Low B12: Please can you lovely people let me know... - Thyroid UK

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Low B12

Joant24 profile image
49 Replies

Please can you lovely people let me know which B12 and Vit B complex are the best bearing in mind I’m vegetarian and dairy free? My levels are miserable!

Thank you 🥰

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Joant24 profile image
Joant24
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49 Replies
Joant24 profile image
Joant24

Also my ferritin is looking ropey but I’ve got that one covered hopefully 🤞

SlowDragon profile image
SlowDragonAdministrator in reply to Joant24

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Stop iron supplements 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

FallingInReverse profile image
FallingInReverse

Check previous post here!

healthunlocked.com/thyroidu...

hellybaybee profile image
hellybaybee

I tend to self-administer methylcoblamin injections 2 weekly - monthly

Obsdian profile image
Obsdian

I don't know about "best" but I take Boots brand B12 and it has increased my levels nicely. It's also vegan.

Espeegee profile image
Espeegee

My sister was vegetarian and eventually developed pernicious anaemia and had to have injections. You could try unfortified nutritional yeast, that's rich in B12. Comes in a flake form and some say it tastes quite cheesy.

helvella profile image
helvellaAdministratorThyroid UK in reply to Espeegee

I think you'll find unfortified nutritional yeast has no B12.

Since nutritional yeast is often used by vegans who may be interested in supplementing their diets with vitamin B12, there has been confusion about the source of the B12 in nutritional yeast. Yeast cannot produce B12, which is naturally produced only by some bacteria. Some brands of nutritional yeast, though not all, are fortified with vitamin B12. When it is fortified, the vitamin B12 (commonly cyanocobalamin) is produced separately and then added to the yeast.

en.wikipedia.org/wiki/Nutri...

Personally, I can see no point in getting B12 other than from a B12 supplement - where you can choose the dose, the form, the frequency, etc., independently of anything else.

Further, absorption by passive diffusion - which might be important to some - is not considered significant in lower doses like 50 micrograms (and that is typically a whole packet) but requires 500 to 1000 microgram doses.

Espeegee profile image
Espeegee in reply to helvella

Thanks for that, I have a nice big tub of it lol but the bonus is that my hens eat it. Can't remember where I read that it was a good source of B12. I know what I bought was fortified so maybe there's a bit.

SlowDragon profile image
SlowDragonAdministrator

How low are B12 and folate

Low B12 symptoms

b12deficiency.info/signs-an...

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

NICE guidelines on B12 and testing

healthunlocked.com/redirect...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 at least few times a week if not daily

Highly effective B12 drops by Nature Provides

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

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

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) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Joant24 profile image
Joant24 in reply to SlowDragon

thanks for reply, here’s my latest test I’m improving my vit D and my folate is also rising .

I’ve also done a repeat saliva cortisol test to see where that and my DHEA is going.

Good
Rosills1 profile image
Rosills1 in reply to Joant24

What are your symptoms?Grassroots health might say that your vit D could be higher.

Do you take Magnesium, omega 3, vit k etc.?

Joant24 profile image
Joant24 in reply to Rosills1

Thyroid Doc said same regarding Vit D on a previous appointment so have doubled up on this and it’s working nicely. It also has the recommended Vit K

Only take folate and Vit D, DHEA, thyroxine and T3.

Still very tired and it takes a lot to motivate me. As a pescatarian and being dairy free I know I should be supplementing with B12 etc but I do it for a while and then I forget blah blah (I’m sure there’s a lot of you out there doing much the same). But I’ve just read the links on low B12 and it’s really hit home the importance’s of supplementing and the possible outcomes of not bothering. About to order some toot sweet!

My afternoon /evening cortisol was on the low side so that’s not helping. Just done a follow up one to see where I’m at now and waiting for the results.

Whoo that was a longer reply than I meant 😂🥰

Rosills1 profile image
Rosills1

You may wish to look at B12d.org

CoeliacMum1 profile image
CoeliacMum1

If your GP has tested this they should offer you advice on this or refer you to a dietitian, even Pharmacist can advise on supplements and what strength to look at.

If deficient and it’s due to dietary restrictions then they may advise you to supplement and see if things improve and then next steps if things don’t.

B12 and folate testing

B12 levels should be looked at first before taking supplements of folic acid (synthetic form we need to convert) or methyfolate (easier to absorb) as taking folate supplements can mask a B12 deficiency… do get B12 checked first when looking in these areas if doing theses tests privately as they may not mention this.

Information is on NHS website explaining fuller about this.

