Vertigo - GP diagnosed B12D but Haematologist said inconclusive symptoms

[JillMaryC]

Hi, I'm new to forum. I've received two injections of three monthly B12, but two weeks ago had A Turn, vertigo, loss of balance, nausea and massive drop in BP 82/53. Been literally laid up crawling from bed to sofa. Saw a Haematologist and he said B12 borderline for five years at 165, and recent blood test revealed 583. He said my symptoms neurological but grey and inconclusive, and not sure even if B12D was the correct diagnosis but something else going on. Didn't want to follow up with active B12, or IF or PA - saying tests not conclusive. I was hoping to clarify my health situation but instead confused.com. Meanwhile not able to work, put everything on hold, and BP crept up still low, with awful vertigo. Help! I am usually bright, optimistic and proactive, but when told second time by 'experts' all symptoms could come under heading of depression - then I want to weep! Help!!!

[Gambit62 Administrator]

Result of recent blood test is pretty meaningless after loading doses and whilst on maintenance doses - though could possibly indicate that you need shots more frequently if your symptoms are returning earlier.

The drop in blood pressure is a confusing symptom as it isn't something that I'd normally associate with B12D - so may indicate that there is something else going on - also the fact that it seems to have come on quite suddenly suggest that it may be something else. Have you had a referral to a neurologist re the vertigo and balance?

[JillMaryC in reply to Gambit62]

Thank you. Hmm..Gp refused loading dose, and I had to plead for more regular injections. Was prescribed 3 mthly, with one extra to 'see'. Reading around it seems some other B12D folk describe dizziness, but crikey who knows and what the BP is about I am not sure either. Back to the drawing board...

[dianewilson1900]

B 12 serum tests are often inaccurate. They can produce "normal" results and mask deficiemcy. It is imperfect testing. What matters is not B 12 serum levels. That only measures your overall B 12 levels in your blood. What matters is how well your body is UTILIZING it at the tissue and cellular level. Based on the symptoms you described, you sound mega defiecint! Ask for a homocysteine and MMA test. MMA stands for Methamalonic testing. Chances are they may poo-pooh the idea and say you don't need it, because doctors don't understand the need for it. They think a B 12 serum test is all that is needed. They could not be more WRONG! Print out articles on MMA and homocysteine testing. I cannot stress enough how important these tests are and they should preferably be done together. One is better than none. But try to gouge for both. If they refuse, switch providers. Write down all your symptoms. Your symptoms are severe to the point you may even have to go to the ER. Maybe it's worthwhile because they will give you THOSE tests!

[JillMaryC in reply to dianewilson1900]

Thank you for your advice. I will certainly research further. It's a minefield, but will look into MMA and homocysteine testing. Much appreciated,

[dianewilson1900 in reply to JillMaryC]

Your welcome! 😀

[dianewilson1900]

Could it be a bad reaction to the injections possibly? Your blood pressure is very low!l That's not usually a side effect but weakness, dizziness, loss of appetite, joint pain, feelings of bloating, itching, hives, difficulty breathing, etc. Is look up the side effects if I were you and write them down. If your weak and dizzy, this could be low B 12 But it could be a possible allergic reaction

[JillMaryC]

Aaaagh! It is so tricky working out what is going on...but obviously need further lines of enquiry. Thank you again.

[Marymary7]

You can get your own private blood tests done and post results on here. You can get a finger prick of blood and post off.

Read Sally Pachalok, Could It Be B12 book, it's brilliant.

[JillMaryC in reply to Marymary7]

Thank you. Sorry to so ignorant...I have a copy of NHS blood test, but what could the process of private blood tests reveal? Thanks too, for suggestion on Sally Pachalok book. Saw the film about her story.

[Marymary7 in reply to JillMaryC]

I didn't realise you had your results sorry but if you get a private test you will get the active B 12 results .

Also Hypothyroidism and b12 def are often found together and could be worth investigating as some of your symptoms are found in both health problems.

I have an underactive thyroid and get some of your symptoms including vertigo, when I get it I do the Epley Manoeuvre....I just watch a YouTube film and follow. Doing that enabled me to carry on working recently instead of going to the doctors when he dishes out a pill which makes me even more tired out.

[Gambit62 Administrator in reply to Marymary7]

please note - edited post to remove reference to NHS and 'the experts' - members of this form are not medical experts and this forum should not be seen as an alternative to professional medical advice.

UK members will be familiar with protocols etc used by the NHS in the UK and I assume this is what is meant by the phrase.

[Marymary7 in reply to Gambit62]

Understood Gambit62 . I have also done two edits. 😎

[JillMaryC]

Hi! Yes have tried that manoeuvre, late one evening, dangling head left to right, whilst holding iPad for You Tube instructions. What a carry on! I've turned into a moaning Minnie. But will research avenues you suggest. V kind, thanks.

[Marymary7 in reply to JillMaryC]

This link even mentions low B12 and folate in relation to low blood pressure. Definitely get help as low blood pressure is serious.

mayoclinic.org/diseases-con...

Good luck.

[JillMaryC]

MaryMary you are so kind. My BP has gone weird again this morning. So just read Mayo Clinic report. Helpful. I presented to emergency GP two weeks ago, who was unconcerned, said I just had a type of vertigo, perhaps. Aaaagh. I couldn't get another appt with my GP for a month then. Still. It's a glorious day. Going to drink gallons of water, sit under a tree and stay calm. Thanks for your support. Love your little dog in yiurvprifile pic. Have a nice day.