Self injecting with B12: I have decided... - Pernicious Anaemi...

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Self injecting with B12

Vonni7
Vonni7
•61 Replies

I have decided, having just come out of yet another fatigue episode with attendant symptoms! that I will try a course of self injected B12 ! i have zero faith in my GP so not prepared to go through that rigmarole - been there before! I have also started another symptom with is eye socket pain which I have not had before but which I wonder could be related? I have tried one of the links to a german pharmacy given on this site but didn't manage to complete the order! are there any english language sites to order from. I would so appreciate advice on dosage. Bearing in mind my neurological smptoms I am wondering whether to start with the "loading dose" of every other day for two weeks then drop down to weekly. or monthly? Would really appreciate some guidance on where to buy and how to adminster - thanks! Vonni

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fbirder
fbirder

Have you received any B12 shots from your GP?

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fbirder
fbirder

Ah! I’ve just seen your previous post where your Active B12 was high. Nowhere near the bottom of the range.

I’m not at all sure why you think that B12 injections will help. Yo7 have lots and lots of B12 in your blood. And it’s in the format that can enter the cells. Sticking more B12 in your blood is extremely unlikely to help in any way.

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Vonni7
Vonni7
in reply to fbirder

No I haven't received any b12 shots from my doc - I have given up on her. She told me that my high MCV and MCH blood levels were "nothing" - it was only when I started investigating that I realised the implication of this!. and was sent me down the B12 deficiency/treatment route. As I understand it the level of B12 in your blood is not the prime indicator but your clinical symptoms are! Fatigue, low energy, breathlessness, dizziness and balance problems, nerve pain, etc etc combined with having an MTHFR gene mutation and it's attendant connection to B12 deficiency. And of course, we are not all the same! what is the correct range/requirement for one might not be the correct range/requirement for another. This from the BMJ seems to confirm my thinking......"if the clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between the tests and the clinical features" One other point - I have been taking a B12 supplement for years (clearly not effective!) but was told not to take it for a week prior to the blood test - I have since been told that is not long enough? so I don't know if that influenced the result.

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fbirder
fbirder
in reply to Vonni7

But you are absorbing B12. Otherwise your Active B12 levels wouldn’t be so high.

Your clinical symptoms could be caused by any number of conditions. Have you investigated those? You’ve obviously been treating them with B12 in some form. And that form is getting absorbed. But it doesn’t seem to be helping those symptoms. What difference could injections make?

If you think that MTHFR mutations might be having some effect then taking B12 won’t make any difference. MTHFR mutations have no impact on a B12 deficiency. You could try supplementing with methylfolate. But unless you are homozygous for the C677T mutation then it’s unlikely to be any better than folic acid.

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Vonni7
Vonni7
in reply to fbirder

Thanks fbirder - yes over the years had every test under the sun for the fatigue/energy symptoms - the dizziness and balance problems are more recent - but again had tests - doc says nothing wrong! said I might have ME!! or depression!! i understood that an mthfr mutation affected your B12 status - even a heterozygous C677T - albeit to a lesser degree. I thought that an injection would give me a higher dose - (to see if that alleviated my symptoms) if I take a higher dose of the sublingual I am taking it would cost me a fortune! One last point....Surely everybody cannot have the same b12 requirement?

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fbirder
fbirder
in reply to Vonni7

Nope. MTHFR does not affect B12 status in the slightest.

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Polaris
Polaris
in reply to Vonni7

You are quite right Vonni! Your symptoms (neuro) and history (40% of Hashi's patients also have B12D) ARE paramount and, in any case, supplementing before testing would have skewed serum and active B12 results.

Dutch recommendations:

"In view of the progressive nature and severity of the disorder, and the irreversibility of some clinical phenomena, we believe that in case of doubt, we should proceed with Treatment. Waiting is not a proven option.The treatment should be ' aggressive ' when a clear neurological complaint."

I'm sorry you had problems with the German links - I don't know of any English sources of Hydroxocobalamin, but will have a look for other HU links that might help. I do remember that some of us had problems with ordering but they eventually went through,

PS I started off injecting every other day 1ml. Hydroxocobalamin but had more noticeable results after switching to every day but, as you say, we all have different responses

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Vonni7
Vonni7
in reply to Polaris

Thanks Polaris! I seem to be adding symptoms to my list! night sweating and pain in my eye socket - do you think either of those could be relevant? i will try again with the german site - problem is I don't use paypal (don't ask! too complicated) and there was no option to use my credit or debit card! thanks for your help!

