I am wondering what people’s experience is of being admitted to hospital while taking T3.
Has anyone managed to have it prescribed while there?
Does it matter if it is prescribed privately or NHS?
Has anyone smuggled it in and taken their own supply?
Has anyone had it removed and suffered consequences?
I am interested to know what your experiences are and whether they vary in different hospitals
Thanks
I always make sure to have it with me and nobody knows what I am doing and I doubt if they would care. They are much too busy.
Just to confirm it is prescribed for me, so all fine in that respect but nobody has ever asked to look after it and I have kept it in my locker and chop it up as usual with my little knife to get my doses right.
is that the in the same hospital that has prescribed it for you? I have to say I would be tempted to take my own in if the need arose. Sad that you feel no one would notice or care. ☹️
No, my GP prescribes it but only after I saw an endocrinologist privately many years ago. The practice took on the prescription when I asked them, after buying it myself the first time. I was not as astonished then as I would be now but that was when it was a reasonable price and before the NHS got duped into paying a ludicrous figure for it.
Recently I had to see an NHS endocrinologist to confirm my need for it and fortunately she was on my side and wrote accordingly to the CCG and my GP. I expect I shall have to fight it all again one day, when CCGs change to something else. It is bound to happen. Thyroid patients will always be struggling to be heard and understood. We are an easy target, a complicated issue that nobody really understands and mostly women.
So, despite your T3 being endorsed by an NHS endocrinologist and prescribed regularly by your GP ( and therefore listed on the NHS records) it is still not given to you in hospital?
I am so glad you have an NHS supply and you are able to treat yourself. I am sure I would do the same. X
I think you misunderstood me. I am prescribed T3 and I am sure the hospital would give it if asked but I always would take my own, as I would never wish to go through the performance of waiting for the hospital to prescribe it and then have it ready for me when I needed to take it. My view is, “whenever possible, be prepared”.
Sorry if I misunderstood. I am glad you think they would prescribe it, but think I understand that you prefer to control it yourself? I imagine it would be very difficult for them to be able to give multiple doses a day at the right times as they are so busy.
Not a bad idea - I wasn't given my steroid in the morning and the Dr. merrily went off on her rounds and when I asked the nurse where is my steroid - I was getting it via IV 200 mg of HC - she rushed off to the Dr. who was now on a different section of the ward and told me the Dr. said 'she can wait' - I had Sepsis and was on huge IV amounts of antibiotics - she apologised afterwards - saying I didn't realise you were an AI patient - she could have killed me !
I'd be very worried about depending on staff to give me my T3. I would tell them, in case of anaesthetics etc but I'd keep a supply hidden.
My sister had an emergency stay a year ago, and was taken back in twice. Staff hadn't a clue what they were doing with meds. She was given T4 with food. She was written up for penicillin when it's written (LARGE!) on her notes that she's allergic. Staff forgot the IV antibiotics when she'd already beet told they were worried about sepsis. Staff left her 2 types of tablets in a pot - she said she didn't know which was which and she wasn't due some for 2 hours. They said not to worry. Appalling care.
I agree don't get me started on the nursing care - and in a major London Hospital - the doctors were great saved my life when I had Sepsis - but the care afterwards was non existent unless they were at their computer terminals or handing out drugs I never saw them - when I needed their help too.
When I was in hospital I was asked to hand over my meds to the nurses, who would give them to me each morning as prescribed. I never got any at all. WHILST i fo declare what I am taking, now I would not be prepared to hand over any meds and I would insist on taking them myself at the time I usually take them.
Hi, I have had 2 operations and simply took my medications into hospital with me and handed them to the nurse when I was admitted.My T3 is supplied under private prescription, so I buy it, I have it in stock, but the hospital still add it into their ward rounds.
I would suggest it's potentially dangerous to surreptitiously sneak medication into a hospital to take secretly, because one never knows what medication will be necessary to be added to the cocktail, and I'm certain that the staff would much rather know what their patients are taking.
My experience is that they rather insist (in a caring manner) on knowing and are fully supportive of keeping it safe under lick and key and continuing to provide it at the correct times.
Well wishes in health.
If the Drs treating you in hospital don’t agree with you using T3 you will have a hard time getting it but it’s not sensible to omit it from the list of meds you are taking.
