Pernicious Anaemia Society
15,923 members11,149 posts

New here any advice?

Hi everyone,

I was diagnosed with hashimoto's just recently and on 50mcg Levo. My vitamin levels are within range but on the lower side. My doctor isn't concerned but I wondered if anyone has any advice?

Im just starting to supplement with jarrows b12 sublingual 1000mg which I'm cutting in half and possibly up it it in a week or so depending how I get on. I'm slowly introducing supplements (taking for 2 weeks then introducing another) I have ingennus super b complex to take alongside b12.

I also plan to supplement vit D with k2 and magnesium and spatone with vit c.

I guess my question is should I push for further testing or is self supplenting enough? I have been really unwell and was barely eating due to anxiety and no appetite. Could my low b12 be malnutrition and/or hashimoto's and gut issues related? I do have some b12 defiency symptoms but with my thyroid and possible adrenal issues it's difficult to pin point what is what. As I said my doctor isn't concerned and I'm not sure she'd agree to further tests as I'm 'within range'

As I'm new here I'm not sure what test results you require to be able to advise. So have added what I think, so apologies if any are irrelevant. Ive added vitamins and a full blood count. Any advice appreciated.

6th June

Serum ferratin - 45 ug/L (15-200)

Serum vitamin B12 - 287ng/L (180-2000)

Serum folate - 6.7 ug/L (2.8-20)

Vitamin D 22.7 (less than 15 severe deficiency, 15-30 deficient, 30.1-50 insufficiency, greater than 50 adequate)

Full blood count

Heamoglobin estimation - 139g/L (115-160)

Red blood cell count - 4.45 10^12/L (3.8-5.8)

Haematocrit - 0.397 ratio (0.37-0.47)

MCV - 89 fL (78-98)

MCH - 31.2 (27-32)

Total white cell count - 8.3 10^9/L

Thanks

Diane x

34 Replies
oldestnewest

I'm in a strikingly similar boat to you with very similar test results and yep, my doctor shut me straight down when I brought up B-12.

Others here will be much better placed to advise you so I'll just say that I'm right there with you, taking the nutritional side into my own hands.

If a doc hasn't done one yet, ask if they can do an autoantibody panel. Then you can see if there's anything autoimmune going on beyond Hashimoto's, that could be causing poor absorption. My doc offered me one based on family history ☺.

Best of luck xx

1 like
Reply

Hi scarlet,

Thanks for replying :) It's so frustrating isn't it. Doctors don't seem to care as long as your in range. I just don't know what to do for the best. I'm sure my doctor already thinks I'm just an over anxious patient. But It's only through thyroid UK that I've even managed to get the information I need and push for the tests I do have. Do you have hashi too?

Oh I will ask my doctor to test thank you, hopefully she will agree as my sister also has hashi and my mum has autoimmune diseases. I'm due more blood tests 18th July so will see if she can add it in. I'm so desperate to feel well again but not knowing alot about supplements it's scary to take things into your own hands. But seems most of us have to :( This site has been fantastic though and it's good to know your not alone in the struggle.

Good luck to you too xx

1 like
Reply

Also just had a quick peek at your previous posts and your vitamin levels are almost identical give or take a few!

Reply

Nuts isn't it 😁.

Haven't had my thyroid antibodies checked yet but doc, like me is pretty sure it will be Hashi's. My mum is autoimmune-tastic too. Your mention of your sis reminds me, must poke my brother into getting his thyroid checked as the rest of us are all hypo. Between you and me he seems to have gotten a bit squishy the last few years so well worth checking.

1 like
Reply

Yes definitely worth him getting checked. Was only because of me my sister was diagnosed. Brother was fine and surprisingly my mum was too.

How are you feeling with such low vitamin levels? And are you supplemeting?

Reply

Seem to have all the classic B-12 deficiency symptoms so plenty of nerve probs, fatigue, poor co-ordination, general stupidity and all that jazz. As you said though, it's really tough to tease apart whats thyroid related and what might be the vits. I'm doing alright though considering. Can still work four days a week okay ☺. How are you managing?

I've ordered my supplements from Europe so will be a few days till I can get started. Think I might take your approach and introduce them gradually, so I have a better idea what's helping. Going to start on a big ol 5000 sublingual B-12 and a B complex 👍. Stuff the doc and her "your B-12 isn't low" *rolls eyes*.

Reply

Hoping Thursday's autoantibody profile will include at least one pernicious anemia marker so can get a clue one way or another.

