Being tested for coeliac but B12 low, and ferratin and now have headaches. Just started Metformin. Is there a link?

Hi new on here.

I have several autoimmune disorders. I added B12 to regular full blood test, on Azathioprine and it came back 246. Rheumy said it was ok but I read I need to be nearer 300. Previous blood test showed unusual red blood cells and low haemaglobin. Also low ferratin.

Recently have coeliac symptoms, having antibody blood test and waiting for ct scan to diagnose.

Been taking oral B12 but as I have anaemia, now headaches, worried it may be B12 and coeliacs through non absorbtion. Headaches started this week, constant top of head. Really getting me down. Just read Metformin lowers B12 and started this three weeks ago. Does this ring any bells please? Can I have all of this at the same time? Has my taking supplement been a waste of time, if coeliacs proven?

Juggling so much, confused, memory failing, usual fatigue plus fibro, Lupus, AIHep, SS, menieres, possible coeliac, possible PA?

Any insight gratefully received. Anyone untangle this?

Regards

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  • You have lots going on. I am celiac. Controlled. My doc says that B12 should be in the 1000s and mine now is. It cannot hurt you to have high B12. I am struggling with tons of headaches on top of my head/behind my eyes. Doctors think it is high estrogen causing this. My estrogen went from 200s to over 1000..based on the same day in my cycle. After takING bio identical hormones. So they are actively working on lowering it. I'm not sure if you blood tested your hormones..But that's the reason for my headaches since may. I struggle with anemia forever due to early celiac damage that cannot heal. But iron iv helps me dramatically. When my iron is up I have much less memory issues and much more energy. Have you heard of aip? Auto immune Paleo. I also find it dramatically helps my health/pain level/ energy level. Wishing you healing success!

  • Thanks so much daisylain. I am way past menopause so dont know that will apply to me. Thanks for the heads up re level in 1000s, I shall chase that up.How quick are docs to give iv iron and B12 injections? Are they freely available from the GP? i was so desperate three weeks ago begged for a short course of steroids which lifted me somewhat but I am sliding down the slope again into exhaustion and simply sitting and breathing. May have to ask more confidently. This could only help yeah? Not affect coeliacs badly?

    Not heard of Paleo diet but will read up.

    Thanks so much for your time and kind reply

    ⚽️

  • Hi, I'm also on metformin and just found out I have Microscopic colitis. I've always suffered from migraine which stopped when I went through the menopause at 36. I found out I was b12 deficient (level 119 last October) Still felt very ill even with levels of over 1,000 until I added in 5mg of folic acid daily. I feel 'normal' and able to function for the first time in years. Metformin doesn't cause headaches for me but I have high blood pressure and when that is playing up, I get headaches. I was blaming everything on b12 when I unknowingly had other things going on.

  • Thanks karenn. That helps. I will quiz GP on all blood components and how to correct them. Thanks for your reply

    ⚽️

  • Wish you well footygirl and hope you feel much better soon :)

  • Are you in UK?

    "Previous blood test showed unusual red blood cells and low haemaglobin. Also low ferratin." have you had folate tested as well as B12. ferritin and FBC (Full Blood Count)?

    Were you told your red blood cells were macrocytic? Macrocytosis(enlarged red blood cells )can sometimes be found in people who have low B12 or low folate, there are other causes of macrocytosis.

    patient.info/doctor/macrocy...

    patient.info/doctor/pernici...

    patient.info/doctor/folate-...

    labtestsonline.org.uk/under...

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

    Sadly having one autoimmune disorder means others are more likely so I hope you are being tested for PA (pernicious anaemia).

    Have you looked at b12 deficiency symptoms lists?

    pernicious-anaemia-society.... Click on link to Symptoms Checklist.

    b12deficiency.info/signs-an...

    UK B12 documents make it clear that people who are symptomatic for B12 deficiency should be treated even if B12 blod levels are normal range. See following documents.

