B-12

[Yole]

Hello everyone, I have had a B12 deficiency for years I am very confused I take B-12 injections every other week, I have brain fog, I can not remember things I am 30 lbs overweight (I have never had a weight problem) now I can not lose it I have no energy I was told that I am borderline diabetic., my PD tells me nothing what questions should I ask I really feel bad and now I get the shakes and feel bloated and nauseous all the time can someone help me please

[Singoutloud]

Have you had your thyroid checked. TSH, Ft4 & ft3. Even if blood results are within 'normal' range your thyroid could be still be struggling to work properly. Brain fog and unexplained weight gain are classic symptoms of an under active thyroid.

First of all, get copies of your blood test results (yes, you are entitled to them and they cannot refuse to give them to you)

Then head over to the thyroid UK community on the this site. You can post your results in a question and there are lots of knowledgeable people who can give you advice. You may want to check out the thyroid UK website as well for a full guide to thyroid problems.

[Marz]

Whilst reading your post I too thought Thyroid - like singoutloud ! When you have the Thyroid checked also add the anti-bodies - Anti-TPO and Anti-Tg. As you have LOW B12 - also test the Ferritin - Folate - Iron and VitD. It's possible they are all low and need treating for you to feel well.

When you have the results post in a new post with the ranges either here or on Thyroid UK forum - and people will comment.

Sadly Docs have great difficulties with diagnosing and treating both the Thyroid and B12 deficiencies. What treatment are you having for your low B12 ??

[Yole in reply to Marz]

Only 50,000 units of injections I am vit-D deficient I just can't afford to pay $30.00 a month my insurance will not pay for it. They have checked my thyroid but I agree I do believe that could be it too.

[Marz in reply to Yole]

If your TSH is over 2.5 then your thyroid is struggling. The FT4 and The FT3 need to be in the upper quadrant of the range. VitD is inexpensive to treat yourself - just ensure your calcium levels are not high as VitD improves the absorption of calcium. So take VitK2 to ensure the calcium goes to the right places - bones and teeth !

Hope you soon feel stronger...

[Yole in reply to Marz]

Thank you

[Sleepybunny]

I'm guessing that you are in USA or Canada.

Do you know why you are B12 deficient?

Have you ever had an IFA (Intrinsic Factor Antibody)test? The IFA test can help to diagnose PA (Pernicious Anaemia) but it is not always reliable. It is possible to have PA even if IFA test is negative.

Have you read "Could It Be B12" by Sally Pacholok and JJ. Stuart? It's a very comprehensive book about B12 deficiency.

Also a recent book by Martyn Hooper, the chair of the PAS (Pernicious Anaemia Society)

"What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. He has written other books about PA.

Useful websites

pernicious-anaemia-society....

01656 769 717

b12deficiency.info/

b12awareness.org/

Have you searched online for National/regional Guidelines on the treatment of B12 deficiency?

Have you ever had a test for Coeliac (spelled Celiac in USA) disease?

[Yole in reply to Sleepybunny]

Thank yes I live in the US I do not believe that I have had that test done, but I will look into the resource books you mentioned

[Coastwalker]

Yole,

Like Singoutloud and Marz, my first thoughts were 'Thyroid' too, you can have both. B12 Deficiency and Hypothyroidism (also called Low thyroid and Low FT4/3) together.

Brain fog comes with both, but your weight gain, no energy and borderline diabetes all point towards Low Thyroid.

I always ask for a printout of all my bloods done and pop them up on Thyroid Uk for other members to help you see if you have a thyroid problem or to help get optimum medication.

Unfortunately Doctors have 'missed' Low thyroid in the bloods of several members of my Family, so we have had to get them well ourselves.

[Yole in reply to Coastwalker]

Thank you I will ask for the test

[waveylines]

I also wondered about the thyroid too as above. However have you also been checked for Celiacs? B12 and Celiacs often go together as does hypothyroidism. I am assuming you have not yet tried a gluten free diet? Before you do ask your doctor to check you for Celiacs. Weight gain, bloatedness, nausea, fatigue, brain fog are all linked. If you don't test positive for Celiacs it could be that you are still gluten sensitive and going on a gluten free digest could still be beneficial.

A friend of mine wasn't formerly diagnosed with Celiacs but is gluten sensitive. Since going on a gluten free diet she has lost all those symptoms you describe and her weight has returned to normal.

