A deficiency of B12: Other posts that needs no... - Thyroid UK

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A deficiency of B12

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shawsAdministrator
48 Replies

Other posts that needs no explanation

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shaws
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48 Replies

Thank you for posting Shaws - several years ago I needed B12 tablets and....they made such a difference, together with multi-vitamin supplements

Breizh

Coastwalker profile image
Coastwalker

Many thanks shaws, i have just watched the top video whilst cooking our dinner, it was so well worth watching.

From that first video I learnt that other illnesses besides Multiple Sclerosis are also being mistaken for B12 Deficiency.

My Father had both Parkinson's and Parkinson's Dementia along with Progresive Supra Nuclear Palsy, I have often wondered if it was all connected with vitamin Deficiencys.

Today after watching your video shaws I realized so many of my Father's symptoms match B12Deficiency, so wish I knew my vitamins and (limited) blood result knowledge back then, sadly too late now.

shaws profile image
shawsAdministrator in reply to Coastwalker

But not too late for you, as we are aware there can be connections within families. I'm sorry your dad suffered and when we look back (I am referring to myself too) we think 'if only we knew then what we find out now'. It might benefit someone we know and help them.

Coastwalker profile image
Coastwalker in reply to shaws

Everything happens for a reason, comes to mind shaws.

Yes! will definitely be using the knowledge, I already have two people in mind, both have memory problems, one will be very mindful to it, thankfully. :) though the other one might be more of a challenge to persuade.

shaws profile image
shawsAdministrator in reply to Coastwalker

It is also reasonably cheap and I know you are aware that sublingual B12 methylcobalamin might be preferable to B12 injections. Plus we cannot overdose. Vitamin D should also be checked as well.

victoriaspromise.com/why-we...

Coastwalker profile image
Coastwalker in reply to shaws

No! actually I did not know shaws, so thank you. :)

I know that sublingual under the tongue goes straight to the blood, but never concluded that sublingual is in the same league as taking B12 injections ?

Thanks for your D3,K2 and calcium link, good to refresh as I can never hold all the information in my head, much clearer now. ;) :)

Many thanks,

shaws profile image
shawsAdministrator in reply to Coastwalker

Some say injections are preferable. Some need more than 1 every 3 months but the guidelines are 3 monthly. Some people buy there own and inject but I couldn't do that.

Sublingual trial has been successful but it should be methylcobalamin:

ncbi.nlm.nih.gov/pmc/articl...

Coastwalker profile image
Coastwalker in reply to shaws

Thank you shaws, good to know that the injections have the same benefits as the sublinguals.

Coastwalker profile image
Coastwalker in reply to shaws

Hi shaws, I watched a Sally Pacholok B12 D video a few days ago and was shocked, but not really surprised (nothing surprises me anymore) to see that my Father's 'Supra Nuclear Palsy' was added to the B12 D list. Also My Mum, also Hypothyroid, had no taste buds for 2.5yrs and recently a 111 call out Doctor said her lack of taste buds were down to B12 D. ???

shaws profile image
shawsAdministrator in reply to Coastwalker

My Mother had P.A. and had injections for years until her GP told her 'your bloods fine now you need no more injections'. She got stomach cancer and died all due to no injections. We are not supposed to know more than doctors but in the end we do.

scorpiojo profile image
scorpiojo in reply to shaws

So sorry to hear this Shaws... Big hugs

Coastwalker profile image
Coastwalker in reply to shaws

Your poor Mum shaws, so wrong, many have their shots withdrawn. Similar happens with Low Thyroid, odd how most illness are linked to iron/vitamin/mineral/gut deficiency's and hormonal imbalances.

shaws profile image
shawsAdministrator in reply to Coastwalker

To think my sister and I thought that was 'good' that she needed no more injections as she was 'recovered'. Now I have PA I do know what's what.

Coastwalker profile image
Coastwalker in reply to shaws

Recovered ? It is a joke and still it goes on today.

We live and learn shaws, (I get told,) usually only when it happens to ourselves we then completely understand, but looking back to those members of my family that have been harmed and even caused death, still makes me so cross, (and more) as it needn't have happened, but still it goes on and many are still suffering and they need not be.