Reply

I'm much the same in regards to symptoms. Had a numb upper arm for months and my fingers on that same side twitch quite badly at times. Dizzyness, vision issues, tinnitus, poor coordination, brain fog, fatigue. Usual suspects lol. I had no appetite either and lost 3 stone in weight so I'm now underweight. Although I have started eating better again since I started levo. I also went gluten, dairy, soya and egg free as I had gut issues which also are improving. My mental health has suffered too. It's been hell if I'm honest. Went undiagnosed for over a year whilst having quite severe symptoms which my doctor kept telling me was anxiety. I was very hypothyroid but I'm seeing some Improvments since I started levo which has given me hope.

It's great your still managing to work, I've been off sick for around 4 months now. Was struggling to even get out of bed at times and unable to deal with the most menial tasks and had severe anxiety.

Im starting slowly with the b12 as I read it can cause anxiety which I deffo don't need haha. But yes always a good idea to gradually introduce them. If u have any adverse reactions you can pin point what the likely cause is.

Good luck for Thursday! Its weird isn't it we hope for something to show lol But know exactly how you feel. I honestly thought I was going mad. Was such a relief when I got my diagnosis and so much made sense to me.

Reply

I'm not surprised you haven't been able to work! Have been very lucky that my mental health hasn't suffered too much because that depression, stress and anxiety alone would make everything 1000x worse. Boss is pretty understanding when I show up late too, thank goodness, or I'd have been fired years ago.

Doc zeroed straight in on anxiety with me too. Seemed positively disappointed when I said I wasn't anxious at work. What I didn't say is it was HER and other doctors' disinterest making me anxious lately. Work was practically a rest from the worry. Thank goodness for the folks here helping each other or I think we'd all go genuinely nuts.

Great to hear that the levo and diet changes are helping. Your levo dose is probably nowhere NEAR as high as you need yet, so fingers crossed getting you up to the right dose will help a lot more.

You're honestly doing amazing with all you've had to deal with xx

Reply

Makes a difference when your boss is understanding, mine has been great so far... thankfully.

That's the thing isn't it, stress can cause all sorts of upset and for hashi stress can play a big part. But for me it's my health that's causing my stress. Vicious circle lol

Yes thank goodness for this site I've learnt so much and hopefully can put all the info to good use.

Thank you so much. You seem to be doing amazing too, hope you get the help and treatment you deserve from your doctor and good luck with your supplements. Would be great if you could let me know how you get on as we're in similar situations :) Also feel free to pm if you ever want to chat x

Reply

Absolutely and the same to you. Will be great to hear how things are progressing for you. Here's hoping for some nice, unequivocal test results for us both!

Am off to pick up my first prescription of levo after work and then they're using me as a pincushion in the morning. Small steps but in the right direction ☺

(Can't wait to give up the gluten after this test is done lol)

Reply

Hopefully like me you will notice the difference with levo. I definitely feel less fatigued/shaky/weak and sleeping much better. I started on 25mcg (now on 50mcg) but noticed a difference even with 25mcg.

We will get there! Might be small steps but fingers crossed no falling over lol

Take care x

1 like
Reply

Hi could you please tell me what you eat since going gluten,dairy soya and egg free? I have symptoms exactly like yours and getting no help from doctors, I also don't eat meat and have no appetite so very weak at moment, looking for help as I live on my own and find it difficult to get out. Thanks

Reply

Hi gryphon,

Im sorry to hear you are suffering with the same symptoms you definitely have my sympathy.

My appetite has improved since starting levo and I'm able to eat much better now which is a relief. I also have food intolerances and gut issues and found they have greatly improved with diet which also helps my appetite.

I eat a lot of fresh fruit and vegetables, chicken, pork, fish, beef. Free from bread, pasta and cereal. Do you eat fish? Also you could try some meat substitutes as it's important to get enough protein.

There is a great selection of free from at tescos and they do a home delivery service if you order online which might be helpful if your struggling to get out and are weak. Bfree do a great seflection of breads which are all gluten, egg, soya and dairy free. They also do wraps too. There is a big selection of dairy free milk, I personally go for dream rice milk with added calcium b12 and vit D. However some people may prefer coconut milk.

It takes some getting used to and you have to check the labels for everything although I found it surprisingly alot easier than I imagined and don't feel I'm missing out on anything. You could also Google some recipes although if your like me I didn't even feel up to cooking so went for quick and easy to begin with.

May be worth googling autoimmune diet as there is plenty advice online with what you should and shouldn't eat.

Do you suffer from intolerances?

If you need anymore advice or have any questions please ask. I'm far from an expert but happy to help in any way I can. Good luck I hope you start to feel better soon x

1 like
Reply

Unfortunately, if you supplement with B12 tablets further test results will be skewed and make it harder to get B12 injections, which is the recommended treatment in all the guidelines for the neurological symptoms of PA/B12def. you've described in order to prevent permanent damage - 287 not a particularly high result and serum B12 test unreliable for many reasons.

