting of NDT and requesting the true reasons why they are prepared to believe and obey recommendations that must be obviously utterly ridiculous to any properly trained doctor. Attack is always the best form of defence.

I admire what you are doing and wish far more sufferers from the miseries caused by thyroid issues would take more action towards getting the current situation improved by whatever means they can. Complaining loudly and bitterly could, one day, get us all some form of justice.

Why so many continue to have full trust in their doctor when they are ignorant of the problems they are causing, baffles me. I changed my attitude when a GP told me that NDT was "unlicensed" (So what!), she had a lot of patients waiting and I should "go home and sort myself out". I did precisely what she said, bought some NDT, got well within a few days and will NEVER EVER take levothyroxine again nor trust a single word any doctor says to me.

[Angel_of_the_North]

GP wouldn't understand what bloods should look like on NDT anyway - if he even knows what NDT is. You are as capable of monitoring as GP is. You might want to try to find a sympathetic private endo though

[Framboise]

Glandular Fever is known cause of some thyroid problems, including mine! If you are in the south east and want to take you daughter to a private endocrinologist, who I know would help her, please let me know and I'll PM you his details. He's also NHS so holds a bit more sway with GPs than the private ones who aren't also NHS.