Joant24 profile image
Joant24 in reply to CoeliacMum1

GP useless. Thyroid dr much better and talked me through folate. Also I was on long term antibiotics ages back which pushed my folate right down, luckily we caught it and it’s slowly been recovering.

Capan24 profile image
Capan24

I am vegetarian and take Vitamin B12 (Methylcobalamin). This is what I researched about it.

Methylcobalamin is often considered better absorbed because it's a biologically active form of vitamin B12. It bypasses the need for conversion in the body, making it more readily available for cellular use compared to other forms like cyanocobalamin.

I don't take biotin. Biotin is found in many vegetarian foods such as nuts, seeds, whole grains, and vegetables. So I feel I am getting adequate by attend because I eat many of these foods.

am111 profile image
am111

I would suggest a monthly shot. If you prefer orals, you can take 1000mcg/day. I found cyanocobalamin works better, but if you don't have any absorption issues, any form will work.

If you don't have any absorption issues, you can take lower amounts (15-50mcg) tablets 2-3 times a day. As others have pointed out, for people with PA, this is insufficient but 1% is absorbed by all by passive absorption, hence 1000mcg giving about 10mcg/day to the body is sufficient. However, even here, it is better to take a few shots in the beginning to boost up the levels initially before switching to orals which are generally recommended only for maintenance, as going directly for orals can take several months to really kick-in and years to build the reserves fully.

Joant24 profile image
Joant24 in reply to am111

Interesting info, I’ll look at the shots as you say it’s a good kick start.

When I took B12 a couple of years ago my levels went over the range so I doubt whether I’ve an absorption problem.

am111 profile image
am111 in reply to Joant24

How much oral did you take? Our food has about 2-10mcg/day and normal people are able to absorb about 2-5mcg from this (max 2mcg at a time), which is sufficient (although reserves build up over time to about 2.5-5mg in the liver, which can last for several years for normal people!). Apart from this, about 1% is absorbed by passive absorption by all, so anything above 500mcg/day gives sufficient B12 to the body to all, including PA patients. If you were taking the low dose tablets and still your levels were high, then you don't have an absorption problem, but if you were taking high dose ones, then it is a different matter.

I must also warn you that your blood B12 levels while on high dose tablets or injections will always be high. However, it does not mean that your reserves are high enough and you can stop the supplementation, as the blood B12 levels always rise temporarily (couple of weeks for orals to several months for injections) on such supplementation.

helvella profile image
helvellaAdministratorThyroid UK in reply to am111

There are many on the Pernicious Anaemia Society forum who would say they cannot survive on oral B12 - whichever form, whatever the dose.

am111 profile image
am111 in reply to helvella

Yes, for those with absorption problem, orals may not work very well. However, studies have been done on oral cyanocobalamin for maintenance and they say that 1000-2000mcg/day is sufficient even for PA patients. At least MMA and homocysteine remained normal. How well the neurological damage is healed we don't know, but it is logical that if these are normalised, then the body cells are getting sufficient amounts.

If we start from scratch, then it takes 2-4 months for these metabolites to normalise, so it is certainly not a good idea to start with orals for those with neurological deficit or severe deficiency.

Another point is that I haven't really seen proper studies with other forms of oral B12 and my experience with oral methyl was not good while with oral cyano, it kicked in strongly after about 2 months or so, which is close to what the clinical trials also suggest.

In any case, I do agree with you that an injection even for maintenance is a better idea than orals for probably everyone, although people without any absorption problem may prefer orals.

bookish profile image
bookish in reply to am111

I agree with helvella, not all with any form of malabsorption, not only PA, can absorb sufficient from oral/passive routes. Might just about be enough to slow down the decline but won't stop progression nor be enough to heal. I have been on high dose oral for many years, increasing to very, very high, but have just started injections and the difference in action is massive. B12 metabolism is far more complex than fully understood.

am111 profile image
am111 in reply to bookish

please see my reply to helvella. What form and what type of oral were you taking and what schedule are you following for the injections? Just curious. I fully agree that B12 metabolism is very poorly understood, so trying to understand.

bookish profile image
bookish in reply to am111

Hi, I also am trying to understand and would not presume to have all the answers. I have some doubts about your statement re normalisation of MMA and homocysteine indicating cellular sufficiency - the PAS do not agree, 'However, Solomon previously reported on patients with normal values of MMA, homocysteine and serum B12 who still had clinical symptoms of a B12 deficiency and responded well to treatment with vitamin B12.' ( pubmed.ncbi.nlm.nih.gov/154... ). Neither do they agree about the high dose oral 'There is no proof in large prospective, double-blind studies that oral supplementation is as effective in reducing symptoms associated with vitamin B12 deficiency as parenteral treatment.'

