I have been battling for about 10 years with numerous health issues and was finally diagnosed about 2 years ago with PA along with many of the accompanying issues. Explained most, if not all of my ills. But finding a doctor that is knowledgeable has eluded me. The absolute worst for me is the mental toll it has taken. Initially I was just stuck on drugs because I was just considered depressed. (Ya think?!) Already had Hashimoto's and had to fight to get back on natural desiccated thyroid. The synthetics just messed me up yet insurance will only pay for synthetics despite doctor's letter. Doctors don't communicate and disagree on treatment. I've been taken off injections as my B12 levels are "too high" and put on WestTab Max tablets. I've not been symptom free yet but was better than I was 2 years ago but now some issues are returning. Information overwhelms me and I'm unable to absorb or understand much of what I read regarding what to do. This has taken me a while to write. I am the sole caregiver for my husband so my stress is off the charts. I am in the US and on a fixed income. A bit of rambling but needed to express my frustration at all this. I go back in 2 weeks to get my B12 checked. Not sure I can hold on until then.
I was taking sublingual B12 daily in addition to monthly injections but was told to stop and just take the tablets and then "we'll reevaluate".
Thanks for a place to vent.
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YearsNow
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I would start with 1000mcg injected every other day until you get rid of the symptoms. Then monitor your symptoms to find a schedule that keeps the symptoms from returning. I get tingly toes in about 3 weeks so I have my husband give me an injection once per week. B12 is not very expensive where I live (Canada) and the injections are available without a prescription. I pay about $1.30 per dose including the cost of needles.
Rant away I feel exactly the same and how right you are when you say Drs dont communicate. I also have Hashimoto's yet these damned Drs dont seem to connect this autoimmune condition with a B12 deficiency.
It's common sense your levels were high when you were recieving injections ! What the hell is the matter with these so called Drs ? It sounds as if since being on sublingal B12 your levels are in decline. Insist your B12 is reinstated or self inject as I do if you feel confident to do so.
It seem to be a constant tireing battle. š š
Thank you for your reply. My levels were high with the monthly injections and daily sublingual but I was not symptom free. I have to consider cost as well. I have other issues that may or may not be related. I am hesitant to handle things myself as I'm not confident and don't want to make things worse. I know how horrible it got for me before diagnosis. I knew there was something wrong physically and not just mentally. Thank God it's not that bad now but it's sure not good either. There is so much to read, it's difficult to do and understand. Thank you for taking time to respond.
If you were on monthly injections they are not suposed to retest because it is common sense your levels would be high ! When our heads are not good itis a lot totry to take in but remember that a B12 deficiency notonly affects a physically it also affects us mentally. You can not overdose on B12 or make things worse.
Keep a close eye on levels of folate, iron and B12 for a decline now that your injections have been withdrawn. If you notice an increase or return of symptoms you must insist your Dr reinstates your injections. Take care
My B12 levels, due to frequent injections, are likely to have been over the measurable amount since 2016. I'm not absolutely sure because my GP stopped testing my B12 levels when she instructed nurses to administer 2 injections a week: "Pointless". This was under the treatment instructions and advice given by consultants in secondary care.
If you look at today's other posts, you will find one from PlatypusProfit8077 with a link to a research article by Dr Bruce Wolfenbuttel. You do not need to read it as Platypus has copied the conclusion out - the part where it says that patients need injections, not tablets or sublinguals, and half of us need more than one injection every 2 months. Some far more.
If you aren't up to that yet, look at the right-hand column on this page, under the last heading Topics, there is a sub-heading All Things Pernicious Anaemia Society. On there, you will find polls, including one that asks responders how many B12 injections do they feel that they need. At the bottom of that short questionnaire, you can find the previous results from about 900 people with a PA diagnosis. You really aren't alone !
I remember being scared, confused, unable to function physically or cognitively - so could not work and could only access a computer in the library for 2 hrs a day. Luckily, the library was just up the road from me or I'd never have managed it. Even the library not quiet enough to be able to concentrate, so I spent a fortune on the copier, taking home information and going through it with a highlighter very, very slowly. This forum and all it's people were literally my lifeline.
You need to be well and stay well, not just because you are a carer, but also because you need you back.
Back then, in 2016, I refused antidepressants three times - because I knew what I was feeling was as physical a symptom as my hair falling out; all of it linked. I didn't know what B12 was though.
8 years on: I last got my B12 tested in February this year: yes, it's still over the measurable amount. Good. Because that is what it takes for me to be able to be me.
There is no level at which B12 has been found to be toxic. There is no reason to measure serum B12 once injections have started. This, in the UK, is the medical advice and guidance given to doctors by the medical professional bodies set up for this purpose. Some choose to ignore it anyway - not their peril, is it ?
What about the US ?
Ralph Green* ( Department of Pathology and Laboratory Medicine, University of California) wrote "vitamin B12 deficiency from the perspective of a practicing hematologist" in 2017 which ended:
" It should be noted that patients with pernicious anaemia at times report that the recommended treatment schedule is not adequate to relieve all their neurological symptomsand therefore often request, or may even treat themselves with b12 injections more frequently than the guidelines suggest. No biological basis for this apparent increased requirement for B12 replacement is known, but because there are no reports of adverse effects associated with excess B12 intake, there is no reason to advise against this practice."
....which should be good enough !
I really hope so.
* Ralph Green is named, along with others, on the article by Bruce Wolfenbuttel mentioned earlier.
YearsNow, Welcome to this journey, it's a complicated one. I'm going to repeat what's already been said... If you are supplementing B12, stop measuring it. Symptoms will tell you if you have enough, blood levels are meaningless. There are several forms of B12 available, cyanocobalamin and hydroxocobalamin are the most common. I'm also in the US and have found that purchasing B12 and self injecting is much easier and preferable than trying to work with a physician to get what I need. I do a once weekly injection and manage well with that frequency. It might take some time to determine what product and what frequency and dosage works for you. I am happy to provide information on sources here in the US. Private message me (I'm not sure how to do this) if I can be of assistance or answer questions. Can one of the veterans on this site explain how to send a direct or private message? Thanks, Lin602
Thank you for each one of your responses. It's helpful to know I'm not alone and I'm not really crazy...well I suppose that's debatable as I am overwhelmed right now and cannot concentrate to read or even comprehend much of what's written. I will check into finding B12 to inject and start taking my sublingual again.
The PA society has a great document called B12 Misconceptions. Give it to your Dr or quote from it . In particular blood serum level measurements are pointless after starting treatment with B12 injections. Good luck.. we are all in the battle together!! xxx
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