are my labs showing anything?

[M-usher]

Hi all, wondered if anyone could offer some advice, i started B12 injections a couple weeks ago i only did a few days as i started to get symptoms of severe neuropathy n breathing & this cold sensation all over my body, ended up in A&E 🙄

I didnt know if it was because of injections or an advancement of my daily symptoms etc...

So i havent had injections for a couple weeks but i still have this constant rush of cold sensation through my body & honestly a burning all over my body 🥴

My dr said my bloods where fine etc.. but ive been here b4 and was literally bedbound with severe confusion, memory loss and seizures b4 getting on B12 injections that was 4 yrs ago.

This time the symptoms are not that its more stomach related im told mild gastritis but they dont believe the pain would be that severe i can barely eat honestly and no doctor can find the source of my pain so i wanted to try this.

My question is, do i do some private bloods to see if i have PA? And if so what bloods shud i have done?

Or do i try the injections again but im in so much fear its unreal.

Also as well as the injections i also have a liquid B12, dya think that could help or no?

I feel really stuck like if i take these injections will i be able to control the symptoms, did anyone else struggle like this & does anyone get this cold sensation through their body?

My blood test results from march till now some show steady decline & some show steady increase i'm given no reference ranges for some reason, but my dr said i do not have anemia or a problem with B12 so i just thought i would see if anyone else can make sense of these bloods please x

Large unstained Cell : March 0.12 | August 0.17 | Jan 0.14

Basophil: March 0.01 | August 0.02 | Jan 0.04

Eosinophil: March 0.08 | August 0.07 | Jan 0.11

Monocyte: March 0.31 | August 0.41 | Jan 0.37

Lymphocyte: March 1.79 | August 2.31 | Jan 2.87

Neutrophil: March 4.95 | August 3.19 | Jan 2.68

Red blood cell distribution: March 12.6 | August 12.5 | Jan 12.0

MCH: March 30.6 | August 33.5 | Jan 31.8

RBC: March 5.10 | August 4.21 | Jan 4.59

Haemocratic : March 0.48 | August 0.41 | Jan 0.44

MCV: March 93fl | August 97fl | Jan 96fl

Platlet count: March 269 | August 251 | Jan 281

Total white cell: March 7.25 | August 6.18 | Jan 6.20

Haemoglobin: March 156 | August 151 | Jan 146

💛

[Technoid]

"ive been here b4 and was literally bedbound with severe confusion, memory loss and seizures b4 getting on B12 injections that was 4 yrs ago."

If you were already prescribed B12 injections, your B12 must have already been quite low back then. Was the reason for that investigated or mentioned to you?

If you "didn't have a problem with B12", then how did the doctor explain how you ended up needing B12 injections back then?

With dietary issues, the cause of low B12 can be clear but if low B12 occurs for non-dietary reasons that speaks to possible absorption issues. A B12 injection, or course of them, won't fix an absorption issue, so it's important to try and get further testing to find out the issue. Intrinsic factor antibody is a good one to request.

You can have a B12 deficiency, even a very severe one, including neuropathy, without anemia. This is well known to those who research B12 but misunderstood by some(many?) GP's.

[M-usher in reply to Technoid]

Thank you, is it best to book in with haematologist for testing . Do you know how long i should wait before testing intrinsic factor as i retried the injections about 2 weeks ago

[Technoid in reply to M-usher]

From offhand recollection 2 weeks may be enough but your GP should confirm the necessary period between injection and IFAB test to ensure the B12 injection cannot be used as an excuse for invalidating the test results (as has happened with other members in the past).

[Rexz]

Hi M-usher

I'm so sorry to hear your having these difficulties. I personally know how you're feeling as I too was bedbound at one point with complete numbness on the right side of my body and inability to eat causing me to lose 90 pounds. So yes, that's a scary place and can feel quite lonely.

I concur with Technoid It's so important to get a proper diagnosis otherwise you can't know how to treat.

In addition to Intrinsic Factor Antibody test I would ask fow a Parietal Cell Antibody test and a serum Gastrin test. Either of these test "by themselves" are not considered diagnostic for PA/AIG but together, should they be positive, along with your symptoms they begin to tell a story. You mention they told you "mild gastritis" how did they determine this? Was it through gastroscopy? Or were they just guessing? It's important to know the cause of your gastritis and where it's located within your stomach as that's helps with diagnosis. ~99% of gastric is caused by H-Pylori bacterial infection which most always isolated to the gastric antrum (lowest part of stomach) H-Pylori caused gastritis is perfectly curable after eradication of the bacteria your gastritis can heal over time. BUT and very important, if your gastritis is caused my Parietal Cell antibodies (PCAb) or autoimmune gastritis (AIG) then the gastritis will be isolated to the Fundus, or the very top bulbous part, of your stomach and usually the upper gastric body but sparing the antrum. This AIG results from the destruction of the parietal cells that are located in the upper gastric body and fundus. If AIG you will show positive for PCAb and if advanced you will have B12 malabsorption and, most likely, have low or no gastric acid which will cause a whole host of digestive issues from Small Intestinal Bacteria Overgrowth (SIBO) to inability to hold food down, vomiting etc. An indicator of gastric acid levels is serum Gastrin. If gastric acid is low then serum Gastrin will be high. I add all of this discussion because its incredibly important you have a proper diagnosis. Also with an official diagnosis of AIG aka Pernicious Anemia then standard practice is to have a Gastroscopy with gastric mapping biopsies to further confirm the diagnosis and screen for gastric cancer.

