I posted about this letter and hope it's possible to read this page which has the main points!
I used to buy my Thyroid-s from a well known shopping site. This ended. I was worried about buying from Thailand and asked about getting NDT on a named patient basis. This was refused as they said I had to go on Levothyroxine first. They made me go without meds to get a 'baseline' blood test.
Then once I was ill they wanted to start me from 25mcg. I complained and they changed it to 50mcg. When I made a written complaint I got referred to an endo and now have a prescription for NDT but it's taken almost a year of being sick and at the time, unable to work. I've also developed an enlarged heart. I can't believe they think that's perfectly fine.
Written by
Pinebunny
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Are you optimally medicated and as well as when you were buying your own NDT?
I'm not one for giving in (I do like a challenge ) but we have to weigh everything up.
On the plus side, you are now prescribed NDT on the NHS.
On the minus side you've developed an enlarged heart. Can this be proved to be linked to your having to stop thyroid replacement hormone for a time, then restarting with Levo at a low dose?
You were also unable to work for a year so there is possibly some loss of income to consider if your benefits were lower than your income (which is usual).
What do you hope to achieve with furthering your complaint?
The NHS are very good at procrastination, have lots of money to spend on clever lawyers that will rip Joe Public to shreds. If you wanted to go down the lawyer route, to find one to fight your case who is equal to the NHS lawyer, you will probably need very deep pockets, and there's probably not many willing to take on medical complaints.
Is it worth the stress and hassle? The probable outcome is that you wont get anywhere other than earn a note on your record of being a difficult patient of some description.
Just as an aside, and worth pointing out if you wish to be picky ( ) at the bottom of the page they've linked to the NICE CKS article on HypERthyroidism
I've only just got onto NDT and it's a trial so I've still to get my levels but I'm definitely feeling better than I have all year. I've not been off work all year, I was only off 3 weeks but I did lose money having to get ssp instead of my wage. The main thing is that I didn't want anyone else to suffer like that.
I'm waiting for results from an echocardiogram on Monday. I doubt they would tell me if it's linked.
What a journey Pinebunny. What upsets me most is the idea that it is okay to take someone who is hypothyroid off all meds until they become ill to start a new treatment from a baseline.
It sums up the attitude that it ‘isn’t so bad’ and ignores the debilitating, life-destroying symptoms, not to mention the long term damage, physical and mental. I have never felt so ill in my life as I did when diagnosed; I could not understand what was happening to me and thought my quality of life was going to be reduced to nothing.
They would never ask a diabetic to come off meds until they go into a coma; a heart patient to come off meds until they had a heart attack or a heroin addict to go cold turkey to prove they are addicted. It’s shameful, unforgivable and sadistic. But obviously okay according to the ombudsman. 🤸🏿♀️
A severely disabled friend of mine, disabled from only a few months old, who is extremely intelligent, inherently and actively pro-rights, and willing to fight that cause, nevertheless takes the view that you should carefully chose which battle to fight, and when to fight it. She sits on benefits panels as "the disabled person", and has wide experience of when fighting, or fighting the wrong cause, or fighting when there's actually no cause to fight, has led many people down rabbit holes. That said, if it had been mine, I'm not sure I would have taken your case to the Ombudsman service, but would have asked for a second opinion and/or evidence of the appropriateness of going 6 weeks without meds to reach a baseline, or simply declined their invitation to do so. It's important to remember that it does seem to have common, or some, currency because we see it reported here, so in medical terms it is not (universally at least) considered wrong, or ill-advised, or dangerous per se. That would indicate that you might find it difficult to prove your case that it was wrong to suggest it to you, that there was evidence it would injure you, as a general rule. On the other hand, and on the whole, your surgery seems to have been very responsive - they listened to and acted on your request for a higher start dose (you don't mention your age or pre-complaint cardiac status that might indicate either 25 mcg or 50 mcg being the more appropriate dose); they referred you to an Endo when you expressed your dissatisfaction with them; and against all the odds in the current climate, you have been prescribed an NDT. Unless you have evidence that your enlarged heart is a direct result of being without thyroid meds for 6 weeks (correlation does not prove causation), that might not be easy to argue. So weighing the balance, that you've got the meds you want, at a time when others haven't or worse, are having them withdrawn even in light of genetic testing indicating their need for other than T4; against the stress of fighting and may be even then, losing; I'd be inclined to go with the positives.
I don’t think Pinebunny did it for their own cause.
I think they did it in the hope that if there was a small chance the ombudsman might have found the total withdraw of meds unethical as a deliberate action to make someone unwell, (especially when with thyroid meds it can often take a long time to stabilise and find a dose that restores health), then it might stop this from happening to others. And we know it has happened to others on here.
Pinebunny had little to gain from such a ruling being back on NDT (or a trial at least.)
Personally, I’m glad to see people registering a protest if they think something is wrong, especially if they don’t want anyone else to suffer the same fate - even if it may not get anywhere. Sitting on our hands will get us nowhere in the situation we find ourselves.
