Hi everyone,just thought I'd put this out there and see what opinions I get?
So I've done 16 loading injections now since early may,first 6 limited but some improvements,ie headaches have gone and palpitations significantly improved. Had a further 12 as my GP was completely on board with loading until neuro signs stop improving. After that it's been a mix,last week had the best week for as long as I can remember,real improvements all round so went 6 days without a jab but day 7 really crashed! Since then had 1 Monday and another today....but this was a fight....yesterday I had to sleep all afternoon,felt rubbish,dizzy,feet aching etc and today still really dizzy,tired and walking unsteadily,the sighs etc. was told I wasn't written up for more jabs except 3 monthly as my bloods showed off the scale,a different GP ended up being called in and we had the row over guidelines,I said I'd call the page up on my phone while he went for another book! Took a while until he gave in when proved wrong,no apology...then he sayis I have to see a neurologist and haematologist as I've not been diagnosed with PA ! I argued,he compromised with continuing jabs while I wait for a referral and I have to have IF test Monday,though the other GP never ordered this as she was keen to treat symptomatically. He's saying it could be something else as the jabs haven't worked by now and that only a neuro specialist can confirm signs! I understood that the IF test is unreliable? And now I don't know where I am! Made appointment to see my usual GP Monday before the bloods to get her views now.
Suppose I really would like to hear if anyone else has had this many jabs and still has really up and down symptoms and also that the blood B12 being really high now doesn't really reflect what's going on when I've had large red cells for many years without anyone flagging it?
Also needed a rant as his arrogance and dismissal while admitting he doesn't often treat B12 has infuriated me!!!
Thanks in advance for all the support on here!
J
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Janee635
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It sounds like you were having pretty strong improvement until you went a little too long between injections and crashed.
The IF test is pretty unreliable. If they are going to test for IF, they should also test for parietal cell antibodies. Those are not as specific to PA, but more people with PA test positive for parietal cell antibodies than test positive for intrinsic factor antibodies and the presence of either can indicate B12 absorption problems.
Another route you can try is to get genetic testing done (you'd probably have to have that done privately) to see if you have one of the genetic mutations that causes problems processing B12.
Another option is the active B12 test. The serum B12 level includes inactive B12. The active B12 test gives a better picture of what B12 your cells actually have access to use.
Have the anti-IF test. If it's negative then you tell the GP that it's meaningless as 50% of those with PA have a negative result.
You could also ask for an MMA test. That will determine if your B12 is actually getting into the places in the cell where it's supposed to be working.
I would also accept the referral to the neurologist as he may be able to tell if it's a B12 deficiency that causes some of your symptoms.
Are you taking other supplements? A good multi-B vitamin tablet and extra folic acid (800 ug a day) should be a minimum.
Yes, I have B12 levels that are off the scale as I inject once a week, and I have many of the symptoms still. My neurologist reckons that my peripheral neuropathy isn't due to B12 but is autoimmune - as is my PA, diabetes and Raynaud's. All I know is that it's slowly getting worse and worse.
I self inject and did it every other day for about 4vweeks then tried weekly. Lasted 4 days before symptoms worsened again so now back to alternate days. I use the lozenges too. I don't know what's happening but I will continue to do this as it's not worth stopping. It seems common for symptoms to be up and down, even when injecting regularly. If brexit means I have trouble buying it in the future, then I don't know what I will do. I hope the neurologist can diagnose you properly so you can receive more frequent injections.
Brexit is a worry for this reason alone, isn't it? I've just bought 100 ampoules of hydroxo from Amazon.de. I bookmarked a page before the vote and stupidly forgot about it. It's now rather more expensive because of the plummeting pound. I find methyl more effective, but I needed a back-up plan.
I find that my symptoms start to return within 24 hours of a shot unless I keep my levels really high. Generally I do this using nasal sprays. On one occasion I went to long (nearlly a day) without the nasal spray whilst being quite active and basically had a hypo - no balance, psychosis, exhausted, antisocial, pains in feet and ankles .... Just managed to make it home and up the stairs and into bed ... with a lot of B12.
Sorry to hear that you have hit up against GP ignorance but well done on holding your ground ... and hope things go well with your usual GP
Hi Janee635 635 as fbirder says "...extra folic acid (800 ug a day) should be a minimum." as this is essential to process the B12. Do you know your Folate level?
I started the opposite of you- once a month, then every three weeks, then once every two weeks, then twice a week when I started exercising. Lately , b/c of flare up of another auto immune disease I have, and then a tooth extraction, I have needed it 4 times a week and after the tooth thing, maybe because of all the pain, stress to the body, antibiotics,etc., I had to inject 5 times in one week! This topped me up and I did well for 3 whole days! Woo-hoo!
