Am I anemic?

[Martin_N]

Hi all, I am a 37 year old man with high serum folate levels of 26 and low b12 levels of 227 (doctor says in normal range). I suffer with crohns disease and can't store b12 due to a bowel resection. So far I have suffered fatigue, dizziness, chest pain, shallow breathing, heart palpitations, confusion in my head at times and to top it off I now am suffering from a blocked left ear. I have had 3 Ecgs at hospital now and all apparently show heart is fine. Also had chest xray which shows nothing out of the ordinary. This time 4 weeks ago when I had my first palpitations I was running 4 miles every other day and swimming twice a week. Now I get out of breath really easy just walking. I have been put on a series of b12 injections and it will be my 4th tomorrow. I pray I feel a difference soon. Does this sound like pernicious anemia and how many jabs does it take for an improvement? Has anyone else felt like this? Thanks for reading this and feel free to reply

[Gambit62 Administrator]

if you have had a bowel resection and Crohns then that is the most likely cause of your B12 deficiency. The reason most need very little B12 from their diet is that they are very efficient at storing and recycling but if you can no longer store B12 part of that mechanism is broken and the Crohn's will affect your ability to absorb nutrients. The bowel resection may also have affected your ability to absorb B12 if it involved the ileum so you should really have been put on injections when you had the original surgery but it is quite common for this to be overlooked - doesn't make it right though.

PA is another condition that will result in problems absorbing B12. The symptoms of PA are the symptoms of the B12 deficiency that it causes so yes, it sounds like PA but as per first sentence, it probably isn't being caused by PA.

The serum B12 test is a very poor guide to what is going on at the cell level - but GPs generally not aware of it - what really counts is symptoms and those certainly point to B12 deficiency being part of the problem at least.

Unfortunately can't really give an answer on when you might feel better - it really depends on which of the many functions of B12 is really causing the symptoms. Some notice improvement very quickly - for others it takes a much longer period of time - and for some things actually seem to get worse before they start to improve.

Do you have your full blood results and do you know if you were showing any signs of macrocytosis - slightly enlarged and slightly rounder blood cells than normal which makes them less efficient at picking up oxygen in your lungs and transferring them to cells where they are needed, but this isn't always present and certainly isn't the only way that B12 could cause the problems you describe.

[Martin_N in reply to Gambit62]

Thanks gambit62. I have my full bloods but can't see that on there. Here are my bloods

Serum sodium 141 (133-146)

Serum potassium 3.6 (3.5-5.3)

Serum creatine 71 (36-107)

Glomerular filtration rate 90 ml/min

Serum Alt level 26 (9-55)

Total alkaline phosphate 26 (30-130)

Serum total bilirubin level 10

Serum gamma Gt level 31(8-78)

Serum albumin 41(34-50)

Serum cholesterol 3.7

Serum triglycerides 2.4

Serum HDL 1.5

Calculated LDL 1.1

Plasma glucose level 4.7(3.3-5.5)

B12 level 227 (211-911)

Serum folate level 21.7(2-11.5)

White cell count 7(4-11)

Red cell count 4.54(3.8-5.8)

Haemoglobin est 139(130-175)

Hematocrit 0.416(0.4-0.54)

Lymphocyte count 1.5(1.5-4)

Not sure if anyone can interpret.. Thanks

[Gambit62 Administrator in reply to Martin_N]

was hoping for MCH and MCV - as these would indicate whether your red blood cells were showing any signs of macrocytosis - but with high folate levels that ends to push things in the other direction.

I'm really not an expert.

May be worth asking about the total alkaline phosphate as it is low - but given Crohns and the bowel resection that may be the cause.

healthline.com/health/alp#R...

[clivealive Forum Support in reply to Gambit62]

I see Martin_N 's Folate is very high at 21.7 (2-11.5) or is that upper range low. Have you any thoughts on that Gambit62 ?

[Gambit62 Administrator in reply to clivealive]

yes it is high - if concerned something that could be followed up but can't find anything to indicate it is something to specifically worry about.

