B12 stored in Liver - Is this bad? Advice neede... - Thyroid UK

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B12 stored in Liver - Is this bad? Advice needed please

Jillycee
Jillycee

Hi, after having my last tests done with Blue Horizons, I visited my doctor with several concerns e.g, aches in different joints in hands, pains in hip and lower back, sudden appearance of ulcers in mouth which then disappear the next day, suddenly being allergic to fried/poached eggs, etc etc. I seem to have really different things happening out of nowhere and explained to the doctor that I can't believe I should be feeling like this at the age of 44!! Although mentally I feel so much better, almost back to my normal self, physically I can feel great one day and awful the next. I try to go out walking or playing golf to get plenty of exercise, but if I feel energetic one day and do exercise, I seem to pay for it for the next couple of days by feeling exhausted!!!! Is this just a normal thing to expect with Hashimotos?? The doctor didn't really have any answers, but she did say that as my B12 was high, I need to be aware that this is stored in my liver for up to 5 years. I left the surgery concerned about carrying on with my B12, but then realised that I didn't ask why this was a bad thing!!! Any advise would be greatly appreciated, as I don't want to stop taking the B12 as I have felt so good, but don't want to carry on if it is bad for my liver.

30 Replies
oldestnewest

Sorry, I should have said that my B12 level is 821 and I currently take Methylcobalamin 1000mcg maintenance dose along with B complex.

That result sounds fine. If you make and metabolise B12 normally, it takes several years to exhaust the stores in your liver. If you don't, it drops like a stone and can cause permanent nerve damage. The blood test doesn't show what is actually avaiable for the body to use (the MMA test is better). I'd ignore them and go on with what you are doing. As far as I know, high B12 doesn't cause liver disease, but liver disease can cause high B12 (and it can also be a sign of certain cancers). But your B12 isn't particularly high. If both liver and kidneys are working well, any true excess B12 just leaves the body in the urine.

Thanks Angel_of_the_North, that's really helpful :)

Hi , I can't offer any advice regarding the B 12 . I take that one myself and my recent Blue Horizon test was 474 . I am gluten and recently dairy free. However I have exactly the same symptoms as you . It very frustrating.

Jillycee
Jillycee in reply to TJc64

It is so frustrating isn't it!! Seem to take 1 step forward and 3 steps back!! Really pleased that I feel so much better mentally, but seems to end up taking more of a toll physically!!!!

While Vitamin B12 is water soluble some is stored in the liver. Doctors get worried if you have a high vitamin B12 level as they don't understand the tests and don't like people taking supplements full stop. They are taught taking supplements is a waste of money and in some cases dangerous as they are not taught about nutrition and exercise at medical school.

A vitamin B12 test that is normally done is a serum or blood test. This means if you take a supplement it just shows that you have taken one in your blood stream. It doesn't show whether the level of vitamin B12 in your cells or whether your body can utilise it.

The NICE guidelines state a serum or blood vitamin B12 test is useless if you are supplementing vitamin B12. Instead you need a full blood count or a reticulocyte test. Some people even state that an active B12 test is also a good one to have. However members of the PA society point that there are flaws in each of these tests.

So if you supplement with Vitamin B12 and are deficient then the cheaper serum or blood test won't work for you.

In regards to your pains you need to have for a start your vitamin D level, iron - both haemoglobin and ferritin levels - , and folate level looked at as well as your thyroid hormones with a full blood count.

If these are all optimal and it is very likely something isn't then you need to be looked at for other autoimmune diseases.

Jillycee
Jillycee in reply to bluebug

Thanks bluebug for all of that info. Does this mean that it is not worth me having the Blue Horizon tests done to check my B12 levels as theres is a blood test. Would you say that it is worth continuing the B12? I have attached a copy of my most recent tests from Blue Horizons

bluebug
bluebug in reply to Jillycee

Yes once you start supplementing with B12 then checking your levels with a serum or blood vitamin B12 alone won't show you anything.

I am unable to answer you on whether you should continue supplementing with B12 as I have no idea of what your signs and symptoms were before supplementing. I suggest you go over to the Pernicious Anaemia society on healthunlocked then research and ask vitamin B12 questions there, as member of that forum will be more knowledgeable.

Jillycee
Jillycee in reply to bluebug

Ok thank you bluebug for your help

Jillycee
Jillycee in reply to bluebug

My latest results

healthunlocked.com/thyroidu...

Sounds to me like you have low T3. Have you had your FT3 tested recently?

Jillycee
Jillycee in reply to greygoose

Hi greygoose, I had my T3 tested 2 months ago with BH, it was 4.22 (3.1-6.8) I generally test everything every 6 months with BH as my gp will only test TSH

greygoose
greygoose in reply to Jillycee

Yes, well, that's too low. Certainly too low for exercising. Most people need it up the top of the range to feel well.

Jillycee
Jillycee in reply to greygoose

Thanks greygoose. I'm sure I must have been told before, but how do I increase my T3?? Sorry if it's an obvious question

greygoose
greygoose in reply to Jillycee

Well, if you can't convert T4 to T3, then you have to take T3.

