Best written info on why we need FT3/FT4 tests over TSH please?

[Gillybean1]

Ive just had another aaarrrhh session on the phone with the Biochemistry team of the NHS hospital where i went for my FT3/FT4 test this morning. The covering note on the form from my GP stating Hashimoto's, on Armour, needs regular FT3/FT4 check to adjust medication ,plus for F/U consultation with endochrine.

This was written in because 5 previous times the request had been ignored and only TSH done.

This is the second time i have rung direct to the biochemistry dept to be told i dont need them and even more alarming to be told T1 and T2 dont exist........heaven help us.

So, now im calming down and thinking positively, the best i can do is post out to ALL in the biochemistry the most up to date and concisely written piece on why we need FT3/FT4 and i am hoping you lovely folk can advise me please. I reckon a medically endorsed piece would probably be better recieved.

All good wishes, feeling calmer now, very glad you are here it is so so frustrating. G.

[Greenwall]

Hi Gillybean1

I've just googled and found: tpauk.com/main/article/t2-s...

thyca.org/pap-fol/more/horm...

thyroiduk.org.uk/tuk/about_...

Hope they help.

[Gillybean1 in reply to Greenwall]

Many thanks Greenwall for your reply, i will put together a few articles and post them on...........the good old 'ripple effect'.

Every best wish G.

[helvella]

T2 and T1 might as well not exist.

I don't remember ever seeing a test for either of them - though researchers may be able to detect them.

Further, I am very sceptical whether the truly tiny possible T2 and/or T1 content of desiccated thyroid has any significance whatsoever.

[Gillybean1 in reply to helvella]

Hi Helvella,

I understood that we produce them too, albeit in tiny amounts, i saw a medical paper on it some time ago. I presumed they must be relevant or we wouldnt produce them at all.

No i havnt ever seen a test for them either, i was just shocked that the biochemist this morning knew nothing of Hashi's, Rt3, or much at all on the subject except Levo.

Every best wish G.

[helvella in reply to Gillybean1]

But they are almost exclusively produced when T3 is deiodinated, within cells, into T2, and on to T1. Very, very little comes from the thyroid.

We also have effectively no information as to how much, if any, can get from a desiccated thyroid tablet into the bloodstream, and beyond.

[Gillybean1 in reply to helvella]

Thank you for your reply, a bit more info i didnt know.

Every best wish G

[crimple]

gillybean I can understand your frustration as over the last 3 years I only had TSH tested by NHS.If it is very low (below range) they will test FT4. Never had FT3 test on NHS. I doubt the biochemistry dept teaches the lab techs what FT4 and FT3 are, never mind T2 and T1, which must surely be a figment of your imagination- I jest of course!

However over last 3 years I have been getting private tests through Blue Horizon, so my FT4 and FT3 show low.(Only just this week gathered together all my test results and worked out the problem- too stressed before!) My diagnosis- poor conversion of T4 to T3 which is what the cells in the body needs. (Haven't told GP as yet)

I almost had to fight to get an increase in T4 2 months ago (Tsh was high again) and don't feel much better. My next step is to get gene test D102 and probably try T3, but I also had RT3 test and result came back quite high in range. Doubt if many GP's have heard about RT3.

You will have seen on here that many folks with T3 scrips are now being denied the medication on grounds of cost! Being ever cynical, my take is- if they don't test T4 and T3 then you can't find out that T3 is what you really need and so they won't need to supply it!! Problem of costs solved in their eyes and just give the patient some anti depressants! Fighting to get answers and find the right treatment without help from NHS is enough to make anyone depressed.

Hope you manage to get the right tests done. You really shouldn't have to go private but I think it is a hidden agenda for NHS!

[Gillybean1 in reply to crimple]

Hi Crimple,

Thanks for your reply, yes its a struggle, i had an agreement with my GP (and the only 1 of 8 in the practice who believes TSH doesnt give the full picture) that if she could arrange for FT3/FT4 twice a year as requested by Endo that i would somehow manage the costs the rest of the year as im keen to see if the TPO's drop with the various suggestions of eliminations and additional supps, and of course NHS will not redo TPO's as "once youve got them, you will always have them" comment; not true, mine are going down with elimination of all grains and soya.

I just find it so frustrating, last years conversation with head of biochemistry at the hospital ended in me asking why she had the right to overide the request of an endochrinologist, and she said " because i know more ,and that you dont need these tests". When i pointed out that i didnt want them for my entertainment but that the consultant did and although i dont have a gene conversion problem, but that i most probably have a T3 uptake issue and that keeping the T3 in check/optimum would heal my gut and long term keep me out of their Gastro dept . So long term im trying to be less of a burden to the NHS. She fell silent and on that occassion said " i will do it this time".

She openly admitted it was down to cost which is very short sighted as we all know.

It really shouldnt have to be such an uphill struggle, im exhausted enough.

If i find out that these tests have not been actioned, i will make a formal complaint , as this will be the sixth time now.

I wish you all the best finding your 'balance' im sure you will have read Paul Robinsons take on T3 and bathing the cells.

Take care G.

[TupennyRush]

It may be that my area is different but until around a year ago I always had my tsh, ft3 and ft4 tested with no problems (except for GPS who were only reading rhe tsh result and were telling me that there wasn't anything wrong with my thyroid)

However around end of 2014/beginning of 2015 I had them refused as the lab decided that I only needed tsh. As I take ndt not particularly useful but my GP immediately sent me back to have the tests done again and I understand he wrote to the lab. I don't know what he said but I haven't had a problem since with the labs he's ordered (but they're only annual).

The NHS endo could never get the full labs done but given I had to Janet and John her in on why testing tsh only for someone with secondary hypo on ndt was a waste of time I gave up and managed to get myself discharged from the NHS endo clinic last December.

BTW - don't get excited. I get ndt on a private prescription as it's not available on the NHS in my area....

[Gillybean1]

Many thanks Eljii for your reply. Ive read through once but need two or three goes to get it to sink in !! And up to date info to pass on.

Best wishes G.

[Gillybean1]

Hee Hee, love the 'Janet and John 'quip TuppenyRush. Yes its baffling this decision of will they wont they process the tests, how much is paid by our surgery and how much is paid by the hospital. My Endo openly admitted that he couldnt get his request actioned within his own hospital, beggars belief because when you go for your F/U 4mths on he has nothing to work with. He offered no solution, so what chance do we have.

I have just heard from the lovely receptionist at the GP that my tests have been done, no figures as yet, but that my TSH is well low, and FT3/FT4 in their range and that their is concerns re TSH................. Janet and John ?

Something still needs tweaking because im freezing with the heat on. Will post figures when known.

Im not certain but i think NDT may be available on private prescription from my GP but at a designated Pharmacy in the area. Until last year she had never heard of it (too young to have prescribed pre 1987) until i mention i was going to buy from USA, but this year we amalgamated to another big practice, and she has 4 other patients already on Armour and doing very nicely, and now she has been updating her info on thyroid matters, conceding not everyone suits Levo.

Have a lovely weekend G.