Switch from NDT to Levo, yes or no?

[Jobiska]

I've been taking Thiroyd for about ten years, but my last bottle will run out in a couple of months, so I have to decide; try Thyroid S instead, or try Levothyroxine. When I was initially diagnosed as hypothyroid, I only took Levo for a few weeks, before changing to Thiroyd, based on all my reading around the subject, as I thought that it sounded like the more promising option. So I don't know if Levo will work for me, or not.

I'm unemployed, so the raised price of NDT is also a consideration.

I know many here will have faced the same dilemma. What did you choose, and how is it working out?

[KatielovesNZ]

Hi Jobiska,

Just wondering if your GP would prescribe your meds on the NHS as you've been taking them a long time?

Someone I know was buying NDT I think, but her GP prescribed these as they are available on the NHS.

Levothyroxine worked really well for me 10 years ago, but not feeling so good the past 4 years.

I'm hoping to have a trial of ndt for 3 months at least on the NHS. If I can't have them prescribed, would you mind sending me a private message as to where I can buy any?

Happy Easter & Best wishes

Katie

[Jobiska in reply to KatielovesNZ]

Thanks Katie. I guess it's worth a try! What brand do they prescribe on the NHS? I'll send you a PM with the supplier from whom I used to get Thiroyd, but that brand is no longer produced. They still sell Thyroid S.

[radd]

Jobiska,

If you decide to go down the Levothyroxine route again I would obtain a GP’s prescription before you run out of NDT to ensure you aren't left with nothing.

After medicating NDT for several years, a few other members and myself have had our request for Levothyroxine to be reinstated denied. Possible contributory causes maybe new/green GP’s who haven't checked our previous history but these discrepancies can sometimes takes many weeks to iron out.

Because my labs had shown me to have optimal thyroid hormones (because I was self- medicating NDT) he was incredulous and thought I was initially lying about both having hypothyroidism and then about self-medicating.

I only had my Levo reinstated by a chance locum after I pointed out a scan of my salivary glands evidenced a totally atrophied thyroid gland, and I had previously been prescribed 125mcg Levo for four years before having T3 meds withdrawn twice and forced to self-medicate .

GP's are incredibly naive about patients forced into self-medication. Meanwhile I have told the truth, the whole truth, and nothing but the truth (so help me god or who ever wants to 😁) . After all why would anybody want to pretend they have hypothyroidism! ? ! !!! 😳🤷‍♀️🙄. ... Grrrr

[Margo in reply to radd]

"Naive doctors", that's being very polite Radd!😀

[radd in reply to Margo]

Oh dear Margo, with the very small odd exception I have plentiful other names for them, some far too rude for print in our forum 🤣

[Margo in reply to radd]

Ha ha, my thinking too Radd! Happy Easter x

[Jobiska in reply to radd]

Thanks Radd. They have agreed to prescribe Levo, though the doctor I saw a while ago insisted on starting me at 25mg. I picked up some some boxes of that, but haven't used them. Another GP at the practice agreed with me that this was rather low and agreed to start me at 50 or 75mg, I forget now. (I'm currently on 1.5 grains of Thiroyd). I have an appointment soon so will discuss that again, and explore the possibility of them prescribing NDT.

[radd in reply to Jobiska]

Jobiska,

25mcg! Does he want to kill you 😳. Glad to hear you are stockpiling 🤣.

I see from your comments below you know the score regarding NDT and you have to be immensely lucky to have it prescribed. Very very few are and then have the constant worry of it being suddenly withdrawn should another medic take over their care.

I myself had T3 withdrawn twice by two separate CCG's with no explanation or warning. I have since felt so let down and distrustful I prefer to buy my own meds although accept Levo from my GP for the moment until they moan about a low TSH and then I'll be off buying both NDT & Levo again.

You will need about 100mcg - 125mcg Levo then, but it can be tricky to tolerate if you have conversion issues, so why not take a bit of both which helps keeps the cost down. If GP moans about TSH just buy some Levo as its hugely cheaper than NDT. Many people even with conversion issues only require a tiny bit of T3 to get everything working right so you could possibly dose 1/2 grain + whatever else made up with Levo.

[Jobiska in reply to radd]

Good idea! I hadn't thought of mix n' match, but that could be a way forward. The increased price of NDT is certainly an issue now, as I've been unemployed since the beginning of the pandemic...

[Jobiska in reply to Jobiska]

That was a good thing about Thiroyd, when it was available, and cheap: I felt totally in control of my medication regime. Life getting a bit more complicated now...

[radd in reply to Jobiska]

Mix n' match 🤣Pick n' mix 🤣

Dreadful really isn't it.

[shaws Administrator in reply to radd]

One of the GPs phoned to tell me:-

"your TSH is too low - your T3 is too high and your T4 too low!.

"Yes doctor that's because I take T3 only and T4 is low because I take none.

GP "but T3 converts to T4. "No doctor - it is the other way around".

The GP is in his late 60's so goodness knows how any patient in that surgery who has hypo must be an awful experience.

[Jobiska in reply to shaws]

Yikes!

[PixieElv]

NDT is not available on the NHS as it’s not a licensed medicine. Levothyroxine is readily given and in very rare cases Liothyronine (T3) too.You can get NDT via private prescription only (some Endos will do this ) in the UK or a lot of people on here self source via the Internet.

[Jobiska in reply to PixieElv]

Some GPs will prescribe NDT. It was 'grandfathered in' when the licensing system began, meaning that it didn't need a license because it was considered established and safe. Unfortunately that puts it into a limbo which is now misunderstood. Doctors have to prescribe it at their own personal risk, in insurance terms, which understandably makes them very reluctant to do so.

My husband gets T3 from the GP as he couldn't tolerate T4 in any form. I know he's lucky that our GP will prescribe it.

[PixieElv in reply to Jobiska]

So is this a private prescription from a GP or would the NHS pay? I’ve tried to Google this but it’s impossible to get a reliable source

[Jobiska in reply to PixieElv]

A few lucky people get their NHS doctor to prescribe NDT on the NHS. It really depends on what the local health service allows the doctors in the practice to do, and how flexibly your practice or individual GP interprets that.

[Brightness14]

I take NDT thyroid s from Thailand. I have been taking this for around six plus years and I have no thyroid, so it works for me. Although it has gone up in price over the past two yearsit's still very reasonably priced.

[Jobiska in reply to Brightness14]

I'll give Levo a try, on the grounds that I can get it for free, but Thyroid S is my next option if the Levo doesn't work; or a bit of both, as Radd suggests. Glad to hear it works for you.