I am posting for my wife who is in hospital. She takes T3 (liothyrinine) as she is unable to convert T4. She normally has 200mcg per day but on medical advice due to heart problems she has had none for 4 days. She is now becoming vague and finding it difficult to clearly communicate. She could self medicate, T3, against hospital advice (or perhaps thyro gold) do you think she should she do so please, perhaps with a small dose?
Thanks
Just double checking is that 200 mcg of liothyronine daily? If so it is a very large dose.
Bower123,
Oh, how terribly worrying for you.
If this were me I would continue medicating my usual dose against hospital wishes and did so in 2021. However, it depends on the circumstances as to what route I would suggest to your wife.
My T3 dose is very small and cured my heart issues but T3 can also instigate heart issues if excess can not be used/excreted. Therefore, if these heart problems coincided with initiating T3 meds or a dose raise I would investigate further and perhaps reduce the dose as that is a large amount of T3.
DippyDame may come along to offer some thoughts. She has been on very high doses of t3 liothyronine in the past.
Cripes! I can't imagine that it is good for anyone to go from 200mcg to 0 overnight, I think your common sense and knowledge might have to intervene with this if you are watching the lack of T3 affect her yet they are doing nothing.... it's not something you can just go without, how do they not know this??
Thanks!
I was just looking back at her last results posted 2 months ago, it doesn't say how long after her last T3 dose it was taken but came in at fT3 8.03 with a comment from you saying that if she lowers her dose her brain stops working!
yes, it's surprising that her brain has recently stayed working for several days without any T3, but she is becoming very vague now.
I'm assuming she doesn't take any other thyroid medication.
Her fT3 of 8.03 is inconsistent with a dose of 200 mcg. it could be that her tablets are a bit duff, she misses some doses or she left a long time after her last dose before having the blood test. it is also possible she doesn't absorb the liothyronine very well but this is unlikely as liothyronine is rapidly absorbed. Does she have any gastrointestinal problems or had gut opterations? It's also possible other medications interfere with her liothyronine absorption. Do you know what medicines / supplements she is on?
In any event it is unwise to remain off thyroid hormone, her TSH will be zero and her pituitary will take much too long to recover. I would suggest she resumes some liothyronine but at a much lower dose, maybe something like 40 mcg daily (assuming she is taking no other thyroid tablets). This should be enough to give her normal metabolic funtion even if she doesn't feel well on it. Longer term there is the problem of finding a dose that makes her well but is not so high that it causes cardiac problems. I suspect this will be very difficult and will involve compromises.
I am NOT a doctor, I'm just going from my own experience when I needed high doses of liothyroine (105 mcg). Unfortunately doctors are dead against liothyronine, especially higher doses but they can't be bothered to try and find out why some people need such doses.
Sorry to hear this, it's a concern that those of us who self medicate share.
If it took 200mcg to resolve her symptoms then a small dose is unlikely to help.
It sounds as if she has a form of Thyroid Hormone Resistance which a supraphysiological dose overcomes.
Put very basically the large dose acts as a " battering ram" against the cell walls and pushes some of the dose into the cells where it reaches the nuclei, attaches to the T3 receptors, becomes active and can then fulfill it's function.
The remainder will remain inactive in the serum until it is metabolised and eventually excreted.
So long as the amount of T3 reaching the nuclei isn't in excess of the body's need the high dose should be safe
Low cellular T3 = poor health
For good health every cell in the body needs to be flooded with T3 by way of a constant and adequate supply.
The brain needs a lot of T3....if my cellular T3 level drops my cognitive function suffers.
Apologies if you know this already!
A low dose of Atenolol ( a beta blocker) can help to regulate heart rate when on high dose T3. I take 25mcg as a prophylactic....prescribed by my GP.
I'd suggest she needs to continue with her T3 dose....
This is a problem that concerns me too....I think I'd be self medicating so long as I had access to the tablets.
I doubt hospitals would be happy with this but it would be my health/life at stake!
