Pernicious Anemia

Does anyone here have pernicious anemia?  I have Hashimotos, celiac and vitaligo and run low on iron and b12.  I just read about this and was looking at my lab reports and b12, ferritin and hemoglobin all seem to coincide, meaning that if one is low they are all low.  

Here are my current numbers although not considered low I feel like crap and have a number of symptoms.

b12  360 

Ferritin 41

Sodium 142

Hemo 12.3

wbc 6.7 

Just curious about this condition.

28 Replies

oldestnewest
  • walker, 

    There are many members in TUK with PA  and also a whole community on HU

    healthunlocked.com/pasoc

    Even without ranges one could assume you are low in iron and B12. Have you had folate tested ? Ask your GP to test homocysteine and MMA, and intrinsic factor antibodies & parietal cell antibodies to eliminate PA. 

    Are you supplementing the deficiencies as these nutrients are required for good thyroid hormone synthesis ? ? .

    …………………………………………………………………………………………………………………….....................

    Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

    …………………………………………………………………………………………………………………….......................

  • I think you might like to watch this video.  Not all people who are seriously deficient in B12 have anemia.  Indeed their high levels of folate may be masking their deficiency.  Such was my case.  My B12 got as low as 85 with no symptoms of anemia!  However, I had the neurological symptoms.

    The youtube video:  Diagnos and Treating Vitamin B12 Deficiency

  • The youtube video is: Diagnosing and Treating Vitamin B12 Deficiency

  • They are all auto-immune issues.  So do you have gut issues as well ?  Healing the gut is the first big step to wellness when we have auto-immune illnesses.  I have Hashimotos and Crohns - so have learned a thing or two over the years !

    What treatment are you receiving ?

  • Hi Marz

    I was interested to read your comment. I have dreadful gut issues & I'm currently being investigated for Crohns. I believe I have Hashimotos & was diagnosed with an overactive thyroid 2 years ago. How do you treat your gut issues?

    Many thanks

    Lisa

  • If you were overactive - isn't that Graves rather than Hashimotos ?  If you were Hyper - then it is possible your gut was overstimulated with thyroid hormone.

    I was diagnosed with Crohns at 27 - now hurtling towards 70.  I am gluten free - but only for the last 3 years - and eat good fresh food.  Sheeps Yogurt with fruit for breakfast - salads with various tinned fish for lunch - lots of veg and meat or fish for supper.  I enjoy nuts - wine - and I live in Crete - so lots of good olive oil on everything.  We have our own trees.

    I have had many surgical interventions for Crohns - but nothing for the past 25 years - before that it was a nightmare !  I take VitD - B12 injections ( No Terminal Ileum ) - B Complex and other bits and pieces.

    Giving up gluten could be a start for you - then dairy.  It can be a quick fix for some - but not for all - including me !

  • Hi Marz

    Thank you for your response. That's an interesting story. You are correct it is Graves although I haven't been diagnosed, but I do have one eye that is starey. How lovely that must be to live in Crete. Sunshine makes you feel better. I do need to look at my diet I eat a lot of convenience foods as I work full time. I think I need to do some research. Thanks again

    Lisa

  • I was once a full-time working Mum and travelled over a 1000 miles a month with my job as an Area Sales Manager with YSL - visiting many cities and stores - and dealing with lots of staff.  Long before the mobile phone and a computer !  Also coping with health issues !

    So how did I cope - well I had a slow cooker and always left food so the family came home to home cooked goodies which I had prepared the night before at some ungodly hour.  Loads of veggies - herbs and spices.  Is that too difficult ?

    I think I am blessed as I grew up on a farm in Somerset - so it was a case of cooking everything from the garden.  When I had to produce labels from canned foods from around the world for a school project - the only tin I could find in our house was a tin of curry powder !!

    It is just a different mind set - so try and pretend convenience foods do not exist and start from there.  Thankfully Crete is a bit like Somerset in the 50's .....

  • Yours is truly an interesting story. Somerset is lovely too. I've always considered myself a strong person. I dealt with breast cancer 15 years ago & sailed through that, but this has really knocked the stuffing out of me. I have to force myself to go to work each day I feel so nauseous every morning. I'm exhausted at the end of the day, but I do hear what you are saying

  • You are doing really well - just hang in there !  Click onto my name so you can read my Profile - the edited version  !!!

  • Hi Walker. I have all of those! Vitiligo since my teens,  coeliac and hashimoto's diagnosed end of 2013. I have suffered with terrible fatigue for the past 3 years. Gluten free diet and thyroid meds haven't helped. 

    I was found to have parietal cell antibodies at the end of 2014 but GP and endo said my b12 was normal. However the more I joined the dots the more I became convinced I had pernicious anaemia or, at the least, b12 deficiency. I started alternate day b12 jabs in November last year. No improvement yet sadly. 

    I also started supplementing with iron in December as blood tests showed level of 43. (20-300) range I think. Also began an expensive vitamin d protocol, again no improvements. 

    I believe marz may be correct in stating healing the gut is important. Unfortunately this means a very miserable autoimmune paleo diet for life! 

    What is your next step? How are you treating your hashimoto's?

  • Not always - just going without gluten is a start.  My anti-bodies have reduced after 3 years of being gluten free.  I think it took longer because of the Crohns - which is peaceful at present ....

