After months of prevaricating by my GP I decided to see an Endo privately. I won't to go into the history, but suffice it to say that his letter to my GP contained a thinly veiled rebuke in relation to the handling of my situation since I was diagnosed with TED by a consultant ophthalmologist in 2009. He has started me on only 25 mg of Levo (I am 75 years old) with a review in 6/8 weeks to be done by the GP although he asked me to let him know as well what the blood test results are. He has also given instructions for an ultrasound scan of the neck to be done because he could feel some swelling - not sure if this is normal?
I have started supplementing vit D and B complex (Thorne) on the basis of these medichecks results:
D3 56 nmol/L (50 - 250)
B12 76 pmol/L (37.5 - 188)
Folate 19.4 nmol/L (8.83 - 60.8)
Ferritin 149 ug/L (30 - 650)
Can anyone advise what optimum levels I should be aiming for?
Many thanks.
Written by
Italiangirl123
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Vit D - 100-150nmol as recommended by the Vit D Council, Vit D Society and Grassroots Health
B12 (Active) - 100 plus
Folate - at least half way through range so with that range 35 plus
Ferritin - that test is with INUVI lab through Medichecks and I have trouble taking it seriously considering everyone else's range for females is 13-150 amd GP range tends to be about 30-400. Some experts say the optimal ferritin level for thyroid function is 90-110ug .
As long as it's not raised due to inflammation (was CRP also tested as raised CRP shows inflammation) then if that was my Ferritin level I'd be very happy.
I notice that this is your first post. Could you share with us a little of your thyroid journey, so we can advise further? It’s useful if you can put this on your profile page.
I also have TED, but have this with Hashimotos (under active thyroid), whereas if is more commonly linked to Graves (over active thyroid). Has your TED burned out completely or do you still experience flares? What thyroid/ eye treatments have you previously had?
Can you share any thyroid blood tests (with ranges in brackets) for
TSH
FT3
FT4
Plus any antibody tests.
25mcg Levothyroxine is a small starter dose, so it is likely that you may need an increase when levels are retested.
Thanks Buddy195. As suggested I have posted my history on my profile page which will answer some of your questions... Interestingly when I first reported hypothyroid symptoms to my GP and reminded her about my TED she said this wasn't possible because TED is caused by hyperthyroidism. I now know better that it's not as simple as that!
Following the meagre NHS TSH and FT4 tests I did the full thyroid panel through Medichecks to get a fuller picture. Vitamins etc are in my original post but the other results are:
You definitely need an increase in Levothyroxine and then retest thyroid levels after 6-8 weeks on a higher dose. TSH should be under 2 (with many thyroid patients not feeling well until TSH levels are significantly under 1) and FT3 and FT4 higher in the range.
I will copy pennyannie and PurpleNails into your post, as both members are very knowledgeable about TED.
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