Pernicious Anaemia Society
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Newbie... advice please

Hi there, just popping over from thyroid UK for some advice and your thoughts please. I was diagnosed Hypothyroid by my GP in May 2016. I am currently on 75mcg Levothyroxine. Apart from a swollen tongue on which I have candida, and constipation that I take magnesium for, I consider myself very fortunate that I do not have any other symptoms.

My Grandmother died when I was a small child of PA and bowel cancer. My blood results as follows:

AUGUST 2016

Serum B12 395 (190.00 – 900.00ng/L)

Ferritin 102 (20.00 – 250.00 ug/L)

Folate 20.7 (2.00 – 19.00ug/L)

RBC 3.88 (4.20 – 5.40 10*12/L)

MCV 96.9 (82.00 – 102.00fL)

MCH 32.3 (27.00 – 31.00pg)

January 2017, I saw a private doctor for a more comprehensive picture of my health and was told in light of my family history I would at some stage need B12 but he wasn’t insisting I needed to do anything about it at the time.

ACTIVE B12 254 (25.1 – 165.0 pmol/L)

ESR 24 (1 – 20 mm/hr)

MCV 92.6 (80 – 99 fL)

MCH 30.2 (26.00 – 33.5 pg)

Iron 14.2 (6.6 – 26.0umol/L)

Ferritin 104 (13 – 150 ug/L)

Folate 546 (285.4 – 1474.7 nmol/L)

Intrinsic Factor Antibodies 8.1 (<6 U/ml)

JUNE 2017

Serum B12 412 (180.00 – 640.00ng/L)

Folate 17.1 (3.00 – 20.00ug/L)

Ferritin Not requested by GP

MCV 93 (82.00 – 102.00fL)

MCH 31 (27.00 – 31.00pg)

RBC 4.31 (420 – 5.40 10*12/L)

In 2016 and at the time of my private blood test I was taking a 50+ multivitamin. My iodine was very high so I stopped taking them. I not on any supplements at the moment but I eat lambs liver once or twice a month.

Your advice would be much appreciated.

17 Replies
oldestnewest

Many thanks for your reply Eoaz. It's been niggling me at the back of my mind for so long. I read that B12 should be upper half of range and anything below 500 can cause damage to nerves.

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Intrinsic Factor Antibodies 8.1 (<6 U/ml)

What did your private doctor say about your anti-intrinsic factor antibody test? This appears positive to me (though I'm not a medic) as it is above range ie you have Pernicious Anaemia.

I'd go back to your GP and discuss your anti-intrinsic factor antibody test (especially in light of your strong family history) and request B12 injections for life as per the BSH guidelines. pernicious-anaemia-society.... I wouldn't wait until your levels drop or develop symptoms (presuming you don't already have some!) as this runs the risk of developing neurological damage.

Your B12 levels currently look reasonable but if you were supplementing these tests aren't necessarily a true representation of what is going on. Did your supplements have high levels of B12 in them? Even with PA a small amount can be passively absorbed (~1%) so if these had highish levels of B12 in they may have skewed your results even months down the line.

Do you have any symptoms of a B12 deficiency? pernicious-anaemia-society.... It may be hard to tell what is being caused by your thyroid problems and which B12 though, sorry.

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taka

Thank you so much for your input. The private doctor told me over the phone about the intrinsic factor antibodies. I was so eager to know what was happening to my thyroid though. I remember him asking would I consider B12 injections in the future to which I said yes but I would really like to know about my thyroid first. I did go to my GP about my B12 and had the blood test in June '17. That doctor then left the surgery. When I got a printout of my results another doctor wanted me to reduce my Levo. By the time I fought my corner to stay on 75mcg with a TSH of 0.05 I forgot all about discussing my B12! So I will definitely see my GP about the antibodies. The supplements had 200ug of B12 which was recommended to take 2 daily. Reading down the list of PA symptoms I can honestly say all the cross over symptoms I had, shortness of breath, fatigue, brain fog, mood swings, sleep disturbances have all gone since my TSH has become suppressed. I feel good, normal. I'm enjoying my life. I do have tinnitus but that started years before I was hypo. I have noticed of late though, not every night, not even every week, a pin prick feeling in a toe. Not always the same toe. I reach down and stick a finger nail in it and it usually goes before I fall asleep!

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Hyposucks The only way to definitely up your B12 levels in someone with pernicious anaemia is to have B12 injections. Things like tinnitus and pins and needles may well be symptoms of your PA.

In the UK the treatment is hydroxocobalamin injections and this is either:

No neurological symptoms: 6 injections over a 2 week period (every other day) then 1 injection every 3 months.

With neurological symptoms: Injections every other day until no further improvement (with a review at 3 weeks) then injections every 2 months.

Pernicious anaemia is an autoimmune condition which means your body has attacked your parietal cells and you have developed anti-intrinsic factor antibodies. These antibodies bind and consequently lead to the destruction of any intrinsic factor (IF) your body can produce. IF is essential to transporting the large B12 molecule out of your gut and into your body where it can be used. With no IF available you cannot absorb the B12 in your diet. PA = No IF = very little B12 absorption, (maybe only ~1% by passive means).