  • My doctor said I was suffering from low B12 but not the anemia, then she said oh you are not low on B12, went out of the examination room came back 10 mins later and said you ARE low on B12, but did not prescribe B12 injections so I bought some myself and injected myself every other day for a month now am on one injection a month, then I will go back and have her check my levels again, this time with her giving me a correct diagnosis,

    All my other readings were correct within the limits.

  • Once you are supplementing B12 further testing is of NO value.  This is detailed in the Guidelines for Folate and B12 deficiency that your GP should have read.  Can send the link if you are interested. 

    Which other readings were within range ?  They could be LOW in range which is NOT helpful - where they are in range is key .....

    I would post ALL your result on the PAS forum here on HU - lots of very  knowledgeable people there who will help with excellent advice.  Think your Doc is in a fog ....

  • Hi Marz, i wrote to you a few times and have found your support invaluable. My mum has had two thyroid tests done and her t4 has stayed around 12-14 which i know is at the lower end of the reference range but her tsh has gone from 1.25- 4.75. I asked her doctor to test her t3 level and was frowned at and told its not necessary as she has a normal t4 level. My mum had alot of her bowl removed when she was 39  so a shortened bowel will probably mean she is not absorbing the nutrients from her food. The  steroids are bringing the esr down but i dont thinks her recent immobility/ fatigue is related to the polymalgia. Im convinced its her thyroid failing. I told the doctor i was faatigued when my tsh was 4.54 and had to suffer on for years until it shot over 10 ! Its disgraceful they can allow peoplr to suffer in this way. Im now pushing the point with the doctor incase as she told me Thyroxine would be dangerous for her heart at her age 80. Please write back your thought as they are much appreciated. I dont know how to pm you sorry, Vandewalle

  • Hi vandevalle - an in range FT4 does not mean your Mama is converting into the ACTIVE thyroid hormone T3.  T4 is not dangerous for her heart - it is TOO  little T3 that is dangerous.  I have bought - at great expense - a book called - Thyroid and Heart Failure.  You can find it on Amazon - LOOK inside and you can read the contents - Liothyronine is the star of the show - which is T3.

    Google Low T3 and hearts and you will find loads.  GP's are not able to keep up to speed !

    My lovely Mum died when she was 80 - some 16 years ago.  Sadly I did not have the diagnosis I now have or the knowledge that may have helped her.  Without doubt she had an undiagnosed thyroid issue.  When her heartbeat was irregular she was prescribed drugs for what they thought may be angina - I cannot continue - it is too sad and upsetting ....

    Do what you think is right for your Mum.  Can you have private testing ?  If so I can send you a link to Thyroid UK ....

  • That's  simular to my mum Marz, although she was diagnosed with hypothyriodism,she wasn't monitored properly.If only I new then what I know now ........ x

  • Hi Marz,

    Please send the link it would be interesting to see.

    Thanks.

    Rick.

  • bcshguidelines.com/document...

    I think its Page 8 .....

  • Marz 

    When does b12 deficiency become PA ? 

  • It is having the anti-bodies to Intrinsic Factor and the Parietal Cells that causes the LOW B12 - and is PA.   However - even with a negative reading of the anti-bodies you can still be suffering with PA .....

  • Hi Marz

    Is it worth asking for GP to retest B12 to make sure you're supplementing the correct amount? Is there any danger in going too high, or would that just be a waste of B12? Thanks.

  • No - once you are supplementing it is pointless having further testing as the results will be skewed !  Check out my link above in an earlier post.  You cannot overdose as any excess is excreted as it is water soluble .....

  • A young relative (aged 13) was facing an irreversible colostomy operation for severe (life threatening) crohns disease.  With only 2 days to go until the operation they acted upon advice by a nutritionist and started to follow Following the specific carbohydrate diet.  So much progress was made that the operation was cancelled,  They continue feel healthy and follow the diet which is less restrictive the longer it is followed.  A great site recommended by them wasL mercola.com Good luck! 

    '''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''

    Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. ……………………………………………………………………………………

  • Hello Walker, I have been treated for underactive thyroid for about fifteen years, and two years ago it was discovered I had low B12. At the time I was feeling awful, getting one infection after another, and getting numbness, aching joints and muscles, and my brain was struggling to the point I thought I was developing dementia. My GP started me on injections and I began to recover, I am now on six weekly injections. This was because the three monthly ones were not frequent enough, I could feel myself running out of strength towards the end of the three months.

    It is known to accompany thyroid problems, and we need a high level of B12 to help with conversion of T4 to T3. It was also found, more recently , that my VitD levels were low, so I'm supplementing that too.

    Best wishes 

    MariLiz

  • We have the same symptoms!

  • Where do I get information on gut healing? I Will be doing some iv nutritional therapy as well. 

  • People with high folate can still have vitamin B12 deficiency but without the anemia!  High folate masks the deficiency and although the B12 deficient person does not have anemia, he/she will have the neurological symptoms such as peripheral neuropathy (burning aching and tingling, especially in the feet).  I know this for a fact because at its lowest point, my B12 was as low as 85 but I was not anemic!  For people like myself, who exhibit NO anemia, this condition can go undiagnosed until permanent damage to the nervous system happens.

You may also like...