Hi folks, it's me again.
10 days into SI loading doses on alternate days (hydroxocobalamin) and I'm feeling rough.
I have dealt with the fatigue for years by taking naps, getting up late etc etc. and now I can't seem to sleep. Has anyone else had this on starting a B12 regime?
I'm also taking folic acid, iron, vitamin D and a low dose of potassium (as I've heard it can be a problem if too high).
Amy
Nothing useful to add to your list, AmyG6500 , except I know some people have B complex -because B vitamins all work together and affect each other's performance. However, personally, I've done no reading up on this, so I'd wait for the advice of an expert on that.
Was thinking about you just now, so glad you're posting and best wishes. Other than that, I think it's still early days considering how ill you have been and for such a long time.
Thanks Cherylclaire
I think I used up my energy reserves battling with my GP, researching, going halfway across the country for a private consultation, getting used to SI.
I didn't factor in feeling so much worse once treatment started. Oh well, early days as you say.
Amy x
Hi AmyG6500
Sadly some people do seem to feel a bit worse initially when starting B12 injections. Hopefully this is just your body sorting itself out and it will improve in time.
I didn't notice B12 wasn't allowing me to sleep during my loading doses but now whenever I have a B12 (hydroxocobalamin) maintenance injection I am much more wide awake that night and sleep noticeably less than normal then - it feels bit like having waaaay too much caffeine just before bed.
Potassium is not really a good idea to take unless prescribed by a doctor as too much can be very bad for you. It is safer to increase your intake by switching to potassium containing foods (eg banana with your breakfast or possibly using LoSalt for seasoning instead of normal salt?)
Hi AmyG6500. I agree with @Taka, especially about the potassium, especially in those with cardiac conditions.
Potassium is very finely balanced in the body: it's quite easy to take too much, especially if you don't actually need it in the first place. And too much (or too little) potassium can affect the way the heart works - and potentially cause cardiac arrest.
Might be a good idea to ask your GP to check your potassium levels, prescribe an appropriate dose (if you need it), and then keep an ongoing eye on your levels, adjusting the dose to suit your specific requirements (again, if you need it).
The majority of people don't need potassium supplements and manage with potassium rich diet (lots of ideas on the Internet).
Also - I note that your taking folate supplements, though you don't say how much. Did your GP check your folate levels? Its sometimes difficult to get folate levels right and some people don't need to supplement - it's very. I have an individual thing.
Over supplementation with folate can cause side effects, one of which is insomnia (I know because when first diagnosed I inadvertently over supplemented and had dreadful insomnia.
Here's a link to information about folate side effects and warnings:
mayoclinic.org/drugs-supple... Folate: (Side Effects and Warnings)
Hope you get some good sleeps soon 🛌🛌🛌
👍
Thank you Foggyme and taka
I'm taking Berocca, the folate in that is 360ug. My last blood test showed levels of Folate as ok (I'd have to check the actual figure) but I had been taking this supplement a very long time. My tongue gets sore as soon as I stop.
The difficulty is that my GP has refused to treat me because my serum B12 was normal. So at present she doesn't know I'm SI and is not monitoring anything. The private doctor I've seen will write to her if my symptoms improve after this therapeutic trial. I have almost all the PA symptom, including neuro ones and a family history of PA.
I could get a private potassium test, or just eat plenty of bananas.
Foggyme and taka I was taking potassium because I read this:
"Megaloblastic anemia – Treatment with B12 can sometimes reduce potassium levels to the point where potentially fatal hypokalemia sets in."
Cheery stuff! Especially when th symptoms are similar to PA and I'm not being monitored. No palpitations though. Sorry, it's all so new and really quite scary.
methylcobalamininfo.com/tag...
Hi AmyG6500. Yes, treatment with B12 can reduce potassium, but the key word here is 'sometimes' - potassium reduction to dangerous levels is the exception, not the rule. And it gets more difficult because some people (older people and those with kidney problems) do not clear potassium effectively, so dangerously high levels have the potential to build up and cause problems with hyperkalemia (too much potassium).
I would always advise that potassium supplements are taken under direct medical supervision.