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Polaris
Polaris
in reply to Vonni7

Oh yes - night sweating and the hot summer unbearable, as well as changes in vision, eye problems generally. You won't regret taking control. It's been quite a slow process but all symptoms have immensely improved. I do a lot of reading and have noticed eyes are clearer and less sore after eating blueberries regularly - good source of lutein and zeaxanthin 🤗

So much easier with PayPal but I already used this for buying on eBay so was no problem.

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Vonni7
Vonni7
in reply to Polaris

Oh the night sweats weren't in the summer Polaris - they have just started in the last few weeks! well end of summer I suppose but they didn't happen cos of the heat which made me wonder if they were relevant! Blueberries on the list! Thanks again.

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wedgewood
wedgewood
in reply to Vonni7

If you deal with Amazon , you can usually use Amazon pay .

You can also buy B12 ampoules from Amazon.de in English . Search for” Rotexmedica B12 depot” for Hydroxocobalamin. You need to buy from the first pharmacy that comes up . The other 21 do not ship to U.K. .

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Vonni7
Vonni7
in reply to wedgewood

thank you so much Wedgwood! I'll give that a go - and I understand from Polaris that you have to buy all the bits and pieces (syringe etc) from another source (in Uk I think) so I'll look at that link!

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wedgewood
wedgewood
in reply to Vonni7

Medisave.co.uk

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Vonni7
Vonni7
in reply to wedgewood

Thanks wedgewood!

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deniseinmilden
deniseinmilden
in reply to wedgewood

Thank you wedgewood

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deniseinmilden
deniseinmilden

Dear Vonni,

Welcome back to this group! Good to hear from you again.

For good advice on SI and sourcing supplies, please see replies from wedgewood and for more information on active B12 please see replies by Gambit62

There are lots of us who self treat to be well, even if it doesn't follow the scientific papers that are currently readily available. There must be more knowledge out there because the drugs are produced and marketed in a way that would not be possible without proper testing and documentation - it's just this information must be being kept secret by the pharmaceutical companies. I hope that in time it is more available to us all and is used to educate the health professionals.

I'd forgotten about eye socket pain but yes, I used to get it. It felt like I'd been kicked in the socket without the eyeball being particularly affected unless I looked to the extremes of my field of vision. Very wierd. 3 years of daily SI and supporting supplements has banished it beyond immediate memory. This treatment has also meant that my memory is back and I can remember it!! 😁

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Vonni7
Vonni7
in reply to deniseinmilden

Oh Denise - I can't tell you how good it was to read your post! an realise that my active B12 blood test was not the be all and end all!! Thank you so much for your helpful encouraging message - I will follow up the two links you sent. So sounds like the eye pain could be part of it! another thing I have noticed recently is night sweats - had a quick check and think that could be relevant too! So I notice you refer to your SI AND supporting supplements - which supplements? Thanks once again for your support1

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deniseinmilden
deniseinmilden
in reply to Vonni7

I think our replies crossed! 😁

Please see below for the supporting supplements - a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron.

You can Google these to see what you are dealing with and what food and drink sources you might like.

It's a pain not having PayPal and I'm sorry but I don't know how you'd get round it - hopefully someone else can help with that one. If they don't see it here it might be worth starting another post with that question as the title.

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deniseinmilden
deniseinmilden
in reply to Vonni7

Re night sweating - when I was really ill it used to be terrible and I thought that now I don't do it was just because I had made lots of changes to mitigate it... But now I think about it it's only really stopped more recently, now that I get the treatment I need.

Wow! Another tick "ticked"!

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Vonni7
Vonni7
in reply to deniseinmilden

Interesting! I hadn't really put it together with this b12 problem and thought at first my new duvet was too warm!! then another day I thought it was to do with my blood sugar level! just the other day I must have read something and the penny dropped! so many dots joining up - looking forward to feeling better (gradually!)

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deniseinmilden
deniseinmilden

Re dose rate, it's hard to suggest anything because we are all different. My feeling is that treatment to keep your symptoms at bay is best as symptoms are your body's way of telling you that it needs something.

