Itās been a while since Iāve posted mainly because Iāve felt quite well. And apart from my doctors having an issue with my TSH being suppressed Iāve been able to manage.
But Iāve had a call today from my doctors to book a liothyronine review for Thursday morning. And now Iām panicking because before my endocrinologist added that to my levothyroxine 11 years ago I felt really ill both physically and mentally and had no quality of life.
The receptionist couldnāt tell me why I need a review (Iāve never had one before) but I checked my online GP account and found the questionnaire they will go through Thursday.
I was diagnosed with ADHD a few years ago and a lot of the questions would be a yes ie forgetfulness, being clumsy, Iām assuming if I answer honestly whether I mention itās my adhd or not it will be assumed itās thyroid related and be used as a reason to remove T3?
Any advice gratefully received! š
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PinkBear
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PinkBear, since the Questionnaire is seriously lacking in questions why not use the TUK questionnaire which is considerably longer. I occasionally refer to it when I need to remind myself how far I have come on my thyroid journey.
Suggest you make some notes of pertinent history to take with you. They don't read your old notes, so you have to tell them how you got to where you are. My T4 was slowly being removed, because I refuse to stop T3. Apparently I'm going to get osteoporosis and have a heart attack.I was being sent to yet another endo, until I pointed out the last one had refused to see me because I buy my own T3, and had just written a scathing letter about someone else in response to the GP request (none of the details matched me!)
The one before that, which was only in 2019, had said to leave me alone as I clearly understood what I was doing and felt well.
Going back to when I started treatment it was an NHS endo who had prescribed T3, because T4 alone didn't cut it for me. I hadn't asked for it, I'd never heard of it, but it had been revolutionary.
This is all in my records, but came as a surprise to her.
The inevitable tears helped to convince her I was depressed, and the potted history showed that I needed both T3 &T4.
I got half my T4 back there and then, and the rest back a couple of months ago. The depression has gone!
Aw Iām so glad youāve managed to sort it out and are feeling better now! I had three years of just T4 treatment when first diagnosed and had the same experience on it as you, felt absolutely dreadful but since T3 was added by my endocrinologist back in 2013 Iāve felt so much better so Iām really hoping it will be ok I had my phone appointment today and went into detail the difference T3 has made to me and what I was like before, the above questionnaire was filled in which will be sent to endocrinology and they will either say carry on, or want to review me in clinic so Iām keeping my fingers crossed š¤š» x
It is horrible that feeling inside when one gets a letter from one's GP/Endo to review liothyronine medication. I've just been through this. If there is any hint this is about removing your Liothyronine be clear with them that you feel better on your medication as it is and that you have no desire to return to previous years of feeling unwell and reduced quality of life. Let them tell you all the alleged downsides of the medications, but then tell them it is your choice to continue on the meds as they are. It is your right to have your health choices listened to and accepted, that you are aware of the alleged risks, but being able to live a life rather than struggle undermedicated is not a choice you are willing to take. Good luck!
Thank you! I went into detail all of which was put onto the questionnaire, Iāve just got to wait for a response from the endocrinologist who prescribed it to me back in 2013 now, Iām keeping my fingers crossed and going to try not to worry about it! Thankfully I no mention of side effects, I usually get warned about heart disease and osteoporosis every thyroid function test due to my suppressed TSH and Iāve always said Iād rather have quality of life.
I am on monotherapy, but even so, as in the past I was asked to trial a reduction in meds, to which I agreed. I have a finger monitor for pulse and a quality thermometer. In less than two weeks, my pulse was at 55, too low for me usually 65. Started getting tired, brain fog, moody, etc, all recorded, so rang them up and requested to return to previous dose, which was agreed to. I believe I am on the cusp, not a sweet point, but just enough meds to keep me well enough. So, yes I still have them, but I could do without the stress from the NHS. Hope you too get a good outcome.
My experience with T3 liothyronine is somewhat unusual, but for whatever it's worth -
I had taken T4 levothyroxine alone for many years (since the late 1990's), but kept feeling exhausted, like I'd been run over by a truck. Around 2003, in an issue of The People's Pharmacy newsletter (since updated), I first learned that T4 levothyroxine, the inactive form of the thyroid hormone, has to lose an iodine atom to convert to T3 liothyronine, the active form of the thyroid hormone. In some patients, including myself, the conversion process doesn't work properly. I asked my then-endocrinologist if I could trial T3 (Cynomel in France; Cytomel in the US) only, and she agreed. I then searched "dosing T3" on the internet, and came upon Paul Robinson's painstaking research into the workings of the thyroid hormone (see paulrobinsonthyroid.com, and his excellent books). Sure enough, I began to feel alot better on a T3 only regimen. But being a serious, well-trained physician, my endocrinologist asked her colleagues what they thought about what I was doing. They were appalled, and she didn't feel that in all good conscience, she could continue to prescribe it to me.
For awhile, Sanofi-Aventis was exporting Cynomel to Israel, where I live; several years ago, there was a supply problem, and I believe it is still unavailable here. The Greek version is tiny, and prevents me from "split dosing," so in the end, I began obtaining Cytomel from a pharmacy in the US that I knew about in another context. I later found two other doctors in our health care system who agreed to write prescriptions for me. As an aside, I support the cogent advice about vitamin supplementation for thyroid patients provided by administrators and others on this website.
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