Update: moving in the right direction (Graves now Hashimoto's?). New blood results, advice appreciated.

[Tuttare]

Hi again

Since my last post I have got my exemption certificate with no problem. My gp has now retired, which may explain why she was reluctant to increase my levothyroxine dose.

Anyway, I took 37.5 mcg for about 3 weeks and felt a bit worse with a slight flare of my TED, then upped dose to 50 mcg and after a couple of weeks started to feel much better and my eyes have improved (less red, bags gone down).

Here are my newest test results taken on 3rd May, 8.35am, last dose Levo 24 hrs before, no food or drink, on 50 mcgs for about 4 weeks:

TSH: 1.4 (0.35-4.94)

FT3: 4.4 (2.9-4.9)

FT4: 13.3 (9.0-19.0)

If anyone's wondering how I got my FT3/4 tested, I phoned the lab myself and asked them to add them on. They didn't ask who I was!

I know it's early days on 50 mcgs, but do these results look good?

Should I be guided by my symptoms when asking for an increase from this starting dose?

Does it matter if the FT4 is only 43% through the range if the FT3 is 75%? Am I a good converter? The levels have balanced since my last test when the FT3 was high.

Out of the blue I had a message that I have a telephone consultation booked for the 12th May with the endocrinologist. I'm assuming this will be the same one who told my gp I wasn't hypo and don't need levothyroxine. Will telling them I feel better than I have for years and the fact I have positive TPO antibodies be enough to convince them I need levothyroxine? I don't want them to say I should stop taking it!

In fact, I've been feeling so good recently that I've taken up painting!

Any advice appreciated.

[SlowDragon Administrator]

Looking at your helpful profile

You say you have low iron/ferritin

Are you currently taking iron supplements, when was full iron panel last tested

Likely to need further increase in levothyroxine over coming months

Testing after 4 weeks is too soon, but obviously you did so ready for endocrinologist appointment

Retest again in further 6-8 weeks

As you have PA and coeliac you may eventually need T3 prescribed, but at moment Ft3 looking ok

[Tuttare in reply to SlowDragon]

Ok, thanks.I was anaemic in 2014 prior to Coeliac and pernicious anaemia diagnosis. This was corrected by iron supplements. I've not taken any since early 2015.

I had a full blood count taken last August which was normal, but can't see ferritin result.

In October 2018 my serum ferritin was 148 (14-186) "normal." That might be the last time it was tested

My folate was 5.6 in August so I have been supplementing, and in January it had gone up to 12.4 (3.1-20.0).

I'll ask for full iron panel next time.

Thank you.

[kittyelen]

They look good to me

My latest are

TSH -0.15

T4 18.1

T3 6.1

I've been med free since start of the year but they've left me as this and next test 6 weeks where I may have to start meds again Atm I am borderline (Graves)

Looking at yours they are are far more in range than mine! Don't forget there is quite a lag when you change doses so I would just stick to the current dose if that is what they are suggesting?

(PS I would add the range for my T3 is different [3.1 - 6.8]) and T4 [12.0 - 22.0] so it really depends on your lab and the endo. )

I am well confused though as levothyroxine is for an under active one and your results are more the other way but still in range. If you were underactive your TSH would be like over that 4.94 mark! so if it was then your med has worked and got you well in range for that with a good TSH level

[Tuttare in reply to kittyelen]

Thank you, yes I will stay on the 50mcg levothyroxine until my next blood test.

It is the Levo which has given me these more normal results. I had become under active (subclinical) after years of carbimazole and my Graves has possibly transitioned to Hashimoto's.

It is very confusing, which is why I need to ask questions on Health Unlocked!

[kittyelen in reply to Tuttare]

It is! I was only diagnosed late 2020 so I am still learning a lot, it is very helpful here

That is good though to hear you were able to stay on Carb more long term. I was told if relapse they normally look at radioactive treatment. With me luckily they are not advising that as it would cause issues with fertility and I am 36 so they advise they go down the meds route and use one safe in pregnancy when/if we are successful. It is a mindfield sometimes!

It sounds like you are making progress now though since going the other way, hope you have good results on the next test

[Tuttare in reply to kittyelen]

Thank you.I have been on carbimazole three times. After having both my sons I took it for about three years each time (it made me under active), and the most recent relapse was in 2017 when I stayed on a low dose for 3 years 7 months.

Have you had your thyroid receptor antibodies (TRab) and TPO antibodies tested?

[kittyelen in reply to Tuttare]

Only at the beginning they were "weakly positive", but positive so they said underlying graves.

Should they be tested again? I will ask in my next check up

[Tuttare in reply to kittyelen]

I'm not sure if they should be but I asked for my TRab to be tested regularly the third time I was taking carbimazole because I didn't want to stop until the antibodies were as low as possible. I'd read that there is a greater chance of remission if the antibodies are low and a lot of patients relapse because antithyroid drugs are stopped too soon. (Sorry I can't provide links to back this up but my endo at the time agreed).

It's quite difficult to get them tested by the gp though.

[pennyannie in reply to Tuttare]

pubmed.ncbi.nlm.nih.gov/338...

So interesting reading of your journey with Graves - think the above link is what you are looking for :

Medichecks offer a TRab test : but these Graves antibodies will wax and wane throughout one's life, as we are looking at an auto immune disease for which there is no cure.

[Tuttare in reply to pennyannie]

Thank you!

[pennyannie in reply to Tuttare]

No worries - I expect a painting in due course !!

[Tuttare in reply to pennyannie]

My first attempt 😁

Seascape

[pennyannie in reply to Tuttare]

Thank you !

[Buddy195 Administrator]

I’m so pleased that your symptoms have improved Tuttare, as I know from personal experience how distressing TED flare ups can be. I would wait until 8 weeks after you’ve remained on a steady dose before retesting, then post these results.

I hope you continue with the painting; it’s so important that we all do more of what we enjoy! Very best wishes to you.

[Tuttare in reply to Buddy195]

Thank you Buddy195, that's very kind of you.

I must admit I did have a bit of a panic when my right eye flared up and wouldn't stop twitching (it has always been my worst affected eye).

But now my eyes are more comfortable than they've been for a long time and I'm chuffed that my eye bags have reduced; I didn't think that was possible!

Enjoy the rest of your Sunday.