    1) BCSH Cobalamin and Folate Guidelines. I found page 8, a diagnsois flowchart for B12 deficiency useful and page 8 which gives details of UK b12 treatment.

    2)http://www.bmj.com/content/349/bmj.g5226 BMJ article on B12 deficiency, see summary points.

    B12 books

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

    "Could It Be B12" by Sally Pacholok and JJ.Stuart

    You mentions several autoimmune problems, I wondered if you had been tested for immunoglobulin deficiencies?

    piduk.org/

    patient.info/doctor/primary...

    Other links

    martynhooper.com/

    b12d.org

    If you have lupus type symptoms I wondered if you had ever been tested for Hughes syndrome?

    hughes-syndrome.org/about-h...

    nhs.uk/conditions/Hughes-sy...

    londonlupuscentre.co.uk/hug...

    Coeliac tests can sometimes be negative in person who has Coelaic disease . see links.

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

    There are many possible causes of B12 deficiency....

    b12deficiency.info/what-are...

    b12deficiency.info/what-to-...

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

  • Wow. What a lot to read. I shall get right to it. Thanks so much. I think I see clearer now.

    I will get back to you

    Grateful

    ⚽️

  • I cannot believe list of symptoms. I have most of them, a lot attributed to other conditions like cant stand up in dark and Menieres but the weirdest...

    I have been craving cold decaf coffee, stuffed with ice! Ice! How weird is that? Will have to go through the list and re think what is causing what with my Doc.

    Thanks for that list,

  • Hi Footygirl,

    I think a craving for ice is indicative of low iron. At least that's what it says in all the literature online. And since you are low in iron, that makes sense.

    Best of luck getting everything straightened out! :-)

  • Think the term for strange cravings is "pica". Pica is mentioned on PAS symptoms page under "less common mental symptoms"

    pernicious-anaemia-society....

  • Autoimmune conditions seem to enjoy coming along in groups. It sounds as though you could have a collection of them. If you do have celiac then it can cause low B12 due to poor absorption. The low B12 can be responsible for poor memory, extreme fatigue, loss of balance ( menieres?) , amongst other things. Further blood testing is certainly needed, but as you have taken a supplement it will have an effect on future results.

    Ask your doctor to test for VitD levels, MMA and homocysteine, also to have a look at your thyroid function.

    Metformin will lower B12, I imagine you are taking it for diabetes?

    Have a look at The Pernicious Anaemia Society website for more information and a full symptom list for low B12. You can tick all that apply to you and take it to your GP on your next visit.

    Best wishes

    MariLiz

  • Good advice from Marliz.

    Many researchers believe leaky gut/intestinal disease the source of autoimmune disease and I believe this is at the bottom of all our own family autoimmune/Hashimoto's thyroid/B12 problems.

    Personally I've found that taking daily spoonfuls of sauerkraut (more good bacteria than any probiotic), and avoiding gluten, is hopefully healing the villi in my stomach wall and helping absorption of B12 and other essential nutrients - thereby strengthening the immune system. You may find Dr Marc Ryan's (on his Facebook page) excellent article interesting :

    "Hashimoto's Health Tip: The Little Paint Brushes in Your Tummy"

    "Anyone who has lived with Hashimoto's knows that this is so much more than a thyroid problem. The biggest axis of trouble is often found in the thyroid-brain-gut connection. And one common problem that causes this is leaky gut or intestinal permeability.

    Many researchers believe that this is ground zero for autoimmune disease.

    It is the place that autoimmune disease is born and the place that makes it get worse and worse. And when things get worse in the gut, problems in the thyroid and brain often follow. In this post, I wanted to shed light on some little known but very helpful enzymes called brush border enzymes.

    The small intestines are the place where leaky gut often happens. And the walls of the small intestines are lined with tiny little hair like protrusions called microvilli. On a regular microscope they kind of look like a tiny, fuzzy paint brush. This fuzzy appearance is why they came up with the term "brush border" to describe them.

