reduction to thyroid tablets: just had yet... - Thyroid UK

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reduction to thyroid tablets

deborah111
deborah111

just had yet another blood test been told got to reduce down to 125 thyroxine a day

from 150

TSH is now 0.05 was 0.02 lab states (0.27 / 4.2)

doctor says its to low asked about T4 and was told this dosen't count so asked why test it then didnt get an answer to that did suggest that they need to look at all the results to be sure their treating me right but that fell on deaf ears, feel fine in myself am now worried that taking a lower dose will send me back to weight gain and tiredness, have manged over the last two years to lose a stone and its been hard to keep it off. really dont want to go backwards again, any advise on what to do next would be greatly received.

35 Replies
SeasideSusie
SeasideSusieAdministrator

What was your FT4 result Deborah?

T4 is 19.5 (12.00 / 22.00) thats the best its been for a while last test was showing 16 they took me of the liothyronine in september said it was pointless as it made no difference these days. havent even seen a doctor for over a year this has all been done over the phone or with a nurse.

SeasideSusie
SeasideSusieAdministrator in reply to deborah111

Deborah

You are not overmedicated with FT4 at 19.5 (12-22), that is 75% through it's range.

You are only over medicated if FT3 is over range so I would refuse the reduction in dose, stating that if they test FT3 at the same time as TSH and FT4 and FT3 comes back over range then you will reduce.

How did you feel when taking T3 with your Levo? What were your results then?

felt fine but since i been off haven't slept as much during the day at weekends so not sure that it was off any help my blood for TSH when i was on it was 0.02 and doctor said it was fine but he retired so got a new doctor so he now thinks he has to go by the bit of paper in front of him and not consider what and how the patient feels.

SlowDragon
SlowDragonAdministrator in reply to deborah111

FT4 often rises as vitamin levels fall

shaws
shawsAdministrator

Before you reduce your dose, if you can I'd get a private test for both Free T4 and Free T3. FT3 in particular is essential as it is T3 which runs our whole metabolism. Boh have to be in the upper part of the ranges.

TSH is from the pituitary gland - it rises if our thyroid gland is failing. So if we take thyroid hormone replacements and TSH reduces, that is what is supposed to happen. Unfortunately most doctors think we are now becoming hyPERthyroid which we aren't.

Two items to educate your doctor. He is covering himself obviously, which we don't mind, but if the decision backfires on us (the patient) we have to educate them that what they've been told is well out of date.

healthunlocked.com/thyroidu....

hormonerestoration.com/

(on the last link highlight what the Hormone Specialists states about the TSH. i.e. it is NOT a hormone.

We have several private labs that will do FT4 and FT3 as doctors don't think these tests are feasible when they are really most important. I will give an excerpt from TUK as well as private labs.

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

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

deborah111
deborah111 in reply to shaws

thankyou do feel like iam hitting my head against a brick wall sometimes, didnt even see the doctor was all done over the phone i said i would try it for 8 weeks but if iam not happy then i want to go back to 150 a day. he said this was hes field of expertise, think he needs to take a look at what he's doing as he's clearly out of touch.

Some lab result forms actually say "Do not adjust levothyroxine dose according to TSH result".

I would also politely say that you do not give consent to having your dose lowered. Doctors are advised to work with their patients as a partnership.

MissGrace
MissGrace in reply to spongecat

Hi Spongecat, that’s a really interesting comment. Can you tell us a bit more - have you had a lab result report that states this? Are you in the UK? Was it an NHS or private lab? Could you post a photo? I’d really like to see that and have a bit more info. Apologies for the barrage of questions but there are so many of us who would like to use that lab!

spongecat
spongecat in reply to MissGrace

Got me there in regards of proof but I swear I saw such a remark on a lab report that someone had photographed and put up in their first post. I remember thinking, 'Oh that's interesting'. Sorry I cannot offer something more concrete for you.

The labs often put little asides like that in their reports, sometimes in regards to certain results due to ethnicity etc.

Yes I'm in the UK but testing done under the NHS can be in regional / local hospitals, especially University Hospitals. Some is also outsourced to private laboratories depending on types of test required or under times of extreme workload. It works the other way too, such as Sandwell and West Birmingham NHS trust offering the vitamin D assays to the general public and BetterYou customers.

deborah111
deborah111 in reply to spongecat

my test result is NHS and says ?slightly over replaced?

wasnt anything on the one before where TSH was 0.02

SlowDragon
SlowDragonAdministrator

If you were on T3, who originally diagnosed you as having clinical need? Was it NHS endocrinologist?

Who stopped the T3 prescription?

