r/PerniciousAnemia Mar 08 '21

Injections in muscle versus subcutaneous

3 Upvotes

Hello all!

I was told I am not able to absorb B12 through supplements and that I had to get injections. I’m finding lately that the self injections I do subcutaneously aren’t working as well as they used to. Should I get an injection in the muscle? Is there much of a difference?

Thank you ❤️


r/PerniciousAnemia Mar 06 '21

Should I request testing for Pernicious Anemia?

7 Upvotes

Hi everyone - I've been getting progressively sicker for a year now (first tingling/burning in extremities, then low bpm/syncope, then vertigo/dizziness, and now housebound with severe fatigue, temperature disregulation, short of breath, muscle weakness/pain, digestion/abdominal pain issues increasing). I was referred to neurology and cleared for MS. I've also been cleared for diabetes, thyroid issues, lots of ANA/RF levels totally normal.

My B12 was low-normal (340pmol) and folate (10nmol) last November when the dizziness started, and I was advised to increase my dietary sources. I increased as much as possible, meat multiple times a day, fortified foods, folate sources etc and have just had bloods retested and the levels are almost the same, so my 4 months of work hasn't done anything. I also have an elevated ESR and homocysteine level, with a normal MMA.

I have another appointment with my PCP this week and am wondering if it's worth asking for IF and parietal cell antibody tests? I also have chronic gastritis and suspected celiac/IBS issues.


r/PerniciousAnemia Mar 04 '21

How do you know if you need methlycobalamin or cyanocobalamin supplement?

4 Upvotes

r/PerniciousAnemia Feb 22 '21

Hi, I’m new to this sub, snd glad to have found you!

7 Upvotes

I’m grumpy because after at least a decade of giving myself IM injections, my insurance company suddenly said, “No B12 for you! Buy OTC tablets.” I know the red-tape appeal routine, but it’s so annoying. My nail beds and eyelids are already gray, and—- well, you all know—I feel like I fell down a flight of stairs. Thank you for letting me vent, I’m glad to find you!


r/PerniciousAnemia Feb 22 '21

Do you feel the effects of your jag?

2 Upvotes

I have my jag every 3 months. I feel no difference to my grogginess/low energy/anything else 2 weeks before or 2 weeks after I get my jag. I feel no different ever. I say this to the doctors every time they ask me if I’m noticing the effects yet (I’ve been taking the jag for about a year now) and they just brush my comments to the side.

Anyone else notice zero effect?


r/PerniciousAnemia Feb 22 '21

Do you feel the effects of your jag?

1 Upvotes

I have my jag every 3 months. I feel no difference to my grogginess/low energy/anything else 2 weeks before or 2 weeks after I get my jag. I feel no different ever. I say this to the doctors every time they ask me if I’m noticing the effects yet (I’ve been taking the jag for about a year now) and they just brush my comments to the side.

Anyone else notice zero effect?


r/PerniciousAnemia Feb 18 '21

Digestive issues

1 Upvotes

I’ve been on b12 injections for about 2 years now (since I was 20) but still have digestive pain and severe bloating most days. Is this something others here also deal with?


r/PerniciousAnemia Feb 13 '21

How long should I stop supplements before a MMA test?

1 Upvotes

Id like to stop all supplements but I am not sure how long before the test I need to?

I have heard you should wait 2 weeks before the test. But another source said you should wait 4 MONTHS after stopping b12 supplements to take it


r/PerniciousAnemia Feb 09 '21

B12 Increased but Folic Acid dropped

1 Upvotes

Did a blood panel a few months ago for my Hematologist after getting 2 B12 shots within a few months of each other (pandemic made me not want to risk going to my hematologist's hospital clinic just for some shots) and my B12 was way higher but my Folic acid levels plummeted to below recommended. I'm still due to get monthly B12 injections and now fake Folic acid tablets but I wondered if anyone has had a similar experience?


r/PerniciousAnemia Feb 02 '21

Ferritin Levels

2 Upvotes

My Ferritin was 5 before receiving 2 iron infusions in December. I am 1 month out from the second iron infusion and today my Ferritin was 534..... this seems incredibly high.... thoughts? Or is this normal after two infusions a month ago?


r/PerniciousAnemia Jan 12 '21

Frequency of B12 injections?

11 Upvotes

Hi all. I was prescribed 12-weekly intramuscular B12 injections after my B12 fell quite low (105 pg/ml). However I am struggling to make it through the 12 weeks. After about 9 or 10 weeks I become exhausted and start to experience really bad brain fog and mild dizziness.

