My 94 year old Mum was in hospital after a fall during the winter for 2 weeks and my efforts to ensure my Mum took her normal T3 dose was ignored. Mum went from walking well to a sleeping wreck. It was only when she came home and could take her T3 again that she improved after a month but not back to her previous health or strength. In the heat Mum became unwell and has a possible TIA but I am having the same problems with her T3 private prescription written by an NHS endocrinologist. I really dont understand why it can't be continued in hospital when it has such a detrimental effect. I am so worried that again she will go downhill and not recover. One endocrinologist I saw said that most of the elderly in nursing homes should be on T3 and they wouldn't be sleeping all day if they were. What can I do? Surely there is something wrong with the system!
Elderly Hypothyroid Mum in hospital. Takes T3 b... - Thyroid UK
Elderly Hypothyroid Mum in hospital. Takes T3 but been told all CCGs and Local NHS Hospital told not to use T3 and Guidelines Formulated
Really sorry to hear about your Mum and her T3 having been taken away in hospital. I think the only answer is to go into the hospital each day and give her some T3 if you are able. "the system" cannot see beyond the end of their noses and worship at the altar of the TSH test. The system is not the slightest bit interested in people who feel well on T3 because the system knows that we should all feel perfectly well onT4. If we don't it is all in our heads!!
Exactly. Well said. I have just increased my NDT today by .5 grain and I feel so much better. Now I come to think about it I am not aching anymore, I didn't notice. Wow, its 11pm and I would have been asleep by 8pm, I didnt realise the time. I shall take some in tomorrow.
Dramlouie
Your poor mum 
I agree with Crimple. Whoever goes to visit her, make sure they take her T3 and see her take it. It probably might not be at the absolute best time like it would be if she was at home, but at least she would get some benefit.
One thing that really struck me when my father (who was 90) was hospitalized last year in a Intensive Care unit is his nurse telling me that even the young patients decompensated too in units. Decompensating seems to go with the territory whether you have a thyroid problem or not, whether you are elderly or not.
In my view the biggest mistake hospitals make is adjusting long standing medication routines like this. Especially because they know that even young patients decompensate under their care.
Oh my Dramlouie , I'm in the states & the same happens here. At best they say as a general rule to have an advocate ( family or friend) to speak ( or more) on the patients' behalf. Well, I learned 32 years ago ( I'm a 50yr old female) when my first parent was ill ( both passed by my 44th birthday) just bring your own& that includes comfort things like clothes /treats . Lots of affection & healing for your mum! 🏡🤗💓
I learned 15 years ago when my daughter was seriously ill after major surgery and on a gluten free diet that I had to do meals on wheels for her. I took a hot meal every day and GF bread and butter. She was so lucky that I was able to do that and I was in walking distance.
My grandson was in hospital last year and he is coeliac and they actually were able to offer him GF toast and cereal!! So things do change but it is always best to be prepared.
Also you need to be aware that many health "professionals" are totally unaware of what the issues are around food and medication and I never say what I am doing, I just do it!
Absolutely!! 👍
So nice your daughter had your help & your grandson is able to have GF options! 😀
I would just add when my son went or a gastroscopy to check for coeliac disease, having fasted for about 18 hours there was only gluten free bread but no toaster to toast it on because it would involve cross contamination. They would not let him leave hospital following the procedure until they had seen him swallow. Fortunately for him he was only just going to eliminate gluten after this procedure so he opted for the gf bread to be toasted anyway.
This was at a major teaching hospital in a large city.
When he had a colonoscopy there months later I took homemade sandwiches and gf snacks as he had to not eat for many hours before the procedure, he was almost ready to chew his own arm off he was so hungry!
So sorry to read of your difficulties when your Mum was hospitalised....we are not individuals but merely subjects of hospital protocols and must conform when under their 'care'. IMHO the NHS has become a monster and should be dismantled and a new system put in place....one where we are all treated with the respect we deserve. Good for you for being there and doing the correct thing at a difficult time. 
awful to near of this barbaric treatment. At least she has a nhs prescription for T3 , Take it in and sort it yourself inspite of the nhs system.
