The Same Thyroid Issues Everywhere

[helvella]

We all too often see people lamenting the NHS and its treatment of thyroid disorders.

But we also often see people lamenting that even when they have seen private endocrinologists they are no better off than NHS.

And for those of us who have long been readers of USA forums, we see the same issues there. (Even though desiccated thyroid is an FDA-approved medicine.)

And in France desiccated thyroid is illegal.

And in the Netherlands they had to set up a group to prevent desiccated thyroid from being made unavailable:

Welcome

The Association of Users of Natural Thyroid (VGNS)'s aim is to promote the interests of users of natural thyroid hormone in a broad sense to represent and thereby to act as intermediary between patients and official bodies.

The VGNS was on June 16, 2010 by notarial deed after a successful operation to preserve the natural thyroid thyreoidum, a hormone that is essential for the quality of life of users and possibly many others.

The VGNS criticizes the regular diagnosis and treatment of thyroid patients and sets explicitly aims to increase awareness of non-formal diagnosis and treatment with natural thyroid hormone, so that more patients detected and treated adequately. Thyroid Diseases, to which women are eight times more likely than men to suffer, unfortunately belong to the most missed diagnosis.

Our information brochure can be downloaded and printed. You fold it over like a business letter. This you could bring to your (family) doctor or specialist, if you want to provide them with information. See here for more information.

translate.google.co.uk/tran...

or

tinyurl.com/bojxdpb

Not sure if either of those will work to translate to English. The site itself is:

vgns.nl

I have read of significant problems in Japan, China, Australia, New Zealand (and our Teva issues last year were as nothing to the issues they had from a reformulation a few years ago), Israel (similar issues to NZ), Germany, Sweden, Iceland, Canada, Italy, France, Ireland, ... Indeed, these are the ones that immediately came to mind - I suspect there are dozens more I have read about, and probably all countries actually have problems.

It is so, so easy to feel that the issues are treated particularly badly here in the UK. I hold that it is very difficult to back that up. There are so many holes in diagnosis and treatment everywhere.

I simply cannot find a country which has thyroid diagnosis and treatment I would be happy to call "adequate" - let alone "good" or "excellent".

So whilst we can rightly complain about specific NHS failings, we need to remember that even with adequate funding, getting to "good" is difficult. Neither we nor GPs and endos know what the best path would be. Improvements to get closer to adequate might be more readily achievable but even then, some of the fundamentals are still not properly researched.

Rod

[Hidden]

You are so right to point this out Rod and it's why I was at pains in the parliament to state that all my treatment had been with private endos, to little success.

There is research coming through and if it gathers pace, must surely be listened to. I quoted from a paper by John Midgley at the petition meeting and today he alerted me to it now being published for a worldwide audience on MDLinx.

mdlinx.com/endocrinology/ne...

The last sentence of Professor Hoermann's commentary speaks volumes about the state of play and where we need to head now I think. An uphill struggle though for sure.

[helvella in reply to Hidden]

From my earliest involvement in things to do with thyroid, a few things have been obvious:

Even if TSH works (unexpectedly) well for many people, it simply cannot do so in all cases.

The interplay of even the most basic things (e.g. FT4, FT3, TSH) is complex and we only stand a chance of understanding by use computer simulation. Short of that, we can only act empirically - adjust dose and check how the patient does, repeat.

There is next to no translation of well-known things (e.g. gastric parietal cell antibodies in around 25% of Hashimoto patients) into clinical practice such as checking B12 or avoiding stomach acid suppression.

Midgley and Hoermann are very, very interesting.

Thanks, lala.

[PR4NOW]

Rod, I agree and I think a lot of the problem stems from the leadership role of the US and UK and their respective endocrine standards bodies, AACE, ATA, RCP, BTF, and the BTA. Diagnoising thyroid has never been easy on a mass scale and although I understand the desire to adopt a laboratory standard, the arbitrary decision in 1973 to use the TSH as the primary standard and the subsequent end of teaching doctors how to clinically diagnois hypothyroidism has had the worst possible result for thyroid patients. Dr. Brownstein says the TSH only catches about 25% and Dr. Holtorf says about 20% and Dr. Derry observed that it can take years for the TSH to catch up to the clinical presentation of symptoms. It is ironic that after 120+ years of thyroid experience in medicine, it is the worst possible time for thyroid patients. Endocrinology is just like a dog with a bone, they are not going to turn loose of ignoring the patient and treating the lab test. If I had a brillant mind I might be able to think of a solution. Since that is not reality it is up to all the mis-treated thyroid patients and all the support groups to keep pushing with all their might to change he world. PR

[helvella in reply to PR4NOW]

It sometimes feels as if everyone here in the UK thinks it is absolutely wonderful everywhere else. While I am prepared to believe that the "average" standard of care in, for example (and because I am responding to you, PR) the USA, is higher than here, it certainly does not seem to be a shangri-la. So far as I can tell:

Desiccated thyroid pots don't hang from the trees.

Endos don't come offering "get well in three months or money back" deals.

If you don't take Synthroid, you are likely told that is why you are not well.

If you want anything other than levothyroxine (of whatever brand or generic), you possibly have to convince your insurer/HMO.

You can't get to see the endo who has the good reputation in your area because he doesn't take your insurance.

Doses are still adjusted according to TSH almost regardless of anything else.

On top of all that it always appears that you have even more than your fair share of charlatans and snake oil salesmen.

I would be happy to see a decent critique of thyroid healthcare from contributors around the world - each of their own country, primarily.

Rod

[PR4NOW in reply to helvella]

Rod, this is all pretty much true. Although we do have some bright spots it is not the garden of eden as far as thyroid goes. Give me some time to compose my thoughts and I will attempt a critique of the US and a comparison to the UK. PR

[helvella in reply to PR4NOW]

I shall await with very keen anticipation...

[Maddie]

An artice by the BTF on prescribing trends round the world, mentions that Germany has two brands of combination T4 and T3 medication and that in Norway many Norwegian patients use a small supplement of T3 for better cognitive function, usually 5mcg twice a day.

It woud be interesting to hear from thyroid patients in those countries to see if they think that they get a better service than the rest of us - Maddie

[helvella in reply to Maddie]

Germany has large areas which have low iodine intake. For that reason they do appear to be rather more on the ball than some other countries. However, I have heard it suggested that once you get away from things directly related to low iodine (with which they might be obsessed) and, more recently, the possibility of Chernobyl caused cancers, they are no better than elsewhere.

They also have two makes of lactose-free levothyroxine available.

If we have any German experiences to add... ?

Interestingly, the USA technically has got a T4/T3 combo in the form of Thyrolar. But that has been off the market for several years as they have been unable to meet revised potency requiiements (or so their site says).

thyrolar.com/

I did not realise/remember about Norway!

Rod

[Maddie]

Hi Rod - That's a shame about Germany, I always got the impression that they were more open minded in their approch to chronic health problems.

Don't know if you were aware that, according to the BTF, the UK is now officially iodine deficient;

btf-thyroid.org/index.php/t...

The ink for the info about prescribing in Norway is;

tinyurl.com/bjw8vjf

You will need to scroll down to the Norway section - Maddie

[helvella in reply to Maddie]

Yes - had read that.

So why does no-one get tested? Seems to be obvious that if we are indeed iodine-deficient, something needs to be done. And one uncontroversial step would be to increase iodine testing to see what the reality is - not only in a small group of teenage girls. Why has NICE not been told to get on with recommendations?

I am sure I had read most of that about thyroid treatment around the world. But I am sure I forget more than I remember!

Rod