Hi, folks! So, here I am, 2 weeks into loading doses every other day.
I've gone from knowing I could never self-inject ... needles needles needles aaaagh!, wondering where the hell to start, wondering how on earth I'll ever manage it, finding the smallest, finest needles on insulin syringes, discovering that I can't extract all the fluid from the ampoules with them, buying longer needles and 2ml syringes so that I only waste a drip or two rather than half an ampoule, discovering that I had 2ml ampoules in the first place and why-didn't-I-think-of -that anyway, managing to back-fill two 1ml insulin syringes and put the plungers back in and extract the air bubble that appears at the blasted plunger end, and give myself 2 injections, one at either end of the day. All thanks to the help and patience of you lot. I and my unbruised belly thank you.
And guess what? I've just realised that my hands shake a little less so that I can do all that, and the numbness in my left hand has gone and the tingling has shrunk back from my hand to the finger tips of my third and fourth fingers.
It's working!!!!
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Schenks
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Thanks, Ruthi. I have to say, I've taken to injecting sitting in front of the computer screen, watching reruns of Great British Bake Off whilst rubbing the soles of my feet against the knobbly footrest, in order to control the butterflies in my tummy and the weird prickling from anxiety I get in my feet - as though looking over the edge of a big drop!
I went to get my holiday jabs. Hubby came with me to drive. As we sit in the waiting room he kindly says 'I couldn't even feel the jabs when I had mine'.
I nearly fainted - while he is saying 'You've gone very white, are you OK?'
Ten years we've been together, you would think he would have wised up by now!
Sorry newbie here, not (yet?) diagnosed. Are your shaking hands from PA, or just nervousness from injecting LOL? Tremor/shaking is one of my issues and I'm not sure if it's really a symptom of B12 deficiency. Thx
Hi and thanks for your re. I haven't been diagnosed with OA but my neurological rehabilitation consultant asked GP for a trial. But only once a month for three months. The amazing DrC said I needed a loading protocol, and thank goodness he did. The tremor, as I suspected, is evidently from B12 deficiency although I'm quite sure you're right and that a residual element is from the screaming and abs! So it'll be interesting to see how you and your shaky mitts fair!
God I LOVE your sense of humor. Mine died a long time ago thanks to all this hormone misery (but I'm trying to wrangle it back!).
Yeah it's not just my mitts anymore either, my whole body feels like it's continuously running a marathon. A long, long, loooooong wait until monday and I meet with my doc again. My husband nearly dragged me to the doctor yesterday to insist on shots! Too bad he works all day (or not... it limits the number of hours he has to listen to me complain LOL!).
Normal social cycle beginning: Hi, Jade - thanks for being brave enough as a newbie to answer me. And hats off for understanding half of it despite predictive effing text ballsing it up. Even I don't understand what the hell OA is! All that was missing was a bloody p. And that's no reference to urine or the elderly. And if the predictive text on this phone thinks I belong in that category of user, it's going in the bath! Normal social cycle end.
Rant cycle beginning: Holy sh*, Jade, @#&£+ the doctors and waiting for the f@£#&"*&s! What the hell are you waiting for?
Sorry. I am rather contemptuous of most of the doctors I have met, at least here in Lancashire.
I'm guessing that you must have suffered. For how long?
Actually, I'm really angry to hear about your disgusting lack of appropriate treatment. I admit, I am surmising here, and Heaven knows I can get it wrong (false modesty alert), but here's an approximation of a fraction of what you have gone through: you have felt really as though your life force was draining away from you at some point of the day, every day. You've been to the doctor repeatedly and told your tests are reasonable to normal, but you continue to get worse until you feel that this must be what it's like to be old.
Not only that, you cannot accept the role of being, to whatever degree, disabled by this, and your endlessly questing to find a way through means that your conversation is peppered with your trying to work it out, which makes you feel like a bore.
If I'm way off the mark, forgive me. This is the experience my forum friends and I, on the TUK community, have experienced as nauseum (don't know about the bore bit for other forum friends - that one's mine.)
Anyway, where I got to with the B12, I've stabilised my thyroid status, I've addressed the underlying autoimmune crap and got that under control (it's taken over 5 bl**dy years) fighting NHS doctors all the way and eventually finding two in different disciplines who will work with me, and not against. So the next to last piece of the puzzle was always going to be the B12.
