Thyroxine isn't working for me, and doctors won... - Thyroid UK

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Thyroxine isn't working for me, and doctors won't help!!

Scotlynnie profile image
6 Replies

Looking for some help!! I have been on levothyroxine between 100mcg to 125mcg for 14 years and this past year I have put on a stone in weight and with all the under active symptoms I can think of including unable to eat, sickness, sluggish bowels and constipation. Doctor will not test my T3 levels as we have suppressed my TSH due to 3 miscarriages, and according to them I'm fine. I have asked to be put on liothyronine but I would have to pay for it myself, which I'm happy with but any help would be appreciated as I'm a new member.. Many thanks

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Scotlynnie
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SeasideSusie profile image
SeasideSusieRemembering

Scotlynnie You need to have your FT3 tested before considering taking T3. Are you saying that your GP is happy for you to buy your own T3 and for you to take it but not test you? If so that's very negligent of him. How can he possibly know what dose you need and how to adjust your levo if he doesn't test???

You can always get it done privately through Blue Horizon, and if you do that you'd be well advised to take the opportunity of testing your vitamins and minerals at the same time because optimal levels are important for thyroid hormone to work properly bluehorizonmedicals.co.uk/T...

Scotlynnie profile image
Scotlynnie in reply to SeasideSusie

Thanks for the reply seaside suzie, I asked for her to test my T3 her answer was "I can ask to get it done but the chances are they will not do it". She has another patient she managed to get T3 tested once and the Endocrinologist has said they will not test again for T3, she said this patient is now on T3 and doing well. I would need to get it done privately because basically she doesn't want to know, I had the same talk with her 2 years ago after I asked her if I was to up my dosage after finding out I was 4 weeks pregnant and was told no, even though I told her it was recommended to raise my thyroxine immediately once you find out you were pregnant. I had to wait until I was 8 weeks pregnant to get my bloods done and they told me then to up 25mcg immediately. I miscarried at 13 weeks and no explanation as to why the feutus was only at a stage of 7 weeks, I blame my thyroid. 5 years of fighting with NHS and trying to get an answer and still I'm in limbo and now I'm too old to have kids have left me annoyed and wanting my health back..

SeasideSusie profile image
SeasideSusieRemembering in reply to Scotlynnie

You think you've heard it all and then you read something like this. I'm appalled at how you were mismanaged when you found out you were pregnant and so very sorry for your loss. Unforgivable comes to mind, I'm not sure I could even be civil with my doctor of that had happened to me.

If you want to look into adding T3 then get the Blue Horizon test I linked to, it's easy to do and the results are back in a couple of days. Make a new thread with the results (include the reference ranges) and members can comment.

Scotlynnie profile image
Scotlynnie

That's a shortened version of being treated so badly. I will get a kit ordered and update you with the results. Thanks👍🏻

lauramay36 profile image
lauramay36

I have experienced this same problem my doctor is not interested in testing me and I also miscarried 3 times and wasn't even refered to a gynecologist. The end result is that I got sterilised to save me from more heart break and I'm piling on weight although I don't have a bad eating habit. I am at a stage now where I don't know what to do I can't have the children I wanted and the weight gain / heart ache is ruining my life.

Scotlynnie profile image
Scotlynnie

Just thought I'd give you an update on what's been happening. I have asked the doctor to run more bloods and she said she would ask for T3 levels to be checked.. Received a phone call from the surgery today to say they won't check my T3 levels (no surprise) but they want me to stop taking 125mcg levothyroxine and reduce to 100mcg as they say my TSH is too low.

TSH - 0.08

Free T4 - 26.9

Still have same symptoms as before including hairloss, fatigue, aching joints, slurred speech at times, brain fog, forgetfulness, slow digestive system which caused me bloating, sickness, constipation. Doctor has given me anti sickness tablets (I probably eat less than a person that's got a gastric band) yet I'm still gaining weight...

I shall be moving to a new doctors surgery shortly, had enough!! I shall be ordering a testing kit privately as I can longer handle the lack of care for my illness from any health professional... Anyone know what free t4 levels should be at with a suppressed TSH. As I really don't I'm converting thyroxine to T3.

Not really any further on and I'm at my wits end with feeling so bad.

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