questions about next steps please

[haggisplant]

I am hypothyroid but clearly having issues with keeping b12, folate and ferritin up if I don’t supplement with high doses. I have been having symptoms of parathesia , cognitive issues etc for many years on and off, many tests, despite good Tsh levels (I’m unwell if it’s 0.3, around 0.5-1 is best)

I stoped all supplements after breast cancer and became hypothyroid (tsh 6) for some times year after starting tamoxifen. Irregular heart beats and poor cognition started not long after correcting that to 0.5 last summer, getting worse in the autumn. Ferritin was unusually good (tamoxifen has reduced periods a lot) but folate really low, though just in range.

nov 24:

Serum vitamin B12 level 399 pmol/L [145.0 - 569.0]

Serum folate level 5.9 ug/L [3.9 - 26.8]

Ferritin 90

I self medicated as gp didn’t follow up and started taking a folate tablet and occasionally also a b complex (together health.)

Feb 25 - went to gp again with issues of stiff muscles, thinking issues, fatigue, palpitations, tingling lips and tongue and hands and feet. I’ve had to ask for a referral to Oc health as it had been becoming hard to go to work or work from home (very physical day job, teaching part time in a PRU.)

Serum vitamin B12 level 362 pmol/L [145.0 - 569.0]

Serum folate level 10.8 ug/L [3.9 - 26.8]

ferritin 50 (only one short period in December time so not due to that.)

Prior to breast cancer I did supplement with b complex and also occasional sublingual b12 supplements so it’s possible I had a good store. i stopped everything in June 2023. A medichecks test in 2022 was 128 active after using sublinguals.

About 3 weeks ago I did suddenly feel a lot more with it but have still had some sensory symptoms. I’ve resumed the folate and spatone.

Would the gp consider anti body tests for b12? Or should I peruse it privately? He’s ruled out diabetes and coeliac ( I hadn’t eaten gluten for two days but I’d be surprised as ferritin was good.)

or could this really be due to hypothyroidism? I find it hard to understand why other ppl don’t have to take these supplements!

[haggisplant]

I frequently have slightly sore tongue, sometimes tingling and ulcers which I’m so used to I’d never seen as hugely significant. And they keep testing my b12. It hovers around mid to high 300s (higher with sublinguals) but as I say I’ve always supplemented.

[Sleepybunny]

Hi,

NHS GPs sometimes won't accept the results of private blood tests but if results show something significant it might prompt them to order same tests on NHS or to refer you to a specialist who can order them.

Some links I post may have details that could be upsetting to read so you may want to have someone supportive read through it with you.

Blog post about being symptomatic for B12 deficiency with normal range serum (total) B12.

b12info.com/your-serum-b12-...

Has your GP got a full list of your symptoms especially any neurological symptoms?

I used one of the PAS (Pernicious Anaemia Society) lists below and added extra symptoms at bottom.

PAS list - aimed at patients

pernicious-anaemia-society....

PAS list aimed at health professionals

pernicious-anaemia-society....

Has your GP considered the possibility of functional B12 deficiency?

This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops deficiency symptoms.

MMA, homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose functional B12 deficiency.

UK B12 websites

Pernicious Anaemia Society

pernicious-anaemia-society....

If you suspect PA worth joining and talking to PAS.

pernicious-anaemia-society....

PAS website has useful leaflets.

pernicious-anaemia-society....

PAS have support groups in UK.

pernicious-anaemia-society....

They also have webinars on aspects of PA and B12 deficiency.

pernicious-anaemia-society....

B12info.com

Run by a UK campaigner on B12 deficiency issues. Interesting blog posts.

b12info.com/

The B12 Society

Useful lists of symptoms and causes.

theb12society.com/

B12d.org

Organises online talks about b12 deficiency and has monthly coffee mornings near Durham.

b12d.org/

Thread about tests for PA and B12 deficiency

healthunlocked.com/pasoc/po...

"He’s ruled out diabetes and coeliac ( I hadn’t eaten gluten for two days"

I'm wondering if not eating any gluten for two days could have affected test results.

Coeliac UK have info on diagnosis of coeliac disease.

coeliac.org.uk/information-...

Also search for "NICE guideline coeliac disease".

"I frequently have slightly sore tongue, sometimes tingling and ulcers"

These symptoms can be associated with b12 deficiency and folate deficiency.

Oral symptoms of b12 deficiency were mentioned on this recent thread below along with some other useful links.

healthunlocked.com/pasoc/po...

I left some detailed replies on these links with info to help those struggling to get diagnosis/adequate treatment in UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po....

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.

[haggisplant in reply to Sleepybunny]

Hello, thank you so much for your detailed reply.

I came down with chickenpox not long after posting this and am only just about over it. Struggling a bit with fatigue but to be expected. It was a bad dose but not as bad as it could have been!

It’s odd to have caught it. I didn’t catch it when the children had it a few years ago. I am going to discuss with the gp and point out the supplements I’ve been taking and push for clarity around the b12 / folate issues with the gp as I clearly have some symptoms. I will point out that if I had never taken I would probably have been be deficient a while ago! Since supplementing with folate I feel a bit better but i understand that’s the wrong way round. Certainly b12 dropped when I did.

I did a couple of private active b12 a few years ago and that was good, increased when taking the sublinguals. Folate at that point was also good and I raised ferritin to around 120 easily with spatone.

It’s just trying to work out if this is a side effect of hypothyroidism or a separate condition and how to best go about it. Or does that matter? And just take b12 sublinguals. I could persuade gp to monitor given I’ve been in and out so many times with peripheral issues.

[haggisplant in reply to haggisplant]

(I have rarely asked to be tested for b12. Last autumn was the first time I did outright and the gp happily ordered but didn’t follow up.)

[haggisplant in reply to haggisplant]

I may join the PA

[haggisplant in reply to haggisplant]

Had an excellent chat with someone at PA society and have some info on what to do going forward