Just a question regarding hospital stays and taking unprescribed ndt. I am probably going to be in hospital soon and am wondering what the heck to do about my thyroid s. I ended up in A&E with chest pains and was put on a ward where they took my antibiotics off me and put them in a locked cupboard. I'd only been prescribed them the day before and they didn't give me any in the time I was there. They didn't ask about my thyroid meds or what I was taking although it is on my notes that I have a problem with Levothyroxine. The last time I tried adding a small amount of Levothyroxine 25mcgs my heart went seriously out of kilter with a rate of 200bpm and it wouldn't slow down.
The last thing I want is them taking my medication away and giving me synthetics especially as its my heart that's causing me problems.
Has anyone been in this position that can give me some advice please.
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It's everyone's nightmare that is on NDT so you aren't alone. I did read that radd took some in her washbag as well as giving some to the staff as you are required to do. Seems a great solution to me to overcome what might otherwise become a real problem.
Thanks for the reply. Its a real worry as I have been on ndt's for 21 years now and still remember that horrible experience like it was yesterday! I used to get my nature-throid on nhs prescription but they stopped it as too expensive and of course it became unavailable anyway. However, I will not take Levothyroxine ever again.
You have all my empathy - have been on NDT for just over 30 years and my absolute favourite was Nature Thyroid which suited me so well and wasn't so expensive as Armour - felt devastated when it was withdrawn from sale. Have always had to pay for it but it became like a second mortgage - something that had to be paid for in order to keep me well - not so easy now when retired but don't think anything will change in my life time. Stay strong and Stay Well!
I've never been in that position - things are different in France - but what happens if you refuse to hand over your medication? That doesn't sound legal to me.
I have no idea to be honest. However they are my property as I bought them so I don't think they could prevent me from having access to them. I wasn't impressed that they didn't give me my antibiotics though until I was discharged!
No, that sounds like negligence! But, I would want more than access, I would want them in my possession. I wouldn't hand them over like a good little girl giving her sweeties to the teacher until playtime! (The only time I ever did that, one of the big boys ate them! Never again!)
Talk about infantilising patients. If they're adult enough to manage their own medication at home, they're adult enough to do it everywhere else.
No exactly so - it's required that you do hand over your medication and for a good reason in that doctors need to know what you are taking. However, people have related that thyroid meds have been given to them at wrong times (like straight after breakfast) and other times which go against what we've been given to believe isn't right for the best absorption and some even having it withheld because it isn't a licenced drug in the UK. By handing them in we are doing everything that is legal but if they aren't dispensed to us in accordance to our wishes, can we blamed for doing what is right for ourselves in taking a hoarded stash that we have somewhere else?
I realise France doesn't even accept NDT as being legal and it seems to be going that way in the UK also but it's so flaming wrong when it's been proven to help so many.
Totally agree with you. NDT is illegal in France (I wrote a post about it some time ago) and doctors can be prosecuted for prescribing it - not that many would because they have no idea what it is and consider it 'filthy stuff'! (But will happily eat a pork chop!)
And one wouldn't mind so much if they knew how you should take it. When I was hospitalised on levo only, they told me not to bring my own, it would be provided. Oh, yes! With breakfast! A large bowl of milky coffee! 🤣🤣🤣
When hospitalised on T3 mono-therapy. I told them I had it but kept it in my bag. No-one objected.
Exactly - I'm not someone who wants to flout the rules but I've had enough of doctors telling me that I've been overmedicating for years; to now come off of thyroid meds completely to see what is what and all the other things that they don't understand but is clearly my fault. ~Sorry, will have to leave it here as I'm exhausted - sure you will understand😊
how utterly disgusting, the profession th ecaring profession and we cant keep well with what we know, its all control and opposition, they need to be educated, but we know th e drill gg, i also got ndt on prescripton frommy adorable endo years ago, but he left as he couldnt treat his patients as he wanted to... i would stuff those ndts in my bra or knickers even! when the ndt wa s taken away thru cost so was my t3, and i was told it was dangerous!
This makes me think I will not hand them over. What gets me is that there was people on the ward with major health issues yet they were still going outside for a cigarette every couple of hours. I'm taking tablets which are beneficial for my health yet am made to feel like I'm a trouble maker or a criminal!
