How long did it take others to see results from Injections?

Allergies, blood and immune system
1

Hi I'm new on here, I have not been diagnosed with PA, but have started treatment for low B12 levels yesterday, my level was 112 - my sister has PA so it is a possibility but my intrinsic factor tests were not abnormal so they are not entirely sure what has caused my low levels. My Dr ordered the tests as I am having difficulty swallowing.  I have had many symptoms over the years which have all been blamed on my diabetes (even though my blood sugars have been excellent for many years) - nerve pain in left leg, almost permanent pins & needles and 'buzzing' feeling in my left foot, have been exhausted but put this down to all the nerve & muscle pain I've been experiencing, I seen the Dr about 2 yrs ago for 'palpitations' and was sent for an ECG which was normal, I have IBS, I've had problems with my mouth for about 2 years but was told to drink plenty of fluids and that I may have chelitis, I get cold feet and hands, get dizzy every day at some point but was told that was my BP medications, and suffer cramp even though I drink about twice as much water as recommended on a daily basis as my mouth is always so dry, and probably not connected to the B12 but I also suffer from short menstrual cycles and have been unable to concieve in the last 10 years with my 2nd husband but they could not ever find a cause.  As I am diabetic I was taking a high dose folic acid prescribed by the Dr of 5mg per day - I've since found out this can actually mask B12 deficiency (although I am unsure why).

Anyhow, from looking back in my records it doesn't look like this blood test was ever done and it makes me wonder if I could have had this for years unbeknown to me and whether alot of the symptoms mentioned above were due to B12 levels and not diabetes. 

So I am wondering how long it takes these injections to make a difference - I've had one shot yesterday and have 4 more to go over the next 10 days.  If these shots help with any of nerve pain it will make such a difference to my life, I've had steroid injections into nerves and tried all sorts of medication with no success.  Sort of hoping now that they've found this deficiency it may be the answer to a few of my medical issues over the last couple of years - although I'm not sure at 43yrs of age I suddenly want my fertility to return rolleyes but my husband would be over the moon lol

2

Hi mmc, sorry to hear you have been unwell for such a long time. My low B12 was diagnosed about fifteen months ago, so I had my loading jabs and then went onto the three monthly injections. I am still struggling a bit, still get pins and needles in one foot, but my tiredness is better. The only thing I've found is, if I get ill, a cold or flu, I am totally wiped out, and all the symptoms come back with a vengeance! I do have thyroid issues as well, plus fibromyalgia, so they probably aren't helping. Out of interest, have you had your thyroid function tested? Low B12 and underactive thyroid often go hand in hand. Best wishes Marion

3

Hi thanks Marion for your reply - just had a look to see how they test for thyroid and I've had FBC's done recently and my Serum TSH level was within normal range - result was 1.5 miu/L - I think thats the correct test for thyroid from searching online.

4

That sounds OK, it needs to be around 1, just under, or slightly over. Unfortunately, they don't seem to do the tests for T3 and T4 on the NHS, which are important if you want the full picture. I am waiting to get a private appointment to see an endocrinologist, as I think that's the only way I will get mine fully tested. If you feel you need more B12 than the three monthly injections, there are ways of supplementing. Some of us use sprays for under the tongue, dissolvable tablets/lozenges, and nasal sprays. I always feel I need something more after eight weeks, I'm like a battery slowly running down! I've just persuaded my GP to let me trial six weekly injections, for a short time. I'm hoping that will help a bit more. Good luck with your treatment, I hope it helps. By the way, sometimes the pins and needles will feel worse for a time when you first start getting the B12 you need. I think it's just the body getting used to higher levels again. Marion

5

I'll look into those other supplements - thanks for the suggestion.  I think I am only getting these set of injections then I have to wait 6 months and be retested - so sounds like the effects of the injections will wear off long before I am retested - but at least I suppose it will give a clearer picture of whether this is a true deficiency or a one-off bad result.

6

hi mmc. so sorry to hear ur symptoms have been put down to diabetes when, in fact, it's most probably due to b12 deficiency or a combination of both. it seems ur one of many.

in respect of the 'why' folic acid masks the neurological symptoms of b12: this is not well understood by the experts. as far as i understand from the book 'Could it Be b12' by Sally Pacholok & Jeffrey Stuart (2011) & from other reserch papers, it's hypotheized (not proven) that it's 'possibly' a compensatory mechnaism at work in the body. b12 deficiency was once treated (prior to the 1940's) with folic acid and the symptoms/incidence of b12 deficiency escalated massively as a result - hence the connection.

how long to see results is another 'non black & white' answer. timeline for results are very individual. many factors are involved, from the length of time u've had the b12 def., to the degree of nerve damage sustained, to how depleted ur b12 stores are, how quickly ur body's capable of replinishing those stores, to how well u absorb & utilize the b12 replacement therapy and not least ur indvidual bio-chemical make up & age, amongst other factors, play a role. it varies massively from person to person.

yes, b12 def. is one of the reasons why females have trouble concieving. in respect of the standard test completed by GP's to diagnose PA/b12 def. - they usually check antibodies to Intrinsic Factor (IF) & the Parietal Cells in the stomach lining. these 2 test are rather unreliable, yielding false positives/negatives up to approximatively 50% of the time. they should check for 'Coeliac & Chron's disease. these are also autoimmune conditions, as is PA. unfortunately, auto-immune conditions tend to present in clusters & are worth treating promptly before too much damage is done.

