the whole thyroid treatment is a joke

[Gcart]

3 GP appointment later with them trying to lower my dose because of a result when I had taken hormone a few hours earlier

Taking 75mcg plus 5mcg T3

Range in all tests

TSH. 0.27 - 4.2

T4. 12-22

T3. 3.1-6.8

first test that started it . Told to lower T4 to 50 mcg . (Over medicated)

TSH. 0.02

T4. 19.4

No ref to T3 even though it is clearly declared with GP

Not willing to do this I decided to drop T3 as a trial to check this myself . Usual warnings by GP!

Test with GP 6weeks later on T4 75. only

TSH. 0.28

T4 17.6

T3. 3.0. !

She agreed to test 👍

8.45am. I did usual recommended dosing .

Monitor my health next day 7am

TSH 0.33

T4 15.4

T3 2.7 !

constipated , boiling hot , can’t pass urine easily , chest pain , can’t walk more than a crawl , tearful .

I weep for myself and everyone here , treated with such astonishing ignorance!!

Message on phone to call surgery for routine telephone appointment !

Can’t face more from them and will work out how I navigate through this 😢😢😢

Remembering TT 6 years ago

[klr31]

I'm no longer on T3, only thyroxine, but I have an annual tussle with my surgery who want me to reduce my thyroxine. I was on 75/100mcg on alternate days, now on 75mcg. I have no symptoms of hyperthyroidism but my TSH is continually low since I took T3 years ago. I've come down about 75mcg with my thyroxine and no change in TSH.

Karen

[DippyDame in reply to klr31]

I don't know when/if medics will ever see the light and stop using TSH as a reliable marker....it is not, and science underlines this.

Until an Endocrinology Enlightenment this madness will rumble on and patients will continue to struggle.

I wouldn't call it a joke....in any shape or form

I guess your GPs worship at the alter of TSH

It reeks of medical neglect

[klr31 in reply to DippyDame]

NICE guidelines are sacrosanct apparently, never mind the patient! Yes, TSH is the be all and end all. When I tried to explain my situation they just revert to their speel.

Karen 

[arTistapple in reply to klr31]

Something is sacrosanct but it’s not NICE guidelines! It’s whomever is in charge of the local tribespeople.

[Charlie-Farley in reply to klr31]

Hi klr31

I would agree with arTistapple there is a lot of latitude in the NHS guidelines but the doctors are so poorly trained they have not the confidence to use it.

The first paragraph in the NICE (NHS) Thyroid Disease,Assessment and Management guidelines says : nice.org.uk/guidance/ng145

"Your responsibility The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

So in essence what this means is these are the guidelines but if they’re not working use your initiative.

Yeah………

That is why we have to read up and become our own health advocates.

Gcart just tagging you in as it’s your post. 😊👍

[Gcart in reply to DippyDame]

so many in the same boat , it’s such a fag !

[mrskiki in reply to DippyDame]

Its like someone just ripped out page 1 of the user guide and gave it to them so just keep trying that over and over with no acknowledgement that it's just the start point

[Gcart]

I’m back taking my dose as before and hoping to improve my quality of life that was trashed by this ‘experiment’

Hope GP’s will continue to issue the 75mcg Levo though . Until the phone call I don’t know what they are thinking about those last tests with the TSH still pretty low ☹️

Put that call off as long as possible

[Serendipitious]

My GP has simply gone ahead and reduced my levothyroxine from 100mcg to 75mcg because in his words it is poisoning me! Didn't ask me just said he's doing it. I'm still taking 100mcg but I will run out sooner than usual. I honestly dont know what I'll do as I feel awful on 75mcg.

[Charlie-Farley in reply to Serendipitious]

Hi Serendipitous

I cannot emphasise enough submit a written request - for a dose increase- explain your symptoms. If this is affecting your mental health discuss it in writing only in terms of onset as a result of under medication do not get fobbed off with antidepressants because they are undermedicating you and do not let this go.

Click on my face and you can go to my profile - my bio tells my story and all my posts are there and I have written about how I successfully got onto a full replacement dose of Levothyroxine, whilst in range and with a low TSH.

I have even anonymized my written reports that I submitted to my local surgery so people can see what I hit them with.

Sorry to say, but we have to read up on our own health issues these days in order to be our own health advocates. Doctors do not know what they are doing. It’s not their fault, it’s a systemic failing in terms of their training and breadth of remit.

Gcart 😊👍

[Serendipitious in reply to Charlie-Farley]

Charlie-Farley,

Appreciate the advice. I will give it a go I was just thinking of changing surgeries as I don’t like this particular GP anyway. Years ago he wanted me on statins and said I’d die of a heart attack if I didn’t 🙄 Obviously I didn’t give in to that.

Did you just write to the surgery itself or the CCG?

I’ve been researching and studying for years but there’s always something new thrown at us. Thanks for the tip.

[Charlie-Farley in reply to Serendipitious]

I just wrote reports and submitted a hard copy to reception a few days before telecon appointment with whichever doctor - all in my past posts 😉👍

The beauty of a hard copy is the reception will then upload it onto patient access and the doctor knows you have the original. Also you take control of the conversation. They have address your report directly and dare to refute your report and your rationale and that will go on record. If you have done your homework put in a few references and given a rational explanation there is no reason why you shouldn’t get your way.

Having a Telecon means you can have all your information spread over a table and you can keep up the pace with the conversation.

Much easier to do this than be in a doctors office sat next to the big desk trying to shuffle through bits of paper that you want to use for reference.

🤣👍

Gcart

[Gcart]

unbelievable , bet he didn’t ask you how you are .

Very sorry for your plight as I am for myself .