I handed over my Thyroid S when I had a hip replacement a year or so ago. I was adamant about it being taken away from food etc. That fell on deaf ears and one night I asked the nurse for my dose at about 4am when she helped me to the loo. She was very reluctant but caved in and tried to insist I took the laxative alongside it! I like the idea of a supply in a wash bag as well as handing some over which I will do if it happens to me again. Good luck
I had the same problem in hospital. My T3 was given to me with my cornflakes all 3 doses at once, along with several other medicines and a huge dollop of Gaviscon. The problem was that they didn’t always tell me what they were giving me and sometimes just left it by my bed while I was in the toilet so I didn’t know whether I would be overdosing if I took my secret stash. They withheld a dose before I had a procedure as it would be dangerous. I was fuming and the team doing the procedure agreed with me that I would have only benefited from it.
It seems to be standard procedure in the UK, but they are supposed to give your meds to you. However, with staffing problems and lack of understanding, that doesn't always happen when it's needed.
Yes, I understand that, doesn't help though, does it. Especially where thyroid hormones are concerned. They are not drugs so should be left in the care of the patient to continue managing their disease as only they know how.
Yes, I did have some spare Armour pills in my wash bag, and would urge you to do the same.
I medicate 1 grain NDT + 50mcg Levothyroxine, and had handed both meds over to the nurse which she then locked up. Except they then decided I wasn’t allowed my NDT as it wasn’t in a blister pack! 🤷♀️
I explained giving me only 50mcg Levo was less than half my usual dose and I had endo letters and prescriptions detailed on my GP surgery records. They said they would ring my GP surgery to check but of course nobody ever got around to it. I was only in for 4 days and just sneaked my NDT pills when no one was looking.
I have read of forum members refusing to hand over their meds but I would prefer my way just for a quiet life.
Thanks for the reply. I will keep some for me to dose because they won't have Thyroid S so what are they going to do about my thyroid meds? Its on my records saying allergic to thyroxine...don't think I'm allergic but it certainly does not agree with me and I will not take anything but my ndt. I also split my dose so 1 grain before breakfast and 1/2 grain mid afternoon. Its so worrying when I know there is probably going to be hassle about it, which is really the last thing I need if I have to be hospitalised again.
I wouldn’t worry about thyroid med concerns. If they offer you thyroxine and you refuse I doubt they will follow up as they are so busy.
I suspect as you aren’t medicating thyroxine, you won’t be offered any anyway, and them generally not knowing what NDT is, they will assume it’s a non-essential supplement (as my nurses did).
We shouldn’t need to take our thyroid meds in secret when in hospital but I recommend you do and don’t worry about 😊.
The nurses assumed my NDT was just a supplement too radd, so I just let them go on thinking that!
Luckily my Endo is at the same Hospital and is aware of what I take. He also thinks my blood levels are stable and good, and is happy to just monitor me.
If you do have to hand over your NDT, make sure there aren’t too many in the bottle. Hopefully you’ll get them back but I certainly wouldn't want to risk losing them—not at the the price I have to pay for them.
Like you, I would—and likely will someday—be in this position and it terrifies me. I think I’d go down the pills in a wash bag route. And maybe a few more in a spare sock, just in case.
As already said, it’s the infantilising that’s utterly infuriating.
My partner's insulin has to be kept refrigerated so he has no choice but to give them up when he is admitted. The last time, it was a new prescription but when he left, they gave him another new prescription to come home! I think they just dispose of patient's medicine when they're discharged.
hope it goes well for you 🤗 but this from the coal face.
Daughter in law works on a ward where almost all patients are hypothyroid, she’s absolutely appalled that all meds are given at breakfast time, close to a meal, all meds for that round together, in one go, supplements as well (some are on megadoses of supplements as it’s a liver/gastro ward), no care taken for lactose free, many patients develop new gastro symptoms while on the ward as a result. Many are too poorly to know any different. She’s had her eyes opened since coming to live with us but the ward and docs operate in such a robotic manner that nothing changes.