However, Patient Autonomy exists and is argued to be a central tenant to the ethical argument within medical law. Glover states that patients should have the right to be allowed to make their own choices over what medical treatment they should receive. This allows for accountability and free will, with all the goods and burdens that it carries.
nursinganswers.net/essays/i...
It was an understanding GP who explained this to me after I started to self medicate....might be worth bearing in mind!
How long has she been taking 200mcg T3.....if for a number of months some of the dormant T3 receptors may have been reactivated by the high dose meaning she might cope on a lower dose.
My max dose was 212.5mcg, I now manage on 100mcg....we aim to take the lowest effective dose not the highest dose we can tolerate.
On high dose T3 we monitor dose by signs and symptoms.....tests are no longer very useful
I did at one point drop from 212.5mcg to 50mcg for 5 days then built up my dose again to 100mcg....I was experimenting! So, a brief big drop shouldn't cause a long term problem
It's tantemount to medical neglect that this situation arises and it's caused by lack of education, ignorance and laziness to learn!
I'm not medically trained this is based on my own research and experience. I can only share that, I'm not qualified to advise.....oh! and I'm aged 78!
Good luck....wishing you both the best.
The brain needs a lot of T3, but it does like to convert it's own. Have the hospital doctors not suggested a little levo to replace the T3 they've taken away? That might at least restore some of her cognitive powers. Then, when she leaves hospital, she can get back to taking her T3.
The heart also needs a lot of T3, so I cannot see the logic behind them stopping it completely. But, I suppose at my age, I should stop looking for logic where doctors are concerned! They have none!
You say she cannot convert T4, but she must have been converting some on levo mono-therapy or she would be dead. Just not enough to make her well, which is a problem a lot of people have. But, any port in a storm, I would have thought. Desperate situations call for desperate measures - oh, I'm full of platitudes! 
But, seriously, ask them to give her some levo, just for the time being. They like levo, so they should do that.
Thanks grey goose, the hospital phoned me last night to say they have now decided to start her on a small dose of T3 (20 or 30 mcg a day) but your thought about levo might be worth pursuing. Just to clarify, she has until now been only taking T3, not T4 at all. Thanks again
Yes, I know she's been on T3 mono-therapy, and in the last thread, I asked why? Just the fact that she's a poor converter is not a good reason to cut it out completely. I cut it out completely because it made me feel bad, but you don't say if it's the same for her.
Anyway, glad they've gone back to giving her some T3. If stopping it completely was some sort of experiment, it obviously failed badly!
Have just read through your last post on behalf of your wife, and I notice that none of the questions asked were answered. So, we're still pretty much in the dark as to what is going on.
Are you saying that she takes, and still is, taking 200 mcg of T4 every day but under hospital guidance has now stopped taking T3?
Hello Hand S, no she has previously been taking only T3, no T4. Thanks.
Thank you: I am so sorry to read of the problems you and your wife are encountering. I know how difficult it is to challenge clinical decisions and advocate for a relative. Could you ask to meet with the consultant and maybe take an advocate with you?
Wishing you the best of luck, and a good recovery for your wife.
Hello Bower. What a nightmare. I've recently been in hospital for an op. Usually I take full control of my meds and I sign a waiver saying I take liability!! I've never found the administration of drugs in hospital to be great. Eg serving thyroid drugs up with others at mealtimes!!
So yes she could resume her usual dose but she would need to protest and take liability. Frankly it's henious they've made her go cold turkey without any thyroid meds when she's poorly. What's their reasoning behind this???
I have to say cardiologists are very anti T3 prescriptions. Mine had a potential fit over my NDT Armour. We had many a long conversation about it.... Like an hour at a time..... to the degree he did not focus on my heart problem caused by treatment the NHS had prescribed in the first place. Thing to remember is cardiologist know about hearts, they know something about ft 4 & Ft3 (, more than most Endos know) but they will be very very anti T3. Your wife may have to stand her ground firmly.....
Many thanks everyone, I will be visiting her later so can share with her your responses then. Thanks!
I'm sure you will be keeping a close eye on your wife's condition....the body needs what it needs and if their token dose of 20 or 30mcg daily doesn't help then you may need to intervene.
