Scared: Just need to post to get something off my... - Thyroid UK

Thyroid UK
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Just need to post to get something off my chest.

Just recently I decided to trial T4 alone because of difficulties sourcing that is becoming a bigger problem. 6 weeks I did , t4 , 16 . T3, 3* .

I had very awful bowel probs and weeing also. Both slowed down significantly. Before TT I had been catheterised for the same thing, it was awful .Had one in for several weeks.

Sleep was almost impossible because of hot flushes waking me even if I slept , every hour.

Palpatations ,as they used to be, making me sit down having done the slighted thing .

I know that an operation would be on the cards because of the effect on my lower bowel .

Well having had BH blood test 2 weeks ago , all resolved !!! At least good enough .! Even with this hot weather am having some sleep , usual 3am. So hot, waking me . But better than before.

As I get older I am sooooo scared for the future which that will hold with poor treatment if I am unable to get T3

I want a way out if that is to be my life in old age. Inadequate and poor treatment.

We need control of a dignified end . Sorry to bring this negative post but I am really scared 😞😞

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There are increasing numbers of endocrinologists who do recognise our need for T3, even if this often still means a private prescription for non UK T3 due to current ridiculous price

But then at least your medical need is recognised and on your medical record. Eventually, once the pricing issues are sorted everyone who has clinical need should get T3 prescribed on NHS. This is what we are campaigning for

Roughly where in UK are you? Thyroid UK has list of recommended thyroid specialists. Some prescribe T3.

Have you had DIO2 gene test? This can also help get need for T3 recognised assuming you test positive

in reply to SlowDragon

Thank you SD My GP is supportive and supplies a private script , for no charge , which I then get T3 from Germany. I have read recently that that source has become harder to use now, I used Greek suppliers for some months then had to switch. I find it increasing hard to sort out the process of getting it. I just get really befuddled.

My lovely GP is soon to retire and when I at first went to another one he said β€œno one needs T3” , so very concerned .

I keep hoping things will be sorted out. I did see my MP who is also a doctor. He took all details and said that I /we should get that which is needed.

It made no difference though , that was about a year ago .

I might add that I take 10 mcg of T3 which seems to help that which I complained of in my post.

I am in Somerset there was a prof in Bristol who had written about the need some have for T3 , very for it. Retired !!

The young ones seem less well trained in my eyes sadly

Would it be a good idea to have the gene test to help me in the future?

Thank you again

in reply to Gcart

One of our Advisers diogenes and his team have proved, through research, that many need T4/T3. He may be able to reassure you in some way. Their paper was approved.

Sorry bit confused by your post Gcart. A month ago you posted you had put yourself on a trial of levothyroxin ( could not find dose) and posted results for TSH at 0.68, FT4 at 16.8, and FT3 at 3. You could have tried upping your levothyroxin dose at that time- even seeing if the FT4 went over the range, and seeing if FT3 rose to halfway or above its range. But instead you had started 5 mcg of T3 from Germany. Today you seem to have posted the same blood result again, or is it a new test, if so with what medication for thyroid problems? Lots of your symptoms related to heart, sleep and gut have subsequently got a lot better. I presume you are worried about your low FT3 result ( although it is difficult to confirm it is low without ranges too), has it changed with German 5 mcg T3? Perhaps you need retesting having been on T3 for 6-8 weeks. I get T3 from Turkey without prescription, 100x25 mcg tablets for Β£21, so although it might be wrong that many of us have to source Thyroid meds outside the NHS from abroad , it need not be very costly.

in reply to Judithdalston

Hi yes same range as before. No ! I have been on more T4 in the past but never converted well enough and was advised to add T3 here, which had helped me.

I only trialled T4 alone because of the thought of not being able in the future to get it. Hoping that maybe things had improved with getting vits on board and sorted as best as I can.

When you’re older it gets harder to sort things 😏😞

in reply to Judithdalston

Better having restarted T3 2weeks ago . Not sure if that was clear .

Won’t worry about a blood test for a while as a result

I am not surprised that you ran into difficulty when changing to T4. Over the years your body has adapted to the treatment you have taken, and will not take kindly to drastic changes. It is important to maintain constancy as much as possible, and if changing, only slowly and in small steps, being ready to return if the changes make things worse.

Thanks everyone . We can but hope 😘

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