Elderly Mum Taking T3 - Withdrawn by Brighton Hospital Endocrinologist

[Dramlouie]

My 95 year old Mum admitted to hospital 3 weeks ago, was taking 100mcg alternating 75mcg T4 plus 25mcg T3 morning and 12.5mcg T3 afternoons and was stabilised and doing well. The RSCH hospital endocrinologist reduced the T4 to 75mcg and completely stopped her T3 she has been taking for years under a healthunlocked recommended NHS endocrinologist operating in the Surrey NHS area. He is also my endocrinologist I am seeing on the NHS and I am taking NDT. I have taken in the last letter from Mum's endocrinologist stating what she is taking and her private prescription but to no avail. Mum has now been moved to a rehabilitation centre and I have just seen the doctor and he said that he can't go against the hospital endocrinologist and give T3. I have asked if I can give it to her but was told that I couldn't do that. I have actually been giving Mum her 100mcg tablet every morning apart from a few days when she was being moved and I had an op. She wakes up every afternoon and they have said there is a difference in her but of course when I visit in the morning and give her the tablet she is so tired and down in mood, she refuses her breakfast. But by lunch time she is awake and hungry. I can't tell them I am giving her T3 but there is such a difference and they tell me how much better she is in the afternoons. She is still underdosed but better than nothing. I read a post that Brighton is very bad for T3, they are totally against it, no matter what I say they won't listen. Any ideas please, Mum is well but is suffering from her dementia and low T3 is worsening her symptoms. Having to fight for help for Mum, she would be left in bed, curled up, unfed, cup of tea left out of reach, water empty, freezing with just one sheet on her, black and blue from blood tests which broke a vein, underdosed T3. They even give the levothyroxine with food!

[m7-cola]

This sounds like a total nightmare for both you and your mother. It’s a blessing that you are able to ‘smuggle in’ her proper medication. If you can continue with this arrangement so much the better. I don’t think it’s worth trying to fight the system just now as doing so will merely exhaust you mentally, emotionally and physically: without guaranteeing success. I wish you well.

[MaisieGray]

I'm sorry to hear of the shocking treatment of your Mum; and having had my own T3 summarily withdrawn at the same time as having my Levo reduced from 125 mcg to 75 mcg, I absolutely understand how that might be affecting her.

Regarding withdrawal of liothyronine, the latest version of the RMOC guidelines for prescribing liothyronine variously states:

Individuals currently prescribed liothyronine for hypothyroidism are to be referred to a consultant NHS endocrinologist to consider transition to levothyroxine through a trial titration where clinically appropriate. ..............

The abrupt withdrawal of liothyronine therapy from patients who have been stabilised on treatment for hypothyroidism is inappropriate.

There is no defined conversion factor, and conversion of patients from liothyronine to levothyroxine monotherapy will require a reduction in the dose of liothyronine and an increase in levothyroxine.

The withdrawal of liothyronine should occur gradually in line with NHS consultant endocrinologist recommendations, and may take many months to complete.

The guidelines also provide for patients continuing with Liothyronine (where they've jumped over the correct hurdles of course), so if you aren't familiar with the document, it would be worth checking it out.

sps.nhs.uk/wp-content/uploa...

Meanwhile you may have to make a formal complaint, to have the T3 reinstated due to them having breached the guidelines in terms of how it should be withdrawn, and to argue whether it should have been withdrawn in any case.

[Dramlouie in reply to MaisieGray]

So very interesting, got some backup now, thank you for that. It says withdraw liothyronine gradually! I am definately making a complaint tomorrow.

[Hennerton]

I think you should contact the PALS office in the hospital. This is a Patient Advisory and Liaison Service. You can also make an official complaint through them but visit them as soon as possible and explain what is happening. They may be able to help with the T3 issue and can definitely give good advice. It is an NHS service, by the way and my daughter has used them to good effect. I hope your mother gets the help she needs.

[MissGrace]

Agree with Hennerton, contact PALS and complain like hell. Not only did the idiot at the hospital summarily withdraw her T3, he also reduced her T4. What on earth could be the reasoning behind that other than to make her ill?

Is there any way you can get your endo to intervene? Could they make some form of contact? Could you insist she is seen and assessed by him? I honestly would speak to the doctor at the rehab place again, write down (in front of him) all the replies he gives to you about not giving her T3 and tell him you will hold him personally responsible for her demise and will be contacting the media about what is happening. And then I would. I really would. I’d even try contacting a solicitor. I think the way old people in this country are treated - and euthanised in my opinion - is appalling.

