I've been successfully self-medicating with T4 and T3 or NDT, without GP's knowledge, since 2016. For the 30 years before that I could not get diagnosed for hypothyroidism because I am borderline central hypothyroid and my TSH never got high enough for the NHS diagnosis criteria.
I am now in my 70's and I am still well and healthy, but I am starting to worry about what might happen if I were hospitalised or had to go into a care home. In order to get any thyroid meds supplied in those situations I would need to be registered as hypothyroid with the NHS.
If I go to my GP now and he gives me a blood test, my TSH will show suppressed near zero because I take around 20 mcg T3 per day ( and 75 mcg T4). What I don't need is for him to freak out and insist that I am hyperthyroid because of my TSH reading.
Another avenue might be to somehow find a private specialist with enough understanding to give me a formal diagnosis and write to my GP informing him that I am hypothyroid.
In each case I don't need a prescription because I have a trusted online supplier. I simply need the NHS to have it on record that in case I am in their care I will need thyroid hormone. If I could get my need for T3 recorded as well as T4 it would be ideal, but is the state of play with T3 still no-go with the NHS?
I am interested to know how other members have navigated this situation and any advice you might have?
Many thanks,
June
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June25
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Good question June25 and it’s one I’ve thought about asking.
My thinking is that a GP is constrained by guidelines/CQC so I would imagine that an open-minded private endo/GP would be your best bet. But I’m intrigued to see what others suggest.
Thanks. I'm not sure that if you live in the UK there are any good answers to my question. An open-minded private endo/GP might be best, I agree, if there is such a thing. I'm not in the mood, however, to just go along and pay their exorbitant fee, then be turned away empty handed. I'd have to have some indication I'd be successful before going through the whole expensive rigmarole.
Also what comes to mind though is a power of attorney agreement with someone you trust. This would be someone on the spot to help you. No private endo is going to be where you are, if you are in hospital or shipped off to a care home and any GP I think in this case (as it stands at present) will want to ‘follow orders’ and reduce or remove your medication altogether.
I think this is becoming increasingly important whilst some very powerful ‘experts’ are following the lead from other countries. My very good friend in the USA is watching her mother fade away with all sorts of infections and massive antibiotic treatments and interventions. This has all come about by some idiot deciding to follow insane research that implies ‘old people’ no longer need thyroid medication.
Genocide of the elderly by removal of thyroid medication. It’s not even euthanasia, it’s murder.
I had a lot of issues with my later mother and doctors who kept wanting to prolong her suffering, even though mum stated on numerous occasions she had had enough and wanted to die peacefully. She was in a home.
Because we didnt have POA and anyway mum couldnt consent to it due to cognitive decline, we were helpless. Even though the doctors continuously phoned me and I kept explaining her wishes they ignored them.
I remember getting really shirty one time and saying, why ate you asking me for my opinion when you're going to ignore it anyway? It felt like it was more about protecting their reputation, not my mum's best interests.
In the end my mum hastened her own demise by refusing, food, water and medication. It should never have got to that situation however.
I am in the process of making an advanced directive as my mum's experience and that of other people has really alarmed me. I think these sorts of scenarios are something we need to think about, no matter how uncomfortable they make us.
Having cared for my mother through her dementia I know what you are talking about. My mother was in more danger from the medical staff than from her disease. Any sane person who has witnessed what happens to those in care should be alarmed. I asked my solicitor to draw up a directive for me but when I read it I tore it up. It was more like a carte blanche for doctors which protected them no matter what they might do to me. I hope that the directive you create serves to protect you, not your doctors.
By the way, you have inadvertently given me my solution of last resort - refuse food, water and medication. It should never come to that - you are so right- but I think it does, much more than we hear about. They don't write it on the death certificate when the fault could be theirs. I'm so sorry your mum had to go through that.
I have already done all that. Honestly I thought I had it sewn up nicely. Now, after dealing with the utter fiasco of hypothyroid treatment, I can see it’s not worth bothering with. Doctors really don’t have the same vision as us.
As I replied to Beads, I don't have a medical power of attorney and there are no candidates for the job. I'm so sorry to hear about your friend and her mother. This confirms what I already suspected, which is that once you are old and need care, heaven help you! I've already seen how it goes while caring for my mother who had dementia. An old friend of mine who lived in Canada got Alzheimers and I visited him in his care home there. It was a really good place. I haven't come across any place here that comes close to being as civilized.