The every other day loading doses are what is recommended by the NHS but in hind sight if I was starting again I would probably try weekly doses like the Dutch do as I think it is less of a shock to the system, especially if it is autoimmune and therefore easily upset.

I know you are very sensible but ought to issue the standard caution of "first jabs should be done at a place where you can get treatment in the extremely rare event of an allergic reaction".

Otherwise B12 is extremely safe and is worth trying - if only as a safe option to rule out one of the causes of your horrible symptoms.

I'm sure you are already aware that the processes that B12 is involved with use up many other vitamins and minerals and so many people benefit from taking a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron with their extra B12.

Well done for deciding to take control of your life back. Doing your own jabs is easier than the thought of it, much easier than getting everything together and much, much easier than fighting with health professionals!! 😁

Go girl! Good luck! 🍀

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Vonni7
Vonni7
in reply to deniseinmilden

Thanks Denise - I'll do the first injection at home during the week when I can run round the corner to the doc's if I have a problem! Once a week sounds a good starter - I'll go for that! I agree - it's worth a try if only to rule out other possible causes! Thanks for info on supplements. An finally and big fat YES to your last point.....much much easier than fighting with the health professionals! Onward!

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Foggyme
FoggymeAdministrator
in reply to Vonni7

Vonni7. Please do not take potassium supplements unless under direct medical supervision. Potassium is very finely balanced and over-supplementation can result in cardiac arrest. Saying this not to frighten you but rather because many people do not know how dangerous it can be.

Low potassium levels due to B12 injections only occur when treatment is first commenced - and then only when macrocytic anaemia is present (potassium is used up quickly to repair red blood cells). Potassium requirements return to, or so after this initial phase.

However, when absorption problems are present (as they are for most) then eating a diet that is rich in potassium can help. Lots of ideas on the internet.

If you are concerned that you may have postsssium deficiency, best to ask your GP to test your potassium levels. They can then prescribe an appropriate dose of potassium supplements and then re-test your potassium level once they have been taken (usually for a short period only - unless you have an underlying medical condition or take certain medications that that affect potassium levels).

Good luck

👍

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Vonni7
Vonni7
in reply to Foggyme

Thank you so much Foggyme for this info! I do have mild macrocytosis but going on what you said any deficiency is quickly restored after starting treatment, so perhaps a couple more bananas will suffice!

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Foggyme
FoggymeAdministrator
in reply to Vonni7

Hi Vonni7. If you're just starting on B12 injections, then yes, your potassium level may drop once you start.

If you are already having injections, then low or deficient folate may be the cause of your slight macrocytosis...in which case, take 400mcg of folic acid daily.

If starting or re-commencing Injections after a break...yep...eat a diet rich in potassium. Here's a post that contains a link to a nutrient counter that can help you monitor potassium intake (covers a wide range of nutrients, so really):

healthunlocked.com/pasoc/po...

Might be a good idea to look up the symptoms of potassium deficiency on the Internet - and if these symptoms occur, then ask your GP to test your potassium levels to make sure they are not dropping dangerously low (this would need to be done immediately - no waiting for a two week appointment 😉).

Good.luck and post again if you need more help 👍

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Vonni7
Vonni7
in reply to Foggyme

Thanks again Foggyme - haven't started the injections yet so macrocytosis not caused by low folate. Will contact you again if I have any queries - so great to have such brilliant help!

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Foggyme
FoggymeAdministrator
in reply to Vonni7

Not quite sure what you mean Vonni7. Low or deficient folate can be present at the same time as B12 deficiency, irrespective of whether injections have been given.

Macrocytosis can caused by folate deficiency, rather than B12 deficiency. And as you have a high Active B12 level, then folate deficiency may be the cause of your macrocytosis and, incidentally, cause symptoms very similar to the symptoms of B12 deficiency.

But sorry, don't have time right now to read your previous posts, so perhaps you've had folate tested already and know that this is not a problem?

👍

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Vonni7
Vonni7
in reply to Foggyme

Oh sorry for the confusion Foggyme - I was told that my folate level was Ok (18.13ug/L in range of 2.91 - 50.00) so discounted it - having said that I was told my B12 level was OK? but I had been supplementing for some time and was only told to stop taking it for a week so wonder if that skewed the result! and as I said - i have so many symptoms! all rather difficult to comprehend!