Keep fighting - I’m sure you will - your mum is a fighter to have got this far and I’m sure she instilled that in you too. And keep feeding her that T3! My heart goes out to you. I send you and your lovely mum lots of love and best wishes. x🤸🏿‍♀️🥛

[Milpol]

My heart goes out to you too. It’s absolutely disgusting. What is happening to this country!

I would continue to give her the T3 you’re ‘ smuggling ‘ in.

She’s 95 for heavens sake, at least if you know it’s helping to give her a decent quality of life , then continue.

The Endo there obviously knows nothing!

I wish you and your mum the best.

[Dramlouie]

I visited Mum yesterday, and was told that she was having personal care. the nurse came out and left the curtain ajar and I saw her leg, oh my, black and covered in oozing sores. I haven't been told about this, her legs were fine when she went into hospital. I wondered why the physio hasn't done anything, she's just been left in bed with her leg covered. I couldn't understand why I was told that she has complex needs, no more than she has been receiving for the last few years. The back of her hand had lost the bandage today and it was black with a nasty open sore on that. Its where they keep giving her blood tests. I am shocked that she is in such a state. i wondered why they said they were giving her paracetamol!

[Dramlouie]

I should like to give an update on my Mum's progress...AMAZING INCREDIBLE!

I visited Mum yesterday and instead of finding her in bed, curled up and depressed, there she was sitting up in her chair, a big smile on her face and a lovely greeting. Oh my, the difference was huge. I couldn't believe it so I asked the nurse and she told me that they had started giving her T3 as prescribed by her usual endocrinologist. I knew nothing of this and I was stunned that all my pressure on them had finally worked after weeks of no T3. Mum was chatty and you wouldn't know that she had dementia.

Today I visited Mum and again a big smile and wanted me to take her into the garden. She came alive, we had wild blackberries, hot chocolate and chocolate biscuits and sat in the sun for over an hour. She hasn't seen the outside world for many months now. While we were pondering our happy holidays we had the nurse came out to give her the afternoon T3. Oh my, considering her doctor gave her end of life and told me to prepare myself and cancelled her antibiotics, my Mum would not be here now.

It is proof of how T3 liothyronine can have such a drastic effect on mood, physical wellbeing etc. I am going to make an official complaint as this sudden stopping of T3 which is against the guidelines is still happening. I will also go to her MP, we need to fight this. Thank you for all your support and the encouragement to give Mum her T3 everyday which was a struggle but most days I managed it. It is now being given to Mum at the correct timings and an hour before food and twice a day. I only managed it once a day and usually just before lunch but it was better than nothing and of course I never saw the change in Mum.

[SeasideSusie Remembering in reply to Dramlouie]

Dramlouie, I am thrilled beyond words to read your latest post. What a wonderful change in your Mum and I don't like to think how things would be if you hadn't persisted .

You have proved a point and I hope everyone concerned takes notice of the change in your Mum and takes it all on board.

Please let us know how you get on with your complaint and seeing her MP.

All good wishes to your Mum and I hope she is home again soon, and well done you, she is lucky to have you

[Valarian in reply to Dramlouie]

You sound so happy in this post Dramlouie, and no wonder. So glad your mother got the treatment she needs - but this is really scary, what about people in a similar position who don’t have family to stick up for them?

[Dramlouie]

I do have photos as proof of improvement if anyone needs them

[NWA6]

This was an appalling story!! I’m so happy that there has been a turn around but I’d still be so angry. You are an amazing daughter to be so tenacious! Well done 🤗

[Dramlouie]

I think we all need to prepare a contingency plan in case we end up in hospital, maybe write a letter of wishes, tell friends and family to contact your normal endocrinologist, maybe someone will come up with a few ideas here. My brother doesn't take me seriously and will still laugh at me and dismiss what has happened to Mum as due to something else. I only really know as I am also being hypothyroid and learning from this wonderful website otherwise I would be just as ignorant as most doctors. Mum has gone from being a vegetable on a dementia ward and shouting at nurses to leave her alone to my calm, mild, caring, thoughtful, grateful Mum whose only signs of dementia is the loss of part of her short term memory and being on a normal ward. It is scary, how many people on the dementia ward are like us and hypothyroid!! x

[m7-cola in reply to Dramlouie]

I am delighted that things are improving for your mum. She is fortunate to have such a wise, caring and resourceful daughter! I totally agree that all of us need to ensure we get our vital medication when isolated in hospital. I am terrified of being marooned and helpless in similar circumstances.