Washbag, visitors, snack box, handbag… water bottle, if you have capacity I’d definitely look after yourself rather than accept this standard of’care’. I’m horrified.
Thank you. I will go well prepared as unfortunately we live quite away from the hospital and my family members can't drive so have to rely on taxis which of course are very expensive. The food was barely edible and no effort made for people with dietary restrictions. I just hope I don't need to have an operation. Fingers toes and everything else crossed!
Argh bless you, we need a thyroid Uk visitor network, where are you in the country? I’d take a turn bringing you a meal to your specs if it was near. 🙏🌱
I'm trialling T3 atm and I have to chop the pills into quarters because the small ones are too expensive to prescribe on NHS. Can't imagine any ward staff having time, patience (or capability) to chop it up every morning even if they didn't take it away/agreed to let me have it back. It's terrifying that such a vital resource might be disallowed at such a crucial time.
I read on here once that someone's husband died in ITU partially because he hadn't had any T3 for over a week or something similar. We all live in dread.
I told new doctor the other day I’m not be managed by someone who knows less than me with a test for a pituitary hormone that bears no relation to my thyroid hormone status. I’ve read backwards to where all the guff emanated from. It is unscientific and sloppy. Couple that with Big Pharma influence we have been poorly served for decades.
I am in hospital a lot. I take my NDT with me and tell them I am going to take it and put it on my notes. They don’t like it but really what else are you suppose to do.
I have been in hospital in and out and admitted a lot last year (and over Christmas) with chest pain. Turns out it is pericardial effusion. Which is inflammation of the heart and fluid round the heart. Still got it now and had it for 9 months and on colchicine which is a horrible drug. I do wonder whether it is the NDT causing it as I get extremely high HR due to pots and the NDT gives me high Hr but I can’t take Levo.
I had pericarditis last summer, because I cant take ibuprofen which is the normal treatment, I was given a few weeks of steroid tablets which worked really well. I was also precribed Colchicine, but never took it as the side effects looked horrible.
Could you ask for an alternative? I dont take NDT but I have read hypo patients seem to be at greater risk of getting pleural and pericardial infusions. I've now had both. I had a small pleural effusion about 4 years ago but it cleared by itself.
This is the problem. Colchicine is awful feel like I am being poisoned. I have been on it over 2 months. I can’t take other anti infl. Steroids make my HR high with the pots. Saw cardiology and he said it’s chronic pericardial effusion now. And basically just got to live with it. Coming off NDT is not an option for me. I can not take levothyroxine and it makes me really unwell & can not function on it. I have made many attempts to go and levo with added t3 but after 6-9 months I end up back on NDT because I feel so terrible.
You need to be open and honest about what you are taking and what you can’t take and why to allow the doctors to be able to assess you fully and make informed decisions about your condition and treatment.
If you believe you should be taking something like antibiotics, but it’s not being administered, ask why, there may well be a sound clinical reason for not taking it at that time.
But doctors dont make informed decisions, certainly about non licenced medications like NDT, which many have never heard of.
The NHS believes in Levothyroxine and nothing else, and even if you got a sympathetic doctor, their hands are tied by the system. They aren't allowed to deviate from the Levo mantra.
Many forum members have tried Levo, in fact I'm sure everyone has at some point, but for some it simply doesn't work. I can fully understand the dilemma facing people who are using thyroid meds either from private prescription or self sourcing, when facing hospital inpatient time.
In the context of trying to sort someone’s cardiac issue they will use the information of what affect T4 has on their heart rate and that they use NDT, in the same way that they will use the fact that someone may use street drugs into consideration when treating them for a condition. The fact that a medication is not currently prescribed as much as it should be by the NHS doesn’t mean that doctors won’t use that information to get the best outcome for the patient, withholding that information from them could well mean the patient doesn’t get the best treatment for their current condition.
