I'm Fuming. : OK so having had a blood test in... - Thyroid UK

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I'm Fuming.

Jones1969 profile image
13 Replies

OK so having had a blood test in January showing high TSH on 175 of levo, I went up to 200. I had started to feel improved went for another blood test on the 19th of this month. Blood draw was evening, I had taken levo in the morning, I had meant to take a half dose but habit kicked in. The results are here. A doctor, not the one, who ordered blood test including T3, has decided I'm over medicated and put me back to 175! I doubt he even looked at the last results. I want to cry, he hasn't talked to me, just sent a text telling me he was altering my prescription. My T3 is not high.

I need some help, I have booked a call with him tomorrow morning, I need to get organised so I don't just rant and nowhere. I don't want to go back to how I had been feeling, I still don't feel good just better.

Thank you in advance.

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Jones1969
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13 Replies
greygoose profile image
greygoose

Blood draw was evening, I had taken levo in the morning, I had meant to take a half dose but habit kicked in.

Well, that's the problem, isn't it, having the blood draw in the evening. The TSH is obviously not going to be as high as early morning.

But, taking half the dose wouldn't have changed anything. Don't think it would have had much effect on the FT4 and certainly wouldn't have had any effect on the TSH or FT3.

Was this doctor just looking at the TSH? That is so wrong! You're only over-medicated if your FT3 is over-range. Nothing to do with the TSH.

And, he should not have reduced your dose without first discussing it with you. He is there to advise you, not dictate to you. He is wrong here on so many counts.

Jones1969 profile image
Jones1969 in reply to greygoose

Is just started to feel improved, on 175mcg I had TSH over range, no FT3 that time. I'm still in the lower half of FT3 range now, if I'm looking at it right, but definitely not high. I'm so angry, and upset.

greygoose profile image
greygoose in reply to Jones1969

I can imagine you would be, yes! These doctors really do make you want to punch them in the face. Ignorant so-and-sos!

greygoose profile image
greygoose in reply to greygoose

Tell him you need your FT4 that much over-range in order to get enough T3 to make you well, because you're a poor converter. But, if he wants to reduce it, he could always prescribe some T3 to make up for it.

Jones1969 profile image
Jones1969

I didn't as it was an evening draw. Only one I could get without waiting another 2 weeks. I take my meds in the morning.

tattybogle profile image
tattybogle

even if you have to wait 5 weeks for an appointment.... it' worth insisting on a blood draw in the early morning in future. that way you might avoid a repeat of this unwanted reduction..

But as for the immediate problem, i suggest you request call back from GP to discuss.

point out that you know TSH would naturally have been low at that time of day as it has a diurnal rhythm, so most probably it would have been in range at an AM appointment.

That deals with the under range TSH .

The FT4 being a little over range is not so easy to explain away, but you could say that you understand their concerns about long term risks for heart and bones from 'overmedication', and you are aware of the signs of overmedication and would of course reduce of you felt any of them , but since you were feeling so much better on 200, you would really like to try staying on that dose for 3 months longer to see if you continue to feel as good and then retest.

And then obviously get an AM test 24hrs from last Levo dose. . no matter how long you have to wait for the blood draw. (i just say i can't come at any other time because of work)

Or if they won't agree to that approach you could suggest you meet them half way and only reduce by 12.5 rather than 25 (since you already know you didn't feel good on 175 , and after all your fT4 is only very slightly over range so a 12.5 reduction may be enough to get fT4 within range)

My GP disagreed with my current dose , but we had a 'discussion' and i convinced him i understood 'the risks' so he's ley me stay on it , but put a note on my records to say i understand the risks , to cover his back , which is fair enough as he'd be held responsible if he 'overmedicated' me.

Jones1969 profile image
Jones1969 in reply to tattybogle

I have no thyroid and FT3 is not even 50% through range. I doubt he even looked at it! But yes, won't do a draw in the evening again.

tattybogle profile image
tattybogle in reply to Jones1969

I agree, your fT3 is well within range, and ideally it might be better if T4 stayed in range , but if they won't replace your T3 what do they expect ? WE all know you may well need t4 that high just to get anywhere near enough T3. but i'm just meaning to approach the conversation in terms of what GP sees as the problem, since they mostly know nowt about T3 and care even less. But of course, :) like Greygoose said.. if you were to start making noises about wanting to try to get (ludicrously expensive) T3 prescribed instead of having slightly over range T4 they might suddenly decide a slightly over range T4 isn't so scary after all.

Hope you manage to get your dose back.

Such dreadful arrogance ... as if it's not bad enough having lost your own thyroid hormones. ...but the feeling that 'someone else', who doesn't even think they need to speak to you about it, is in control of what dose you're 'allowed' is just not good enough. Were not incapable of taking an equal role in these decisions, and we have a right to do so.

It's you that has to function on it , and it should be be you and the doctor TOGETHER that have to balance the 'risk/ benefit ' just like they do with any other medicine they prescribe.

SlowDragon profile image
SlowDragonAdministrator

Never ever test in evening

Only ever test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Say you forgot to stop high dose biotin supplements so need to retest

Refuse to reduce dose until had new testing done

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

When were vitamin levels last tested

Low vitamin levels are extremely common, on levothyroxine

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

penny profile image
penny in reply to SlowDragon

I’m sure that Jones1969’s doctor said: ‘there’s no point in us doing a thyroid blood test in the evening, why don’t we make an appointment for you for a morning test?’.

My husband had a thyroid test and they only tested TSH and didn’t tell him to avoid anything containing biotin for a few weeks before test. Useless.

SlowDragon profile image
SlowDragonAdministrator in reply to penny

Not only do they not advise patient.....they categorically deny time of day is relevant

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

NIKEGIRL profile image
NIKEGIRL

Hi. I would tell the dr that you are working in a partnership with him or her and by that it means discussing the next steps TOGETHER and looking at all the options. You will need to lay out the options you have or want to undertake. I do agree if you want the 200mg then advise the dr that you accept the risks and that you felt an improvement on the 200mg. Shaws had a great article this week on treatment of Hashimoto. When a dr texts you and dictates the next move it leaves you feeling like you have not been heard. As I always say to myself when I go to the hospital, in your case this phone call with the GP, big girl pants are required. Write everything down. That way you thoughts will be organised. God, why is this so hard. I’m frustrated for you. I watched a TV programme the other day and the man being interviewed said that there has to be respect first before trust can be attained. I’ve really thought about that. Sending u big girl pants from New Zealand 🇳🇿

SlowDragon profile image
SlowDragonAdministrator

See reply by Diogenes in this post

healthunlocked.com/thyroidu...the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing

academic.oup.com/jcem/artic...

Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.

As long as Ft3 is not over range you’re not over medicated

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