please help! One sided issues more. Need advice

[Shordae]

I'm low on ferritin (20) I was told I can't inject because it's low?

My b12 was low 232 in 2021 with high mma.

Last year when all my neuro symptoms started it was around 390 for b12.

I took supplements a few times, it raised to 630 and then got one injection on 6/2024. One month later my b12 was 298. Weird.

Any way, I started a few injections and then many group admins told me I couldn't because my ferritin is low. It was last checked at 20. So I stopped

My folate is over 20. It was 26.4

My MCV runs on the high side and my mch is also closer to high range. My mcv has gone a point or two above range and then normalizes.

I'm suffering badly and worried I have something else wrong and it's not b12 deficiency?

Over the years I have had balance issues for years with lightheaded and feeling like I will pass out along with adrenaline rushes. I also had an urge to clear my chest/throat on the left side like I had congestion, I didn't sweat properly and one underarm would get sticky and smell bad. I went thru a big amount of stress and then shortly after my symptoms came on. My symptoms came on pretty quick in Jan. Tingling in hands and feet. I would also have my hands fall asleep when sleeping. I had a menstrual cycle and then my legs got heavy and numb feeling, I felt vibration from belly button down and aching in lower back. I ended up having another menstrual cycle two weeks later (never happened before ) after that cycle I felt like liquid was being poured down my back, and was having a lot of PVCs (skipped heart beats) and I was having shivering like I was cold but I wasn't, I could stop shaking.

Then less than a month later I had tingling numb sensations on my left shoulder blade and left side of chest. It felt like static on a tv constantly or a really fuzzy feeling. Went to sleep with it woke up with it.

My skin almost felt like sunburn or like a numb sensation and touching it felt weird.

Then it quickly went to my left side of face left arm. I also had a few episodes where it was full on pins and needles down my left side of face arm/left chest and left back. Even the left side of my tongue. Then a few weeks later I started having what felt like menthol cool burning all over in random spots. A fan made this worse. I feel like the left side of my head feels different. At one point I forgot for a few minutes who my husband was. My hands and feet are really cold and clammy.

Doctor did an EMG and NCS and it was normal, however I had a postive biopsy for small fiber neuropathy. I refused the meds to cover up symptoms and asked the neuro to keep checking to find a cause, he gave up and discharged me.

I take a very low dose of b complex without only 100% rda amounts for b vitamins to hold me over. I took one more injection 12/5 and haven't done any since the advice of admins was my ferritin isn't high enough and it will make me worse.

I don't tolerate a lot of medication due to having MCAS and have a fear of taking things. Magnesium oxide made me feel like I had an arrhythmia, and I tried magnesium carbonate and it gave me severe issues with my esophagus.

My hands and feet have started to sweat and my legs and feet have begun to ache a lot. Extremely bad fatigue.

the tingling and reduced sensation is all over my back/chest/shoulders and hands and feet and left side of face

I had a normal parietal cell, MMA, intrinsic factor. Normal MRI of brain and spine besides disc issues and some stenosis.

As of yesterday the left side of my body feels even more numb and weird.

I feel so detached from my body and out of it.

im truly convinced I will die quickly I don't get help. I'm weak, shaky, anxious and not living my life like this.

Can anyone advise? Is this possible b12 or something more sinister?

I have injections at home 1000 cyanocobalamin.

Thank you

[Oneash]

I'd certainly recommend hydroxocobalamin as being much more effective than cyanocobalamin. Remember blood serum B12 tests are not super accurate. Though it does look like you can respond to pills. You need to take a separate high dose one daily and not rely on the level in multivitamins.

The only reason anyone would tell you to stop taking B12, both injection and tablets, is if you want a clear baseline value from what you are absorbing from food. 390 is in the 'normal ' range, but low, over 550 is a healthy value. But much is recently discovered about how you can have normal blood serum, but it isn't functioning e.g. getting through to the cerebralspinal fluid, which is when you need to flood your system with injections.

I did respond to oral supplements earlier in life, but now need injections.

Depending on what your body is dealing with you could easily use up an injection in a month. And yes all your symptoms point to anemia, just not sure which one.

I would say choose a direction, high dose pills or injections and do whichever consistently to get your B12 up.

As to your low ferritin, an intravenous iron infusion might be worth asking about. It's important for calming MCAS to get your iron levels up.

MCAS mast cell activation syndrome ( I'd not heard about this before) can cause both vitamin B12 deficiency and iron deficiency.( I'd be wondering what was chicken or egg.) So if this has been diagnosed, are you getting any specific medication for it? e.g. mast cell stabilisers or antihistamine. What tests did they do? Or do you think this is wrongly diagnosed Pernicious anemia?

[Shordae in reply to Oneash]

I don't know. I had high prostaglandin d2 and high n-methyl histamine and chromagranin a so they diagnosed me with MCAS. I don't have allergic reactions thank god, but I don't take MCAS meds besides lorazepam as needed in a very tiny dose.

[Gambit62 Administrator]

Shordae, please note that this forum is not a substitute for professional medical advice. If you can't talk to your GP then suggest you try a pharmacist and ask about interactions of medications etc.

[Annamaudebug]

I’m in California, so our medical services are different. I suggest you have your TSH (Thyroid Stimulating Hormone) checked and your T3 and T4 levels. Also, low iron can cause the same symptoms. I had to endure 26 shots, one per week, switching from hip to hip with a humongous needle of iron. Please don’t do this if you can avoid. The shots are extremely painful, cause bruising and an orangish tattooing that took years to dissipate. I now take liquid Floradix by Salus, a company in Germany. Doesn’t taste good to me, but it really helps me keep my iron up. Dr thought I might have a slow bleed somewhere internally just enough to keep my iron chronically low. I also take a prescriptive folic acid and have SI B12 for over 15 years. I use cyanocobalmin and have not experienced any problems with it. I am diagnosed with PA; iron deficient anemia, asthma, and gout arthritis, nutcracker esophagus and just had a lumpectomy for cancer of the right breast. Out of all of these, the thyroid has been the one that makes me the most miserable, followed by the PA. Good Luck it can be a rough road but ADVOCATE for yourself. No one else will.

[Shordae in reply to Annamaudebug]

thank you my thyroid levels have come back normal

[Nackapan in reply to Shordae]

So many if what you describe are neurological symptoms. Get back to see a neurologist .

It's s matter of elimination .

Good you've had brain Mri's

Knowing what to treat and time to improve maintenence .

Very difficult to seperate symptoms.

I would suggest keeping g a log.

I did this.

Then did trials of 2 prescriptions I thought appropriate .

Then weaned off if no help.

No idea why you were told not to inject b12 with a low ferritin level.

Iron supplements are ususlly prescribed to raise ferritin levels but takes time

Get every investigation you can .

Unfortunately specialists don't communicate with each other unless you are lucky enough to sed a general medical consultant often on A+ E departments.

They can join the dots.