Anyone injecting 2x/day?: Hello, Just... - Pernicious Anaemi...

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Anyone injecting 2x/day?

EllieMayNot
EllieMayNot

Hello,

Just started B12 injection therapy roughly a month ago. Convinced my GP that, due to my neurological symptoms, that I needed to treat every other day until no further improvement. I was still so very fatigued and not seeing major improvement so I went to every day injections but would crash by mid afternoon. Tried twice a day and it really does seem to make a difference in the late day fatigue. Anyone else injecting 2x/day? How long have you been doing so and do you think that getting 2 IM injections a day might be too damaging to the muscles of the thighs? (I feel like a human pin cushion!) I have PA, Hashi's, FM, CFS, antibodies to myelin basic protein, the list goes on and on and I need all the relief I can get.

Thank you for any information and suggestions!

31 Replies
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I do my injections subcut......too cowardly to do the muscles ones. Takes longer to get into the system but works well. This give me four sites to rotate round......currently moved up to daily. Still know what you mean about the pin cushion effect....lol.

Am wondering how you are treating your thyroid ? Low levels of T3 - the Active thyroid hormone - could also be part of the jigsaw causing lots of symptoms - especially fatigue. Also being gluten free can help many with Hashi's. How are your levels of Folate - Ferritin & VitD ?

EllieMayNot
EllieMayNot in reply to Marz

Right now, thyroid levels are okay, although on the lower side of "normal" for T3. Have been gluten free for nearly a year. All other vitamin levels are well within the normal range. My GP did mention the possibility of addressing the thyroid even though at low "normal" and I am due to see her in a couple of weeks so I will definitely inquire more about the T3. Thank you!

Marz
Marz in reply to EllieMayNot

So are you receiving treatment for your thyroid ? Do you have the actual results with ranges ? What Docs consider fine/normal/OK - are usually far from ! There is a Thyroid UK Forum here on HU where I have been hanging out for almost 8 years - you can click onto my username and check me out if you wish ! FT4 and FT3 are good in the upper part of the range - this may well help your CFS/Fibro too ...

EllieMayNot
EllieMayNot in reply to Marz

Treating the Hashi's with LDN to bring down TPO antibodies, no current thyroid hormones in use. Most recent thyroid hormone tests: TSH 2.2 mIU/L (range .4-4.5), T4 1.1ng/dL (range .8-1.8), T3 2.9pg/mL (range 2.3-4.2) . GP did say that we might need to address T3 as it is in the lower normal range but hasn't put me on anything yet.

Marz
Marz in reply to EllieMayNot

Are you in the UK ? - or the US ? Unusual for a UK Doc to talk about T3 :-) I had all in range TFT's back in 2005 but anti-bodies were raised so was started on Levo/T4. My GP said it was to support the thyroid whilst under attack ! I live in Crete ...

EllieMayNot
EllieMayNot in reply to Marz

I'm in the US. I now see a private, functional practitioner as my regular Dr. didn't know much at all about Hashi's or any of my other issues. I'm afraid that standard care is pretty poor here, they rush you in and rush you out. They prefer to put you on antidepressants rather than addressing what is really wrong with you. Thank you for the info!

Marz
Marz in reply to EllieMayNot

Am afraid the understanding of the thyroid globally is shocking - sadly. Too much reliance on the TSH test - instigated by Big Pharma when they persuaded Docs to give up the NDT which had been used for almost a 100 years and people were dosed according to symptoms. When patients changed over from NDT to Levo/T4 many were unwell and under medicated. That is when the conditions FMS/Fibro became apparent. With way over 100,000 members on Thyroid UK you will read many stories similar to yours - there are many members from the US and Canada.

Have you come across Izabella Wentz ? She is a Pharmacist who has Hashimotos ...

EllieMayNot
EllieMayNot in reply to Marz

Thank you for all of the information you have provided! Yes, I have listened to a few of her interviews and recently purchased her book. A lot a valuable info!

Marz
Marz in reply to EllieMayNot

If you have success with LDN in reducing anti-bodies - please come and share on the Thyroid UK Forum - it would be appreciated. Not often discussed so it could be helpful to read a success story ... 😊

Hi EllieMayNot,

I have never heard of injections every other day, seems rather a lot if I am honest and I am worried it is too much - surprised at your dr as well. My dad had them quite frequently initially, but went to the standard every three months.

Are you sure it isn't your thyroid causing the problems. Have they been checked recently? Also check for iron deficiency/anaemia. You can have all three, especially if experiencing heavy periods etc.