[Yole in reply to waveylines]

wow no I haven't but I do know when I eat anything gluten even pasta I feel sick thank you

[freelancer]

I'd also investigate whether you have coeliac disease or any food intolerances in the mix. Your post rang a bell with me - I was diagnosed with PA (Schilling test) but continued to have extreme fatigue and brain fog. I gained a lot of weight and was finding it increasingly difficult to work. After a year or so I went on a low-carb diet to lose weight and suddenly discovered that when I cut back on wheat most of it went away, so I eventually went totally gluten free. If I eat wheat now I get sudden fatigue and nausea for days on end.

I'm now five years on, mostly feel fine, am about three stone lighter without any effort to be and sometimes forget I need my three-monthly B12 injection, which would have been impossible in the days when I used to count the days to it.

If you suspect you may be coeliac it's important not to go permanently gluten free before you have been properly tested - I didn't and have always regretted it.

[pvanderaa]

In addition to the above replies, I recommend you start a logbook of all your food and drink along with your medications. Also log your symptoms. You may find a delay of 3 to 48 hours between eating something and the symptom appearing. The delay occurs because the gut is involved.

The severe end of a B12D is neurological damage so look for all symptoms. Brain fog is one neurological symptom.

Once you start on B12, some symptoms may show up due to your body detoxifying. You will also need to support B12 with folic acid and a daily multivitamin.

Use the log to support any short term memory loss and to look back to identify a cause of a symptom.

Eliminate a suspected food for at least 2 weeks and then reintroduce to confirm symptom returns.

Use the log to have further discussions with your doctor.

[wedgewood]

Hello Yole. I have P.A.,which means also having low or no stomach acid which results in bloating and nausea,because food ferments instead of digesting. I solved the problem by taking a water-based probiotic,and eating raw sauerkraut. I try to avoid wheat,and eat rye sauerdough bread. This has helped me enormously. Maybe it would help you too? My very best wishes to you.

[Jose651 in reply to wedgewood]

Hi wedgewood,

Can I ask what water-based probiotic you are taking? Also what sauerkraut do you eat.

👍

[wedgewood]

Hello Jose651

I use a water- based probiotic called SYMPROVE. I woudn't have believed that anything could work so well. It was really astonishing. It is unforunately expensive . You can get a special offer direct from the producer. It was tested and trialed at Kings' College and was developed by a gastroenterologist. . buying a single 500ml bottle costs around £19. and at first you need to take 60 ml every morning. After about 3 months I cut it down to about 30 ml per day. I don't dare stop,as I couldn't bear to go back to how I was before.

I also eat RAW ORGANIC SAUERKRAUT.purchased at a health food store(not the usual stuff which is pasteurised.)Not a huge amount just a tablespoon or so a day. I intend to make my own eventually. It is apparently quite easy,and cheap. MUST be ORGANIC though. There are very good probiotics in Sauerkraut (raw, organic.) NEVER cook it --destroys the precious bacteria.

I had been to see a gastroenterologist, who eventually told me that anyoone with P.A. should assume that they have LOW or NO stomach acid( Hypochlorhydria or Achlorhydria.) My G.P, told me that there is no treatment for it. (no patentable medicine to prescribe) But its important . You cant absorb nutrients without it. Some people use Hydrochloric acid with pepsin . I have some but I"ve never used them.

I am very fond of anything acidic since I had the problem ..But anyhow no more burping tummy ache or nausea. You will find lots of other suggestion if you google stomach acid. Look- the best of luck with all your endeavours to feel 100% well again.

[fbirder in reply to wedgewood]

I went to see my gastro today. The first time I mentioned Betaine HCL he pooh-poohed the idea. But this time he was more interested and said that he would do some investigatiions.

[wedgewood in reply to fbirder]

I am realy interested and pleased to hear that! I have some of those capsules, but have never dared to use them .When I mentioned them to my G.P.she said she had never neard anthing so ridiculous or dangerous! I would be keen to know what your gastroenterologist finds out. Well it just makes sense doesn't it? Our natural stomach acid is very strong Hydrochloric acid, so what could be wrong with taking them? Well, they are not patentable, so not connected to the powerful pharmaceutical industry,So there is no research done. Except you have, and found them to be really helpful I might well try some. I am always drinking organic cider vinegar,and grapefruit juice., because I feel I need them. I will give the Betaine HCL a whirl. Its really useful to know that you have had success with them.

[Yole in reply to wedgewood]

let me know I really don't like to take meds, only natural