Today we had a Labour man come round with a petition asking us to sign for more money to help NHS, I hesitated to sign, then said 'but it is the vaccines and prescribed pills that is causing many to end up in hospital in the first place' This man totally agreed and said he knew exactly where I was coming from, we signed his petition as we agreed that Emergency (all departments) are the best part of the NHS and do need more help to sort out the mess it is in. Though it is good to know that more people in the neighborhood are aware of what is really going on.

elaine2447 profile image
elaine2447 in reply to Coastwalker

Very sad to be wise after the event but as shaws said not too late for you. I use this particular one amazon.co.uk/gp/product/B01...

The recent Medicheck test showed it was top of the range and despite it containing folic acid it showed folate and ferritin very low but "within the normal range"! Bit of a puzzle but I do have antibodies 10 x the high range so that maybe why.

shaws profile image
shawsAdministrator in reply to elaine2447

I have just read that even antibodies aren't a positive for a diagnosis but this is a link and I'd ask GP for a yearly test.

patient.info/doctor/pernici...

elaine2447 profile image
elaine2447 in reply to shaws

Thanks for the link. It's a mine field! I have been badly let down by GP surgery which is not uncommon of course, and private endo so am struggling on my own and not just with thyroid problem.

Coastwalker profile image
Coastwalker in reply to elaine2447

Thank You for your link elaine2447.

Pastille profile image
Pastille

Thankyou for that. After watching it I am sure my dad who has now passed on most probably had B12 deficiency for years undiagnosed. I am wondering is malabsorbtion generally associated with thyroid probs? I'm hypo and have just ordered some B12 on line

shaws profile image
shawsAdministrator in reply to Pastille

Did you have a blood test for B12 so you'd have an idea of your result? Also Vit D at the same time. Your GP should do these.

Pastille profile image
Pastille in reply to shaws

No I haven't had the test for B12 but I dread asking the doctor and then facing the nurse as well, its not easy. Also I just thought because it is harmless then adding 500mg a day wouldn't harm?? I don't feel like I can carry on like this much longer you see :( and 500 doesn't seem like a lot compared to what some people take so I thought if it did show any improvement then I would continue?

shaws profile image
shawsAdministrator in reply to Pastille

I would just go for 1,000 initially and remember to get the sublingual,methylcobalamin. I find Amazon best as they have a selection at a reasonable cost. I went into Boots yesterday, they don't do methylcobalamin.

healthunlocked.com/thyroidu...

hellybaybee profile image
hellybaybee

Thank you for this! Was recently told I have B12 deficiency and all of this absolutely resonates with me... makes me realise that what I feel isn't in my head. The most confusing one for me was the memory loss and inability to concentrate because I went from getting excellent exam results (my alevels were in high 90s to 100%) to just passing/just failing. I would get the concepts as they were explained to me but my memory is awful! The pins and needles, pains and weakness is horrendous but at least you can explain that. So glad I got a private blood test as I don't think it would have been found otherwise.

HLAB35 profile image
HLAB35

Brilliant, thanks for this. I had a feeling something like this must have been going on as I've been seeing the neurological signs of low B12 in elderly relatives and yet their blood results were 'normal'. N.B Their generation eat a lot of folic acid fortified bread and cereals. Maybe if you suspect low B12 it's best to stay off the folic acid for a while to get a proper blood result - that's a big ask for people who are set in their ways over diet. Synthetic folic acid is a bit rubbish anyway because we have to methylate it ourselves and a significant minority of people can't even do that.

shaws profile image
shawsAdministrator in reply to HLAB35

The consequences of a deficiency are catastrophic and I know of a couple of people, because they've reached an advanced age are automatically diagnosed as 'dementia' when it could well be low B12, particularly a few months earlier they were going about their daily business with no apparent problems

HLAB35 profile image
HLAB35 in reply to shaws

I agree, and the cost to the health service for keeping someone in a hospital bed after a fall is huge compared to the relative (tiny) cost for preventative treatment.

scorpiojo profile image
scorpiojo

Thanks Shaws for sharing this again.. Is there a link to this on utube, so that I can send it to people that are not on here? Thanks... Jo

shaws profile image
shawsAdministrator in reply to scorpiojo

youtube.com/watch?v=BvEizyp...

