Whenever I see this type of article - the BBC and others produce these things every couple of years, I think - I start worrying that I'm going to lose access to thyroid hormones on the web. I know this subject came up with the MHRA last year or the year before, but I don't have a link.
The article specifically says they won't tell us what drugs they bought, which is useless for me. I specifically want to know if they are talking about thyroid hormones.
Since doctors are convinced that T3 and NDT are dangerous I worry that they could get restricted and confiscated at customs.
Thyroid patients are mostly women and we are assumed to be hysterical, so our claims of feeling better on thyroid hormones are usually dismissed.
I remember reading a comment from someone on the forum that came from a doctor. I can't remember the actual wording but it was something like :
Patient : I feel so much better on thyroid hormones/Levo/T3/NDT.
Doctor : We aren't here to make you feel better.
If it ever comes down to a straightforward fight between doctors as a group and patients as a group, sadly I know who will win - and it won't be us.
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humanbean I have not long since replied to someone else about an issue which I feel also encompasses your concerns. I don’t have any answers but like many of us, I am sure, our minds work overtime about this. All I can say is I hope we come up with some sort of strategy, sooner rather than later.
Mr. Bates v The Post Office has certainly given me something to think about.
Aside from personal, freedoms, etc., this is precisely why endocrinologists who have suggested/told/advised patients to buy their own T3 (or anything else) on the internet are so very wrong.
I think some have done so with the intent of trying to help. But they are, in the end, misguided. We needed them to stand up and fight - for their own professional status and respect as well as patients.
If every single endo in the UK had fought hard to push the MHRA and NHS procurement people, I think something might have happened. After all, at peak T3 price, the MHRA could have recognised Thybon Henning as approved under German rules and accept that for UK licensing. (Ironically, I think that might again be the case after major brexit dislocations.)
When confronting the CCG at a meeting where they were informing us they were going to be sending round letters to all GPs to stop giving B12 injections and making people buy tablets over the counter, I pointed out the problems (similar to stopping T3) for those patients. They said they only advise but the GP / consultants have the last say. When I saw the endo she said she understands my plight, I will have to get T3 from internet, but there is nothing she can do as she has been told she has to stop, So who was telling the truth, The then CCG saying they only advise or the Endo who says she has been told. I remember a person with hypoT, a member of one of the thyroid groups, proudly telling us that she had complained to Amazon (I think) for selling T3 without prescription. She had seen one of these programmes and thought she was doing everyone a big favour by getting Amazon to stop it being sold. Talk about shooting yourself in the foot. We used to be able to buy it over the internet with a visa card, until some crack down and visa card stopped paying the supplier. One supplier had a lot of money in credit on one of those cards and they refused to release the money to him.
I saw this this morning and like you wondered if thyroid meds were one of the drugs they got hold of. It also caused me some concern that they are going to clamp down on these sites. Worrying.
I feel the same. I have also never understood how & why NDT is considered dangerous when it was widely prescribed before synthetic Thyroxine was introduced.
These are fascinating pieces of evidence, even just from the disagreements presented. Why in the end have they come to the extremely simplistic conclusion that levothyroxine is the only answer to hypothyroidism? It defies common sense and just smacks of utter laziness. Dare I say it’s very convenient too, as from my own perspective and that of others I see on the Forum, we kind of don’t have the energy required to challenge this nonsense. We all only want to get well.
It all seems to rely on an invalid assumption - if there is sufficient T4, the body can and will convert as much of that as it needs into T3.
Even that could only hold in the bucket chemistry view of the human body. That is, if you add enough T4 into a bucket and stir well, then every bit of the bucket contents will have access to that T4 and the T3 that results from converting the T4.
Which might just about work if the bucket is full of liquid. But we have organs, vessels, membranes, etc., full of vast numbers of complex soups, all of which affect how much T3 can be in any particular location.
False assumptions, much modern medicine seems to have them. There is absolute evidence that the conversion of T4 to T3 is NOT all that is required. In a healthy thyroid gland a small, but significant amount of T3 is produced. This glaringly obvious fact is ignored. Why is it produced if not for necessity?. Pharma have captured and driven the agenda and lobotomised a significant proportion of the medical profession in the process.
Lobotomised. I knew that was a word for our endos and GPs. Otherwise why would they be so complacent about our health? I don’t think they swear an oath these days but surely it’s implied. I think they ought to bring it back. Maybe if their brains and bodies don’t hear it out loud, never mind the public hearing it, it’s convenient just to tramp all over it.
so how come heart patients who need operations are given the choice of pig or synthetic parts? If you choose pig you don’t need to take warfarin for the rest of your life but you do if you choose synthetic. It’s complete hypocracy to claim NDT is animal derived so it’s too dangerous to use its complete clap trap. It’s saved tens of thousands of lives and its a darn sight better than Levothyroxine monotherapy the most unnatural thyroid hormone therapy anyone could dream up. White coat 💩
If the problem affects men in reasonable numbers suddenly pig products are perfectly acceptable but if it’s predominantly women they are suddenly too dangerous to contemplate - strange that isn’t it?
