NDT cost claim

Hi there,

So I'm diagnosed with hypo and my gp and NHS endo refused to treat me with NDT, even tho I feel pretty cr*p on levothyroxine. I started to self medicate and it brought me back to life, but recently I'm under care of private endo who gives me prescriptions for NDT. She suspect I might be allergic to levo and said I shouldn't take it anyway. Is there any chance I would get back money I spend privately? I have medical exemption card but it only, of course, cover NHS prescriptions. So what when I'm allergic to levo, how would NHS treat me?

11 Replies

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  • What was your symptoms I've been on levothyroxine for over 10 years and have had hair falling out badly and fatigue

  • Oh dear, I was pretty much dead, was falling asleep anytime everywhere, getting up in the morning was horrible. Lost good half of my hair, dry very itchy skin, I've put 30 kgs in 2 years out of nowhere, periods stopped. I was always very cold, moody, sex drive disappeared. Brain fog was terrible. These are the main ones.

  • Sounds like me other then wanting to fall asleep only because I drink coffee probably to get some sort of energy has your hair stop falling out since you been on NDT my endo won't give me no t3 or armour I've been looking for a new doctor can't seem to find one

  • Yeah, and I'm growing new hair. All my symptoms vanished, it's like being reborn!

  • Ziel,

    You would possibly be offered Liothyronine (T3) if a NHS endocrinologist said you were allergic to Levothyroxine. Heaven only knows how one persuades most endos that you are allergic to Levothyroxine. My endo would only shake his head and say "Levothyroxine can't do that!" NDT isn't licensed for UK use so it is unlikely it would be prescribed. You won't be reimbursed for money you have spent on NDT or T3 privately.

  • The thing is that I obtained NDT via NHS, but only once. Didn't pay for it. Then they said they won't continue even tho my blood test and how I felt was 180 degree turn out. I just think they don't really want to treat us.

    Private endo thinks it's the rash and itchyness I get every time I'm on levo means I'm allergic.

  • Ziel,

    I'm surprised you got NDT on the NHS in the first place. The BTA say "Levothyroxine is the preferred therapy" but do acknowledge that some patients may be allergic to it and that Liothyronine may be necessary. They don't support NDT because it isn't licensed in the UK.

    I can only suggest your private endo writes a letter to your GP stating you have an allergy to Levothyroxine and your GP may then refer you to an NHS endo for further investigation and perhaps prescription of Liothyronine. Because NDT is unlicensed a doctor can't be forced to prescribe it although s/he may agree to do so on a named patient basis.

  • It was from hospital consultant, but they had problem with obtaining the meds, so they gave me green prescription and I ordered from one of the online pharmacies.

  • i agree that many many people are allergic to levo or unable to regain their health on it

    did you try several makes as all have different fillers and acacia powder in some is a major ? in my book

    I would seek a referral to a good allergist and take your fight for NDT on NHS from there bcos i agree its a disgrace that NDT is not licensed in the UK but thats because the costs of obtaining a licence are horrendous yet levothyroxine was grandfathered in on a heap of erroneous and unproven assumptions

  • I might actually do this. It's so much cheaper to order it from abroad, but the waiting times are long and you never know if they will stop it on the boarder. I will pay anyway, would never go back to levo, just wondering if anyone claimed it yet.

  • So try Thyroid-s instead

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