This is another story about another doctor who was misdiagnosed.

doctorabel.us/b12/a-doctors...

shaws profile image
shawsAdministrator in reply to shaws

I couldn't put the link for the video as it kept reverting to a video but you can pick it up from below I think:

youtube.com/

scorpiojo profile image
scorpiojo in reply to shaws

Thanks Shaws... I like it because it talks about the many different symptoms due to low B12.... The different wrong diagnosis etc is also good... I think that giving my GP practice a copy of Martyn Hoopers book plus the main nurse's sister in Devon having to start jabs around the same time as mine, really helped... Maybe she read it not the GP... But in late November I got a call from the receptionist saying I was due a jab, I said No I had one in Oct.... She said The nurse has put You need them for life.... I said Sadly yes, but the NHS only give you one every 3months, so if I come in now I'll have waited in the waiting room with people with bugs for nothing... I actually cancelled my appt online rather than take her time up, and had the jab on the 4th Jan!! I haven't disclosed I take a jab myself anyway because I can do without the drama.... But I was at that point of that call Thrilled thinking I'm one issue down ACKNOWLEDGMENT... Sadly on the 3rd Jan was when the Endo wanted to take me off T3 and as you know via my posted results, that's about money not about being treated... He even quoted because my B12 was now being looked after my Thyroid maybe ok so he'd try to take me off T3! ... I'm battling with how to approach this, as on here folk have said I'm under medicated re Thyroid and the ft stuff and ranges goes over my head as I just can't get the complicated stuff... I owe this board so much, because without the Blue Horizon ref etc I'd be so much worse... Thanks again 😊

shaws profile image
shawsAdministrator in reply to scorpiojo

I couldn't in any way go back to levothyroxine neither would my husband want me to as he had to take the brunt of a very unwell wife and he was terrified at times as I had the most awful palpitations as well as stiffness in muscles/joints. I was in an out of A&E like a yo-yo. Dont even need to go to the doctors now. :) unless of course I am at death's door :)

shaws profile image
shawsAdministrator in reply to scorpiojo

Refuse and say 'if I am being denied because of the extortionate cost on the only licenced one -that's not my fault and why should I suffer. Please prescribe for me on a named-patient basis (Cytomel I think it is) because I have to have T3. It has improved my health and I am not returning to a miserable ill-health caused by being denied T3.

thyroiduk.org.uk/tuk/treatm...

thyroiduk.org.uk/tuk/treatm...

shaws profile image
shawsAdministrator in reply to scorpiojo

I am on completely optimal medication and feel well. How can he suggest that my B12 looks after my thyroid hormones - I have P.A. and cannot live without B12, so how can B12 improve my thyroid hormones. Why cannot they tell the truth, the whole truth and nothing but the truth that they are under strict order to no longer prescribe T3, despite new research showing that if on T4 only the addition of T3 helps many patients. The NHS can also source cheaper T3's if they were interested in their bills.

Instead of 'ring-a-ring of roses'. we can read and on the forum we get info from all members - wool cannot be pulled over our eyes any longer.

scorpiojo profile image
scorpiojo in reply to shaws

It just shows a Mercedes Benz Ad nothing follows... 😞 x

scorpiojo profile image
scorpiojo

What concerns me about this as we get our T3 .... Is what if supply stops abroad etc and the moral thing and it's what I said to him/Endo Would you wrestle a person off of their Insulin? Because this is the same with T3 and you know it.... I've graduated to the Consultant himself as I'd given his under study a lecture similar in August... I'm sure they put me with the big guy to hand over the slam dunk... Wrong tactic, because it has distressed me and wears me out with worry, but I'll die in a fight... It's the bitch in me.... 😊

shaws profile image
shawsAdministrator in reply to scorpiojo

Oh - they will go anywhere to avoid an angry and irate woman. The thing is I think they know we are in the right because more of us are more educated than many doctors or endocrinologist now - experience is a great thing, especially bad ones :) who are on this forum . At least we are aware that there is a life beyond the TSH result and need optimum thyroid hormones to function normally - whatever it may be, i.e. T4, T4/T3. T3 or NDT. We also know our vitamins/minerals need to be optimum too particularly B12 and Vit D. :) :)

webar4780 profile image
webar4780

Oh my goodness! Thank you so much for posting the link for B12 deficiency.... Your posting of this valuable video information can only be of enormous benefit in society. We are very fortunate to have now been educated on the symptoms of B12 deficiency and will surely be vigilant if/when we encounter symptoms ourselves and or in other's. Thank you shaws

shaws profile image
shawsAdministrator in reply to webar4780

Marz is the one to thank as she is 'expert' in B12 deficiency having had nerve damage due to not being diagnosed. Thank you as well.

