Since having my t3 removed and Levothyroxine ramped up from 100 to 150 I have struggled to complete a full week at work. I suffer breathlessness and am now sleeping sitting up. My heart rate is all over the place. I’ve just visited my GP to be told “I can’t help you as there’s nothing else I can prescribe but we can do an ecg”.
I’m angry, frustrated and desperate. I’ve already paid for D102 test and am awaiting results. But I feel my health is being put at risk.
How long since T3 was withdrawn?
Have you arranged full Thyroid and vitamin testing for 8 weeks after?
Likely vitamin levels have dropped, unless supplementing to improve already
It has been an on off rollercoaster. My GP stopped it around April but reinstated temporarily after 3 months while awaiting CCG and consultant approval. CCG refused. Consultant withdrew T3 early September. Standard NHS bloods were drawn on Monday.
What was your dose of T4 and T3 when you were taking both? And what dose of T4 were/are you on since having T3 taken away?
I was originally on 100mcg but am now on 150.
How much T3 were you prescribed?
I used to have half of a 10mcg tablet daily. For about 15 years.
That’s just terrible to hear. I hope you get some good advice and support from some of the wise posters on this site.
Thank you.
Could you get your GP to write you (free) private prescriptions- then you can buy T3 from Germany. It could be a long term solution, or at least would work till you sort something out with your GP/endo.
thyroiduk.org/tuk/treatment...
Thank you, I’ll ask but they are adamant they can’t help. I’ve been advised I can see a private endo for a consultation regarding a prescription. It just seems so wrong.
What kind of doctors make you ill? They should be ashamed of themselves. What convinced my GP to write me private prescriptions was when I said the whole thing is political. The NHS/government won't buy T3 more cheaply, and there are no restrictions on how much can be charged for generic drugs in this country. He had no idea that T3 ws so cheap in other countries. (100 20mcg tablets: Germany, 31EUR, UK over £900.) It's happening to other drugs/hormones too. Good luck!
It is wrong but the powers that be just stick their heads in the sand. That's why there are well over 80,000 of us here struggling to feel better.
Good you've had a genetic test, it sounds as if you may not be adequately converting T4 to T3, the test will prove that....or not.
I have the DIO2 polymorphism and now self medicate...but it may help you get NHS T3 again. I'm not sure they should have withdrawn it after 15 years of successful treatment
The big increase in levo/T4 may be causing a build up of (unconverted) T4 ....possibly also making you feel unwell.
Good thyroid function requires optimum levels of Vit D, Vit B12, Folate and Ferritin - have those been tested?
Difficult to say more without blood test results (T4 and T3)
Your GP sounds clueless (most have poor understanding of thyroid function/treatment) can you see someone else?
He may not have answers but people here will ....so post results and ranges and someone will advise.
Take control and things can improve
Sorry this is a bit disjointed....lack of decent sleep tonight!
Good luck
DD
Thank you. I’m doing all I can to fight it. I appreciate the support and advice offered
Thank you. How do I convince them of that?
Just to say I think it's disgusting that they are depriving you of the tiny dose that kept you well for all those years. The system is so flawed. I know exactly what you mean about the breathlessness and sleeping sitting up 😥.
It's horrible and frightening ~ I have spent long periods at the hospital having tests, ECG etc., all to no avail. I need large doses of T3, (which they would never agree to) but to take that tiny bit of T3 from you, and rob you of your previous good health is nothing short of criminal 😡
I wish you the best of luck in regaining your prescription. For now, make sure all your vits/minerals (as recommended on here) are optimal, as they may well decline while you're not adequately medicated, and stressed out ~ your story is so sad. Please let us all know how it goes, and don't take no for an answer! 🍀 x
Thank you. So kind
Thank you
Blocked ears??
Hair is falling out, need help! 
Advice on test results
Am I being overmedicated on levothyroxine?
