Not anemic

[CDALY474]

Hi!

Not sure if I’ve asked this before but I’m so new to this. I went to doctors 7 weeks ago for lightheadedness and leg weakness. After about 3 weeks they finally checked my serum B12 it was 126. After searching through my labs I noticed they drew a serum B12 in 2016 and it was 158 and they never said anything. They gave me a tablet of cyanocobalmin and I immediately felt like I was coming out of my skin and very agitated. Long story short I ended up at the emergency room where they tried to inject me with cyanocobalmin and ended up having to call a rapid response because my heart rate was over 200, high blood pressure, dilated pupils, uncontrollable shaking...my doctor has sent me to neurologist, hematologist, GI...they all say something different. I called my doctor saying I can tolerate Hydroxocobalamin tablets no problem please give me Hydroxocobalamin injections as clearly I am not absorbing B12 from food. (Not began or vegetarian and eat lots of meat, dairy, etc) she refused and said she doesn’t think it’s a B12 problem. I switched doctors who said he didn’t know if it was B12 either but was willing to order me the hydroxcobalim injections. I am waiting for that to come in as it had to be ordered. In the meantime, my labs show I am not anemic (that’s what doctor said I’m not sure what lab that would be). My ferretin was I believe 63? I’m just wondering could the lightheadedness and leg weakness/weird sensation be from low B12? I thought lightheadeness was because you were anemic and apparently I’m not. Help! I just want my life back!!

[Nackapan]

Your ferritin is fine.

In short yes all those symptoms you describe can be b12 deficiency

I had vertigo and extreme dizziness at the start. I

My iron HB was also okay . I did not have megobalastic anaemia either.

Have you had folate checked?

Low b12 also can cause anxiety . Look at the list of symptoms on PAS .

Symptoms overlap with other conditions and do have to be ruled out

If the medics font 5think it b12 deficiency what do they think? If Hydroxocobalamin injections ate now in order hopefully they wi suit you.

If symptoms improve tiu have tiur answer.

Did they bother with the I trinscic antybody test or MMA ?

[CDALY474 in reply to Nackapan]

When I asked doctors if you don’t think it’s b12 what do you think it is and they said they didn’t know! I was so angry with them. I am out of work because I am so lightheaded/dizzy (not room spinning dizzy just feel off) and I’m probably going to get fired if this isn’t figured out soon. They have had 7 weeks! They checked intrinsic which was negative and mma BUT they didn’t think to check mma until after I had taken the one tablet it Cobalamin! At the time when they said it was b12 I was so excited to feel better they told me to take it immediately and I did. And of course they call back three hours later and say oh did you take the tablet we need another blood test. I said yes you told me to. So that came back normal. Folate was 11.8

[Nackapan in reply to CDALY474]

Yes very frustrating and scary.

So let's hope the injections arrive soon. I didnt get the intrinsic factor test either.

I was told anxiety attack in a and e.

Have you been referred to a neurologist or had any mri scans?

Can you walk okay. ? Hopefully you will respond we to the injections. Meanwhile ruling out other things .

[CDALY474 in reply to Nackapan]

I saw neurologist he originally said yes this is absolutely low b12. But I think my gp got into his head and at last appointment he said he isn’t sure and to follow up in 2 months. It’s awful that he knows my symptoms are getting worse and no intervention is being taken (he didn’t know I switched doctors to get injections) and he wants to see me in two months? So I’m supposed to suffer for that long? He along with hematologist also said if it was b12 your symptoms would have been gone by now because your b12 is now 266 (this was after taking 2000 mcgs a day for three weeks by mouth) I don’t think that’s high enough. And if they are claiming absorption problems then why would I absorb by mouth. Yes I was told by ER it was psychosomatic. I am deff not anxious (except to feel better and know what is going on) has MRI of brain and entire spine and that was fine. Walking okay but end up having to sit because of the lightheadedness

[Nackapan in reply to CDALY474]

Keep going g back if your symptoms are no better despite absorbing some from tablets. I agree 2 months is too long to wait.

I hope you get sorted soon. Good your Mri was okay.

[Kamnag in reply to CDALY474]

Yes, everything you describe fits B12 deficiency. As a physician and a B12 deficient PT myself, I can tell you that most physicians out there can’t truly give you a definitive answer simply because they don’t know. B12 deficiency is complex and the symptoms are extremely variable and broad, different people present in different ways because B12 is so essential for so many physiologic processes. My humble advice to you is go get weekly injections for 4 weeks, then monthly injections thereafter and monitor ur levels from there as you try to find the cause of why u are nit absorbing b12. My Neurologist, who Is excellent, told me “no one should have b12 level less than 400”

I have been thru a lot last year due to law vitamin b12 (210). I have been doing injections and now my level is in the 500s. I now feel much better, though I’m still recovering, as you know it can take a good couple Years to recover neurologically.

[Gambit62 Administrator]

The difference between the two B12 tests is bordering on being within the limitations of the lab test (only 20% accuracy). If you had an absorption problem then I would have expected to see a much larger drop over 4 years, ie your levels would be undetectable. Some people naturally do sit below the normal range because the normal range is where 80-90% of people are so that means 10-20% are going to be okay outside that range.

Anaemia is investigated by doing a full blood count. However macrocytic anaemia isn't present in 20% of patients with B12 deficiency when they first present.

B12 deficiency also affects the nervous system so it can affect the autonomic system so dizziness can happen without anaemia as well.

Basically, I would have to say that B12 isn't an obvious call at the moment ... but I'm not a medica.

Hope you do succeed in getting some answers. It may be something genetic going on - there are a number of genes that are known to mean some individuals need to have much higher levels of B12 for specific processses to run smoothly but that really is beyond the scope of this forum.