B12: My B12 if fluctuating between 192 and 24... - Thyroid UK

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B12

Katepots profile image
Katepots
β€’21 Replies

My B12 if fluctuating between 192 and 240 but my damn GP tells me I'm in range and don't need injections. I feel terrible. Have loads of deficiency symptoms.

Apparently supplements don't get absorbed very well and so are pointless to take and injections are the only way to treat, is this true?

Thanks.

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Katepots profile image
Katepots
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21 Replies
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misslissa profile image
misslissa

No advice but I'm really interested to know the advice πŸ€”

NatChap profile image
NatChap

I don't know enough about injections to advise but you can take sublingual b12 which may be absorbed better. Also you need to take a good b complex as they work together.

That is way too low though.

LtAngua52 profile image
LtAngua52

I had the same problem with my GP. I had severe neurological symptoms which if caused by the low b12 can become irreversible if left untreated. I gave my GP all the relevant documents that guide him to treat me by injections but no dice. That is because, like the thyroid, doctors don't know enough about b12 deficiency either. I started taking sublingual b12 lozenges every day, 5000mcg which helped enormously, but they wore off quickly. I took 10 a day! From Amazon and by jarrow. I turned to injections instead because they were not enough but I have been deficient for about 15 years by then. Lozenges, sprays etc will be enough if you are recently deficient I should imagine. Your b12 level is really low.

Many people with thyroid disease don't have enough or little stomach acid leading to poor absorption of b12. Take a look at the pernicious anemia society website for more information and also b12d.org and b12awareness.org for information on symptoms and treatment. Lots of docs too to give to your GP. There is no harm in trying the lozenges as you can't overdose on b12 as it is water soluble so excess is just excreted away. Good luck. :-)

marigold22 profile image
marigold22β€’ in reply toLtAngua52

You are so knowledgeable on this subject. I think back to when I was wandering around the house in total zombie mode, knowing I had a very low thyroid, been given T4 & told get on with it; and I kept wondering what it was I should be taking to make myself better. Was it iron, vitamin C, - I thought of the obvious vits/minerals. In the end it's a complicated jigsaw puzzle of deficiencies.

Katepots profile image
Katepotsβ€’ in reply toLtAngua52

Yes I have neurological symptoms and with my history I'm guessing I've been deficient for a lot of years!

Where do you get your injections from?

Thanks.

Katepots profile image
Katepotsβ€’ in reply toLtAngua52

Yes I have neurological symptoms and with my history I'm guessing I've been deficient for a lot of years!

Where do you get your injections from?

Thanks.

LtAngua52 profile image
LtAngua52β€’ in reply toKatepots

I would try the sublingual lozenges first. They dissolve under the tongue so if you have an absorption problem it will be bypassed. I got them from Amazon, made by jarrow. If nothing else, if you improve on them like I did it confirms b12 deficiency. As clutter says, take a good b complex too, I use solgar ones, again from Amazon. I wouldn't go straight onto injections unless you really have to. :-)

Clutter profile image
Clutter

Katepots,

If you have gut issues reducing absorption sublingual lozenges, spray or patches will ensure good absorption. Try 5,000mcg daily for 2-3 months and then reduce to a daily maintenance dose of 1,000mcg. Take a B Complex too.

________________________________________________________________________________________

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.

ChristinaT profile image
ChristinaT

Have you already been diagnosed with PA/or a B12 deficiency already? If so how often are you receiving injections? Deficiency levels are usually anything under 200-300 (depending on the lab) so they are indeed low.

Katepots profile image
Katepotsβ€’ in reply toChristinaT

I had bloods done from blue horizon came back as insufficient at 190.

Not receiving injections or supplement from GP as she said levels were OK!!

ChristinaT profile image
ChristinaTβ€’ in reply toKatepots

I am so shocked that they won't even consider giving you injections. I bet your range is 150, even so any gp in their right mind should be able to see you are deficienct. Also you'll feel a lot of better thyroid wise aswell once you get these levels up.

Katepots profile image
Katepotsβ€’ in reply toChristinaT

Think range is 140 from what I can see. Sorry for late reply!

