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I'm new here advice please trying to find a way forward

bevlah profile image
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I am 49 years old, i have been diagnosed with under- active thyroid for 11 years treated quite successfully up until September this year with thyroxine only, in September i became very unwell and did not respond to an increase in my medication after three weeks of chopping and changing the dose I was prescribed T3, however i met with a friend who is a naturopath , she practices in Australia and she recommended that i go back t GP and ask for additional tests namely B12, ferritin, folate, vit D and iron , my Gp agreed and i have a full blood screen too. Oh and I asked to be tested for thyroid hormones too

Results B12 226ng/L range 187-883

ferritin 37.0ug/L range 13-150

Floate 8.2ng/ml range 3.1-20.5

Iron -not tested

vit D 77 no range on results ( i had just got back from Spain !)

Thyroid peroxidase 62iu/mL range 0-5.61

But i also have Low serum inorganic phosphate level-0.78mnol/L range 0.8-1.50

MCV 104.5fl range 77-98

MCH 34.1pg range 27.3-32.6

I've been to see my endocrinologist he could offer no explanation as to why MCV/MCh resultss were elevated other than "the commonest reason for this combination is alcohol intake above the recommended limit!" i have two children and work full time yes i am guilty of a glass of wine or two at the weekends

I am so angry and upset , i asked about B12/folate as my levels although in range are low and i have been reading that they should be up in upper 25% range to assist my thyroid condition, he just kept insisting i was in range , i did out that range was for a healthy person and clearly i am not.he has written the most patronising letter and offered me another appt in February, he has referred to haematology but no idea how long that may take . I have read could it be B12 and really want to trail replacement therapy, as all i want is to feel as well as i can , although i am feeling better and back at work after 5 weeks off , i am still so tired and am still struggling with my memory at times,

I anyone has any advice or insight I would really appreciate it (and sorry for the rant!)

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bevlah
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Gambit62 profile image
Gambit62Administrator

not really sure where the whole thing about thyroid patients needing really high B12 levels comes from - the body is very good at regulating B12 levels where they need to be for the individual concerned so I personally wouldn't push on B12 levels needing to be really high because you have a thyroid problems.

Having said that

a) Things get different when an absorption problem occurs - and that would show up as significant drops in B12 levels over time - so trying to go from a single measure is a bit of a problem logically.

b) your levels may be in range but they are quite close to the bottom and given that the test is only really accurate to within 20% it isn't a level where anyone should rule out B12 deficiency, particularly if you are highly symptomatic and given that you do actually have some quite significant macrocytosis going on.

You have thyroid antibodies which means that you have hashimotos - and there is a high crossover between hashimotos and PA - 10-40% of hashi patients go on to develop PA (and about 40% the other way round)

ncbi.nlm.nih.gov/pmc/articl...

Suggest that you talk again to your GP and point them to the BCSH guidelines which you can access here

onlinelibrary.wiley.com/doi...

but they can access in the BNF

A trial of B12 would be well justified in view of the above.

You could also suggest that your GP takes a look at the area on the PAS website aimed at helping health professionals improve the diagnosis and treatment of PA (and B12 deficiency)

pernicious-anaemia-society....

bevlah profile image
bevlah in reply to Gambit62

Thank you so much for your advice my GP is actually very accommodating I think she too was hoping for some guidance on how to proceed from endocrinologist

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