And then I crashed. I'm going to see if I can get on a regular schedule of every 2 days for a while and then maybe after I establish a schedule, see if I can cut back. I also use sublingual lozenges. A lot of them, 5-8 of the 5000 mcgs a day, mainly to keep the tinnitus at bay. I also use 800 mcg of sublingual methyl folate lozenges a day.
I am in the U.S. , never had loading doses, had to switch from GP to a naturopath to get enough b12.
So, don't feel like the lone ranger!
I can't believe how much B12 I need. So I totally understand your situation, Janee635, as I am in the same one. Hang in there! You are doing a great job if advocating for yourself!
"Have the anti-IF test. If it's negative then you tell the GP that it's meaningless as 50% of those with PA have a negative result."
The "BCSH Cobalamin and Folate Guidelines" mention Antibody Negative Pernicious Anaemia on several pages. I found it helpful to read the whole document.
fbirder has a useful summary of mainly UK documents which I think contains a quote about how testing after supplementation has started is irrelevant. if you search his posts you should find a link.
Are you a PAS member? They can sometimes intervene on behalf of members.
Some people sadly remain symptomatic even with recommended UK treatment. The PAS should be able to tell you more about this. Some people have some permanent damage.
That's a lot of injecting... I thought you only had to do it once a month worse case after loading doses... I had a reading of 94... I have today ordered 100 ampoukes from MyCare I only have a few out of the ten I first bought... Good luck, and I hope you find "Your amount" 😊
Janee635, I'm another who has to inject every day, and my symptoms vary even so. I've tried to leave longer gaps between jabs, but it really isn't worth it.
I'm sorry to hear you are having trouble with an arrogant doctor, but I think they all come out of the same mould! Well done for standing your ground. Actually, your post has highlighted the usefulness of a smart phone. I just have an ordinary mobile phone that only does calls and texts, because I'm an over-50 who gets grumpy about expensive tech.
Blimey, do you wee that out each day, or is there a reason for everyday? I don't know that I could do everyday I get a little bruise and it must cost a fortune... Poor you.. Big hugs x
Funnily enough, one doctor (private) who would be prepared to prescribe oodles of B12 if I asked for it, told me she had found that only when her patients did pink wee did she consider them sufficiently replaced. I haven't yet got up to her suggested limit of 5000 mcg injectable hyroxo daily - I'm now on about 2500-3000 mcg - and I haven't done any pink wee yet. I will let the forum know when I do! I have rather bad neuro symptoms which only seem to respond to frequent high doses.
Yes, it costs a bomb, and I'm not sure how to keep this up long term, especially with a need for huge amounts of T3 too. Injecting so frequently is tedious, but I've got used to it. I use to bruise sometimes, but not often now. Do you press quite hard when you're injecting?
I'm currently using a 5000 mcg per 1 ml hydroxo multi-dose vial, which was privately prescribed (the ampoules which have just from Germany are 1500 mcg per 1 ml) so I draw up 0.5ml or 0.6ml. I use methyl once or twice a week in addition, as much as I can afford.
As for T3, I'm currently on 150 mcg daily, single dose, and I could do with more. I would appear to have an insensitivity to thyroid hormone!
I've been injecting every day and finding that my heart rate has speeded up and I feel anxious a lot. Do you experience that Hillwoman? How do you manage your co factors? Feeling pretty anxious.
My heart rate is all over the place, but I tend to put that down to poor thyroid and adrenal function. As for co-factors, I just take the full range of vitamins and minerals in the most bio-available forms, including folate of course, and I don't let any of them lapse. I take good doses too, above the RDA. I take various forms of adrenal and thyroid medication too, under occasional private supervision. These meds have helped me cope much, much better with normal, everyday stress, and with a source of long-standing anxiety.
I'm sorry to hear the injections are making you anxious. Which form of B12 are you using? Have you tried a different type? People vary in their responses. I've read on the forum recently that some people become anxious or depressed on methylated forms of B12 and folate. My husband is an example of the opposite: only the methyl forms improve his tendency to anxiety and periods of depression. Maybe it would be a good idea to start a new post on this subject to ask for views.
Hi, sorry you are in this dilemma at least you will have an appointment with a haematologist I think that is quite rare.
My experience is that I felt consistently much better when I had my loading shots, by week three I felt very well. I then had a jab every 3 months which seemed to be okay for about 2 years. then I found that I would experience symptoms again after about 8 weeks to my doctor changed me to a jab every two months. That was about 3 years ago. Now I find that the symptoms return after about 6 weeks so hopefully I will be able to get the jab at 6 weeks now.
If the B12 jabs aren't really working for you I think that its a good idea for them to do a bit more investigating into whats wrong. There are so many conditions that manifest the same sort of symptoms. It wouldn't be wise for them to continue to treat you for a condition you may not have.
I know that it is frustrating. I have several diagnosed conditions and sometimes I wonder if I do actually have them all or its just one thing that gives me the symptoms of all the others.
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