Scared and exhausted

[Thessgirl]

Hi everyone. I have not an an official diagnosis of PA. My gynae ordered some tests as part of my annual check-up (I am 46 and live in Greece). My B12 is 147, folate 3.5 and ferritin 7. Is this why I feel so dreadful all the time? Faint, lethargic, nauseous some days. The gynae is prescribing B12 injections and folic acid but don’t I need to know why this is happening? Do I need to see a gastroenterologist? Any advice gratefully received as I am new to B12 deficiency! Thank you so much...

[clivealive Forum Support]

Hi Thessgirl

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 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?

If you were in the U.K you would be having loading doses of B12 every other day until there is no further improvement and the on maintenance injections. I obviously don't know what the procedure is in Greece.

May I ask whether you have given birth recently?

If you have any more questions please do come back and ask.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well.

[Thessgirl in reply to clivealive]

Thank you for replying, I really appreciate it. No recent births but I was diagnosed with Hashimoto about a year ago and I take thyroxine.

I will see my doctor tonight and find out what she has prescribed. I will mention what you said about loading doses (what does that mean exactly?) every other day and try to get her to prescribe the same.

[clivealive Forum Support in reply to Thessgirl]

The commencement of treatment in the U.K is Vitamin B12 1mg injections on alternate days for two weeks or until there is no further improvement in your neurological symptoms.

The Hashimoto's will have an adverse affect on your B12 levels and I believe there is a "cross over" of some symptoms between that and B12 deficiency.

If your husband has inadvertently put you onto a vegan diet, that too will deplete you B12 level. You need to eat meat, fish, eggs and dairy produce to source B12 naturally via your food. And of course your husband needs to be aware that he too may need B12 supplements in due course.

It was your mention of your gynae that prompted me to ask about a recent birth as, if your were B12 deficient whilst pregnant that could have affected the child's B12 store in the liver.

[Thessgirl in reply to clivealive]

That’s very useful info - thank you. Regarding the gynae - it looks like I am going into early menopause (I’m 46). Could this be related, do you know?

[Thessgirl in reply to clivealive]

Hi again - I’m getting 1mg/day for a week, then once a month for 6 months. Does that sound enough?

[clivealive Forum Support in reply to Thessgirl]

I'm not medically trained so cannot comment on your question about the menopause but the B12 treatment does not look to be that different to that given here and it being once a month after the loading doses suggests you are being given cyanocobamalin, which is what I've been having for more than 45 years for P.A.

[KimberinUS]

Yes, with levels that low, that is definitely why you feel so aweful.

Your ferritin at 7 is also very low so i dont understand why you havent been prescribed iron. Ferritin is the level of stored or reserve iron. You might want to question that after doing some research.

You might consider testung for h pylori, as it is a root cause for b12 and iron deficiencies. The only symptom i had was nausea and feeling full faster than my usual. I never had stomach pain and i was positive for h pylori. H pylori reduces stomach acid and therefore you have a harder time absorbing nutrients from food.

You might have your vitamin D checked, mine was also low when my b12 deficiency was diagnosed. Could be because when feeling poorly, i didnt get outside in the sun.

Best of luck and health.

[Thessgirl in reply to KimberinUS]

Thank you so much for taking the time to reply! Yes, D is also low - was 12 a d is now 20 as I’ve been taking it for a few weeks.

I will ask about iron. Funnily enough my husband went vegan recently and is doing a lot of the cooking - maybe this could be a root cause.

[KimberinUS in reply to Thessgirl]

Veganism could be a reason for iron being low if it has been several months to a year, because if the body is functioning properly, it will absorb more iron when it is available (when you eat meat) and iron is also present in some vegtables like spinach.

However a b12 deficiency takes years.

Additionally, if you are eating lots of vegtables your folate should naturally be higher. Since you are low you might consider an absorbtion issue.

Btw, they tried blaming my issues on being premenopausal. That was b.s. as symptoms got worse until i finally got b12 injections and i still wasnt well therefore i argued to get the h pylori testing just to rule it out...which was positive.

The first doctor that said i could be premenopausal was 16 years ago when i was 31!!!

If you are low in b12, which the thyroid needs, your hormones get unbalanced.

Our body systems are interconnected. They all works together.

[Thessgirl in reply to KimberinUS]

That’s really interesting. I was thinking to ask my gastroenterologist to run some tests to see if I have an absorption issue. Don’t think it’s PA as my red blood cells are not larger than normal.

Had my first injection. Boy they hurt!

