I have been dealing with fatigue and forgetfulness for about 3 years and complained to my doctor at every visit. She’d check my thyroid but it was always fine. She’d tell me that I’m a busy mom and that’s just the way it is. I got diagnosed with GERD and Gastritis 2 years ago and I’ve been on PPI inhibitors ever since. The last 4 months I have felt like death. I had shortness of breath (I was convinced I had Covid but didn’t) dizziness, extreme fatigue, heart palpitations, hair falling out in clumps, shakiness, nausea and terrible muscle aches. 2 weeks ago I started losing feeling in my feet and hands. I actually felt numb on my entire side of my body and went to the ER convinced I’d had a stroke. I had trouble coming up with the right words to say and my tongue felt too big for my mouth. I feel like I’m in a fog. They told me I was stressed and needed to get up and power through each day... I called my primary doctor the next day and begged to see her. I promised it wasn’t anxiety like the ER said. She had me come in and recognized that my foot was completely numb. She ordered a B12 test and another test to look for auto immune diseases. My B12 test came back as deficient and she had me start over the counter supplements yesterday while we wait for the auto immune testing to come back. I asked about injections and she felt that supplements are just as good. I feel even more tingling today and my left cheek and lips are even numb. I just want to get on the road to feeling better and I see that many are getting injections. Would the tablets that dissolve under my tongue be better for absorption? I’m thinking I have celiacs disease or something digestive that’s causing my deficiency, due to all of my stomach issues. I’m worried that the supplements are not doing me any good with taking acid blocking medicine. But she didn’t seem to want to give me shots. The receptionist literally said, “do you reeeallly want to give yourself shots everyday! I wouldn’t” 😫🤷♀️ Oh and how long does it take to feel relief... I feel like I could die in my sleep and I lay awake most nights out of anxiety. This is awful!
Just diagnosed - shot or supplements? - Pernicious Anaemi...
Just diagnosed - shot or supplements?
Hi JBCADR welcome to this community.
Are you in the U.K?
If the cause of your Vitamin B12 deficiency is due to an absorption problem (possibly via the PPIs) with your digestion then the tablets will not be as efficient as injections.
Give the tablets a go but if there is no improvement go back to your doctor with a list of all your symptoms and demand injections.
Your receptionist is talking through the top of her head. If you are started on injections, once your levels are returned to normal, "maintenance" injections are usually administered thereafter every 2 - 3 months.
I am not a medically trained person but there are others on here who will be able to give you good advice.
I wish you well
I am in the US. We can get B12 supplements and sublingual over the counter, but I need my doctor to prescribe the shots. My neurologist told me that I had to demand that she find out the reason behind my deficiency, but I’m assuming it’s digestive related. She’s supposed to get back with me on Monday with the results of more bloodwork. I’m going to see if I can start on shots to boost it faster.
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), Pancreatic insufficiency, 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.
Apart from the italicized above do you "see yourself" with any of the others?
I could honestly see myself as having celiacs disease. I actually went completely
Gluten free to help
With my GERD for about 3 months before Covid hit our area. I was feeling great and had energy. Then it became hard to get groceries and things were picked over in stores, so I went back to eating normal. That’s when all
This really kicked up. I called my Gastrointenologist and they haven’t returned my call yet. I know it’s something with my stomach issues.
I hope you will "get it sorted" soon.
Take care and stay safe
Thank you!
HI, I'm here in the US. Demand that your doctor give you shots. You need loading doses and then one shot a month for the rest of your life. There is no reason for your doctor to not give you shots if you need/want them. If your doctor won't give you shots, find another doctor who will. In the meantime, if it's not a financial burden, check with your local urgent care location, Patient First, etc.. and ask if they give B12 shots without a prescription. If they do, start your own loading doses and then find another doctor.
Injections will bring your levels up quickly when you have so many symptoms.
I was also told I'd had an anxiety attack in Casualty.
Te doctor should surely treat your symptoms a d quickly.
Perhaps the doctor thinks the ppl are the only cause for low b12. ??
Take high dose oral b12 whilst trying to get injections. No idea though if you csn absorb . Tablet or sublingual not a huge difference
The doctor should be treating your symptoms
Many more on here will advise
You also need a referral to a neurologist if the doctor has not done this.
I have seem the neurologist and he recommended the shot. When I called my doctor back to ask, that was the response I got. I’m going to ask on Monday about starting out on shots to get it back up quicker.
So the neurologist wanted you to have an Injection!
Hopefully he/she will inform your doctor.
Yes they said that they always recommend injections. I’m just worried because my neurological symptoms came in very fast and progressed quickly. I’m worried that a few more days waiting over the weekend will mean more damage. I’m going to at least get the sublingual tablets tomorrow to try for the next two days until I can hopefully convince my doctor to switch me to shots.
Yes. The recommendation here in covid as some people have had their Injections stopped is 1000mcg b12
Do you eat meat ?
Are you vegan or vegetarian? If so, take the B12 tablets. I would start on three a day, with meals. It may take several weeks but your symptoms should slowly fade.
If you do eat plenty of meat/fish then your problem is that your doctor is an idiot. Ask her why you have a severe B12 deficiency if you’re eating a lot of it.
The answer is that you have Pernicious Anaemia. You cannot absorb B12 from food or pills (or under-the-tongue B12). You need injections. And you need injections as soon as possible. All the time you are lacking in B12 your nerves are getting damaged. If you’re lucky the damage can be repaired by the injections.