Whilst I believe that all adults who have somebody suitable that they trust should have LPAs in place (both for health and finance), and for some a Living Will, DNR etc might be appropriate, none of these solves the OP's predicament. Even as somebody's attorney, the NHS won't suddenly give a medication on the attorney's say-so if that medication is not already on the repeat prescription list for the patient. The NHS would have to go through their usual diagnostic procedures and decide based on NICE guidelines what to then do. Unfortunately, even if the medication were on the repeat prescription list already, it's possible that a doctor might withdraw it at any time. The endo that I saw recently for adrenal insufficiency put a throw-away line in the subsequent letter to my GP recommending that my levothyroxine be stopped, even though it has been working for me (NDT in the past too) for 12 years. Unfortunately, the GP instantly removed it from my repeat prescription list and won't add it back unless the endo says to. The endo is not answering calls, emails etc. I am going to find myself a new endo asap, as I believe the current one's recommendations are unsound (potentially life-threateningly dangerous for the adrenal insufficiency), so will try to get back on levothyroxine before my current supply runs out. "Do no harm" seems to no longer apply even when the patient is able to advocate for themselves, so we cannot trust doctors to "Do no harm" when the patient is no longer able to advocate for themselves. When there are medications or supplements being used that were not prescribed previously, it really requires somebody to sneak them in to the patient until such time as a suitable diagnosis is made. Without such a person...
Yes I was being overly polite in my ‘Power of Attorney’ suggestion and my meaning was missed. A good friend can do this BUT it nearly always mean that one person is left without this support. I worked as a counsellor for a while and one of the things they do is to undertake to destroy each others files, if and when it’s ‘time’. We need a similar arrangement for our medication.
Do no Harm. To whom? It’s all sewed up between doctors and their organisations. Once a highly trusted profession it really has lost the plot. I know we see it clearly with our illness but there are more and more stories reaching the press all the time about how patients rights are being breached, all in the ‘in the patient’s interest’. One wonders where it will all end. All these little millennials and Generation Zs, what can we expect of them when they have been educated not to actually do any thinking.
Thank you for this very informative post. I thought I was beyond being shocked but I am aghast at your story of having your levo stopped in such a cavalier fashion. I was not even aiming to get on my GP's repeat prescription list for Levo but you are right, even that is precarious. My GP cuts my non-thyroid meds often. I never know when a prescription will be refused 'pending review'. You have made me realise that I'm better off getting my meds online. My supplier has not let me down so far. It's not the answer I was hoping for but if this is the reality then it's good to know that remaining independent of the medical establishment is the only viable option.
I do hope you get your Levo supply sorted out, and the adrenal insufficiency.
yes utterly daft research by Newcastle Uni consultant I read yesterday that very elderly didn’t seem to deteriorate after 6 months of thyroid meds removed/ lowered! Would they do it to their own Mum/ granny?
If the "elderly" are anything like my mother (and my father when he was still alive), they say they are "fine" whenever asked by a health professional. I have literally just got back from my mother's place as she has had an ambulance out today for a suspected heart attack. When asked how she feels, the answer was still "fine", even though she had been complaining of chest and shoulder pains before the ambulance arrived.
Well arguably ‘some’ seem to have strongly sociopathic tendencies, so I am not even sure they would pass muster on that test. In fact I am very wary nowadays, particularly of ‘people on a mission’. So many ‘prominent’ endos seem to me to be on a mission. Money saving Hah! Empire building. Yeh! Etc etc. Even GPs and ICBs who are on a mission to save money, I find absolutely untrustworthy. They clearly don’t have the patient’s wellbeing in mind. The position is so anti patient and off course sheer torpor is also a factor.
There really is something of the Third Reich about healthcare.
I've done a ton of blood tests over the years and I don't have antibodies. My thyroid is not atrophied either so I don't need an ultrasound. Thanks for your reply but how do you think it helps me with my question?
As arTistapple says, you need a power of attorney set up. In actual fact we all need that! Then you talk the the attorney, give them all the details of your medication and where you get it. They can then source it for you if needed. However.
I’m an attorney for my aunt. She was diagnosed with dementia a couple of years ago. We sort the carers out, I can ring her doctor, deal with her financial affairs. She had a fall and spent the day at the local hospital, as I’m a hundred miles away I got her records sent to me, with proof that I was allowed them. So I can see what’s happening and as far as her docs are concerned can request things being done.
A couple of Christmases ago she needed somewhere to stay as the care agency weren’t working over the Christmas period. I had my kidney removed 10 days before Christmas, so we weren’t sure if I’d be up to hosting her. So we had a look around and had her stay in a local care home. We brought her pill pots with her, following generic advice on here, and because prior to diagnosis she’d basically forget to eat, we had her taking vitamin D and a B complex ( we’d got her doc to do a blood test, which came back low D and “the only other thing I (the doc) am concerned about is to do with drinking too much”, as she doesn’t eat meat and doesn’t drink, a bit of internet research suggested low B12). The care home said they couldn’t give her the vitamins, they could only give drugs/supplements if prescribed by her doctor, and that we’d need communication between her doctor and the care home registered GP. Okay, enough waffling, onto the salient point.
