Hi About 2-3 years ago, during lockdown when it was difficult/impossible to see a GP, I started taking B12 supplements 3-4 times weekly.
Whilst not wanting to diagnose myself, I felt I had little choice given the GP situation, plus my daughters are B12 deficient, and had the same symptoms as myself.
More recently I got access to my online blood test records, and my B12 was around 265 (the year before I began supplementing) but the GPs deemed that sufficient.
I was experiencing many symptoms - fatigue and tingling and breathlessness and tinnitus amongst them.
To complicate things, I was diagnosed with Hashimoto's around this time, and am now on Levothyroxine for that.
I have been regularly private blood testing to keep an eye on my vitamin levels, both my ferritin and vitamin D are low, so I supplement those also.
As my B12 levels have been high-ish since taking the supplements, the GP said my symptoms were unrelated, she did a test for Pernicious Anemia back in July which was negative.
Anyway - my symptoms are actually getting worse - louder tinnitus/tingling from scalp to legs/palpitations/swollen 'ridged' tongue /fatigue etc.
I had a gastroscopy last December and was told I have mild Gastritis/peptic ulcer disease/hiatal hernia.
My recent Full Blood count:
Mean cell volume 97.0 fL [83.0 - 101.0]
Mean cell haemoglobin level 30.1 pg [27.0 - 32.0]
both these values have been creeping up in the last few years.
So my question is, could this be a B12 thing, even though my blood test results show high values?
Or should I be reassured that the B12 supplements are doing their job as the blood tests would suggest?
Many thanks
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Justine_Case
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My folate wasn't ever tested back then, and more recent private blood tests show it to be fine, around 50/60 % however I do take a folate supplement twice a week, so I guess that helps to keep it in range.
Yes the Hashimoto's complicates things, as I am not sure if I am just dealing with that, or something else.
I am aware that autoimmune disease often causes absorption issues - and I certainly seem to struggle with iron and vitamin D
Just not sure about B12.
I have tried to look on the internet to see if others have the same question - mid to high levels with B12 supplementation, but the B12 isn't being absorbed properly?
Honestly not sure if I have worded that properly, and have not got any answers.
I looked at a B12 symptom checklist, and tick off the majority!
But there is a crossover with Hashimoto's symptoms.
The main symptom that made me wonder if it is B12 (other than family history) was the tingling.
Anyway thank you for your help, I will look into the MMA thing.
Are you injecting or swallowing your supplements? My partner's B12 levels appeared fine on paper when he was taking high-dose sublingual B12 daily, but his doctor suggested we give IM a try, and he improved after we did. Subsequently we suggested to the doctor that he should inject the full range of B Vitamins (B Forte IM) and he further improved. His peripheral neuritis started to worsen some years later and we have now stopped his dose of Crestor (anti-cholesterol) because it has been discovered that anti-cholesterol drugs can block B3 (niacin) and cause severe peripheral neuritis. See this article, for instance: aan.com/PressRoom/Home/Pres...
Interesting what you say about a drug blocking a B vitamin.
I was put on omeprazole late last year, due to my hernia causing silent reflux.
I no longer use them as I began to suspect it was making matters worse rather than better, I started to shed more hair, plus my nails were breaking, and that's when I started getting blurry vision.
Honestly, this is like trying to solve a puzzle, but not a fun one!
In UK, my understanding is that people who are symptomatic for B12 deficiency should be treated.
Summary of BSH Cobalamin and Folate guidelines states
"In the presence of discordance between the test result and strong clinical features of deficiency treatment should not be delayed to avoid neurological impairment"
In my words this means if you have the symptoms and your B12 result is normal you should be treated.
One thing I urge UK forum members to do is to track down the local B12 deficiency guidelines used by their ICB (Integrated Care Board) or Health Board. Also worth looking for ICB/Health Board guidelines for Anaemia or Macrocytic Anaemia.
I left some other relevant info on the thread below yours..."Recently diagnosed with pernicious anaemia"
See also pinned post "Various PA/B12D resources".
I'm not medically trained.
I'm just someone who suffered for years from unrecognised and untreated B12 deficiency. Apart from one serum b12 result that was well below range most were between 300 - 500 ng/L and I had over 50 typical symptoms including neuro, spinal and dementia type symptoms.
I'm curious as to what their doctors thought was the reason for their B12 deficiency.
If it wasn't diet related, I would expect GPs to have at least tested for PA (Pernicious Anaemia) and Coeliac disease.
PA and Coeliac disease are both auto-immune conditions that can lead to B12 deficiency and they can run in families.
NICE guideline for Coeliac disease states that people with unexplained B12, folate and iron deficiency should be tested for coeliac and first degree relatives of those with diagnosed coeliac disease.
If you or they have been tested for coeliac in past and got a negative result, check NICE guidelines above to see if recommended diagnostic process was followed....some GPs don't.
ICB (Integrated Care board) or Health Board may have its own guideline on diagnosis of coeliac disease. Compare this to NICE guideline above.
A person with coeliac disease can get a negative result in tTG IgA test (usual test for coeliac) if
1) they have IgA deficiency which means their bodies won't make the antibodies that the tTG IgA test checks for.
IgA is an immunoglobulin.
NICE guidelines recommend that people having a tTG IgA test should also have a Total IgA test. Total IgA test checks if a person has IgA deficiency.
2) they were not eating enough gluten prior to blood being tested.
If tested in past, were you asked to eat plenty of gluten in more than one meal per day for several weeks up to when blood tested for coeliac?
A person with coeliac disease who is eating little or no gluten will be making few or no antibodies to gluten so the tTG IgA test will most likely be negative.
There are studies showing an association between H pylori infection and B12 deficiency.
Search online for "h pylori b12 deficiency uk" for more info.