    This is the place where absorption happens.

    And many people with Hashimoto's suffer from deficiencies of important vitamins and nutrients (like vitamin D, vitamin B12 and B6, zinc, selenium, magnesium, iron, etc.)

    One of the reasons for this is the breakdown of these brush borders.

    Foods high in lectins or other inflammatory substances (like gluten, and other grains, beans and nightshades) can actually cause these brush borders to get crushed and destroyed.

    The microvilli (little hairs) that make up the brush border have enzymes for this final part of digestion anchored into their membrane as membrane proteins. These enzymes are found near to the transporters that will then allow absorption of digested nutrients."

    ........

    Re. Sauerkraut :

    nourishingplot.com/2014/06/...

    "In The Gluten Summit, 2013, Dr. Natasha Campbell-McBride, MD, told Dr. Tom O’Bryan, ““With every mouthful of sauerkraut you’re consuming billions of beneficial microbes which will be killing the pathogens in your gut driving them out and replenishing the beneficial flora in your digestive tract.”

    Cabbage is high in anti-inflammatory properties, vitamins A and C. Cabbage also reduces lipids in the bloodstream. When cabbage is fermented into sauerkraut the fermentation process opens up the cell walls accessing a higher ratio of vitamins. "

  • Mariliz,

    Spot on with those persistent tinnitis balance problems with PA. must review them all

    Cheers

    ⚽️

  • Hi Footygirl are you supplementing with Folic Acid as well as the B12 as Folate is essential to process it?

  • No but will quiz GP. Thanks

  • 3 weeks of metformin is unlikely to have been cause of any B12 deficiency. It tends to take years for a deficiency to happen because the body is very efficient at storing and recycling B12 - but the symptoms then tend to snowball as an underlying absorption problem really starts to bite and means that all of your reserves of B12 have been used up.

    B12 deficiency gets more likely as you get older because stomach acidity tends to drop as you get older, and your ability to absorb nutrients from your diet in general - which would include iron - is generally impaired.

    An iron based anaemia could be causing the headaches as well.

  • Thank you Gambit62. I hear you re Metformin but wondered why Gastro told me not to take them fortyeight hours before ct scan. I am 68 in a few days time. The iron anaemia could be causing headache, got it.

    Thanks a lot. I will join PA forum to learn more

    Cheers

    ⚽️

  • think you would have to ask the gastro or possibily a pharmacist why the didn't want you to take metformin before the ct scan - possible that it may do something that could skew the results.

  • Ta

    ⚽️

  • Hi again,

    Some people find it helpful to join the PAS , the PAS can sometimes intervene on behalf of members. They are helpful and sympathetic to talk to and can probably suggest other useful info to look at.

    pernicious-anaemia-society....

    PAS tel no 01656 769 717

    Examples of how PAS can help.

    martynhooper.com/2016/04/24...

    Have you ever had an IFA (intrinsic factor antibody) test? This can help to diagnose PA but the IFA test is not always reliable and it is possible to get a negative result but still have PA...some medics may not be aware that it is possible to have Antibody Negative PA. Antibody Negative PA is mentioned on page 29 of teh BCSH Cobalamin and Folate Guidelines.

    fbirder has compiled a useful summary of mainly UK B12 documents. There are quotes that can help to refute some of the misunderstandings that some medics have about B12 deficiency.

    If you click on the link to fbirder's profile page, there is a link to summary. there is another link to summary in one of the pinned posts on this forum. I now take a copy of this summary to appts because I've had diffiuclt experiences with medics on the subject of b12 deficiency.

    "Previous blood test showed unusual red blood cells and low haemaglobin. Also low ferratin."

    I included a link about macrocytosis in previous post but also thought I'd mention that I've read that B12 deficiency can lead to hypersegmenetd neutrophils.

