Vitamin b12 deficiency

[Bluebellsareblue]

Hi I read that a lot of thyroid disease patients also suffer with vitamin b12 deficiency. I was just wondering what symptoms people had? I have looked online and I have some of the symptoms but a lot of them are the same as thyroid disease symptoms.

[SeasideSusie Remembering]

Bluebellsareblue

There are quite a few overlaps of thyroid symptoms and low nutrient symptoms.

Have you had B12 tested?

And Vit D, Folate, Ferritin?

[Bluebellsareblue in reply to SeasideSusie]

Yes I had them tested but not had my results back yet. GP said they would phone if there was a problem and if I don't hear anything then all ok.

[SeasideSusie Remembering in reply to Bluebellsareblue]

Just ring the surgery, ask the receptionist for a print out of your results. In the UK we are legally entitled to them. Once you have the results then post them on the forum and include the reference and units of measurement.

[Bluebellsareblue in reply to SeasideSusie]

Ok thank you I will, do you know how long it takes for results to come back?

[SeasideSusie Remembering in reply to Bluebellsareblue]

I've only had B12 done once, when I was having thyroid tests. I think they were back the next day. A GP has to see them before they can be released to the patient so give it a couple of days before you ring.

[redhead41 in reply to Bluebellsareblue]

Never assume everything is normal just because the surgery has not rung with your results. You don't know if the sample was lost, if the results even got back to the doctor and then there is a big difference between normal and optimal. You have to take charge yourself and get a copy of the results everytime.

[SlowDragon Administrator]

Make sure you get results and ranges

Within range is frequently not optimal

Are you currently taking any vitamin supplements

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Folate and ferritin at least half way through range

Vitamin D at least around 80nmol minimum

[Lhatese]

I think everyone is B12 and D deficient. Low energy malaise all the symptoms of not having oxygen in the blood! Raw Liver. End of story. Yeah, not what you wanna hear.

[Jbrooke in reply to Lhatese]

I thought liver was more about iron. So B vitamins come from eating liver too?

[SeasideSusie Remembering in reply to Jbrooke]

Jbrooke

Liver is classed as a superfood, choc full of vitamins and minerals:

B vits - B2, B9, B12

Vit A - high in Vit A so we have to be careful not to eat more than 200g liver per week

Iron, Copper and Choline

Nice article about it here: healthline.com/nutrition/wh...

[ICE187 in reply to Lhatese]

Yeah raw liver, not happening lol. I can't handle the taste or texture of liver. I take desiccated liver supplements.

[McPammy]

I had low B12 and ferritin as well as living with Hashimotos. I was prescribed B12 injections. I now have regular 3 month injections of B12. And I get Ferris Fumerate 210mcg on repeat prescription. I’m a vegetarian and as I don’t eat meat( I do eat fish a few times a week) I don’t get enough B12 or ferritin in my diet.

[Danaaa]

Do you feel good after the b12 injections? What symptoms do they not help with please? Thanks

[Doggy1903]

yes there seems to be link of feeling washed out and low energy.It seems familial as I have this combination, my mother and her twin sister the same. My big bro also low thyroid and our grandfather.

[Jbrooke]

Yes, I agree! The two do overlap in symptoms. In the past, I tested low in B12 too, though I didn’t realize it. My mother and my grandma tested low also, and I think they noticed the biggest difference after supplements. If you do test low, my advice would be to definitely do something about it. Many thyroid patients have gut issues too, which interferes with absorption of vitamins from food, so supplements are necessary. I think healthy people can eat a good diet and be fine. I know prior to a thyroid problem, I never needed vitamins, according to my bloodwork.

[DelicateInput]

Hi - As others have said, the B12 range for Vit B12 is far too wide and this seems to be particular to the NHS. I think the NHS is really for critical illness when you are about to drop dead and anything within its very wide range of 200 to 900 is not imminently dangerous but could give you chronic symptoms which you might be able to put up with but cannot function that well. Added to that, the NHS always seems to want to wait to see if you get better by some miracle. With these chronic conditions, there is plenty of warning time and it seems to only deal with acute illness. I have a number of chronic conditions for which I have been refused treatment.