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Vonni7
Vonni7
in reply to Foggyme

I have just realised that I have also been taking a Folate supplement - would that skew the blood test too?

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Gambit62
Gambit62Administrator
in reply to Vonni7

folate isn't stored in the body so levels are very responsive to supplementation - so recent supplementation will have masked an absorption problem.

B12 supplementation - particularly with high dose oral - can mask an absorption problem. Both serum B12 and active B12 are reasonable tests for identifying a B12 absorption problem but only really if levels are being monitored and showing a consistent drop.

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Vonni7
Vonni7
in reply to Gambit62

Thank you so much for this information Gambit62 - this was the first time I had had and active b12 test - previously it had been a serum b12 test - so didn't know how to compare them?

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Gambit62
Gambit62Administrator
in reply to Vonni7

generally speaking active B12 will be about 20%of serum... but that is averages and people aren't necessarily averages. You also need to make sure that the same units of measurement are being used. If not you need to convert using the relevant multiplier

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Foggyme
FoggymeAdministrator
in reply to Vonni7

Hi Vonni7. What Gambit62 says...and...just wondering...have you explored other potential causes for your symptoms. Symptoms of B12 deficiency can also be the symptoms of many other medical conditions, thyroid being a prime example.

Worth thinking about.

👍

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Vonni7
Vonni7
in reply to Foggyme

yes been down many roads trying to find a cause for my symptoms - thyroid being one - adrenal fatigue another - it has gone on for years! I do have hashimotos but on medication for that so that is why i am exploring B12 as a possible explanation!

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Foggyme
FoggymeAdministrator
in reply to Vonni7

Ah ha...autoimmune hashimotos...assuming that is well controlled...autoimmune conditions often arrive in clusters, so just a thought...have you had auto-antibodies screened to see you have any other underlying autoimmune condition?

Asking because that's what happened to me 🙄.

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Vonni7
Vonni7
in reply to Foggyme

i didn't know about that! what is the blood test called? - an auto-antibodies screen?

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Foggyme
FoggymeAdministrator
in reply to Vonni7

Yes...just ask your doctor if they'll do an auto-antibody screen - they'll know what you mean. And in view of your long-term ongoing symptoms and the fact that you have one autoimmune condition, they shouldn't object (it's something they ought to have done anyway 😉).

GP will do a basic screen and if any of those results are raised then it’s usual to refer to a rheumatologist who can do further more complex blood tests and investigations.

Also worth asking to have blood tests for inflammatory markers CRP and ESR if these have not been done. If raised, these indicate that some sort of inflammatory process is taking place. If so, this would need further investigation to identify a specific cause.

Here's some information about auto-antibodies:

labtestsonline.org.uk/tests...

labtestsonline.org.uk/tests... (most of these are more complex and would only be necessary via a rheumatologist if GP tests show raised auto-antibodies)

Not suggesting that you do have another autoimmune condition - just that it's a possibility and so best to rule out. If only for your own peace of mind.

Good luck.

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Vonni7
Vonni7
in reply to Foggyme

That's all massively helpful! Thank you so much! off to bed now - night night!

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Foggyme
FoggymeAdministrator
in reply to Vonni7

Night night to you too. Let us know how it goes 😉.

I'm of as well 🛌 💤💤

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deniseinmilden
deniseinmilden
in reply to Foggyme

Thank you very much @Foggyme for all your help with this and for suggesting this test - I'd had a similar one when I was 14 which showed I had an autoimmune condition.

(Looking back it's kind of funny - they told me that I had an "Auto Immune Disease" which went into my school notes to explain why I was so ill all the time. It was at the time that AIDS was at the forefront of the news, someone saw it and the kids put 2+2 together, made 3 and treated me like a leper, avoiding me and anything I came into contact with. Until then I loved school and hated being too ill to go. After that being away was a Godsend! 😁 I taught myself at home and got the best results ever produced at the school - says something!!).

I couldn't get help at the time because they were unsure of my Mum's mental health and despite myriad other tests and requests for something along those lines since I have been told it wasn't available. Large sections of my notes were lost and I haven't been able to refer back to it. It definitely happened though because you don't forget being treated like you have AIDS when it was a deadly infection!

