My blood test results have shown that my B12 is 221 (range 203 -).
A member of the Hypothyroidism page advised that this is way too low even though it is in the normal range. I intend to take her advice and request further testing despite the fact that my GP said it was probably normal for me.
I am just looking for further advice/insight from this thread, please.
Other results low in range are:
WBC 4.8 (4-10)
Folate 8 (4-)
Ferritin 51 (11-307)
Levothyroxine does not seem to be helping my fatigue and low mood which were thought to be due to hypothyroidism. I wonder why they could be due to the above results which GPs seem unconcerned about as they fall within the normal range.
Also, my maternal grandmother had pernicious anaemia. She died aged 28, in childbirth, due to complications of pernicious anaemia (this was in the 1930s though!).
I was wondering whether there is a genetic element to the condition?
Any advice would be welcomed.
Thank you.
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Buntikins
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Yes ,there is certainly a genetic element concerning P.A. Your GP should know this . GPs sgould also know that you can have a normal B12 blood serum result an£ still have P.A. You symptoms should be the clue to any diagnosis . But you will discover that the medical profession is very ignorant about P.A. .
P.A. is an autoimmune condition , and they rarely come alone . The most common” companion condition” to accompany P.A. is a thyroid condition - and also Rheumatoid Arthritis. There are over 100 autoimmune conditions !
You have certainly come to the right place with any questions concerning P.A.- Best wishes .
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
I urge UK forum members to track down the local B12 deficiency guidelines being used by their ICB (Integrated Care Board) or Health Board. If you can't find them online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Some local B12 deficiency guidelines are not helpful. See blog post below.
Local B12 deficiency guidelines are likely to be reviewed after new NICE guidelines on PA and B12 deficiency are published in November 2023.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Wow! Thank you, Sleepybunny, that is a wealth of useful information.My GP doesn't know about my family history. I asked whether the low ranges (above) were meaningful, and was told they were not, as they were in the normal range, and although at the lower end, could be normal for me.
I accepted that, but have recently started to think about it again as Levothyroxine is not helping my hypothyroid symptoms and I am sooo fed up of being mentally tired, lethargic and feeling emotionally 'flat'. I'll make another appointment and tell them my family history.
It's about writing a letter to GP if you have the symptoms of B12 deficiency with a normal range serum B12 result.
I suggest you discuss your family history of PA at next appointment and mention it in any letter you write to GP. Maybe take a copy of the BSH diagnostic flowchart with you.
I often suggest people put queries about treatment/diagnosis into a letter as I feel this is harder to ignore. Letters to GPs are supposed to be filed with your medical notes so can be proof you have raised an issue. Always keep copies.
Some quotes that might be useful to include in a letter.
From NHS B12 deficiency article
"It's also important for your symptoms to be taken into account when a diagnosis is made.
Some people can have symptoms and also seem to have normal levels of these vitamins"
"Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood.
This can happen as the result of a problem known as functional vitamin B12 deficiency, where there's a problem with the proteins that help transport vitamin B12 between cells."
Seeing a specialist does not guarantee better treatment or a better understanding of B12 deficiency. Make sure you are well prepared and have done some B12 homework in case the specialist has not done theirs.....
My understanding is that if you have neuro symptoms you should be referred to a neurologist and/or haematologist.
Neuro symptoms include....
tinnitus
tingling
pins and needles
insect crawling sensations (formication)
electric shock sensations
numbness
twitching muscles
flickering eyelids
restless legs syndrome
periodic limb movements
migraine
brainfog
memory problems
poor balance
unusual gait (strange way of walking)
clumsiness
bumping into things
dropping things
proprioception problems
(proprioception is awareness of where your body is in space)
If your balance is worse when it's dark, your eyes are closed or your view of your surroundings is blocked then proprioception sense may have been affected.
The above are only a few of the possible neuro symptoms linked to B12 deficiency. See Symptoms lists in my other posts.
If GP remains stubborn about considering treatment then may be worth discussing in letter/conversation that delayed or inadequate treatment increases the risk of developing permanent neuro damage including damage to the spinal cord, SACD (sub acute combined degeneration of the spinal cord).
I am not saying you have SACD, I'm not medically trained.
I am saying that your GPs and any specialists you see, should be aware that B12 deficiency could lead to SACD if it's under treated and mentioning it in letters/conversations may make them take more notice of you.
PAS article about SACD, sub acute combined degeneration of the spinal cord
definitely family history is a red flag for PA, also no one should have a level of 200s if they are eating a normal diet. You may not be on death’s door at 200 but it will no doubt keep getting lower and eventually get to that point. You do not want it to get any lower which it will if you don’t treat it. Damage can be permanent if you get into the 100s range. And considering you already have thyroid problems it is very very common to have comorbid PA and hypothyroidism. So I definitely recommend treating the b12 deficiency with injections. You can still feel very poorly with b12 as low as that. Ideal levels of b12 are more like 800-1000 which is important for optimal brain nervous system and immune system functioning.
I had 190 and was bed ridden. Everyone is different in that they experience varying severity of symptoms at different levels.
After daily injections for 2 years I'm very active! It's amazing!
Follow the links sleepy bunny sent you. Find a doc who will teach you to self inject and don't let them talk you into spacing out the injections. Most of us just order the supplies and do it without a prescription once trained by the medical staff to self inject (SI).
Don't tell the doc that is what you are doing u less they are very supportive. Typically I found most docs don't understand b12 deficiency and ingnore it. I agree, 200 is very low. No one should be that low. The medical text books and the b12 range needs to be fixed. Until then most of us just treat ourselves.
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