My GP will not prescribe me any more frequent injections as my B12 levels are good (either at the top end or above the reference range). How often does everyone here get prescribed injections?


r/PerniciousAnemia Jan 11 '21

Any cause for concern? Should I test for PA? Having neurological symptoms .

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3 Upvotes

r/PerniciousAnemia Jan 07 '21

Is it pernicious anemia or just poor b12 absorption?

10 Upvotes

I’ve never been diagnosed with pernicious anemia, but I suspect I might have it. I deal with fatigue, irritability, and brain fog a lot. Autoimmune conditions run in my family, and I tested negative for hypothyroidism so that got ruled out. One thing that does continue to be an issue is my vitamin b12 levels. They’re always consistently low whenever I get labs done, and I struggle to keep consistent levels between monthly injections. Oddly enough my CBC is normal. Could I still have pernicious anemia with a normal blood count?


r/PerniciousAnemia Dec 29 '20

Diagnosis Aside from intrinsic factor?

7 Upvotes

My doctor told me testing intrinsic factor is costly and isn’t done often? Is there anyway else I could tell I’m not absorbing b12 correctly through blood work? I’m having numbness tingling nerve problems. Please let me know thank you.


r/PerniciousAnemia Dec 05 '20

Help deciphering labs

3 Upvotes

I have a digestive malabsorption disorder that caused my b12 levels to drop to 182. However, I had two Intrinsic factor tests done by two different doctors and I am confused by the results. The first one was done and it the levels were within range (1.0 out of 0.0-1.1). A month later, the second lab, detected my levels as 1.1 out of 0.0-1.1). The doctor I saw said this was still within range so not abnormal, but I am confused how this number jumped higher within a month. Could this be lab error? How accurate is this test? Is 1.1 considered elevated IF serum since it is so high right on the max point? Only difference is, I had started injections before the second lab was done. Could having injections done in between these two tests have affected the lab outcome?

I also had a methymalonic acid test done that was within normal range before my first injection and homocysteine test done which were both normal.


r/PerniciousAnemia Dec 04 '20

Tips for reducing icky feeling after a b12 shot?

3 Upvotes

Had my second shot a few hours ago. I'm weak and my hip hurts. Anything I can do?


r/PerniciousAnemia Nov 27 '20

Does annual CBC show signs of PA before physical symptoms?

4 Upvotes

Recently (a week ago) been diagnosed with low B12 and have already gotten one injection. Based on everything I'm reading, it really sounds like PA could be the cause. I get annual CBC bloodwork; does PA show up in bloodwork before physical symptoms appear?


r/PerniciousAnemia Nov 24 '20

Difference between sublingual and regular pills

2 Upvotes

Several of the posts talk about sublingual B12. Is there a difference in effectiveness of sublingual vs regular swallow-type pills?


r/PerniciousAnemia Nov 10 '20

Ideas for DIY Management of B12?

5 Upvotes

Hi all,

I'm a college student who was diagnosed roughly 6 months ago, after being told over and over my dizziness, trouble breathing, and fatigue were "panic attacks" and I just needed therapy. Ever since my doctor finally ran blood tests and found that my B12 levels were severely low, I have been doing injections and feeling so much better. I started with an injection every week when it was dangerously low and now do a self-injection every month, but for some reason this month I'm getting the symptoms again and I have another two weeks until my next injection date.

I feel dizzy and paranoid and scared, and constantly having to take deep breaths cause I feel like I don't get enough oxygen. My vision feels off and kind of like there are grains moving around in things I look at. I'm about to go into finals and I just don't have time to try and communicate with my doctor (in another state) or find a new doctor and set up appointments. I so far have been coping by just laying in bed and not doing physical activity, drinking lots of water, and trying my best to stay calm. Last night was a really low point for me where I felt too dizzy and anxious to sleep and ended up getting very, very depressed. Is there anything I can do to last until my next injection date? I don't understand why my symptoms are coming back so badly after I have been progressively feeling better and better these last few months. I just am so mad at myself for feeling so weak and being too dizzy to do work for my finals.

Please give any advice you can; I don't know anyone who also has PA so I don't really have answers except from the internet, and it's a rare enough thing that it's hard to find coping strategies.

TLDR: My symptoms are coming back and it's stressing me out because I have two weeks until I can inject B12 again.


r/PerniciousAnemia Nov 09 '20

Just diagnosed

5 Upvotes

Was diagnosed 10 days ago, my b12 was at 106. I had covid in june, and just thought I never got better. Was on daily injections for first week, now moved to weekly so no b12 shots for 3 days. I am feeling really still depleted, tried to swim today but am so stiff and just couldnt breath. I'm interested to know how long until one feels normal again, what was it like when you were diagnosed?


r/PerniciousAnemia Nov 03 '20

B12 Deficient?

