Do I self treat now?

Hello - long post ahead.

I posted here last year, prior to seeing a neurologist as I was (and still am having) neuro symptoms: occasional tremor in hands, constant pins and needles in hands and feet, numbness (hands mostly).

I have Hashimotos Thyroiditis and psoriasis. I was diagnosed as B12 deficient in 2010 after decades of symptoms, but mostly flaking nails, dry skin and exhaustion. I was prescribed loading injections then 3 monthly doses but these were stopped in 2012 during my pregnancy. I'd also moved out of the area to a different surgery, and they refused to reinstate my injections once my son was born.

I was diagnosed in 2017 with thyroid disease (again after many years of symptoms, and being ignored). I also had gastritis and was tested for PA but was supplementing heavily with a B12 oral spray. The gastritis was found to be atrophic (gastroscopy) and my IF and parietal cell antibody tests came back negative. Ditto for celiac disease.The specialist suggested my using B12 could have skewed the results for PA.

I've since had another endoscopy and the gastritis remains after 3 years. The results were 'reassuring', whatever that means. Apparently this consultant denies it being atrophic. I was then dismissed back to my doctor, despite having been assured they'd get to the bottom of the problem using a process of deduction. Both times I was told to take Omeprazole, but I didn't as I know that low stomach acid could be the cause of my poor nutrient absorption (I have very low iron levels too, and folate - I now supplement with methylfolate along with iron, Ester C, selenium and magnesium). I've just started a short course of Omeprazole to try and stop my stomach from burning and give it a chance to calm down. I'm getting desperate and natural remedies aren't helping.

I eat well, am not vegetarian, don't smoke or drink.

I paid for private blood tests a few times and the most recent (last summer) showed my active B12 to be high - I was taking a daily sublingual 'melt' of 1000mcg plus an oral spray. Someone on this forum said that meant I definitely do not have PA.

I suggested it as a possibility to my GP due to the neuro symptoms, which started almost a year ago, but she said it wasn't B12 as I don't have enlarged red blood cells. I did give her a lot of printed information as recommended here but she dismissed it.

Unfortunately the GPs in this surgery are quick to suggest anxiety or depression as the cause for most illnesses if you're female and it's incredibly frustrating. I know they're gaslighting me, and I now avoid going there as much as I can. My MRI scan came back clear, and only my copper levels were tested. The neuro has said I have a 'functional neurological disorder' and suggested I look it up online. She also said it couldn't be B12 related, despite not performing any tests.

So. Finally: I'm thinking of trying self injecting to see if there's any improvement in my symptoms. I've noticed I'm exhausted and my nails are starting to flake again. I'm 44. I tried contacting my old surgery to see if I can get hold of my records and see why I was given B12 injections in the first place - this was prior to me supplementing and there may be a clue. But I asked both my new surgery and old one to help and each one is blaming the other for my records going AWOL. It's been over six months and nothing.

Is it worth trying self injecting?

I've completely given up on the doctors locally. It's a very quiet, rural surgery so lack of time isn't the problem. Budget, maybe. There's definitely an 'I don't know much about that, so you must be imagining things' situation.

Apologies for the long post - it's been a very long, complex and frustrating journey and I feel I have to fight every time I see the doctor. I'm having to research so much and am aware that autoimmunity, iron deficiency and other nutrient deficiencies can cause similar symptoms. But the neuro ones seem pretty B12 specific...

[wedgewood]

It is worthwhile trying self-Injections . We know that one cannot overdose on vitamin B12 ( despite my GP telling me that” too much B12 is toxic “ He could not tell me how much was too much , or tell me where the necessary science came from . So I will send you all the info that you need for self-injecting , and leave you to decide . If you decide to go ahead , I would do loading doses ( 6 injections over 2 weeks ) Thereafter an injection every other day until your symptoms fail to improve, as you have neurological symptoms. Best Wishes .

[Hidden in reply to wedgewood]

Thank you so much. I'm willing to try it. I also self treat for hypothyroidism and B12 isn't potentially harmful. Not keen on needles but who is?