My worst scenario would be them giving me thyroxine. My T4 levels are only just above the lower range. Dr advised me to add 25mcgs of thyroxine to my ndt and within half an hour my heart was racing at 200 bpm. I couldn't slow it down so ended up in A&E and put on beta blockers. I'd tried thyroxine on its own but kept having palpitations , fainting, horrendous hip pain , migraines and legs that felt like lumps of concrete by mid afternoon. None of these problems since taking ndt. Personally I think having Covid has caused my health to deteriorate.
with very few exceptions (mental health) medics can't make you do anything you don't want to, they need your consent to assess and treat you. You can change your mind at any point. so if they try to give thyroxine say I don't want thyroxine because of XYZ and Im really worried that you will put me into a tachycardia of over 200 bpm. make sure you have that discussion with a Doctor or consultant. Good luck but be open and honest with the medics.
I take t3 that I purchase because every doc tells me Levo is the only thing that can be prescribed- I have notes for emergencies on my phone saying do not give me Levo as I will get ill quickly and my t3 regime. My partner knows it too so he can potentially sneak it into me if I am unable for any reason! I would do as others say, tell them and handover a few if asked to but keep a stash on you incase they won’t allow you to take them as I guess legally they won’t allow it as it’s not a prescribed medicine from them. However it is important they know so they can check for anything that may react with it. I’ve been open with all my doctors and since moving I’ve not even been asked about my thyroid despite attending for various other things like peri menopause. So I’ve not mentioned it yet. I know it’s in my notes since the last argument I had with a doctor who told me if I don’t take Levo I’ll end up in a coma. I tried to explain what t3 is but she wouldn’t listen! Anyway good luck with it all, I hope you’re better soon.
I’m sure it varies from one hospital to the next but I took my Thyroid S in with me. They locked it away in my bedside trolley, but it was on my list of meds and was handed to me each morning. We had a few discussions about the half hour wait for the rest of my medications, of course.
I had broken my leg, so was perfectly capable of managing my own medication. I do worry about what will happen if I’m not compos mentos, but hey, at least I won’t be worrying!
just keep it in your locker and take yourself. They won’t fight you for it. Mention it when asked. When I was in I took my own meds with me - inc liothyronine, as they have no access to give you that, so I guess same with ndt.
I was hospitalised with sepsis, wasn’t expecting to be, went to a&e, expected to be treated and sent home, was admitted instead. So I hadn’t taken my levo with me. Hubby had instructions for what to bring the next day, including the box of pills (just the 100s, I wasn’t going to faff around with the 25s).
The hospital pharmacist did her rounds, came and spoke to me, I told her I took levo, explained the dose, said I only had 100s as they’d given me Teva 25s and I couldn’t take those. She asked if I wanted hospital 25s but thought they only had Teva as well, I declined; overall we had a good chat and she was happy with me taking it. She came round a second time later in the week, similar discussion.
I was in hospital for a week. The levo, in its original packaging, lived my my wash bag, until just before final rounds at 10pm, when it would come out, sit on my bedside table next to a glass of water. In full view of everyone. The second to last day I was there one of the doctors asked about it, don’t know why then not earlier, and I was basically told off for doing what I was doing. I was allowed to keep the packet but had to take it under the nurse’s supervision. So when I got up for a wee in the middle of the night I went and found the nurse, told her I was taking it, she wrote it down, I took it and went back to sleep. The thing that annoyed me was being treated as though I’d done something wrong when I’d been quite upfront with it. Obviously the message hadn’t been transferred from the pharmacist (who is the one that knows about interactions etc) to any of the other docs.
When I went back for the op, I was only expecting to be there one night (I was) so just skipped that dose.
Hospital pharmacist far more knowledgeable than any doctor with regards to medication. They are there to stop doctors stuffing up. Feel free to replace stuffing with any expletive you fancy.
I was in hospital for 2 weeks last year & they just added my Armour to my prescription chart, locked away & dispensed it as prescribed, then gave it back when I was discharged. Some drs were even interested in it! I was surprised as I had imagined it would be a problem.
Hello, I was in hospital with an SVT five years ago and when the registrar came to talk to me about when I should be going home, he asked about my meds. I said I was on NDT and picked up the container to hand them to him. He looked at me aghast, refused to look at the tablets and said he was "a scientist and didn't want to know what I was taking". The key, I think, is to be very bold and very certain in your opinion, saying that this is what suits you and this is what you're going to be taking so that's that. I find that's the only way to deal with doctors (and it's not all of them) who try to infantalise you - as someone has commented here. Just stick to your guns and say that you're keeping these meds as you need them. I also can't tolerate Levothyroxine. Good luck!