I recently had a long stay (6 weeks) in the Royal Free in Hampstead and 2 of those weeks were in intensive care. I am prescribed T3 by a private endocrinologist. The consultants were happy to maintain my dose (I wasn't in a position to self medicate). They did reduce my T4 at one point as it went over range, but then adjusted it upwards once I started to recover. They constantly monitored both my T4 & T3, I guess if my T3 had gone over they might have reduced that. They used my supply of T4 & T3 that I took with me.
I was very reassured.
That sounds fantastic! It is really good to see a hospital doing the right thing well, especially when it was a private prescription. I think that is the kind of situation that scares me, when I was not able to advocate for myself.
I suspect it might be down to the attitude/ knowledge of the consultant in charge.
Hi there - interesting - Royal Free have good endo function - one of their endo's went on to become President of the BTA (British Thyroid association) so that is why you managed to get such informed treatment. Shame it isn't country wide. Pleased you got the treatment you deserved. Keep well !
Who was that??
I didn't mention because I wasn't sure we were allowed to mention names - if we are I will gladly let you know - perhaps someone can confirm.
Private message me?
Would you private message me with the endo's details. Many thanks.
I never know how to do this PM business can you remind me please.
When I was prescibed T3 by the NHS Endo, I had a bit of a fight to have it noted on my medical record as a regular medication.
My GP is scheduled to take over the actual prescription in April (previously the Endo did the prescription which was filled at the hospital), so it will go onto my repeat.
Unless I was in hospital for something thyroid, I would be horrified to find my T3 withdrawn.
I would only take a modest supply to hospital with me, just in case it got "lost in the system".
Call me cynical if you like.
I've got lots of experience with this, in private and NHS hospitals. If you want to be given any medication in a UK hospital it must be on your GP prescription list. If it's a private prescription take in a letter from a consultant to prove you need it - your GP will have notification of this private prescription but unless the GP prescribes this regularly it will be deeply embedded in their notes and not immediately obvious to the hospital. If you supply your own, and it's not recognised they can't give you any while you are in hospital, but you must tell them you take it otherwise they can't look after you properly - if they don't have full knowledge of all medications they can make mistakes. Also, even if it is on your prescription list they might not have any in their pharmacy. So take your own supply in with you. cx
I’ve been in 2 different hospitals . I am always clear as to what I take . I self source T3 but still include when I list them
I take my own in and take them as I usually do early morning dosing . I Keep them in my toilet bag .
One of the hospitals tried to supply them for me whilst in but I was able to tell them I had my own . I continued as above and they were fine .
Lady consultant !, cardiologist . !
If I was unable to see to myself this story could be a bit different 🤔
I think you have identified my fear. I have T3 from a private endocrinologist and live in an area where the GP would not take over prescribing, so it is not on my NHS list. I would be happy to take my own in, but scared if I could not advocate for myself.
My experience with taking my meds with me to hospital, is that the hospital takes them away and locks them up! The reasoning I'm told is to stop me committing suicide whilst there!!! They then replace them with the list I supply them with! Bizarre.
yes Mollyfan no answer to it . Hope is all we have 🤞
I take my own.
I have never had a problem taking it in hospital, but have had a problem with the hospital not stocking it. I just tell them I will bring in my own and take that as normal, no one has ever said “you can’t do that” I would ignore them anyway if they did…..
A friend who spent many weeks on and off in hospital always had his own meds taken away. He was told the hospital couldn't allow him to take anything they hadn't prescribed for him. So they basically duplicated what his GP prescribed and gave him the pills from their pharmacy instead of his own.
Can it be that hospitals vary in the way they handle this?
liothyronine is not a common drug anymore, usually when I tell them I’m on it they ask what it is, when I say for Hashimoto’s I then get oh Levothyroxine…. It’s not a case that I don’t tell them what I’m taking. They know exactly what I’m taking I just take my own in, and take them when I need them, not when they have the time to give them to me! Some of my meds need to be taken before food. So it’s no use giving them to me 3 hours after I’ve eaten!!
Last time I was in they asked me if I wanted to self medicate with my prescribed medicines, which I did. I was just given a bag for them to keep by the bedside and took what I needed when I needed it. Have to say I was in the high dependency unit and ICU for a week, no clue if they gave me my meds then but I assume they did!
I don’t ask any more I just tell them what I intend to do and then get on with it
I take it with me and administer as usual.
Years ago they would take all your medications away but that has certainly not happened in the last 20 years. If you are worried, take a spare supply and only hand over one lot!