If the cause of B12 def. is dietary, oral supplementation and a nutritious diet will usually suffice but, if you have an autoimmune condition, (Hashi's and PA/B12 often co-exist)*, H/Pylori, or problems with digestion, e.g. coeliac, Crohns, gastritis, gastric surgery etc. the condition is more complex as B12 from food is not likely to be absorbed, depletes over time and oral supplements are not usually absorbed either.

bmj.com/content/349/bmj.g5226

You could try writing to your GP with latest BMJ research document summary (full document behind a paywall) above, which states that there is no reliable test and symptoms are paramount.

The Dutch links on the r/h side of this forum explain more about testing, B12 misconceptions and the importance of early and adequate treatment. it might be a good idea to join the PAS if you need more support to get the correct treatment.

Many of us on the forum self inject if you eventually decide this is the best course.

stichtingb12tekort.nl/weten...

b12deficiency.info/what-to-...

..........

Two experts in the field, Sally Pacholok, "Could it Be B12?" and Dr Joseph Chandy, have been studying vitamin B deficiency for years and both describe how under diagnosis is causing severe and permanent neurological/psychological damage if not treated early and adequately :

‘B12 affects every system — *nervous, digestive, cardiovascular, endocrine, ear, nose and throat,’ he says. It should be easy to get all the B12 we need from our diet. It comes from every single animal product — meat, fish and dairy. But two problems can affect this.'

‘As we age, the stomach shrinks and produces less of the acid needed for B12 absorption to take place,’

‘Second, those with pernicious anaemia (*known as B12 neuropsychiatric syndrome) have an inherited glitch that means their body can’t absorb B12 from the stomach. This can kick in at any age, but is more common as we age.’

...........

Finally, this research link was originally posted by Diogenes, Dr John Midgley, scientist and advisor to TUK. It highlights the progression of autoimmune thyroid disease through deterioration of gastric mucosa, leading to PA:

journal.frontiersin.org/art...

Best wishes for correct diagnosis and treatment Diane.

Ps. I agree with Marz - more and more researchers are finding the biome is the source of disease and leaky gut/intestinal disease/gastric atrophy the root cause of autoimmune disease. It is this that is likely to eventually lead to low hydrochloric acid needed to begin the process of absorbing B12 (the most complex and difficult to absorb) as well as other essential vitamins and minerals. I believe this is at the bottom of all our own family autoimmune/Hashimoto's thyroid/PA/B12 problems.

2 likes
Reply

When you have Thyroid issues then low B12 - Folate - Ferritin and VitD are invariably LOW - especially with Hashimotos I was diagnosed here in Crete back in 2005 at 59 - so having had Crohns since I was 27 then I think of mu issues as being auto-immune - so healing the gut is KEY :-)

2 likes
Reply

Diane, - normal range is where most people will be perfectly fine.

unravelling the symptoms of B12 deficiency and hypothyroidism is quite difficult so diagnosing on symptoms is going to be difficult at best

50mcg is a low dose of levo so that means its still going to be difficult to diagnose on the basis of symptoms and my personal advice would be to ensure that the problem isn't thyroid before starting on mega doses of B12 - and the doses you are suggesting are mega doses - and not really suitable unless you know you have an absorption problem.

I have great sympathy as 50mcg was a dose of levo on which I actually felt worse not better - needed at least 2x that to feel okay.

Reply

Hi gambit62,

Thank you for taking the time to reply :) What you are saying goes against what I've been advised on the thyroid forum, so I 'm a bit confused. For hashimoto and to feel well all vitamins and minerals should be optimal. My b12 is 287 and range is 180-2000. I've read that people can have neurological symptoms with anything under 500. I know I am in range with what doctors consider 'normal' but its at the very lowest of 'normal' hence self supplementing as doctor won't do anything about it. I'm taking 500mcg at present which I'm led to believe is only 200% of the daily recommended amount? I wouldn't imagine that would do any harm with levels being so low and being a water soluble vitamin. Please do correct me if I'm wrong on anything I'm just learning. And I do appreciate all advice. It's just very difficult to know what to do when I'm receiving conflicting advice. HELP!! Haha

Someone on the thyroid forum advised I ask here for possible PA and help with b12.