The upshot seems to me to be that we simply don't have testing to rule out a benefit from injections, because although we can rule in deficiencies at several stages and with some of the available testing, we cannot rule out a cellular deficiency. Hopefully the CluB12 team will make headway with some of that, and some investigation of the combinations of SNPs affecting metabolism will pinpoint more reasons.

As to me, I have taken cyano, methyl, adenosyl and hydroxo - alone and in combinations - at doses from 1200 mcg daily to 15000 mcg daily (divided), as oral tablets, liquids, sprays, sublingual tablets and patches. Currently on usual NHS hydroxo loading doses. Cheers

am111 profile image
am111 in reply to bookish

In the paper you referred to, MMA was quite specific with 77% accuracy. Also, I think the ranges of these tests are too loose. In my experience, MMA should be below 150 or at least below 200, while the cut-off often used is 270 which is too generous. Same for other tests, and hence, I am not surprised that people feel B12 deficiency even in the normal ranges of these tests. For e.g. I started feeling B12 deficiency even around 250 or so on the serum tests while I know others who feel fine even at 100! Also, there are other factors such as kidney removal of MMA etc. and none of the tests are 100% fool-proof, as there are always exceptions, our bodies having plenty of variability. Perhaps there are people who don't produce enough MMA in their bodies to start with, so will never have a high MMA!

I refer to a study by kuzminski 1998, where oral cyanocobalamin 2000mcg brought down MMA to low normal (below 150 or so) in most of the patients barring 1 or 2 out of 18. The full data is presented. However, this happened after 2-4 months of regular use. My experience with methyl oral was that it gave me immediate relief initially but the effect fizzled out after a while. Injections certainly give immediate relief and are the preferred treatment but for maintenance, I do believe that the clinical trials show that oral cyanocobalamin works, although Methyl orals did not work for me even for maintenance.

Regarding injections, especially with more frequent ones, people often report problems with trying to reduce the frequency or feeling down just before the next shot. I had too much up and down on injections (twice weekly) and hence I switched to a daily cyanocobalamin shot of 50mcg which took some time to stabilise and kick-in but has worked well for me over time.

bookish profile image
bookish in reply to am111

I'd agree about ranges for all tests often causing more problems - this needs to be symptoms-driven, or at least with regard taken for symptoms. But for those with low levels and not aware of symptoms, at what point would you expect to 'feel' folate cycle/methionine cycle/methylation not working optimally. The symptoms are so wide and neither patient nor doctors generally make the connections. Hardly surprising that for a vitamin which isn't routinely tested the deficiency has often progressed to PA before being noticed. Regarding raised MMA (and hcy), some will not get high levels depending on the polymorphism combinations that they have expressed. Some get one raised, some the other, some both, some neither. And oral may reduce them to acceptable levels but not resolve the underlying failure.

You say daily shot but I'm assuming from your previous messages that you are taking oral 50mcg cyano? I can't say that I'm getting immediate relief from injections, and many don't - what I am getting is evidence of change and after a lifetime that is very welcome! We are all different and have to be treated as such. I am glad you've found something which is working well for you at this point. I had, but this has a habit of changing. Cheers

am111 profile image
am111 in reply to bookish

I currently do a 50mcg SC shot, which appears to be equivalent to about 3000-4000mcg oral assuming 1.2% absorption, which seems about correct for me. I was doing oral, but switched to a daily shot so that things are more consistent, as I found that on orals, when I had a diarrhoea, my B12 deficiency symptoms flared up. Obviously, the absorption had dipped. Same thing happened when I switched from taking w/o meals to taking along with meals, as apparently, the absorption of B12 is less when taken with meals. May switch back to orals once I am sure there is sufficient storage to ride out any ups and downs in the absorption (hopefully).

If you are feeling better on the shots, please continue. Shots did work for me for a while, but better if they were spaced out more. When I reduced the gap, I felt the up and down more. My understanding is that the body got used to the increased dose/starting getting rid of B12 at faster pace, leading to symptoms flaring up just before the next shot.