I had the opposite when I was in just over a year ago lol. This was before my T3 had been withdrawn and I had my own meds with me but I didn't get them before breakfast, the trolley came round afterwards. Because I have half a tablet the nurses cut it half and threw the other half away saying they weren't' allowed to give me one that had been touched. They had gloves on. Now I know how much they cost that was an awful waste of tax payers money.
Good grief! 😳 They couldn't get it right if they tried! What a waste ~ and then to have your T3 withdrawn because of 'cost'..... I despair! We should all compile a book entitled T3 Tales, detailing all the ludicrous experiences of members..... x
Good idea Mamapea1 and send a copy to the CCG. I did write to the CCG and tell them about that when I got home as they put out an advertisement about medication wastage. I took my days of the week pill dispenser with me too and was taken into hospital on the Tuesday so 6 days worth in it and when I got it back it was empty. They'd thrown everything away saying they weren't' allowed to send me out with anything not in it's proper container. The T3 had already been cut in half so they could have given me that in hospital but weren't' allowed to do that. So all told about 5 whole T3 tablets were lost there which doesn't sound much but would have cost £45 and that's without my other pills. Think of that up and down the country that must all add up.
Yes, they often put out these ads re medication wastage ~ incredibly ironic in the circumstances!😕. Did you get a reply from them?
They have all these 'safety' concerns, and yet their meddling with peoples meds can have such detrimental effects on patients, as in the case of Dramlouie s poor mother! At her age especially ~ they have no right to make these uninformed decisions about peoples meds!😡
The whole system is broken IMO ~ they waste our money on a myriad of Big Pharma rubbish that most patients wouldn't touch with a barge pole if they knew the truth about them, and then take away life saving ones that we really need!
The only ones winning in this situation are those at the top of BP, raking in the 💰 ~ I don't think most of the NHS workers lower down really understand WHY they're doing half of it ~ Stepford workers, following poorly thought through instructions!
When I was researching my 'ME' 25 years ago, there was a lot of evidence even then re the positive effects of cannabis oil etc., on a variety of conditions, Parkinson's as endomad has confirmed ~ but still people are fighting to be heard over this.
The poor woman recently in a desperate position with her sons epilepsy for one.😔
And this is not because we will all become drug addicts, or it will be abused by those who peddle drugs, ~ it's only actually been a 'problem' drug since it was mutated to make it stronger for USERS (not patients) wishing to get higher, which has made it unbalanced ~ IMO it's because there's no💰in it for BP! The natural, unaltered version has many health benefits for many conditions.
So our opinions and health concerns get ignored in place of some idiotic rules that are of no benefit to us, and in which we are not treated as individuals, but merely pawns in the BP monopoly. We have to look out for ourselves and our own, and learn all we can, especially with poorly understood thyroid conditions. x
Sorry ~ went off on a bit of a rant there 😳 so annoying...... x
Here's the reply, well would be if I knew how to add it. Can't see a button that allows it in a reply.
I'm afraid I can't help with that ~ useless technophobe!😕 x
Well they just said basically that they would raise the issue at their next meeting.
My T3 has been reinstated on nhs after 10 months argument. I queried the amount of tablets 504x20mcg for 3 months, I was told as I have to divide a tablet the other bit must be thrown away. So I have an extra weeks worth of tablets every 3 months!!! When ccg stopped my T3 it was because it is expensive. You couldn't make this stuff up it is just wasteful and disrespectful to tax payers
It makes no sense at all!😳. Still, at least it gives you the opportunity of 'getting ahead' with your meds 👍 ~ just in case they change their mind again and decide they can't afford it after all! Madness! x
Endomad
"I was told as I have to divide a tablet the other bit must be thrown away"
Is that because you are dissolving it and throwing away the extra liquid or is it actually half a tablet you take orally with a glass of water and throw away the other half a tablet? (If you get my drift).
When I was on 175mcg Levo, my GP told me that rather than mess about with 3 tablets - 100mcg, 50mcg and 25mcg - then to just cut the 50mcg ones in half for the 25mcg dose.
Just wondering why it's OK to cut a Levo tablet but not a T3 tablet, if that is the case.