Any chance of an internal parasite such as fish tapeworm?
One clue that an internal parasite may be present is an increase in eosinophils.
Eosinophils are a type of white blood cell and results for them are found with Full Blood Count (FBC) results.
Have you eaten raw or uncooked fish eg in sushi/smoked salmon etc?
Ever lived or stayed in an area where internal parasites are common?
For more info search for "human parasites B12 deficiency"...some stories may have upsetting details.
"I was put on omeprazole late last year"
There are studies that show an association between PPI drugs such as omeprazole and low b12 levels.
Has your GP also checked what medication you are on?
Some drugs such as metformin, a diabetes drug and some anti-epileptic drugs have been associated with low B12 levels in some studies.There are other drugs/medicines that have been associated with low B12 (and/or low folate levels).
Any concerns about medication should always be discussed with a doctor. Local pharmacist may also be worth talking to.
What are your folate levels like?
Forum members here often report folate, iron and vit D deficiencies as well as B12.
You could put concerns about treatment/diagnosis into a short letter to GP as I think this is harder to ignore. It should ensure the information is filed as letters to GP are supposed to be filed with medical notes. Keep copies. See letter writing link in other reply.
Hi All 3 of my daughters have autoimmune diseases.
My eldest has RA and has had Vasculitis (not sure if that is autoimmune?)
My middle daughter has RA and PCOS.
My youngest has Hashimoto's like myself.
It's rubbish.
They all have below sufficient levels of B12 and are taking tablets.
All of them have been checked for Coeliac (and me) and were negative.
All of us have a problem with gluten.
My two granddaughters are showing signs of the same (possible autoimmune issues) and ended up at their GPs due to extreme fatigue/sore corners of their mouths/tingling etc, they were tested for B12 and their levels were low enough for them to be prescribed B12 tablets.
I have been nagging all of the ones who haven't been tested for Pernicious Anemia to do so!
I think looking back my mother showed signs of low B12 but was unaware.
Her father died from stomach cancer at age 42.
Due to this family history, I had a gastroscopy last December which revealed 'mild gastritis' and a hiatus hernia and peptic ulcer.
One question, since my Hashimoto diagnosis, I have been mindful of my vitamins/nutrients and have been having private blood tests.
As I said before, I have been supplementing with B12 tablets because of my symptoms.
Would a medium to high ACTIVE B12 result rule out a problem with absorption?
I had forgotten I had one of those earlier this year, and at that point I ruled out a problem with my B12.
Children and young adults are mentioned in these books.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US 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".
"Would a medium to high ACTIVE B12 result rule out a problem with absorption?"
I'm not medically trained so not sure.
See right hand side of this flowchart. It says that doctors should think about continuing treatment in those whose symptoms have improved even if second line tests (MMA, homocysteine/Active B12) are normal.
No vegans/vegetarians in the family, so I don't think it is dietary.
I agree with you regarding injections instead of prescribed tablets, but none of them were offered those. We are in Wiltshire.
I work in a Pharmacy and we are seeing more and more people being prescribed B12 instead of being given injections. Probably cost related imo.
My two granddaughters are 23 and 19 respectively, however I will take a look at the information you provided for children, as I do have younger grandkids, and I guess it would be sensible to be aware, considering the family history.
Some ICBs/health Boards have reviewed people on B12 injections in past couple of years. Some ICBs have medicines optimisation teams and are looking to cut costs or as is sometimes said increase efficiency...
I did not know that about calcium. We hear so much about calcium being bad for you that I have been afraid to take it, but do eat dairy. I may try the calcium. Thank you.
On the Calcium : large supplemental doses of Calcium (> 500mg) can be an issue when the background diet already has plenty of Calcium. But if someone has trouble reaching the Calcium RDA, a supplement of up to 500mg should be safe but 300mg or less at a time is easier for the body to handle, physiologically. A glass of dairy milk is about 300mg.
I do take a 250mg Calcium supplement. It is best to get it from diet but a small supplement can be useful if you are frequently below the RDA and from what I've read such low dose supplementation is considered very safe.
I have not been diagnosed with a B12 deficiency. But I remember that about 20 years ago I took my mother to the doctor. They gave her a B12 shot and asked if I wanted one also. I was feeling very down, so said sure. I immediately felt alive again - we went out shopping and had a wonderful day. Placebo? Or was I just so low that it made that much difference? I have taken oral B12 in the last several years, but was told to quit because my serum B12 was high. Have also had shots a few times, but never felt that energy again. Then read that some people have trouble getting B12 into cells - but can be high in serum. So besides calcium, is there any other nutrient necessary for cellular absorption?
Very hard to know if it was placebo or not. If you're getting (and absorbing) sufficient B12 from diet, supplementation might not be necessary but as you get older, stomach acid decreases , making it harder for the body to remove B12 from animal proteins. In such case a low dose daily supplement from 25mcg to 100mcg is worth considering.
If you're not absorbing, then high dose supplements or even injections may be warranted depending on the cause or severity of the deficiency. If PA or an absorption problem is suspected, DO NOT begin taking high dose supplements before testing as they can skew the results and make a correct diagnosis (which is hard at the best of times) difficult to impossible.
When you zoom out on nutrient absorption and metabolism, many, many nutrients become involved. I sometimes feel there is a tendency to try and learn what all these nutrients are and then supplement them. But the best source of these nutrients is a well-planned diet and if absorption issues exist, working with hopefully knowledgeable professionals on correcting those gut issues. In the case of PA though, there is currently no known cure so injections are typically needed for life, although some can get by on high dose oral.
If you are not B12 deficient, I would expect that getting a B12 injection or supplement would not make you feel any different, good or bad.
Here's an interesting recent video on placebo effect:
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