I had an extra b12 injection one week gap to see if it would help. My symptoms have changed a bit. Every time I try and do anything I crash. (I don't mean anything mUch! !) I last had an okayish day spent at home 2 days after my injection. I cooked , did a bit of cleaning and walked around the block. After that balance issues (not bad) bit I seem to be doing less and less to keep symptoms athe bay. Hence trying thr rxyra injection to try snd function a bit better. Still in my room by 6-7pm as so noise sensitive and weak. I'm eating well. Taking vit D . B complex. Iron. Multivit. Omega oil. Zeaxanthin and Lutein. Taking less pain relief. Not on anything else. Have bloods in 2 weeks. Have I missed anything??
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Nackapan
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Just a thought Nackapan...if you’re taking a multi vitamin and B Complex you may be double dosing on vitamin B6 (or more than double dosing if the RDA is high in either or both - some B complexes have 300% ++ RDA if B6.
Have you thought of going back to every other day Injections to see if that makes a difference? Some people need to inject every day to get and keep well and you may be one of those people who need very frequent injections to repair and get well.
If your last okay (ish) day was two days after your last injection it would seem to indicate that you do need them more frequently.
No idea about the zeaxanthin or lutein - might be worth checking to see if there are any side effects or over supplementation implications....just in case.
Fatigue is just the worst! Hope things improve for you soon. 👍
Thank you. I'm alternating b complex with multivit. Sorry I didn't say that. Had to reduce multivit as on last blood test folate and magnesium above range!!
Yes good point to watch over supplementing. I think when so fatigued I throw everything in 'the pot' The Lutein and Zeaxanthin I checked out with opticIan as vision gone down since b12 deficient. I don't take it daily but was told a good one to take for eye health.
Yes I will consider every other day Injections. The only thing is I do get a headache every injection and it got so I never got a break so ? Weekly again to start with. I was hoping to go longer or stick to 2 weekly. But again good point Thsnks. So hard to think straight and stay positive. Thanks for reply.
Just checked . I've changed to Boots vits from Lamberts . Boots do have 100% rda of b2 and everything.as do multivit. Boots and supermarket own brands seem to have adequate amounts.
Lamberts have much more.
Industrial strength I expect for short term use . I think will try taking less supplements as diet is good. Very easy to overdo it. Perhaps less for body to process? ? ? Will keep up the iron as want to boost ferritin levels as mysteriously dropped by half and stayed there despite starting iron. Will see what bloods say in a few weeks. Have had a 4 month gap that hopefully is long enough for levels to settle. As I've read from others levels all over the place for quite a while whilst body in repair and b12 doing its job. Yes fatigue awful. Your body can't even digest properly. I've found little and often helps.
No. Injecting B12 does not increase your body’s need for iron. Apart from a small amount for the first few weeks after treatment starts - if you had macrocytic anaemia.
The body needs enough iron to make the number of blood cells it needs. It doesn’t make more red cells just because it has more B12, so it doesn’t need more iron.
Think I'd give the 'industrial strength' Lambert's a miss Nackapan, especially as you have evidence of over supplementation (folate and magnesium above range).
About levels all over the place...hmm...whilst those with B12 deficiency often suffer from other deficiencies because of absorption issues (usual culprits are iron, vitamin D, folic acid), it's not the case that having vitamin B12 injections causes other vitamins to 'be all over the place' whilst repair takes place.
Supplements are very difficult to get right because we're all different...and having B12 deficiency (and treatment for that deficiency) doesn't mean that we all should be taking super high doses of vitamins and minerals on a blanket one-size-fits-all basis (if you get what I mean) 😉. For most people, a multi-vitamin (no more then 100% RDA), is sufficient. Some take 400mcg folic acid as a maintenance dose (though some don't need it - I didn’t), where folate deficiency is proven - 5mg daily for four months via prescription is the usual dose. Nobody should be taking 5mg folic (or up to 5mg daily) a day...unless there is a proven need (long-term over- supplementation with folic acid can cause side effects and research shows potential for neurological damage). Not suggesting that this is something you do - just mentioning for other readers 😉.
There are some in the forum who do need super high doses of some vitamins and/or minerals, but they've usually worked that out carefully over time and used testing to determine what doses they need to maintain levels that work for them (i.e they discovered this 'along the way' rather than starting off on super high doses from the get-go).