If I get more ill again it is something I will look into because I know the Rheumatology department at our local hospital is good, having taken a friend to lots of their clinics.

Many thanks.

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Foggyme
FoggymeAdministrator
in reply to deniseinmilden

Hi deniseinmilden. Really interesting what you say about previously being diagnosed with an autoimmune condition when you were young.

Does make me wonder if all your troubles with controlling your B12 deficiency might possibly have another cause...flares from a 'misplaced and forgotten' underlying autoimmune condition. So an ah ha...or more of a hmm...moment 🤔.

Antibody activity from such a condition can rise and fall, depending on disease activity, so your idea of asking your GP for for an auto-antibody screening test if you become unwell again, is a good one 😉.

Bummer about school...like to think that things are more enlightened nowadays...but not so sure that things are yet as enlightened as they should be.

But hey...you've done okay, despite the cruel setbacks and loss of something you loved... more than okay, in fact.

Much the same for me...bullied (for different reasons), left school just 15, trained to be a nurse, then did O and A levels at night-school, then went to Uni at the age of 32 (best thing I ever did 😉). But goodness me...school was a nightmare.

Anyway...be really interested to hear the about one if you do get antibodies tested.

I was undiagnosed for many years (useless GP ignored test results and insisted on ME, CFS, fibromyalgia for years) and I've since realised that many apparently unconnected health 'bumps' were in fact all connected via underlying autoimmune condition 🤬.

So...will watch your space 😉😀 xx

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deniseinmilden
deniseinmilden
in reply to Foggyme

(As always) Fantastic to hear your ideas on the subject and a bit of your background too. I know it's corny but it does seem to be true that adversity that doesn't kill you makes you stronger!

I'm an odd little soul but in it's way it's helped me to try to be kind and understanding when people don't feel on form and I value that.

You have learnt so much and have a patience and ability to be gently persuasive that I hugely admire. I have infinite respect for you.

I think you are better for your life as it has been and should be very proud of yourself and have no regrets but I guess you wonder what would have been if you hadn't had the challenges? Looking back I wouldn't swap mine for an easier life (well maybe I'd have chosen not to have had the CFS/ME dismissal, but hey!) because I'm mostly happy with who I am now, even if I wish being here wasn't quite such a struggle!! 😁

I'm fascinated by what you say about the autoimmune flare ups. That does really explain things. I run on a roller-coaster of minor remission and relapse phases all the time and then that gets compounded by my mistakes and external influences beyond my control. And then that seems to be within a much bigger scale of relapse and remission cycles which are also influenced by more significant life changing stressers.

I'm frequently aware of the autoimmune "nonsense" and try to manage my thinking and physical impacts on my body because anything can trigger it! E.g. I mustn't change my diet too much and try to introduce things gradually (I learnt that this can be helpful from looking after my farm animals and found it's really good for my autoimmune body too). I mustn't get suddenly upset and have to dampen down my emotional reactions to things.

I messed up on Thursday: my cats went to the vets - Timmy had a couple of teeth out and the girls were spayed - and I wasn't concentrating on me when I picked them up and I let myself go into shock from seeing them so compromised. That has had me mostly stuck in bed for 3 days and ended a remission phase because of a few minutes inattention! I could feel my immune system fighting my body: it's just like having an adverse reaction to a vaccination or accidentally having something slightly poisonous. You just have to wait for it to all calm down. Ibuprofen helps. It sends me straight to sleep and I think a degree of repair happens then. It helps me coz I'm spark-out and so stop suffering!! 😁 👍

Thank you for reading this and all your care and thoughts on it. It so helps!

