New here.. Hoping to get some info on how long after loading doses before I should start to feel better
I’m 23 years old and have always been very active (running, at the gym all the time). For the last few years I would say I’ve had a generalised level of fatigue (often having naps), but nothing that I couldn’t force my way through to go exercise. This year has completely changed. For the last six months I can’t walk down the street to the post box or go up the stairs without taking a break. The fatigue has completely taken over my life and it’s really extreme (I’m sure many of you know). I get very confused and forget what I’m talking about. I’m also extremely pale and have had lymph node swellings (although blood test normal on white cell counts).
I had low B12 around 200, folate less than 2 (off scale low), and tested positive for intrinsic factor antibody and smooth muscle antibody. I’ve had 6 B12 loading doses, and while I felt like I had a bit less brain fog and a bit more energy for the first week after them, I feel even worse than before now. The doctor is asking me to wait another 2 months before I try the next one.
I feel completely desperate and I don’t know if it’s normal to still feel so unwell after 6 injections?? Am I really supposed to just “be patient” like my GP is telling me? I’m scared there’s something they are missing ...
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Runnerblue7
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Yes unfortunately patience is needed. Nice /bnf guidelines do state with neurological symptoms to continue every other day injections until no further improvement than 2 monthly.
I had more symptoms but a lower b12 and an in range folate.
We are all different in healing times
My daughter nearer your age responded well but it took about 6 months.
Also on a daily folic acid 400mcg supplement after her initial higher doses prescribed for about a month.
If no better go back and ask for every other day to continue.
Mine were stopped after 2 weeks and I was worse. But after 5 weeks much worse so went back on every other day. At the time I felt like I was being g poisoned then I started to improve.
As tour level is double what mine was . You are young folate to treat.
I truly hope recovery will be alot quicker for you.
Dont push through at this point let your body heal.
Hey. Thanks so much for your message. The reassurance means so much to me - I’m just glad I am not going completely crazy and that it actually does just take time for some people. The impression I was getting from the GP was very much that I “should” be feeling better after my loading doses which sparked my worry. Thank you v much !
Hey. They said my liver function tests came back in normal ranges, except for ALT being abnormally low (they said high ALT indicates liver damage and therefore they weren’t worried about it being low). They said based on that they aren’t concerned about it.. it did flag in my blood test to say this antibody is an indicator of autoimmune hepatitis so I imagine best to ask for follow up tests in the future ?
This can be worrying, especially when medical experts seem to know so little about how bad it can get. Not everyone bounces back after loading dose, although this often seems to be an expectation from those administering the injections. What you are feeling is not unusual. IFab positive means that you have a pernicious anaemia diagnosis. Get a copy of that blood test result and keep it safe. It may prove to be very useful later on.
My B12 was 196 ng/L -luckily, the range locally started at 197 ng/L, so I was given injections straight away and did not have to wait to get worse. My ferritin and folate were both low but within range -but treated because I was still not doing well. I was given vitamin D on prescription as osteoporosis of the spine was found. Thyroid too can start to struggle.
I was in my late 50s then - but I would advise you to still get these things tested if they haven't been already.
I was very tired and often slept for 2/3 hrs mid-afternoon, or slept for 14-15 hrs at night. This is well documented as a symptom. There are other symptoms that are not so well known (at least to the medical profession) that alarmed me more. Sensory overload: when over-sensitive to light/ sound/ smells/ peripheral movements was disturbing. Lack of any ability to concentrate when being bombarded with all of these made things difficult and exhausting: supermarkets in particular, I remember.
None of this affects me much now - I don't have naps, I sleep for about 10 hours now at night, I can shop in a supermarket (covid permitting). These are not symptoms that have disappeared completely, however, but are controlled and managed by B12 injections. Minor blips occur.
On Friday night, for example, I was making chilli -and threw away a perfectly good red pepper that I had just chopped up because it smelled strongly of white spirits. Then I checked, before throwing out a second one, with my partner. Turned out it was just me. I'd completely forgotten that my brain got smells confused and misinterprets signals. It happens so rarely now.
I told you about this one because it's funny. It also demonstrates you how you can laugh at something once you recognise it - although at first it was frequent, confusing and disorienting. If you think something is happening that doesn't make sense to you, check on here with others. Also check likely symptoms on the Pernicious Anaemia Society website and others run by people who know what this condition can really do. I also found Martyn Hooper's books, Sally Pacholok's book and Tracey Witty's blogs very useful when trying to get a grip on what was happening to me.
Keep track of what happens to you. List all your symptoms, then choose a few: the worst ones. most frequent, visible ones, ones that worry you most, and especially any worsening or neurological ones- in which case, go back to your GP. Keep a daily record chart of frequency and severity and record when injections are given. This is for you. For your GP or any consultants that you choose to share it with. It will help you if your memory/ cognitive ability are problems, if mood-swings or concentration poor - after all, you might wait months for appointments and need to make the most of them.