If NDT was viagra it would be prescribed with gay abandon for a non life saving outcome. Faulty thyroid or faulty penis I know which one is a priority in this stupid society
It is total rot. If it were injected, that would be another matter. But I can't see what could be transmitted in desiccated thyroid but not in meat, Bovril, Oxo, biltong, etc.
the BBC article specifically says pain killer, anti anxiety and sleeping pills and so I don’t think that thyroid medications where involved. they are also looking at the pharmacy failures to apply current checks and safeguards before dispensing meds rather than looking at the range of medications available online, so hopefully nothing to worry about.
I suspect that if laws are changed in the UK to disallow import of prescription-only drugs without a prescription, then it won't just be certain drugs that will be affected it will be all of them.
Customs officers are not medically trained so the most they do at the moment is check a list of controlled drugs and confiscate those which are on the list. If the powers-that-be start worrying about the import of drugs which aren't controlled I suspect they will just ban import of them all.
What you say is certainly true, but the BBC has reported on a failure to implement existing rules and regulations pertaining to safely dispensing of medications, that is a million miles away from passing new laws to ban all meds coming in from abroad. Most government bodies are so overstretched and in such chaos that I don’t see the former stretching into the later and becoming a bill in parliament, certainly not in the life time of this government and the next government will have, I feel, higher priority things to deal with. 🤞
totally agree! My thoughts exactly when I saw that investigation, a double insult really when lots of us are saving the nhs money by self medicating. I would be the first to take the fight to parliament if they tried to restrict our rights to buy meds for personal use!
Gosh, I had no idea that a controlled substance could be bought legitimately without a private appointment with a GP. I don’t think that should be allowed at all.
Without proper oversight from a medical professional, no company should be able to sell controlled substances.
Another reminder that it’s all a game of money and profit and health care is a business.
The article appears to be about UK online pharmacies rather than the rest of the world.
And formal Controlled Drugs are not legitimately available without a prescription.
But when you look to the rest of the world there are many difficulties.
If the same substance is available in UK and another country, do we expect the pharmacy to check UK rules for everything they sell? Something could be a Controlled Drug in the UK but over-the-counter elsewhere. Or allowed in some dosages/quantities but not others.
If a substance is not available in the UK, what do we expect them to do? Assume it is illegal? Or somehow predict how UK authorities would class it?
I buy a product from Germany - over-the-counter there but the exact same specification product is prescription-only ion the UK. Why do I do this? Because the UK-based company that makes it has gone bust. And the company that owns the brand and distributes it cannot supply it at all. And why should a simple skin cream with some chillis added be prescription-only in the first place?
Too complicated and full of things that are pretty irrational. But most regulatory regimes end up going in that direction and never being properly reviewed.
I know from my international migraine forum that melatonin is widely available otc in the US, as is LDN. I have to buy my LDN privately. The NHS wont supply it, but are happy to give me opiate painkillers, antidepressants and sleep meds instead 🤨
oh yes anti depressants they can ALWAYS prescribe those even if you don’t want them there are some pills they just love to push, but the ones we need we are forced to buy on line. God forbid they make that illegal - we’ll be well and truly lost
Anti anxiety and z drugs are controlled substances. The article mentions they were able to obtain these without seeing a GP. What am I missing here?
I detest that these can be gained from online pharmacies with just a survey. I assumed the online pharmacies provide the prescription. That’s no oversight at all.
I think you might be missing the very specific meaning of "controlled" in UK law and language.
All UK medicines are either Prescription-only (POM), Pharmacy (P) or General Sales List (GSL).
Some POM medicines are further classed as Controlled Substances/Controlled Drugs and have further restrictions such as must be picked up in person, must be signed for, can only be supplied in specific quantities, etc. But this classification doesn't only apply to medicines, it also applies to cocaine, heroin, cannabis, and other illegal drugs.
The article appeared to me to cover POM medicines which are not Controlled Substances.
Unfortunately with the approach doctors take to thyroid cases this is a necessary route for many of us. I was unable to get NDT on nhs ( and even t3 was very expensive for the nhs to prescribe so I chose to buy it myself). The nhs examine and monitor me and two consultant endocrinologist have confirmed I’m doing well. I have paid thousands in buying ndt for myself plus seeing private doctors. I could have used my time and money to fight for T3 on nhs but I also felt it was unfair to make them pay when I could obtain it cheaper ( at that time t3 was around £600 cost to nhs)
I shouldn’t be made to feel bad for taking my health into my own hands when it’s saved the nhs money plus they confirm it’s helping me!
I agree in any one trying to self medicate with thyroid drugs in the face of the barriers involved in thyroid disease diagnosis and treatment.