Heavy duty supplementation on a just-in-case basis can do more harm than good - and is not necessary for the majority of people (despite what may be stated on some of the Facebook groups).
About the iron...can't remember but are you having full iron panel blood tests (not just ferritin)? Just asking because it's possible to have low ferritin levels but high iron status in the body (Anaemia of chronic disease is one cause). So...it's possible to induce iron overload even if ferritin levels are low...quite dangerous if it happens and not something anyone would want.
The real problem is that there isn’t a one-size-fits all dosing regime for vitamins, minerals or iron - it would be a bit like expecting all the cars in the world to use the same amount of petrol and oil - and we all know where that would end up!
It's also the case that people are often advised to take a multiplicity of co-factors - but advice is rarely given about possible side effects, potential dangers of over-supplementation, contraindications with other medications or underlying health conditions...so...
The Lutein and Zeaxanthin - hope the optician went through the above with you? If not, would be worth checking to ensure that these may not be causing an issue in any of the areas mentioned above (internet check or perhaps run it by a pharmacist). May be good for eye health - but are they good for you? Don’t know 🤷♀️.
I would always advise people to check these things out before taking any kind of supplements or herbal remedies.
Foggyme does it make a difference if your injecting b12 daily re the need for supplementation. I take your point about doing tests to see if there is a need.... Just wondered if I should be more careful due to the high frequency?
Hi Waveylines. No, injecting frequently with B12 does not increase the requirement for any additional supplements - including iron and folic acid.
However, those with B12 deficiency can have other absorption issues (for a variety of reasons - the main culprits being iron, folic acid and vitamin d).
So, if absorption issues are present, it's these that cause the need for supplements, rather that the physical act of injecting vitamin B12 (even if this is injected on a daily basis).
No. Injecting B12 doesn’t increase the body’s requirements for anything over that required by a normal person.
Having a B12 deficiency is like having an oil leak in your car. If you don’t keep topping up with oil (B12) then the car (body) doesn’t work properly. But the oil leak doesn’t mean that your car needs filling up with brake fluid (iron) or petrol (folate) any more often than a car without an oil leak.
The exception is if you had macrocytic anaemia caused by a B12 deficiency. In that case your body will go into a mad burst of making new red cells for a few weeks. That can use up more folate and iron (but not much of those). It can, however, significantly reduce the amount of potassium in the body. That’s because it can store lots of iron and folate, but too much potassium is harmful (potassium chloride is a good way of killing people). So you may need more potassium for those weeks, but not too much. Eating more potassium-rich foods should be enough.
Thanks Fbirder thats really helpful. 😊 I will get my levels re-checked as have been on a low b complex for a while. My red blood count has always been top of the range. I do have a vit D deficiency that needs constant topping up but thats due to my inability to tolerate any direct sun. I ate a banana daily for a while once I started injections but not now. Thank you.
Thank you. Yes 400mcg was too much for me daily too of Folic acid . Have 200 mcg now. I'm having a full iron panel done on next bloods . My hb is okay just my ferritin levels dropped causing loss of hair and I think added to fatigue. I will check again about Lutein and zeaxanthin and will just stop for a while to see. Pottassium was okay and have never supplemented with that. Just had more pottassium rich foods. Vitamin D I've taken for a few years as levels were 21 and needed loading doses initially (Infact that's when b12 was missed as not done!) Yes like you say everyone is different. I must be absorbing those supplements for bloods to change. When I took oral b12 before going back to every other day Injections the oral b12 seemed to do nothing? Not on any other medications at present apart from paracetamol or nurofen when needed. Have 'emergency ' pain relief if migrain hits or other.
Yes takes time to get the balance right. I think when you feeling so rotten it's vital to keep your good food at the right regular times. I know for me I feel alot worse if the gap is too long without food even with nausea. For me it's best to have my main meal at lunch time for digestion.
All really useful. I'm sure it all takes time.
Hoping bloods will show anything I've got wrong or right!
Nackapan Ive been doing alternate B12 jabs for 11months and have just increased to daily as my symptoms were returning during second day....lol. Feel better on the daily jab though its early days... Have no idea why I need them daily!! Madness..... I take a low B12 complex with folate because of the frequency of injections. My GP doesnt monitor me at all..... I am going to ask her for a blood test to check my iron & folate.
