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Pernicious Anaemia Society
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I'm at a loss

So I had my second child back in may 2014. My first had been premature with 4 blood clots of various organs...lungs spleen. Infarctions. Etc....

My second was also premature with pre eclampsia.

Since having my second. I've been really unwell...getting to the point of bed ridden.

So. The drs theory so far is sheehans syndrome with a pituatry infarct. But everyone is so slow with tests.

Blood tests so far

9am cortisol 147-278 (this is my range. Should be over 500 at 9am.

B12 177

Foliate 4.1

Oeastraidaol 136 (luteal phase.)

Prolactin 100

Thyroid is tsh 2.0

T4 12.2

Ferratin is 12. But iron is 144.

So......can anyone she'd any joy?!?! I literally feel like I'm dying.

Weakness. Aches. Nausea. Hair loss...legs arms. Everywhere..my eyebrows even. Dry eyes. Loss of peripheral vision (confirmed by eye dr) pains in my back. Tummy. Bp is always slightly high at 135/95. Confusion. Can't think straight. Irritability. Weight loss. Loss of appitite. Crave sugar and salt.

Blood sugar fasting is always around 6.3.

10 Replies

I'm so sorry sisqi that you're having so many oroblems - your B12 is low and you have obviously been deficient for a while as deficiency is involved in high homocysteine levels which can lead to preeclampsia in pregnancy.

Pregnancy makes huge demands on B12 and although the baby will take what it needs, this can lead to deficiency in the mother and cause symptoms such as post natal depression, hair loss, loss of peripheral vision, weight loss, confusion, weakness, etc. These are neurological and should be treated with injections without delay according to the BNF and UKNEQAS guidelines below until no further improvement, as there is a short window of opportunity before they become irreversible. I hope this extract from the BCSH guidelines will help persuade your GP to begin injections as soon as possible, as this will not rule out doing other tests.

"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

ukneqas-haematinics.org.uk/... :

b12deficiency.info/b12-writ... (List of symptoms and an excellent film)

cmim.org/pdf2014/funcion.ph... :

The above latest BMJ UK research document is supported by many research papers and has a useful summary if GP won't read full document. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that is important....

PS. What many GPs consider normal results are not, as "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." - 'Could it be B12?', by Sally Pacholok and Dr J.J. Stuart - a book I would thoroughly recommend.

Many researchers believe leaky gut/intestinal disease is the ground zero of autoimmune disease. PA/thyroid disease is therefore often interlinked and symptoms overlap and are misdiagnosed. I cannot stress how important it is to treat neurological symptoms urgently.

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Are you breastfeeding? If so you would probably be well advised to consider supplementing your baby's diet with B12 as your low levels mean that you won't have been passing much B12 on to your baby whilst breast feeding.

As polaris says your B12 is definitely low. Your folate is also low (though probably just in range). The two work together so you will need to build up your folate levels as well as your B12 or your body won't be able to process the B12.

Suggest you complete this checklist of symptoms


and go back to your GP/doctor armed with that and bits from the info that Polaris has given

If you are UK based then the BCSH guidance may be of use in clarifying for your doctor that it is clinical symptoms that count and that you need treatment


long document so suggest the summary p2 and treatment regime p8.

Your fasting blood sugar is more or less spot on so not really much to worry about there but good to have that checked out.

Cortosol problems are quite common with B12 and could also be a factor in the lack of energy

Can't comment on the thyroid ... not a condition that I have a known family link with.

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I've assumed you're in the UK.

So sorry to hear things are so hard for you. Do you have the reference ranges for B12 and folate?

Have you had a full blood count (FBC) recently? There can be useful clues on this. Look at your MCV, MCh and haemaglobin. I always get paper copies.

Have you been given an IFA (intrinsic Factor Antibody test) which can help to diagnose PA. Other tests such as MMA, homocysteine and Active B12 (transferrin) can help with the diagnosis of b12 deficiency as can a "blood smear" aka "blood film". These tests can be done privately.

My top tip would be to ring the PAS. If you leave a message they will get back to you.

pernicious-anaemia-society.... 01656 769467

Another useful website

b12deficiency.info/ It has a good section on writing to your GP.



Polaris mentioned the BCSH guidelines. I found page 29 useful. It's a diagnosis flowchart and mention B12 defic with and without neuro symptoms and also antibody negative PA.

"So I had my second child back in may 2014"

Did you have "gas and air" for any of the births? Gas and air contains nitrous oxide which I have read inactivates the B12 in your body. I believe nitrous oxide caused some of my problems. There are other medicines that can interfere with the uptake of B12 in body.



Useful books

"Could it be B12" by Sally Pacholok

Pernicious Anaemia; The Forgotten Disease by Martyn Hooper

Living with Pernicious anaemia by Martyn Hooper

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If family life is hard this may be helpful.



It sounds like you have a number of things going on, and B12 is one piece of the puzzle. I believe you when you say you feel awful! I had some kind of similar things, and the only one who helped was a really, really good endocrinologist.

Did they check your homocysteine and methylanonic acid? With high bp, preeclampsia, and blood clots I would think they'd want to look closely at B12, folate, and homocysteine.

Some of your other symptoms sound like red flags for thyroid and/or adrenal problems...doctors can be dismissive but if you can find a good endocrinologist that's a good way to go. As hard as it is to find a good doctor, I personally am cautious of turning to alt med for this sort of stuff because they mix quackery in with good care and lack expertise.

Just a note my fasting blood sugar was good. My glucose challenge was not. It showed prediabetes. I'd get sugar cravings, fatigue, swelling, thirst, dehydration.

I hope you can find help!


It is really important that you child not rely on your breastmilk and have his/her B12 levels monitored as well. I suppose you might use a formula as a supplement, providing it had plenty of B12 - however I am sure no expert in the matter of baby food, but do know that children can suffer severe delay and permanent damage to development from lack of B12 if their mothers' don't have enough themselves. See this film:

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I definitely agree with others here sisqi re breast feeding when you are already deficient. Vitamin B12 builds DNA, so adequate levels are vital to both mother and baby.

This film also has info on folic acid and how supplements taken in pregnancy, though important, can mask B12 deficiency.

Remembering how difficult it was in early years of having two small children, I can't imagine how difficult it must be for you feeling so ill.

I hope you have a supportive family around you to help fight for treatment.

Very best wishes.


Hello. Thank you all so much. Yes I've got high homocysteine levels. At 21. I'm not breastfeeding. I produced 1 drop. Not without trying ky hardest for both girls. No gas and air. Both emergency c sections.

My gp won't do anything for b12. My endo thinks bloods are fine and my hematologist says no blood issues.....except to take folic acid and aspirin.......where do I go from here??


I'm new on here and I think these ladies (or men?) have saved my life.

You have a lot going on, and you are severely low in B12. You need to get treated right away. Take the guidelines to your GP and insist on treatment.

You need to address all these issues. I took my mum with me last week (after giving my doctor a bunch of research and guidelines). He was shocked to see the state I was in.

I have practically every symptom of B12 def and think I have had it for yrs. My first serum B12 4 wks ago was around 430. It dropped to 260 in two weeks!

I had to fight for treatment, if I hadn't, I would be in hospital now in a very, very poor state.

These doctors are being grossly negligent in failing to treat you... your body is telling you something is wrong and the bloods are showing that.

I would suggest taking someone with you to your appointment who will speak up for you. It is much easier.

Watch the film as suggested, it explains things really well.

This disease seems to be off the radar.

Good luck


Sleepy bunny. Thank you. Yes in the UK. I have a wonderful nanny. I also have fantastic support. With a husband who works from home 90% and my family live near me. So thank you


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