Joant24 profile image
Joant24 in reply to am111

Just a quick question, are my levels that dire that I need to worry. I was just going to start on oral supplements and all would be sorted?

am111 profile image
am111 in reply to Joant24

Your active B12 (60 - range 37-180) is on the lower side, but probably not dire. I really started to feel it when my serum B12 dropped to 140 (range 200-1000), although I have had vague symptoms for about 15 years now, which I now know were due to B12 deficiency (there are many many symptoms, such as poor digestion, dry mouth, headaches, muscle stiffness, skin fungal infections and what not)

Do you have any symptoms, particularly neurological? If not, probably not to worry too much, although B12 is so important for the body that you will probably feel much better and more energetic on higher B12 levels even if you don't have any major symptoms currently. If you don't have any neurological symptoms, it is probably safe to just take a few initial shots and then go on monthly shots. Even orals would probably work fine for you. Don't overdo it though and 1000mcg will probably work fine for you, as I and many others have experienced that the body gets used to a certain level of supplementation and reducing the dose can lead to B12 deficiency symptoms, especially when on higher doses.

Joant24 profile image
Joant24 in reply to am111

Thank you, makes a lot of sense. I am exhausted especially in the afternoon, poor concentration, feeling low but out done of that down to low cortisol

am111 profile image
am111 in reply to Joant24

These were my initial symptoms of B12 deficiency. You will probably feel better on B12 supplementation. Good luck!

CoeliacMum1 profile image
CoeliacMum1 in reply to am111

I have pernicious anemia (genetic thing several on my mums side including my mum now, me and my sister, grandma and uncle and cousin) although I was negative for intrinsic factor antibodies. This is a possibility, as the test has low sensitivity. I had other tests for anaemia too which were done at the time can’t recall what but remember them saying I had classic large size cells typical of megaloblastic anemia… I also have coeliac disease (contributing factor) and Hashimoto’s all for around around 12 years now and been having 3month injections throughout I had neurological problems which luckily resolved 3yrs on.

My levels are high end in range when due for my injections I eat diet rich in B12 also … I have suffered bouts of anemia with iron, folate & B12 over the years. One GP alarmed at my levels being high, not taking into consideration my B12 jab, even when told I recently had my jab actually stopped my injections - less than 6months down the line in double figures deficient again …Agree with you and helvella oral isn’t sustainable for many with B12 deficiency and rightly once stores are used it’s usually it, they don’t refill I was told, liver takes approximately 3-5 yrs to deplete.

am111 profile image
am111 in reply to CoeliacMum1

My B12 supplementation was stopped after I tested high when I was on orals !!! Doctors are really ignorant on B12 and have misled lots on people :(

CoeliacMum1 profile image
CoeliacMum1 in reply to am111

Appalling …I can see with daily supplements this will cause higher levels of total B12 (predominantly what NHS use it measures both inactive and active) so what about active B12 testing in this instance to see what your body is actually able to use.

I can see whilst supplementing levels are going to be artificially high and why they prefer to save their money testing every time but surely an annual test if you have had deficiencies before or underlying conditions that warrant this🙄

am111 profile image
am111 in reply to CoeliacMum1

Active B12 may also be high temporarily. The issue is that the body is just using the recently obtained B12 from the supplementation and does not have enough stores, so if you stop, it won't be able to supply you much and you will have issues. At least this is what I understand from my experience.

Even an annual test will come out high if you are on supplements. Unfortunately, there is no test to test the store level (or at least I am not aware of), and the actual medical advice is to be on lifelong supplementation having been once diagnosed with B12 absorption problems.

BTW, intrinsic factor is not the only cause of B12 malabsorption. There is atrophic gastritis and also, hypothyroidism can cause an impaired absorption. The last one is what happened to me and I got deficient in iron as well. After fixing my TSH, my iron absorption improved gradually and I no longer have to take iron. My B12 absorption may also have improved, but I still take a regular B12 supplement since I am vegetarian and still have symptoms.

CoeliacMum1 profile image
CoeliacMum1 in reply to am111

Oh yes I’m aware other conditions including my coeliac disease, crohns many digestive issues along with genetic, methylation problems and of course dietary and alcoholism, age and some medications…I meant I was diagnosed with pernicious anemia although had negative for intrinsic factor when tested…many think you have to have a positive test to have pernicious anemia.

From what gastroenterologist told me once stores are gone from liver their gone. Like you say living off the supplements your taking but they can be active an inactive …I remember a MMA test and know of active and total B12 along with folate and iron and looking at your reticulocyte in full blood count.

am111 profile image
am111 in reply to CoeliacMum1

yes, you can do MMA, homocysteine and also check MCV. A high MCV is due to B12 or folate or both. These tests should probably be done regularly for those on B12 supplementation, but it does not mean that if they come out fine, you can stop.

helvella profile image
helvellaAdministratorThyroid UK in reply to CoeliacMum1

There are plenty of knowledgeable doctors who insist that it is wrong to test B12 at all once on injections.

