Question on frequency of B12 injections

[john159]

Hello, after an initial 6 doses of Hydoxocobalamin spread over 2 weeks my symptoms reduced dramatically. Now, however 4 weeks after my last dose my symptoms (particularly memory) are slowly returning. I was hoping I could adopt a 2-3 monthly regimen. Would I be right in thinking this means I should be having an injection every 4 weeks? Or sooner than that or was my initial loading dose not enough? On this Forum anecdotal evidence seems to suggest it takes 2 weeks for the injection to have an effect which would mean I should be having them every 2 weeks? Thank you in advance for any help John

[waveylines]

Hi John......as you did so well on the loading doses it does imply that moving to two monthly injections is not sufficient. You dont describe your symptoms bit if they are neurological then you should have b12 injections every other day until no further improvement. So I would go back to your GP and explain what has happened sinece you were move onto two monthly. Ask for alternated days to be reinstated.

[john159 in reply to waveylines]

Thank you to waveylines, Nackapan and Sleepybunny again. My injections were self administered and my Active B12 when checked by Medichecks were off scale in their case greater than 256. My symptoms were neuro and improved in the 4 weeks after my loading doses of 6 injections over 2 weeks. After that my symptoms slowly started coming back. I have been put on a H2 blocker antacid now by the doctor which affects B12 uptake. I would prefer to take as few injections as possible in case supplies from Europe dry up. From what I read B12 is stored in the Liver and if production by the body ceases it takes 3-5 years to fully deplete. I wonder if the injections build a secondary store in the muscles or is the B12 taken by the body from the muscles to be stored into the Liver? I suppose the number of loading doses will be dependant any way on how long you have been deficient so as to rebuild those supplies.

At 6th form I was doing A Level Biology and Human Biology with the intention of becoming a pharmacologist. Wished I had kept it up now! I have just watched "The Father" the film with Anthony Hopkins were he plays a man suffering dementia and won the best actor Oscar. It very good but also a bit worrying about the possible future.

[Nackapan]

I got to the 5 week mark after loading doses and was getting more ill. I went back on every other day for months. I only made improvements then .

[Sleepybunny]

Hi,

Apologies for a short reply but go to go somewhere..

1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...

6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months

2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

There is no set time limit to how long the every other loading day jabs can continue. Maybe forweeks even months.

Memory issues would normally be considered a neurological symptom.

Do you have other neuro symptoms?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

You appear to have been put on the first pattern when my understanding (I'm not medically trained) is that you should be on second pattern in UK as you have neurological symptoms (memory issues).

Check the local guidelines on diagnosis and treatment of B12 deficiency for your area of UK as sometimes these can be unhelpful.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

I wrote a detailed reply with lots of info about B12 deficiency and some about folate deficiency in link below.

healthunlocked.com/pasoc/po...

I am not medically trained.

[waveylines]

Thing is John no one really knows what happens when the system goes wrong does it affect the ability to store b12 with some people? I have to do twice daily b12 jabs or my neuro symptoms increase if I dont. I reckon Ive lost the ability to store b12 in my liver as Im over two years on. I laso think I probably have some permenant damage as my b12 jabs were started too late.I feel the frequency of jabs is a small price to pay in comparison to the damage being done to my body systems if I dont inject. Its a little bit like telling a diabectic to reduce their frequency of injections irrespective of need. So frankly I would be led by what minimises or resolves symptoms. As for the B12 blood test once on injections its really not very relevant as it will always be very high but remember its what gets into the cells of your body not whats in a blood test. For that reason the nhs dont test b12 after starting injections.

[john159 in reply to waveylines]

Thank you for all the info Waveylines. This is all new to me. In normal times it would be nice to allow my GP to sort it out but when my Active B12 came back borderline he dismissed me out of hand! My TSH level is in the top half of the scale and Medichecks Doctor suggested that modern approach is if you are still symptomatic while on levothyroxine to increase the dose until the patient ends up in the bottom half. Healthy people usually test in the bottom half and the USA tend to have a narrower range than the UK. They are quite a few scientific studies that back this up. I am only on 50mcg Levothyroxine when the average is a 100. My GP of course said no. He said he didnt recognise the name of the Dr on the report? That TSH level goes right through the test range during the day? And he had more qualifications than that Dr? He also said prescribing like that was not the case? I wonder why GPs tend to have a bad reputation among other parts of the Health Service?