Good luck to you and wishing you many happy remissions!! x x x

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Vonni7
Vonni7
in reply to Foggyme

morning Foggyme! I don't want to be a nuisance but I would be grateful if you could give me your opinion on my thyroid story! as I said for years I have been trying o find the cause of my fatigue, weight problem etc etc and was told I didn't have a thyroid problem. However when I moved to New Zealand my doc there diignosed me with Hashimotos and put me on natural thyroid - she was a very holistic doc and always listened to the patient! I felt some benefit initially but still the fatigue and other symptoms contined (intermittently) so I discontinued the natural thyroid. By that time I had moved to Australia and there I was put on T3 - not long after that I moved to UK (last year) and moved to Cornwall this year where I registered with a local doc. She is anything but holistic! she ran some tests and told me everything was fine and I didn't have a thyroid problem - she only tested tsh - and as I mentioned in an earlier post - she dismissed the high MCV and MCH. i ahd some private tests done with Medicheck and the doc there said I didn't have a thyroid problem cos the antibodies were at a low level. Some years ago I cut out gluten which had a noticeable effect on the antibody level and I avoid all chemicals (as much as I can) buy organic food etc etc I have read Isabella Wentz book and also Paul Robinson's book on T3. the doc at Medicheck told me my T3 level was too high and I should reduce my medication - which I have done. I was taking 50mcg and I have reduced it to 25mcg - having a quick look at Paul Robinson's book I am not sure that was the right thing to do - but to be honest I haven't noticed a lot of difference - which is why I am pursuing the b12 option. I doubt my doc will run the autoantibody test - as she doesn't even think I have a thyroid problem. She also refused to give me a private prescription for the T3 that I buy online as I wanted to buy it from Germany and not Mexico as I currently do, but need a prescription for that. Her only suggestion to me was to take a course of antidepressants! I have absolutey zero faith in this doctor! I shall get the autoantibodies test done through Medicheck. Sorry for the length of this post! but these things have been bothering me for a while and this forum is so helpful!

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Polaris
Polaris
in reply to Vonni7

Hi Vonni. There seems to be the usual battle here over one Active 12 test (skewed by B12 supplementation) v. symptoms, with the added complication of Hashimoto's and being over the age of 60 yrs. Here are further thoughts as someone with Hashimoto's/PA/B12def. together with three other family members. I've also done my own extensive research and been a member of both PAS/TUK forums for six years:

Re. Hashimoto's TD, whilst some of your symptoms are similar to Hashi's, many are not - indeed some are opposite, e.g. night sweating, losing weight and, although your active B12 which is supposed to show whether B12 is absorbed, was high, it will definitely have been skewed by supplementing B12. (BMJ document and other research confirm )

Those of us with inadequately treated thyroid disease end up very cold, put on weight easily, constipated and suffer from puffy face. dry skin and fatigue, but are usually still able to keep our balance, hair, hold down a job and, most important of all, symptoms are usually reversible with adequate treatment, though like B12, hard to get 😳. Having both conditions as we age makes it even more urgent to be adequately treated to avoid the neuro/physchiatric problems usually associated with age let alone two autoimmune diseases!

As someone who several years ago was severely hypothyroid before diagnosis and treatment, I would say the fatigue and physical symptoms, though serious and debilitating (I could still work), are nowhere near the same or as serious as the crippling fatigue of the neuro/psychiatric disease that is PA/B12 deficiency, inadequately treated.

PA/B12 left too long is so serious as to eventually permanently affect the myelin surrounding nerves, leaving those affected unable to walk, think or speak straight and even committed to psychiatric units for psychosis, auditory hallucinations, or left with vascular disease, dementia and the risk of various misdiagnoses such as MS, Parkinson's, MND.....

As all the research shows, PA/B12D. becomes more likely over the age of 60, (especially with Hashimoto's), owing to the increased likelihood of gastric atrophy (common and often silent in thyroid disease), which makes it harder to absorb B12. 'Diogenes' aka Dr John Midgley, scientist and advisor to TUK posted this research a while ago. It highlights the progression of autoimmune thyroid disease through the deterioration of gastric mucosa, leading to B12def./PA :

journal.frontiersin.org/art...

I, personally, found B12 symptoms to be far more subtle than Hashi's. They creep up slowly over time and symptoms may not be recognised (may be put down to the aging process) or tested until the lack of sufficient B12 begins to affect the myelin surrounding the nerves of the spinal cord thus beginning the more severe neurological symptoms that affect the brain, balance andproprioception, mood, mouth, eyes, ears, muscles, fingers, toes, legs, i.e. the peripheral nerves, eventually raising homocysteine to a dangerous level that risks cardiac and vascular disease, strokes, dementia etc.

........................

PS.

I also found good advice from Izabella Wentz, pharmacist and thyroid specialist 🤗 :

Methylfolate best as if you have MTHFR gene, folic acid is not well absorbed.

