Doctors interfering with thyroid treatment - Thyroid UK

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Doctors interfering with thyroid treatment

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17 Replies

So I saw my GP this morning to check my BP (currently treated) and she said she's worried about my "very low TSH" (<0.01). She also is not comfortable about me being on NDT (she does not know I'm on Thyroid-S, I told her I take Armour prescribed by a Belgian doctor because I think she would freak out if she knew I was taking a Thai version of it).

She suggested, out of the blue, to prescribe 50 mcg of Euthyrox "and see how I feel on it".

I did not bother telling her that, during the ten years I was on T4 only, I needed 200 mcg daily just to get my FT4 levels anywhere near top range.

I simply told her "no thanks, I am staying on NDT, I have had a suppressed TSH for over 15 years and am still alive and kicking. If anything happens, I will take full responsibility for that".

But one thing is really striking:

I cannot imagine a doctor telling a patient to stop any other kind of treatment prescribed by a fellow physician. I cannot imagine, for instance, a doctor telling a patent to go off anti-epileptic drugs or beta blockers or any other drug prescribed by another doctor. So why do most doctors seem to consider it legitimate to interfere with thyroid hormone replacement prescribed by another doctor, without even talking to that other doctor...?!

This is the third time in as many years that a doctor has tried to interfere with my thyroid treatment and put me back on T4. I will always refuse to do that, of course, but am beginning to find it very presumptuous of them to interfere with treatment prescribed by another doctor...what gives them that right?! Isn't there a code of honour between physicians that you don't alter or stop treatment prescribed by a colleague without consulting him or her first...?!

It's so damned annoying!!!

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17 Replies
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shaws
shawsAdministrator

The main problem is that the 'authorities' have made decisions that affect every person who takes an alternative to levothyroxine ie liothyronine/NDT.

The fact that the following is an untruthful 'declaration' by those who should know better (and don't) and that Dr Lowe wrote to the BTA etc every year for three years asking for a response to his communication, they never did. They just wanted to remove another hormone replacement that has been in use, safely, since 1892 and the proof is that many hypo patients can recover and research shows NDT is not harmful.

Dr Lowe sent a Rebuttal to them but they never did respond. I wonder if the 'organisations' get something from the producers of levothyroxine and not forgetting the 'extra' prescriptions for remaining symptoms that aren't relieved with levo (for some people) but have no options prescribed nowadays. We used to get T3 (maybe added to T4) or NDT if levo didn't improve our health but now to make False Statements!!!!!

thyroiduk.org/tuk/TUK_PDFs/...

thyroiduk.org.uk/tuk/thyroi...

As regards the TSH - thyroid stimulating hormone - are the medical profession aware that this is from the pituitary gland which rises if our gland isn't producing enough hormones?

If our TSH is low it doesn't mean we've suddenly become hyPERthyroid but they are unaware that hyper isn't the same as hypo so they are very confused and even worse, to adjust our doses without doing a full test including FT4 and FT3 we are at the hands of people who're suppossed to be more educated than us who have hypo but, unfortunately, we have to educate ourselves.

Doctors who were trained before levo was introduced, knew all clinical symptoms and we got a trial of NDT which was slowly adjusted until we were well again.

One doctor in particular, Dr Skinner, had to appear before the GMC a number of times and it wasn't his patients who had complained as the GMC received 10,000 testimonials from his past patients stating their 'lives were saved'. He appeared more than a few times before the GMC and one of his 'patients' did a calculation about the 'odds' of a doctor appearing before them because he made patients well. (I cannot remember the numbers) but it was in the 'thousands' to one',

Dr Peatfield was another who was persecuted and then he resigned his licence but was able to 'advise' sick people on how best to recover their health.

Read 'Tears Behind Closed Doors' (from TUK) and the woman who saw Dr P then went on to assist Dr Skinner who was getting all these patients from everywhere in the Uk who were being by-passed and who was always trying to change the attitudes of the medical profession who will not listen to other doctors who know more than them in relieving symptoms.

Dr S even had a Conference Arranged and invited all Endocrinologists in the UK and one-by one they all refused, the last the evening before it was due to take place.

In the USA big pharma gave the Association $1 million dollars. If we don't improve on levo we will be prescribed 'other than hormones' to try to control our symptoms.

Is it all about profits and unconcerned about disabling symptoms which can be relieved with the right hormone replacement for us as individuals?