.

as Marion has advised, it's important to have your thyroid properly checked out. u would need to have T3 & T4 levels checked. the TSH test is very non-specific & can give 'normal' results, eventhough ur body may not be converting T4 to the active form T3. my GP did do this test for me, but that was after she tried to fob me off & realised that it wasn't washing. it's certainly worth requesting it.

it's worth doing ur research & getting up to speed with the vagaries of PA/b12 def. as ur Doc will only have the bare necessities in terms of info to hand. have a look at the 'Health Unlocked' website in the PAS section. it's very accessible & the on-line forum gives excellent support & advice.

btw, once i started b12 therapy my severe IBS improved immediately & massively as did my (awful) memory/cognitive faculties/energy etc. it made a massive difference to my general health & well being.

all good luck with getting it sorted.

Caitlin.

7

Caitlin - thanks for your knowledgeable response, alot of it sounds very confusing, but I will look into things a bit more now that this has come up - do a bit of research, I think our GP practice follows the local Hospitals algorithm for abnormal B12 results - so I don't think I am going to get any further tests or follow up appointments out of them until the 6 month ones are due and if the deficiency continues then maybe they'll look into more of what you suggest.  If my IBS improves after these shots that will be an added bonus although I think the shot has initially upset my stomach.  I was tested for both Coeliac & Crohns as part of my IBS diagnosis & treatment and I've been given the all clear on both of those although that was about 5-6 years ago now and I struggle with keeping my weight down (even on the slimming world plan) so I don't have any weight loss symptoms that would suggest either of them.

 

8

Hi again mmc, just wanted to say, if you feel your symptoms are getting bad again before this six month test, do go back to your Doctor and ask to have the levels checked again. I don't want to frighten you but Low B12 can cause permanent nerve damage if left untreated, or under treated . If you check out the Pernicious Anaemia Society website, there is lots of information on there. Hope all goes well for you. Marion

9

Hi there.  Sorry to hear you have been through all of this but like yourself I'm new to low B12 too.  I've recently finished my load up injections and have to say, my leg pain has gone.  I tore a muscle over a year ago and although it got better I kept getting real bad aches in the muscle.  I also had fuzzy dizzy spells that used to worry me and my memory was failing me.  I thought I had the onset of Alzheimer's as my dad had that.  My bones don't ache like they used to but since the injections I've had a lot of blind spots or sore lumps come up on my head.  I understand reading some of others comments this can occur.  I'm not much help other than sharing symptoms which I found was helpful after reading what others had.  It made a lot of sense what had been happening to me.  I do hope you feel better soon.

10

hi mmc. yes, unfortunately the whole b12/PA scenario is a bit of mine field. i found it terribly confusing in the begining. the best way to get some clarity and advice would be a phone call to the PAS - 01656769717. they'll be familar with the short comings of the GP's knowledge in respect of b12 treatment protocols.

the tummy upset post injection, could be due to the 'healing process' kicking in. often existing symptoms temoprarily exacerbate & then settle down. i still get skin problems when i have my treatment. there's also a possibility that ur weight will drop as the b12 can speed up ur metabolism & reduce one's appetite. it's a bit of a voyage of self-discovery.

the best of luck with it.

Caitlin.

11

hi sharon. just read ur post and wondered if u had ur vit. d levels checked coz of the bone pain u mentioned. low vit d levels are often found alongside low b12. might be worth having it checked.

Caitlin

12

Thanks all - lots of information to digest, got my second shot coming up tomorrow.  

Interesting to know that the memory stuff is a symptom, I just thought it was my age but I've had alot of short term memory loss over the last couple of years - and I keep forgetting really simple words and end up having to describe the word I'm trying to think of and having my family think I'm hilarious for forgetting the word!

13

Hi

I have been unwell for two and half years now, i moved house and my  new DR did a blood test and found my B12 levels were extremely low again, i had about 7 blood tests for various things with my old DR and each time my B12 levels were low, and i wasnt even told i had a B12 defiency.

I had the two week shots of 3 injections  then 12 weekly, but to be honest i got to 8/9 weeks and the fatigue kicked in again so my Dr has said, even though my surgery only give the injection every 3 months i maybe able to have it every 10 weeks.

I dont feel to good after the injection the following day, BUT two days later i feel great like a massive burst of energy, no pins and needles, not foot pain no fatigue.

So what ive started to do is plan anything i need to do strenous like decorating gardening, etc till after my injections, that helps.

You will feel so much better after you have had your large doses over the two weeks.

The B12 gets stored in your liver and slowly releases over 12 weeks, but some people like myself get to around 8/9 weeks and feel they need it sooner.

Hopefully your DR will prescibe it earlier for you if you need it before the 12 weeks. It is a medical condition that seems to be quite common yet DR's arent picking up the symptoms and treating their patients for  B12 deficiency.

Hope you get on ok, it is for life unfortunately and also i find eating every couple of hours helps makes you not feel so tired.

Julie