One consultant agreed to a 'trial' dosing of one injection a month. Actually, he refused to recommend a loading dose of once a week, never mind alternate days. So, knowing that the best I was getting was once a month, I set about gathering the equipment, the B12, the sharps, syringes, sharps' bin etc, so that the second day after the NHS jab, I was ready to take over and give MYSELF the loading protocol.
HOWEVER, if the f*****s had refused me, I would have had to take matters in my own hands and gone ahead and self-treated, absolutely terrified of having a bad reaction like they say happens rarely. I'd done a huge amount of research first, and therefore was ready to go, but I have to be honest, it would have been far more terrifying without having spoken to Dr C. and got his guidance.
Anyway, I hope that, in my not exactly inebriated state, more like slackened-off, I have conveyed something of my support for you, empathy for your situation - or not...
This deficiency of a simple and inexpensive supplement that is B12 is far more common than a simple blood test for pernicious anaemia will reveal. And for more than a few suffers, it causes not inconsiderable impact on one's life, by which time, one might stumble, or drop things, or feel so tired you could faint, which means it's been going on for a while. And if that's you, you have my utmost whatever.
Mind you, that could all be a load of B*"££+£& because I am a little intoxicated. . .
I have just had a quick search at your posts and it turns out it is a load of @#£_££s, because you're really sussed, have a plan and supportive doctors and an evidently big enough brain to work your way through it all. But you still have my support and, if course, respect.
I suppose i could be a bore, and for the rest it's still pretty accurate - been suffering a long long time, etc etc, but yeah I try to be proactive. Managed to diagnose myself and get treated for sleep apna, hypothyroidism, adrenal insufficiency, various vitamin deficiencies.. the only condition actually diagnosed by a doctor -first- was small intestinal bacterial overgrowth (SIBO)...
I know you probably don't need the following explanations, but for what it's worth ---
The reason I'm waiting til monday is because that's my appointment with a new CFS doc (who seems to be pretty good but we'll see)... and I didn't really feel like doing the la-dee-da dance with my GP (who actually has been pretty supportive throughout this process, albeit not super knowledgable about hormones BUT very interested in figuring out what's wrong with me). Plus I know why I feel like such crap at the moment - I was doing an experiment of taking T4-only (instead of T3-only), and I expected this... still doesn't make it less painful! Today has been MUCH MUCH better after 3 days no T4! (In case anyone thinks I'm stopping meds completely - I'm not! I'll just restart at a lower dose within a few days, maybe go back to T3 only). I'm REALLY hopeful that solving this B12 issue might solve my intolerance issue! Fingers crossed!
One reason why it's taken me so long to end up on the PA story is that it took aaaaages to get a handle on thyroid and cortisol... start the med, assess response, adjust, take thyroid-cortisol connecting into account, fix low iron, vit D or supplements etc, try adjusting meds again, do great for a while, crash, readjust, new labs, new symptoms, getting better, getting worse, not sure what symptom causes what... worst was when I blindly followed one of my hormone doctors who started a bunch of hormones ALL AT ONCE. It became impossible to figure out what was causing what, and I lost a lot of time with that whole story.
And all this time, I *thought* I was addressing all vitamin deficiencies, including B12. It's only on another forum that I finally learned that PA means you don't absorb B12 through the stomach - THAT was a real revelation LOL! So, now I'm here.
No hangover - I'm a really cheap date: tipsy on one small glass of wine ... I kid you not.
To say i'm impressed is an understatement and in no way mean to to sound patronising. first of all, that you self-diagnosed - and then managed to get treated - " sleep apna, hypothyroidism, adrenal insufficiency, various vitamin deficiencies.." is admirable (the self-diagnosis nit) and astonishing (the getting treated bit). I am also very envious. When my husband came with me to my last GP appointment he was both staggered and infuriated by the way the GP 'handled' me. She did not take one word of what i said into account, other than to argue, almost to the point of hysteria, with me.
You know, I haven't answered you for this long because, frankly, after reading your post i felt so very alone, where doctors are concerned. Nothing to do with you - I'm not saying that, but the fact that i have had to fight against the bar-stewards, every damn step of the way has been powerfully contrasted with your experience as you've written it here. Little hints you've given, such as a doctor diagnosed SIBO (the one who diagnosed that in me took all of our savings over several months of treatment and then happily effed off when the money ran out). Even the fact that your GP has been very interested in figuring out what is wrong upset me by contrast. My GP told me i was a heartsink patient, but the kind who is one because she doesn't know how to help me. this same one, by the way, who had palpitations when I told her i was considering self-injecting B12, and who flapped at her chest spluttering, "overdose ... dangerous ... you can't ... "
As for cortisol, I can't even get my head round that, hence the adrenals being the last bit of the puzzle. your story is amazing. how you've managed to sort it out so far is beyond me, and I'm clever. You must be a genius.