9 likes
Hidden
Hidden
in reply to shaws

I agree!

My hormone doctor told me last week she and many other ‘Hertoghe doctors’ cannot take on new patients and have a waiting list of 12-18 mos for existing patients. They need more doctors and training is offered at Dr. Hertoghe’s academy. But she said one problem is that doctors prescribing drugs such as NDT, T3, cortisone for adrenal fatigue, and growth hormone and DHEA as anti-aging treatment, tend to be ostracised by the medical community, and this is making it difficult to find more doctors willing to work with other drugs and diagnoses than those recognised by the authorities...it’s really sad.

She said it’s easier in the US. I wouldn’t know. What I do know is that the situation in Europe is disastrous.

5 likes
shaws
shawsAdministrator
in reply to Hidden

I cannot understand why the 'authorities' have insisted that levo alone is now to be prescribed.

In Scotland - due to some members of their Parliament having hypo and who don't recover on levo - have managed to change the rules for those who're hypo.

They can source T3 or NDT if warranted.

As it is mainly females who develop hypo - we are at the mercy of those who seem to be completely unaware of how disabling the symptoms can be - they know none at all - but depend upon a blood test which results changes throughout the day but who ignore that alternatives can alleviate them.

6 likes
UrsaP
UrsaP
in reply to shaws

IMO this is a deeper problem. I tent to think that there is a determined push to eradicate t3 in any form (NDT) from prescription. For years now the training in thyroid has been dubbed down to TSH and T4 only mono-therapy. Dr’s do not seem to be trained in a nothing T3. And thyroid treatment history seems to be off the agenda too. One ‘specialist’ told me that he didn’t know what NDT was and knew nothing about rT3? Either he was not an endocrinologist or his training is seriously lacking. I believe this lack of training serves the purpose of discouraging dr’s from issuing anything but T4. No dr is going to take responsibility for issuing NDT or T3 when they know zilch about it.

I think the cost is a red herring. cost has been manipulated high. It has been allowed to be price hiked.

Now, the MHRA are putting even more ‘restrictions’ and ‘procedures’ in place to make the use of T3, in particular more difficult and even more expensive. i.e this idea of having to dissolve a 20 msg tablet, only allowed to take 10mcg and having to throw rest away? (This for someone who was on 60)

All this smacks of the ‘sabotage’ on NDT in the 1960’s, just after they discovered T3 was produced alongside of T4 and not just converted from T4, rendering the newly developed (£££££) synthetic T4 already ineffective. They could not allow that to become public knowledge and lose all that development costs. So easiest thing - sling mud at NDT push it off market and no-one the wiser.

They didn’t figure back then on the power the internet would eventually have, and the fact that patients are clever enough to read and understand some of this medical stuff.

So now they are doing anything they can to stop anything with T3 being issued.

Corruption abounds!

6 likes
Hidden
Hidden
in reply to UrsaP

Yes, it's really awful what's happening! I am also worried because of the three Thai NDT drugs that used to be available one has been discontinued and another one is currently unavailable and may be discontinued as well. Given all the problems with prescription brands of NDT (unavailability, reformulations making them work less well, recurring shortages and supply problems), if the future of NDT is threatened, the future of synthetic T3 may very well be as well.

3 likes
UrsaP
UrsaP
in reply to Hidden

Oh the future of T3 is definitely being threatened. Having fought to keep it on the formulary it is still not being issued to most, and those of us who are still prescribed are now finding it difficult, if not suddenly impossible to get. Supplies suddenly running out without any warning sounds dodgy to me. When the SMT stopped sourcing my brand of T3 last year I had some waring as the tablets ran out. Having found a supplier for the pharmacist to use, all above board, suddenly this month a few of us are being told there is a shortage, though conflicting responses on this from the company. So who is instigating the shortage.

I was in Greece and went chemist hopping for T3. Knowing the situation is worsening here. Whilst T3 over the counter there is 2.30 euros, for 28 tabs which would be c£230 here in UK, they too are stuggling to get it. One chemist did say there was no alternative to T3 (good man) another said the shortage due to them sending it to UK because they can get more money for it here. Must be through private as no one getting it on NHS?

There is more to all this. A determined push to stop us having anything containing T3. Cost is a manufactured excuse. Benefit is the key.

1 like
Hidden
Hidden
in reply to UrsaP

Yes, I have also been wondering about manufacturers of NDT suddenly "running out of raw material"...it's not like we are suddenly no longer slaughtering pigs, is it, so that also does not sound very convincing...