So, while your PoA will be able to help you access medication, I’m not sure how helpful that is if you are in a care home. Maybe you do need to ’bite the bullet’ and have a chat with your GP, get something official in place.
And back to the original question, my GP prescribes T4, I take T3 sourced from Roseway labs prescribing service. Yes, blood test at the beginning of the year showed low TSH, mid range T4, midrange T3. When GP said about TSH being low and to lower my dose, I asked which one (knowing full well neither needed lowering). I admitted I was taking T3, sort of gave the impression that I was seeing (as in face to face) a private Endo, that they were happy with my results. And she gave in.
Maybe that’s your way in, that you’re seeing a private Endo, who’s supplying you, get it written in your notes, show them blood tests, symptom relief. Explain that you’re happy to continue doing so but you’d like it documented in case your scenarios above happen.
I don't have a trusted person to be my power of attorney. Unfortunately, all the possible candidates died before me. My solicitor will do the financial POA but not the medical POA. So I will have to handle this myself. I cared for my mother through her dementia so I have some idea of what a big job it is. I am sorry that you have that to deal with.
Your idea about pretending to have a private Endo is very helpful. I worry, however, that my GP would want a confirmation letter from them. I'm not sure I could find a private Endo or GP to go along with what I need even if I looked. Doctors are scared of getting struck off if they depart even a little from the BMC guidelines. Maybe it could work though if my GP only has to write it up in my notes and doesn't have to take any other action. Trouble is, I don't think that would wash with a hospital or care home when I might really need it. I'm starting to think I better not need care in my old age.
consider seeing a thyroid specialist endocrinologist
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who do prescribe T3
if possible choose an endocrinologist to see privately initially and who also does NHS consultations
I meant that my solicitor will not consent to act as my medical POA herself. She has no problem drawing up the papers for a medical POA, I just don't have a volunteer to take the job on. She will however act as my financial POA in the event that I become mentally unable to do it. Sorry, I should have expressed that more clearly.
Oh I see! I hadn't twigged that at all. It would never have occurred to me to suggest a solicitor, but her agreement to be a financial POA is disturbing under the circumstances.
Why do you find it disturbing for a solicitor to be a financial POA? It is normal practice for a solicitor to be the executor of an estate so why not a POA. My solicitor is a partner with a large firm which has a good reputation. I trust her far more than I trust the NHS to carry out my wishes with integrity.
I'm not sure if the smile emoji is tongue-in-cheek or not.
Anyhow, my situation is that I have no choice but to rely on my solicitor. Everybody whom I might have trusted to take care of my affairs has died. I presume that you still have such a person, which is why you can afford to have trust issues.
It was true, not tongue-in-cheek. I still have my husband. I am hoping that I die first because he would cope far better without me than I would without him.
Thanks for your reply but your situation is not the same as mine. Your doctor knows you need thyroid hormone and accepts that, mine does not. If you were in care you wouldn't get NDT but you would still get Levo and T3. I would get nothing.
A year or so back I asked my surgery to make sure that my T4 and T3 were included in my list of medication (I can't remember why). Their reply was that if I didn't get it from them they didn't want to know. Mine is legal as I get it from a private doctor who can give me prescriptions.
So this can be a problem for any of us who see private doctors. I do occasionally remember to send an update to my GP to say what my current brands etc are. But I've no idea if it gets further than that.
I would also be lost without my supplements and without them knowing what foods I'm sensitive to. In hospital recently my supplements were taken away and returned to me when I was discharged. That's no use - I take supplements recommended by a nutritionist, but the hospital wouldn't know that. (note to self - it's time I had them checked again).
The hospital were very helpful about my food intolerances, as I am sensitive to wheat, oats and potatoes. There was a comment when I ordered a stew which came with mashed potatoes, but I pointed out that I could avoid the potatoes as they were separate.
My levo and lio were a bit more of a problem. Fortunately I take a photo of my prescriptions before sending them off to the supplier. This proved to the hospital that I take levo and lio. My daughter hadn't found all my meds when she sent me into hospital - she doesn't know where I keep them - why should she? When I went in to hospital I was assured that they had Teva - I never saw any. I kept asking to speak to the pharmacist so that I could get meds. After 2 or 3 days the meds trolley produced levo, wrong brand, about half my usual amount and wrong time of day, but better than nothing. Nobody seemed to know that people react to different brands.
To top it all, on my discharge letter they had the audacity to say 'No regular medication was amended or discontinued during this episode of care'. Wasn't it?
Maybe we need to keep a list of current medication and update it as needed and print it out. We can't rely on the NHS to get it right.
Oh my goodness, this is the kind of horror story that scares the pants off me. They took your supplements away! I have visions of struggling to hang on to my meds in my bed and being set upon by the nursing staff while too sick to resist.