Another question is are you prescribed and taking a Proton Pump Inhibitor (PPI) to treat your mild gastritis? This is commonly prescribed and prolonged use of PPIs are known to cause B12 malabsorption. Also, proton pumps are located in the parietal cells and if you do have PA/AIG then you need all your proton pumps a pumping.

I know Narwhal10 will chime in here to advise to get copies of your previous medical records and take those with you to each GP appointment.

Depending on diagnosis i.e. if you have advanced PA then a liquid or any firm of oral B12 supplementation will not work.

Hope that is helpful. I know it may sound like a lot of gibberish but if you go see a private GP take this with you.

Best wishes, Rexz

[Hockey_player]

What I do not understand is this: you had very severe symptoms 4 years ago when you were initially given B12. I am assuming that 4 years ago the B12 helped? But if it helped, that is a very strong signal that you probably have PA. So then it makes no sense that you ever stopped having B12 injections. If you have PA, you need injections for life. Is the B12 they are injecting now the same kind as you had before? If not, then it might be a good idea to switch back to the kind you had before. Sometimes people have allergic reactions to additives that are in things and different brands may have different additives. It would be good to get reference ranges for your test results because without them it is hard to interpret them. What was you B12 level when you had it tested 4 years ago?

[Hockey_player]

It would be good to figure out what is causing this: severe neuropathy n breathing & this cold sensation all over my body

[Narwhal10]

Hi M-usher,

I am so sorry to read how poorly you have been over the past 4 years especially this.

‘I literally bed bound with severe confusion, memory loss and seizures before getting on B12 injections that was 4 yrs ago.’

Sorry, I am trying to establish whether you were commenced on B12 injections 4 years ago ? Then had a break and re-started.

So the acronym for Delirium is PINCH ME - Pain, Infection, Nutrition Constipation, Hydration, Medication and Environment.

Were you prescribed anything for seizures ? If so what ?

Without ranges, it is difficult to tell. Plus, there is no ferritin, folate, B12, vitamin D.

You are ‘can barely eat honestly’. So, without nutrients going in and being absorbed and you have mild gastritis, your body and brain are not going to work effectively.

You can have bone bone, muscle pain, joint pain, fatigue and nerve pain.

Now, please consider joining the PA Society if you have not already. So, B12 is needed in all of our 300 trillion cells. It also is responsible for making the outer covering of our nerves. There are 7 trillion in human body.

Now, if you have been deficient a long time the first few or more Hydroxycobalamin or cyanocobalamin can really wake up the Nervous System. We can get worse before we get better. More pain, pins and needles, a whole head full of static, burning sensations. It is called the reversing out process. But a person has to be careful, they might be intolerant (react) to the additives.

Go back to your GP and ask for them to prescribe some En-sure. I am concerned that you are not getting nutrients - not your fault you are ill.

Dieticians use a Malnutrition Universal Screening Tool.

bapen.org.uk/pdfs/must/must...

GPs do not necessarily know about this.

The severe neuropathy, breathing and this cold sensation all over my body. What happened to your breathing please, M-usher ? Shallower ? Gasping for breath ? How soon after each injection ? How long did it last ? Did you receive any oxygen in Emergency Department. Oxygen Saturations ok ? Probe on finger.

The cold sensation could be there is a special wiring (runs from brain down our spine and into nerves) we have which is how we regulate and feel temperature. No, need to know what it is called. This could be healing ??

How quickly did symptoms come on ? How long did they stay ? We need to establish whether you woke up your Nervous System. Is anything else going on ?

Get ALL your blood results in HARD copy - yes, paper.

‘I do not have anemia or a problem with B12 said by your GP.’

They mean Iron Deficiency Anaemia where the cut off for non-pregnant women is 11 mg/L. Far too low in my professional opinion. So, the laboratory has not flagged it. (When I ran my own clinics, I would tell women, I have your blood results back, it is just a number to me, I could just look at them or ask them how they felt). I would listen.

So, options consider re-starting injections but this time ONLY inject 0.3 ml. Any reaction, drink a pint of water.

Have Parietal Cell Antibody, Intrinsic Factor test. (Ha ha, Rexz has done this, you wonderful fiend). Now the timings of which presently I am unsure of but will get back to you tomorrow by 6 p.m.

The more succinct and clear you are with your Health and having your Medical Records in order. For example :-

2018

Seizures, Memory Loss, Confusion

Medication - 250 mg Lamotrigine

2021

Gastroscopy by Dr DoLittle at Mayo Clinic confirmed gastritis

etc etc.

😘