When I was admitted as an emergency just five years ago, they insisted on taking everything away, and prescribing separately. It was very frustrating, because I never knew when breakfast was being served in relation to timing of thyroid meds, and the staff ignored my requests to take the meds away from meals. I had to have meds when they administered them, whether with a meal or not. Staff seemed clueless as to importance of timings.
You would have to be careful with that as Drs would need to know what medication you take to adjust for anaesthetics etc. - I was told off because I forgot to say at that time I was on HRT - the registrar said you should have told us that as it affects dosage for drugs etc.
To be honest I have not seen any joined up thinking between what we tell the anaesthetist, or anyone else and what staff on the ward know re medication and medical history. I guess because they are so busy no time to study all notes on any patient. Focus on here and now.
Anaesthetist would have to know otherwise they could seriously hurt you - other staff will have daily meetings on each patient so they should know but don't care that is the problem.
I take only the T3 and T4 I need to hospital with me plus a couple of spares of each. I would never take a whole box or a whole blister pack - I would cut the blister pack with scissors to my requirements instead.
I also make sure my husband knows exactly what he has to do if I need more supplies, just in case he has to take extra to the hospital. (It's never happened yet.)
I hide my thyroid pills in my toilet bag in a way that they won't get wet.
I always tell doctors that I'm taking thyroid hormones, and that I will take responsibility for them. Ditto for telling my husband what my dose is so he can visit and give me the right amount if necessary. I wouldn't trust staff to remember to dose me or to remember to record it in my records.
Where I live patients are told to take all current medication with them when admitted. These are then handed over to the staff and dispensed on ‘drug rounds’.
I have taken my own ndt in and kept it with my belongings. When I couldn’t reach up got my hubby to pass over when visiting. Once mobile just took it myself.
If I am ever in again I’ll hold onto more as the timings don’t always work out and the sleight of hand so they can’t see patients not taking everything at once is tricky.
Hope all goes well
Where I live patients are told to take all current medication with them when admitted. These are then handed over to the staff and dispensed on ‘drug rounds’.
I was told to do this about 20 years ago.
I had an ear infection that had nothing to do with me going to hospital, it was just a coincidence that a planned surgery and this fairly minor infection happened at the same time. I was on antibiotics for the infection and only had 3 left to take.
I was only given one of the remaining antibiotics, and that was only after I had repeatedly asked. The capsule I was given was a completely different colour than the ones I had handed in. When I queried it I was told "Oh, it's fine, it is the same as what you were taking, but this is a hospital - we have loads of antibiotics in the drugs cupboard."
So, I took this single capsule of goodness knows what, and never asked for the remaining ones. I wasn't offered them either. I have never handed in any drugs I was on in hospital ever since.
My last hospital stay was just before Covid so nothing like 20 years ago. My prescription meds were only allowed twice a day. The painkillers I was prescribed post op I was refused by nurse as she was “only allowed” to give paracetamol and ibuprofen. Prescribed pregabalin and tramadol! Luckily the doctors rounds meant her ideas were corrected. I never want back there.
Was admitted to Northern Ireland hospital during pandemic for cardiac investigations. Told them I was on T3 and there was no problem with it. I just kept my own T3 tabs in my locker and took them with my other meds which were given out by the hospital. I just was open about having the T3 with me when I was admitted. On the day of being discharged, I was seen by the hospital pharmacist who did a review of my meds and talked me through the couple new meds which had been added on. He was absolutely fine about the T3 also and in fact said some other member of his family was on T3 and just asked me about how I found the process of getting them. That was my experience. Hope this helps. Good luck with your hospital admission
Take the box in - they’ll give it to you as prescribed. Then you take it home when you leave. Better to be honest about meds.
Thank you so much everyone! I do not have a hospital admission planned at present but wanted to know what experience you all had so I can be prepared. It seems that the vast majority of you would take your own supply in and keep it on you to take as you need. There seems to be a lot of concern that the nurses and doctors are too busy to rely on and have little or no knowledge of liothyronine.
It seems odd that other people on time sensitive medications such as those with Parkinson’s disease or diabetes can be accommodated, but not us.
If necessary I will take a small supply with me, tell them what I am taking and that I want to sort myself out and get my husband to bring it in when necessary. I will also take a cope of my most recent consultant letter
You are all wonderful supportive people.
Thanks!