Thanks

Diane x

1 like
Reply

it is a very grey area. Whilst B12 may not be toxic I am not convinced that supplementing with very high doses of B12 is without risks. There is a think called functional B12 deficiency - in which levels of B12 are high but some sort of reaction stops B12 getting through to cells - as a reaction it seems to be common enough for functional B12 deficiency to be recognised as a marker for a couple of conditions that will result in raised B12 levels. It may be water 500mcg is actually 2,000%-4000% of RDA depending on whether you are using US or UK measures. B vitamins may be water soluble but that doesn't mean that if you are putting in an excess it is immediately removed by your kidneys. You can overdose on B6 which is water-soluble.

Hypothyroidism is associated with vitamin and mineral deficiencies - though the exact causal mechanisms are not well understood. Iron tends to be the first deficiency to develop. There is also quite a high cross-over between hashimotos and PA - the most common cause of B12 deficiency and another auto-immune condition - 10-40% of people with hashis seem to develop PA and about 40% of PA patients develop hashis. However, these are probabilities and applying them willy-nilly to everyone isn't helpful because we are all individuals and our genetic make ups vary a lot. The genetics associated with hashis and PA and the interaction with environmental factors are a long way from being understood.

I am aware that there is a lot of quoting and bandying of figures from books on B12 deficiency as if they apply to all hypothyroid patients rather than questioning and looking at the whole individual - ie assuming that everyone has PA so needs to follow protocols that relate to patients that have and (in the case of some figures quoted) are being treated for B12 deficiency with injections of B12 - something that changes parameters significantly.

Additionally supplementing B12 before you have a diagnosis makes diagnosis extremely difficult and, with the current state of knowledge amongst medical professionals in general about B12 can make it impossible to get a diagnosis. Please take a look through the pinned posts.

Yes, people can have neurological problems with levels of 500 but this is rare and is likely to be the result of rare genetic factors rather than an absorption problem. Serum B12 isn't a particularly helpful test for diagnosing whether your B12 levels are right for you. The test also gives results that can vary by about 20% so being within 20 of the bottom of the range (and your results are above this) could well be a deficient measure. Observing a significant downward trend in B12 levels (ie greater than the 20% that is the margin of error on the test) would be very good evidence of an absorption problem as B12 levels in someone without an absorption problem would be maintained pretty constantly at the levels that are right for them.

I am sorry if this is confusing - that is because you are looking for certainties where there aren't certainties. I really would advise making sure that your levo levels are right before jumping to the conclusion that you have every other mineral and vitamin deficiency that could be a consequence of hypothyroidism. It is generally easier to rule out one thing at a time. Hashis has come up as the obvious one at the moment. Trying to do too many things at once will make sorting out what is going on very confusing.

Reply

Thank you very much for your informed reply.

Yes I am dealing with my hashimoto first and foremost, been on levo for 7 weeks and only now am I planning to slowly introduce supplements. However I will reconsider based on your advice. I don't think I am jumping to conclusions though as the results speak for themselves. I am low in range and also have symptoms. So I do feel it's worth supplemeting however maybe not at such high doses.

I am very confused about what to do. As based on the advice given from thyroiduk 500mcg is a small dose, most people it seems are taking at least 5000mcg daily as I was advised to do but felt it was too much.

2 likes
Reply

yes, most people on TUK do supplement with ridiculous amounts of B12 - there is no guarantee that oral supplementation will have any effect if you have a B12 absorption problem and, as above I don't think supplementing at those levels is advisable if you don't have an absorption problem - if you have an absorption problem then it dramatically affects how much B12 you absorb - is about 1% on average outside the ileum so you need to take large amounts to get enough.

Reply

A lot of people do have absorption problems with hashimoto's as it effects your gut, which leads to low stomach acid which then leads to vitamin deficiencys. I myself have had terrible gut issues. However I do appreciate your opinion and advice and its always good to take into consideration other points of view before making a decision.

2 likes
Reply

Diane17884. I have hashimotos as well as PA - that is quite common and it is PA that is likely to be the cause of low stomach acidity rather than hashimotos. I did a lot of research around the connections between hashimotos and absorption problems and the state of play is that nobody is quite sure what is going on - there are a number of ways that hypothyroidism can lead to absorption problems - developing both hashis and PA is only one of them and it is a long way from affecting everyone and that is the point I am trying to make.

And not everyone with hashis will develop PA or another absorption problem.

To assume that something that applies to a subset is going to apply to everyone - which seems to happen quite often - is just as wrong as assuming that everything is down to thyroid or down to PA or any one condition and refusing to investigate anything, or assuming that your thyroid is being treated effectively just because your TSH is back in the normal range. However, it is best to completely rule out the obvious before muddying the waters by trying several things at once.

