SI for a year and feeling good. Now n... - Pernicious Anaemi...

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SI for a year and feeling good. Now not so good

SunshineMiGirl profile image
11 Replies

Hello.

I’ve been IMSI twice a month for nearly a year and feeling great.

However,,,the last month or so I’ve been feeling like I did before the SIs started. My doctor is very good with working with me and ordered bloodwork when I told her I was feeling off.

Hematocrit 45.1. Range 34.4-44.2

MCV 103.9. Range 82-97

MCH 33.6. Range 26.5-32.7

And of course b12 not bad because of SI,,,level 412.

This group has helped me to understand a great deal but I just can’t seem to get those 3 levels up.

Any thoughts?

Thank you!

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SunshineMiGirl profile image
SunshineMiGirl
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11 Replies
Nackapan profile image
Nackapan

So pleased you were feeling great. I'm sure it will return.

Only thing that jumped out at me was your b12 level.

Doent seem very high if si regularly.

SunshineMiGirl profile image
SunshineMiGirl in reply toNackapan

I was wondering that also. Seems with 1,000 injected IM twice a month it should be higher. Puzzled!

Nackapan profile image
Nackapan in reply toSunshineMiGirl

Yes when on the same regime. My levels when done with folate (not requested) were over a 1000

You

obviously using it

Good if you feeling okay

Seth12345 profile image
Seth12345

Your mcv is high, which suggests your red blood cells are taking up more volume (larger). I don't know much about this, but you might want to ask some questions or do some research.

SunshineMiGirl profile image
SunshineMiGirl in reply toSeth12345

I’ve researched but can’t seem to figure out why. I know low b12 can cause it but with the SI it seems this should raise levels. Who knows! Thank you for the input 😊

fbirder profile image
fbirder

Your MCV is quite high. The two most common causes for this are low B12 or low folate.

Your B12 isn't as high as I would expect from somebody who is injecting every two weeks. When I was on that routine my B12 levels were more than 6000.

If you've not had it tested recently I would get my folate checked.

If that's not low then i would ask for an MMA test. Methylmalonic acid is a chemical used up in one of the reactions mediated by B12. If you're not getting enough into the cells then MMA levels would be raised.

Another such chemical is homocysteine. A test for hCys is more difficult and not many labs can do it. Plus you have to give the blood sample as soon as possible before the test, so you have to be at the hospital. But it might be worth asking, because the hCys test will also show if there's a folate problem.

SunshineMiGirl profile image
SunshineMiGirl in reply tofbirder

Wow thank you for that great information. I researched for numerous hours before I posted for help. It’s so confusing but your reply has given me things to ask my doctor. Thank you so much.

SunshineMiGirl profile image
SunshineMiGirl in reply tofbirder

Would folic acid level be the same as a folate level? I asked for a folate check and a folic acid test was ordered. Just had it drawn this morning.

fbirder profile image
fbirder in reply toSunshineMiGirl

Doctors and biologists tend to use ‘folate’ and ‘folic acid’ interchangeably.

Chemists don’t.

The folic acid / folate test you ordered will measure all forms of folate (there are several that are used in the body, all interchangeable).

kittyflowers profile image
kittyflowers

With reference to fbirders comment on Homocysteine I have used a lab called Lorisian here in the UK who do a home test and supply a good report too.

JanD236 profile image
JanD236

My MCV is also on the high side and whilst I’ve been unable to find a definite answer as to why, I did find some suggestion on google that it could be linked to hypothyroidism.

I didn’t get any further with this other than to request thyroid blood tests which showed that my TSH is near the top of the range and my T4 is near the bottom so I am close to being hypothyroid but not close enough to be treated.

10 years before being diagnosed with PA I was diagnosed with Graves’ disease (overactive thyroid) and I was warned then that there was a good chance in future that I’d develop hypothyroidism.

So it might be worthwhile requesting a full thyroid panel?

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