Ferritin - def. causes shortness of breath, insomnia - optimal range 90-110 no/ml

Vitamin D - for energy - optimal range 60-80

Zinc - optimal range 70-90 up - deficiency impairs wound healing.

Selenium - 200-400 mcg per day - reduces antibodies and anxiety.

Thiamine (vitamin B1) - fatigue support - 600 milligrams per day.

Important to improve gut health. Remove gluten and, if appropriate, dairy. Eat more protein, limit carbs and increase good fat.

TESTS : TSH, FreeT3, Free T4, Thyroid Peroxidase antibodies (TPO), Thyroglobin antibodies (TG), Reverse T3

Good luck for better health and finding answers Vonni 🙂

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Vonni7
Vonni7
in reply to Polaris

Thank you SO much Polaris for all that great info! A few months ago I had virtually given up and accepted that this was how I had to live and put up with! but since I found this forum I have been really encouraged to try again and pursue other avenues - i.e B12 deficiency! I have fallen over twice in the street this year and really smacked my head on one occasion and the dizziness is most definitely there - not all the time but I notice it at times as well as balance issues! and reading posts on this forum I feel these symptoms are really things I need to address! I was blaming it on septicemia that I had last december! i have only gone on as long as I have cos I live alone and do not have the commitment of a job so I can "shut down" when I get my fatigue episodes and wait for it to pass! but how nice it would be not to have to live like that! the night sweating does not happen every night - and I am not losing weight! I have been overweight for most of my life! Another thing I haven't mentioned but wonder if it is relevant - throughout my life I have had episodes of an excrutiating nerve pain (in my right side) that comes in sort of stabs - nothing will touch it except for anti-epileptic drugs which I won't take! i haven't had an episode for about 18 months now and am keeping my fingers crossed. I have had every test and scan available and no doctor could ever tell me what was causing it! I know it isn't like peripheral neuropathy but when I read about the myelin sheath being affected by b12 deficiency it makes me wonder?! Thank you for the info from Izabella Wentz - I like her and find what she has to say very useful. I couldn't open the link to dr john Midgely. Thanks again polaris! Onward!

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Frank77
Frank77
in reply to Polaris

Thank you Polaris for that most interesting and informative post. I have to say that I am slightly confused by the suggestion by Fbirder (above) that high active B12 means that the stuff is being absorbed normally and that there is point in taking more B12. This is not the impression I get from other contributors on this forum. In my own case I had very high active B12 when it was measured a few months back. This was after supplementing for weeks with sublingual. I am now on a regime of one injection a week plus daily sublingual. I can just about get by on this level of B12 supplementation - though even on this I still have some classic B12 symptoms from time to time. I have no doubt that my active B12 is still very high but I'm afraid I won't be stopping the supplements any time soon.

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Vonni7
Vonni7
in reply to Frank77

Very interesting Frank! i too had been supplementing for a long time with sublingual B12 prior to my blood test and still have a lot of symptoms of B12 deficiency! I think your regime of one injection a week plus daily sublingual could be the way to go for me! Thank you,

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deniseinmilden
deniseinmilden
in reply to Frank77

I know that I would die if I did. My tests show levels off the scale (>2000) but I am only well if I SI with 1.5mg in 1ml hydroxocobalamin every day.

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Foggyme
FoggymeAdministrator
in reply to Vonni7

Hi Vonni7. Afraid I'm a bit of a thyroid dunce so can't really help you on that score. However, see Polaris has left some really good replies for you, so hope that helps.

Also - there's a thyroid forum here on HU and the members there are also extremely knowledgable and always happy to help. Might be worth posting your blood results and questions there. Here's a link to that forum:

healthunlocked.com/thyroiduk

Good luck 👍

1 like
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deniseinmilden
deniseinmilden
in reply to Vonni7

Have you "spoken" to Marz and Helvella on the HU Thyroid forum? They are mega knowledgeable and very helpful - although can be spread a bit thin by all the need for help. Polaris and Gambit62 on here too are very knowledgeable about thyroid problems - and may have "spoken" to you further down about it - I haven't read all the replies.

