I’m very new to all this.

[DiscoBunny]

Hello. I’m new to this group and would like to share my story.

I had my annual exam in late March. I had labs drawn and B12 was checked as I had been low once about 8 years ago. I never received any results or call so I figured everything was fine.

Well, I hadn’t felt particularly well since about January but chalked it up to post holiday fatigue. Since I had my labs checked in March and didn’t get a call, I thought it must be in my head.

I continued to feel worse throughout the year. Dizzy. Foggy. Tired. Pins and needles intermittently and at times I felt off balance. I had numerous trips to my immunologist because I began having an exacerbation of my existing mast cell disease and figured maybe that was why I was feeling so poorly.

I started losing weight rapidly in September- from heartburn and nausea and no appetite. I behan having terrible pain with my menstrual cycle and my mental health was slipping. I caught pneumonia and ended up in the hospital where I was found to have abnormal MCV and MCH and RBC of 3.8. Was sent home with antibiotics and nothing else.

After the hospital, I went online to the patient portal to check my labs. My B12 in March was 174. I’m on high doses of Zantac (H2 blocker for mast cell disease) and it occurred to me that I was probably very deficient.

I couldn’t get an appointment with my primary because she was on vacation for 2 weeks. I couldn’t wait that long. I don’t know how low my levels dropped since March and on high dose Zantac, but I’m assuming pretty low based on the severity of my psychological and neurological symptoms.

I am on my 5th week of sublingual methyl B12 1,000 mcg. I also take magnesium and eat a diet high in potassium as I’ve had problems with hypokalemia in the past. The first 2 weeks on SL B12 were not good. I felt lethargic and slept 12+ hours. Lots of tearfulness and panic attacks. Couldn’t go outside alone. Couldn’t (still can’t) drive.

I feel like things are turning around though. I’m not sleeping all day. My shortness of breath is definitely improving. I’m starting to get an appetite again. I’ve had some intense panic attacks on the B12 but the benefits outweigh this side effect. My skin is starting to break out in deep, painful pimples now, but again, I’ve only just started recovering and don’t care if this is a side effect.

I have ordered a SL spray with Ab in addition to the SL methyl I am taking. My doctor has told me she won’t do shots because “oral is just as effective”....yeah, ok. My father does have pernicious anemia and has done well for the last 10 years on a monthly shot.

I didn’t expect to feel this poorly at age 32, but I have some hope based on what I’ve experienced so far, that I can slowly recover. I just wish I had been notified about my low level back in March and also wish I had known sooner about Zantac contributing to deficiency.

[clivealive Forum Support]

Hi DiscoBunny Are you not in the U.K? - the U.S. perhaps?

Does your doctor know that your father has P.A. as it may be worthwhile to have you checked for "Intrinsic Factor Antibodies".

Do you know the range used <from -- to> when your B12 level was 174 in March?

Was your Folate level checked at the same time?

A wiser person than I has posted previously:

The pimples/acne, is likely to be caused by microbes on your skin reacting to the additional B12 by producing substances that your skin is then reacting to. In theory this could be resolved by use of a good skin wash. You might have better luck talking to your pharmacist and seeing what they can recommend prior to your next maintenance shot - though there is always a chance that it was something that won't recur.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[martinec in reply to clivealive]

Also get tested for parietal cell antibodies. This is one of the other causes of PA, it will also indicate autoimmune gastritis.

Try to get a full blood panel done - check folate, vit D levels as well as iron and ferritin. Remember to always get copies of your test results. You are entitled to them and this is very important. Never accept your doctor’s answer that your result is ok or normal. You could be on the low end of normal of the reference

range which would not help you at all.

Optimal range means the upper third.

You need to be taking folic acid or folate to help with the B12 process, very important.

Also important:

Vit D (ideally with Vit K and calcium if you test low for calcium),

B-complex (low in B6 as it can be toxic in excess)

Oral B12 is usually not a sufficient form of supplementation, also much more expensive that injections.

Skin issues are a common side-effect of B12 supplementation but should settle down in time.

Good luck! x