As explained above your B12 is a long way from conclusive. There are risks to the action you are choosing and all I have done is point out what those risks are. You are perfectly within your rights to treat yourself - I am not a medical professional but the research I've done means that I personally would not draw the conclusion that you should be behaving as if you have a B12 absorption problem at this stage.

Reply

I am not behaving like I have an absorption problem. I do not know either way. I came here to ask for advice based on my blood results and to ask if there's any indication of a wider issue, PA for example. And should I push the doctor for further tests. I am not claiming to be an expert far from it but I have also done a lot of research since being diagnosed and its widely accepted that hashinotos can cause vitamin and mineral defiency. What I didn't come here for was a debate or to argue over who's right or wrong. I respect your opinion and took your advice on board. Either way I want to help myself in anyway I can and increase my levels particularly b12 to at least halfway in range with or without an absorption problem. It seems to me you have a bee in your bonnet about this.

We all know doctors go by ranges when it comes to tests and not by actual symptoms. I'm sure my doctor already thinks I'm an over anxious patient as I've had to push so hard to get this far. So I'm not sure she will do more tests based on my 'in range' results hense my reason for researching, asking for advice and self supplemeting.

I personally believe the benefits outweigh the risks. I have been sick for a long time and what your suggesting is basically wait until my thyroid has been treated and levels are in range, by which in that time I could have irreversible damage from lack of b12. And apart from skewing any further results I don't know what these risks you are claiming are? From my research and from speaking to people who have self supplented vitamin b12 even at high doses it is safe. Oral doses of up to 5000 have been clinically proven to show no acute side effects. It is not a toxic vitamin. Its very well researched and even after decades of studies, there are still almost no known symptoms of a vitamin B12 overdose, even with extremely high doses. As a result of this, no maximum dose of vitamin B12 has been put in place.

Again I thank you for your opinion and advice however I think we just need to agree to disagree :)

1 like
Reply

Diane17884. There are a number of things throughout this whole thread that could do with further comment. So...first...

You have Hashimoto’s and there are autoimmune conditions in the family. This puts you at a higher risk of having Pernicious Anaemia (in addition to the Hashi's) and although the TUK forum advises oral supplements for absorption problems associated with thyroid issues, oral supplements for those with Pernicious Anaemia are not the recommended treatment and often don't work anyway. This is particularly important when neurolgical symtpoms are present (oral supplements are definitely not the recommended treatment for B12 deficiency with neurolgical symptoms, whatever the cause).

It's worth noting that the absorption rate from oral supplements is approximately 1%-3% whilst the absorption rate from B12 injections is 100% - B12 injections are therefore a much more intensive treatment - which is why, in the UK, they are the only prescribed treatment for B12 deficiency and Pernicious Anaemia (and essential when neurolgical,symtpoms are present).

Here's a link to more information about oral supplements:

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

It's also worth noting that under-treating B12 deficiency (whether caused by PA or some other cause) can result in irreversible neurolgical damage - as you are aware. And self-treating with oral supplements (even high-dose ones) prior to investigations and disgnosis can leave you exposed to this possibility.

So, your claim above that you 'personally believe the benefits [of taking high-dose oral B12 supplement] out-weigh the risks' is misguided. As Polaris, JoRR and Gambit62 have pointed out, taking oral B12 supplements will skew any further blood tests - because levels will be falsely raised by the supplements - but not raised sufficiently to effectively treat B12 deficiency or Pernicious anaemia (if you have them).

So, if you raise your B12 levels by taking oral supplements, no doctor will investigate, diagnose or treat PA or B12 deficiency - or believe you have it - even if you do. Nor will they do any of the onward referrals that are often necessary for those with B12 deficiency or PA (gastrologist, neurologist etc.).

With reference to,your claim...

'I want to help myself in anyway I can and increase my levels particularly b12 to at least halfway in range with or without an absorption problem'

For the reasons discusssed above, there is no sense in taking oral supplements to increase your B12 levels to mid-range since there is no such thing as an 'optimal' level, where B12 deficiency / PA is concerned. Serum B12 and active B12 levels are meaningless once supplements have been taken - and they won't tell you anything about whether a potential B12 deficiency is being effectively treated, or not. So the idea of being mid-range means diddly-squat! And a mid-range level will not protect against 'irreversible damage from a lack of B12' - the assumption you appear to be making (oh, if it were only that simple).

It’s also worth noting that the way that the TUK deal with supplementation for Hashimoto’s and the deficiencies that may cause is NOT what we would recommend here for the treatment of Pernicious Anaemia or B12 deficiency from other causes (of which there are many).

The two conditions have to be considered and treated separately, albeit sometimes simultaneously.

