Lowered thyroxine, not feeling great - any advice? - Thyroid UK

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Lowered thyroxine, not feeling great - any advice?

malvisia profile image
malvisia

Hi all,

I have recently been asked to lower my thyroxine from 175 to 100. The results (only ones tested) were as follows:

TSH 0.07 (range 0.27-4.2)

FT4 30.7 (range 10.5-24.5)

Viamin D and calcium and phosphate deficient

The only other blood test result out of norm was Red blood cell count (4.97 range 3.4-4.8) otherwise everything fine.

I have previously been diagnosed with Hashimoto, but NHS refuses to acknowledge it as my antibodies are now within the norm. I didn't have any hyper symptoms, and felt okish on the dose I had, however a surgeon (unrelated surgery for cyst removal) refused to put me under GA due to "overmedication".

I have lowered the dose to 100 but feel dreadful, lethargic, pain in all joints, stomach aches, muscle cramps and feeling a bit low. I'm a little bit worried that I'm doing myself no good with this drop in levo, but not sure if the symptoms are just an adjustment phase?

Any comments would be really welcomed.

5 Replies

That reduction was to much especially in one go, going to 150 would have been more sensible. Your TSH was fine were it was but your T4 was quite a bit over, you really need a T3 result to see if you really are overmedicated.

Depending on how long you have been on the lower dose you need more bloods done to include T3 then adjust dose again but personally if it were me I wouldn't wait, I would go back to 150 then do a Medichecks test in 4-6 weeks.

malvisia profile image
malvisia in reply to bantam12

Thanks so much for the advice, The last FT3 I had done was back in Jan (almost same values for TSH and FT4 as I have now) and it was 5.2 (range 3.1-6.8)

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, TT4, FT3

There was no FT3 tested

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you did the test?

As you have Hashimoto's low vitamins are extremely common, so very important to test vitamin D, folate, ferritin and B12

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Also with Hashimoto's are you on strictly gluten free diet?

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

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

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 money off offers.

malvisia profile image
malvisia in reply to SlowDragon

Hi, yes that's how I always do my tests. I have gone gluten free few years back which drastically helped with symptoms and looks like it was correlated with decrease in antibodies.

I haven't had FT3 test in the recent set, but as per my reply above, the last result was 5.2

Looks like you had a Hashi's flare. I don't know how much you know about Hashi's, but when the immune system attacks the thyroid, the dying cells release all their stock of hormones into the blood, causing the FT4 and FT3 to shoot up. But, it's only temporary. The levels will go down by themselves, and you will be hypo again. And, doctors are fools for not knowing this!

How long ago did you have the reduction? Make sure you go back for retesting six weeks after. And, if the levels have gone down again, perhaps you can explain to them what happened? Also that Hashi's antibodies fluctuate and just because they've gone back into range, doesn't mean you no-longer have Hashi's! If you've gone back to hypo, insist on your dose going back to what it was - although slowly would be better!

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