And plenty who have not the slightest idea about the issues.

A popular topic on PAS forum!

CoeliacMum1 profile image
CoeliacMum1 in reply to helvella

Absolutely encountered that and with vitamin D, luckily my Gastroenterologist letter stipulated these tests or to refer me back to him so he can do them so after waving the letter a couple of times I had them reinstated.

I just make sure I’m tested nearer the end of a B12 course not beginning but this time is going to be interesting as they’ve not sorted themselves out, I rang Monday as my annual review is due May and my B12 booked for 10th May but I’m going to be hard pushed to organise as now waiting to be able to book … apparently I can’t book until receive my letter to do so … then try getting booked in at local hospital (our surgery aren’t testing) I have numerous appointments as does my husband and being in USA in that time … I’m organised but they aren’t so my annual review will be 2 months late now, or run risk of same old problem … I don’t need these injections as my levels will be over 1000 as test a week or so after jab … why I can’t book given 2 bank holidays to navigate as well as our own things … I mean May is only couple weeks away 🤦🏻‍♀️ I physically have to have 3 separate appointments after got results obviously can’t organise that … seems I have to see various specialist clinicians.

helvella profile image
helvellaAdministratorThyroid UK in reply to CoeliacMum1

But why test at all?

CoeliacMum1 profile image
CoeliacMum1 in reply to helvella

I can see once supplementing this shouldn’t be a regular test at all, as it will be artificially high but if you have underlying conditions testing annually allows them to know the supplement/medication is still doing it’s job.

Like thyroid or any other medication we are trying to get optimal levels if we didn’t test how will you know other than if we are getting physical symptoms… I was asymptomatic for coeliac disease so gone undetected decades.

Example which happened to me at my last annual review…I had been taking better you 3000ui with K2 daily last year along with magnesium…I was one point lower than optimal and GP text me to supplement along with link to Vit D information. The year before my level was 75 same regimen 🤷🏻‍♀️…I already was supplementing, with more than her 800ui she suggested … if she didn’t test it I wouldn’t have known to up my levels I’ve changed to Bare Biology 4000ui and K2 still on magnesium…. I’m hoping to see improvement… I have no idea if my autoimmune or other conditions can cause these irregularities. I’ve struggled to maintain any decent level with vitamin D tablets.

I did mention to drop B12 testing this time for ease of organising, as from last 3 years my levels have been excellent so not overly worried about dropping just this year… receptionist couldn’t help me on that as not clinically qualified to say.

helvella profile image
helvellaAdministratorThyroid UK in reply to CoeliacMum1

PAS site says:

Measuring cobalamin levels is unhelpful as levels increase with treatment regardless of how effective it is, and retesting is not usually required.

NICE Clinical Knowledge Summaries Management of anaemia – vitamin B12 and folate deficiency

based on expert opinion in a narrative review Vitamin B12 deficiency [Hunt, 2014] the British Medical Journal (BMJ) best practice guide Folate deficiency [BMJ, 2017a].

“Cobalamin and holo-transcobalamin II levels are uninformative because they rise with cobalamin influx regardless of therapeutic effectiveness”.

How I treat cobalamin (vitamin B12) deficiency, R. Carmel; Blood. 2008 Sep 15; 112(6): 2214–2221. doi: 10.1182/blood-2008-03-040253

“During vitamin B12 injections, transcobalamin en haptocorrin are fully saturated with vitamin B12. Therefore, serum and Active B12 values cannot be used to ascertain the effect of treatment.”

Approaches to vitamin B12 deficiency Henk Russcher, Sandra G. Heil, Lennert Slobbe en Jan Lindemans; Nederlands Tijdschrift Voor Geneeskunde, 01 Jan 2012, 156(1):A3595

pernicious-anaemia-society....

:-)

CoeliacMum1 profile image
CoeliacMum1 in reply to helvella

Yep read various things similar before when GP stopped mine saying as much … I’m purely going on my situation and what my gastroenterologist has asked my GP to test for annually and he knows my situation better, as there was more comprehensive testing privately. If left to my GP I’d be still struggling with deficiencies probably … and probably not walking as all my conditions were found from disc bulge which caused paraplegic shock and couldn’t walk, as my deficiencies were so bad GP said go to physio after some sensations came back briefly … physio wouldn’t touch me sent me for MRI GP tried to over rule it saying pulled muscle and trapped nerve and MRI showed bulge hitting my spinal cord … orthopaedic consultant says he gets 1or 2 every 5years 1 in every 2 never walk again, luckily mine was a soft protrusion and it moved back after 6 months.

