confused already, continued.

I forgot to ask, what is NDT?

and do brands really matter in UK. ?

[greygoose]

Natural Dessicated Thyroid. Made from pig thyroid, it contains both T4 and T3.

Different brands have different fillers and excipients. For some people that isn't a problem, but other people are sensitive to one or more of these fillers, so for them, the brand is very important. Especially Teva. A lot of people don't get on with the mannitol that replaces lactose in Teva.

[PixieElv in reply to greygoose]

Does Teva make NDT? I thought they only make Levo.

And there’s Efra and Armour NDT in the UK?

But your point about fillers remains

[greygoose in reply to PixieElv]

No Teva doesn't make NDT. They make levo and T3. You're mixing the answers to two different questions, there.

There isn't any NDT made in the UK. And it's very difficult to get it prescribed because it isn't licenced in the UK. Armour is from the US, and Erfa is Canadian, I believe.

[PixieElv in reply to greygoose]

got it 😊

[Hidden in reply to greygoose]

There doesn't seem to be a problem with levothyroxin in UK , as long as the GP or consultant prescribes it. You can't just buy it from a pharmacist even if he has known you for years. I had it on private prescription before the NHS, and right up to date with no problems.

[greygoose in reply to Hidden]

What do you mean by 'a problem'?

No, you can't just buy it from a pharmacy, it's a prescription only medication in the UK. But it isn't prescription only in every country. Which is why one can buy it on-line without a prescription.

[Hidden in reply to greygoose]

I meant that there is not a problem getting THYROXINE in the UK, as long as you are not trying to buy it. I know it is prescription only, I've been on it for a very long time, since 1942 actually. and I said so. It also made you payment exempt here, on the NHS. another bonus. Buying online is very stupid and dangerous, From what I've read here, there could be all sorts of disastrous results because people misunderstand what they are doing, or do what someone else unqualified suggests. And you have no quality guarantees. It is in our best interests that people can't buy certain medicines.

[greygoose in reply to Hidden]

My dear lady, if I were unable to buy my T3 on-line I would probably be dead by now. It is not stupid, it's life-saving. And it's not dangerous if you know what you're doing.

I cannot tolerate levo, I need T3 only and I need a high dose. That scares doctors and they don't want to prescribe it. If you are doing well on levo then you're one of the lucky ones, so don't condemn those of us who aren't so lucky.

It may be in our best interests that people can't buy certain medicines, but thyroid hormones are not one of them. In some countries they are OTC. And they are among the safest medications because they are not drugs.

You asked questions, I answered them to the best of my ability. I am not suggesting you self-treat, I'm not suggesting you do anything, so why the aggressive attitude? I don't understand.

[DippyDame]

You may find this, and other articles on the website, helpful

thyroiduk.org/if-you-are-hy...

[SlowDragon Administrator]

Which brand of levothyroxine do you normally take

Many people find different brands are not interchangeable

Government has issued guidelines after years of medics and pharmacies gaslighting thyroid patients

If you find some brands levothyroxine don’t suit you then GP can and should specify brand you need on your prescription

Or if (for example) you can’t tolerate Teva brand….a note saying “No Teva “ on all future prescriptions

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

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

[Hidden in reply to SlowDragon]

Thank you, but I have never had any problems with any brands of Thyroxine in my life. 81 so far. Loads of permanent problems like poor balance - coordination - constipation- thin falling hair - flaky skin- yellow face, early arthritis, etc etc.. Mum was told I'd be a cretin , but I'm not. And I didn't die in childbirth, as she was warned. But no brand problems, thank you. just 200mcg a day . plus a small dose for epilepsy, co-codamol for polyarthritis, and Mobic for the arthritis inflammation. My very best therapy is acupuncture. He knows an awful lot about thyroid problems , and does treats them, but he does his greatest work on my arthritis. and me, keeping me afloat. Who cares where the needles go, they don't hurt.

Please, what do you mean by gas lighting? I am familiar with the Edwardian drama , but not sure how it relates here. still always learning.

Thank you slow dragon, I do love dragons. so intelligent.

[SlowDragon Administrator in reply to Hidden]

Gas lighting …means (in this case) medics and pharmacies denying that lots of patients can’t tolerate different brands of levothyroxine (especially Teva)

[Hidden in reply to SlowDragon]

Thank you, wise dragon. As I said, I just keep learning about things. Have I been exceptionally lucky to have good GPs and pharmacists, since birth? ?

Now I have a great endo man, plus a lovely ortho surgeon who is going to replace my shoulder very soon. on the NHS of course. I think it has been down to professional quality and the relationships we built. But that takes time and courtesy from patients as well, which is often in short supply now. Sadly.

have just been called senile and pompous by family. I'm not, that 's not nice is it?

[SlowDragon Administrator in reply to Hidden]

But no brand problems, thank you. just 200mcg a day

This is probably the key ……you’re on a good substantial dose levothyroxine

Sadly these days thousands upon thousands of U.K. thyroid patients are left inadequately treated on just 50mcg, 75mcg or 100mcg levothyroxine

In past (before invention of TSH) medics typically prescribed between 200mcg - 400mcg levothyroxine

Prior to widespread introduction of levothyroxine in 1950-70’s , many/most patients were given pig thyroid (NDT) and fared better than being left on grossly inadequate dose levothyroxine

[Hidden in reply to SlowDragon]

I haven't always been on 200mcg,-- only since I got to 60 and retired. GP reckoned my thyroid had retired as well, but did necessary tests. But he always kept an eye on the visible symptoms of hypo and asked about the invisible, like constipation. More recently, when my husband died, I had to move and find another GP and pharmacist. GP said, you can't possibly have 200mcg - I'll cut you down to 150. And I got stuck there for 3 years becoming very unwell until he referred me to an endocrinologist. My request as I hadn't been 'seen' since 1942 by a specialist, and I wanted information. I paid . It was worth £200 to get me sorted out again. And the first thing he did was examine me, properly - visible and verbally, as well as palping the thyroid. So he recommended that I go up to 175 for 3 months, and then up to 200 in February. Things are going good, I don't need T3 but he will prescribe if he thinks it is advisable.

But we discuss what needs to happen, He doesn't just give me instructions.

The only problem has been what I call hyperhiccups , if the T4 goes above 25 for a brief spell and the GP worries about me having a heart attack. He doesn't like me being on 200 for that reason, but we're getting to know each other now. and I'm training myself to recognise the signs of hiccups. . And I can email the thyroid man any time I need to, or just to give him any good news.

What upsets me most about the thyroid its that I can't seem to read a book anymore, and I used to read until 3am. or sew. Was actually reading when my hubby died, so it must be a mental block.

Sorry for running on, I don't talk to anyone live for days on end.

ps Diabetics get clinics, needles , and gadgets to monitor their daily insulin.. and a lot of tv time. Why hasn't anyone invented something for Thyroid folk, without doing frequent blood tests? just a thought! a product of isolation.

[tattybogle in reply to Hidden]

thyroid hormone levels are much more difficult to measure than diabetic blood sugar levels are , we'd all love to be able to have a gadget instead of needing blood tests , but it just not possible for the foreseeable future. The technical difficulties with testing thyroid hormones mean blood tests are currently the only way to do it .

[Hidden in reply to tattybogle]

Thank you, I thought it might be too good to think about.