Thyroid dose possible reduction..again! - Thyroid UK

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Thyroid dose possible reduction..again!

Wilko91 profile image
15 Replies

24/09/20 TSH-1.21 T4-23.4. Reduction from 125mg to 100mg

25/11/20 TSH-0.86 T4- 22.6 further reduction 100mg to 75mg

16/02/21 TSH-1.85 T4-20.9

Had test due to feeling very wiped out 02/06/21 TSH- 2.02 T4 -21.8

GP wants me to do another test in 8/9 weeks as i may need to reduce again. I cannot believe this is normal. Not as if the thyroid really heals itself My concern still getting very tired. My GP surgery will not do T3. Though i had a full blood test at hospital end of Jan this year. Which covered Vit D , Follate, B12, Ferritin, full bloods etc. So i dont know where its going with my thyroid function. This lab works on TSH below 4.0 is normal T4 below 25.0 . I know they move the goal posts, very frustrating.

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Wilko91 profile image
Wilko91
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15 Replies
Lotika profile image
Lotika

Is the GP asking how you are feeling and what dose suits you best? I dont see over range fT4 being an issue with your (relatively) high TSH, so I find it odd. I am not a medical professional, mind.

I hear you said they don’t test fT3, but you could argue that given TSH is in range, fT3 would need to be tested if they want to argue that you are over medicated. An over range fT3 would make you over medicated, but it’s not likely.

Do they ask you about symptoms? I would base an argument on those.

Just editing to say that I don’t see a range on TSH but have assumed it was 0.27-4.2… ? I based my thoughts on info you didn’t give!

SeasideSusie profile image
SeasideSusieRemembering

Wilko

This lab works on TSH below 4.0 is normal T4 below 25.0 .

Does this mean that the FT4 range is xx - 25.0?

If so why any reductions at all, none of your FT4 results were over range.

My GP surgery will not do T3.

Most labs wont test FT3 unless TSH is suppressed. This is why hundreds of us do our own tests. It's very likely that you have a decent FT4 level but a low FT3 level. In your shoes I'd do my own test to include TSH, FT4 and FT3 to check this out, the answer could very well lie there (poor conversion of T4 to T3).

MonitorMyHealth are the cheapest for this basic test - £26.10 with code from ThyroidUK:

thyroiduk.org/help-and-supp...

tattybogle profile image
tattybogle in reply toSeasideSusie

previous post say's "Looks like the lab range from the print out Serum free T4 [13.10- 21.30] mine was 23.4 i thought it was above 25 is too high. ..." which probably explains the reductions assuming same lab range on other test from same GP. healthunlocked.com/thyroidu...

Wilko91 fT4 can only be only interpreted by the range that the manufacturer of that particular test machine calibrated it to.. you can't use a range from another machine against your result . if you put your blood sample in a different machine you would have got a different number for fT4 , but it would still be same result ie over range /mid range/ below range.

So for example, your current fT4 result of 21.8 [13.1?- 21.3 ?] would come out as 25/26 ish on a machine with a range of say [15 -25]

But it's not wise to just assume the lab range for latest is the same as the last test even if it was sent to the same lab .. the lab may have got a new machine in the meantime or they may have sent it to a different lab cos they were too busy etc .. so you always need to ask for the lab range at he same time as you ask for the result.

Wilko91 profile image
Wilko91 in reply toSeasideSusie

Many thanks i have just ordered the TSH, T4, T3 test

SeasideSusie profile image
SeasideSusieRemembering in reply toWilko91

Wilko91

For the most accurate result, we advise doing thyroid tests as follows :

* Test no later than 9am, this is because TSH is highest at that time and lowers throughout the day. To avoid a reduction in dose or when looking for an increase we need TSH as high as possible.

* Nothing to eat or drink except water before the test. This is because some foods can affect TSH, as can coffee.

* Last dose of Levo should be 24 hours before the test, adjust time of dose the day before if necessary and on the day of the test take your dose afterwards.

* If you take Biotin supplement or B Complex, leave this off for a week before the test as this will cause false results if biotin is used in the testing procedure (which most labs do).

It's advised to do the test Monday - Wednesday only and post the same day. To ensure it arrives as soon as possible you might want to take it to the Post Office counter and pay extra for Special Delivery Guaranteed by 1pm Next Day. The return envelope included with the test doesn't guarantee next day delivery and it's best to get the sample there the next day if possible.

Wilko91 profile image
Wilko91 in reply toSeasideSusie

Thanks for this, very much appreciated.

jrbarnes profile image
jrbarnes

I'm like yourself. I need over range T4 levels just to get my TSH to 1.3. Your GP is completely ridiculous. I told my GP "no" you will not lower my Levo. I would suggest going back to 125mcg if that's where you felt better. I would look the GP in the face and tell him you're making me ill and unwell by lowering my Levo. The actual thyroxine levels in your body is most likely in range.

SlowDragon profile image
SlowDragonAdministrator

Recommend you retest vitamin levels too, if you can afford too

What vitamin supplements are you currently taking

But essential to test Ft4, Ft3 and TSH

Monitor My Health is cheapest

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

Wilko91 profile image
Wilko91 in reply toSlowDragon

Thank you just ordered that particular test.

Jazzw profile image
Jazzw

You aren’t taking your levothyroxine just before the test are you?

Wilko91 profile image
Wilko91

I try and have my dose in the mornings last test was in the afternoon. Yet before on one test i skipped my dose until after the test very confusing

SlowDragon profile image
SlowDragonAdministrator in reply toWilko91

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

TSH daily variation

healthunlocked.com/thyroidu...

So it’s very important when you test TSH ....

researchgate.net/publicatio...

According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”

“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”

ncbi.nlm.nih.gov/pubmed/252...

TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.

JAmanda profile image
JAmanda

You really have to get your T3 tested privately to see if you are not converting well and if that's the case need to get referred to an endocrinologist on nhs (thyroid Uk has a list of friendly ones) or ho private.

Wilko91 profile image
Wilko91

So finally did the test this morning ( been away) and will send it off today. Interesting to note their lab levels for TSH 0.27- 4.2, T4 12-22 , T3 3.1-6.8. So my last T4 was 21.8 their upper range being 21.3. So lets see if i am required to reduce again, after i do another test with my GP in a month.

Wilko91 profile image
Wilko91

Forgot to add be interesting to finally get a T3 test result.

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