Could it be b12?

[Nanny23]

Hi I have been having health problems last few years. I'm hypothyroid and have terrible digestive issues. I've learned through health unlocked thyroid that vitamin b is hard for thyroid patients to absorb. I was tested but was supplementing when tested so was told not an accurate test. I also was diagnosed with neuropathy in my legs. Had nerve testing confirmed. Pain in legs and pins needles pain in feet. Since I am supplementing b12 how could I be tested to find out if this is my problem? Health unlocked has been a lifesaver for me. Thanks in advance

[clivealive Forum Support]

Hi Nanny23 welcome to this community.

I am not a medically qualified person but there are others on here who will be able to give you good advice.

You are correct saying "I was tested but was supplementing when tested so was told not an accurate test." but do you know what the level was and the range between used? Also do you know what your folate (B9) level was?

The symptoms you list suggest there could be a B12 deficiency and on page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. 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 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.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

In addition to your thyroid problems do you "see yourself" in any of the above?

I wish you well.

[Nanny23 in reply to clivealive]

Thanks so much for your reply. Just bought the book you mentioned.

[deniseinmilden]

I can understand your desire for tests so see what you can do but the best treatment is based on symptoms and as B12 is safe, if you don't get any where, it might be worth experimenting with a treatment regime at a higher level (ideally injections) to see if it works.

Good luck!

[Nanny23 in reply to deniseinmilden]

Thanks so much for your reply. Just purchased from Thorne a good b12 and folate combination recommended by Suzy Cohen an advocate for b12 deficiency sufferers.

[Sleepybunny]

Hi,

I'd also recommend the book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the Pernicious Anaemia Society which has members from around the world.

pernicious-anaemia-society.... 769 717

Lifetime membership costs £20. PAS phoneline is not working at moment but should be fixed soon. E-mail contact on this page pernicious-anaemia-society....

Are you In UK?

Other UK B12 websites

b12deficiency.info/

b12d.org

martynhooper.com/

Recent UK documents make it clear that people who are symptomatic for B12 deficiency should be treated even if B12 blood levels are normal range. Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage.

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH Cobalamin and Folate Guidelines"

What symptoms do you have?

b12deficiency.info/signs-an...

pernicious-anaemia-society.... See Symptoms Checklist.

UK recommended treatment

treatment for B12 deficiency where there are neuro symptoms includes extended loading doses and maintenance injections at shorter intervals. See following for details of UK treatment.

1) BNF (British national formulary) Chapter 9 section 1.2

2) See Management section in following link. patient.info/doctor/pernici...

3) Page 8 in BCSH Cobalamin and Folate Guidelines. I also found page 29 useful.

I am not a medic just a person who has struggled to get a diagnosis.

[Nanny23 in reply to Sleepybunny]

Thanks so much for all the info. I live in New York USA. but I find health unlocked UK forums to have invaluable information on them. My symptoms are neuropathy in legs. Thyroid hypo stomach issues. Terrible indigestion. On thyroid UK I learned hypos have trouble absorbing b12. I was tested but was supplementing when tested so results skewed. Thanks again for all the info. It's incredible how much a lack of one vitamin can affect people.

[Sleepybunny in reply to Nanny23]

A USA B12 website

b12awareness.org/

The website was set up by Sally Pacholok, the author (with her husband) of the books ......

"Could it be B12?: An Epidemic of Misdiagnoses"

and

"What's Wrong with My Child?: From Neurological and Developmental Disabilities to Autism...How to Protect Your Child from B12 Deficiency"

There is a film "Sally Pacholok" of Sally's life which sadly does not seem to be available in the UK. I found the "Could It Be b12" book very comprehensive with lots of case histories.

[Natura in reply to Sleepybunny]

Sleepybunny...i am reading this book now and shocked. My husband and i are going to get tested next week. He is showing early signs of Parkinson. His grandfather had Alzheimers. We both are having memory problems. I have Thyroid, low end lupus, fibro. I have been looking quite anemic. And we are only in our early 50s. Chronic fatigue since i was a child. Hubby has too.

I am going to bring my girls to dr today to argue that i want their b12 tested and the MMA test. My daughter has shown up on autism spectrum when she seemed ok as a little girl. She has pins and needles This is a 2nd visit. Dr is not listening to me. And I might have to start yelling. Both my girls are pale as ghosts. Napping for hrs on the couch. And the dr likes to call it normal for growing teenagers. Omg! I want to scream. No one is listening.

( i live in NY)

What can I say to these drs today and next week? How can I convince them?

[Sleepybunny in reply to Natura]

Hi reading the book "Could it Be B12" was a wake up call for me. Everything fell into place after years of ill health.

My Intrinsic Factor Antibody (IFA) test was negative and I did not know at the time that it is possible to have Antibody Negative Pernicious Anaemia. It's possible that some USA doctors do not know that Antibody Negative PA is a possibility.

See flowchart from BSH Cobalamin and Folate Guidelines (UK document) below which mentions Antibody Negative PA.

stichtingb12tekort.nl/weten...

I don't know if there is an equivalent set of guidelines in USA or within your state.

There are many other causes of b12 deficiency besides PA. I suspect there is some kind of genetic factor at work in my case.

Causes Of b12 deficiency

b12deficiency.info/what-are...

The PAS (Pernicious Anaemia Society) are based in UK but have members from all around the world, of all ages from toddlers to 80 plus years. Perhaps it would be worth talking to them about your family.

pernicious-anaemia-society.org

PAS tel no [phone] answerphone so messages can be left.

There are 2 PAS local groups in USA. If you become a member you can access details of PAS local groups.

pernicious-anaemia-society....

Who gets PA?

Do you have any blood relatives who had PA or B12 deficiency?

pernicious-anaemia-society....

B12 deficiency tests

Has anyone in your family had an active B12 test or a homocysteine test as well as MMA? Have you had complete blood counts (CBC) known as full blood count(FBC) in UK?

b12deficiency.info/b12-test...

labtestsonline.org/understa...

active-b12.com/

I'm so sorry to hear you are concerned about your children. I am not a medic. I think it is wise to be well informed about b12 deficiency because my experience in UK has been that some doctors are not.

Post as new thread?

Might be worth you posting a new thread as posts on older threads get missed sometimes and a new thread might get the attention of some of the USA forum members.

Is there anything helpful on the B12 Awareness website?

b12awareness.org/

There's a Contact tab on website.

[Natura in reply to Sleepybunny]

Thank you so much for those links. I got 30 pts doing that symptoms of b12 deficiciency test in the the book. High risk was 7 or greater. I will take a look at those links.

[Natura in reply to Sleepybunny]

My mom died very young from ulcerative colitis and sepsis, liver failure. My cousin has sjorgens. My sister Hashimotos. I tested positive for low end lupus. I am seeing a liver dr tomorrow and have digestive and lung problems. I am a mess.

And starting to get really worried.

[Nanny23 in reply to Natura]

Where in New York do you live? I'm from Long Island New York. I know the feeling trying to get a doctor to listen about vitamin deficiency. I hope you can find someone to listen to you. Stay well.

[Natura in reply to Nanny23]

I am from LI too. Funny. The drs make statements that the RBC looks good, so you are not anemic. Dos anyone consider that its not always present?. I get really pale sometimes, and its usually not when i am getting the tests done of course.

[Nanny23 in reply to Natura]

Of course. Where on Long Island you from. I live in BABYLON Suffolk county. Stay well.