What is the B12 range with underactive thyroid? - Thyroid UK

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What is the B12 range with underactive thyroid?

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Thyroidseb
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shaws profile image
shawsAdministrator

I think it goes up to about 900 but this is a link which may be helpful.

healthunlocked.com/thyroidu...

Thyroidseb profile image
Thyroidseb

Hi, it's the lower end I was quite concerns about. I am really worried that they are going to leave me like this. Is there anyway I can supplement myself? I have been taking oral multivitamins with the RDA of B12 but was taking that at the time if the blood tests so obviously not working.

PinkNinja profile image
PinkNinja in reply to Thyroidseb

What was the result of your test?

Thyroidseb profile image
Thyroidseb

180 3 weeks ago and then 226 2 days ago.

PinkNinja profile image
PinkNinja in reply to Thyroidseb

That's too low for anyone. You really need injections with results this low and tests for intrinsic factor and parietal cell antibodies to check you don't have pernicious anaemia, which is an autoimmune disease.

If you really can't get the injections prescribed, the next option would be sublingual B12 tablets or spray which are methylcobalamin (not cyanocobalamin). The RDA won't be nearly enough to replenish your levels. You will likely need very high doses. I started on 5000mcg and now take 1000mcg, which is much more than the RDA.

Hopefully one of the members with more experience in this area will be able to help more.

Carolyn x

helvella profile image
helvellaAdministratorThyroid UK in reply to Thyroidseb

The RDA of B12 is a completely useless supplement except in those who have a diet that is very low in B12 and simply take it every day to make up for that. For anyone with compromised ability to absorb B12, it has no point.

Typical doses required for oral supplementation start at 500 micrograms and go up to, maybe, 5000 micrograms a day. However, with a test result like 180 I would have hoped a doctor would commence injections.

Most people think that methylcobalamin is better than other forms for supplementation. There are lots of discussions about which form, whether to leave it under your tongue, or buy a spray or a patch.

You simply MUST do something.

I'd consider looking at other resources such as:

pernicious-anaemia-society....

b12d.org

[If you click on Reply to this then the person you are replying to will get an alert and your reply will be indented nicely.]

Rod

Thyroidseb profile image
Thyroidseb in reply to helvella

Sorry to be a pain, so would your advice still be the same given the second result of 226 although no treatment was given?

PinkNinja profile image
PinkNinja in reply to Thyroidseb

226 is still way too low. You need to aim for over 500, according to the experts, to avoid neurological damage.

helvella profile image
helvellaAdministratorThyroid UK in reply to PinkNinja

Absolutely right Carolyn - as always. :-)

Given how poorly standard B12 testing identifies issues, don't play about near the bottom end. Do something now.

In an ideal world, get an Active B12 test, get injections, AND do some reading so you understand what is happening.

In this less than ideal world, try to get injections from your GP, and come back and ask if he/she won't.

Nerve damage from low B12 is irreversible.

Rod

in reply to helvella

Hi Rod, can I just clarify - if your B12 is low, taking supplements to bring the levels up only works if you do not have PA. Everyone seems to have their own opinion about sublingual etc, the only problems is that no individual can go back to the beginning and try a different method.

helvella profile image
helvellaAdministratorThyroid UK in reply to

I rather hoped that the original poster would visit the links I posted (and anywhere else) and see for themselves. There is an awful lot out there which I certainly don't know enough about.

Thyroidseb profile image
Thyroidseb in reply to helvella

It's knowing where to look, I find it all very confusing. I have been hypo for 12 years and still know very little. I've read many books but they all seem to be the same, people telling of bad experiences and not being listened to. All I know is that I am not well. With a full time job and 2 kids I'm at the end of my tether. I wish there was something definitive and easy to understand. Right now I feel like a fool :-(

in reply to Thyroidseb

Please don't feel like that because its not true. I have a science degree and still struggle with it all, not so much I don't understand the biology but there are too many conflicting opinions, even between doctors. However, I think there is one thing that is true and that is your B12 is far too low. You can supplement and I think the favoured one is Jarrows B12 methyl. However, before you do this is there any chance your doctor or an endo can get the tests done for you to see if you have pernicious anemia (lack of parietal cells or intrinsic factor). There are other tests to confirm PA but I am sure you need to be free from supplements for 2-4 weeks for the tests to be accurate. Would your budget run to private tests? As was said in a previous post if you have PA, supplements may not be sufficient to get your levels up.

lila2 profile image
lila2

Hi mine wae 207 dr refused to treat, said I was within range, I supplemented with 5000 b12 and raised my level to 800 , this improved my health significantly. Indeed I feel that optimizing my vit such as b12 and vit improved my health. X

hypossee profile image
hypossee in reply to lila2

can you tell me which b12 you took? I'm going through the same thing where m y doctor refused me for shots and my b12 is 165

Thyroidseb profile image
Thyroidseb

Hi, I saw my dr again today and I am being referred to a haematologist as my b12 showed as low but tests did not show me as anaemic and that is why they will not treat. Is this correct?

in reply to Thyroidseb

No this is not correct, B12 deficiency is commonly found in the absence of anaemia. From the Patient UK professional reference article:

patient.co.uk/doctor/Pernic...

"Neurological involvement may be present even in the absence of anaemia."

I despair that our doctors seem to have forgotten this basic fact. Do you have a long wait for the haemo? The GP should be testing you for antibodies against parietal cells and intrinsic factor, and most importantly treating you as per the "Management" section in the above document.

Hampster

helvella profile image
helvellaAdministratorThyroid UK in reply to

Could not agree more.

Why do they think that Red Blood Cell Distribution (RDW) is available to help in identifying the co-existence of iron-deficiency and B12-defiiency anaemias?