How my levels fluctuate to varying degrees I don’t know… but we can only look at things individually as we know no one is the same we all have our quirky problems.

bookish profile image
bookish in reply to CoeliacMum1

Hi, although I'd agree that testing vit D is a good idea, being fat-soluble and too much being problematic as well as too little, testing B12 is really not the same. Once on injections blood levels will be high, it is symptom reduction/management that is important and blood levels should not be used to judge that. With oral B12 levels can also be high but cells still be deficient. Even if you have any remaining liver store of B12, with PA you will not be able to use the enterohepatic recirculation route so it will be lost via bile and excreted - the process needs intrinsic factor to work, and you won't have any (whatever your test said). Being coeliac will make it harder for you to absorb many nutrients but I appreciate it isn't always easy to know which condition is causing what. I'm glad you are getting injections and making some progress. Best wishes

CoeliacMum1 profile image
CoeliacMum1 in reply to bookish

Thank you and yes I agree a a nd read similar over the years, I am only sharing my experiences of treatment which will vary from person to person in their needs or even who they are see regarding NHS v Private to some degree, although generally if it’s a straight forward situation NICE guideline will be implemented and followed but like other situations there’s nuances in way things are done. We all know what GPs and NICE should do for various situations and some long winded ways to get to same point on some things, but for thyroid guidelines they are not always carried out and various excuses are given or we would all with underlying symptoms have chance to get Liothyronine on NHS but we don’t.

What was explained to me by gastroenterologist/neuro orthopaedic consultants as I had nerve damage (paraplegic shock) as well as absorption issues so obviously oral is pointless for malabsorption.

My gastroenterologist asked my GP to monitor by annual testing and decade or so on this is what I’m getting this is my plan of action re my medical requirements.

Treating people with multiple autoimmune diseases will impact how maintenance is carried out depending on severity of the individuals history.

My long term management and screening was …a comprehensive list of testing requirements and to adjust supplements accordingly if the patient can go longer or need more frequent treatment depending on results and symptoms, if your surgery can’t do these annual requirements please refer the patient back and my department will undertake annual testing… this was his guidance more of less, not word for word as from memory , right or wrong in others eyes or guidelines (useful or not) it’s what I’m getting this was private I will add… I saw this gastroenterologist for 3 years weekly for first 9 months then fortnightly as my levels improved then monthly as became negative for coeliac antibodies and my symptoms improved, a completely thorough consultant but then he was being paid for this… guidelines did say to have a Dexa every 5 years for coeliac disease I had mine privately within 4wks of diagnosis but no NHS follow up afterwards 🤔…I know many have never had one in 20yrs of coeliac disease, so what is done and what isn’t can be of varying degrees.

I actually see no harm in annual monitoring of anything we all can get problems that can disrupt, in this way it will be picked up sooner whether or not it’s ideal to do a certain test as a standalone, it gives a bigger picture along with other tests undertaken for overall health.

Vitamin B&C are water soluble and what we don’t use is excreted predominantly in urine quite quickly.

I totally get the situation as levels will be high when supplementing and can be false positive really as not full picture of what is actually going on, similar to coeliac disease not eating enough gluten won’t pick up the disease accurately then getting a false negative … I have been there and had injections removed due to high readings and if wasn’t tested this wouldn’t have happened, all the same it’s in my remit to have tested.

bookish profile image
bookish in reply to CoeliacMum1

I am glad that you found a good gastro, although I'm sorry you had to pay for it. You are right, both thyroid and coeliac testing are fraught with complications and treatment often falls short, just like with B12. And they are so interlinked they are likely to co-occur for any of a number of reasons. My best wishes for continued improvement.

winet profile image
winet

Start eating meat

Joant24 profile image
Joant24 in reply to winet

Nope!

helvella profile image
helvellaAdministratorThyroid UK in reply to winet

Poor advice for someone who is currently low in B12. While substantial amounts of, say, liver would provide B12, there is always the likelihood of overdosing on vitamin A.

Lots of other meats, while they have some B12, do not have sufficient to ramp up the level from deficient to replete in a suitably short time.

Further, it is inappropriate to tell a member to do something which might be against their conscience, or there could be other reasons for being vegetarian.

(It might be acceptable to politely ask the member "maybe you would consider consuming meat in order to ...".)

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