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Hypothyroidism - Do you take T4 levothyroxine and yet still feel ill?

pimpernel
Grafter
Posts: 72
Registered: 20-09-2007

Hypothyroidism - Do you take T4 levothyroxine and yet still feel ill?

Of the 2 million in the UK who take T4-levothyroxine for hypothyroidism, approximately 300k continue to suffer for various reasons when this medicine fails to work properly.
This chronic (ie lifelong) illness occurs when the thyroid gland fails to produce enough of the hormones required to keep the body's metabolism working properly or when other parts of the endocrine system fail to work as intended.
T4-levothyroxine is the ONLY medicine you are ever likely to get for this condition on the NHS, but if you are one of the 300k (as I am, having no thyroid gland at all) for whom it is the WRONG medicine, you will continue to suffer for the rest of your life as the doctors are programmed to refuse to give you proper treatment.
I was kept ill for 8 years by my doctor; I constantly told him I was on the wrong medicine and all I ever got was a blank stare, stupid excuses, a prescription for weight reduction and an instruction to "sort myself out".
So I did, I went to the website of "The Thyroid Patient Advocacy" and discovered the truth. I am now taking Natural Desiccated Thyroid (NDT) that I buy myself LEGALLY from Thailand and all the rotten feelings in my head have disappeared, I no longer get severe fatigue and I am slowly regaining my lost health. Whilst I was on T4, I was unable for most of the time to take the full dose and consequently suffered Carpal Tunnel Syndrome, gout, a severe weight increase and kidney cancer. I am now hoping to be able to go on holiday next year; my last one was in 2006.
I am not trying to promote some silly medicine that costs a fortune but does nothing. I am trying to promote a return to good health of any of you who are within this 300k. If you take T4-levothyroxine and feel perfectly fit and healthy then you are lucky, if you feel unwell taking this medicine, then go and have a read of this forum/web site, it could change your life.
For me NHS-prescribed T4 is poisonous and NDT is a life saver. My nephrectomy operation for kidney cancer was like a walk in the park on a sunny summer afternoon, feeding the ducks. The loss of my thyroid gland was like a trek through the Amazonian jungle at night being pursued by a tribe of hungry cannibals. Thankfully that nightmare is now ended for me. If I had remained on T4, as my doctors advised, then it could easily have resulted in me losing my other kidney, a possible death sentence that is.
Please be positive in any replies you make as this post is deadly serious and could be life-changing for some readers.
It will be difficult for some of you to understand that doctors actually WANT some patients to remain ill, but I can assure you that it is perfectly true.
Please PM me if you want more details.
9 REPLIES
VileReynard
Seasoned Pro
Posts: 10,583
Thanks: 192
Fixes: 9
Registered: 01-09-2007

Re: Hypothyroidism - Do you take T4 levothyroxine and yet still feel ill?

You can be prescribed NDT.
You can also purchase it from UK pharmacists - http://www.thyroiduk.org.uk/tuk/treatment/where_to_get_desiccated.html
However, you are crazy to self-medicate when you are not having blood levels tested regularly.

Mayfly
Aspiring Pro
Posts: 1,078
Thanks: 67
Fixes: 1
Registered: 04-06-2009

Re: Hypothyroidism - Do you take T4 levothyroxine and yet still feel ill?

I had an over-active thyroid and it couldn't be controlled. I needed two doses of radioactive iodine therapy and then of course it stopped working altogether.
I have to have a daily dose of thyroxine now and I am stable but it did take a number of years of switching dosages.
My doctor at the time always asked me how I felt in myself because his opinion was that just because blood levels say you are in the 'acceptable' range doesn't mean they were right for me, in fact he was happy for me to self medicate depending how I felt as long as I had regular blood tests. Never heard of the alternative but if I were you I would seek out another doctor who would be more inclined to listen to how I was feeling.
pimpernel
Grafter
Posts: 72
Registered: 20-09-2007

Re: Hypothyroidism - Do you take T4 levothyroxine and yet still feel ill?