Rod

Thyroidseb profile image
Thyroidseb in reply to helvella

I have print out of all blood results from full blood count but don't really understand them. Too much to type, is there a way I can scan and add on here, see if anyone can make or tail of it?....please :-)

helvella profile image
helvellaAdministratorThyroid UK in reply to Thyroidseb

No way of posting here usefully.

Upload it to a "cloud" location such as DropBox and post a link.

Thyroidseb profile image
Thyroidseb

She admitted that she wasn't sure what to do next which is why she is referring me. No idea how long it will be. I was thinking if maybe trying to get some B12 to take in the interim as if it's anything like the physio, I had to wait 2 months.

in reply to Thyroidseb

Not a good idea to supplement at the moment, the Haemo will test you again and tell you you're normal. I'm afraid it's best to wait.

in reply to

What was your MCV (mean corpsular volume) result?

Thyroidseb profile image
Thyroidseb in reply to

It was 93 and she said that the range was 84-102

helvella profile image
helvellaAdministratorThyroid UK in reply to Thyroidseb

And RDW?

Thyroidseb profile image
Thyroidseb in reply to helvella

Not sure what that one is, can't see it on here. Is it likely to say anything different?

helvella profile image
helvellaAdministratorThyroid UK in reply to Thyroidseb

Exactly the issue hampster1 remarks on. You can have "normal" MCV because you have BOTH iron-deficiency and B12 deficiency.

in reply to helvella

Interesting - do they cancel each other out? or compensate? either way it's still anaemia?

helvella profile image
helvellaAdministratorThyroid UK in reply to

In term of coins:

You should have a pocket full of 10p pieces. But you actually have loads of 5p and 50p coins.

The average coin size works out to be about the same as if they were all 10p coins but very obviously most of them are bigger or smaller.

in reply to Thyroidseb

Red cell distribution width, normally part of the full blood count.

Thyroidseb profile image
Thyroidseb in reply to

Have red blood cell count? This was 4.25

in reply to Thyroidseb

MCV can be raised in B12 and folate deficiency, but it can appear to be normal if you also have low iron levels. So I would make sure the Haemo does iron tests as well when you see them. H x

Thyroidseb profile image
Thyroidseb

Serum ferritin was 83 in August. Serum folate was 10.1 when b12 was 180 on 29/8 and 9.7 when b12 was 226 on 24/9. That look right? I have been ignorant re thyroid til now, I realise that now but life has got that bad I need to find answers.

Chippysue profile image
Chippysue

Your levels are too low. Ideally your B12 would be above 500. To be prescribed B12 injections it is a similar battle to being diagnosed hypothyroid, in that your level needs to be below the B12 lab range, crazy I know! I would find out what your local B12 lab range is. If you cannot get the B12 injections diagnosed then I would buy sublingual lozenges. It is pointless taking B12 tablets as they will not work in the gut as this is the problem in the first place that your body is not absorbing B12 from food you eat. My B12 was about 289 and I have been supplementing with Jarrow's sublingual B12 for a few years now. I don't need to take one every day now as my level is usually around 1000. I can certainly tell when I forget to take them for too long. I notice lots of hair in the shower plughole for starters.

Sue

thyroiduk.org

nobodysdriving profile image
nobodysdriving in reply to Chippysue

Sue and others are correct, also there seems to be NO consensus on how often they do your injections once you do 'get them prescribed'....Most GPs will give you an injection every 3 months despite you 'dying' with horrible symptoms of B12 (like me! mouth ulcers/fatigue/cold/parasthesia/brain fog and loss of memory and coordination blah blah blah with a serum of 350 on 3 monthly injections), some give you bi-monthly some monthly, only a few VERY RARE doctors give it to you as often as you need it (ie even daily....I sussed out I really need my injections at least weekly or so so I self inject with approval of a private doctor but my NHS doctor STILL only gives it to me 3 monthly!)

Chippysue profile image
Chippysue in reply to nobodysdriving

That is so shocking! Doctors must be unaware of the importance of B12, wonder if they even covered it on their medical training!!! If you tell the doc you have these awful symptoms does he/she not think that they are due to low B12?? They just don't seem to care about patients, it is the cost I guess!

susymac profile image
susymac in reply to Chippysue

Mines the same. I'm just above the bottom level, have been for many years, have terrible symptoms of B12 deficiency also have anaemia, but the doctor refuses to treat.

I sent her the article from pulse that was posted here, made no difference. She wont even treat the anaemia or low foliates and I am below range!

I would change docotrs if I thought a different one would be any better, but tried that several times now and have developed an acute apathy towards all doctors. They dont care, they care about money and they care about guidelines (when they choose) but they dont care about patients

nobodysdriving profile image
nobodysdriving in reply to Chippysue

can't be the cost at a mere 69p per vial of b12, and I self inject so they don't even have to pay for the nurse to do it! ah!

Chippysue profile image
Chippysue in reply to nobodysdriving

I didn't know that it was only 69p that is shocking x

Thyroidseb profile image
Thyroidseb

Hello again, so I have ordered the jarrows 5000 sublingual, but how much should I take and how often. I need to feel better to get back to work and although a further test showed b12 of 205 dr will not do anything. I have been off work for 8 weeks now and dr signed of for a further 4. We have however moved from stress to exhaustion on my sick note!

Just one other thing......I'm not going mad am I? All the symptoms I have point to B12 deficiency and the numbers are low. Feel like I'm going crazy x

Winegum2 profile image
Winegum2

I've just had a result of B12 240, Folate 13.5 and Ferritin 18. I've just started (yesterday) on 2000 sublingual B12 and Spa Tone as constipation and abdo pains are already one of my worse symptoms. Still undiagnosed with anything despite TSH of 3.9 and a multi-nodular goitre, but I'll try anything to feel better!

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