Good News- but what should I do now?

Marfit

Having managed to get my thyroxine raised to 75 mcgs after only having 50 mcgs for ten years, my TSH reading has gone from 4.08 to 1.7 in six weeks.( range 0.3- 5.5 )

I'm delighted and feeling more alert and clear headed,though still have muscular aches.

A recent myalgia blood test came back normal.

I am wondering if I should still ask for T4 and T3 testing with ranges to get a complete picture as I only have TSH testing and did establish with the nurse who took my blood at the hospital that they do both T4 and T3 there on NHS.. I have an appointment with my GP on Monday to discuss any further action.

Can someone advise me?

[nostoneunturned]

Doctors who "treat" only by the TSH just do not know anything about how to go about treating hypothyroidism. The 50mcg you were on for ten years is just a standard starting dose. It is good that your TSH has come down - if only to a level at which most here would feel ill, as 1.0 and under is better. Having the FT4 and FT3 would certainly help understanding of what is going on, doubtful if the expensive FT3 will be done though. FT4 lot cheaper so probably will be done if you can get GP to understand why It would benefit you to know just where you are in the ranges

Dr Antony Toft's book, Understanding thyroid disorders, about £5 from Amazon, is a pretty good starter guide. See P88 for judging the correct dose of thyroxine. Your GP should not argue with Dr Toft's words as he is a past President of the British Thyroid Association P 46 might be useful also.

[Hidden in reply to nostoneunturned]

Marfit

Thanks for your help...I did get Dr Toft's book in my pharmacy the other day which is below my surgery so hopefully it will spur me on for further requests to my GP.

Why do we all have to feel like we're walking on hot coals all the time while seeking solutions to thyroid problems? I have been continually told my thyroid is normal.

When I think of all the years I was on a starter dose without any knowledge I could cry,but have to look forward and not back!

How lucky we are now to get help from people who really care.

[nostoneunturned in reply to Hidden]

Just think what it was like before the internet! Please do get copies of any blood tests, do not feel you are "walking on hot coals" asking for them, but looks as though you have cleared that hurdle.

Like your difficulties, I (and just about everyone else here) had to fight for diagnosis; if female, fight against misogynistic prejudice (I could write a book on that!) fight for proper informed treatment.

But when life deals you lemons, make lemonade. Think of how you will be able to help others Look what you know already - never accept a doctor saying that word "normal"; can persuade GP with the authority of Dr Toft's words.

Looking forward to your posting of "What happened next".

[Hidden in reply to nostoneunturned]

Marfit,

Thanks for your encouragement I will keep you informed.

When I first discovered this support group I was quite confused by all that I was reading,but am now gradually gaining information and confidence and if in future I am in a position to help anyone else I will be more than happy to.

Have a good Weekend.

[PinkNinja in reply to nostoneunturned]

It's also published in association with the BMA, so even more reason for your GP not to argue

[nostoneunturned in reply to PinkNinja]

Thanks, Carolyn, must remember to make that valuable point in future.

[cal1971]

I agree, if they test T3 as well, then make them! My Dr is still going on the TSH but at least I have had my results with ranges, and have gone from 50mcg of levo to 75 ( no improvement) and as from today 100mcg. I too was on 50mcg for 12 years and have only just started on the road to sorting things out! Best of luck.

[Hidden in reply to cal1971]

Thanks cal,

I'm hoping to get a further increase to 100 mcgs as well and will pursue further blood tests too.I hope your raised dosage helps you.Let's hope we all get to where we want to be eventually..........have a good weekend.

Marfit