When my thyroid meds were wrong and mis diagnosed thanks to a certain EX GP, I was like a zombie, it was horrendous and caused so many problems. I am now on my original dose plus T3 (which I have to fight for, thanks to the NHS because of the price)

I have had B12 and PA, plus vitamin D deficiency for about 15 plus years, maybe longer. I have a jab in my upper arm every three months now. But initially was every two months. I am no longer iron anaemic, thankfully.

Hope everything can be resolved for you, there is nothing worse than feeling so tired and exhausted.

Take care :)

Hi there.

Sorry I must disagree. You cannot overdose on it. The only way it would kill you is if you drowned in a bath of it.

Yes I did used to divide my dose as I had a manic job, long hours and my level was nil. I used to nose dive around 2pm.

I always use insulin needles which are finer and inject into my arm or on occasion my stomach area.

I’ve managed to push it out to daily which for someone with cfs is the norm.(if you see the right specialist).

Obviously it goes without saying I’d changed

Diet ( gluten dairy and sugar free)

Ensured I was absorbing my food.

( I had a comprehensive stool analysis and I was not absorbing my food at all well)

Ensured my vitamins were optimal. I had no Vit d3 and magnesium (was v low- red cell magnesium test). So I have injections of mag sulphate as the cramps were unbearable. That’s ok now.

Then last I sorted my adrenals and thyroid.

I checked my cortisol and dhea with a saliva test ( four in one day). They also were a mess.

I don't convert t4 to t3 so I added t3 in to my thyroxine then swapped to ndt.

Took time but am much better.

Do you have any pain with the cfs?

Or any test results?

See drmyhill.co.uk and in the search engine on the top right hand corner type in orchestra.

Fab article on achieving good health. You just need a basal thermometer if you’re on thyroid or adrenal hormones.

Gunj_redjem
Gunj_redjem in reply to Howard39

Any idea that high b12 levels in blood can hav a damaged child during pregnancy as I’m having b12 shots frequently... how can I lower my blood levels I’m really worried as I need injections weekly to recover

I do not know for certain what the position is for pregnancy but know that too little is definitely an issue so you must keep well for you.

Howard39
Howard39 in reply to Gunj_redjem

Hi

This is my understanding

As b12 in injection form is v low on toxicity there has been no set top limit on levels and amount you can take.( you pee pink if you have too much)

BUT

There is if it’s in tablet for for pregnant women. So you cannot take too much.

There is a chance is raises the risk of autism, however so does diet and injections.

From memory I recall 2000 mcg is the top supplement suggested.( I’d hazard a guess that’s a conservative amount too )

Does that help enough?

Best wishes

Helena

kcbrecks
kcbrecks in reply to Gunj_redjem

Our daughter was diagnosed with PA by the Schillings test years ago and very successfully gave birth to 2 sizeable babies who are now hefty young men in their early and mid twenties. She also held down a responsible job in an international bank and is now the receptionist at a local primary school. She has self injected for many years now and her B12 deficiency is just a part of her life, IBS is more of a problem.

Gunj_redjem
Gunj_redjem in reply to kcbrecks

Thank you so much do you hav any idea what would your daughters b12 level b during pregnancy 😊

kcbrecks
kcbrecks in reply to Gunj_redjem

No way, this was 20 plus years ago, it might even have been 30 years ago, and there wasn't the access to records or the research data available as there is today. She had the usual series of loading injections then the 12 weekly injections and still does, even though she now has the capability of injecting as and when so likes out of my supplies.

Gunj_redjem
Gunj_redjem in reply to kcbrecks

She must have had normal levels then because I have had too much of injections which I’m worried about my levels have gone to 2000☹️

kcbrecks
kcbrecks in reply to Gunj_redjem

But why would that matter. It isn't poisonous and your kidneys will filter out the excess within 48 hours they say.

kcbrecks
kcbrecks in reply to Gunj_redjem

Just remembered they wouldn't even test her for B12 levels as the equipment could not cope with it after she had injections. It was not included in blood tests and that was when she was having the boys. I am not medically qualified but as this stuff isn't poisonous I can't see what the problem would be. No doubt others will correct me if I am wrong.

EllieMayNot
EllieMayNot in reply to Howard39

I have had extensive testing and my cortisol is totally out of control, spiking in the middle of the night. I do have a lot of muscle cramping but my magnesium tested in the mid range of normal. I was actually considering the magnesium sulphate injections just as a trial but heard that they are terribly painful, is this true? Thank you so much for your detailed answer!