ChristinaT profile image
ChristinaTβ€’ in reply toKatepots

Hey again 😊 jeez that's such a low level for the range they use πŸ˜”. The only thing you really need to know at this stage is whether or not you have PA. The supplementing isn't the issue because we can provide you with info on how to self inject if you did want to do this? Or you could at least start supplementing with tablets if you knew you didn't have PA. I had a look at the nice guidelines the other day and it says something about they can retest your B12 or look into it further if levels fall in an intermediate range (outside deficiency range). I'm pretty sure you would qualify to at least be investigated for PA? It's worth a try? Or maybe try and get a private blood test to check for this (not that you should have to) The PA society are brilliant when it comes to this, (b12 issues) they have the latest updates on the treatment of B12 issues, you could get a second opinion from them? You have to pay a fee but they are fantastic. Have a think about what you want to do and then we can discuss it with you if your unsure about anything. I so desperately want you feeling better, having low B12 is horrible and you can get sorted fairly quick it's just the PA diagnosis that needs confirming or ruled out ideally.

Katepots profile image
Katepotsβ€’ in reply toChristinaT

I got my GP to test for the intrinsic factor (think that's what indicates PA)

I'm guessing it was negative as haven't heard back but I'll ring again today to check.

Thanks so much for your help and advice. I can't believe that the medical profession are so ignorant when it comes to thyroid and B12 issues. It's disgraceful.

I'll get back to you with result later.

Thank you!

ChristinaT profile image
ChristinaTβ€’ in reply toKatepots

That's brilliant because either way we can get you to start supplementing asap πŸ˜ƒπŸ‘. You feel a lot better when you do. Let us know when you do and we can take it from there

Katepots profile image
Katepotsβ€’ in reply toChristinaT

Hi Christina,

The intrinsic factor test was negative so no PA I guess. :)

ChristinaT profile image
ChristinaT

Also I too have a B12 deficienxy. Mine was 187 when diagnosed. The lab who tested mine was anything under 300, but if your is 200 then you certainly have been deficient at some point. I now self inject because I found my levels were dropping fairly rapidly in the past. The PA society are very helpful with advice on B12, you have to pay a fee to join but I can assure you the help is there if you ask what you can do to get around this. The only issue is at this stage is that you could do with knowing if you have PA or not. They won't normally do investigations for this until they confirm your deficient. (Though those levels are deficient) ive just looked at nice guidelines and it says something about if levels are in intermediate range then they should do a second test? Not sure if that would enable you to get retested. I think the first thing you need to do if confirm what the range is that they use. Then you can identify if they have indeed left you untreated when your levels have fallen below range. If this is the case then I think you should consider going back and demanding them to tell you why they never gave you injections, and that your going to make a complaint...... the range for b12 is usually 200-300. I would be very shocked if the range your drs use is below this, that being said it might be, hence that's why they haven't treated you. Get the range details and report back πŸ‘.

humanbean profile image
humanbean

Anyone wanting information on the subject of B12 should join the Pernicious Anaemia Society community here on HealthUnlocked.

healthunlocked.com/pasoc

Edit : I've just realised this sounds rather mean! :O Sorry! I wasn't intentionally being disrespectful to the people who've already given excellent advice above.

scorpiojo profile image
scorpiojo

Hi, I was diagnosed with a range in the low 90s my GP said it's not that bad lol... Apparently talking to the PA society I found Essex have the lowest range at 150 the lowest start range!! The worst of this is the fact an IF test only confirms some and others can have PA even on a negative test, so uneducated or money saving docs will choose to abide by a false negative... I'm not saying the test isn't worth doing, but to know the fact that it's really hard to get that diagnosis on the tests available is handy... If you go on to then have the wrangle over jabs like me where he's come up with a bizarre amount of jabs, you soon realise you have no option if you don't absorb than to inject yourself.. If nothing else I figure I will have tried, and boy if it does make me better I'm going to make a fuss about having to do this this way.. I have the ampoules, today the needles came and Sunday I will take my 1st self administered lot.. I'm not going to get anywhere with the fortnightly jabs for 4 and then every 3 months, so this is the only way!! Please go over to the PA forum I don't know what I would do without them... I know through this page, until I have things all firing well my thyroid meds wont work etc etc... Good luck and it'll be nice to see your unfolding story... Jo x😊

Katepots profile image
Katepotsβ€’ in reply toscorpiojo

Thanks for that info Jo. I'll have a look now.

Where do you get your injections from?

X

LtAngua52 profile image
LtAngua52β€’ in reply toKatepots

If you really want to start supplementing with injections I would repost on the pernicious anemia society community. Just click on my communities above and then click on browse communities to find the pernicious anemia society forum. Click on follow and you've joined! You can then ask on a new post. Good luck! :-)

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