referred to this site from thyroid UK... - Pernicious Anaemi...

Pernicious Anaemia Society

32,669 members24,064 posts

referred to this site from thyroid UK.beginning to panic

MKitty profile image
10 Replies

I had a private blood test done a couple of weeks ago. My B12 is sitting at 88.

T4&T3 okay

have Hasimotos and on 100mgs Levo

Hoping to get an appointment Monday with my GP. Any advice please the more I read the more I am starting to panic as I have had symptoms for years. They seemed to have been overlooked or confused with the menopause.

Edited by admin to add link to post on TUK

healthunlocked.com/thyroidu...

Written by
MKitty profile image
MKitty
To view profiles and participate in discussions please or .
Read more about...
10 Replies
clivealive profile image
clivealiveForum Support

Firstly MKitty don't panic.

A Vitamin B12 deficiency is easily remedied either through diet, supplements or injection.

Your doctor should be aware that Hashimoto's may put you at risk of developing a B12 deficiency so treatment should be forthcoming.

It would be a good idea to ask to have your Folate level tested. . Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

I am not a medically trained person but there are others on here who will be able to give you good advice.

"Don't panic!" - "Permission to panic please sir!" (Sgt Jones) :D

MKitty profile image
MKitty in reply toclivealive

thank you I have posted test results

Gambit62 profile image
Gambit62Administrator

Notice that B12 is the one test that you haven't posted a range for on TUK.

Can you clarify if this was serum B12 or active B12

For serum B12 your result is significantly low. For active B12 it would be a good result.

Suggest, assuming that the test was serum B12 that you put together a list of symptoms that you have that match with B12

pernicious-anaemia-society....

What is your diet like - do you eat meat/fish/dairy/egg. If not then possible that deficiency is dietary. If you do then that would suggest an absorption problem which ideally should be investigated but the most likely - particularly given the diagnosis of hashis - is PA

You need to discuss the results with your GP. They may want to repeat the tests as sometimes they distrust results done privately. You need to make sure that your GP is aware of NICE and BCSH (British Council for Standards in Haematology) standards (assuming UK based) and that there are different protocols for treating if there is neurological involvement.

Your folate is towards the low end and could become depleted when you start treatment with B12 - so you may want to supplement with folic acid - 200-400mcg a day should be enough.

Would be worth checking your ferritin/iron levels as absorption problems can affect other vitamins and minerals.

GP may also want to do a full blood count. Please make sure they are aware that, although macrocytosis (slightly larger rounder red blood cells) is a classic symptom of B12 deficiency 25%+ of people who are B12 deficient present with other symptoms first so the lack of macrocytosis should not be used to rule out a B12 deficiency.

MKitty profile image
MKitty in reply toGambit62

follow on. Any advice please from all you knowledgeable folks. I do admire you and have learned so much from your anwers

received the results from the nhs repeat bloods

Vit b12 101pg/ml 191-663

private results 6 wks ago 88 so has gone up a bit.

bone, liver ,kidneys all seem to be in range.

THS.0.22mU/L 0.27-4.2 down from 0.34 private test.

B12 was checked only because I said I had tingling in right hand and left side of my face. That is only one of many things making my life a misery. I asked about the terrible dizzy spells with sickness and cold sweats but didn't think they were related. Doc said I had peripheral neuropathy. PA never mentioned. I have started a course of 6 B12 injections every second day and then 1 every 3 months.

Can you please advise what if any vitamins I should be supplementing to get well

Thank you so much for reading this post

Gambit62 profile image
Gambit62Administrator in reply toMKitty

supplementing some folate would probably be useful - 400mcg available from supermarket would usually do the trick.

The recommended treatment in the UK (NICE and BCSH guidelines) if you have neurological symptoms is loading shots 3x week until symptoms stop improving (review at 3 weeks) followed by maintenance shots every 2 months.

Glad you got your GP to start treating you and stop dismissing a reading of 88 as a one-off

MKitty profile image
MKitty in reply toGambit62

thank you I really don't know what folks like me would do without folks like you. I am learning so much and find it appalling that GP don't ha e some kind of check list to discover why a patient presents so many different symptoms

MKitty profile image
MKitty

thank you here are the results

crp1.80 (less than 5.0)

ferritin150.1 (20-150)

tsh 0.34 (0.27-4.20)

T4 126.8(64.5-142.0)

free t4 22.20 (12-22)

free t34.58 (3.1-6.8)

anti throidperoxide121.5 (less than 34

anti throidgloblin 393 (less than 115)

B12 88 (less than 140, 140-250)

folate12.19 (8.83-608)

MKitty profile image
MKitty

Comments from private test are large red blood cells if not supplements(which I am not taking) May be infection. suggests B12 May be caused by PA

my diet is healthy I hope plenty eggs chicken fish not a lot of red meat. home made soup every day.

Thank you

Sleepybunny profile image
Sleepybunny

Hi,

There's a lot of B12 info in the pinned posts on this forum.

Who's at risk from PA and B12 deficiency?

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

MKitty profile image
MKitty

thank you I will read the links.

had my docs appointment today. oh dear I feel like I just go round in circles. She had my private blood results and said they were all good. i had to stress the B12 result sitting at 88 and she said that was okay. one low reading doesnt mean anything. after some further pushing she at least agreed to repeat the tests. Just another week of getting no where

Not what you're looking for?

You may also like...

New to the site

I was first diagnosed with PA 16 years ago at the age of 35. I was on 3 monthly injections until...

From bad to worse

Hi all, As per my previous post I am battling with my mum's health and her incompetent GP surgery...
Moggie profile image

New to the site and navigating confusing symptoms from teh USA

I’m new to this site, 37 and living in the USA. Probably like many of you, I’ve found this site...

Hi new to this site

Hi all, I am new to this site. I was diagnosed with low B12 in 2017 after sublingual B12 failed to...
Opal19 profile image

Hello glad I have found this site...

It all started 2 years ago, I became very breathless it seemed overnight, I noticed small things...
metro100 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.