And I'm just wondering...you have neurological symptoms so should be on the neurological regime of treatment) 6 x loading doses then injections every other day until nofurther improvement). It's important at that you have this regime to prevent potentially irreversible neurological damage. So hope the private GP knows about this (many GP's don't) and has you on the correct B12 treatment regime?
Did (or can) your private GP test your potassium levels?
If not, people on the thyroid forum use this company for private blood tests (and there are others, if you search the Internet):
bluehorizonmedicals.co.uk/e...
Makes me really cross because your GP should be treating you (as you know), especially as neurologicalsymptoms are present (even when serum B12 levels are within the 'normal' reference range), you have the symptoms that could be due to B12 deficiency...and a family history of PA. Hmm 😣.
You could always try writing to your NHS GP, including evidence to support a B12 treatment request - this often works because once GP's have seen 'evidence' of what they should be doing in terms of diagnosis and treatment, it's very difficult for them to ignore and continue not to treat. (Happy to leave evidence and tips for arguments to make, if you need them).
Sorry...but it's late now and I don't have time to read through all your past posts - if you need more help with your GP, it would be useful to know your serum B12 level (and the reference range) when your GP refused to treat you?
Or of course, you might like to simply carry on with your private GP and see where that leads 😀. But how bad that you've had to do that in order to get treatment 😡.
B12 deficiency is a scary thing...and it's quite complex too! So, if and when you need help, just put up a new post...lots of lovely people here who will help...and we were all new, scared, plagued by ill-informed - sometimes hostile - GP's...so we all know how you feel 😣.
Good luck and take care x
Thanks so much Foggyme that's very reassuring.
My B12 was 483 (130-800ng/l) Gastric parietal cells and IF were negative. I had been self-supplementing with Berocca but for 10 years. I am also prescribed iron tablets, since a hair loss problem in my teens.
Given the test results I can see why my GP wouldn't treat me. But she gave no further explanation for the neuro symptoms, she diagnosed CFS and told me to find a support group. I did put a request for a therapeutic trial of B12 in writing and took in the new guidelines, she still refused. I have also been prescribed Zantac for acid reflux for many years, and on anti-depressants for longer still.
I realise I may be barking up the wrong tree but given the family history and that fact that thyroid, diabetes and coeliac have been tested and come back fine it still could be PA (basing this on some of the case studies in Martyn's books, where all the tests seemed ok).
I spoke to Martyn at the PA society and he suggested it's very likely to be PA if other things are ruled out and there's a known family history. I had in mind that if I improve on B12 then it WAS the problem, if I don't then I have to continue searching.
My concern is how long to inject every other day if there is no improvement? I know B12 is safe, it's just the potassium thing that has got me worried. I do eat a banana every day. SI is not a problem it's just knowing I'm doing the right thing. The private doc was happy to do a therapeutic trial and even showed me how to SI but he's not an expert on this, just someone who respects Martyn's work.
My mum (who has many of the same symptoms as me but not the neuro ones) is about to have a B12 test, after my nagging. She hasn't been self-supplementing at least or taking iron or folate. So we'll see.
That was 10 days ago now, AmyG6500 - so I'm hoping you're okay ?
It is worth persevering before ruling out B12 deficiency entirely, and starting again from scratch being tested for some other problem. It won't cause you any harm and it can take a while.
2 injections a week only stopped me from getting worse, which made it significantly different from 1 every 3 months (plummeted) and the current regime of 1 a month (slower decline, easier to track patterns -which may yet help)- and yet all blood tests would now tell a healthy story if it weren't for MMA level, which is now higher than when it was used to diagnose Functional B12 Deficiency in October last year. My cousin is doing well on one injection every 6 weeks. So much for guidelines !
So hard to know what is happening and work out how to get a reasonable quality of life, I know, especially when there is no-one else exactly like you, and you are trying to stabilise an undiagnosed condition. Although diagnoses, it seems, can be ignored.
Glad your mum listened. My mum was tested by my GP (no nagging required)- she's okay.
My blood is now being tested for genetic mutation, so I may still get to blame her (or at least her side !) You've done really well, Amy, keep going.
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