I’m not vegan and I have a history of gastrointestinal issues. I take PPI inhibitors so there’s no acid in my stomach anyway. This is what scare me! I wanted the shots. But she called this morning and basically
said research shows that the supplements are fine in younger people. I’m losing feeling in my hands and feet and I’m waiting on a pill to digest in my stomach that probably won’t digest it. 😩
Hi,
Some B12 websites that may be of interest.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Think PAS has some members in US.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Overseas members can use online contact form.
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
B12 Deficiency Info website
B12 Awareness (US website)
B12d.org, a UK charity, holds support meetings near Durham, UK.
It has an online Zoom meeting on 13/7/20 aimed at US time zones.
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
B12 article from Mayo Clinic (US)
ncbi.nlm.nih.gov/pmc/articl...
Suggests
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable.
3) Successful treatment should not be stopped.
B12 books I found useful
The first three are written by UK authors so may have some info eg reference ranges and units of measurement specific to UK.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access for PAS members only.
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog about PA, mentions SACD.
martynhooper.com/2010/09/21...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Have you had
1) tests for PA and Coeliac (Celiac in US)?
If you were tested for Coeliac in past, were you given following tests?
TTG IgA test which looks for a particular antibody to gluten
Total IgA test which checks who has IgA deficiency
People with IgA deficiency who have suspected Coeliac disease will need alternative tests for Coeliac.
Were you told to eat plenty of gluten in more than one meal per day for several weeks before blood was taken?
UK guidelines suggest patients do this to ensure that there are plenty of antibodies to gluten in the blood in those who have Coeliac.
2) Have you ever been tested for H Pylori infection?
3) Any exposure to nitrous oxide?
4) Any chance of internal parasites eg fish tapeworm or Giardia Lamblia?
Have you ever eaten raw or uncooked fish eg smoked salmon/sushi etc?
Have you ever lived or stayed somewhere where internal parasites are common?
5) Any family history of PA and other auto immune conditions that affect the gut eg Crohn's?
I am not medically trained.
I got a complex B 12 shot today at a local spa. I just paid out of pocket to see if it would help. My tongue is less swollen and my appetite has returned. I ate lunch and dinner. I haven’t eaten a meal without feeling nauseated in weeks. My mental clarity is improving and I found myself actually engaging in conversations with my husband and not tripping over my words as much. My numbness is still there but I know it will take time. I actually feel like my foot could be more numb in my other toes than it was before. But at least I know the injections make a difference much faster than the supplements. I was getting worse instead of maintaining or feeling better. Would you recommend taking a sublingual or spray B12 tomorrow or just wait until I talk to my doctor on Monday? I’m going to demand shots. Also, what’s the normal shot schedule with neuropathic symptoms? If my doctor isn’t willing, I was told the spa can use my bloodwork and submit it to insurance to get the shots covered there. I may go that route!
Please read my first reply If you haven’t already!
Cleveland clinic standard loading dose is once a day for 7 days, once a week for a month and once a month for 6-12 months. You need this!!!!
Oh and I’m going to request a test for MTHFR. Apparently it runs in my family. Should I take a folate supplement too? I think it was in the b12 shot I got today. I paid more for the complex one. Hopefully that was ok! 😂🤷♀️ I have no idea what I’m doing, but it’s better than what my doctor was failing to do.
Also ask for MMA test. If it is high it confirms b12 deficiency!
The acid blocking medicine has caused your B12 definciency, you have been taking it over 2 years, they have know clue what these things do to our bodies, PPI's lower our B12 and that's a fact.
having not had my B12 inj.for over 6 months I became very ill and frightened symptoms like yours I was diagnosed PA at least 20 yrs.ago have G.O.R.D. and ass.symptoms was prescribed antibiotic without tests and became so ill had an vitB12 inj last thurs.Still not well but a bit better am going to ask for blood work and more inj. This is a deadly disease and my advice is get the test done privately so you can show your Doc. if not listened to change your Doc! gardenerhome
I am going through almost the same experience. I have been feeling tired and out of breath for ages. about 3 weeks ago I started to get a mild tingle now and again on my left foot. By last Wednesday I could feel it in the left side of my body. Now the tingling is in both hands and feet going up the legs. It’s even coming and going around my lip and tip of nose with funny pressure feelings on face. I feel fatigued and anxious. GP ordered blood tests including B12 deficiency which I had today and waiting on results.
I’m too scared to go to sleep. I didn’t sleep at all last night. can barely eat with the nausea. If my blood tests come back normal I’ll be terrified cause I just want answers.
I hope things start to feel better for you, these symptoms really are horrendous.
I can’t believe your doc said about you being a busy Mom - my doc said THE EXACT SAME THING! I was suffering immensely - at the doc 5 times in 4 months - severe fatigue, horrible muscle aches in my legs, couldn’t balance right, couldn’t walk a straight line, legs felt like heavy bricks, brain fog, burning tongue and tingling in my cheek, feet and fingers. I could barely get through the day without thinking I was slowly dying!!!
I went over my doctors head and went to Cleveland clinic and the neurologist put me they MRIs for Brian and spine to check for MS and tested me for b12 - my level was low and also she texted for MMA (methylmalonic acid)’and that was very high and she said these two things equal a severe deficiency. I was given injections for 7 days in a row, then once a week and now I’m on once a month for a year with bloodwork to monitor progress. I felt amazingly better about 10 days in. She said tablets and sublinguals won’t work because I’m not absorbing it in the first place. You need injections now!!! I agree with the other comments - find a neurologist - not just a doctor - they know b12 deficiency symptoms very well. I feel for you - I was sure I was dying!!!! Do this today if you haven’t already! I’m following you and can’t wait for an update!!!! ❤️
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