Facts regarding the LEGAL purchase of NDT and Liothyronine from your local pharmacy.

It is certainly possible where I live to get NDT from a nearby NHS hospital ( the Royal Liverpool ) if you complain to your GP long and hard enough and therefore are issued with a referral. A consultant there, who is surprisingly NOT an endocrinologist, has been given the authority to issue hypothyroid patients who are referred to her with NDT on a PRIVATE prescription. The cost is, however, considerably more than sourcing a similar product from abroad (eg Thyroid-S) when you take into account the smaller quantities involved, the pharmacy's charges and the premium cost of Armour.

I suspect this responsibility has been set up to fob off consistent complainers like myself, and to a non-endocrinologist as my local CCG insists that NDT can only be supplied on an NHS prescription on the advice of a genuine endocrinologist.

Liothyronine was a legal "drug" for many years for the treatment of hypothyroidism but some CCG's insist that it has been withdrawn purely due to cost even to existing patients when that contradicts the rules set out by the appropriate medical body. On the basis of the above situation re NDT, I can see no logical reason why the patient cannot therefore insist that liothyronine be supplied on a private prescription. The cost involved would be significant, but the supply would be guaranteed.

I can take this even further by stating that one reason NDT is not licensed is that it has not been subject to appropriate modern trials. The West Lancashire CCG states that liothyronine has also not been subject to similar appropriate trials. The MHRA has stated this to me: "For the following licenses [Activis, Teva and Mercury] we have searched our records (including our archived paper

records) for the details of clinical studies submitted with the applications, however we have been unable to obtain this information."

To achieve consistency and credibility it is therefore logical to either remove this rule for NDT and Liothyronine or BAN Levothyroxine for the very same reason unless the results of the appropriate trials are supplied to the public. Many people have strong beliefs that this evidence does not actually exist even though the NHS's Special Pharmacy Service (SPS) in its November 2018 statement regarding the use of NDT state that numerous medical bodies " recommend that synthetic levothyroxine (tetra-iodothyronine, or T4) monotherapy is the standard treatment for hypothyroidism, due to the robust evidence supporting its use."

If appropriate action is not taken by the NHS, logically to remove this rule for NDT and liothyronine, they really are hypocrites.

[shaws]

Natural Dessicated Thyroid Hormones was the very original replacement from 1892 until T4 (which was eventually synthesized by biochemist Charles R. Harington in 1926) and began to prescribed. T4 took over from NDT with the withdrawal of NDT by the NHS/BTA even though may people recovered on NDT and other patients not being given the opportunity of trialling options.

Big Pharma by developing T4 plus blood tests and promoting them rather than doctors using symptoms too for diagnosis and so, in the UK. patients have no options if levo isn't improving their health. Before 1892 people died with myxedema coma.

Not forgetting the immediate removed of T3 and no notice given. Thousands left in the lurch and revert to being unwell. Not everyone can afford to pay for replacement hormones.

The Association was sent a Rebuttal to their excuse to remove NDT and he wrote to every year for three years before he died . The BTA did not respond once to Dr. Lowe and as he was a scientist/logistician they couldn't argue with him.

Just came accross this from TUK dated 2009 - ten years ago now and I wonder if they responded to Thyroiduk?

thyroiduk.org/tuk/About_Us/...

thyroidscience.com/Criticis...

[TeamMK in reply to shaws]

Shaws/Admin. I have read the letter dated 25 March 2009 - thank you for attaching, it is stark. I am presuming it was sent to no avail judging by comments from desperate people on this forum. Was there a response that you are aware of? Were "they" required to provide their references to so-called overwhelming evidence etc etc?

[shaws in reply to TeamMK]

Re 25th March you'd have to contact TUK themselves (the Office) or email Lyn Mynott who, with two staff, and am sure their families assist when necessary who do sterling work to change attitudes. She and other thyroid help groups had a meeting in the Lords and Lord Hunt in particular.

Re the second link Dr Lowe died through an accident and his website was closed I will try to see if I have a copy of the second link. In the meantime this is an excerpt from the following link:

" I received the question below at [e-mail] yesterday. Since I wrote my answer to the woman's questions, I've had to control the outrage that I must quash inside myself every day. It wells up from my awareness of the misery hypothyroid patients suffer from the commercially-driven dictates of the endocrinology specialty (dictates that the specialty euphemistically calls "practice guidelines").

At the same time, I've felt a mixture of other emotions from my memory of conversations with many practicing clinicians. They've admitted to me that they know the specialty's dictates harm patients. They comply with the dictates, however, from fear of retaliation from the endocrinology specialty through medical regulatory boards.

I feel especially outraged over the suffering of British patients from the recent diagnostic and treatment recommendations of the British Thyroid Association and the Royal College of Physicians. I say "especially outraged" because I fully expect that the recommendations will cause even more widespread suffering than already afflicts so many British hypothyroid patients."

drlowe.com/emailnewsletter/...

[silverfox7]

I have heard that NDT was grandfathered in but can't remember who told me and when but I was put on NDT over 30 years ago by the NHS and had no problems being prescribed it but did have problems getting it due to a strike in Canada meaning it wasn't being delivered. Eventually I couldn't hang on any longer and went onto Levo.

[helvella in reply to silverfox7]

I think the term "grand-fathered" is actually a USA term.

In the UK, desiccated thyroid (called Thyroid BP) was available until the 1980s. As I understand, it was introduced before medicine licensing and simply carried on being produced.

[Rapunzel in reply to helvella]

You'd be surprised to learn then Rod, that in financial services (guilty as charged) the term grandfathering applied to UK investment vehicles grandfathered in as financial regulation became subject to EU rules.

Same as it ever was

[helvella in reply to Rapunzel]

I should have been specific that I was referring to the transition from no licence regime to where we now are. But you are right - definitely don't want to misinform.

[silverfox7 in reply to helvella]

It was probably in the 80'sxi was taking it. Wish I had t changed in some ways but I was. About 3 months without any medication and a young family so changed to Levo. To be fair I was good with that as well, think helped being optimal as GP had same problem and a husband whatching me like a hawk! But menopause messed things up so now taking Thyroid S, around 4 years now.

[silverfox7 in reply to helvella]

Iwasput on in 1986 as far as I can remember. My then GP was diagnosed at the same time but asked me to send my husband along for a chat. He was a science based Endo like diogenes so knowing far more about the working thyroid than any medics seem to. I think I took it for about 5 years till a long strike so went back on Levo and it be fair was good in that but I was put on a correct dose for me. Sadly doctor moved on and I’ve lost my husband but the fact I’m now back on NDT says it all really!

[siddooo1]

Hi Panda321

There is a Doctor at Salford Royal Hospital, who is currently trying to get funding for a study into NDT.

Salphy posted a while ago, asking for people to fill in a questionnaire. So, hopefully he will get it.

Kind regards

Sidd0001

[RedApple in reply to siddooo1]

More info on this here thyroiduk.org/tuk/newspage....