As Gambit62 points out, unravelling the symptoms of Hashimoto’s and B12 deficiency/PA is incredibly difficult because there are so many cross-over symptoms. And I do agree that it sounds like your Hashi's is currently been under-treated, and this may well be the cause of your ongoing symptoms, which may well improve once your medication is increased.

And whilst you may have researched Hashimoto's, you may not have researched Pernicious Anaemia and B12 deficiency that is not related to Hashi’s. So...so advice based on the potential for Pernicious Anaemia and B12 deficiency from non-Hashi's causes (presumably why the TUK forum advised you to,post here so what you came here for)...

For now, I strongly suggest that you stop your oral B12 supplements and do the following:

1) Because if your family history of autoimmune disease, there may be an underlying cause for your symptoms, so do as ScarletWoodland suggests and ask your GP to do an antibody screen. If any levels come back raised, your GP should refer you to a rheumatologist for further investigations. NOTE - this antibody screen does not test for Pernicious Anaemia. For this ask for...

2) IF antibody test - but note that 40%-60% of those with PA test negative - so you can test negative and still have PA - (this is called antibody negative PA)

3) an MMA and homocysteine blood test can help clarify whether B12 deficiency is present if,you have symtpoms but serum B12 is thought to be within normal limits (levels will be raised it the cells are short of B12 - but can also be raised by other things (liver kidney problems for MMA and homocysteine can be raised in the presence of folate deficiency). You will have to be supplement free for several months - perhaps longer - for these tests to be accurate.

4) About the gastric issues and weight loss. Those with low stomach acid often suffer from repeated infection with a gastric bacteria called heliobactor pylori (HP) - which could be responsible (at least in part) for your gastric issues. Ask your GP to do a Urea Breath test to rule out infection with this bacteria. If infected, your GP can prescribe eradication therapy (double or triple antibiotics). Breath test should be repeated two weeks after completion of treatment to ensure successful eradication (I had to have two successive treatment to completely eradicate this nasty little bug). Note - if you are taking PPI's or other forms of antacid, this can skew the test results. Need to stop two weeks prior to any testing.

5) read and discuss these guidelines for the treatment of cobalamin deficiency with your GP, especially see the diagnostic flowchart and details about serum B12 test being largely discredited as a marker of B12 deficiency:

onlinelibrary.wiley.com/doi... in Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

Also a good idea to read the second and third PAS posts in the pinned posts section - lots of good and accurate information there from the Pernicious Anaemia Society which will help you to understand what your GP should be doing for you...perhaps take along and share with him/her.

And finally, it appears to me that you came here asking questions...and then didn't like some of the answers because they didn't accord with what you may have read or heard elsewhere. Well I'm sorry for that...but there is a lot of nonsense published on the internet about all things B12 deficiency. So...if you have questions, please post them here....lots of knowledgable folks who are grounded through and by appropriate scientific research papers.

And healthy and polite debate is something that we do engage in here...because it keeps us all learning. And more importantly, it keeps us all safe.

And whilst I remember, please do take care if you add other supplements...in particular, always check contraindications with other medications and medical conditions (I.e. vitamin B6 in even small excesses can cause potentially irreversible neurolgical damage, vitamin K2 is dangerous for those with blood disorders, stents, history of clots etc. - always best to check - drugs.com a good site for this.

3 likes
Reply

Hi foggyme,

Thank you very much for replying. That has actually been really helpful and informative particularly the advise about testing. And was the sort of advice I was looking for. It's not that I didn't like the replies, I welcome all opinions and I'm open to learning. I just felt that my questions weren't getting answered as the focus was on how self supplemeting is such a terrible thing. Unfortunately some people in some cases are forced into doing so as they don't get the correct treatment or because tests are in range doctors won't test further or give treatment. I do understand that for people with possible PA it's not the correct thing to do. However I do believe my levels are most likely due to diet/hashi/gut issues but thought I'd pop over here with my results and ask for some opinions.... just incase. Not knowing much about PA Im not sure what a typical person with PA results might look like.

I personally think giving clear advice and educating someone is alot more beneficial than lecturing and being almost rude to them. And im sure you can appreciate my confusion given that TUK are advising the opposite as suggested here.

I will definitely have a look at the links you posted and check out the pinned posts too.

Thanks again for taking the time to explain properly and advise possible options for me. I appreciate it :) x

1 like
Reply

Hi Diane17884.

Just a couple of things I forgot to say...

