Dear Gambit62, Sleepybunny, Rexz, Wedgewood, and Nackapan

Thank you! Your responses to my query regarding specific tests that assist in determining pernicious anemia will be incredibly helpful. I looked on MyChart - my medical clinic's website that provides patients direct access to their test results. Here is what I found along with responses to some of your comments:

B12 - 586 on 3/28 /22- down a little from previous month

(as an aside b12 was over 2000 when diagnosed with autoimmune atrophic gastritis a year ago - and was taken off of it it! I became sick and was put back on it and since then have been having a difficult time getting on track)

Folate - greater than 20 (greater than 4.7 is standard) - 3/28/22

(another aside: had been on 2 mg folic acid for over 12 years for high homocysteine - doctor never took me off of it until I decreased it myself to 1 mg a few weeks after reading here about the problems with high a dosages. there was one exception 7 years ago when I stopped taking it for a short time and then had an unprovoked lung clot - hospital docs asked if I had done anything different and I told them about going off the folic acid - they told me to go back on it - same dosage)

MMA - 142 on 8/24/21

Homocysteine - 9.6 on 3/3/22

Have not not had Holo-T/Active b12 - never heard of it but will ask

Intrinsic Factor - negative 2/3/21 and 9/22/21

Gastrin - 2,056 - on 2/6/21...less than 115.0 is normal! this is when I was diagnosed with autoimmune atrophic gastritis - stomach lining is being chipped away by my antibodies (is what gastro doc told me)

Parietal cell - 1:160 positive on 9/22/21 - negative is normal

Parietal Cell Ab Panel - Positive - 9/22/21 - negative is normal

CBC Diff - all normal - on 3/28/22

I'm not vegetarian but only eat fish and poultry; not on metformin or PPI but I do take Pepcid as needed due to the stomach issue and I'm careful to take it 4 or more hours apart; not on nitrous oxide; no fish tapeworm that I know of; had gallbladder removed many years ago; I do have gastric atrophy I would think; no HPylori; not sure what macrocytic anemia is; I would have high homocysteine if wasn't on folic acid; and MMA is normal as stated before.

As many of you have experienced, I too cannot find a doctor who will, or I should say can, work with me on this. While they will give me any test I ask for, they can't really give me any definite answers to my questions. I kind of feel sorry for them. As I told you in my last posting, I have a number to call to see a different doctor for a second opinion - but I can't find any when I do a search who specifically specialize in Pernicious Anemia and B12 deficiency - it's all under hematology in general. So I feel I will just be going to another doctor who will also be stumped. It's frustrating to say the least. Like all of you I'm sure, it would be great to find a doc who also has PA or B12 deficiency and is going through what we are.

Two other symptoms I forgot to tell you about are blurry vision and light-headedness. I have hypothyroidism and my med during the last year is not absorbing as well as in the past and have had the dosage on that changed numerous times - I'm working with an endocrinologist on that.

Any other insights you may have I am always eager to hear them. I just wish I could take you all out to lunch to show my appreciation for your valuable knowledge and generosity of time.

[Nackapan]

Your b12 is low on regular injections. Most of us 1500 abd above.

Although a good range it's what you csn actually use at cell level.

It appears when the process has 'broken' we need very high levels to actually utilise it .

Megobolastic anaemia is when thd red blood cells are too big and this inhibits oxygen circulating around the body.

That's how it ead explained to me hen my daughter had it.

Do you see a gastroenterologist ?

Such a pity specialists do not communicate with each other.

I saw neurologist ,chosen fir expertise in migraines.

He had b12 deficiency himself!

He also could not manage on the frequency of b12 injections set here!

Did his own research and wax surprised how few 'papers' there were to read.

Also how little research

He also wasn't convinced by thr recent push on oral b12 .

He advised me to keep my b12 levels high. As the push on oral b12 at that time during lockdown wrote saying to staybon b1e injections.

He admitted he wax unaware the havic it csn cause if undertreated .

His written advice was disregarded recently by new management at my Gp surgery as 2 years ago!-

To my surprise another neurologist sanctioned my 2 weekly regime nig even having met me.

The Gp wanted 'his back covered"

So see as many different specialists as possible.

Blurry vision is a common b12 deficiency symptom.

Light headiness could be your blood pressure. As I mentioned before undiagnosed PA / b1w deficiency gave my goddaughter POTS . Postural Orthosatic

Tachycardia

Her early symptoms were light headiness.

Rule out things.

Go through the posts .

Pick out anything g thst is relevant to you.

Keep going.

I'm still working on my own health.

Ruling things out .

Trying to make sense of it all.

It's useful if you can to make symptom lists so you can try and identify what is what .

Take care

[Gambit62 Administrator]

There generally isn't a need to do both serum and active/holo-T tests. Serum measures all the B12 in your blood and holo-T/active (different names in US and UK) measures the amount that is bound to a protein called holotranscobalamin. Generall that is 1/5 of the total serum B12.

The result of the gastrin test is the confirmation that you have PA, its just being named differently.

[Gambit62 Administrator in reply to Gambit62]

Is your hypothyroidism auto-immune (hashimotos)? there is a very high crossover between auto-immune thyroid conditions and PA - something like 60%.You may find that taking your thyroid medication with something acid helps with the absorption - found that buried at the back of some US guidance. The general recommendation for taking on an empty stomach arises from best absorption happening at around pH4. An empty stomach achieves this for patients who do produce stomach acidity but if you aren't producing stomach activity then you need to introduce a little acid to get to that point.

To be honest I think getting thyroid medication sorted is a lot more difficult than getting B12 sorted out.

[Jillymo]

Did somebody mention lunch ? Oh yes please. 😋

I have suffered with both hyperthyrodism and hypothyroidism, in the early days of treatment I felt wretched. Many years later I am still struggling with being over medicated and having a severely suppressed TSH. This resulted in my endocrinologist reducing my levothroxine by a ridiculous amount of (100mcg all in one go ! ) This sent my body into absolute turmoil which then resulted in being under medicated.

It takes a good endocrinologist to get the balance correct but unfortunately not many of them do. My Gp only tests the TSH yet I am on T3 ! Even after pointing this out my doctor only tests my TSH. I now get my bloods done privately at least that way I know I am being screened correctly.

The B12 issue has not made things any easier. I too can relate to the blurred vision and light-headiness together with the most awful loss of balance. This has improved since having the B12 injections. The numbness, stinging and burning in my legs remain but since injecting it has become more tolerable.

For many of us this site has been a turning point full of useful information.

So a big thank you and hug to all. 🤗

P.s what time is lunch ?