    Neutrophils are measured in FBC (Full Blood Count) but don't think FBC will show if neurtrophils are hypersegmented. I think a "blood smear" also known as "blood film" might show this. Not sure how often blood smears are carried out on NHS for suspected b12 deficiency but it is possible to get a blood smear/film privately. Blood film can also help in identifying macrocytosis and microcytosis.

    labtestsonline.org.uk/under...

    patient.info/doctor/periphe...

    Low B12 and also low folate can sometimes lead to macrocytosis (enlarged red blood cells). Low iron can sometimes lead to microcytosis (small red blood cells). A person who has low B12/low folate and also low iron may show both macrocytic and microcytic cells in a blood smear. On the FBC (Full Blood Count), high MCV and high MCH can indicate the possibility of macrocytosis but macrocytosis can be masked if the person also has low iron.

  • Thanks yet again for your time and mine of info Sleepbunny. I shall re read this and explore all avenues before I see GP next week after her hols. Must get list of normal values in blood tests so I can see if things high or low. I get sent results of full blood test every four weeks but it is standard and doesnt show hypersegnented neutrophils. Detailed one in May showed large red blood cells though.

    My lazy, former GP, simple handed me iron pills which I have not taken as specialist wanted anaemia with low ferritin investigated. He didnt. Hoping to get new G to do so.

    Thanks again

    ⚽️

  • Having read many of your posts and struggles - I am wondering if you have been tested for Hashimotos ?

  • Hashimotos no. Full Thryoid ye and all ok thankfully

    Thanks

    ⚽️

  • It could be worth asking for the Thyroid anti-bodies to be tested - Anti-TPO AND Anti-Tg. Auto-immune Thyroid illness can cause many complications. Also did you have the TSH - FT4 and the FT3 tested ? It would be interesting to see your results with ranges. Always good to eliminate things like thyroid - as one that is not performing optimally can be the root cause of so much illness. Your Thyroid may be producing T4 - but is it converting into the ACTIVE thyroid hormone T3. This is needed in everyone of the trillions and trillions of cells in the body - so when the result is low then there is not enough T3 to go around and things begin to go wrong.

    Not sure what you mean by OK. Docs often say this when they mean the results are in range - however it is where they are in the range that is key. Maybe ask for copies of your last thyroid results when next you are at the GP surgery.

    Hope all goes well .....

  • The blood serum tests used to diagnose Vitamin B12 deficiency are not specific to Vitamin B12 and they are not accurate and sensitive enough. Serum homocystein and methylmalonic acid levels are considered more reliable indicators of vitamin B12 deficiency than measuring the concentration of vitamin B12 in blood. Adequate folate mask the symptoms of B12 deficiency but active folate is needed as well.

    Low levels of vitamin B12 can manifest for example as; chronic fatigue, loss of reflexes, personality changes, apathy, clinical depression, mania, psychosis, irritability, anxiety, tremors, seizures, symptoms of dementia, many digestive problems, tingling and numbness of extremities, pins and needles, feeling of falling asleep on limbs, memory loss, shortness of breath, chest pain, sore tongue, sweating from the top of the head, pallor, loss of sense of touch, anemia, etc.

    B12 is essential for neurological function, formation of red blood cells, enzymes synthesis and DNA/RNA formation. Sublingual B12 lozenges absorb through mucous membranes bypassing the digestive system. Metformin, antacids, contraceptives and many other drugs block the absorption of B12.

    I suffered many years before I got a proper diagnosis.

    Get Well :)

  • Thanks. I am awaiting my first apt with new GP to ask for PA investigations. I was supplementing stopped three months ago methylcabolomin, was on Lansaprazole but stopped a month ago, being murdered by acid now and taking antacids, now you say I should not take Metformin? Oh heck. Hope this GP is up to snuff for this. Wont take anything more until see her.

    Will ask for IFA test serum homocystein and methylmalonic too. My mental acuity is dimminishing and is worrying me more than numb feet and pins n needles at the present. Oh, no, diabetes reviews take no notice of numb sides of feet only tippy toes which are not numb!

    Thanks

    ⚽️

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