caught up again with a GP lowering levo

[Gcart]

I was taking 5mcg plus 75 levo

Doing fine !!

TSH 0.02. ! Caught out not expecting blood test resulting in gp saying go down to 50mcg .

me , no thyroid .

In desperation to conform I dropped the 5mcg T3. I now feel unwell .

Mostly pain , muscle type pain everywhere .

Is there anyone doing that had symptoms of withdrawal or am is it purely down to incorrect dose .

Up the creak with no paddle. I am totally defected 😢😢😢.

Had the lecture about how it works .

usual quotes we are all familiar with .

Can’t go on with this

[BrownBella]

so sorry to hear that you’re not feeling too good, I’ve had similar problem, rah 4.9 so told to increase t3 which I pay for, increased then dropped to 0.02, but feeling well now told to drop again, GPS just don’t know how to treat hypothyroidism.

Good luck

[GlowCoach Administrator]

I would ask to go back to your previous dose, explain that the last test was unexpected and retest when you have notice and not taken meds etc for whatever pause time you need.

Doctors do this knee jerk reduce Levo/T3 thing but often its a one off result and no change in meds is necessary. Caught like this myself a while ago.

[SlowDragon Administrator]

Refuse to reduce dose

TSH is not a thyroid hormone

Get back on the dose you were well on

Wait 6-8 weeks then test early morning and last 2.5mcg of T3 8-12 hours before test

Get FULL Ft4 and Ft3 plus TSH tested together

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

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. "

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

[Gcart]

grateful for that NICE paper SD and support from others . Reading my post it gave me a laugh , I can assure you I am defeated , not defected!

Back to the ‘fight, again !! Not one of the 2 GP’s., Involved by pure chance, asked how I felt.

[Mlinde in reply to Gcart]

"Not one of the 2 GP’s., Involved by pure chance, asked how I felt."

They never do! In 14 years, I've never been asked what my symptoms are by any GP, 'Blood test' does it all eh. Well, the NHS has been trashed by this awful, reactionary government. Had your telephone 'diagnosis' yet?

[Zephyrbear]

This is precisely why so many of us resort to self- treatment… doctors, even endocrinologists in my experience haven’t the first clue about the thyroid! They treat the blood test rather than the patient sitting in front of them clearly unwell. I avoid them like the plague! Since the lockdowns, my only contact with the endo has been an annual phone call to ensure I get signed off for the next 12 months’ worth of T3. Even on the phone you get the feeling they haven’t got the time of day for you, so why should I? The only good endo I ever had was my first one who was a little more “old school”, who listened to me and prescribed me the T3 in the first place. He sadly retired a few years ago since when I’ve seen a continuous parade of ignorant numpties who couldn’t find their way out of a wet paper bag tbh!

[Gcart in reply to Zephyrbear]

same experience with trusted gp retiring 😢

Unfornately I get caught every time because of ongoing treatment for a hormone cancer snd it’s at these appointments they meddle u necessarily it’s not really connected . They Just can’t help spouting all the rubbish about how they know best !!

[serenfach]

I too had an unexpected blood test, having taken my thyroid meds 2hours before. GP dropped my T4 by half. I phoned and told him the results were skewed as the peak absorption happened at around 2 hours. He said it did not work like that. I told him not to reduce the dose, but he did anyway. So much for "working in partnership".

My results turned out to be within the ranges! I had another blood test yesterday, not taking the tablets as advised on here. It will be interesting to see the results...

[Gcart]

it helps a little to know it happens to others but it is such a shame for everyone !!

As said here just keep clear of doctors .