B12 deficiency is usually caused by another auto immune condition where antibodies attack the parietal cells in the stomach. The parietal cells produce the intrinsic factor which is needed to absorb Vit B12.

My readings have been at the low end (230 and sometimes lower of a 200/900 range) for at least 20 years. I have never noticed any particular symptoms. I have recently had severe memory and cognition problems. These have been helped by oestrogen in HRT and Dong Quai (a Chinese herb), levothyroxine which I started this year and amazingly I noticed a difference when I took Vit B12 tablets. I think most people say they feel tired but that has not really been an issue for me until lockdown where I think other factors are at play. I did feel more perked up though with the Vit B12 tablets. However, I notice the tablets from Holland & Barratt contain yeast so I have stopped taking them.

A friend has pernicious anaemia running in the family and she said the only symptom was her arms going wobbly. She has always had an enormous amount of energy - known by friends as hyper active. She has injections. The hope is that if you have low Vit B12 that it can be treated with tablets. I do not know at what point you need injections, presumably when the parietal cells are all destroyed. You can get a blood test for antibodies to the parietal cells - this is the only antibody I have even though I have RA and now hypothyroidism.

[Cornwaller]

Symptoms overlap and are also highly individual- a couple which seem to be b12 only are a sore, red or swollen tongue, pale parlour or slightly jaundice like ie yellowish hue to the face, a blood test for MCV is also sensitive to b12 deficiency - top of range or over is indicative. The b12d.org sight has a great symptom checker and more details. Beware b12 blood tests they are not particularly reliable and GPs are not up to date on their interpretation . Less than 200 is deficiency and 200 - 350/400 maybe deficiency and above this is unlikely to be deficiency.

Hope this helps.

BMA and NICE sites have up to date UK protocols which are arguably less strict than in other jurisdictions.

[carolpartyqueen in reply to Cornwaller]

I had tests back recently. I’ve felt very unwell and was diagnosed with hyperparathyroid.My B12. 57 (25.1-165.00)

Folate 420 (340-1475.7)

Vit D. 62 (50-200)

They all look very low.

[Darty3 in reply to carolpartyqueen]

I had hyperparathyroid and was miserable till the lump was removed. The joy of life returned, BP came down, walked faster, less stopped etcetcThrough out calcium was normal or only slightly raised. Modern medicine is cruel going on ranges not symptoms. Sorted by my asking for a second opinion from Hammersmith Hospital, since all my endos refused to operate.

Good luck

[Cornwaller]

Not sure what the units are, In my reply they were pg/ml. All three are at or below the lower 25% of the range and are likely sub optimal and might possibly be deficient for you. For b12 I would suggest you use a symptom checker to help interpretation of your results and look at sites such as B12d.org.

Slow dragon is really helpful and better informed about vitamins and might be able to give more detailed advice.

[Litatamon]

Symptoms are very individual, and can depend on how deficient one has become, but do note they are body wide.

Some are straightforward like brain fog and fatigue but can be bizarre as a flickering eyelid, feeling like your tongue doesn't fit in your mouth, and cracking around the corners of your mouth.

Gait change was my first and strongest symptom. I was an avid walker. And suddenly my walking was both awkward & uneasy. Like my body wasn't connected. One can also start walking like you're drunk. It is called proprioception - inability to properly feel yourself in the space around you. It can come off as clumsy. Foot drop was also a big sign - which can lead to falls.

I had over thirty symptoms (also had low vitamin d too 7.6 ng/l). They included:

*double vision

*extreme light sensitivity

*memory issues

*word-finding issues including saying one word while thinking of another

*slurring of words

*inability to edit written words

*delusions (I had one episode but can be often for many. Some sufferers note activities like putting their phone in their fridge or pulling up to a fast food restaurant thinking they were at the bank. So cognitive issues can be strong.)