You should be able to get NDT from ANY pharmacy IF you can get a doctor to prescribe it as it is not an illegal substance. You will never be able to buy it over the counter in the UK. However, all doctors are subject to being hounded and even struck off the medical register if they do prescribe it.
All Clinical Commissioning Groups are currently in the process of "blacklisting" NDT which means that IF your doctor does prescribe it and thereby risks his livelihood, you will have to pay for it yourself. NHS-Armour costs £1 per pill, NDT from Thailand costs 4p per pill.
In reply to vilefoxdemonofdoom, my doctor has been doing blood tests on me for 8 years which, as he admitted, have been "all over the place". My next one will give him a shock. He has never suggested doing anything different than to "keep taking the tablets". I consequently nearly lost my life (that is no exaggeration) on the operating table with cancer, caused by my body being incapable of keeping in check all of the rogue cells that cause cancer. If that is good practice then Elvis Presley has returned to earth as an invisible goat and is living in my garage.
NDT has given me back my life. I had given up all hope of ever feeling well again and was dreading my annual scan which could show more cancer.
If doctors can deliberately keep me ill for 8 years when a simple solution exists which the Royal College of Physicians effectively forbids them to prescribe, then I will self-medicate. You would do exactly the same in my position, I can assure you. Like yourself, I once considered my GP to be a God. I don't any more.
The actual reason for NDT being an unlicenced drug is that it actually works and actually does relieve all the symptoms of hypothyroidism without making you feel ill.
Just think how many unnecessary prescriptions are made out for all those for whom T4 does not work and the profits this makes for the pharmaceutical companies who fund the research being carried out by doctors all over the world. Why have they put up the price of Armour to an extortionate level unless it is to reduce sales and make more people ill? There are no R&D costs for sure as it has been used since 1892.
It is a total disgrace that I would have received far superior treatment in 1914 than is being offered to me in 2014.
If you are taking levothyroxine, yet you still feel ill, then do go to the website of "The Thyroid Patient Advocacy" to find out how to get well again. Your doctor either does not know how to get you well or will not admit it as it could mean him losing his medical practicing licence.
myredhotcar
Grafter
Posts: 457
Registered: 06-11-2013

Re: Hypothyroidism - Do you take T4 levothyroxine and yet still feel ill?

Community Veteran
Posts: 1,850
Registered: 11-08-2007

Re: Hypothyroidism - Do you take T4 levothyroxine and yet still feel ill?

i've been taking either iodine tincture (four drops per day), or potassium iodide (0.04g/day) since forever and it encourages the thyroid to make what it lacks through dietary deficiency.
it's no use banging on to the quacks about this as they won't listen and insist on giving the thyroid what it can make if it has the tools.
only one doctor, ever, has accepted my assertion and we tested it.  the result showed i was correct.
i'm still overweight, but i no longer suffer that draggy, sluggish, can't-quite-wake-up drudgery that blights a life.
VileReynard
Seasoned Pro
Posts: 10,583
Thanks: 192
Fixes: 9
Registered: 01-09-2007

Re: Hypothyroidism - Do you take T4 levothyroxine and yet still feel ill?

pimpernel
Grafter
Posts: 72
Registered: 20-09-2007

Re: Hypothyroidism - Do you take T4 levothyroxine and yet still feel ill?

myredhotcar,
Please look up the news reports about Stephen Barrett,( M.D.or is he?), the author of that website. You will discover what a load of claptrap, lies and untruths his website really is.
artificer,
Iodine is an excellent product and one I would take regularly myself if I had my life again. Iodine is the product used by the thyroid to produce the myriad of hormones essential to your health, but it's useless if you haven't got a thyroid, like me. Just don't overdose!
Mayfly
if you still have any symptoms of hypothyroidism go to the website "Thyroid Patient Advocacy" for advice on treatment.There are several doctors, who actually understand the endocrine system, who contribute to our enquiries. You are most unlikely ever to find one yourself who knows any more than they were taught at medical school about the thyroid.
If you don't believe me then ask your own doctor to explain why it is that a normal thyroid bothers to produce any T3-liothyronine, when other organs in the body convert the T4 the thyroid makes into the same product - T3. Medical trials have suggested that this source of T3 is essential for health but I can't find anybody who can give an accurate answer to that simple question. So what chance is there of your own GP understanding the more complicated matters?
The precise details of how the thyroid works are still largely unknown. All I know is that levothyroxine makes me ill and my life not worth living, NDT keeps me well. Both products remove all traces of hypothyroidism. Nobody can alter that truth.
myredhotcar
Grafter
Posts: 457
Registered: 06-11-2013

Re: Hypothyroidism - Do you take T4 levothyroxine and yet still feel ill?

I am familiar (not personally) with Stephen Barrett MD. He is well-respected among the medical community as is Quackwatch.
Community Veteran
Posts: 1,850
Registered: 11-08-2007

Re: Hypothyroidism - Do you take T4 levothyroxine and yet still feel ill?

pimpernel, the topic title is hypothyroidism, which i addressed.
athyroidism is a different condition and must be hard to live with.  with no thyroid function at all, you have to depend upon what your medics offer.  you could discuss your condition with them and see if there is anything they can do to help.