I will never agree to unscrupulous practices of people being able to gain addictive, dangerous, controlled substances such as z drugs, anti anxiety medication etc which is what the article seems to focus on.
It seems my comments have been misconstrued and conflated with my views on thyroid medication as supposed to control drugs.
totally agree. It is just a shame that we can't all get access to the drugs we do need, as this would take the pressure off the system and allow some bandwith for dealing with the other issues ( of addiction etc.) although as a recovering alcoholic with 8 years sobriety I can say that even legal drugs destrooy lives, the problem in my opinion is the addiction and not so much the availability. although of course it is not good for people to be able tp buy anything they please without oversight, however my primary focus is on hoping the continued availability of NDT and T3 for those of us relying on it for quality of life ( luckily I now see a uk based GP privately who prescribes me NDT but I am paying a lot for that and some not so fortunate to have that option)
I know this. I am not sure but it appears my comments have been misconstrued and conflated. To me, the article is focused on pom controlled drugs not thyroid medications/hormones hence the discussion in this forum about it is being somewhat confused.
Definitely they weren't talking about thyroid hormones (no-one seems interested in those apart from those of us trying to get them!). The article states: "We selected three restricted drugs - an anti-anxiety drug, a painkiller and a sleeping medication." I do experience that same fear though, as I buy T3 myself. We do lead a precarious existence.
I've heard of that phrase being used to patients before. It is truly jaw dropping. But then some doctors do believe, for some unknown reason, that thyroid hormones are addictive.
And anyway, I wonder why your doctor doesn't want you to feel well?
Mine left the building long ago, I blame my kids, I had a decent figure until they came along. The fact they are in their 30's now is irrelevant, the damage is done 🤣 I hope they appreciate the sacrifice I made lol.
I also had this said to me during one of my pregnancies, at the time I didn't realise quite how awful they were at managing thyroid replacement, had had several miscarriages between pregnancies and one (Dr) wanted to reduce my meds so I would put more weight on, 🤯 , they actually said " are you sure your eating, your just trying to keep your figure aren't you" stupid people my response was " what bloody figure "🤣😜
how dare you want a feeling of well being far better to put up with a feeling of being unwell 🙄 sorry but I want a life and I’ve made sure I’ve got one by bypassing this nonsense. I fear for the day when I can no longer look after myself on NDT
Same here. I also fear not being able to conduct my own blood tests and obtain my own meds in order to feel ‘normal’.
Would they rather we couldn’t work and had to see the various specialists for fibromyalgia, rheumatism, depression or whatever terrible thing would happen to us if we left our health and wellbeing to the establishment doctors and endocrinologists.
I know I worked past retirement age by a good few years and I definitely could not of contributed to society if I had just listened to the GP and not educated myself and got on with it.
Many thanks must also go to this excellent forum and the tireless administrators who give their advice freely😘.
Just a thought - I read somewhere recently that we should never say we "feel better" on a certain dose or on a certain medication. The word "feel" is a perception, which doctors can take as in our mind rather than a fact. We should say we "are better".
no just to make you feel out if it or should I say just to be out of it!
When I first took Prozac for depression I could not believe it was legal to prescribe the stuff! I’m not joking I would take it and say ‘we have blast off!’ It was like being skyrocketed into the heavens. But it didn’t last, 6 months later it did very little at all but make me aggressive.
"We aren't here to make you feel better." Hahaha! That is priceless! (Freudian slip?)
But seriously, I share your concerns of by and by more options being taken away from patients and put in the hands of the medical system. Question is, how far can they go with that? Eventually something has to give and a fight will ensue. People can only be pushed so far. There are more patients than doctors. We outnumber them. I hope that will some day translate into more patient power. I feel that already the pedestal doctors stand on is cracking. Already patients are banding together in places like this to help each other out. Maybe one day their will be a patient revolution. More power to the patients! ✊
Maybe we have to get the men on our side. That might move things forward at a faster pace.
let’s hope so, after all their purpose is to serve us but they seem to think we are there to serve them - the arrogance of it! They need pulling down a peg or two
But there’s a lot more behind it that’s hard to overcome even with numbers
No one except us (those affected) is interested in further restricting thyroid medication/hormones.
The ease of private testing, along with somewhat ease of private prescriptions as well importing from abroad, it’s pretty obvious it is such big legitimate business.
We are already in a period where more and more GPs accept the results of private tests for example.
The article is very clearly about addictive and dangerous pom controlled drugs in the UK, which simply cannot be compared to thyroid medications/hormones. Even when taken carefully, taking one generally sustains life, having the other generally risks lives.
The real issue which this articles ignores (as all BBC articles are good at) is patients being let down by the NHS to safely access and use addictive drugs. Laying the problem on an individual level, rather than at a system.
Gosh! I can’t believe how much energy I have given to a BBC article.
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