I was in hospital recently (came down with flu, pneumonia and sepsis and was kept in a coma for about a month). I was in an Intensive Care Unit and as I was coming out of the coma, I started asking them about my thyroid medication. . The nurses were vague about the details so eventually I asked my consultant team to find out they were only giving me my levothyroxine and not the liothyronine which I've been on for at least five years! This was in consultation with my GP surgery too.
I was still in ICU and very weak at this point but I'm glad I knew so much about my thyroid. I had various issues, the hospital were giving me the wrong brand (TEVA), they were insisting on giving me my meds in the evening and I had to strongly make my case for morning: I never managed to get it first thing actually but after breakfast. Even when I'd got things changed with one senior nurse, they would revert back after a few days. It was incredibly frustrating, at a time when I didn't have much energy with severe kidney and lung damage.
At another time, they *lost* my HRT patches, and my husband had to go and get some from my own pharmacy as the hospital weren't able to order from anywhere like my chemist can.
It was a bit of a shock that I had to fight so much with the hospital staff about something as basic as getting my medications correct, and also I'm a bit shocked that the staff at the GP surgery were missing out my liothyronine. I wonder if I hadn't fought about it, that they would just have deleted this from my prescription?
I've been out of the hospital for two months, I have a load of other issues now besides hashimotos but, at least, my thyroid levels seem to be getting back to normal
Helen
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My husband was in ICU for a month after heart surgery, despite the Drs knowing he took Levo and Lio it was missed off his meds, after 5 days he was going downhill fast I twigged and had to kick off to get him back on the Lio but from then on it was a fiasco as they kept stopping it, I believe after a month mostly unconscious that it was a huge factor in his death.
I have posted before about not assuming the correct meds will be given in hospital especially as the majority of Drs have no knowledge or experience with Lio. My husband died in one of the leading cardiac hospitals in the UK and his care was appalling from start to end !
That's horrible bantam12 😧 I'm really sorry to hear about your husband. I can't believe they can get it so wrong. If I hadn't been able to speak up, I don't know what would have happened. I had to question absolutely everything they were giving me and asking names of brands constantly.
I was moved into a respiratory ward after 6 weeks and the standard of care really dropped. My husband was terrified they were going to accidentally kill me and I also had a few nasty hospital-acquired infections. I will be doing my utmost to not have to go back to hospital again!
Oh, that is such a sad story, and what a dreadful situation for you both 😢. I send my sympathy x
helen_m Sorry to hear you had such a traumatic time in hospital. I was in only for three days after a TIA in 2021, but they took my Armour away saying I didn't need 'supplements'! Luckily I had more hidden in my wash-bag but it really isn't the way we want to behave.
I had Armour written in my medical records but they refused (or didn't have time) to go ringing my surgery. It was a scary and disappointing experience to be so wronged when in 'expert' hands.
It strikes me that we need a Medical Passport, much like we have locally for our Special Needs family members. It lists all medicines and times taken and is recognised by local hospitals in the Mid and South Essex Group. I took care of my own when I was last in and kept it in my locker, but don't know what I would have done if I was not well enough to do so. Medical staff really do need some education on our medications and timings!
When I had eye surgery for quick onset glaucoma, the Nurses who assessed me for the operation were very well up on T3 being in a good place beforehand.
Hi, that's terrible but unfortunately it is no different here in NZ. I also blame my husband's death at least in part, on his under medicated Hashimotos. The hospital did not approve of the use of T3 so I was able to give this myself (the overseeing Dr was aware we were doing this even though he didn't like it). It was also very difficult to get the hospital to give the T4 30-60mins before food. If I had not stayed there 24hours a day, I don't think he would have ever got his meds at the correct times.
sorry to hear that , it makes you bloody mad doesn’t it, there the ones that should be in the know, I know when my husband , died they had said they were going to put him on life support that night had a phone call early hours they hadn’t, then he died , sorry to hear about your husband,x
Bantam and Helen your stories are horrific. Thank goodness you got to a stage where you could argue for your proper meds Helen and it is awful to think about what happened to your husband Bantam 12 through what was basically neglect.
I’m very upset reading these posts. What terrible situations. Hospitals are not always the best place to be when sick. My friend who had a kidney transplant always said ‘hospitals are no place for the sick’. My experiences of being in hospital was appalling. My GP admitted he knew nothing about the thyroid and I may as well be talking to a plumber on two separate occasions and the hospital endocrinologist was equally as bad. I’ve always thought how things would be for people if they were self medicating but if you’re meds are in the NHS system they should follow the recommendations. A few years ago I thought I’d die due to hospital neglect but I managed to get home and seek private only help eventually and got well. It does worry me how things could end up in hospital or even a nursing home maybe one day in the distant future for us people on liothyronine. I do my utmost to keep healthy and make sure everything is noted on my GP NHS records and most importantly keep away from hospitals as I feel they don’t listen and feel vulnerable due to that
Yes, I'm with a private GP and haven't yet broached the subject of my Armour meds with my NHS GP, have wondered the same about "what if". So sad to hear all the stories above!
