Diagnosis Question - seeking advice

[Cherry_Angel]

Hi everyone, I'm new here and could use some advice. If you were diagnosed with PA, or B12 deficiency, how did you get tested? I do not live in the US or UK so things are a bit different here.

Since 2016 I have been occasionally visiting doctors about my heart palpitations, dizziness and tired feelings. They checked me out and said that I was in good health and saw no reason why I should be experiencing palpitations and the other stuff. After I was put on anxiety pills in 2017 and had a horrible experience I just gave up because it felt as though the doctors didnt believe me.

You know that feeling where you know someting is wrong with you but others cant find a reason so they stop believing you? Yeah. So since then I just dealt with it. But in the last year my experience got worse. My anxiety worsened, depression too. Some days I was so tired I could barely move. I couldnt understand. My diet was decent, I dont drink, smoke, eat junk food or overindulge but I always had to be lying down or sitting. Then of course there were the heart palpitations and short breaths / breathlessness.

And last month I started experiencing numbness in my left foot and more dizziness, palpitations and breathing problems. Sometimes I'd even fall asleep randomly without even realizing it.

I went to a GP who did a physical. Other than a slightly low blood pressure, he found me to be in good health so he did a blood test. This showed an ok result. He said my red blood cell count and haemoglobin was alright except that the MCH levels were high. When I pressed him for an answer about that he said that that can mean a number of things including a B12 or folate deficiency.

What upset me though is that he then sent me on my way with pills to address ulcerated stomach (since I told him that I sometimes eat every 6-7 hours due to a lack of appetite) and anxiety pills. He didnt even send me for further tests to check my B12 levels.

When I asked about that, he told me that I can come back in 3 months for another check up / blood test and if the MCH levels are still high "we will work on it". So I feel like a blind rat in a box rn. I have been doing all I can to read up on different things that could be causing my symptoms and the B12 sounds like the most plausible thing.

For the past two weeks I started eating tuna more and the numbness in my foot is almost gone. I also ordered Methylcobalmin (B12) sublingual tabs and I'm waiting for them to arrive. As far as I know, we dont have b12 shots / injections in my country. I couldnt even find the good B12 supplement locally and had to order the tablets online.

I tried taking a B complex while waiting for the B12 to arrive but that was a disaster. The only one I found was feom a local pharmacy and it had like 800% and 2000% of most of the vitamins and I started feeling ill after a week of it so I had to stop.

I have good days and bad days. Some days I am good enough that I can walk around and do my work etc. And other days I have to lie down because my muscles feel weak, my heart is racing a mile a minute and I'm breathless even when I am not stressed at all and very relaxed.

It is all annoying to say the least as I wish that I didnt have to wait 3 months to find out what to do. I went to an ENT 3 weeks ago for an allergy issue and when he looked at my hands he commented that I was pale and asked to see my blood work. He was the one that suggested that I take a B12 supplement-- something my GP didnt even tell me.

Another element to my annoyance with all this is that I had been taking a multivitamin for years which has like 500% b12 but thats in the form of cyanocobalmin so I guess that's useless.

My main question is if anyone's symptoms are / were similar to mine. Were you put on anxiety meds and ignored too and forced to find a way on your own? How did you get diagnosed? Was your problem detected via the MCH being high and then followed up with further tests? Also, is being told to wait 3 months sensible?

And finally, as I have no access to the B12 shots, is taking the lozenges a good plan? At this point, I'm just so tired of feeling tired all the time and having days with my heart and breaths being haywire like im about to die 😪

I considered getting a second opinion from a Haematologist but at this point idk- I dont want to just throw money at all these specialists when I should just wait out the 3 months like my GP said. I'm so confused. So thats why I want to get others' opinions / experience.

I should also mention that I am pescetarian but my diet tends to be more plant based and due to my lack of appetite I ate sparingly (although I always took vitamins) so that probably contributed to my possible deficiency...

Thanks in advance for any advice you have and sorry for the long post 🙈

[wedgewood]

Cherry_Angel . If only you knew how often your story appears on this forum . Firstly you have to realise that VitaminB12 deficiency ,/ pernicious Anaemia is a condition about which most doctors , and I include consultants , are very ignorant about , Good that you have found this forum . You have been taking some oral b12 in the shape of Cynocobalamin. It’s not true that it is rubbish , it works very well . But if you have Pernicious Anaemia , it will not work well enough , and you need B12 injections . . I’m sorry that I have little time at the moment as I have a long drive to go on shortly , but I had to get in touch with you to tell you that you will get help here . I can imagine how terrible you feel . I went through a very bad time myself and was also “;sent on my way” after having the horrible symptoms you describe .

