Still no improvement - possibly getting worse - Thyroid UK

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Still no improvement - possibly getting worse

msmono profile image
8 Replies

Hi, sorry to be back again but I'm not doing too well and not sure which bit to tackle with my G.P. in two weeks time. And, should I try some T3 replacement or ask my (private) endo about this? Worst symptoms right now are vary painful hands most of the time (new symptom), generally feeling very ill, hot (though I don't seem to sweat), extreme and sudden hairloss -all over not patches, itchy, prickly skin, awful brain fog and poor memory - almost feeling 'out of it', temp normal (usually it's low) I don't actually feel fatigued though. I have followed the excellent advice on here and been taking high quality Vit D/K, iron, B12, am gluten free. I'm attaching most recent test results.

From G.P. (they won't do more than this) 13/09/19

(full blood count done in March and was 'normal')

TSH level (XaELV) 0.06 miu/L [0.35 - 5]

free T4 level (XaERr) 15.8 pmol/L [7 - 20]

Vitamins etc from 3 weeks ago (that I could afford to have done)

Iron 41.4 range 13-150

B12 60.7 range 37.5-188 (this hasn't gone up since since taking supplements for two months)

Vit D 64.1 50-176

Thyroid test from Medichecks 03/09/19 - see photo

(TP antibodies have gone up if relevant)

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msmono
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8 Replies
SeasideSusie profile image
SeasideSusieRemembering

msmono

Vitamins etc from 3 weeks ago (that I could afford to have done)

Iron 41.4 range 13-150

B12 60.7 range 37.5-188 (this hasn't gone up since since taking supplements for two months)

Vit D 64.1 50-176

I commented on these results when you posted them 3 weeks ago so there's nothing else to say about them until retested in, say, 3 months' time after any changes to dose, etc. Previous post:

healthunlocked.com/thyroidu...

As for your thyroid results:

With your Medichecks results from 3.9.19 your FT4 was over range.

With your current GP results from 13.9.19 your FT4 is 68% through range so it has come down.

TSH is similar and there's no FT3 result from GP to compare with your Medichecks result.

Assuming there's been no change in your dose of Levo, and assuming that you left the recommended gap of 24 hours between last dose of Levo and blood draw for both tests and did them at the same time of day (recommended is no later than 9am) then it's possible you were experiencing a Hashi's swing at the time of your Medichecks test to give the higher FT4.

msmono profile image
msmono in reply toSeasideSusie

Hi sorry, to be clear as I can now see my post is a bit confusing, I know you commented on the vit results (hence supplements) I posted them (and the other results) for context/reference purposes because they usually get asked for :) Also just to say I haven't felt well since since taking Levo (other than the very first month and the odd ok day) but do feel I'm getting worse so it doesn't feel like a 'swing'. Is there anything else I can try? Is it possible I can't tolerate levo do you think? I honestly can't see the point in taking something that is making me feel worse than pre-diagnosis. (Yes I followed advice re 24 hrs no levo beofre tests) Thanks

SeasideSusie profile image
SeasideSusieRemembering in reply tomsmono

Have you always been on the same brand of Levo right from the start, or have you had the brand changed from your original one when you felt well?

If a change of brand hasn't been made then all nutrient levels need to be optimal for thyroid hormone to work properly, your B12 should really be checked for B12 deficiency as already explained, so maybe this is something to do with it.

Your Hashi's may also have something to do with it.

You are still very early in your thyroid journey, something like 3 months on Levo looking at your profile. It can take months for things to settle and you have the added problems of Hashi's and less than optimal nutrient levels.

msmono profile image
msmono in reply toSeasideSusie

Hi, thank you, I get that it's early in the journey compared to some - the trouble is I have been ill and palmed off for so many years and I probably got my hopes up that I might have a bit of normal life before I get too old. Same brand - it was switched but I asked for it to be put back to Actavis as I thought that was causing the problem. I went from 50 to 100 (as per endo advice) but then put it down myself to 75 as felt so ill but no improvement. Will try to keep going. Thank you for posting.

SlowDragon profile image
SlowDragonAdministrator

Which brand of Levothyroxine are you currently taking?

Have you always been on same brand?

Many people find different brands are not interchangeable. Teva brand upsets many people

Do you take Levothyroxine at bedtime or early morning?

Have you tried swopping and taking at the other time of day

Some people find splitting Levothyroxine 50mcg waking and 50mcg at bedtime can improve symptoms

msmono profile image
msmono in reply toSlowDragon

Hi, I'm early mornings only at the moment - 2 hours before food to be on safe side. I will try the splitting thing - same brand yes. Thank you for posting :)

silverfox7 profile image
silverfox7

Sensible to have dropped it down as it’s recomnended that increases are done in 25’s then tested after 6-8 weeks to see if you need a higher dose, you don’t want to miss your sweet spot!

msmono profile image
msmono in reply tosilverfox7

Thanks - so is the 'sweet spot' the ideal dose that maybe prevents the Hashimoto swing that I might be having? I have a horrible feeling that my perfect weight-related dose is 88mcg - a bit awkward.

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