[waveylines in reply to john159]

Hey John.......most GPs are pretty ignorant around hypothyroidism treatment and under diagnose and then under treat. Once on treatment your GP should be aiming to get your TSH under one...... The NHS rarely test the thyroid hormones and this is mad as the TSH is only a signalling mechanism from your pitutory telling your thyroid to produce more or less thyroid hormones........bit irrelevant if you are having to take thyroid horomones because your thyroid is failing!! The medichecks doctor is half right about increasing if you still have symptoms but this is not new but the way patients were treated for over a hundred years sucessfully before big pharma came in with synthetic hormones and blood tests. If you can I would next time check not only TSH but ftThree and ftfour. Sorry my keyboard is playing up and wont let me write number symbols.....lol.

Look up Barry Peatfields book called Living with your Thyroid. Knowledge is power....

Lastly btwelve is commonly low in hypothyroidism so correcting it will help with uptake and conversion of thyroid hormones.

Keep posting lots of great people on here with good advice to help you.

[john159 in reply to waveylines]

Hi waveylines thank you for the information. Last year when my TSH tested at 3.63 other results with ranges in brackets free T3 was 4.76pmol/L (3.1-6.8) , free thyroxine 19.5pmol/L (12-22) Thyroglobulin 15.4kIU/L(less than 115) Thyroid Peroxidase Antibodies 41.2kIU/L ( less than 34) could suggest Hashimotos. I took 75mcg levo for a couple of months and got a Medicheck test and TSH went down to 1.64 and Free Thyroxine 18.6.

[waveylines in reply to john159]

Yes you are correct. Initially the thyroid levels can swing about but as the antibodies attack the thyroid more then your body becomes less able to produce thyroid hormones so your need for thyroid medication will increase. Some people find a gluten free diet helps to reduce the antibodies thereby slowing the process down. This is anecdotal rather than proven. You should aim to get your TSH around 1 or under. On 75mcg there is still room for an increase to do this. Most inportantly though the GP cant do this you really need all three test results: TSH, ft4 & ft3. If you look on the Thyroid UK section there are some sources where you can get this done relatively cheaply.

Your b12 jabs will help your body to utilise the thyoid hormones meds better. Ive had to reduce my thyroid meds since being on b12 jabs. So you may get some improvement on regular b12 jabs

[ClareP5 in reply to john159]

Hi, with B12 neuro you need to keep going until no further improvements. I have been doing SI every other day for 7 months. Just tried every 3 days and symptoms started to return. I couldn’t tolerate thyroid meds for first 3 months, which coincides with the approximate life span of red blood cells. I am doing without medical support too, not ideal, but apparently foot drop isn’t something my GP sees as a problem🙈

[Sleepybunny in reply to john159]

As you have thyroid issues, probably worth posting your thyroid results and story on Thyroid UK forum on HU. It's a very active, supportive forum.

[john159 in reply to Sleepybunny]

hello Sleepybunny I have posted a message on the ThyroidUK. Thank you very much for that tip as it looks a very helpful Forum just like the PA one. Cheers John

[Chucknz in reply to waveylines]

Wow Wavelines you sound like me, how long you been diagnosed??How on earth did you get your Dr to agree to 2 daily injections??

[Ctadds1 in reply to waveylines]

Hi there

Can I ask? How long have you been injecting at that frequency?

[waveylines in reply to Ctadds1]

One year. Am miles better....tremors not really noticeable though but still feel a slight buzzing sensation. I have have fluctuating numbness in toes so not there yet. Just had medical review B12 jabs frequency not queried. Have to say for me going gluten free has really helped with improvement in neuro symptoms. GP thinks cause is likely Gluten Ataxia. So am hoping that at some point will recover enough for jabs to reduce.

[Wowo23]

It always amazes me that ppl are given so few and far between jabs after loading doses. They wanted to put me on monthly jabs and I fought to self inject 3 times a week. I still have neuro symptoms that I fight, but will continue to jab every other day. I know it helped that my orthopedic oncologist fought with me. I hope you get more frequent jabs