Private Prescriptions for NDT

Hello everyone,

I was wondering if any of you had success in obtaining a private prescription for NDT form an endo or GP? I am the end of my tether with symptoms since starting to take Ompeprazole for GERD and my GP will not up my Levo as I keep getting heart palpitations and tells me that they wont prescribe T3/Combination or NDT as the NHS does not support this. Brain fog is getting such a massive issue that some days I can't leave the house, I can't go on like this any longer so I was wondering if anyone has more success in getting treatment from a private practitioner and if you had any recommendations of who to see in the North of England.

Thank you.

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34 Replies

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  • Welcome to the forum, Alimacb.

    Can you post your recent thyroid results and ranges and members will advise whether you are optimally medicated on your current Levothyroxine dose. Palpitations can be caused by under and over medication.

    Email louise.roberts@thyroiduk.org.uk for list of private endos and private GPs who may prescribe NDT. You should check with their offices before confirming a booking to see whether they still prescribe NDT.

  • Have you had vitamin D, folate, B12 & ferritin levels checked? If not ask GP to do so. Make sure you get actual figures and also the ranges (figures in brackets) Then come back here for advice

    Ompeprazole is a PPI. These can strip out nutrients, especially B12 & magnesium. Being hypo these are often very low to start with, so PPI can easily make it worse. So essential to get vitamins tested

    nhs.uk/Conditions/Anaemia-v...

    gov.uk/drug-safety-update/p...

    High stomach acid in hypo's is often actually low stomach acid. Same symptoms, different treatment - lots of posts on here about that.

    Do you have Hashimoto's- high thyroid antibodies? If not been tested ask GP to do so

    Are you on adequate Levothyroxine? Post your thyroid results and members can advise

    All thyroid tests should be done as early in day as possible, fasting but drink plenty water, and do NOT take Levo in 24 hours before, delay until straight after.

    Assume you know Levo should always be taken on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but can be more effective taken at bedtime. Must be no food or drink at least 2 hours beforehand

  • Thanks for your replies, I'm having blood tests next week so will update with new results when they come through, GP has agreed to test ferritin and cortisol but nothing else yet. When I brought up the issue of brain fog she gave me a memory/dementia test!

    Yes I have hashi's but they will only test for the presence of antibodies and won't give a count, I take a high vitamin D supplement but nothing for B12 so I'll look into that. The doc told me that I must never come off Opeprazole because of damage caused by reflux so I'm scared to try anything else, how would I know if it was low rather than high acid? Is there a l test I can ask for?

    Oh, last blood tests in Feb:

    TSH - 0.62

    T4 - 20.6

    Maybe I'm not converting?

  • Oh and I didn't stop my meds before my last blood test so hopefully next weeks will be more accurate

  • Alimacb,

    When you post your new blood test results please include the lab ref ranges (the figures in brackets after the result).

    To determine whether or not you are converting well you would need to see a FT3 result which your GP is unlikely to order. You can order private thyroid tests via thyroiduk.org.uk/tuk/testin...

  • Look up low stomach acid test on here or google

    Might be an idea just to put a new post up asking about stomach acid. You'll get lots of replies.

    Yes you can't just stop any PPI

  • Thanks

  • But privately then you don't need a prescription 😀

    I can pm you a link to where I get mine if you're interested?

  • Yes please

  • I'd guess you're not converting but without bloods it's hard to tell.

    If the GP is not playing ball look at

    Bluehorizonmedicals.co.uk

    Thyroid plus 11,12&15 are all good comprehensive tests.

    You'll have your results plus a Drs report in about a week. Not cheap but sooo worth it if you can afford.

    Are you gluten/casein free?

  • It's so frustrating, I've been on Levo for about 10 years and only just finding out all this new information. Yes I will have a look at private blood tests, then at least the GP might take more notice. Just recently started gluten free. Thank you.

  • I was in the same boat, years on Levo just becoming more unwell.

    There's hope now you're here! Will pm you now.

  • Thank you

  • why do you not simply order NDT and self treat all my lot do it

  • I want to make sure I'm getting the correct dose as I also have heart issues. I would really prefer to have the backing of an Endo/doctor if needed

  • Where do you order this from please?

  • Eureka74,

    Either PM Reallyfedup123 direct to ask where her family obtain NDT or write a post asking members to send you private messages where to source NDT.

    To send Reallyfedup123 a private message: support.healthunlocked.com/...

  • Thank you.

  • Hi RFU123 Where do you get your NDT?

  • EveP,

    Please send RFU a private message as she can't reply on the forum.

    To send a private message: support.healthunlocked.com/...

