B12 deficient, follow up appointment

[LilliRaindrop]

I went to the dr for an appointment/shot. She isn’t hearing anything I’m saying. She took me off the shot and gave me the sublingual films. Bc I told her after I got the shot I went to sleep and then was an emotional basket case for roughly 5 days. He first and final decision was “I’ve never seen anyone react this way with B12” and I’m not injecting you. I asked for my lab results but I got side tracked and forgot. She didn’t hear when I tried explaining that B12 is that low then I need basically a mega dose to help correct the neurological effects. And to not feel worse when I take it. I feel today was a waste of everyone’s time. 😐

[clivealive Forum Support]

Hi LilliRaindrop how many B12 injections have you actually had now?

Has your doctor measured your Folate level?

If you can get your lab results and post them here there are others who will be able to advise you.

I am not a medically trained person.

[LilliRaindrop in reply to clivealive]

I only had one injection last week, but bc it made me an emotional wreck she said no more injections, sublingual films. I’m working on lab reports (I think she sidetracked me on purpose) when I asked her about the tests all she said was I ran a lot of random tests on you. But didn’t specify which ones. I wrote everything down I needed to ask and what not but she took the paper glanced at it and handed it back (rather fast)

[clivealive Forum Support in reply to LilliRaindrop]

I cant say I've experienced the same feeling of being an "emotional wreck" as you describe after an injection of B12 - I have had over six hundred during the 46 years I've had P.A - but they certainly can be a mood changer for a period.

Do you know why your B12 was so low?

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Can you "see yourself" among any of the above people?

[LilliRaindrop in reply to clivealive]

I was on proton pump inhibitors (chronic gastritis) Delixiant for 3 months I took myself off of them and controlled this with diet, have had still have stomach issues (cause unknown) everything was negative. I kinda gave up on that. Then I passed out (fell over like a goat on my foot) had surgery and here we are. A lot of unanswered questions. I don’t know the whys or how’s of much. But as frustrating as this is thankful for this site. I’m going to get to the bottom of this one way or another. 😊

[clivealive Forum Support in reply to LilliRaindrop]

Were you given a General Anaesthetic with nitrous oxide during the surgery as that may have affected your B12 level.

google.com/url?q=https%3A%2...

Certainly the PPI will not have helped as B12 absorption need high level of acid.

Try drinking a glass of water with a few drops of Lime Juice with your meals.

I'll bid you goodnight now.

[LilliRaindrop in reply to clivealive]

I keep forgetting we’re on opposite sides of the world. I’m doing the lime /water thing. I don’t think I had nitrous oxide or I really don’t know. I had an IV and went to sleep then I woke up had a screw in my foot and a Nerve block. Kinda wish my orthopedic team could help me with this. They were all awesome. On the upside I’m not crying over a can of peas. Just tired.

[Highland49]

Do you have neurological symptoms of pins and needles, numbness and/or balance problems? Neuro symptoms need to be treated by injection and as per the BNF/NICE guidelines of alternate day injections until no further improvement.

Can you ask for a print out of your blood results? You are legally entitled to these. Other cofactors of folate, iron and ferritin to be optimum range to support the injections. Has your vitamin D been checked? Acute reactions can be due to low potassium but that wouldn't usually cause an emotional reaction.

If you have an absorption problem, sublingual tablets will not help to address your deficiency as the body is unable to absorb. There are better tests for b12 deficiency and pernicious anaemia but sadly you need to have been off of injections or tablets for 4 months otherwise a false reading will be given.

There's other more knowledgable people on here who can advise about testing plus more information on other posts. I've learnt loads from this forum and also a Facebook group New Beginnings B12 Deficiency Information and Support Group. I know from first hand experience how frustrating GPs are as they fail to listen to their patients. I had debilitating symptoms and still have and have had to do battle with GPs over b12 deficiency and thyroid issues.

Good luck.