Thank you Schenks!! But, my will to fight was a long time developing. I've been having issues since being a teenager, and next year I'll be 40.
...the sleep apnea diagnosis came 10 years ago (actually I have my MOTHER to thank for that one!), so it took about 15 years to get that diagnosed (I was snoring like a trucker already at 15!). I had to go through 3 different doctors to get a referral.
- the hypothyroidism was only treated about 6 years ago, and first clear hypo indications started at age 18, that is - 22 years ago -- I blew up 30 kg in a matter of a few years. Doctors just looked at me stupid! Fat and lazy!
- the adrenal fatigue only treated about 4 years ago, though I had CLEAR symptoms already going back 12 years....
I have been through so many GPs and Endos in the last years, many left me in tears. I had some really really bad days. Lost many friends. I never thought I would find a GP like this one, so in that respect I am indeed very very grateful and I am really sorry others cannot find supportive docs.
So in a nutshell it *sounds* like I am an awesome go-getter, maximizing my health, taking charge, etc, but it has been a loooooooooooooooooooon road. Persistence (and reading as much as I can) have been the key.
So sorry to hear about the sibo doc - that is horrible! To be sick and then on top to be taken advantage of!
I have more respect for those of you trudge on despite not having a single medical advocate!!! I am lucky that my family and the newest GP support me. I know there are many who have been alienated by their families and friends, and I feel so sorry for them. Thankfully we at least have these forum and each other!
So so though mostly positive. She actually seems really good as a CFS practitioner and seems to have a good strategy for treating what she found (chronic viral and bacterial infections, confirmed with various antibody tests). Also happy that she didn't force the lyme crap on me, since it all came back negative.
but when I told her about PA she had NO clue beyond the standard "low B12" most people have. However she happily took all the PA literature I gave her and said she would review it, and she was also aware that B12 can be in range but still too low (ie < 500 is deficient!). She just didn't seem to get the injecting/ lack of IF part of it.
So I think I'll have to pursue the PA thing through my GP. I have an appt with her for tomorrow! Fingers crossed she will be open minded about the clinical indications (the anti IF abs are apparently going to take forever to get back)!
Good lord, luck is on your side. Did she test for the viral and bacterial tracers, or did you go for-armed?
Out of interest, whereabouts in the country are you? And is your CFS woman on the NHS? She sounds more clued-up than my kindly but somewhat inflexible (beyond the bouds of his experience) neuro rehab consultant.
I went in with just my medical history of CFS, hormone issues, and "suspected lyme". She tested for lyme + EBV, cytomegalovirus, mycoplasma pneumonia, and some other bacterial and viral 'co-infections'. But the interesting ones were the T killer cells she requested: CD3, CD56, and CD57+ or something like that (two were waaay below range) so indicated weak immune system and fighting both viral and bacterial infections apparently. Through Armin Labs in Germany (Lyme lab). The CFS doc is in Belgium.
Oh, I'm DEFINITELY with you on most doctors being total &@!$#(*&#%'es!!!!!! I went to TWO endos who left me in tears and a complete wreck. Luckily my husband was with me at the 2nd endo appt and saw how totally CLUELESS they are! She wanted to wean me off hydrocortisone over the period of a year because she didn't believe the adrenal insufficiency diagnosis, and yet when my husband asked what OTHER conditions could possibly cause my symptoms (including severe hyperpigmentaton which resolved within weeks of starting steroids) - she couldn't come up with a single thing to say. I mean, HELLO have you heard of doing a DIFFERENTIAL DIAGNOSIS you stupid f---ing endo?! Run RUN away from stupid doctors!!
/end rant
(At least the 3rd endo admitted he just didn't understand enough about adrenals to help me LOL! He had my respect!)
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and for the rest it's still pretty accurate - been suffering a long long time, etc etc, but yeah I try to be proactive. 
B12 Depot Hevert Ampoules 
Therapeutic trial - how do I know if it's working?!
I don't think I have PA but I would appreciate the benefit of your advice please?
Can I use insulin syringe for injection and draw up from ampoule?
It's working!! It's working!!!