They said to dissolve in water or cut in half (they gave me a pill cutter) but whichever way they dont advise using the other half, absolutely mad but for me its a bonus as they are often 5-7 days late with my prescriptions. Totally wasteful though x
Did they tell you how to dispose of the unwanted liquid if you chose to dissolve it and only use half? And how to dispose of the half tablet if you cut it in half?
I can't understand why they would say don't use the other half of the tablet if taking as a normal tablet. I've been cutting my Levo in half for a long time, nothing wrong with the second half. Unless they think a T3 tablet can't be cut accurately??? I put my spare half in a small screw top pot and use it the next day.
As a water engineer i would be against flushing it down sink/toilet as waaaaay too many hormones in our water already. Obvs i keep the halves and use them but no they didnt advise how to dispose x
And i have always had to cut tablets and never until last time been told to bin any, in fact they dispensed the correct amount to cover, which is why i queried the 504 tablets for 3 months as too many but they have done me a favour but a very wasteful one, as not wanting to prescribe t3 is due to cost, now its 'to hell with the cost'
When Mum was in hospital before for 2 weeks I gave a nurse 3 letters from her NHS endocrinologist stating her T3 dosage and times to be given etc. I took in her new box of T3 I bought privately. In 2 weeks they wouldn't give her any, I couldn't speak to a doctor, for some reason no-one was on duty and no doctor rang me back, I wonder why! Her letters and box of T3 disappeared! She slept all of the 2 weeks and when she got home within 2 days of T3 again she woke up and was able to speak again but she was a lot weaker from the time lying in bed.
I'm a live in carer, and several times my patient has been hospitalized. I brought in all her medication and the staff administered it, so I don't understand why this didn't happen with your Mother. Is it because it was T3?
I don't think we are allowed to swear on here but that is absolutely bloody disgraceful, unforgivable, WTF are the drs & nurses thinking, i am angry for you.
My old mum has parkinsons and use to have marijuana leaves with cheese 2-3 times a day to stop the shakes, pain & anxiety, it really works for her unlike conventional parkinsons treatment which has horrific side effects.
We took it in each day and the nurses were fine about it. I would absolutely challenge your mums hospital right the way to the top, newspapers, local MP and anyone else. Legally i think they are on tricky ground with holding a patients medication.
On the ward my Dad was on for the few weeks prior to his death, a young wheelchair bound man with ME would, my Dad reliably informed me, go outside and 'smoke some weed' because it helped his condition somewhat. Many eyes looked away and 'didn't notice' any of this...it does seem compassion and kindness exist, but that you just never know if you will encounter it or not. So glad to hear your Mum wasn't prevented form using her method of medication....
I'm so sorry for the way your poor mum has been treated.... You should publicise this appalling treatment. How dare they? I do hope she will get her health back soon.... 💐xx
So here is an update of events and I am exhausted and aching and just got home and having a large bowl of ice cream......all the tests were ok and the carers rang the hospital and said I would need help with Mum. I found Mum with a hospital gown on and told the nurse I was taking Mum home with which Mum gave a huge smile. Then the nurse wandered off, not doing much. The chair was very low with high arm rests and Mum with her now weak legs and painful shoulder joints would not be able to get up by herself and I certainly can't lift her up as I am waiting for physio on my back and got bad hip joints waiting for two replacements. I said she can't go home like that and she just replied that other people do. I said she needed to have her dressing gown on and the nurse just said well you can do it. I said I can't and she got all cross and said I would have to help her so squeezed behind the curtains and trying to control my OCD of hospitals. She was so rough with Mum, Mum cried out in pain as she was tying to get it on over the stickers and it was catching on them. I thought she would have taken them off. She wandered off again and I wondered what she was doing and I asked her what was happening. She said well shes dressed now but still sitting in the chair. I said I need to get her out and she just said use the wheel chair. Again I said I couldn't do it on my own and she huffed and said there was no-one else and she was on her own on the ward. She eventually helped me but just put her hand on Mum's back and did nothing else. Absolutely ridiculous, she said she wasn't allowed to do anything else. Mum couldn't get up and she said that she had to be able to walk at least three steps otherwise she couldn't go home. I couldn't lift her, I tried and my back was killing me all the time she just pressed down on Mum's back. Another nurse finally came and between them they got Mum into the wheelchair not