Hidden
Hidden
in reply to UrsaP

Yes, I agree about prices...I cannot imagine synthetic T3 is that much more expensive to manufacture than levothyroxine so fail to see why T3 is so expensive.

1 like
UrsaP
UrsaP
in reply to Hidden

I understand there are stricter and more specific manufacturing procedures that could account for some difference in price, but when it is 100x less expensive abroad than in UK there is something very wrong. Someone is lining own pockets!

1 like
Panda321

This is what comes of failing to tell your doctor the truth, that you have been forced to take NDT because the NHS (or whatever in other countries) are totally biased into believing(?) that levo alone will always make you well. You, and everybody else, need to impress that you have no wish to remain ill for the rest of your life, say what you have had to do to get well, tell him how disgusted you are that he is not allowed to prescribe it and tell him that now that he knows about it, he is obliged by the General Medical Council to inform every other patient who reports similar ill health that they may feel well by taking it, despite the fact that he is prevented from prescribing it.

Tell him also that this sort of TSH is perfectly NORMAL when taking NDT, to mix Levo and NDT is simply a NO! NO!

Believe every word Shaws says but realise that this is a condensed version of all the relevant facts.

There is no need to be concered about the actual future manufacture of T3 as it is an important medication during RAI and for the treatment of myxedema. Whether any of it will be available for anything else, on private or NHS prescription is another matter.

3 likes
cazmania7
cazmania7
in reply to Panda321

Hey Panda, sorry to hijack! Some do take levo and NDT I believe? This is what I am currently starting (but pausing until I can improve iron)

Hidden
Hidden
in reply to cazmania7

I'm not Panda, but there is nothing preventing you from taking levo and NDT.

However, many who switch to NDT do so because they are poor converters, in which case adding T4 won't make much sense.

I guess NDT + T4 could be beneficial in someone needing a little T3 and mostly T4. In that case, I would expect that person to take a rather low dose of NDT. But, as I said, that would make sense only if you are a good enough converter and need mostly T4 and a little T3 to rid yourself of all symptoms. The problem is many hypothyroid persons need more T3, not T4.

My impression, although not backed up by statistics, is that there are more people on NDT + T3 than NDT + T4.

I see no reason for a poor converter to add T4 to NDT.

Some patients worry about their FT4 levels being rather low on NDT, but that is normal when taking T3 and there is no need to add T4 for that reason only.

1 like
cazmania7
cazmania7
in reply to Hidden

Thank you! Cool. Well I’ve got that test actually which will tell me if I have that gene issue with converting so that will help me. But yeh I think a lot of people swap the levo for NDT completely. Thanks for the info!

Hidden
Hidden
in reply to cazmania7

Yes, it's no using taking levo in addition to NDT if you don't need it.

1 like
Angel_of_the_North

Refuse to allow the GP to do thyroid blood tests, then she won't know. Do you have to see GP for other meds? If not, just stop going.

Hidden
Hidden
in reply to Angel_of_the_North

My GP wanted to order tests, I told her I'd just had them done (ordered by hormone/Hertoghe doctor) and she asked me for a copy...I just figured it would be easier and cheaper than having them all over again. Plus, the TSH is something all doctors ask for when ordering tests, and mine is <0.01 so they are bound to freak out. I just did not feel like paying for the same tests all over again, just to be told me TSH is too low (as it has been for the past 15 or so years...).

The only reason I need a GP is for the occasional script for antibiotics, annual flu shot and, lately, hypertension which she put me on drugs for. She now wants to supervise my BP...she wanted to see me every four weeks but I told her that in itself is stressful and that I think every twelve weeks would be more than enough...she ended up prescribing BP meds for 90 days instead of 30.

I just hate doctors and try to avoid them as much as possible. As soon as I set foot in a doctor's office, they find a new ailment to treat me for. This time, it was hypertension. GP wanted to refer me to a cardiologist but I refused. Hypertension is not, after all, a disease, it's a symptom (in my case no doubt stress). My lungs are clear. My heart sounds normal although my heart rate seems to accelerate as soon as I set foot in a doctor's office. There is nothing a cardiologist can do for me, except order stupid tests and exams for thousands of € before declaring me perfectly healthy...I've simply had enough of it.

2 likes
helvella
helvellaAdministrator

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