You really need some B12 injections . I could eventually prove that I have P.A. as an Infrinsuc Facror Anti-Body test came up positive ( IFAB test) . Ubfortunately this test cannot be relied upon as about 50 % of PA patients test negative . As a result of this positive test I got 5 B12 injections inb2 weeks ( “ Loading doses “) There after only allowed 1 injection every 3 months , which was indufficient . As a result I am forced to self -inject weekly . to keep well . Self -injection is easy and cheap .. I don’t know what country you are in , so don’t know how easy or difficult this would be for you . . So we really need to know this ,

But best of all it would be good if you could get your doctor to give you a trial of B12 injections , B12 is fortunately a B Vitamin that cannot be overdosed ( unlike some other B vitamins . )

I. Sorry I have to go now . You will hear from others more knowledgeable than myself . . Do not despair . Best wishes .

[Gambit62 Administrator]

Cherry_Angel, there are a couple of things in your story that don't quite fit with a B12 deficiency/absorption problem, namely that the numbness was one-sided (neurological problems with B12 deficiency tends to be symmetric because of the way B12 works) and the fact that you say that your foot responded to eating more tuna - that would suggest a dietary problem rather than an absorption problem.Cyanocobalamin should be okay as a supplement - stuff saying that methyl is a purer form tends to be based on very old understanding of the processes for processing and transferring B12 from blood to cells which means that except in a few very rare genetic conditions (beyond the scope of this forum) the form of B12 taken in is pretty irrelevant, though that doesn't mean that people don't report responding differently to different forms of B12.

If you do have a B12 absorption problem then very high dose oral can be effecticce its just that there aren't any guarantees and it doesn't work for everyone.

Test relating to B12 deficiency are: Serum/Active B12, MMA and homocysteine. the last two are looking at metabolites that build up if your cells don't have enough B12 to process them.

Test for PA as the specific cause of B12 deficiency is IFAB but as Wedgewood says it isn't very sensitive and gives false negatives a lot of the time - so a negative isn't proof that you don't have PA.

Please also note that the fact that you have been supplementing b12 at the doses you have may make interpreting any tests relating to B12 deficiency very difficult.

[Gambit62 Administrator in reply to Gambit62]

Note: there is also some research going on about the use of Gastrin as a test to confirm PA as a cause of B12 deficiency

[Baggy8]

Totally agree with the excellent advice you've been given, and share many of your experiences - and frustrations. The advice given here has totally changed my life.

One point I'd like to raise, the numbness in my foot has almost resolved following supplementation, however, this was also asymmetrical like yours, and one of the reasons my GP felt proved my neurological issues were NOT B12 related...

Interestingly, but not relevant to B12, some years ago I suffered from a Cauda Equina, a serious spinal issue that requires immediate surgery. At that time also, the medics didn't accept how ill I was as my numbness then was also asymmetrical. Not until I became paralysed!!! Luckily all was resolved by the emergency surgery.

Currently I SI fortnightly and am very well.

[Nackapan in reply to Baggy8]

Ate you sure it wasn't connected?One of my daughters had investigations for Cauda Equina as having slot of the symptoms. The Gp rushed her to hospital.

She thrn had an MRi which showed a bulge / prolapse in her spinal cord.

She went from numbess snd incontinence to awful pain.

Nothing was concluded.

This was before a diagnosis of megoblastic anaemia abd a severe b2 deficiency sbd gokate snd ferritin sbd vit d deficiency.

I'd forgotten that amongst Al the other tests she had.

[Baggy8 in reply to Nackapan]

Hi Nackapan. I don't think there was a connection as the issue in the cauda equina was a badly prolapsed disc impacting on the spinal cord, not any kind of degeneration of the cord itself. The point I was making - and that in this forum we're all too aware of - is that the medics are not always open to anomalies when it comes to diagnosis unfortunately.😏

[elzepelsje]

Why not simply start with a single B12 blood test? Usually however, if you have PA, other values go down as well such as hematocrit, hemoglobin, vitamin D, ...