Advice for blood-test redo after loading doses

[Battypatty2]

Hi you lovely lot!

I posted in July regarding my symptoms and your kind words helped give me the motivation to continue pushing my doctor surgery before they finally agreed to give me B12 injections. They started on 6 loading doses which I've just finished and now I need to wait the dreaded 12 weeks before the top up dose (I've found a local private specialist I can go and see in between if needed - it was impossible enough getting what I have!).

So they want to retest me before my next dose, which will include a full blood count again (folate and ferritin too) and tests for coeliac disease which they haven't done yet. The tricky thing is I've now seen two different doctors and got the approval for injections from my registered doctor who happened upon my notes due to another referral requested to her.... So except for the coeliac test (which is an overhang request from the first doctor) there isn't actually anyone from my surgery directing/looking to find out what's wrong lol...

Therefore my plan was, when booking in the bloods (I have to wait until next month for the booking system), I would request certain things to be tested.. so far I've had a TSH test for thyroid function and another I can't recall for diabetic indication - both were fine. Also had negative intrinsic factors.

Is there anything you all think I should request testing for? I didn't have my vitamin D tested so I will ask for this. I've read there is no point in B12 serum being retested so I'll ask them to remove this (don't want them using this as an excuse to stop treatment) - but would active b12 be useful for them to test? They haven't tested for this previously.

I was also thinking of asking them to retest the thyroid as someone told me it can fluctuate? If there are more accurate tests please do let me know?

My thinking behind this is I've gained weight throughout my poor health and had an unhappy stomach in the months leading up to my poor health so wondering if there is something more at play? Sadly I think my best method is to request certain things tested and hope they are so my doctors can't ignore any results presented to them.

Thank you in advance for any pointers ❤️❤️

[Nackapan]

Your symptoms could all be b12 deficiency symptoms.I would include ferritin and wise to repeat thyroid test.

The thyroid forum advise on what tests and when to have them

.

Folate is ususllg done with b12 so be aware of that.

A modest dose of folic acid 200- 400mcg often in s multivit which may be worth considering.

Go by your symptoms.

The surgery shoukd go by NICE guidelines!

[Battypatty2 in reply to Nackapan]

Thanks for your reply 😊. Yes I'm being treated for B12 deficiency with the IM injection and taking prescribed tabs for ferrous Fumerate and self supplementing with folic acid so hopefully that part is all taken care of ahead of my retest!

My symptoms for now are at bay just thinking about finding out what could be the underlying cause as I mentioned. Thanks for the heads up ref thyroid forum I will study this next 😊.

[Marz in reply to Battypatty2]

Sadly the Thyroid testing within the NHS is inadequate due to reliance on the TSH test - which is a Pituitary hormone ! You will also need FT4 & FT3 testing plus anti-bodies TPO & Tg.

Private testing is the way to go - info on all the companies is at...

thyroiduk.org

[Battypatty2 in reply to Marz]

Great thank you so much for this I'm not clued up regarding thyroid at all I will be sure to do some research and weigh up whether to go private 😊.

[grumpyold in reply to Battypatty2]

I am usually to be found on the thyroid forum but I recently started SI B12 so I lurk around both groups.

Marz is spot on with advice.

It's unlikely you'll get adequate testing on the NHS, just the TSH, so will probably need to get your own FT4, FT3 plus antibodies.

Use the link Marz provided where you'll find there are various private testing options with discount codes. Finger prick tests at home are really useful and save having to go to a blood draw clinic. Monitor My Health are an NHS lab based in Exeter, so may be more acceptable if you are pleading your case with your GP. Often GPs dismiss private tests as not being acceptable.

Medichecks and Blue Horizon are good too but only do finger prick test at home on a Monday or a Tuesday to avoid delays in it reaching the lab.

Medichecks can arrange for a phlebotomist to visit you at home to do your blood draw if you choose one of their tests which is beyond the remit of the finger prick option, but this costs more, of course.

There are also walk in clinics in Surrey, Kent etc if you you live close enough to make this option feasible.

[Battypatty2 in reply to grumpyold]

Great thank you so much I'll take a deeper look into this during some down time. Admittedly I have a huge phobia of blood tests so finger prick options are very appealing!!

[Cornwaller]

It is your blood and I would decline the b12 in writing as the NICE guidelines explicitly state not to retest. Your fears that they will misuse a b12 result are reasonable.

[Sleepybunny]

Hi,

Apologies for quick reply as worn out.

Might be helpful to join PAS.

PAS membershp is separate to membership of this forum.

pernicious-anaemia-society....

PAS article - Testing B12 during Treatment

pernicious-anaemia-society....

Stitchting B12 Tekort - Testing B12 during Treatment

stichtingb12tekort.nl/engli...

PAS also have

Help Sheet – re-testing of B12 during treatment

Helpsheet for Patient-GP Discussion

You would need to be a PAS member to access the two above.

"and tests for coeliac disease which they haven't done yet"

Might be worth talking to Coeliac UK. They have a good helpline.

coeliac.org.uk/information-...

NICE published a new B12 deficiency guideline earlier this year (2024).

pernicious-anaemia-society....

I have reservations about it but there are some good bits.

I left detailed replies in the thread below with useful links for those struggling to get diagnosis/adequate treatment eg other B12 documents, B12 websites, B12 books etc.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

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