He evidently isn’t a scientist, he would have shown some interest if he didn’t know, that is a trait. Always interested in everything - we go by observations and experiments/trials. Of course the experimental design is crucial. If researchers are trying to ‘prove’ (let’s not get into the semantics about that word 😂) something and are utterly unscrupulous it is perfectly possible to design an experiment to return the answer you want . Or disregard large data sets in favour of ones that support your claim. I’m seeing it quite a bit in the papers I am reading. I’m also seeing where there hasn’t even been any research. It comes from other stuff being referenced that should have spurned another study but nothing exists- so an assumption has been made and never tested.
I had an unexpected hospital stay a year ago for six days with a ruptured appendix. I was told to take my normal meds in with me which was 75mcg Levo and although I asked the nurses if they needed it, they didn’t seem bothered. It wasn't taken away from me and I was in control of when I could take it which I kept forgetting to do. It was explained to me that they only need to control medication that another patient could get hold of and also if there could be an interaction with other drugs that they may administer.
They don’t tend to take your meds away now if you are capable of taking them on time yourself. But just incase, take 2 or 3 separate amounts and hand one lot over if requested.
I don't think you need to worry if that's your medication due to being sensitive to levo there just not open minded to it but they can't stop you taking it and it depends what your going in for as they might want you to come off the ndt for a few days to see if it affects your heart issues or not say if you get palpitations/ arrhythmias . Just take in enough for the hospital visit.
I wish I didn't have to go down the self treatment course and I wish thyroxine had been the answer. However, the Dr refused to listen to my problems with it and insisted it was something else causing the weird pains etc.. I know loads of people whom are fine but unfortunately I am not one of them.
I have been in hospital and refused to hand over my drugs for various health problems. It hasn't been a problem.
The last time I handed over my drugs to a hospital to "keep safe (ha ha ha)" was back in the 1990s. They included antibiotics. I only had about two left to take and I was never given them until I complained to one of the nurses. She came back with a single antibiotic which clearly wasn't one of the ones I brought in because it was different colours.
Nowadays if I go into hospital I take the absolute minimum I can. So if I have a packet of, say, 30 pills, and I expect to go into hospital for just one night I'll take just enough for that one night plus one day extra. The others are left at home. My husband usually comes to visit and I leave him with chapter and verse on how many pills and potions I need per day so if I run out he can bring more.
The one thing I would say is that you should accept that you might lose the boxes. Take any pills in with you in their original boxes and bottles, and hope you won't get them taken away. It isn't a good idea to take anonymous pills into hospital with you. With luck you will be allowed to keep them with you, and you'll keep the boxes but just be prepared for having them disposed of.
I do keep some pills in my wash bag in watertight containers.
You'd think we were all doing something illegal in taking pills and potions we've been prescribed or bought with our own money into a hospital. 🙄
I will tell them exactly what I take, how much the dosage is, and when I take it and the reasons why I cannot under any circumstances take levothyroxine. I will take it whether they dispense it or not, unless they can give me a good reason why I shouldn't. Levo put me into tachycardia 200bpm and I will not risk taking it again. Whether it was just that brand, fillers, etc who knows but if frightened me enough to say no more. Not had any problems with ndt regarding palps etc. I will take a few in the original bottle and keep some with me in a separate container.
I was rushed into hospital with sepsis last year. My husband brought my NDT in with him when he visited & I hid them at the bottom of my bag & took them at night as usual. Don't mention you take them & hopefully they won't ask! Good luck! x
Hi, yes I was recently in hospital, I take levo and t3, at first they weren't bothered when I told them it was on private prescription and I just took it as normal, but one nurse saw it and took it off me and locked it away, I made a fuss and said I would get very ill if I didn't take it, she checked and came back gave me it to take and then locked it up again. Luckily that was my last day and I was going home, next time I may do as suggested and give them one lot and keep a separate supply secret and take it as needed. Saves all the hassle. My t3 is thybon henning, so not licensed in the UK. Usually they take your medication off you and give it to you when they dish out beds, sometimes they don't use your supply, but give it from their stocks, that is what the nurse told me, but of course they couldn't with thybon henning. Good luck, they make everything such a battle don't they.