Your private GP could send a letter to your NHS GP stating you require Armour. Then ensure it gets scanned onto your NHS file under documents in patient access. This is what my private only Endocrinologist does. But I’m not sure if a hospital Dr would follow your daily routine even though they should.
Thanks that's good advice she's sent me the letter to forward if I want to, so I've been waiting til my dose and symptoms are settled before I pass it on. I had so much trouble with the NHS GP saying I don't have a thyroid problem that I don't want to allow the slightest negative to justify that opinion, I'm confident it's just getting the dose right (and maybe a bit more adrenal support). Wouldn't have thought about needing to specify that her letter be added to my file though, and your form of words looks imortant. Big thank you. The hoops we have to jump through!!
I totally understand. And yes get your levels and TSH bloods right before you do anything further as you say. My GP said I had no thyroid issue also. He said I had depression. Not! When eventually I had a thyroid blood test done months later my TSH was 36 (0.35-5.50). No apology. Then on levothyroxine for years. I kept collapsing. Not fainting just no energy or strength. My cortisol was very low too. After going private only I was immediately put on a liothyronine and liquid levothyroxine 3 month trial which was hugely successful for me. My cortisol shot up as soon as I started T3 also. It still took many months to get the NHS to finally prescribe T3. I’m a very poor converter. I did the DIO2 gene test privately too which came back positive. Over a decade of poor health all because the GP and NHS couldn’t or wouldn’t prescribe T3. When I was admitted to hospital 3 times each for a week they also had no clue.
Yes. No one understood it. Even the Drs. I completely get it now as many of on here might. I feel T3 is energy. Cortisol is strength. Both of mine too low before T3 was introduced. Now both are very good.
This has been my worst fear too - ending up in hospital and being refused my thyroid meds. My GP also doesn't accept that I have a thyroid problem so I now see a private endo. He writes to my GP after every consultation but my GP refuses to put any information at all on my record. I have written to the GP and Practice manager stating why it is essential to record the information but have received no reply and there's still nothing on my record. I understand that this is common practice with anyone seeing a private consultant about anything , despite (as in my case) the consultant also working for the NHS. It's completely mad, we know that most Drs are ignorant of thyroid conditions but this level of ignorance is positively dangerous, as demonstrated by several people here.
I don’t think your GP can refuse to scan any private doctors letters onto your NHS file. Mine was more than willing. He also explained to me that my NHS records belong to me not the NHS or anyone else. They are our records. I really don’t understand especially as your private Dr also works for the NHS. Maybe you could tell your GP you would consider contacting PALS about the situation. He might very well change his mind with PALS being mentioned.
Thanks McPammy, I hadn't thought of PALS, I don't know a lot about them - shall look in to that. In the meantime I will see the endo again in 6 weeks or so and will talk it through with him, he did say he'd write to the practice about this but I don't think he has yet. I'm on a relatively low dose of T3 (25mcg daily, although guess NHS would think this huge!) but still don't fancy going cold turkey, especially if I'm already ill with something else!
very odd your practise won’t scan your endocrinologists letters onto the NHS system. PALS may be a way to get this done. Wait to see you Endo as you say first though. For myself 25mcg would be a very high dose. I’m taking 5mcg twice a day of Thybon brand. I have tried a few brands now and find Thybon best. Some brands I feel aren’t as potent.
I’ve been in hospital a few times recently and simply never gave them my meds. I said I’d do them myself and they were ok with that. But I guess no use when you were properly ill. The pharmacist came to see me and said she wouldn’t be able to get me any t3 despite fact I get it from the hospital pharmacy so I just says I’m fine I’ll do it all myself.
This potential scenario is something I have become quite anxious about recently. When I was in hospital five years ago, the staff insisted they had to administer my levothyroxine. They denied me the opportunity to have it separately from food and drink. Now that I also take liothyronine (and a specific brand), I’m terrified of what might happen if I end up in hospital!
What's also scary is that T3 gives our cells the energy they need for recovery. Anecdotally, I know the time it would take to recover from hard HIIT exercise when on T4 only vs with some T3 (I've been optimistic and stupid enough to try it) and the difference can be a few days to a few weeks. On T4 only a half hour of hard exercise can mean being in bed for several days followed by general malaise and low energy for another couple weeks. Same exercise with some T3 typically still results in some rest days in bed then feeling more stable or just extra fatigued for several days to a week.
