I've been si eod for 18mnths now, I have had blood tests to keep an eye on ferritin, iron and folate every 4/5 months in that time,the results are checked by a private Dr who diagnosed me with PA after months of back and forth to gp feeling awful ( PA runs in the family)My iron has depleted now so I will have an iron infusion this friday, hopefully I will feel the benefits of the b12 again as the last 3 months I have started feeling ill again
I take 5mgs folic acid on the day of injection also vit d3 and k2 as I had cronically low levels, also thyroxine due to hashimotos
I joined a fb group at the start of this who have a protocol involving vit b complex, the dr I'm under the care of says this isnt necessary, also the group advocate 5mg folic acid daily.
My question is after a life time of trusting gp's that trust is gone after my experience of this horrible illness,I have followed the advice of the private dr rather than the advice on the fb group as after all the reading I've done, there isnt much to support the multi b vitamin protocal advised, infact too much b6 can be toxic, Some of these groups can come across quite dictatorial.
When you feel so ill and want to feel better but have very little support from your gp its so hard
Do any of you have any views or advice about anything more I can do to just feel like my old self ? If taking another vit b complex will help or not, I keep an eye on potassium levels too which I know is important.....I eat a balanced diet but not much red meat
My thyroid is ok according to recent test
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Charlie27612
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It is wonderful that you have a private doctor. If you are finding someone or a group quite dictatorial then I do think you know what is best. Generally, I live my life as block, ignore, delete, answer when bothered or immediate attention.
So, dietetics is biochemistry. How many of those on Facebook have qualifications in it ? Your symptoms are yours and yours only. It is a juggling act. Your Facebook friends obviously know your genetics, your age, weight, height, activity level, your medical history, any operations and the medications your currently take. It certainly is not One Size Fits All.
So do I, thank goodness for credit cards that pay for private treatment......I honestly think I would be bedridden by now still waiting for my gp's help.....roll on friday !
Reading even a couple of posts here, or one day's worth, it is clear that none of us are the same; are at the same stage or have the same symptoms or the same responses to treatment. If one injection every three months is unable to work for all of us, if tablets or sublingual sprays do not work for all of us, then it makes sense that 5mg of folic acid is not going to be our magic number either.
All Things Pernicious Anaemia -the title at the bottom of the right-hand column on this page under the heading Topics will eventually bring you to a survey, where you can look at the results of a poll in which those with PA were asked how frequently they feel they need B12 injections - this gives you an idea of the range : nearly 900 people responded. It appears that they were somewhat restricted in the amount of categories available, so you might assume that some have had to opt for the nearest category.
Personally, I have found that I now need about two injections a week to best control my particular set of symptoms, unless I have overdone things, or am recovering from an illness or been very stressed. Usually, these days, this works for me - but I would not recommend this frequency to anyone else, because I am aware that this is not always true even for me.
The most likely additional problems seem to be with folate, ferritin, vitamin d, thyroid. PA is an autoimmune condition and these can be accompanied by others - like psoriasis, vitiligo etc. There are over 100. Someone suspecting they have PA might see evidence of this in their family history. You said there is PA running in your family, Charlie, so a shame that your GP did not pick up on this. I was very lucky to have had an observant, experienced GP.
My folate and ferritin were never at dramatic levels - but were found to be low-range and hard to stabilise whatever I did with diet. My GP put me on 3 months of supplements for both, since my hair was still falling out and gums still bleeding after the B12 loading dose. After that, she monitored both for years, so could tell me when to supplement, how much and how long for, when to stop. My vitamin D comes on prescription along with Raloxifene as osteoporosis of the spine was found. This has improved - and is now categorised as osteopenia.
I don't have a PA diagnosis. I've had three IFab (Intrinsic Factor antibody) tests - all gave negative results. Of course, this does not disclude PA, but I'm quite happy to accept my GP's diagnosis of functional B12 deficiency. This was arrived at because she could see that the B12 injections were not giving the desired symptom relief - so she had my methylmalonic acid (MMA) tested and it was raised. Her diagnosis was confirmed by the testing laboratory because she had ruled out renal problems. Later, small intestine bacterial overgrowth (SIBO) was also ruled out by a fasting series of breath tests.
There are many causes of B12 deficiency. It's possible to have more than one cause. A vegetarian or vegan would, I'd imagine, have the same likelihood of having PA as the rest of the population.
Complicated, all this. We all have a different story but gaining individual control of symptoms is possible for most of us. It is not a cure, but does allow you to recognise yourself again.
I'd hope that your iron infusion will make a real difference to how you are feeling.
You may not have a helpful GP, but here there is plenty of help. I have found this forum to be invaluable.
One thing I'd add: you say that your thyroid is okay, having been tested. Two of my sisters have Grave's disease, an autoimmune thyroid condition. To ensure that I did not have any sign of thyroid problems, Marz advised me to have a full-panel thyroid test. Unavailable on the NHS, this cost me about £60 (a while ago now) as a postal finger-prick blood test with online results. This included two autoimmune thyroid tests: anti-TPO, anti-TG. Set my mind at rest. Thyroid was having a bit of a struggle at the time, but okay. If you are interested in this test, look for one that will give you these results as well as TSH, FT3, FT4.
Thankyou for your reply,its always good to hear from others that know how you feelI had a whole lot of blood tests at the start of this , I was tested for numerous autoimmune things 11 in all
I was under the hospital for a bit for my thyroid as gp couldnt get my dose right, I was all over the place ! Now I know about pa I realise so many of my symptoms were due to this NOT hashimotos ( palpatations, achy legs, weak muscles and the tiredness was beyond ANYTHING I had ever felt with thyroid over past 30 years
I hope once I get this infusion my injections will start having an affect again as they did at the start.
So many people just dont realise how important vitamins are and how they work in conjunction with each other, I can feel the change since I was given vit d and k2 my 'normal' (according to gp) levels were so low no wonder that was contributing to me feeling at deaths door
We have to advocate for ourselves now and I'm so glad I found the dr who has helped me these last 18 months
Glad for you too, Charlie. Still think your GP could have been more "on it" earlier.
About the importance of vitamins: I didn't even know there was a B12 until I was told I was deficient in it. I didn't know that I had osteopenia of the spine because you can't feel it. We rely on doctors, don't we, to tell us - and their education regarding vitamins and minerals is flimsy to put it mildly. You aren't going to look for what you don't know about, are you ?
Who will be the educators of future doctors and where is their knowledge to come from ?
Meanwhile, back to the present day : I'm expecting good things for you but it can take some time. There is an optimum balance to be had, even if it is changeable. Hopefully, you'll soon learn to be able to recognise what is required to maintain that.
I do have a little spark of hope recently, I also have a duplex kidney which is now needing another scan, I managed to get a face to face appt with a new trainee gp at the practice.She was very caring and concerned when she read my recent medical history, she wasnt surprised to hear I si and even said I wouldnt still be getting frequent injections if I was treated on nhs, I know this as my sister has suffered so much waiting for her 12 weekly dose.
The private dr I saw thinks I have been deficiant for years and it was getting covid in dec 2020 that tipped me over the edge, I havent been well since that really, I had multiple pulmunary embolisms which has also taken its toll.
Roll on this afternoon 😊 after all I cant feel any worse and hopefully I can start feeling as I did at the start of treatment
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