Gp advice.

[JBLOVELL]

Just been told by my GP to stop taking my levothyroxine and t3 because my tsh is suppressed! I said " couldn't I die?". She just came back silent. I hung up!

[helvella Administrator Thyroid UK]

Another GP who can't read past low TSH!

We've seen severely hyperthyroid patients here who have been largely ignored for extended periods. Which is dangerous.

Yet they pick up someone who, if I've read your results right, has not high FT4 and FT3 and they panic because of the TSH alone.

[shaws Administrator in reply to helvella]

It must be awful for many hypo patients - especially those who don't have internet connections - who may suffer unnecessarily?

[RickGrimes]

I'm so sorry, this is so frustrating I know. Someone will come along with some advice on speaking to the GP but for now I'll say vent on here rather than the GP. I lost my shit with the GP a couple of weeks ago when they changed my lio tablets to capsules. I tried explaining I didn't want to make the change at this moment in time as going through a Levo dose increase and want to keep all other variables the same. It makes no difference and is actually so draining and damaging in terms of one's stress levels.

[Jaydee1507 Administrator]

They really do go into panic mode when they see a suppressed TSH. If only they cared as much as an over range or TSH above 1!

You can accept responsibility for your test results, they are only guidelines and your needs and preferences should be taken into concideration.

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. "

[tattybogle]

well... i can see why they sometimes suggest it in patients who still feel terrible despite taking fairly large doses ~ mainly when they have run out of other ideas /got fed up with dealing with you / or are questioning the original diagnosis and wonder if there was any real need for you to be taking thyroid hormones in the first place.

But stopping such a large dose of Levo and T3 all at once ~ especially in someone who has had a more or less supressed TSH for at least 3 yrs~ is an idiotic idea if you ask me .

Even if there was nothing at all wrong with that persons thyroid before they started taking thyroid hormone ( eg they had been misdiagnosed).... it might take their TSH several months to come back up again enough to stimulate their own thyroid to make enough T4/T3 for them again after thye stopped taking T4/T3 ..and during this time they would likely suffer quite a lot.. it's a very big shock to the body to suddenly remove all replacement thyroid hormones all at once.

And if the person DID have a sound diagnosis of Autoimmune hypothyroidism and had already become hypothyroid before they started taking thyroid hormones.. then asking them to stop a significant sized dose of Levo plus T3 all at once is unlikely to end well for the patient.

Doses of thyroid hormone should be adjusted slowly and carefully, by as small amount as possible each time , to allow the body several months to get used to each small change ,,and accommodate itself to that change if it can.

Did you have a sound diagnosis of autoimmune hypothyroidism ?

What were your TSH / fT4 / TPOab results that led to your diagnosis and original Levo prescription. ?

But whether the original diagnois was sound or not .. if thyroid hormoen IS evert to be stopped for the purpose of 'wanting to see how you feel without it' .. it should be tapered off very very gradually to allow the body to try and adjust itself ... it should NOT be stopped all of a sudden especially when the TSH may take a long time to rise again due to being kept low for a prolonged time.

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it is perhaps worth bearing in mind that going 'up ' in doses of thyroid hormone has already been tried and hasn't helped you .

you've been of doses of up to 150mcg Levo + ? 50mcg T3 , ....or was it 37.5mcg T3 or 25mcg T3 ? ~ there was some confusion in your previous posts.

Your fT3 levels do seem to wander around for no apparent reason (assuming your tests were all consistently taken approx 12 hrs from last T3 dose /24 hrs from last levo ~ which you did say you had done correctly in all the results i looked at )

Given the confusion over your doses of T3 ...is it possible some of the 'times of last dose' were confused too ?... just checking.... as some of your variations in T3 level are pretty large.

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So 'stopping it all' is obviously just daft ... but it seems equally obvious that adding 'more 'T4/ T3 is not going to be the simple answer for you ~ because you developed clear symptoms of overmedication when you were on "150 Levo +whatever T3 was" .

So perhaps 'a bit less' MIGHT actually feel better for you (once you had given your body enough time to adjust to it.. a dose reduction would probably feel undermedicated and be a struggle to deal with for at least 5 weeks until the body adjusted ) .

How long is it since you last tried having a TSH anywhere near 1 ? or even 'in range' ?

some people on here DO feel better with T4 /T3 lower than others expect is needed to feel well .. not everyone needs high %'s ... and some people on here DO feel best when TSH is 1 ish .

MIGHT it be worth considering whether you spent enough time trying to feel ok at lower doses of Levo which didn't supress TSH , before you increased levo doses up so much that T4 was over range and looked at adding T3 to a slighly lower levo dose ?

you had only been diagnosed for ? about a year before that , so i don't think you can rule out the possibility that you got up to high doses without allowing the body time to make the best use of lower doses that didn't supress TSH so much. )

This is absolutely NOT a criticism ..just an observation from someone who now suspect's she may have made that mistake when i first started levothyroxine ....i had difficulties for 15 yrs on 150mcg levo ..but it was me who pushed the GP to prescribe at that level ...but i now wonder whether i may have actually done much better on 125mcg or 137.5mcg

My GP did suggest a reduction to 125mcg at the time , and i tried it for 3/4 weeks and felt utterly rubbish and undermedicated so i insisted it was not enough and put it back up to 150mcg and i stayed there for 15yrs .... but in the last few years i have had experiences that changed my view ... the first 5 weeks of even a sight dose reduction, i have felt undermedicated , but after that , how i feel has stabilise and i then improved very slowly and the improvements continued for many months afterwards .. on two occasions i have ended up eventually feeling better on a reduced dose once i've been on it for 4-6 months , even though on both occasions i was initially very certain i was undermedicated on that lower dose.

[JBLOVELL in reply to tattybogle]

Thank you so much for responding and I absolutely don't take it as a criticism. I very much appreciate all the advice. I have attached my blood results from when I was first diagnosed. I did start writing down increases and decreases but mislaid my notes!! I don't think I was ever on 50mcg of t3. I think at the highest it was 37.5mcg, but for a very short period. I wouldn't want to decrease at the moment, due to being very symptomatic. I'm awaiting a full panel to check my iron, because I think it may be low. It seems to be a fight for everything with my gp and I really don't have the energy.

First blood results

[tattybogle in reply to JBLOVELL]

Well .......there is NO question at all about the validity of your diagnosis then .... in my (highly unprofessional) opinion, any GP who suggested someone with that degree of hypothyroidism at diagnosis 'stop all levo and T3 all in one go' is .... erm ....trying to put them in a coma ?

There's no way i'd agree to follow that GP's suggestion if i were you .

( I wouldn't follow it if i were 'me' either, and i only had TSH 7 at diagnosis and my TT4 was still just in rage )

[JBLOVELL in reply to tattybogle]

At the time of diagnosis I actually felt like I was dying. I had had symptoms for around a year and the gp just treated the symptoms, not the cause. Think they panicked a bit when my bloods were finally taken.

[tattybogle in reply to JBLOVELL]

is the GP who suggested you stop everything actually aware if this history ?

( obviously they 'should' be ,..... but it's not safe to rely on it unless you've asked)

They need to answer some questions :

How long are they suggesting you stay off 'everything/ for ?

What is to stop you ending up the same state again ?

Who is taking responsibility for it when it happens ?

and what is the purpose if this little adventure down "catastrophy highway"

[tattybogle in reply to tattybogle]

"At the time of diagnosis I actually felt like I was dying. "

TSH >100 ........ fT4 < 1[10 -20]

Frankly , you were well on the way to it.

[JBLOVELL in reply to tattybogle]

This is the reason I am so grateful for the advice from everyone here.