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Vonni7
Vonni7
in reply to deniseinmilden

Hi Denise - I am going to follow the B12 road for the mo! been down those other roads (thyroid adrenal etc ) for years and still have fatigue etc and more recently balance problems and dizziness. I'll keep in touch!

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deniseinmilden
deniseinmilden
in reply to Vonni7

I think it's very wise of you to do that and am pretty sure that is what your problem is, I was just making sure that you had the thyroid links to help you if you wanted them.

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Polaris
Polaris

Yes, falls and balance problems definitely strong symptoms as was feeling the car was still moving when stationary (proprioception I believe).

Sorry, Vonni, I don't know why I thought you'd lost weight. I'd been supplementing Jarrow's B12 5000 mcg for a while before a sudden fall left me with a black eye, then bad stress/migraine with aura landed me in A&E, with very high BP and a TIA. GP tried to put loss of weight, suppressed TSH down too much thyroxine! In hindsight, I realise this was probably when lack of absorption of B12 had started to take affect and probably raised homocysteine. I later realised blood tests also indicated Microcytic anaemia, which doctors hadn't noticed..... FBirder believes this doesn't indicate B12def. but Sally Pacholok does, although macrocytic anaemia is more usual. Microcytic Anaemia is also mentioned in the link already given. It's a rather long, technical but comprehensive paper and I've posted it again from the original so it should hopefully work now:

frontiersin.org/articles/10...

"Iron Deficiency and PA

Chronic atrophic gastritis is clinically silent in most cases and only a small percentage of patients may complain about dyspeptic symptoms. A well-described clinical feature of thyrogastric syndrome is represented by the presence of an iron-deficient and/or a PA. In fact, it has been demonstrated that an iron-deficient anemia, refractory to oral iron therapy, in patients with HT, may be due to chronic atrophic gastritis (13). The clinical signs of this disease appear after several years of its onset, when the progressive reduction to disappearance of the parietal cells leads to atrophy of the gastric mucosa, impairing the absorption of iron, vitamin B12 (cobalamin), folate, and other nutrients (22). At the physiologic acid pH (1.5–2) of the stomach, ascorbic acid, the most active form of vitamin C, allows iron reduction from the nutritional ferric (Fe +++) to the ferrous form (Fe ++), thus forming a complex that drives the absorption in the upper portion of the small intestine (22).

In the initial phase of the atrophic gastritis, the damage of parietal cells can lead to iron deficiency microcytic anemia as the only clinical sign (38). When the gastric atrophy becomes severe and/or the IFA is no longer produced, even the absorption of cobalamin becomes compromised. Besides hydrochloric acid that promotes the separation of vitamin B12 from food, the parietal cells also produce the IFA that binds cobalamin and pipes it to the distal ileum, where it is absorbed following a binding to specific receptors (39). Vitamin B12 deficiency is responsible for hematologic changes (macrocytic anemia) and specific neurological disorders (paresthesia and neuritis) which are peculiar of PA (22). "

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deniseinmilden
deniseinmilden
in reply to Polaris

Wow, thank you Polaris - super, in depth information and very relevant to us with more obscure problems. That's very helpful to me and rings lots of bells.

Can you get enlarged and small rbcs at the same time or does one cancel out the other? If the latter then that could explain some of my difficulties getting treatment initially. (No anaemia so I "can't be that bad" - Grrrrr!).

Thank you!

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Polaris
Polaris
in reply to deniseinmilden

Hi Denise. I'm certainly no medical expert so could be wrong but I think I remember reading somewhere on the forum that you can have a mixture of both, or incomplete and deformed as in sickle cells?

Hopefully, someone with more knowledge will answer 🙂

1 like
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deniseinmilden
deniseinmilden
in reply to Polaris

Thank you Polaris - that rings a bell with me too! I'd rather your advice based on reality than that of most experts! x

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Vonni7
Vonni7
in reply to Polaris

Thank you once again for such great info - the link is working now so I'll take a look. I have just bought Sally Pachlok's book so will get into that too. i have only read the first few pages but already bells are ringing! Thank you again!

1 like
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Polaris
Polaris

A really good book 🤗 The film about how she came to write it is very informative too.

Reply
Vonni7
Vonni7
in reply to Polaris

Yes I watched it a few days ago and thought it was great and that is what prompted me to buy the book!

1 like
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