Taking 400mcg B12 daily for a long time may well have been enough to drag your B12 levels off the bottom of the range and confuse things. Having injections means the B12 bypasses IF and any age or PA related absorption problems altogether so all of it should be available to be used.

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taka, I'm so grateful for your help and will indeed see my doctor asap. I only took the multivits because my daughter bought them for me as I was 'getting on' in years... bless her. PA never entered my head at the time.

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Good luck! :-)

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Sorry if I'm being a pain but this is so interesting. I also read this (not the whole the book) -

An extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml.

Now I have got to being an 'older person' (66) is it advisable to up my level a bit? I also watched the PA society conference by Prof David Smith on B12 being a key player in preventing atrophy that leads to altziemers.

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If people with serum B12 less than 500, let alone the totally ridiculous figure of 1000, were to be given B12 injections as a matter of course then we would have anything between 50 and 70 million people getting jabs in the UK. That would mean we'd need to increase the NHS budget by over a billion quid a year, for something almost totally unnecessary.

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Hyposucks - I think the 1000 relates to people who have been identified as having a B12 absorption problem and are receiving treatment for it with injections ... and it is an average of where people report that their levels need to be if they are to be okay ... but injections introduce some significant factors - not related to absorption but to being able to get B12 from blood to cell - that mean that the normal range is no longer applicable anyway.

Please don't take high dose supplements unless you are sure you have an absorption problem - raising serum B12 levels too much can cause problems in some people.

The last time I checked up on the results of investigation into B12 and dementia I think the evidence was not supporting the idea that B12 can prevent dementia, unless the dementia is the result of an undiagnosed B12 deficiency.

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Gambit62 - I can see I have much to learn. I hope doctors understand more about PA than thyroid issues, there's only so much fight in me to keep me as healthy as I can be in old age. ;)

So thankful for the HealthUnlocked forums.

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Good luck with expecting your doctor to know more about PA than you might know. Lol. It's not going to happen. Please let us know if I'm wrong.

I have certainly found since I started to self inject that my memory has improved dramatically from where I thought last March that I was getting dementia. It's perfect now including remembering names!! I can't believe the improvement in such a short time. All my neurological symptoms have gone but start to come back if I don't inject at least every six to ten days. I'm 68.

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Bengie,

Lol, well thanks, that's just great. What do these doctors do at med school for goodness sake. It's okay though, I'm a woman, supermom, supergran, superwife, I can do it.... yes! Sigh! So happy for you that your memory and name recall have returned. Hypo does weird things with memory/speech.... words slur that's if you can remember them in the first place... I was speaking to my daughter-in-law and mid sentence said 'your wife' WHAT? Where did that come from? Sometimes I wish I had a rock to crawl under... lol. ;)

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Hyposucks, I have all the "Super"s" that you have. 2 Grandchildren 8 and 6 but doctors will exhaust you. I think they learn about half a day on Vitamins in College and unfortunately our deadly PA B12 is also a Vitamin? Good luck with your doctor. I live in Ireland and just bypassed mine and went down the road of Self Injecting thanks to all the encouragement I got here. It's been a life saver? I hope it helps you too.

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Hi,

Intrinsic Factor Antibodies 8.1 (<6 U/ml)

Your intrinsic Factor Antibody test appears to be above range or positive. Along with a family history of PA that seems significant to me (I'm not a medic).

This flowchart below outlines when PA can be diagnosed in UK.

healthunlocked.com/pasoc/po...

Link to BSH Cobalamin and Folate Guidelines

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

Uk document that outlines treatment and diagnosis of B12 deficiency

PA requires lifelong B12 injections.

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

PAS can offer support and information about PA to PAS members.

B12 blogs

Martyn Hooper's blog about PA.

martynhooper.com/

There is an interesting blog on B12 Deficiency Info website

b12deficiency.info/

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin 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 book about B12 deficiency with lots of case studies.

I note that you did not have a ferritin test in June. Previous ferritin results seemed good.

Low iron can lead to small red blood cells (microcytosis). Low b12 and low folate can lead to enlarged red blood cells (macrocytosis). In someone with low iron and low B12/low folate their MCV and MCH may appear to be normal range because the effects of low iron can mask the effects of low B12/low folate.

MCH 31 (27.00 – 31.00pg)

Your MCH is at the top of the normal range.

Links about blood tests

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

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Sleepybunny

Wow, many thanks for so much information and reading material. That will keep me going for a while! :)

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Eaoz,

Ah, interesting.

RDW August 2016. 12.5 % No range given.

RDW January 2017. 13.1 (11.5 - 15.00).

RDW June 2017. 12.7 % No range given.

Now I'm confused but that's not difficult :/

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Eaoz, many thanks for explaining. Your a star. ☺

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