Howard39
Howard39 in reply to EllieMayNot

Hi there

Yes the liquid is “ thick” and it sometimes stings.

However the cramps were far worse so I have 0.5 mm insulin needles and I take maybe 0.4 ml depends on how much I can get in.

For me I can use my leg or waist area. A jacuzzi is fab as it dissipate any lumps. You need to keep your finger on it for a good while.

My favourite tablet are in a multi mineral complex(to be fair it only contains a few items buy the mag chloride is fab too) Biocare make.

I’d say go for it. You have nothing to lose. Do your own injections. I can help but you need those thinner needles. You draw and use with the same ones.

BD micro fine. You should get them on the nhs or any large pet supplier.( no prescription needed) in fact you can get b12 from them as well( just different additives but v cheap).

Have you got your cortisol and dhea results to hand?

If cortisol is high(mine is v high and spikes in the night) ashwaganda and holy basil are v good.

Low dhea and high cortisol is the most common adrenal condition.

Followed by low and low which is easier to increase than block.

Howard39
Howard39 in reply to Howard39

Hi I guarantee they did the wrong magnesium test.

You need red cell magnesium which they don’t do in a surgery. I’ve seen it on line. That was the first thing I had tested by my specialist.

She’s 5000 patients and has yet to find anyone with optimal magnesium levels!!!

EllieMayNot
EllieMayNot in reply to Howard39

Okay, will give the magnesium injections a try. Thanks for the info. Cortisol hits 31.31 pg/mL at 2am, very high. DHEA to cortisol ratio 1,021 with DHEA at 7am 148 pg/mL which is lower end of normal. I am rotating some different herbal formulas for sleep which do contain ashwaganda and holy basil. I notice if I stay on any one formula for too long they lose effectiveness so it is best for me to rotate them.

I inject twice a day and have been doing so since November. I seem to have functional B12 deficiency as my levels were sky high at 1,200 and that was before I ever supplemented. I was losing the power in my legs and was on crutches...I am now back walking and working two days a week. If i do not do twice daily injections I cannot function. I think i need to keep my levels ultra high so that some of the B12 trickles over into my cells. My tummy where i inject is like a pin cushion but i will take that any day other the awful myriad of symptoms i had.....I really felt like i was dying and now I am getting my life back, although the fatigue and dizziness can be severe on some days. the best of healing hugs. xx. J

Wow - well done you: great to hear another positive story.

could not have done it without your help and guidance and all the fab people on this forum. xxxx

For the last 3 and a half years + I have used 1.5mg in 1ml Pascoe brand hydroxocobalamin ampoules and get away with this where 1mg/day just definitely wasn't enough in the preceeding 6 months.

I know of several people who have been doing 2 jabs a day (one girl also is type 1 diabetic so actually does 7 jabs every day) for three or four years and a couple of people use the 1.5mg ampoules each time to get 3mg per day. This seems to be the only way to go if you want good recovery from severe neurological symptoms. Most of these need quite a lot of extra supporting supplements to go with it.

4 years ago I was needing enough potassium and magnesium to kill a normal person every day but this requirement has reduced and in the last 3 weeks I haven't needed any extra beyond what my diet and my multivitamin and mineral supplement supplies - woohoo! Last year my folate and iron crashed and I had a mammoth task to get those levels back up but they too are OK at the moment.

Just a tip.

In 1940 ( as I recall) vitamins were tested, niacinamide was one. The scientists made daily recommendations on those findings and they were v comprehensive.

Our version of the GMC divided them by 3/4. So ( I’ll stick with niacinamide for an example) the daily limit is 1500 not 500 mg per day. Vit c is another one. What we are told is “ safe” is in fact on most occasions a fraction of what we could take.

There is no £ in vitamins. Hence they are forgotten.

Hi,

I haven't posted here in a long time but I wanted to reply to you. I have to do injections every other day without fail and sometimes if I go through a lot of stress, I'll have to do an extra injection!

I think your body can tell you how much you need. I sometimes try to go longer between injections but it always comes back to bite me and then I have to play catch up.

From my experience I can easily see how, for some, daily or even twice daily B12 is a must. I don't believe you can overdose according to all the wonderful and learned experts on this site.

So, trust yourself! Maybe in the future you can cut back but for now do what feels best for your body.

All my best,

Nancy

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