I always take all my own meds. I tell them what I take and just tell them I take care of my own stuff. Same for my DH, who cannot take care of his meds. Most hospitals nowadays are glad to be spared the money and worry about meds. If there was a discussion, I would still take my own but discreetly. I would just love to see them preparing an eighth or one sixth of a T3 tablet, which is what I take and need
As to trusting them- no I certainly don't. Was in hospital at least 20 times, plus mom, DH and kids. NEVER were all the meds right all the time. NEVER. My mom got double the amount of T3 she was taking at the time, because they did not know what to do with the rest of the tablet!!!! Luckily I saw this in time.
Good grief this is scary to read.
I don't have personal experience of this issue.
However, in recent past (months to year or two), I have seen several references to the issue of patients taking their own medicines into hospital with them.
It used to be the case that (some?) hospitals would do everything they could to stop patients having their own medicines. Then insist on dispensing medicines from their own pharmacies. Whether they were the exact same product, another make, made up from different dosages, etc.
This seems to have massively reduced with a significant part of the issue being cost. By avoiding re-prescribing and re-dispensing what the patients already as, they save lots of money.
It was always a questionable policy and glad to see the back of it - for most of us.
I suppose, in a perfect world, the staff would have enough knowledge about hypothyroidism/ liothyronine to be able to prescribe correctly, enough time to do it, and a supply from their pharmacy of suitable drugs. Failing that, they should have a grown up discussion with the patient and give them the autonomy to decide how they manage their condition. Sadly there appear to be some doctors who are paternalistic and think they should control everything and do not trust their patients.
It is good to hear that this is not always the case and some people have good experiences.
Please read my first reply. I insisted on self medication for all my usual drugs. I wrote a timetable for all my medicines and they ticked them off when they came the drugs trolley. I had to sign a form for taking responsibility for doing so which is acceptable. However they gave me any painkillers I needed post surgery.
Indeed patients should be treated with respect and not be treated like irresponsible children. However, I am aware some people do not behave responsibly. Good luck.
I recently had a short stay in hospital with post covid symptoms. My husband brought my meds in and I was allowed to administer myself while nurse monitored for their records as I have a regime of 75 or 100 thyroxine alternate days with 5 (quarter tablet) t3. I sort it weekly into a daily box. They said it would have taken a while to get the t3 while thyroxine of course readily available so it was ideal.
T3 is prescribed by gp after consultant put me on it 15 years ago.
What's more one medical doctor actually showed great interest in why I had been prescribed it that way so maybe another educated doctor now
I only take Levothyroxine, however when I went into hospital 6 months ago for an op they asked me to take my medication with me - so presumably you could do that?
They took it off me and then brought it round at meds time - and gave it me back when I was discharged.
In the admission letter they asked me to bring all my drugs which I did. However I told them I would self-administer as I had done previously and they recorded when I took my tablets. I had to sign a form. I usually take my thyroid tablets at 6.30 am and often this doesn’t happen in hospitals. They of course gave me extra drugs to relieve pain post surgery.
Hi Mollyfan,
I was admitted into hospital on Wednesday 1st February for a hip replacement operation. I took my tablets with me. I saw an endocrinologist from a different hospital a few years ago who prescribed Liothyronine although I had been taking levothyroxine only since 1980 and was having problems functioning.
The day after my operation the nurse came round to ask me where I got the Liothyronine from… who prescribed it for me. So was able to give her details, and I carried on taking my usual tablets. I gathered they might have been difficult had this not been prescribed by an Endo. The hospital I had my hip surgery at do not prescribe Liothyronine. In fact I could not even see an Endo there who would understand I needed a combination therapy. They sent me a letter stating that this hospital did not prescribe Liothyronine…. because of cost. How shocking!
Do hope you can find a way forward. It should never be that difficult for patients to receive a decent and necessary treatment,
This made me smile 😀 although I was not actually admitted to hospital I was in A&E 3 times in 2021, my symptoms were sweating, shaking, nauseous actually vomiting in A&E..bad headache, bad body pain, wanting to pee constantly and had a raging thirst, I took my T3 with me just incase I got admitted.The A&E doc had no idea what was wrong, this was my 3rd visit everytime I got the same response 🤷 and everytime the doc looked on the computer and noted I was on T3 , he immediately said "it's your medication T3 that's causing the symptoms you need to come off them or decrease them"
I asked him on those 3 occasions to check my latest bloods as I'm not over medicated, he looked at my last boods and indeed confirmed I was not over medicated.