Hashi's (not my area of expertise) and PA aside, there are many other potential causes of B12 deficiency (HB infection, IBS, Coelic disease, Crohn's disease, infestation with parasites, medications that impede the absorption of B12, gastrointestinal surgery, to name but a few). With the exception of medications, HP / parasite infection, these causes are not usually treatable with oral supplements - injections are required for appropriate and efffective - as per BSCH guidelines (in the link above).

Note: do not attempt to go gluten free until you've been tested for Coelic disease (the test will not work if gluten free already).

And it's virtually impossible to get a GP to take the idea of possible B12 deficient seriously once any form of supplementation has occurred. And this means that other possible underlying causes, which may need additional treatment over and above B12 injections, are never identified and dealt with.

Unfortunately, we see a lot of poeple in the forum who have mistakenly self-supplemented and then struggle to get appropriate diagnosis and treatment - some ending up with irreversible neurolgical damage. And yes, all here know the frustrations of trying to get GP's to understand and treat B12 deficiency appropriately. People here have found that the best way to deal with this is by being persistent and providing a GP with appropriate treatment guidelines and information (sometimes it works, sometimes it doesn’t). Sometimes writing a 'treatment appeal' to a GP works well, since if the guidelines and information is included with a letter, they have to read it, it becomes part of your medical record, and refusing to act/treat according to those guidelines leaves them potentially exposed.

So, it's not the case that the forum 'is against' self-supplementation, it’s just that we recommend this as a last resort, when all investigations and tests have been completed and if, in the presence of symtpoms with no,other discernible cause, a GP still refuses to offer treatment, since the consequences of 'going it alone' can be very detrimental to long-term health.

We can and do frequently support people by providing information about where to obtain supplies for self-injection - but never as a first resort.

In your case, with your history of Hashimoto’s (autoimmune) and the family history of autoimmune conditions, it’s more likely that you a) have PA or b) have another underlying autoimmune condition (i.e. Coelic/Crohn's disease) - and these will need to be ruled out/in and treated, if necessary. So, I'm not convinced that it's advisable to simply assume that your B12 levels (which are not showing deficient - but we all know how problematic that concept is) are due to Hashi's. And your gut issues are the things that required further investigation (Coelic, Crohn’s, PA, HP etc).

I'm sorry if you interpreted any of the replies to you as bordering on rude. Have to say, I've read them all and don't see anything that remotely resembles rudeness - just concern for your health, the position you're in, and an over-riding concern that you do not put yourself in a more difficult position by self-supplementing too early in the process. Something we sadly see, far too often.

For now, here's some more information that might help:

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

stichtingb12tekort.nl/weten... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

stichtingb12tekort.nl/weten... (B12 Deficiency and Neuropsychiatric Symptoms)

gov.uk/drug-safety-update/n... (Low B12 - Nitrous Oxide Contraindications)

ncbi.nlm.nih.gov/books/NBK2... (Gastric Autoimmunity: Heliobactor Pylori)

stichtingb12tekort.nl/weten... (Methylmalonic Acid – MMA)

cdc.gov/nchs/data/nhanes/nh... (Homocysteine Testing Information)

ncbi.nlm.nih.gov/pmc/articl... (No Superior Forms of Cobalamin)

Have to say, B12 deficiency (from whatever cause) is extremely complex and as you know, GP's are often not well informed. So...good luck with the reading and keep pressing your GP (as per above).

Good luck and please post again if you have any further questions or need more advice about how to get your GP to take this / you seriously.

👍

1 like
Reply

Hi Diane, sorry to hear about your recent diagnosis with Hashimoto. I know your concerned about malnutrition, have you lost more than 5-10% of your body weight in last 3-6 months or have a BMI less than 18.5?

I believe if your bloods are in range even if at the lower end then you probably have nothing to worry about. We are all very different and unless you know what your bloods were when you were well you do not know what is normal for you. However it is good to see if they are stable or reducing. You may find it better to get vitamins and minerals from food as there are so many vitamins and minerals your body needs. With (hypothyroidism) I know that the thyroid hormone is made with iodine. Good sources of Iodine are fish, egg yolk and iodinised salt. I was also told by my lecturer that non organic milk contains more as than organic because they do not use iodine to clean the cows teets. I have a friend with Hashimoto and she is less ill when she gets food in the cupboards and eats well. I think it can be a viscous circle because when you feel tired and unwell planning, shopping and eating well can be harder. Are you having any trouble with eating well. ?

Reply

Hi k9Hines,

Thanks for replying :) Yes I've lost just under 3 stone in weight since January. And now underweight at 5ft 6 and 7st 11. I had no appetite whatsoever the thought of food would make me feel sick and sometimes I'd gag when trying to force things down. I suffered with very bad anxiety, had gut issues and was barely eating bar smoothies, fruit and soup. Since my diagnosis, starting levo and going gluten, dairy, egg and soya free my gut issues and anxiety has improved and my appetite has returned. So I'm able to eat much better now. I'm trying my best to eat a varied and healthy diet and get enough calories vitamins and minerals.

