PA questions to improve health

[PAapr22]

Dear PAS group (I am new here)

I am due to finish my 6 injection loading next week and an injection every 3 months thereafter, after being positive IF last month April22. The GP asked me for a 3 month blood test.

One concern is that that B12/folate and full blood count test reading will be improved and the GP say you do not need injections - go on tablets. Despite being +IF as reading lots of posts indicates this outcome

1 should I have the blood test / do I need a blood test ? Note GP said they plan to extend more tests as my serum b12 was very low 57. Is it a good idea to have a 3 month blood test anyway as it shows progress and severity of my absorption rate ?

2 I am a Thalassaemia carrier, have small blood cells / slightly anaemic as a result, and is at odds with +IF that causes large blood cells so my RBC haemoglobin level is lower than the low range is there a link or any studies between the two diseases (+IF, low B12, thalassaemia carrier) ? And any documented data ?

3 do lozenges b12 under the tongue really work ? I’ve read lots but inconclusive. I’m planning to take lozenges or spray following the blood test ? To stabilise the 3 monthly injections ?

4. I’m a runner and love training but obviously cannot do this since going downhill quickly and also picked up inflammation and injury on my Achilles heel. Has anyone with PA been able to control B12 PA and healthy exercise regime? Any research or posts to aid me?

5 what depletes b12 . Gas and air on operations. What about exercise ? Anything else and why ?

Appreciate any help and I know these are a lot of questions about patient health - I’m reading lots of books and research articles but many questions remain for me.

Kind regards

[FlipperTD]

Scientist, not medic.

Ooh, an interesting case here! Your Thalassaemia gene will reduce your MCV 'normal range' for you, and consequently, as you rightly mention, the macrocytosis from B12 deficiency won't be as high as in the general population. It's vital that you understand your condition, and make sure you point it out to each and every person, to avoid something being overlooked.

I [personally] would make sure that I recorded my blood results every time, and charting the individual analytes will be interesting.

Measuring B12 on someone on injections is largely a waste of a test, and has the potential to mislead the clinicians too. Two things for certain; your Thalassaemia gene isn't going away, and your PA isn't either, so you will need B12 supplements from here on in. Whether you can absorb mega-dose oral B12 is another matter, and that may be something to consider. Your underlying Thalassaemia is likely to increase your folate requirements, so it's sensible to check that from time to time.

Good luck, and keep up the running.

[Cherylclaire Forum Support]

Also interesting that someone with Thalassaemia very recently posted here for advice:Bluelady-sing .

It was unclear whether she has PA too or not, but perhaps a link here between the two conditions ? Worth looking into. There have been links made between PA and many other conditions, including hyper- and hypothyroid conditions, psoriasis, vitiligo, multiple sclerosis.

As FlipperTD has said, a B12 serum test, after injections have started, will not be useful.

[PAapr22 in reply to Cherylclaire]

Hi Cherylclaire. Thanks for your message.

To be clear I’m a carrier so don’t have Thalassaemia just the trait. Just like having brown eyes or blue eyes passed down the gene pool. And as such have slightly smaller RBC. Wondering if this battles with the larger blood cells PA and low B12 gives.

I am + IF just diagnosed so not suspected.

I can see the usefulness of a blood test as will monitor absorption rate and any other unusual activity given this has just happened.

I do believe tracking vital data points alongside symptoms and side effects is worth knowing. As I will want to get into serious exercise again and will need this information.

Regards.

[Cherylclaire Forum Support in reply to PAapr22]

Even without the thalassaemia trait, it can be a confusing picture. Macrocytosis can be found in only about 60% of B12 deficient patients, folic acid supplements can stop the cells becoming enlarged, and microcytosis can point to an iron deficiency. Many people here have had all three problems: B12, folate and ferritin deficiencies. Folate deficiency should always be treated after B12 deficiency addressed.

Yes, useful to be able to see direction of travel - to be able to work out what needs help or when to cut back on supplements. Testing serum B12 after injections begin will show a very high serum level - and so for this reason may not be so useful.

Some GPs have misguidedly used this high level of serum B12 to stop injections- which of course will be detrimental to anyone with absorption issues, whether confirmed PA or for other reasons. Eventually, this would result in a below-normal B12 level again, but by this point, nerve damage could have occurred, which may even be permanent.

Difficult for patients right now, but useful to have same supportive GP providing consistency of care, with chronic conditions especially. Might be a good idea to list your particular set of symptoms to keep on record, too, for future reference - might be beneficial to you and GP.

Lozenges and sprays do work for some. I've only tried the Boost spray which some have recommended - and it did nothing for me - but may be worth a go after tests.

What depletes B12 ? Alcohol, nitrous oxide, exceeding energy limits - which varies and is individual, and this level does continue to improve.

Wishing you well.

Hope you are soon back up and running as before.

[charks]

Your idea of trying oral B12 is a good idea. I have PA but find that I can get by without injections by taking massive amounts of oral B12. My gut absorbs enough via passive diffusion. I don't run but I do 40 minutes on an exercise bike every day and go for brisk 2 walks every week of at least 5 miles. It does deplete my B12 levels but I increase my intake of B12 to compensate. If all goes well with your treatment you should find no problems with taking up running again. But you will have to top up with B12.

[PAapr22 in reply to charks]

Thanks charks for your experience. I do hope I can get back to it soon. I know everyone is different but -

How much b12 tablet do you take to manage an absorption and what type ?

Do you try lozenges or spray and have a view on what absorbs better ?

Regards

[Nackapan in reply to charks]

I think this more possible when not had any b12 injections.

Also when dietary or a faulty absorption rate .

My last neurologist as needed b12 himself researched this and actually write to my Gp as was on a trial of oral b12 to reduce b12 injection frequency. .

He had great concerns 'patients ' during g a trail coukd get irreversible nerve damage.

Possible but seems you in the minority to be fine on oral b12 only.

Shame most wouldd prefer a tablet or a sublingual.

Everyone so different .

[PAapr22 in reply to Nackapan]

Thanks for this. Yes I agree - what’s the point in risking it until sound research can prove it.

[Gambit62 Administrator]

You mentioned inconclusive evidence on use of high dose oral, mainly because the results are mixed - some people find it effective and some even prefer it but others find it gives them no benefit at all. This doesn't seem to be a specific feature of PA as the rates at which patients find high dose oral seems to be about the same whatever the cause of the B12 absorption problem.One thing seems to be clear - if you are going to try supplementing then its best to do it immediately after you have had a maintenance dose.

[JanD236]

I’ll just answer your point about exercise.

I’m back to cycling as far and as often as I’ve ever been able to now that I’ve established an injection frequency that works for me.

For the first year or 2 after diagnosis I was given injections every 2 months and then monthly by my GP. I could cycle/exercise but had to take it very easy and had to abandon a few rides as I just want up to it. My fitness dropped off before the next injection so in the end I started self injecting, weekly at first and then twice weekly for the last few years.

After slowly and carefully building up my fitness again over the course of a year or 2 I got it all back, for which I’m truly grateful.

On Sunday I did a 100 mile event (plus cycled another 20 miles to get there and back) which I mention to give you hope that you can get back to running.

My advice would be to take it easy, listen to your body and never push through your limits as you build up again. Patience is the key.

Good luck!

[PAapr22 in reply to JanD236]

Thanks Jan for sharing this useful information - this is promising and noted re back to fitness slowly and surely. I notice injury rates can be higher.