  • Hi I take 150 mg of Levo. Last year I was prescribed Omeprazole as I was taking high doses of ibuprofen for fibromyalgia. I hadn't any acidity problems at all. I developed GERD as a result. It got worse and worse, I was advised to increase my dose. I tried other types of PPI with no improvement. I had a throat endoscopy because of the pain. I then had stomach upset and was unable to keep the PPI down. My acidity problem disappeared. The PPI was causing the symptoms.

    I found that Zantac worked better ( it's a antihistamine and therefore works in a different way) and also strong peppermint tea. After a few weeks I no longer had any reflux. I sure the PPI caused the problem and certainly made it worse. Doctors are told to prescribe it alongside ibuprofen without exception.

    I think you could try experimenting with Zantac, which you can also buy own brand versions very cheaply. Also the tea.

    Good luck with the NDT, I'm also considering trying to use it too. I had tests done at Blue Horizon and have learnt a great deal from them and from this community.

  • That sounds just like me! I was fine until I was put on NSAIDS for back pain and then I think that may have caused leaky gut also. GP wanted to double my PPI yesterday as she reckons I'm not on enough!! I'm going to try the baking soda test first and order some private lab work and then at least I'll have a starting point on paper to argue with. Gosh the lengths you've got to go to for correct treatment is shocking!!

  • Good luck. It's very difficult when you don't want to follow the doctor's intstructions. I think Omeprazole has many side effects too so be cautious with it.

    At least you have more information now.

  • I can PM you the name of a doc in North West who offered me a private prescription for NDT (which I refused). Most unusually she is a women's breast surgeon; I cannot explain, neither can my wife!

    I informed her of the existence of Thai NDT which she did not seem to now about and told me that she would be informing her other NDT patients about it so that their costs would reduce.

    Make of this what you will. I am neither a fool nor a millionaire, I take Thai NDT and regulate my own dosage according to how I feel. In the meanwhile I complain as loudly and as bitterly as I can in order that the treatment recommendations for thyroid problems should be brought into line with sanity. This is not easy when you are dealing with insane people whose opinions are backed up by medical qualifications and are therefore much preferred to those of mere plebs like me.

  • Yes please if you could pm her name, did you go to her as a private thyroid patient?

  • I see an endocrinologist at Arrowe Park Hospital on the Wirral (north west england) and he had no problem in writing me a private prescription for Armour NDT which I used for only 1 month and now I do actually buy my own from a website. The private prescription would cost approximately £100 per month (28 days) for the dose i have put myself on at the moment, however it was £40 for 1000 tablets of 1 grain Thai NDT which works out under £8 for the same dose over the same 28 day period. He did want to keep me on a low does too which because I am dosing myself means I don't have to listen to him. I am now having trouble getting him to write a prescription to trial T3 only or T3/T4 combination just to test if it is better for me. Anyway definitely buy your own, and test yourself through Blue Horizon if you feel the need, but go slow leave 6 weeks in between increases and listen to how you feel for increase and decreases. Good Luck

  • Thanks for the info, can you private message me where you buy it from? Do people get Thai NDT because they don't need a scrip to get it? How do you know it's the real deal?

  • There are several reasons people buy the Thai products:

    Less expensive;

    No need for a prescription (though other desiccated thyroid can often be obtained without prescription);

    After trying them, some people find they prefer one or other Thai product;

    Readily available in larger quantities - good if you want to build up a stock.

  • Are they made in Thailand or is it the USA stuff that's re-sold? Are they safe by UK standards?

  • Alimacb,

    Thyroid-S and Thiroyd are made in Thailand.

    They aren't listed in any national formulary as US, Canadian, Australian, NZ and European medicines are so they can't be said to conform to UK or international standards.

    Nevertheless patients have been self medicating with Thai NDT for years and report high levels of satisfaction.

    If you want NDT which conforms to international pharmacological standards you should consider Armour (the most expensive), NatureThroid, WP, NP or Erfa.

  • So far as we are aware, they are made in Thailand by Thai companies.

    There is a considerable number of people taking the products, some for at least several years. I do not recall a single "that made me ill" but that does not directly say that the are safe by UK standards!

    (There have been a few cases where people have questioned what they received. So far as I know, this has only happened when people have bought from less well-known suppliers. Hence it is strongly advised to take personal recommendations when choosing a supplier.)

    I do not take any form of desiccated thyroid so cannot answer from personal experience.

  • That's the problem, no one seems to have a recommended supplier except Facebook adverts and Amazon (which could be anyone) I've heard that Dr Peatfield is a good Dr to see so might be worth the travel to see him.

  • I suggest you post a brand new post, refer back to this post/thread, and specifically ask for what you want - a trusted supplier of whichever Thai product(s) you want to get. Please say, "responses by Private Message"!

    Look at the responses and make your mind up which one to use.

  • Alimacb,

    Posting guidelines don't allow for posting of sources on the forum where UK prescription only meds can be obtained.

    Write a new post and ask members to send you sources via private messages.

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