[Foggyme Administrator]

Hi Martin_N, Just to,let you know.... High folate levels (which you have) may cause symptoms such as muscle cramps, numbness or tingling, mouth or tongue pain, weakness, tiredness, confusion, or trouble concentrating.

And yes...I have felt exactly like you 😖. Diagnosed with B12 deficency.

It's not easy to say how soon you will feel better since some feel the benefits of the injections quite quickly, but for others it takes a little longer.

You say that you have been put on a series of B12 injections? Not sure if,you are aware but these should be followed with a permenant regime of B12 jabs (not just a few, and then stop - which is what some GP's do - naughty persons!).

Like Gambit62, I'm really surprised that B12 injections were not prescribed following your bowel surgery!! You should have these for life, the particular regime depending on what symptoms you have (if you need any more information about this, please post again - or see the pinned posts - as per next paragraph).

There are some very good PAS pinned posts to the right of this page when you log on. These give information about B12 deficency, PA, treatment and diagnostic regimes, and recent guidelines. In the third pinned post there's also a summary of guidelines produced by fbirder (Frank Hollis document) - good for,identifying useful information quickly.

B12 deficiency and PA are quite complex conditions and most GP's are ill informed and often, not very helpful! So please post again if you need any more advice or support - all here will know exactly what you're going through and will pop in to help 😀.

I really hope that you begin to feel the benefit of your B12 injections very soon and are able to get back to the swimming and running 👍

Take care x

[Martin_N]

Thanks so much guy's will keep you informed

[Foggyme Administrator in reply to Martin_N]

Hi again Martin_N. I realised, after writing my reply, that your potassium is a little on the low side.

Supplementing with B12 can deplete potassium and most people eat foods that are rich in potassium to counteract this (i.e. Bananas, low salt etc. - more diet information on the Internet).

It is not safe to supplement with potassium tablets since too much (or too little) is dangerous. Your GP should check your potassium levels as part of the routine protocol for B12 treatment.

Also - a thought - have you had a full iron panel blood test? People with B12 deficiency often have low iron and this can produce some really horrible debilitating symptoms (ferritin needs to be about 80). So,worth checking. (Note - low iron or iron deficiency anaemia is not the same as the macrocytic anaemia sometime present with PA).

As with potassium, take care with iron supplements since too much can, again, be as bad as too little!

If you want more information about co-factors (the vitamins and minerals essential to the proper function of B12), a search of this forum will bring up,lots of information.

As you will see, having the right balance of folate, magnesium, potassium (and lots more) is essential in order for B12 to 'work' properly.

Good luck and post again if you need more help 😀

[Sleepybunny]

Hi,

Are you in UK?

There is a UK document "BCSH Cobalamin and Folate Guidelines" which i found very helpful. i agve a copy of it to my GPs.

Page 29 is a diagnosis flowchart that shows the recommended process UK doctors should follow with someone they think may be B12 deficient. Page 8 in the same document gives details of UK B12 treatment.

B12 Deficiency with Neuro Symptoms

Dizziness and confusion are usually considered to be neurological symptoms. Do you have any other neuro symptoms? See lists of B12 deficiency symptoms below.

pernicious-anaemia-society.... Click on symptoms checklist

b12deficiency.info/signs-an...

UK b12 treatment for those with B12 deficiency with neuro symptoms is loading injections every 2 days for as long as symptoms continue to get better then injections every 2 months.

Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage.

ncbi.nlm.nih.gov/pubmed/191...

bmj.com/content/349/bmj.g5226

B12 books

"Could It Be b12" by Sally Pacholok and JJ. Stuart

"What You Need to Know about Pernicious Anaemia and B12 Deficiency" I gave a copy of this book to my GPs .

I am not a medic just a person who has struggled to get a diagnosis.

Macrocytosis

patient.info/doctor/macrocy...

patient.info/doctor/pernici...

labtestsonline.org.uk/under...

Sadly some GPs/consultants are not that well informed about B12 deficiency. I think it pays to be well informed in case doctors/consultants are not.

[Martin_N]

Hi sleepybunny, yes I am in the UK. Thanks this is a big help