help after doctors chat please!

[Kiwi47]

hello

I wondered if anyone would be able to help in case I really am going mad. I’ve been feeling increasingly unwell for years really but dizzy spells/shoulder pain/occasional pins and needles in arm prompted me to get a blood test a few weeks ago. My mum had pernicious anaemia her whole life and thyroid issues since her 40s so it was on my radar.

the results flagged my folate level at 4.5 my b12 at 248 and my white blood cell count at 3.17.

the doctors seem totally unbothered by my complete exhaustion which is impacting my ability to look after my children and I’ve had to cancel lots of work due to really low mood and exhaustion.

The doctor suggested prescribing folate. Ur I told him I suspect it is pernicious anaemia as my b12 results over the last 5 years have steadily been getting lower and low white blood cell count always is flagged. He has referred me to haemotology and suggested folate. I shared with him the NICE guidelines about starting b12 injections if b12 is suspected but he says my b12 is completely normal and is not low.

to placate me he has booked me in for another blood test on Wenesday.

Am I making a song and dance about nothing? I know I don’t feel well and I know these things seem on the low side. But should I just have accepted the folate and waited to see if it helped me?

I would appreciate any kind advice please. Feeling a bit fragile and frustrated.

thank you 🙏

[Nackapan]

No you are not going mad.Get every test they will fo.

A case of elimination

You know how you feel.

It does run in families .

In 3 generations of mine .

Folic acid can mask a b12 deficiency causing neurological problems. Do read up on that.

and usually is prescribed after b12 starts if needed.

I'd your ferritin and vit D okay ?

Often these go low too if an absorntiin problem.

[Kiwi47 in reply to Nackapan]

Thank you, I wonder if I should have taken the folate prescription though? He seemed very certain and kept repeating that my b12 wasn’t low.

I have had a looked and they didn’t test for vit d or ferritin that I can see…the next blood test he said was to check the levels again and to check IF. I explained it’s not a great test as only shows up 50% of people with PA. I also told him it’s not something I want to have as it felt I was trying to fight to have an autoimmune condition!!!! I said ‘doc, this isn’t something I’m wanting to be diagnosed with but I want to feel better and I think this is what is wrong’

Sigh.

Hopefully next bloods will show all is fine. And hopefully I will also miraculously suddenly feel great too!

[bflare]

Hello. I’m having a similar problem with my GP although they have agreed to give me the IFAB test and Parietal cell antibody test. I have also paid for a set of private blood tests that have cost £289. The problem is that they a reluctant to offer any further tests until the B12 falls under 200. He should be the guidelines and I also too the NICE guidelines in but he said they don’t follow those!

[wedgewood]

We all know that the medical profession is notoriously ignorant about B12 deficiency . Your B12 serum result of 248 could very well be low . Up to 80 % of that sum could be inactive B12 which the body cannot use . YOUR SYMPTOMS SHOULD BE THE FIRST CRITERIA TO BE CONSIDERED . They will duck and weave to try to stop giving B12 injections ( cost of nurse to the surgery ,not the actual b12 ) . The fact that your mother had Pernicious Anaemia should also be a major consideration. It is acknowledged that there is a genetic link with P.A. P.A. Can only be treated successfully with B12 injections .

In Japan , you would be treated already with that B12 result.

Do not despair . Most of us on this forum have had difficulties getting the treatment we need ,and have resolved the problem ourselves. Come back and tell us how you get on . You will get help here if you fail to get it from your doctor .

[Kiwi47]

Thank you that is encouraging. It is an odd feeling to be telling the doctor what he should be doing. I have felt very depressed about it as I feel sometimes so exhausted and depressed I struggle a lot.

My mum died in October of stomach cancer and I wonder if the grief and stress is what is triggered this.

Hopefully I will know more this time next week when results are back in I hope and I will just take it easy, avoid bright lights which seem to bring on dizzy spells, any sort of stress (haha with four children!) and basically doing anything after 11am.

Good luck to all and thanks, the support is really appreciated.

[GoneWithTheWind1972]

So sorry to of your mother’s passing. Your doctor should take you more seriously especially with your mother having PA and thyroid conditions.

My mother also has PA and hypothyroidism and I witnessed her health declining before I intervened and set her up for SC methyl B12 injections like myself. To date, she’s had a remarkable improvement in her health.

I highly recommend you do the applicable antibody tests for PA and for thyroid antibody tests as this could also explain many of your symptoms. PA and Hashimoto thyroid disease share similar symptoms.

Once you get your results you should begin self injections of B12. Based on your symptoms, give yourself plenty of time of your self injecting of every day, or every other day, for about six months to a year and reassess how you’re feeling. I guess that you’re in New Zealand? I’m in Australia and I can buy Hydroxocobalamin B12 over the counter in pharmacies here, assuming that’s the case where you’re from.

Get your nurse/GP to teach you how to subcutaneously self inject safely, if not YouTube has great videos on this. Also add an excellent B Complex. Many resources available on this forum to support your healing process.

Lastly, do not be discouraged by doctors and their lack of knowledge of PA and the symptoms. It’s across all medical professionals who lack understanding and the consequences of long term B12 deficiency.

Your B12 is extremely low in my opinion for which you are experiencing poor health as a result. Many of us on this forum have been in your situation and are very understanding of your situation. Stay positive and keep us posted with your healing journey.