As you say it is difficult as I don't know know what my levels were when I felt well. Most people advise halfway in range with hashimoto's so I would like to get them up a bit as a precaution at least.

Reply

As others have said - supplementing B12 in any form will skew your test results. Before you had your blood test is there any chance you would be supplementing in any way? (This might include multivitamins, fortified fruit juices and energy drinks) Absorbtion problems such as PA are far and away the most common reason for B12 deficiency - absorbing B12 is a complex and multi-stage process and it can go wrong at several points. True dietary deficiencies are rare except for vegans. You need to be totally clear of any B12 supplements for 4-6 months before having a blood test. So if you were having any form of supplement, even unknowingly, your 287 could be falsely high.

Even if not skewed by supplements, your result still may not be giving an accurate picture. For all of us, a significant proportion of the B12 in our bodies is 'inactive' B12 analogues and cannot be used. The proportion that is inactive is usually assumed at a certain percentage, though it is actually unknown how much is active unless you have an active B12 (holotranscobalamin) test. There are only certain places that offer this test. Certain things can cause all your B12 to become inactive - for example, using nitrous oxide (gas and air).

If you supplement orally when actually you are not able to absorb it, your results will come out 'normal' while you could be suffering neurological damage which in the end can become irreversible.

Supplementing with folate (folic acid / B9) can also mask a B12 deficiency.

1 like
Reply

Hi JoRR,

Thanks for your advice :) No I wasn't supplementing whatsoever when I had my blood tests. As mentioned tho I was barely eating and what I was eating had no b12 in (pure fruit smoothies, soup and fruit was all I could manage) I also have hashimoto's and gut issues/intolerances which can lead to vitamin deficiency. I'm hopeful its just a combination of everything and I don't have anything else wrong. I just wanted some advice on my blood results and if PA looked remotely possible as I will admit I know little about it and was advised to ask on thyroid UK.

Reply

That sounds possible then, if your diet was very low in B12. I hope you find what works. Well done on coming this far. There's so much to learn isn't there! My B12d was diagnosed first, but now also being treated for hypothyroid. Not sure if it's hashi's - I'm not sure how you find that out. I did have some thyroid antibodies, but only a bit above range. But my TSH improved massively after starting the B12.

Reply

Yes diet was shocking but its greatly improved now. I will also admit that I was abusing alcohol as a way to cope with my physical symptoms and terrible anxiety which I was constantly being fobbed off about. But realised it was doing more damage than good and haven't had a drop since January. But I know that alcohol can deplete b12 too.

Thank you I hope so too. Finally feel I'm on the right path at least. Just need to be patient which isn't my forteit lol

It seems that hashi goes hand in hand with low vit b12. From what I'm led to believe anything above range however small would be hashimoto's (but I'm newly diagnosed myself and still learning) It's diagnosed with an thyroid peroxidase antibody blood test which sounds like you've already had. It might be worth posting your results on Thyroiduk if you haven't already done so. Everyone is really helpful and knowledgeable.

Good luck on your journey and thanks for your advice :) x

1 like
Reply

Diane, I was also recently diagnosed with Hashimoto's. In January I had an onslaught of neuropathy issues in my feet - then legs, then patches all over. Doctors also were not concerned. Meanwhile my anxiety went through the roof. Once my Endo got me on Thyroid meds and my TSH was slightly within range - he acted like his job was done. Of course my GP was ready with any pills to help with symptoms - but other than a few blood tests and an EMG and MRI, no one (not my Endo, or my GP or my Podiatrist) was really looking for answers. They each wanted a follow up in 4 weeks - while I was in pain and anxious about it. I then stumbled on Dr. Isabell Wentz who writes about her Hashimoto experience and I felt like I was home- she had similar experiences over the course of years - mostly gastro and listless. I encourage you to look her up - she has a blog and a book. She is a Pharmacist and patient. She mentioned that the best gift you can give to yourself is an appointment with a "Functional Medicine doctor". So I began looking - found a program at the Cleveland Clinic. I never felt better. Blood tests, elimination diet, exercise, sleep and supplements. Yes they are doctors - but they also know that the body is able to heal itself if you give it the correct environment - which means optimal levels of vitamins/minerals etc. Other major hospitals also have programs as this is relatively new, but a nationwide program of medicine encourage you to start with Isabell Wentz. Good luck.

1 like
Reply

You may also like...