Marz profile image
Marz in reply to shaws

Far from being an * expert * - shaws - think we need to pop across to the PAS forum for details 😊

I think it is good we keep re-posting important links for new people and as reminders for us all. There was a time when I was posting B12 links often each day.

mistydog profile image
mistydog

Me, my husband, my father in law, we have definitely all got this. Husband had B12 checked last week, was 300 AND he's supplementing. Nothing said. I'm getting hold of the results soon.

shaws profile image
shawsAdministrator in reply to mistydog

To try to prevent dementia or Alzeimers aim for B12 around 1,000 by taking methylcobalamin B12 sublingual. If you haven't read this today, it's very worthwhile listening too about half hour and begins after the first 4 minutes.

healthunlocked.com/thyroidu.......

mistydog profile image
mistydog in reply to shaws

Thanks - we already take 5,000 iu Jarrows. FIL already has dementia, looking at this, it looks like it was triggered by the Nitrous oxide when he had a tumour removed. It might be reversible, might be too late. We are going to speak to his doctor and get them to do tests.

shaws profile image
shawsAdministrator in reply to mistydog

I hope everything goes well at least you can prevent anything getting worse. I don't think doctors are aware of B12 deficiencies either. Do you?

mistydog profile image
mistydog in reply to shaws

Pretty sure ours don't have much of a clue, and I have no respect for the in-laws' doctor, they didn't even spot the dementia, he has to go to the surgery every 3 months. He has always been a bit off the wall, but he doesn't really know who we are now. We visited just before Christmas and he treated us like some visitors that were invited by his wife. So sad.

shaws profile image
shawsAdministrator in reply to mistydog

It is sad and it is irreversible if damage has already been caused although supplement will protect what's left, I believe.

Dreamer12 profile image
Dreamer12

Fascinating thank you for posting 😀

Lrhsal profile image
Lrhsal

This is very interesting. I have always said that stress goes to my stomach. I am having B,12 injections x 6 over 2 weeks and levothyroxine increased to 125mg. I also take 5mg folic acid. I have been on citalopram 20mg for 3 years and also take omeprozole daily.

shaws profile image
shawsAdministrator in reply to Lrhsal

I am not medically qualified but your B12 must have been seriously low to have injections so close together. I have also read that taking folic acid can mask deficiencies in B12. Our B12 has to be towards 1,000 as as lower than 500 may be the cause of alzeimers/dementia. Omeprozole I know they prescribe for stomach problems, but if hypo is the problem it is usually due to low acid rather than high but symptoms are so similar so GPs prescribe antacids.

This is a link - just for information - and most of us with the following condtion treat it differently than high acid.

scdlifestyle.com/2012/06/hy...

chriskresser.com/the-thyroi...

Another symptom of hypothyroidism is depression which is usually caused by our T3 being too low. It is T3 that is required in the billions of receptor cells in our bodies. The dose of levothyroxine (T4) we take could be too low to provide sufficient T3. T4 is the inactive hormone and converts to T3. our brain contains the most T3 receptor cells .

Do not change any of your medications without serious consideration. Doctors are apt to treat symptoms as 'apart' from thyroid instead of knowing them but they are doing what they have told and don't know any symptoms.

thyroiduk.org.uk/tuk/about_...

If you can get a print-out of your blood test results with the ranges and post on a new question for comments.

If you've not had one for a while ask GP to check TSH, T4, T3, Free T4, Free T3, B12, Vit D, iron, ferritin and folate. If he wont as many believe that only TSH and T4 is necessary but not if we want to feel well. Thyroiduk.org.uk has a list of recommended labs and you can have a private blood test if doctor isn't in agreement.

Blood tests for thyroid hormones should be the eariest possible, fasting (you can drink water). Also leave approx 24 hours between your last dose of levo and the test and take afterwards.

I have no medical qualifications but had undiagnosed/untreated hypothyroidism.

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