I then asked what my calcium was (diagnosis of primary hyperparathyroidism in 2020) 2.59 I told him he should do a PTH blood along side the calcium, he refused saying your calcium is in range 🤦 but as I said before you need to come off the T3...even the report sent to my surgery said.. vomited in A&E raised heartbeat, noticeable sweating and shaking.. urine test showed calcium oxalate crystals..taking T3 at here own risk!! have advised to decrease or come off altogether 😂..so if I ever did go back into hospital I'd need to hide those T3 tablets, eventho I was prescribed them by the resident Endo within that hospital 🤷 beggers belief eh🤦🤦
Could be an adrenal problem - what you are describing - although blood pressure would be down - you might need adrenal gland support via steroid to compensate for the uptake on the adrenals via the rise in metabolism. I can't mention which hospital but last time I went to see a certain consultant who I hadn't seen for years - she said they don't give patients thyroid hormone without adrenal support. Although you are also describing something that happened to me and the T3 was too high - consultant said I think you are over medicated - I was very annoyed and said I don't think so (after many years of trying to get Armour/Erfa - but she was right - it didn't agree with me within that product and it stopped when I stopped taking it. Now on lower T3 on its own not Armour or ERFA.
Hi posthinking01💓
I'm on 20mg T3 ATM ,in hospital the doc checked my thyroid levels and noted I was definitely not over medicated, I knew this as I'd just recently had my thyroid bloods done.
Because I got the diagnosis of primary hyperparathyroidism the symptoms are definitely of this condition , I'm still going through this now, I've been on T4 (lactose free) T3 (lactose free) and I couldn't stomach T4 at all, my bloods were always awful, endo said I had an absorbing problem that's how I got on T3,.
Unfortunately because endos know very little about thyroid illness they know less about parathyroid illness, a parathyroid surgeon as identified a nodule in my neck I'm now waiting on the pet chlorine scan at Liverpool.
But when my thyroid went crazy (hype/graves) after removal I did have the cortisol test because my cortisol was below range, unfortunately I didn't get much info only that I produced cortisol during the test, I never saw the report and can only find this response in my records no graph with timing of the cortisol ect!
But in response to the steroid thing, I was rushed into hospital in 2015 with bleeding from my rectum and vomiting blood, after 11 days and a diagnosis of reactivate colitis the specialist put me on steroids for 3 months...they were the best 3 months of my life..my body pain eased, I had energy I felt really well👍 then I had to ween off them then everything returned 🤦 I told my GP I'd like to stay on the steroids as I felt so well on them , he refused saying you can only stay on steroids for a short duration, I found this out to be a lie after my cousin's husband got diagnosed with Addison disease and his endo put him on steroids for life!.
I'm hoping to get some bloods done privately and intend to include cortisol as my GP will only do thyroid bloods (he was forced to do PTH and calcium vit D because the private parathyroid surgeon I saw asked for them to be done...he wasn't best pleased, but I couldn't give a stuff what he thinks, 👍
Hi - I had blood tests that were showing all OK for over 20 years and I wasn't - it's always worth bearing in mind that if you have heart palps and sweating it could be too much so adjust down for a day - that won't do you any harm. I did this all the time when I was on thyroid meds T4 - and when on T3 it is a game of which dose makes me feel better not the blood result. If I had your symptoms I would be thinking could it be ....? Trouble with thyroid issues it could be too low symptoms or too much - I was losing my hair at one time and my skin was dry etc. etc. and increased my dose even further until I read that the symptoms for over medication on T4 etc. was the same as too little. Bit like house plants - too little water they keel over and too much they keel over. Trust us to get the most complicated deficiency process on earth !!!
Yes I've done the dosing thing. I started low on T3 at 10mg for 2wks still had symptoms, but went to 15mg still had symptoms got to 30mg still had symptoms, came down still had symptoms, came off and tried T4 again because of GP...still had symptoms, obviously the parathyroid surgeon told me thyroid and parathyroid symptoms can mimic each other, he also checked my thyroid function ,I was not over or under medicated 🤷He feels my symptoms especially the constant trips to the toilet utter thirst , headaches, shaking, fast heartbeat sweating can also be attributed to too much calcium in the blood stream, which I have had..over range calciums and PTH.
So waiting to see if the nodule in my neck is a over active parathyroid gland 👍
But as I said I'm still going to get some private bloods done (cortisol especially)👍
Good idea - good luck hope everything works out well for you !
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