b12 extremely tired

[Janeylou69]

im hypothyroid and I'm on 3 monthly b12 injections im finding that over a month before im due mynext jab I get extremely tired and i cannot stop falling asleep and it's also worse when I'm on my monthly period i ,don't know what to do ,I feel terrible ,really lightheaded pins and needles in my feet ,legs and arms ,tingling, is this normal .

[SeasideSusie Remembering]

Janeylou69

Some people find that 3 monthly injections aren't enough, some have had the interval reduced to 2 monthly but some top up in between either with sublingual B12 or self inject. You might find it helpful to post on the Pernicious Anaemia forum here on HealthUnlocked as I believe there are probably quite a few who help themselves in between their regular NHS injections and they may be able to offer advice:

healthunlocked.com/pasoc

[Janeylou69 in reply to SeasideSusie]

Thanks seasidesusie I will look into that .

[SlowDragon Administrator]

You can request B12 injections are more frequent, try every two months

[Janeylou69 in reply to SlowDragon]

Hello I will mention it to my doctor but they don't always let you change it .

[Sparklingsunshine in reply to Janeylou69]

Hi

I'm in the same boat, I've begged and pleaded for more injections but recent blood tests showed my B12 is above 2000, so I cant now convince them I need more frequent jabs. Of course I've no idea how much is getting into my cells.

You could try a methylcobalamin mouth spray daily, sprays bypass the digestive system which doesn't work well for those of us with PA. I don't know if you have it but taking B12 in tablet form never worked for me. I buy mine from Amazon. Its around £7 for a month's or so supply.

Or the PA forum on here is a mine of information on how to source and administer your own B12 jabs, if that's a route you want to go down.

[Marz in reply to Sparklingsunshine]

The British Haematological Society state that testing whilst supplementing is not advised as results are skewed 🌞

[Sparklingsunshine in reply to Marz]

Hi

I know, which is why I've never tested myself, this was an NHS test that covered iron, ferritin, folate and FBC. I don't know GP's don't realise the futility of testing once on jabs.

[Marz in reply to Sparklingsunshine]

Perhaps showing them the info from the BHS will change their stance. It was once a Pinned Post on the PAS Forum ....

[shaws Administrator in reply to Janeylou69]

I have pernicious anaemia as did my Mother (now deceased) and she had regular B12 injections for some years until the GP told her that her bloods were fine and she did not need B12 injections now.

That decision made to my Mother caused her to develop stomach cancer - dreadful.

I also have Pernicious anaemia but my GP told me I can have as many injections as I feel I need.

[Janeylou69 in reply to shaws]

Hi Shaw what is your symptoms with pernicious anemia ,I know that when I first got told I needed b12 injections ,I was extremely tired ,lost quite a bit of weight and other weird things ,I'm even worse now the tiredness is extremely more and I just would like to sleep all day and I'm lightheaded ,I'm worried about all this .the weight loss has started again and I ache all over ,my muscles feel awful ,thanks for your reply .

[shaws Administrator in reply to Janeylou69]

I've never had symptoms of a B12 deficiency as I began with regular B12 injections once diagnosed as having Pernicious Anaemia.

[hipolion]

I think your simptome suggest overdose.

[Jazzw in reply to hipolion]

On what basis have you decided that??

[Janeylou69 in reply to hipolion]

I don't know about that ,hopefully it's not that .

[hipolion in reply to Janeylou69]

Your symptoms can be deceiving. You may think they are from a hormone or vitamin B12 deficiency when in fact they are from an overdose. But maybe I'm wrong. When I reach a too high doses (without realizing it, thinking I have room to grow) I have exactly the symptoms you described, but I learned over time to control them.Then I know I have to reduce the dose a little.

[shaws Administrator]

Has your GP checked that you do NOT have pernicious anaemia. If you do, you need monthlly injections as stomach changes may have occurred and no longer be able to absorb B12..

[Janeylou69 in reply to shaws]

Hi Shaw I did get checked for pernicious anemia when I first got treated for b12 they did tests and I had a colonscopy but that was in 2018 so I will mention it to my doctor to see if it could be that thanks for your reply .

[helvella Administrator Thyroid UK in reply to Janeylou69]

If they tested Intrinsic Factor antibodies, be aware that something like 50% of tests on people with Pernicious Anaemia are negative.

Sometimes repeating tests will get a positive result eventually. But some had several tests before getting a positive.

As SeasideSusie suggested, you'll probably do better asking on the Pernicious Anaemia Society forum.

[Janeylou69 in reply to helvella]

Yes they tested intrinsic factor antibodies but it was 2018 I can't remember what the results were, but I had a colonscopy and endoscopy and they never mentioned pernicious anemia so I asked the doctor a while after that and he said I didn't have it so I was confused but I feel absolutely tired and I'm concerned because I was losing weight before when I first found out I needed b12 injections and now I'm losing weight again ,I'm struggling with all of this thanks for your help .

[Marz in reply to Janeylou69]

Are you taking a GOOD B Complex to keep all the B's in balance ? How are your iron levels ' if low then it could be causing the fatigue ...

[Janeylou69 in reply to Marz]

My iron is low ,my vitamin d was also low ,but I have trouble taking the iron tablets coz I have to take vit d 4 hours after taking my thyroid tablets then I try taking 1 iron tablet about 3 or 4 o'clock, it's all just a nightmare x

[Marz in reply to Janeylou69]

How much VitD are you taking ? Dose is linked to test results. Do you have your result? Also Magnesium and VitK2-MK7 are important co-factors - do you take these.

How low was your iron ? Could you ask for a transfusion if very low ?