before banging her shins on it and again hurting Mum. Finally in the chair she wandered off again but I couldn't get the wheel chair to move as her feet were on the floor. There was a plate underneath the wheelchair which slid forward but you have to lift the feet up and slide but I can't bend down anymore. She got all stroppy but eventually did it. I was left to find my way out of the hospital and then had to get Mum into my car which was a struggle on my own. What a useless system. This nurse was doing nothing, she wasn't busy at all and it would have taken just 5 mins to get Mum out of the ward and free up a bed, instead of that she was obstructive and lazy and took me 30 mins to collect Mum. I found out that no T3 was given to Mum despite carers advising them and even giving them her dosset box and blister pack. I got Mum home and the carers put her to bed but put her on the commode to try and get the stickers off but failed to say that Mum could go to the toilet, they then just put her to bed without asking if she had been. She isn't incontinent just that they use a nappy just in case and use it as a lazy way out. So half an hour later Mum got up, they didnt put her zimmer frame by her bed and she walked to the bathroom. My brother had to go round and sort her out as he lives nearby and whilst cleaning her found an elastoplast sticking over her bottom hole stopping her from pooing. Oh my, he was so good, trying to get it off and couldn't so he had to leave it there all night. Carers arrived this morning and because Mum was tired and she said her neck was stiff they called an ambulance......OMG....nooooo.......I rushed over there thinking I couldn't go through all that again and gave Mum's neck a massage as she slept crooked and she was fine, they checked her bottom and pulled off the elastoplast and they had no idea why that had been put there. So I spent most of the day at Mum's, feeding and watering her, gave her T3 and she is so much better. People seem to be ruled by regulations and not their thinking anymore. I have found a supplement purposely for dementia all in one tablet, so where I was trying to give in separate tablets its all in one which makes it much easier to try and put it in the dosset box, I have hope and anything is worth a try. They were amazed in the hospital how good her blood pressure was and she is on no medication, just one blood thinner and levothyroxine and T3 and cranberry for UTI prevention. Not bad for a 94 year old. Thank you for all your comments, I shall be seeing my MP at a local surgery about this and take the paperwork, shes female so might listen.
OMG!! You must now be feeling drained! This so reminds me of when I was looking after my poor dad! I'm so sorry for you ~ the stress! I'm so glad she's now back home and has her proper meds.
I would report this just as you have written it here ~ what a disgusting way to treat a very elderly lady😔. I'm afraid I have had to witness similar treatment and live through it. Please take care of yourself too, and let us know how things go. 🌻🌻🌻🌻 xx
An update. Mum is at home, she has been walking around on her own, eating and drinking well and back on her T3 dosage. But one positive, she has had a physio assessment and he did a risk assessment for the carers to take her for a walk. I have been pressing for this for over a year and fobbed off by the doctors saying the dementia causes it, I don't believe that, and I shall stand up to them for Mum, she would have something to say to them. She was a nurse many moons ago and left because of other nurses attitudes towards the patients. How right she was even 70 years ago. I am so thankful to be back in my daily routine, till next time.......I will contact my MP as I don't want this to happen to me or my family. Thank you for all your comments, it shows the problems we have when admitted to hospital.
I'm so glad to hear your mother is at home and back into her routine, and has her all important meds. I hope she now gets better treatment all round ~ let's hope she never has to go back there.🙏 I think you're doing the right thing re MP ~ the more this awful treatment is publicised the better👍. xx
Just another quick update, Mum's speech has gone back to normal, no more slurring and she has had visits from physios and occupational therapists and she is getting stronger despite them saying its the dementia and she won't get better. I have told them that's nonsense and thinking that way is wrong.
Update - Mum is now up and walking around with her zimmer frame. Her slurred speech is back to normal. The carers were giving her commands ie put your hand here, put your other hand here, put your chin on your chest, lean forward, press up with your legs.....oh my, I have battled but today hooray a carer actually said to Mum why don't you get up and sit on your commode, she got up straight away and sat on commode. They don't give her the full picture of what they want her to do, its broken down into sections so she doesn't know what they want her to do. At last I have my Mum back after meetings with social worker, occup therapist, physio. Thank you for your support.
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