It is very useful information to know that meds not on the GP repeat prescription list will not be supplied even if the GP is informed. I would also have an issue with the wrong brand of Levo. The best news about your story is that you were discharged back to your independent life to take care of your own needs. Your story confirms my worst fears - but I'm glad to know now before I have to find out the hard way. Thank you for your reply.
Fair enough if it's a short stay in hospital. However I suspect that once you are under their control, like in a care home setting, they won't give a damn if you get what you are accustomed to or not.
Nothing is guaranteed especially with the deteriorating NHS. And, importantly, getting any specific brands are not honoured in hospitals in an emergency if at all.
I think the best anyone who is self treating can hope for is a recognised diagnosis on their record with the appropriate ICD code. Some GPs are better than others at actually flagging the diagnosis on thier internal systems. For example, mine didn’t show on my record for several months.
That's very good advice. Many thanks. It might be worth a try, although I'm not sure I could get diagnosed any easier now than in the previous 30 years. My TSH never goes high enough for diagnosis, and so long as doctors don't look past that criterion they won't diagnose me.
At least I understand that now, which I didn't before we had the internet and forums like this, and the possibilities of self-testing and treating. I might be able to argue my case with an endo these days for central hypothyroidism, which is what I have.
Here’s the thing… if you lived and was diagnosed in a country such as the USA, and moved to the UK, all they’d do here (not accounting for exceptions) is added it to your record and support prescribing (not accounting for nuances in T3 and NDT prescribing).
Daft isn’t it?!
But if the diagnosis is added to your record with a note of self managed/self treated, then that’s a start. I have that against one of my diagnosis (not thyroid related).
I did tell a GP that I self-treat my thyroid about ten years ago. I didn't make a big fanfare about it, just dropped it into the conversation, and she didn't say much in response. It has never been mentioned since, as far as I can recall.
The only official thyroid diagnosis I have is "subclinical hypothyroidism". Since then I have also been diagnosed via MRI with a completely flat pituitary. This was discovered by accident - the MRI was being given to see if I had had a stroke (I hadn't). A flattened pituitary is unlikely to work as well as a normal pituitary, and I suspect mine struggles to produce enough TSH, so I have diagnosed myself with secondary hypothyroidism.
For me, I doubt that telling a doctor about my self-treatment makes much difference in terms of how I am treated generally. I know that I have various flags on my records that say nasty things about me, and I know what one of those things is thanks to a stupid A&E nurse who thought it would be fun to wind me up. She was out of luck on the day - the problem I was in A&E for was visible so couldn't be denied.
My condition is a lot like yours in that my TSH stays too low to accurately reflect that I am hypo. Your GP's reaction is interesting and reflects what others have said - they are not interested unless it's on the repeat prescription list. Hopefully your visit to A&E was temporary. How sad to have to deal with a sadistic nurse while there. It's the possibility of extended or permanent stays in care that I am concerned about - and after reading the responses from the good people here I am no less concerned.
June25 I would like to thank you for bringing up this topic. I have often wondered along similar lines and this issue has come up on the Forum before. Somehow your post has brought about a more informative (or maybe just the right time for me to hear it) and fuller exchange of experience. Up until now it’s been pretty scary considering this stuff, on one’s own. However for me, following your honest enquiry and everybody’s input, it’s been tremendously useful.
It’s not that I agree in any way, that our society (and medicine in particular) should act in such a shocking and outrageous manner towards us. Unfortunately that is the status quo. However I have found this honest assessment from everyone who has replied, to be excellent ‘teamwork’. It’s been a wonderful ‘airing’ of these issues for a group of individuals separated by geography and not being part of the 80% who apparently do well on Levothyroxine monotherapy.
Well done everyone for just one of the excellent discussions on the Forum.
arTistapple, I couldn't agree more. The responses to my question have exceeded my expectations in letting me know the real situation out there, and also several possibilities that I might try. It does take courage to tackle this subject and the wonderful forum members who responded have it in spades. Thank you all.
Following the discussion, I think I will try to get a formal diagnosis again. It's been a while since my last refusal by GP, but this time I'll pick a private consultant and carefully screen them first. The list of doctors and endos from thyroiduk has been most helpful.
Even if I succeed in getting the diagnosis, I have no illusions that it will be of use in persuading the nursing staff of a hospital or care home to give me the meds I need. This thread has done a great job in explaining that to me. Still, it would be better than nothing.
I'm not going to rush into it, but if I have an update on my progress I'll come back on and let you know.
Yes! So often, when we are ready to hear/deal with a situation, we do finally have what we need to come to terms with the reality. As I said this does come up on the Forum from time to time. Maybe I have not been ready to hear/deal with it myself before now. So again I think you have put up a brave post and it’s certainly helped me.
I think also you are right about the official diagnosis. Not that you need it to deal with your present situation - sounds like you are doing a sterling job with that. It’s preparation for the future and who knows you might actually find the correct kind of support.
I hope you do. Life would be so much easier if we could find that.
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