*apathy

*agitation

*severe nerve pain (b12 is needed to coat our nerves)

*ear pain

*noise sensitivity

*severe headaches almost daily (easy for me to see as I previously was very blessed rarely to have one.)

*tongue oversized and cracked corners of mouth as previously mentioned

*feeling head is too heavy for neck

*Shoulder pain to the point could not pick up things on one side

*heart issues - palpitations (completely disappeared with b12 shots)

*sleeplessness

*poor exercise recovery (if I could even exercise - did regularly before this period)

*intense fatigue

*yellowing of skin

*numbness not feeling in legs especially - could put a sharp object there and feel nothing

*could not feel something burning me on the stove, as is normal

*numbness and tingling in hands. legs and feet

*Lack of flexibility - knees felt like concrete

*could hardly raise from a sitting position - used to be able to bounce up

*black marks just below toes

*foot drop

*falls

I know this all sounds frightening, and it was but over 80% of my symptoms disappeared like *poof - gone* after loading doses of b12 shots. And since I do have thyroid issues that are just now be taken care of, the fact that many on this list disappeared shows that they were not overlapping issues.

However some symptoms do/can get worse for a short time at first - including getting new symptoms - as the body wakes up. And some symptoms can take years. I now suddenly react to touching hot items & I am three years out from diagnosis/loading doses.

I do have remaining symptoms that I wonder if they will ever be resolved. But hopeful.

I had been caregiving for years. So I simply thought it all was exhaustion & mourning at first.

But then I had a series of falls, when I used to skip down stairs. That led me to try to find the issue at hand. Which took years unfortunately & brought more symptoms and suffering. Know that doctors know very little about pernicious anemia/b12 deficiency and can make patients worse off with poor management.

Here is a terrific link -

stichtingb12tekort.nl/engli...

All the best to you.

[Snooperkitty21 in reply to Litatamon]

Wow great post, thank you for this! I have a lot of these symptoms, especially light and sound sensitivity, severe memory issues and now derealization.What was your B12 level when you found out you had a deficiency? Mine was 175 pmol. My mom, husband and daughter all have B12 levels around mine and they feel well.

I’ve been on weekly B12 shots for 2 years with no symptom resolution. I’m wondering if you found those few symptoms I listed above to be from another deficiency too?

[Litatamon in reply to Snooperkitty21]

Hi Snooperkitty21,

I was 103 pmol/l when discovered. But I am not vegan or vegetarian, so there was clarity. (For people reading a vegan or vegetarian can have absorption issues/pernicious anemia as well. But they can just have low b12 due to diet - two very different issues).

Did you have loading doses? Variations include six shots in a two week period.

I would think that a lack of some symptom resolution is a sign that it is not all or not b12 deficiency/pernicious anemia. But I am just talking out loud. Your levels are low. Did you have any gait changes and/or foot drops - this is a common sign. Thinking back I even had foot drops while biking.

But do know not everything disappears and many do still suffer BUT there is a lot of almost instant changes as well - while some symptoms might get worse. It is rarely a linear recovery process. My sister has it as well. She was around 70 pmol/l and has had much smaller improvements. And did not have as varied symptoms as me. I do think hers was misdiagnosed for too long of a period. I also self-injected from almost day one and went every other day for at least my first year. Followed the NICE guidelines of every other day until no marked improvement if one has neurological symptoms - which I did. Followed this even though I am not British.

Snooperkitty21, I don't want to say a lot on your symptoms but I do want to say that I am sorry you are suffering & I hope it gets figured out soon. Might be a good idea to have a full vitamin and mineral testing - folate deficiency can overlap. And ask for a neurological scan as well, if one has not been performed.

[Capri2020]

Careful with the organ meats..youtu.be/iix5vSYu8Gg(Not working as expected?)