[LilliRaindrop in reply to Highland49]

Thanks, I’m working on getting my lab work results. As of this moment I’m waiting on a call I know my Vitamin D was a low (I have no numbers for anything) yes I have neurological symptoms (I’ve been ignoring bc my age, and I had limited mobility for 7 ish months, I have a new screw in my foot) I don’t have the tingling but loose balance and get dizzy frequently. And “old lady brain” my kids call it. It’s frustrating. As from what I am learning the treatments she’s doing isn’t going to help me bc it’s normal dosing. I’m going to work on this on my own I guess. Maybe she thinks I’m lying or crazy. 😐 don’t know the cause of this maybe I just don’t know her plan with me but I am impatient and I need to feel better. It would be so really be easier if me and doc were on the same page.

[designer8 in reply to LilliRaindrop]

My God! Do we have the same doctor? It really seems a lot of them have got something against B12 injections - and making us feel better.

I have the same symptoms as you, LilliRaindrop - mostly neurological (dizzy, balance, memory issues, fuzzy), but others that I never put down to B12 deficiency, but am now (foot pain, numb toe, muscle wasting, etc.). Last Thursday my GP seemed a bit more receptive and told me we were going to "flood my system" with B12 - 1000mcg per week for three weeks. I don't call that flooding, and so took it upon myself to feel better, and have been injecting 1000mcg per day since then. I've felt better mostly, on/off, but yesterday actually had another 1000mcg late afternoon, which made me feel much better. As mentioned previously to you, I think, these were all done IM (the previous five weeks of subcutaneous were't working). Maybe it's time you found a different GP?

[LilliRaindrop in reply to designer8]

Maybe we do have the same GP. I do need to find another one. I was trying to give her a chance (she’s new 😕) She randomly did tests (bc she had never seen me before) But she thinks my symptoms got worse from the shot (they did) but likely bc I was so low. Still working on my lab work. So no shots. Since I technically can’t over do it with the B12 im going to just get my own levels up. I guess I was hopeful that she would listen to me and try to answer my questions. But that would be a big fat negative. It would be easier to have everyone on the same page.

[designer8 in reply to LilliRaindrop]

It should be easier. When I was trying to get rid of my symptoms some weeks ago with self injecting, my dizziness and the feeling that I was losing my tiny mind got worse before it started to get better - and I have seen many experts on this site say this happens (well, maybe not the tiny mind bit... ). It seems like you tell them you're worse and they freak out and think you must be allergic to it or something, and stop the only thing that is going to make you better. Take care of yourself x

[Highland49 in reply to LilliRaindrop]

It transpires that GPs know very little about vitamin deficiencies and supposedly have only half a day training in that area. Perhaps your GP is failing to realise that balance problems is still a neurological symptom and should be treated as per the BNF section 9.1.2 guidelines.

Just thinking about your reaction to the injection, you could check out two different types of b12 by sublingual tablets to see what helps. When I had my balance problems, I first took methyl sublinguals but they seemed to make the problem worse. One of the admin ladies at the b12d charity suggested I tried hydroxocobalamin, which is the same type as the NHS injections. They helped within hours. Others have found adenosylcobalamin helped other symptoms so they take with methyl or hydroxo.

Then you'll know what type will help your symptoms with the injections but sadly, methyl injections are more expensive if you have to go down the self injecting route.

Good luck!

[LilliRaindrop in reply to Highland49]

Thanks, Its very believable about the training they recorvette. I guessing it’s a hit or miss until you figure it out on your own. I will get there one way or another. Apparently most of on this site will figure it eventually. Im kinda baffled that there are so many people not having the help with the physicians. 😊

[Highland49 in reply to LilliRaindrop]

All the best, it does take time with all this and there's so much help out there but alas, not usually from GPs 😉

[palmier]

How strong are the sublinguals you get? I think that's what matters most, but it's just my personal understanding, not a professional one. It's a huge difference between say 1000 mcg a day and 15000 to 30000 that some people seem to take. Keep in mind that you may absorb only around 1 %. Perhaps gradually building up to a higher dose is safer, just a thought.

[LilliRaindrop in reply to palmier]

1000 mcg not sublingual like I thought just vitimans that I could have purchased on my own from just about anywhere. Thanks for the tips. I’m taking 2 daily. The prescription label says 1 (I’m such a rebel 😂) but I’m going to gradually go to higher I do know I only have the tired “old lady brain” and the tears are gone. My crying eyes over simple stuff (lost a can of peas and thought I needed to be committed) is for the birds. 😊