No surprise, surgery want to reduce my levo as ... - Thyroid UK

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No surprise, surgery want to reduce my levo as TSH suppressed... new results back...pls comment!

Gilbo72 profile image

So a couple of months ago I wasn't feeling great, very achey, getting tired very easily, no stamina. I had private blood tests and they came back:

TSH 3.18 (0.27-4.20),

TT4 106.0 (66-181)

FT4 21.10(12-22)

FT3 4.10 (3.1-6.8)

A couple of weeks later, I went to the GP armed with these results , We talked about conversion issues. My GP decided to test my FT3 only which came back:

T3 3.3 (3.70-6.70) Please NOTE the different reference range.

She decided to up my daily dose of T4 of 112mcg per day to 150mcg per day, and asked me to retest in 6 weeks.

The results on the new dose have come back:

TSH 0.04 (0.30-3.94),

FT4 36.5 (12-20.20)

FT3 4.9 (3.7-6.7)

Please NOTE the different reference ranges.

So on the new dose after a week I felt amazing (I put a posting here about feeling giggly) then the effect gradually wore off but I still feel better than I did at first testing.

As expected I have been summoned to the surgery on Monday to reduce my levo. Any thoughts or comments please?!

As previously posted I have always felt better when my TSH is suppressed and my T4 is over range

16 Replies
SeasideSusie profile image
SeasideSusieAdministrator

What did your GP expect by increasing your Levo, and by more than the normal increment of 25mcg? You were already at the top of the range for FT4 with your private test results. Obviously the increase was going to take your FT4 over range.

Your FT3 was already low (27% through range), and showing poor conversion of T4 to T3, with your private results. Your GP test of FT3 showed an even worse result with it being below range.

So your GP increased your Levo which has sent your FT4 massively over range yet your FT3 is still low in range (40% through range). You are likely to be making reverse T3 with such a high FT4.

It is clearly obvious that you need less Levo and the introduction of T3. To get that on the NHS you will need referring to a T3 friendly endo.

Gilbo72 profile image
Gilbo72 in reply to SeasideSusie

Hi Seaside Suzie, yes I have been referred but there is not an appointment until June!!! so what should we do in the meantime? I can't face going back to zombie mode...

SeasideSusie profile image
SeasideSusieAdministrator in reply to Gilbo72

If it was me I would show these results to the GP, explain about the poor conversion, state that you need an urgent referral to the endo to discuss the addition of T3 and will she ask for your appointment to be brought forward. If your GP doesn't understand about conversion and T3, hopefully she will understand after you explain it to her. Do some research and take evidence with you. Dr Toft, leading endocrinologist and past president of the British Thyroid Association, has recently written a new article which says that T3 may be helpful for many patients

rcpe.ac.uk/sites/default/fi...

If you can't get an urgent referral I would say to the GP that I have no alternative but to self source T3 and start taking it to help myself.

Or if your budget can stretch to it, see an endo privately but ensure it's a T3 friendly one, you can get the list of thyroid friendly endos from Dionne at ThyroidUK

tukadmin@thyroiduk.org

SlowDragon profile image
SlowDragonAdministrator in reply to SeasideSusie

Sounds like a perfect plan 😀

Gilbo72 profile image
Gilbo72 in reply to SeasideSusie

Thanks suzie, good link, are there more links on T3 conversion? I’m interested in why one who is healthy can then develope an autoimmune disease and then have conversion issues too. Where they always there? Do they develope... maybe going diwn a rabbit hole with this one!

Gilbo72 profile image
Gilbo72 in reply to Gilbo72

And about reverse T3? Any articles, will this reverse its self when balanced?

SeasideSusie profile image
SeasideSusieAdministrator in reply to Gilbo72

Don't get hung up on reverse T3, there's more than one reason for it, the test tells us if we have rT3 but not why we have it. You could be making it, it's a fair assumption with those results, but you may not be.

Like you, I had over range FT4, low in range FT3, and top but just in range rT3. I added T3 to my Levo. Some months later I retested rT3 and it was even higher than before, quite a bit over range. So by that time it wasn't because of high FT4 because my FT4 had come down to 35% through range and FT3 was 75% through range. It may not have even been high the first time due to over range FT4. It's not worth wasting money on the test because you don't get an answer. Best thing to do is worth with what you know - you are taking too much Levo giving you far too high FT4, and your FT3 is too low so you need to add T3 to a lesser amount of Levo.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Gilbo72

I can't help with any other links I'm afraid. I didn't have to discuss it with my GP, I just went ahead and self sourced T3 to add to my Levo. You could ask on the forum or do some Googling.

Who knows why someone who is health suddenly develops an autoimmune disease. There probably isn't an answer. My brother developed coeliac disease, a serious autoimmune disorder, at 70 years old, always been fit and healthy and no other autoimmune disease or medical condition other than atrial fibrilation.

Murphysmum profile image
Murphysmum in reply to Gilbo72

Me too! Hypo for nearly 15 years and stable but then everything went pear shaped about 18 months ago!

Oh how I want to turn the clock back. What Happened? Why is nothing working now?

Following

SlowDragon profile image
SlowDragonAdministrator in reply to Gilbo72

Roughly where in the UK are you?

Some CCG's still banning NHS endo's prescribing regardless of guidelines

Other CCG's are (reluctantly) allowing new T3 patients

The price is dropping slowly

Gilbo72 profile image
Gilbo72 in reply to SlowDragon

Hi SlowDragon, I’m in South east, I think the endo I will eventually see is open minded but I think he has told other patients there is no way they will get T3 on the NHS :(

This is so annoying. The conversion issues are clear from your tests - you really need T3 adding. I don’t know what your chances are in the current climate though. It really makes me angry that you are going to be kept ill on Levo when there are alternatives. At least your GP was open-minded about the problem of conversion and tested your T3. Many can’t get beyond a dumb TSH test. I hope you manage to get to a sympathetic endo. 🤸🏿‍♀️

Gilbo72 profile image
Gilbo72 in reply to MissGrace

Yes, she’s a new GP in the surgery and I was very surprised at her approach, I’m used to the old dinosaur who refused to accept I had a thyroid problem period, refused to re-prescribe my levo when I arrived at the Sugery, subsequently diagnosed me with CFS/ME when I became really ill and then grudgingly tolerated the ME clinic suggesting I should try levo and have spent the last 10 years avoiding/dodging/ignoring him as he has constantly tried to reduce it ! Oh the fun we have had...

MissGrace profile image
MissGrace in reply to Gilbo72

My GP is ancient. The one good thing though is he doesn’t appear to understand the current guidelines on TSH - he just looks to see if T4 is still in the normal range! He would have left me ill still - but when I said I’d go private and see an endo, he said he would find someone good for me - and he did! Also, as he recommended this endo, he does whatever the endo recommends. Puts me in a more fortunate position than many on here. Makes me really angry about the poor treatment so many face. 🤸🏿‍♀️

Well, you obviously need over range FT4 in order to convert enough T3. Your conversion sucks. So either they prescribe T3 for you, or you have to have over range FT4. You might want to take a copy of the Dr Toft article with you, as it explains that.

I think buying your own T3 is a seriois option, especially as you have good reason to think you won't get a prescription when you see the Endo in June. If they're as open-minded as you hope, they may agree to monitor you and advise you on dosage, etc.

The cost doesn't have to be much, as you can keep up with the Levothyroxine prescription, and supplement with T3. You'll be starting on 5 or 10mcg, which is a quarter or half tablet, so a bottle of 100 will last you ages.

To find out about sources to buy, make a new post asking members to private message you with their websites.

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