[ktwing in reply to Thessgirl]

Thessgirl Hi, just to let you know that not having larger blood cells doesn't rule out PA - for one thing, iron deficiency causes smaller blood cells, so that can (kind of) cancel out the larger blood cells from PA. It's also the case that research has shown that between 25 and 33% of those patients with either cobalamin deficiency or pernicious anaemia do not have macrocytosis (from Martyn Hooper's book, 'What You Need to Know About Pernicious Anaemia & B12 Deficiency'). It's a big and complicated world, the B12 one, but you'll get good advice here There are also good websites, including the Pernicious Anaemia Society: pernicious-anaemia-society....

[Carole81]

Me to I am new to this as well ,started vit b 12 injections at Christmas , still feel exhausted but not quite as bad as I did ,I think it takes a while to start feeling a bit more normal x

[Sleepybunny]

Hi,

Some B12 links that may be useful. Some info may be specific to UK.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

"I have not an an official diagnosis of PA"

Has your doctor ordered an Intrinsic Factor Antibody test?

This test can help to diagnose PA but test is not always reliable and it is still possible to have PA even if IFA test result is negative or normal range but not all doctors are aware of Antibody Negative PA.

Testing IFA soon after a B12 injection can lead to unreliable results. Doctors generally leave at least 2 days and up to 2 weeks after a B12 injection before testing IFA>

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around the world.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

Have you had tests for Coeliac disease?

Coeliac disease can lead to b12 deficiency because it can affect the gut.

coeliac.org.uk/coeliac-dise...

Tests for H Pylori infection?

H Pylori infection may lead to B12 deficiency as it may cause inflammation of the stomach.

Fish tapeworm and other parasites

Have you ever eaten raw or undercooked fish?

Fish tapeworm can lead to severe b12 deficiency.

b12deficiency.info/blog/tag...

en.wikipedia.org/wiki/Diphy...

I think one potential sign of fish tapeworm infection is a higher than normal level of eosinophils, one of the types of white blood cells that are counted in a Full Blood Count (also known as Complete Blood Count).

B12 Deficiency Info website

b12deficiency.info/

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

"I’m getting 1mg/day for a week, then once a month for 6 months"

That sounds better than usual treatment in UK which is 6 loading jabs over 2 weeks then a jab every 3 months.

PA requires lifelong treatment. What is going to happen after the 6 months of once a month?

There are other causes of B12 deficiency that require lifelong treatment as well.

At least in Greece, it is possible to buy injectable B12 over the counter. There are other forum members who live in Greece. If you put Greece in title of threads you start, it might get their attention.

B12 guidelines

Might be worth trying to track down any national or regional guidelines on B12 deficiency and PA in Greece.

The following are UK articles and guidelines but may be of interest to you and your doctor.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Health professionals can join PAS as associate members for free, I think this applies to non-UK health professionals as well as those in UK.

pernicious-anaemia-society....

Misconceptions about B12 Deficiency (English language article from Dutch b12 website).

stichtingb12tekort.nl/weten...

Iron Deficiency

patient.info/doctor/non-ana...

patient.info/doctor/iron-de...

Have you had a set of iron tests? see next link.

labtestsonline.org.uk/tests...

I'm surprised low iron level is not being treated. Has your doctor explained why?

I am not medically trained.

[Ryaan]

Most definite tests you need are B12, Folate, Ferritin and Vitamin D. Yes any one of these low or deficient you can feel like you said so make sure these are at good levels. Getting a Thyroid function test is also good incase you have overactive or under active Thyroid.

I think if you ask your doc for a blood test this is standard and will include all the above.. ...if not ask for them to be on the blood test.

Hope you feel better soon.

[Thessgirl in reply to Ryaan]

Thank you! All those are low so it’s hard to say which one is making me feel terrible! I have Hashimoto’s so an under active thyroid. All this is making me gain weight which is the worst of it all actually as I had worked really hard to lose it and now I’m back where I started...

[Ryaan in reply to Thessgirl]

All of them are important and need to be at normal/good level otherwise you will feel very unwell. You need a prescription from your doctor.

Sorry to hear about your Thyroid, I think it’s best to post on the Thyroid forum which will be of help.

[eleos]

Hey Thessgirl. I am also from Greece(athens). Don't go to gastroenterologist yet. I had the same symptoms as you have, plus eye problems. I could not digest anything and the stupid doctor did colonoscopy and gastroscopy and he found nothing. I wonder, they study for 10 years and still they know nothing about b12 defficiency or megaloblastic anemia.

I don't know how many injections your doctor prescribed you. I have had enough with useless doctors. Just did my first injection today and i will do every day for 10 days and then one every month. 1mg/2ml Articlox from unipharma

P.S i also have elevated tsh and one family member has been diagnosed with Hashimoto but she still feels like crap with no energy after many years of treatment. If i feel better i will force her to start b12 injections. I start to believe that b12 defficiency causes thyroid problems.