NDT any tips?

[Kimmi01]

Hello, this is a question to those on or who have triedNDT. Have you managed to get this dr prescribed or do you buy it privately? I’m struggling so much, and getting my dr’s to understand, and fighting for each increase, is beyond exhausting. As my results seem to point to an issue converting t4 to t3, as well as being woefully undertreated (but my levels are fine according to the nhs!), i was wondering if NDT might be the best route for me. Any tips would be greatly appreciated.

[SlowDragon Administrator]

Roughly when in U.K. are you

You would have to get NDT privately

Levo plus T3 is cheaper

Have you increased dose Levo from 50mcg to 75mcg daily yet

If not strongly recommend you do that

These results show you were very under medicated

healthunlocked.com/thyroidu...

suggest you retest thyroid levels

And then request next increase in Levo as per guidelines

Take a supportive member of the family or friend with you as witness

[Kimmi01 in reply to SlowDragon]

Hello, yes, after recovering from my meltdown over my consultants apt I have increased every other day, so 1 day 50 levo the next 75 and so on. The nhs will have me test in 3 months (I’ve been on the higher dose about 3 weeks now. So I will get a medicheck test at the same time. I’m in mid-kent. I definitely will take my partner with me next time. You live and learn 😬

[pennyannie]

Hello Kimmi -

I very much doubt you will get NDT prescribed on the NHS as a new patient.

If you can afford to go privately all treatment options are readily available - Thyroid uk - the charity that supports this forum hold a list of patient to patient recommended thyroid specialists - NHS and Private - maybe email admin @ thyroiduk.org for the list, many consultants still offer zoom consults - so distance need not be an issue.

I'm with Graves post RAI thyroid ablation and refused both NDT and T3 through the NHS in 2018 and I now self medicate NDT and do not go to the doctor and run my own yearly full thyroid blood tests, to include the vitamins and minerals and look after myself.

I couldn't afford to go privately and with the help of this forum learnt where to get the appropriate blood tests run and with much research into my own issues and Graves Disease I worked on building back up my ferritin, folate, B12 and vitamin D and after the NHS refused to help me further I felt I had no option but to Do It For Myself and I take Natural Desiccated Thyroid,

[Kimmi01 in reply to pennyannie]

Wow thanks for that, it sounds like a really positive outcome for you. Thanks, that gives me some hope.

[Ilovegreenolives]

Hi, There is a company called Forefront Health (US based) that sells thyroid suppliment products...One of them is an OTC supplement . I have tried it and it does seem to help.

[Kimmi01 in reply to Ilovegreenolives]

Thank you. I’ll look into that. Very helpful.

[DJR1 in reply to Kimmi01]

Importing from the US is not sustainable with the increased postage charges, VAT etc My latest import charge was £70 on top of the cost of 1.25 of Armour Thyroid. I have just started with Roseway Labs for prescription and supply and it’s considerably cheaper. The understanding around dosing and the need for NDT was spot on. An initial consultation with the clinical pharmacist was £55 and it was a very good discussion and I am sure this would be useful for you. I live in Kent also and I have explored all routes to obtain Armour on the NHS and failed. Any ICB who do fund presently are having a 50% cut in budgets so there is no possibility of new Armour Thyroid prescriptions. It might be that the Clinical Pharmacist thinks that Levothyroxine plus added T3 is the best option. It would be worth a discussion.

[serenfach]

Most GPs dont know about NDT. Well, they hardly know about T3! My Endo told me NDT was a "hippy drug" to which I replied that that was alright as I had been a hippy.

I doubt very much that you will find a GP or NHS Endo that will prescribe NDT, but if you do, let us know and we will all move there! Good luck.

[Kimmi01 in reply to serenfach]

lol well I’m thinking is becoming a hippie 😂, actually I do have the van 😂.

[Kerry124]

Hi Kimmi

I have taken NDT in the past and it is expensive to buy so if you can take Levothyroxine please try it first. It’s not an instant fix I am afraid and slow and steady is the route you need to take. However if your GP is not increasing your medication and you feel you want to try NDT I am sure there are some members who will help and advise you if you ask.

[Farrugia]

I echo what Kerry124 says - try to get as well as you can on Levothyroxine, get to the optimum dose for you and see how you feel, it does take time for it to work. It’s also important to have optimal levels of vitamins and ferritin etc - there are lots of informative posts on here. It’s important to do this because even if you did switch to NDT you still need good levels of all of those other things.

I now take NDT but it is expensive and it doesn’t miraculously solve everything, I still have to supplement with various things and am careful with my diet. There is no easy fix unfortunately and it’s definitely worth trying really hard to make Levothyroxine work for you because it’s much cheaper.

[serenfach]

I take 3 NDT a day and have worked it out that it costs me 99p a day. I am on a low pension but will gladly save up for the NDT - a quid a day to feel almost human!

[Kimmi01 in reply to serenfach]

Thanks Serenfach, almost human sounds wonderful.