When T3 is stopped vitamin levels often crash right down. Then TSH drops and FT4 rises

Absolutely essential to test full Thyroid and vitamins

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

If/when back on T3, make sure to take last dose exactly 12 hours prior to test

doctor put me on liothyronine years ago but changed doctors about a year ago as mine retired and other doctors at practice wouldn't listen at all, new doctors were fine to start as just put in prescription and never saw anyone, then was due blood test and for the last 6 months they just want to lower dose. not had any other check done my protein was low and white blood cell count high back in may but seems to have settled a bit now. I feel fine in myself used to fall asleep a lot during the day at weekends but been a lot better over the last year and very slowly losing weight and doing more exercise.

diogenes
diogenes in reply to deborah111

If you have been on T3 for years, then this will have suppressed your TSH. Over the years this response has become "hard-wired" so that probably no other medication in whatever amount will bring your TSH to measurable levels. I am fairly sure that therefore dose adjusting to try to raise your TSH significantly, let alone into the reference range will be completely fruitless. You will then suffer worse health for no reason.

deborah111
deborah111 in reply to diogenes

get what your saying but the doctor has tht blood test printed in black and white in front of him and as far as he's concerned my t3 is to low, ive given up with trying to make them understand next they will be saying i'am obese and diabetic and I will say yeah thanks for reducing my thyroxine and making me this way. I will try the 25 but have a good supply of tablets at home so can go back on the 50 for a while if need be.

Tjmk
Tjmk in reply to deborah111

When I had a reduction of 25mcg to 0mcg. Within 3 weeks I was miserable. Horrible joint aches, fatigue, and overall feeling of being unwell. (Think they thought since I was also on Armour 60mg I should have some T3. But I had also been on Synthroid 50mg as well and that was reduced to 0). I called and said I was taking at least half of my T3 meds - which helped me feel a bit better. I did more bloodwork and now they are watching my FT3 levels. They raised the Armour to 90mg. And put me back on Liothyronine at 5mcg.With possibly a slow incremental if needed. All of this happened because someone new looked at my results. Thank goodness I was able to get back in with my regular doctor.

So take care and watch how you are reacting to the lower dose of Liothyronine. My reg doc said Liothyronine should be always done in increments going either direction....ps. I am I the States.

mine says next to TSH Low make a telephone app. which i did but doctor wouldnt listen to how i feel just kept on about the bit of paper in front of him he when i asked what tsh result was he said 0.04 when i went in and got paper results it actually 0.05

Go back with the information you have from here and stand your ground - say you feel well and do not want to reduce your dose, it worked for me , as seasidesusie says your FT4 is only 75% through the range so by reducing your dose you will feel ill again , go armed be strong it’s your body and your life x

.....if necessary take someone with you. Maybe a sympathetic partner or family member? Sometimes doctors don't treat you like a child or complete idiot if there is someone on your side in the room!

funny part is not seen a doctor in over a year its all done on the phone or by a nurse that claims to be gp trained, will make an app next time and go in even if i have to wait 6 weeks for app

SlowDragon
SlowDragonAdministrator in reply to deborah111

If you're not happy, get full private testing of thyroid and vitamins

Refuse to reduce dose and get tested.

Make sure to get done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Come back with new post once you have results and ranges

my old gp actually told me not to take my tablets first thing before blood as they would give false reading shame he had to retire he was very understanding and let me decide how much I needed and how i felt a very rare doctor that listens to you and not looks at the blood results.

SlowDragon
SlowDragonAdministrator in reply to deborah111

It's rare for a modern doctor to do more than look at TSH

Certainly even rarer to look at symptoms above blood test results

Ridiculous over emphasis on TSH, despite thousands of patients remaining unwell unless also testing FT3, FT4 and vitamins

Yes I agree with spongecat and take someone with you, my husband stepped in when I was getting upset and frustrated by saying he wasn’t prepared to see me unable to function on the lower dose - it did help x

Iam a single parent so no one to take have had to manage this on my own since my daughter was 2, been fighting now with doctors for 19 years, my first gp said your a bit young to have thyroid problems, but the blood test showed it was well under the normal range he didn't even tell me this was for life had to go to library and look it up as didnt have a clue what it was all about.

I feel your frustration, it’s a constant battle but if your T4 & T3 are within the range then your not overmedicated , say you will come back if you have any signs and tell him you can’t function on a lower dose .

they are within range now but lab is saying slightly over on TSH which is 0.05 was 0.01 before, iam happy with my meds as they are but will the doctor listen o its all about budget.

.... and preparing everyone for the Private Health Care system. Now we do not need patients reducing their profits do we ?

I would refuse until you see the results of TSH + FT4 + FT3. If that is refused then say you will get tests done yourself and abide by that.

cant afford a private test, i work 4 days a week and pay my national insurance don't see why I should have to pay for a private test that the doctor will just take no notice of anyway.

Refuse to have a reduction unless they can prove with free t3 testing you are over medicated. TSH alone cannot and should not be used to determine this.

deborah111
deborah111 in reply to TSH110

will try it for a few weeks he said blood in 8 weeks but wont drop my meds till 4 weeks before might miss a few days and make it go even lower, then tell him how rough i feel.

as long as his bit of paper from the lab says its in range he wont listen or care how i actually feel, when i said iam still tired and got dry flaky skin he suggest it could be another condition but didn't say what no doubt will be put on antidepressants before long that or they will want to section me, oh no that will cost the nhs more money

SlowDragon
SlowDragonAdministrator in reply to deborah111

Insist on coeliac blood test and vitamin testing. Vitamin D, folate, B12 and ferritin

Low vitamin levels are extremely common, especially after forced removal of T3

totally agree its all about the money

Your greatest point of power is refusing a decrease or it is a fait-au -complete

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