Talk about treating you like you're some sort of recalcitrant toddler. Locking meds away just in case, you know, you might take them when needed, sheesh!
I'm not on ndt, but levothyroxine. If I need an unprescribed medication that I normally take, I either put them in something without telling a nurse and keep them in my personal property like a bag with clothing or my wife will bring them in for me.
I think the reason they take meds off of you initially is that after an anaesthetic some people can become a little vague and confused. The hospital is responsible for you while you're there so they need to know what you're taking in case it clashes with the meds they're giving you. I take T3 twice a day. Since they have no expert knowledge of it I always give them some tablets to lock away, so that keeps them happy but I keep the majority and take them as I would at home. Never rely on nurses giving you thyroid meds because they'll be too busy to remember or it'll be a change of shift and you'll have to explain all over again.
in the US I have been able to have my doctor write that I would manage my own ‘regular” meds, including my NDT. Of course after surgery I was in too much pain to care and it would all go to rT3 anyway, but next day back on my own schedule. I will no longer turn meds over after losing some very expensive inhalers (eventually replaced by the hospital). I do tell the nurses what I’ve taken and what time so they can chart.
Thanks for the info. Unfortunately as my Thyroid S is not prescribed it does not have my name on it or the dosage and its not on my records. I think they will be very unhappy about giving it to me even though my intolerance to Thyroxine has been recorded. As they don't have Thyroid S the only alternative is Thyroxine so there is no other option but to take my Thyroid S or nothing. If I don't take any meds then my levels are going to be completely messed up which will cause more problems. Wish I was normal and got on fine with Thyroxine.
They should not have taken your antibiotics away from you unless they were causing you problems. That’s wrong.
In terms of your NDT, could you get a letter from the Doctor who is prescribing it to state you need to take it?
As I am sure you know, NDT is a sticky wicket in the NHS because it is not approved by NICE. It’s a load of rubbish because it’s a better treatment, but the Pharmaceuticals have control of what’s being prescribed.
I wouldn’t change your medication unless it’s carefully monitored because any sudden changes could affect your heart.
I am prone to heart palpitations if I take too much thyroid medication so it’s something to keep in mind if they try to switch you back to Levothyroxine. They are not comparable levels between NDT and Levo because Levo contains no T3 and NDT is from pigs and not synthetic.
I wish you lots of luck with your possible hospital stay.
Hi. Unfortunately I have to self treat and buy my own Thyroid S as the NHS stopped my prescription for Nature Throid when it became unavailable and would not give me a prescription for any of the other ndt's due to the cost, and of course its not recognised as being a suitable treatment for hypothyroidism by NICE. Thyroxine caused me huge problems when I first took it 22 years ago, with fainting, palpitations, hip pain, migraines, etc...I then changed to ndt's and because my t4 was low was told to add synthetic t4 25mcgs. The first tablet I took sent my heart into tachycardia and a visit to A&E with heart racing at 200bpm. My heart would not slow down so ended up on beta blockers since then. I have never had a scan on my thyroid to see what's going on with it, nor have I ever been referred to a consultant either, though by all accounts most are a waste of time anyway. I have never been happy about having to self treat but what else can you do when the Dr's don't listen?
In Australia, even with a letter from my GP stating I was using Thiroyd NDT and would supply and administer my own, back when I had a major op a few years ago, the nurses took all my medications including my NDT and locked them away, refusing to allow me to take my NDT during my whole stay. I got sepsis after the op from a suture failure and had internal bleeding. I spend almost all that month in hospital with no thyroid medication the whole time. If I had known that would happen, I would never have told them I had it and would have kept it in my bag.
Absolutely ridiculous isn't it. If I can't take my normal medication then that's going to cause my heart issues to not be reflected in their true day to day manner. I'd just done private blood tests and am not over medicated as my T3 is just about mid-range. Funnily enough they allow people whom smoke and vape to still be able to do so, yet these are more harmful than my thyroid hormones.
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