If I drop below 75mcg I can barely function
The condition is hugely misunderstood....and that is shocking. I suffered increasingly for almost 50 years on rising doses of levo before I discovered why. In the interim I was offered diagnoses and treatments for a number of other ailments, to no avail...low cellular T3 has been the cause. Very few medics understand this....or want to know!
I'd suggest you keep a pack of T3 in your pocket or in your wife's handbag....but experience has turned me into a cynical maverick!!
I take 140 mcg t3 daily. Prof S Refetoff who found thyroid resistance back in 1970 says in a later paper that the fT3 level is usually about 8.3 pmol/l in people with thyroid resistance.
Also I’ve read that you should updose when ill or having an operation.
I hope everything is alright with your wife and that the 30-40 mcg tides her over till she can get back home.
linda96, Are you able to provide a link to the paper you mention here?
A more recent paper from Pappa and Refetoff
frontiersin.org/articles/10...
Resistance to Thyroid Hormone Beta: A Focused Review
Theodora Pappa and Samuel Refetoff
That's interesting....did you have the genetic test which establishes the relevant mutation in the beta T3 receptor responsible for that particular form of RTH.
I take it, like me, you have to self source the T3.
The genetic form of resistance to thyroid hormone (RTH) Sam Refetoff discovered presents with elevated fT3, fT4 and a non-suppressed TSH. During acute severe illness such as a heart attack or severe burns T3 levels, especially local levels are reduced. It is thought this is protective. Nobody knows whether this low T3 is protective or harmful vut it looks like it is protective at least in the acute stages. So, I would not take extra T3 in these circumstances as T3 is usually lowered.
I am prescribed T3 and have no clinical symptoms and feel my health is now normal
My daily dose is 30mcg T3 daily.
25mcg of T3 is approx to 100mcg of T4.
It took a long time for me to be diagnosed with hypothyroidism and levothyroxine (T4) caused awful palpitations which kept both me and my husband awake all night trying to reduce heart rate. I was also connected to the Heart Dept at the local hospital but they couldn't figure it out either what was the cause.
If your wife is still having symptoms - it could be that her dose is too high unless her body is resistant to the T3 . If she is resistant her large dose has not resolved her symptoms.
Mayber trial another T3 from a different company as it could be the fillers/binders in the T3 that may be causing symptoms.
There is now a number of T3s (liothyronine) in the NHS as before we were restricted to trial one or two.
I doubt very much that a ward doctor would know enough to understand the effects of T3, or anyone on the ward, for that matter. I would demand an urgent meeting with someone high up, to explain the situation, and if they refuse to do anything, take her tablets in with you and give her half her normal dose, give her a quarter, and leave the other quarter for her later. T3 is absorbed fast and peaks at around 6 hours. See how she feels the next day and take it from there.
For the hospital to give her nothing is cruel. Would they withdraw all insulin to a diabetic?
I take 30mcg T3, with 100mcg T4, both on NHS.I was in an NHS hospital in August for planned surgery on my feet. In every outpatient appointment, all pre-op appointments, anaesthetists, all staff on the ward knew nothing about T3. They did give me most of my doses from what I took in (and they'd locked away). But I got my husband to bring in some more so I could take it myself if needs be.
The whole situation is scary.
Has she tried NDT, such as Armour Thyroid or compounded porcine? These both have T4 & T3.
I was in the hospital (I'm in the USA) for an appendectomy in late October. I take T3, but not as much as your wife. The Hospitalist, who approves all the Rx's that the nurses request, would not approve my T3 dose. He told me that he had worked with the Endocrinology unit at Vanderbilt, Nashville, TN, during his residency, and saw lots of women having to be heart shocked back to life because of their T3 intake. He was a real stickler about this even after him visiting my room and having a discussion about T3 being a lifesaver for Thyroid patients. The hospital doesn't want to be sued by you if your wife happens to pass away during her stay if they give her the T3. I would talk to the Doctor that writes the script for your wife's T3 and have him/her make a case to the hospital. I wouldn't advise sneaking in the T3 for your wife in case it interferes with whatever they have connected to her drip line. Hope this helps.
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