I only take T4. But I will always protest that those who need T3 or NDT should be able to have it. Doesn’t matter if I feel okay - I know how bad this illness makes you feel and I don’t want anyone feeling that way because they are denied treatment options or treated unfairly by perverse guidelines that seem to advocate removing crucial medication and letting people get ill. 🤸🏿♀️😱
I made/make no judgment as to whether the OP made the complaint for themselves, for others, or to benefit both. It is irrelevant to my post. I didn't say the OP was wrong, I said if it were my case, I might do differently. I was expressing a different opinion since the OP has invited comments by the fact of posting here; and different opinions can help us consider different perspectives, or even help reaffirm that what we did was the right thing to do for us, and anything else in between. The meds weren't withdrawn, the OP was asked to stop taking them temporarily; but I'd be interested in any evidence you have to substantiate your assertion that the Drs did so with the deliberate intent to make a patient unwell. Would you accuse any one of the number of patients who decide for themselves to stop taking their meds, that they too, do so with the deliberate intent of making themselves unwell? As reported by the OP, the Drs wanted to first ensure that Levothyroxine was/wasn't the better option; the OP has not said that that they refused carte blanche to consider alternatives, only that Levo was the first option. I don't know to what 'perverse guidelines' you refer, that advocate removal of medicine; bearing in mind that it was a temporary time-limited abstinence, not removal. However I made no implied nor actual reference to the principle of people being denied the meds they need, as that too, was irrelevant to my post. Having had my own T3 summarily withdrawn after 9 years, I have first hand experience of the direct impact of that; but that wasn't the OP's core expressed concern as I read it, which was being asked to go 6 weeks without meds. As they were subsequently prescribed an NDT neither might it be said to be their ongoing concern.
Would you accuse any one of the number of patients who decide for themselves to stop taking their meds, that they too, do so with the deliberate intent of making themselves unwell?
Not sure that's a valid argument. Patients that decide to stop their 'meds', by and large, do it out of ignorance. Doctors are supposed to know better.
Not a criticism, but that did jar on me a bit. I think the whole point of Pinebunny's complaint is doctor ignorance. They should know better. They should realise the effect that stopping thyroid hormone for six weeks would have on the patient. But, I too, would very much like to see their justification for inflicting that on so many patients. Are they really so totally ignorant? Or are they in some way - maybe unconsciously - trying to punish the patient for daring to self-treat? Because it's usually people that have been self-treating that get told/requested to stop their hormone for six weeks - or even longer!
Well done for fighting your corner Pinebunny, the reply you received goes to show how limited the "guidelines" are and how rigidly they are applied by doctors who mainly don't understand how to treat some thyroid problems. Having worked in a government organisation with parallels to the NHS, where things were done for the greater good rather than for any individual, and where the public were disregarded but at the same time nothing could be done which might look bad under public scrutiny, I have first hand knowledge of both writing and receiving such letters.
I suffered for years because the NHS didn't recognise what was wrong with me, a private doctor gave me back my life, then an NHS endocrinologist tried to ruin it again. I do hope that if your future treatment isn't good enough you'll continue to fight, and, if necessary ditch the NHS. I eventually found another wonderful private doctor and am happy with his treatment, but I'll now always be wary of these organisations which are supposed to help us, but have such a high opinion of themselves that they end up just trying to cover themselves when challenged in any way.
I did think about what was said and its true I am lucky to have an endo who will work with me now, but initially when they refused to help until I had jumped through their hoops and I got increasingly ill, I found it hard to fight through the brain fog to question their advice. My face was swollen and I was on so much pain in my shins that I could hardly walk. I put 3 stone on very quickly. At the doctors, I burst into tears because I was so cold and my coat wouldn't fasten and my boots didn't fit.
I couldn't sleep for the cold and the pain and our planned holiday was ruined as I was sat crying wrapped in a duvet because I was so cold.
I just think now that there was no reason to make me go through this.
My first blood test was fine because I used 4 grains NDT and I was correct that it solved my problem. I could have been prescribed an equivalent dose.
I do believe it was ignorance and really hope it wasn't a punishment.
Either way I really didn't want anyone else denied their meds, through ignorance or malice. It's just so awful.
I've had to buy a whole new wardrobe for work two dress sizes bigger and it's so depressing being this huge and have people asking me if I'm on steroids ☹
Oh Pinebunny, I know, I still have two different wardrobes of clothes, just in case, our heating is set at 23.5, and I understand completely about crying at the doctors. I once spent a lunch hour there in tears and, to her credit, my GP missed her lunch and sat with me, curious thing is though that she guessed what was wrong but because she couldn't prove it by blood tests she didn't do anything for years. Then when her choice of private doctor diagnosed me, that same GP refused to treat me, even when the private doctor died!
There was no reason at all for you to be treated as you were. I honestly don't know what the answer is. If they all understood how to treat our varying thyroid problems it would be fine, but as they don't we can just fight as well as we're able to get what we need, or, if they begin to do us harm with lack of treatment, then treat ourselves. I will say though that I really doubt you were treated as you were out of malice, or as a punishment. I don't have a very high opinion of some doctors, but I don't think they would behave that badly. It's far more likely they it was pure ignorance and blinkered outlook. The endo who wanted me to keep reducing my NDT did so because he genuinely thought my suppressed TSH was dangerous and going to lead to a stroke. He kept saying his job was to treat but also to do no harm. He would not believe anything I said to the contrary. I gave him the benefit of the doubt in the end, and moved on to a more knowledgeable one!
I really do hope that you continue to get the treatment you need and that your doctors learn from you. If they do then others won't be treated as badly as you have been. Best of luck to you
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) but we have to weigh everything up.
Which Chemists in UK can supply an 'on going' supply of (difficult to source) NDT please. ?
T4/T3
How do I get my NDT on the NHS