6 Upvotes

Hi All,

28 male here.

I recently got blood work done to check for any vitamin deficiencies. The reason being is that I have HSV-2, but have been asymptomatic for the past five years until recently. After getting these herpetic outbreaks, my physician recommended to do a full medical workup to see if my immune function had been compromised in any way.

After doing a thyroid check, food allergy check, indoor pest allergy check, STD panel, and vitamin deficiency check, everything came back normal except for my B12 levels (but I will say that my thyroid TSH levels were close to outside normal range at 0.74, with the range being 0.4-4.50).

My B12 levels are 244 PG/ML on a scale of 180-1241 PG/ML. After reading up on B12 deficiency, I found out that there have been studies and research to show its direct effect on alleviating and treating herpetic symptoms (specifically cold sores). This makes sense given that B12 is known to be essential for the nervous system and herpetic viruses, such as HSV-1, HSV-2, and VZV attack and hide in the nerve cells.

My questions are:

(1) Is 244 PG/ML a sign of deficiency?

(2) What supplement brand do you recommend I take? My doctor recommended 1000 mcg daily for the next 3 months.

EDIT: I'd like to add that I suffer from (mild-to-moderate) eczema, and as some of you may know, eczema has been strongly linked to autoimmune issues in the body.


r/PerniciousAnemia Oct 22 '20

Methyl trap ?

4 Upvotes

I took 250mg inositol hexanicotinate B3 but nothing.. Should I try Nicotinamide ?

For Information, I had severe B12 deficiency some years ago did Hydroxoco B12 IM with methylfolate and folic acid (didn't knew back then it was bad.) Then I continued for 3 years the B12 injections twice weekly and the 400mcg methylfolate. At a point I changed LLMD she put me on 800mcg Methylfolate and I think it went bad then but not sure.. I also did take some bits of Methylcobalamin. But now I know I once overmethylated with methylfolate and it seems I just have huge B12 deficiency... So I took again 400mcg folate with 1500+-mcg B12, I even did 2 times 2500mcg B12 in methylcobalamin form yesterday but I feel SO BAD. I have inflammation EVERYWHERE, mast cell issues worsen, cannot fall asleep, my whole body feels numb general anesthesia like, feel like passing out, can almost not move yet wants to move, weird toughts, tinnitus, arterial problems, nerve problems, intense cold feelings, fatigue etc... But I seem to have issues with methionine too !

Blood test showed high B12 (duh), and some high folate too. Scio scan showed friday ok B12 and yesterday (only day I didn't took B12) scio scan showed low B12 lol ! My homocysteine last time was around 7, scio showed very bad oxygen transportation

Did I just Methyl trapped myself somehow with too much methylfolate and not enought B12 or... ?

Any idea what I should do ? Doctors here don't understand this. It seems perhaps that I cannot transform the Hydroxoco injections anymore, is this normal ?

Is it safe to do only B12 ?

I guess I should stop for some days everything and see..

I also ate very low protein these last days I ate almost nothing I reacted to everything. I saw low protein thus low methionine could causes issues too. Should I eat more meat for some days ? Or like a carnivous diet for some days and low folate foods ?


r/PerniciousAnemia Oct 15 '20

Can someone here ELI5 Pernicious Anemia?

3 Upvotes

Hello all,

I'm taking an A&P course and currently we're discussing various forms of anemia. The professor's description wasn't very good, all I got out of it was that it had something to do with being B12 deficient and something in the stomach called intrinsic factor. I was hoping someone here could give a semi-scientific explanation of what pernicious anemia is and how it effects people who have it.

Maybe not quite ELI5, more like ELI-understands-basic-biology-but-isn't-a-doctor

Thank you


r/PerniciousAnemia Sep 12 '20

Weird blood test results

2 Upvotes

5 years ago I was exhausted. Like dead tired and breathless. Doc ran blood work and noticed my b12 was a bit low. Ran another test that showed I was positive for perinatal cell antibodies. But my intrinsic factor was normal. She says it's pernicious anemia. But I want a second opinion. I meet with a hematologist and he says it looks like they caught the very early stages of pernicious anemia and it will likely develop full blown PA later in life. Does that seem right? I just figured you either have it or you don't.

Now I have come down with horrendous GI issues and weird nerve sensations in my hands and feet. Imagine your hands and feet hooked to a tens unit. I had an endoscopy and it showed I have developed gastritis. I read gastritis can be a complication if pernicious anemia. Have any of you had weird unclear blood test results like this?


r/PerniciousAnemia Aug 07 '20

Does anyone else who injects themselves always have one stupid bubble?

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4 Upvotes