We know the adrenals which provide cortisol, which is anti-inflammatory and crucial for recovery from physical shock must work harder unsupported with sufficient T3.
Then there's the factor that a sudden drop in thyroid hormones is in itself immensely stressful to the body. That must be worse by a factor of at least 10 when severely ill or undergoing shock etc.
I'm glad you came out of your coma, obviously! But would you have come out of it earlier if you had been receiving your T3? Would you have recovered more quickly? Taken up less bed time?
What are these doctors doing to patients, especially those undergoing severe acute physical stress by not administering their hormone meds?? I can't see the justification as by suddenly withdrawing the meds they must know they are causing intense stress to a physically struggling system. AT MOST if they think it not necessary, they should titrate it down incrementally. Not just refuse to allow the patient to use it or refuse to administer it.
Agree, I used that as an incentive to get them to give it back. I said you want me to sit up more and be able to do things. Well I can't do that very well without the T3 as that gives me energy. I need it to get better.
Good for you, well done. That was a pragmatic and nice way of putting it. But I guess you have to appeal to something they can relate to. Imagine having to think of most tactful ways to win your essential meds back, after coming out of a coma!
I’m sorry to hear what you and others have gone through. It worries me too. I hope you continue to improve and don’t need to go back to hospital any time soon
When I was in hospital (many moons ago thankfully) they could not even ‘manage’ their own prescribed meds. I used to get about ten different pills given to me at the same time, including omepramazole. I can’t help but think that would suppress the effects of the rest of the medicines! I still think it’s very much worth getting the meds we need to live today and tomorrow and prepare for the worst if we enter hospital. I feel entry into a ‘home’ might be more difficult if we are unable to fend for ourselves. A good friend? Family? To help us?
I am sorry you have had such a tough time, and am glad you are getting better. The last thing we need when we are in hospital is to worry about our normal prescription, but this seems common.
When a "specialist" tried to tell me my back pain was all in my head, I lost it, and screamed at him to read my F'ing notes. (I very rarely swear, but had seen red) The scan had clearly shown growths on my kidney. He had also dismissed my daughter as "trying to get out of exams" when she had sarcoidosis. He walked down the ward with me calling him a charlatan, that a witch doctor could do better, and to hang up his stethoscope. I did put in a written complaint about him.
It seems we each need a friend or partner with us in hospital to keep us safe. This is common in African countries, where a relative does most of the caring. Is this where we are heading?
Thank you for arming us with knowledge and I'm sorry that you received such appalling medical treatment at the hands of hospital staff when you were so unwell.
bantam12 What your husband experienced was beyond negligence. Pls accept my condolences for your loss.
I am horrified to read these narratives and the despicable level of neglect that they portray.
Bantam12 I can only imagine how upset and angry you must be and I send my deepest condolences on the loss of your dear husband.
I do consider myself warned though...so many thanks. And I am now planning to write down my own med regime and maybe warn close family members that, in extremis, there are things they may need to do in order to keep me alive in a hospital setting.
My husband had complex medical history so everything plus meds was written down in great detail and given to the staff, made no difference as they still messed up and in an ICU situation there is nothing family can do other than try and pursued the Drs to comply, easier said than done believe me !
I have been out of hospital for 2 weeks now. Fortunately I took advice here first and when they asked for my meds I said I have been taking these meds for 25 years I prefer to carry on doing that. They tried to put them in my locker but the door wouldn't stay shut so they lived on the trolley.
Even then they tried to give me levo the next morning. And argued that I should be taking it half an hour before breakfast instead of at night!!
My case was different of course in that I wasn't ill, apart from the after effects of 8 hours of aesthetic. I suspect I might have missed a day but it could have been worse .
Also hubby was prepared to bring more if anything went wrong.
30 years ago this was happening, whereby the hospital doctors stopped my meds following childbirth, only for the consultant 6 weeks later condemning their action, and me consequently sinking low. He reversed their decision.
Also, 5 years ago when my mother was in hospital with a broken thigh bone, which was caused whilst in a care home!!! ,she developed a urine infection, which made her hallucinate etc. The hospital staff had not administered blood transfusion, intravenous antibiotics or fluids, or her normal meds because..... she had refused them!!!! I went berserk! They said they thought she had dementia!?! Why should that make any difference?
Also, last year, I ended up in hospital. They basically stopped all my medications. Even a week later when I asked the doctor why the levothyroxine (which I was on at the time)
had been stopped, I was asked why I wanted it??? They were unaware that I had hashimoto's hypothyroidism!!!
It seems to me that the carers, nurses and doctors that I have come across are inept, and naturally I have lost trust and faith.
This should not happen.
Sorry to go on and on, but this is just a small sample of my experience of ineptitude within the NHS.
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