graves - results insights

[Kari55]

hi, could I please ask for your insights in terms of my results? I’m on 2.5mg carbimazole 5 x a week.

August Last week

haemoglobin 118 119 (120-150)

MCH 26.2 26.2 (27-32)

RDW 13 15.4 (11.6-14)

Serum folate 16.2 (2.76- >20)

Ferritin 3.9 5.3 (6-137)

TSH 0.38 0.72(0.46-4.68)

Free T4 12.8 14.3 (10-28.2)

Free T3 5.6 5 (4.3-8.1)

[PurpleNails Administrator]

I’m struggling to read those. Can you type out?

How do you feel? Do you have remaining symptoms?

Was test taken as recommended?

[Kari55 in reply to PurpleNails]

I hope this makes sense. First figure is from August, 2nd from a few days ago.

[SlowDragon Administrator]

August

Ferritin 3.9 (6-137)

Oct

Ferritin 5.3 (6-137)

Both these are extremely low

Are you on iron supplements prescribed by GP

if not, why not

[Kari55 in reply to SlowDragon]

I was on Iron Nano maximum dose. I have spent a small fortune on it but perhaps it’s not that effective.

[SlowDragon Administrator]

suggest you see haematologist re low iron/ferritin if endocrinologist won’t treat

[Kari55 in reply to SlowDragon]

Endo suggested an infusion

[SlowDragon Administrator in reply to Kari55]

Yes and when is that happening

[Kari55 in reply to SlowDragon]

Don’t know yet. I need to get insurance to approve it and then arrange it. I’m so scared of this procedure though 🫣

[pennyannie in reply to Kari55]

Is your endocrinologist seeing you through the NHS - if so - surely this will be arranged on the NHS ?

[Kari55 in reply to pennyannie]

I’m seeing him privately

[JuSa44 in reply to Kari55]

Don't worry about the iron infusion. Go for it because I found it better than taking tablets which made me constipated and turned my poos black. I've had one and it wasn't so bad at all! I worried about it beforehand but afterwards, I felt I had wasted my time stressing about it. Just make sure the dose is reasonable and the doctor doesn't blast you with too much iron. This happened to a friend of mine recently and she was unwell afterwards.

[Kari55 in reply to JuSa44]

Thank you that’s really helpful

[Kari55 in reply to JuSa44]

They said it would be1000mg infusion, is that ok or too high?

[JuSa44 in reply to Kari55]

I'm not sure. My friend got the max possible dose, and I am not too sure what that is!

[pennyannie]

Hey there again ;

Your TSH is back in the range so as mentioned previously I think this phase of Graves now over -

If I take the second set readings -

your T3 is now 5 and around 18% with your T4 now 14.30 and around 24% -

so the chopping up of the AT drug worked and it now looks like you need to reduce further and probably stop the Carbimazole :

How is your eye ?

I really do think you need to do something about this ferritin reading - as mentioned previously when this was flagged - did you speak to the doctor - has an iron infusion been arranged - although I remember you saying that you didn't like this idea - ?

[Kari55 in reply to pennyannie]

My Endo wants me to stay on the same dose for another 3 months 🤔

And he wants me to do an infusion. I must admit I’m just so scared of iron supplements and infusion 🤦🏻‍♀️

[pennyannie in reply to Kari55]

I'm sorry but we had this same conversation a couple of months ago -

your low ferritin and iron levels are compounding your ill health further than necessary and think you just need to go with it - I'm sorry.