B12 deficiency

[Shenka]

Hi. Have been taking levothyroxine for some time for autoimmune thyroiditis. Over past few years have suffered with ataxia. Total instability when walking. Initially very random but deteriorating. Fractured wrist then shoulder then foot. Finally referred to a falls clinic and first diagnosis is low B12 . Started injections yesterday and my back is aching. Felt so tired also. Is this common?

[greygoose]

I'm afraid I can't tell you anything about B12 injections, I've never had one, but I do know about ataxia. I found CBD oil brilliant for that. My ataxia went away completely when I was taking it. Now I'm not taking it, for various reasons, and the ataxia is back, even though I take a lot of B12/B vits.

[helvella Administrator Thyroid UK]

Our friends over in the Pernicious Anaemia Society forum are the experts regarding B12 injections. (We have quite an overlap of membership as well!) So I suggest you post over there.

healthunlocked.com/pasoc

[SlowDragon Administrator]

You will presumably be having several B12 injections (known as loading injections) and then ongoing injections every 2 or 3 months

What was B12 result and range BEFORE starting B12

Essential to also test folate, vitamin D and ferritin

What other vitamin supplements are you taking

[SlowDragon Administrator]

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help maintain B12 levels between injections

add a separate vitamin B Complex  a week after first B12 injection

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

Igennus Vitamin B complex. Nice small tablets. Full dose is 2 tablets per day. Most people are fine with just single tablet

igennus.com/products/super-...

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

[Sparklingsunshine]

Neurological problems are common when low in B12 and if you are low in B12 then chances are your folate will also be low. It depends on the cause of the deficiency, whether its autoimmune, aka Pernicious Anaemia, due to diet, especially if vegetarian or vegan or if you have a malabsorption issue in your digestive system. If its PA then you cant absorb enough B12 from diet or tablets so lifelong jabs are required.

Being low in B12 can make you feel really unwell and fatigue is common. And if left untreated can cause permanent neurological problems. So its important to make sure you get regular jabs. I get jabs every 2 months. I also use a sublingual dropper under my tongue every day.

[Cornwaller]

On the PAS forum it is often reported that people initially feel worse on b12 shots and then improvements follow some times a few weeks later. It is sometimes referred to as reversing out as the b12 deficiency damage starts to repair which puts a strain on the body.

[am111]

your back ache and feeling tired is your neurons healing. Continue with the treatment. Ataxia is common in B12 deficiency. Also, loading doses may be insufficient and you may need more injections (like once-a-month) for a few months after the loading doses before you go to less frequent injections. You can also do daily B12 tablets. 1000-2000mcg cyanocobalamin has been found to be effective in clinical trials.

[CoeliacMum1]

Hi

I have pernicious anaemia and what you describe can be symptoms of B12 deficiency, not sure why you should feel the symptoms after injections maybe see how you go give body time to adjust but mention to your GP… I assume they’ve given you a loading doses over a week or so and now on a 12wk injections schedule, although sometimes they’re given more frequently if required.

I haven’t been on any other forums regarding the topic my personal experience is I have sometimes a stinging or pressure like feeling when injections given occasionally headache after but I’ve never correlated my musculoskeletal problems to that so that’s interesting.

I had very complicated problems, as I had ataxia but also a disc bulge hitting spinal cord along with extremely high levels of antibodies for coeliacs disease, which was giving me neurological problems too not digestive… few weeks in then found pernicious anaemia… so what caused my problem is difficult to say, but after 18months of injections and getting B12 levels in 700s my burning tingling sensation disappeared …although I wasn’t positive for pernicious anaemia antibodies but I am now down as have pernicious anaemia, apparently some people don’t test positive….if I miss an injection my levels sink with 5/6 months to deficient - I know this as they never recalled me back after initial loading dose saying that will do 🤦🏻‍♀️

Hope you find some answers as I’m very well aware how debilitating bad backs are.

[pinkfluffyclouds]

Also get bone density test done and vit d level and calcium check for osteoporosis due to these fractures you've had. I did not know I had parathyroid problems and osteo until had these tests done found out after I fractured my foot just in case you need treatment for osteoporosis.