Jillycee
Jillycee in reply to greygoose

Ok thank you. I have just read a few posts about T3 and presume the first point would be to ask my GP, but I'm guessing the answer would be no:) and then next on the list would be to post to ask where people buy T3 from and ask them to PM me?? Are there any side effects of taking T3? thanks again greygoose

greygoose
greygoose in reply to Jillycee

That would be correct, yes. :)

If used correctly, hormones shouldn't have side-effects. But some people react to fillers.

Jillycee
Jillycee in reply to greygoose

Excellent, thanks again greygoose

greygoose
greygoose in reply to Jillycee

You're welcome. :)

Some people respond to high levels of B12 in their blood by shutting down the mechanism that allows it to pass into the cells that use it - leading to a functional B12 deficiency.

Personally I wouldn't advice anyone to supplement with the doses of B12 you are taking unless they know that they have an absorption problem

this is from the pinned posts in the PAS forum -

b12researchgroup.wordpress....

Jillycee
Jillycee in reply to Gambit62

Hi Gambit62, many thanks for your response. My GP hasn't paid any interest in any of my symptoms since I was given Levothyroxine and has always said that none of my symptoms are related to my thyroid. She was very keen to give me an anti depressing or HRT, which I refused both. She has reluctantly given me an increase of Levo of the last 2 years and I am now on 100mcg. I have had so many different symptoms over the last couple of years such as not being able to concentrate on anything, feeling anxious etc etc and recently joint/back pain, TMJ diagnosis, ulcers in mouth out of the blue and loads more.

My B12 was 288 (190-900) and I felt dreadful but because I was in range, the GP didn't suggest B12 supplementing. I started taking the B12 supplement along with B complex and started to feel loads better - more energy, felt like actually doing something for the first time in ages and could concentrate more.

I've had a couple of tests since then and rose to 580 and then 821 and still feel better (apart from joint pain etc). I'm reluctant to stop it as I don't want to go back to feeling how I was feeling, however really don't want to do any damage to my body!!! It's so hard to know what to do!!!

Gambit62
Gambit62 in reply to Jillycee

if you are feeling better than you were then you are probably okay - its not that high levels in serum will cause problems its that they can cause problems. However, if your levels are rising like that on an oral dose - even one as high as you have - it does imply that your absorption isn't totally impaired so it may be that you don't actually need that high a dose.

Hidden
Hidden

Jilly, it takes good stomach acid and intrinsic factor to MAKE b12. This is a problem for hypos who often have very low stomach acid. Start taking Betaine HCL or unfiltered vinegar and also look into proteolytic enzymes and digestive enzymes. This is all about your gut.

Jillycee
Jillycee in reply to Hidden

Thanks Heloiss24 , it is so complex isn't it!!

Hidden
Hidden in reply to Jillycee

Yes, Jilly, partly because the body has so many intricate functions that you don't have to think about UNTIL SOMETHING GOES WRONG. But it is finely tuned with stop/gap measures, plan B measures, work together activities and fill in missing parts but in the end it's all about survival. People over in the Pernicious Anemia community can probably explain this far better than I but many nutrients are stored first and then circulate as needed but sometimes it keeps circulating and never captured by receptors or kept in storage and then you have another problem. Very similar to hormone problems.

The bottom line is that your body is highly intelligent and ALWAYS has a good reason for whatever it does. That's a quote from John Bergman and if you watch his videos on You Tube, he is a master teacher of anatomy and body function. He seems to know EVERYTHING about the human body.

You should watch his video on the Adrenal and Thyroid healing. He even makes it simple, kind of, lol.

Hidden
Hidden

Apologies if you are already aware of this, but mouth ulcers occur with coeliac disease - you may have already tried gluten-free diet for a few months, but if you haven't, it's worth a try. Good luck with everything!

Jillycee
Jillycee in reply to Hidden

Thanks Colliej. No I wasn't aware that you could get mouth ulcers with coeliac disease. I've been 100% gluten free since march last year, so I presume it couldn't be that??

Hidden
Hidden in reply to Jillycee

It's great that you are gluten free - weird that you are getting these sporadic symptoms :-( Possibly some cross-reactivity going on. In desperation I once paid for a gluten & a cross-reactivity test. Cheaper to do an exclusion diet, of course. I hope you find the solution soon, and thank you for your reply. I'm always relieved when people with autoimmune problems are aware of the possible gluten connection.

Hidden
Hidden

Some administrators recommend a certain form of B12 as cheaper additives have to be broken down in the liver. As far as information on vitamin B12 on us websites, and from global healing which sells drops which dissolve on your tongue, B 12 along with other b vitamins are excreted daily. The product ie one bottle should last a year as you only need one drop a day.

I had to pay an international postage charge and a customs duty of £16. 41 but if you think of the price for a haircut or clothing, it's worth it. Global healing has articles on B12.

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