Thank you again 😊

[wedgewood]

Help for U.K. Pernicious Anaemia /B12 deficient patients and others wanting to self-inject B12 .

ALWAYS MAINTAIN ABSOLUTE HYGEINE WHEN SELF-INJECTING .

B12 ( Hydroxocobalamin) ampoules can be obtained from some German online pharmacies . These pharmacies are strictly controlled by the German Health authorities , so no cause for concern . No prescription needed in Germany for B12 ampoules ( how enlightened !) Many members of the forum obtain their B12 ampoules from these pharmacies, and they are very reliable .

bodfeld-Apotheke.de ( in German , but can be obtained in English from a drop-down list on the top right-hand corner of the site .)

versandapo.de ( in German only so you might need a translation app. Or use Google Chrome . )

These pharmacies use a courier for deliveries , and take about 4 working days .At the moment a delivery costs about €9.00 , no matter how many you order .( I order 100 at a time with a use-by date of 2 1/2 years hence . )

You can pay with a card , PayPal or Amazonpay .

I register with the pharmacies that I use . It makes it easier when you re-order.

amazon.de ( German Amazon ) available in English ) The disadvantage here is that the several pharmacies who supply B12 ampoules through amazon.de ,do not all deliver to U.K. You need to trawl through them till you find one that does .

Search for Rotexmedica vitamin B12 depot . Don’t forget “depot” because you could otherwise order Cynocobalamin accidentally, which Rotexmedica also produce . Cynocobalamin woukd work for you , but the NHS uses Hydroxocobalamin. Cyno is cheaper . These ampoules are 1mg x 1ml .

Hevert, another company produces 1mg x 2ml ampoules

Pascoe manufactures 1.5mg ampoules .

Needles , syringes swabs and sharps disposal boxes can be obtained from medisave.co.uk Always buy 100 of every item ( no , not the disposal boxes !)

I buy long withdrawing needles 21G x 1 1/2 inches . The withdrawing process makes the needle blunt when it reaves to the bottom of the glass ampoule ( ouch!)

I use a 25G x 1inch needle for injecting .

Open the ampoule using a swab wrapped around it , to avoid nasty cuts . The weakest place on the ampoule is marked with a spot on the neck . If you have a problem with this , a device called an ampoule opener , about £3.00 , is obtainable from amazon.co.uk

exchangesupplies.org also supply needles and syringes .

I use a 2ml syringe , although the ampoule is 1ml . This ensures that I get every last drop of precious B12 out . I pull out the plunger on the syringe, after having broken off the top of the ampoule ( having first flicked the ampoule to get all the B12 into the bottom) I inject air SLOWLY into the ampoule .Then when the plunger is pulled out again , every last drop of B12 goes into the syringe . Now the injection needle is put onto the syringe , and all the air is expelled , until a tiny droplet of B12 appears on the tip of the needle . Now you are ready to inject into the middle outside third of your thigh, where the muscle is nearest the surface ( vastus lateralis ) Inject at an angle of 90 degrees .

If you are needle-phobic , there is help in the shape of a device called an auto-injector , costing about £100. This is available from a Danish company unionmedico.com

I don’t use one but I’ve heard good reports on them .

The above method is called Intra -Muscular . ( I.M. ) you can find videos about it on Utube Some are good , others not so .

You can also inject Sub-cutaneously ( sub-cut) A shorter needle is used . I know nothing about this method , except that it is an accepted way of injecting B12 .

If you are injecting B12 fir the first timer, hounshoukd have so one nearby , in case of anaphylactic shock . This is a very rare reaction , but I feel obliged to tell you.

Do not worry about overdosing on Vitamin 12 -You cannot . That’s a proven fact.

I have been self-injecting for 4 years now , but I do remember how. very nervous I was the first time . I was shaking like a leaf🌿! . I don’t turn a hair now .It has changed my life . Don’t be impatient .Also some people feel worse before they start to feel better .

Remember to include vitamin 9 in your daily diet ( also known as folate in food )found in green leafy vegetables , peas etc .In tablet form it’s called folic acid . A modest 400mcg tablet daily would be good .It cannot be stored for long in the body .B9 works synergistically with B 12 .

Very best wishes .