I still have to be careful with exercise. I easily become exhausted though Im a lot better than I was!! Xx
Oh my doctor wouldn't either. I request the bloods. She wasn't interested in the variations. I even had a print off of the yearly bloods I had to keep an eye on raising cholesterol leveLscs to show what my 'norm' was.
I'm still baffled what Gps pass off so much as okay .
I've waited 4 months as don't want to get obsessive but it's difficult not to clutch at straws when feeing so yuk.
I'm down to ealing around the block on a okayish day . Was doing it daily as lost si much weight initially. It's only 1/2 mile. I tried more once and got a migrain than lasted 8 days in and out. So yes very limiting . Important I think to keeo walking a bit even if it's round the garden! I've never been a gym goer or sporty. I however used my bike as transport and did used to swim a bit. That's totally out of the options at present. Hope your new regime gives you relief .
Well I have a B12 jab every 8 weeks, that balance is so fine if it was 3 days longer, I would really know it. At my last visit the Nurse gave me the date of next appointment, I checked the date when I got home, I told her 8 weeks, the date she gave was 11 weeks, this has happened a few times, it has taught me to always check the date she gives me.
Just a thought have you tried self injecting a different form of b12. When I had methylcobolamine it gave me a severe migraine after the injection... I self inject daily with the cynocobalamin and no headaches. Maybe you could try another form and see if it helped. Hope you get to feeling better soon.
I'm having hydroxocobalamin. I'm not self injecting as go to the surgery.
Thank you for your thoughts . Glad cyanocobalamin suits you. Migrains are just so awful . As are chronic tension headaches. I've had one with pa industry shooting randomly up the back of my head for days. Fatigue makes them worse.
I wonder if anyone else gets a headache after hydroxocobalamin. I think they due more time the nerve damage. But while knows.
i had it without any stomach pain which is the main symptom doctors concern themselves with.
i only had some nausea and lack of appetite as far as my stomach was concerned but i had a b12 (169 pg/ml) and vitamin D (20 ng/ml) deficiency so i was testing h pylori just to have it ruled out. it was positive.
i also had a headache every day for at least a year and my vision was bad. couldn't focus well, sensitivity to fluctuating light when driving. meaning, if road was not tree covered my eyes would adjust and be fine in constant lighting. but if road was tree lined, (shady) and then an area of full sun, then tree lined again, ect, my eyes could not cope with the fluctuating light.
i personally had a breath test done. you can also have a blood test or stool sample test but there are some reliability issues with blood test and the stool test seems to be such a small sample it could be missed.
i read that in UK you guys go to a gastroenterologist for an endoscope to check for h pylori, but that seems really invasive and not always accurate because if none of the samples they take show h pylori then they say you are negative when maybe it just was in the areas they scraped.
h pylori caused me to have iron issues i only found out about with a full iron panel.
also, my mcv has never been above 95.1 due to having both b12 and iron issue.
Once h pylori eradicated which took 2 tries, my iron percentage saturation went up to optimal fairly quickly. It took quite awhile for my stomach to heal enough to start absorbing b12 from suppliments though. i actually thought it wasnt going to absorb on its own but then it finally did. Took appox 8 months. during that time i was getting b12 injections every week to 10 days and after 3 months i tried going without a shot but couldnt last over 3 to 4 weeks before i was flat out desperate. i had several more injections until 6 months and tried again to go without. Again it was awful. then around 8 months i just no longer needed injections.
you know how you feel when you are low that fatigue, sleepy, tired, no motivation that pushes you to seek out another shot, well it was just gone.
Still struggling. Not gone out for days. Hope a new phase that will move me on? Either extra b12 injection thrown more symptoms or should have stuck to 2 weekly? Who knows. Waiting for blood tests 1/9 see if they say anything. This fatigue make you feel stuck to the spot with nausea and fragile head.
Hope you plodding on too.
Hard to stay positive but listening to everyone on here it can get better .
I'm going to a behaviour Optometrist (whatever that is) recommended on the headway forum. Hope to be able to read or watch TV with tints in glasses ect. Will report back on here if useful.
Dreading the assessment incase the trip and lighting sets off another bad headache. Have to try it though. Thanks for asking.
Will report back to all .
Ps I selfishly am glad it's raining today as dim light suits me . ☺Pleased others could enjoy sunshine before.
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