[Janeylou69 in reply to Marz]

I think it's 3000 a day vit d ,no I don't know if they tested magnesium ,vitk2 ,and mk7 ,I don't take these ,my folate was low and the gave me 28 tabs to take with I've taken the course but I'm hoping it's something simple that's making me so weak and extremely tired x

[Marz in reply to Janeylou69]

It is often advised here on the Forum to take Magnesium when taking VitD. Taking VitD improves the uptake of calcium from food and K2-MK7 directs calcium away from arteries and soft tissue into bones abd teeth. What was your VitD result ?

You should continue with a good B Complex now that you have finished the FA prescribed by the GP. Thorne Research B Complex contains Folate rather than Folic Acid which you may absorb more effectively. B12 needs Folate/Folic acid/B9 as they work together in the body in an important way.

Is your diet good ? Are you taking any other meds that could be interfering with nutrient absorption ?

Low Iron - B12 - Folate - VitD WILL make you feel weak and tired .....

[Janeylou69 in reply to Marz]

What is a good b complex to take x

[Marz in reply to Janeylou69]

Thorne RESEARCH Basic B Complex - on-line ....

[Cornwaller]

Hi, some people need much more frequent b12 shots than three monthly see b12d.org or PA forums. It is not known why as the bloods don't show deficiency. It is hypothesised that there are sites and or cells which remain deficient despite the elevated level in the blood and these deficiencies result in sub optimal physiological processes and the symptoms described. Unfortunately the people in white coats generally don't know this. More frequent shots have been found to overcome the problem, as you describe the initial period after a treatment is ok.

So the solution is to trial more frequent shots or possibly try high doses sublingual; however, the former is more likely to be successful. The PA forums give more details on this. You could try your GP but you may have to consider other options that give you more control.

[shaws Administrator in reply to Cornwaller]

The present GP told me I can have as many B12 injections I want, so I now have a monthly B12 injection instead of 3 monthly.

[shaws Administrator]

Have you been diagnossed with Pernicious Anaemia?

If you do have this condition you need regular B12 injections - which are usually every 3 months.

I have P.A. too but GP told me I can have as many B12 injections I feel I need, so I now get a monthly B12 injection.

My Mother had Pernicious Anaemia but in later life a GP told her she needed no more injections as her 'blood test was fine'.

That decision by the GP caused my mother to develop stomach cancer that caused her demise.

[Janeylou69 in reply to shaws]

I'm so sorry that happened, I will try and convince my doctors to give me more injections ,i don't think I have PA they couldn't find it but b12 is what has made my life a misery ,it's just awful x

[shaws Administrator in reply to Janeylou69]

Maybe just say "I would like to trial an increase in dose, just to see if my symptoms resolve."

[Janeylou69 in reply to shaws]

Yes that would be a good idea ,just to see if they will let me try it x

[Marz]

Have been reading through your post of two months ago when SlowDragon suggested you try being gluten free. Am wondering if you made any progress ?

I can sympathise with your gut issues as I had Gut TB - then Crohns with lots of surgery and complications. Both have a LOW VitD component. I have Hashimotos and a B12 issue caused by surgery . I am gluten sensitive but went Gluten Free for 6 years to help with gut healing. I am almost 76 and feeling well. I mostly take care of myself .... so best to read here and try to work out what's best for you.🌞

Apologies for the underlining ! New gizmo !

[Janeylou69 in reply to Marz]

Hi marz sorry for the late reply ,I've tried gluten free but not sure if it's made a difference ,I'm still extremely tired all the time ,I'm weak ,no energy whatsoever ,I could sleep all day ,I'm very worried ,the doctors are doing more blood tests this week to see how my iron is and my vitamins and my thyroid but he never tests b12 coz I have 3 monthly injections it's really depressing not knowing what is wrong and thinking the worst all the time .

[Marz in reply to Janeylou69]

Make sure you get copies of your iron results etc and post here in a new post 🌻

[Janeylou69 in reply to Marz]

Okie dokie will do .thanks marz

[Janeylou69 in reply to Marz]

Hi Marz do you know if the calprotectin test picks up inflammation from the pancreas thanks .

[Marz in reply to Janeylou69]

Am afraid I do not know the answer - thought it was just the gut ...

calprotectin.co.uk/about-ca...

[Janeylou69 in reply to Marz]

OK thanks marz ,I'm just trying to find answers as to what's wrong with me ,it seems after i eat my stomach starts churning ,whether it's to do with my hypothyroid I don't know ,it just seems that just before I found out I was hypothyroid my health has deteriorated and I want to at least get in a good place ,it's depressing .thanks for your help .

[Marz in reply to Janeylou69]

Could be due to low stomach acid which can slow down digestion .....

[Janeylou69 in reply to Marz]

Yes it could be ,I don't know it's all so confusing ,my results from my last tsh say it's ok but I've never felt good since 2018 .thanks for your reply .

[Marz in reply to Janeylou69]

Testing only the TSH is inadequate - you need FT4 & FT3 ....

[Janeylou69 in reply to Marz]

Hi that's the thing they only test tsh ,my doctor was saying it's the labs that only test the tsh ,they won't test ft4 and ft3 ,I think it's just stupid that they won't test them when it plays a big part in the thyroid thanks Mars.

[Marz in reply to Janeylou69]

Go on-line - Monitor My Health - home testing of TSH T4 T3 for £27

[Janeylou69 in reply to Marz]

I will look into that ,it's worth getting it done thanks marz .

[Marz in reply to Janeylou69]

No time like the present ! Taking control of your health is empowering !