On the positive side, it will help you notice any improvements in symptoms, and might help your GP eventually find a treatment frequency that prevents any return -that, after all, is the aim. Expect this to take time.
You are young, previously fit and active, and have already seen some improvement -and these are good signs that you can get this under control. This forum has plenty to offer in terms of advice, guidance, support and kindness from people who have been living with this condition. They really helped me through the worst of it.
Hi,I want to thank you so much for your reply to my post - it means the world that someone took the time to reassure me. I’m really glad to hear that I’m not alone and not everyone bounces back so quick, as this was definitely the expectation of my GP and the nurses giving the injections..
Thanks for pointers on what extra tests I should ask for, as well as books and resources - I do feel reassured when I can actually understand what is happening to my body.. I had started having concerns that there was something else significant wrong. And then on top of the worry of this, I’ve just been non stop crying all the time (I’m guessing this is to do with mood swings as well as being so tired)..
Hoping this next week will be better than the last.. thank you again hugely for your reply!!
The crying, yes - I'd forgotten about the crying. Also the very short fuse - I'd probably be embarrassed, if I didn't have such a short memory !
Don't feel lost or alone. Whatever you are experiencing, there will be someone here who also had it, someone who's mum's got it, someone who has it twice as bad as you have -and someone else who knows how to get rid of it !
It sounds as if your GP is doing the right tests.
Autoimmune conditions such as PA can also be accompanied by others: psoriasis, vitiligo, Grave's disease/ Hashimoto's (autoimmune thyroid conditions)..... there are quite a few others.
My GP regularly tests my folate, ferritin, vitamin D, FBC, liver & kidney function ... I think this last is because a consultant once misquoted me, and wrote in his feedback that I regularly drank 9 units of alcohol a day !
Anxiety can be a symptom too. It can help to be aware of this.
I was 64 yrs old when the trouble started. My B12 level was 98. They gave me a recommended course of Hydeoxycibalamin injections ( you can find that schedule on this website) No magic happened immediately but in about 6 months time I couldn't even remember how I used to suffer, the unsteadiness, numb feet and hands, tinnitus etc. Everything back to normal now. I turned 65 last week. It takes time, the repair is slow because damaged nerves need to be fixed. I also take 1500 mcg B12 supplement everyday now. I am a strict vegan.
Be patient and hang in there. Full recovery can take some time. When I was at my sickest and suffering severe symptoms including neurological involvement, I continued to recover over about two years. I was worried that there was something besides low b12 wrong with me in the beginning. My levels were almost 800 after weekly injections and I felt awful. My neurologist assured me that it takes the brain an entire year to recover and that’s why I still felt bad. My initial injections given by gastroenterologist were monthly for two months then I went off shots, took sublingual B12 and was very ill within 3 months. My general practitioner gave me weekly loading doses and cut back shots to every other week after b12 serum was above 2000. Four years later and still struggling with an adequate b12 injection schedule. I self inject and am lucky to have a great doctor who understands and listens to me. As long as you get enough b12 you will feel better. Just takes time. Negative for IF but shots for life. My gastroenterologist suspects P.A. but says only way to know for sure is the Schilling test which isn’t offered in US any longer. Good luck and I hope you feel better soon!
Did they check your thyroid? Not just tsh levels either. I was misdiagnosed for years before I found out I had hashimoto's. I finally went to a natropath after 3 different Doctors told me I needed to lose weight and that I had anxiety and depression. Come to find out that not only was I hashimoto's, I have MFTR Genitic mutation on top of cronic Epstein barr virus and SIBO! I was severely deficient in VD, VC,Iorn, B12 and Probably more. It's been a year since my diagnosis and I'm still not out of the woods. Hang in there. My natropath has checked me for everything I asked for and I was right. Trust your gut and don't be afraid to advocate for yourself. If your Dr won't check find a new Dr. Best of luck.
Hiya I felt initially worse and then much better after my loading doses. What is being done to treat the other deficiencies? As you'll have no doubt picked up from the other responses, GP's and practice nurses often have an extremely limited understanding of PA and most of us have had to do a lot of our own research to get an understanding of what is going on and advocate for the right treatment for ourselves. I'd recommend reading Martyn Hooper's books (free samples on Amazon kindle to get you started ) and checking out his website to get a better understanding of the picture, links below. Don't be afraid to try out a few different GP's until you get one with either a better understanding or a better listening ear and be confident and clear when you explain what is happening - whatever their expectation is, they don't know what is happening and you do! From a personal perspective, the things that helped me aside from the injections, are daily iron tablets, Iyengar Yoga (gave me energy, rather than depleting it and left me feeling amazing) and starting making my own kefir at home (much more effective than shop bought) - this one was a game changer for me and massively improved both my gut health and my mental health (check out Facebook group uk fermenting friends for free grains and advice)
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