Heading towards deficiency? - Pernicious Anaemi...

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Heading towards deficiency?

threef profile image
8 Replies

Hey all

I'm pretty new to this so apologies for the long post. I'm 23, diagnosed with autoimmune hypothyroidism in 2017 but levels now "stable", I have been struggling with symptoms such as brain fog, extreme fatigue, low libido, depression, joint aches and pains, pins and needles, restless legs this whole time, but I feel they get worse over time. Feel it's important to note I am not a vegan or vegetarian and eat a fairly balanced diet.

I had my b12 tested about 8 months ago, which came back as 196 (range 180-995), and again recently, which came back as 188, (range 180-995), I asked if this wasn't fairly low especially if I'm getting symptoms and my gp brushed it off saying I definitely didn't have a deficiency - I'm sure I read somewhere they're meant to test intrinsic factor, but this and active b12 have never been tested. She suggested oral supplements but from what I've read you're not meant to supplement until proper tests have been done, so...where do I go from here?

All I do at the moment is work and sleep because I feel too unwell for anything else. Any help would be appreciated because I'm worried in 6-8 months time my level will have dropped lower.

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threef
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8 Replies
Gambit62 profile image
Gambit62Administrator

The results are actually remarkably consistent given that the test is only accurate to within 20%. Despite being low that suggests that you don't have an absorption problem because if you did you would expect to see the levels falling significantly - 20% +

However, that doesn't necessarily mean that B12 couldn't be part of the problem as you are at the bottom of the scale.

You could try taking supplements of about 10-50 mcg a day (not huge doses) as these wouldn't have any impact if you did have an absorption problem but would improve things if the problem is dietary

Symptoms do overlap with hypothyroidism and it is, unfortunately far from uncommon for thyroid to be undertreated - problem is the use of a normal range in patients who haven't been treated is assumed to be applicable after treatment - similar problems with B12 absorption problems. If you have your thyroid results I suggest you post them on the TUK forum.

healthunlocked.com/thyroiduk

Supul profile image
Supul

Hi threef

I suffer hypothyroidism. Nearly 30 years diagnosed.

I would recommend you read Izabella Wentz books or Google her.

There is a vast amount of information nowadays, regarding thyroid health and help.

Consistently, literature agrees that thyroid patients should have an optimum level B12 reading. Most would agree your B12 is far too low. No wonder you are feeling so tired.

Take care. And, think about joining a support group.

Health unlocked and Midland thyroid support as well as thyroid UK are invaluable resources for me.

Foggyme profile image
FoggymeAdministrator in reply to Supul

Supul - for clarification: whilst optimal levels of B12 may be applicable to those with thyroid issues, the idea of optimal levels of B12 is not applicable to those with Pernicious Anaemia or those with B12 deficiency from other (none thyroid) causes.

threef as per Gambit's reply: your levels are at the bottom of the range and may be low enough for you to experience the symptoms of B12 deficiency.

If you read the information in the links in the fourth and fifth PAS pinned posts to the right of this page, this will give you more information about B12 deficiency and the problems associated with serum B12 testing and diagnosis.

The is much cross-over between hypothyroidism and B12 deficiency so it's often difficult to tell which symptoms are due to which condition. If you are sure that your thyroid is adequately controlled, might be worth pursuing the potential B12 issues with your GP...and of course ask them to investigate and rule out other potential causes for your symptoms (I.e. diabetes, another underlying autoimmune conditions etc.). They should want to get to the bottom of this for you. Low folate, iron deficiency anaemia of vitamin D deficiency can cause some of the symptoms you describe...good idea to get these checked. And, in particular, if your GP cannot find a cause for your neurological symptoms, ask to be referred to a neurologist for further investigations (it's your right to ask for this and unexplained neurological symptoms should always be investigated).

Ask for autoantibody screen and test for inflammatory markers if you want to rule out underlying autoimmune condition.

Suggest you print the information relevant to your case (in the links suggested) in the links suggested and re-approach your GP about prescribing B12 injections (taking the evidence with you).

You are only 8 above the bottom of the range - think I'd be tempted to smile and ask your GP if deficiency suddenly kicks in if or when you drop 8 more points (a nonsense idea but I'd love to hear the response).

Good luck and post again if you need more help or have more questions when you've been through the information in the links.

👍

Supul profile image
Supul in reply to Foggyme

Oh yes, thank you for clarification for members.

It wasn't my intention to mislead anyone.

Foggyme profile image
FoggymeAdministrator in reply to Supul

No problem Supul. B12 can be quite a tricky monster 😉🙃

GastritisB12 profile image
GastritisB12

If it helps for info, in the USA some studied for B12 treatment selected people with B12 under 245 ng/L (that's in UK units) as low for the study.

So in the USA you would be categorised as low.

fbirder profile image
fbirder in reply to GastritisB12

Different test procedures use different normal ranges. So some test companies in the USA will describe anything below 245 ng/L as low. Others - psycnet.apa.org/record/1971... - might use 150 ng/L. Others 211 ng/L journals.sagepub.com/doi/ab...

threef profile image
threef

Thank you to everyone who's replied to this thread. I'm going to do some research, read a couple of books and hopefully go back armed with enough information to get the right testing (and if not, then I'll pay for my own) to get this sorted.

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