Whilst I'm self injecting with B12 I still do have ups and downs. The worst part is fatigue. Before you mention it CliveAlive I do take Folic Acid 400ug daily 🙂. I inject 1ml Hydroxo every 2 weeks. (After experimenting)
When my gp says full test it's normally B12, Folic Acid, Vit D, something like full red blood cell count,,cholesterol and at most 1 or 2 more things.
Whilst I feel much better than when I was diagnosed with Low B12 I'm still struggling with the fatigue part.
I feel there's something missing.(as in some kind of deficiency my GP hasn't tested for)
I had low D3 which I took 2 courses of 20,000iu twice a week and that finished about 2 weeks ago.
I don't even know my Iron levels, how do I know about potassium and other things.
My GP hasn't even given me an IFA test, just asked if I'm vegetarian which I'm not and said u need injections for life.(I don't know if he's right) about me not absorbing even though I eat regular meat, chicken etc.
Someone posted their blood test results here and I was amazed at the long list of a blood test.
As my GP is not helpful when it comes to B12 and other things which have been on the very close to the bottom of the in range figure I decided he was a waist a time and started self treatment. I feel everything else has improved significantly but I'm still struggling with the fatigue.
From what I've read on here it could simply be low Iron levels.
My GP tells me my blood test is "everything under the sun".
I would like to know what is an actual Full blood test in UK and what am I entitled to get checked under the FULL blood test which is normally annually, because my GP claims he tests "Everything" but I doubt it.
It's not very pleasant to go and see my GP, he doesn't seem to want to know anything but like many other people on here I'm afraid to change as next I don't might be worse.
Sometimes when I have to work very long hrs I use Red Bull for the rescue (otherwise I couldn't continue working any longer), but not regular. I'm not much of a tea or coffee drinker either as far as stimulants go, don't smoke or drink alcohol.
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Ryaan
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Your blood test results would normally show the red count heamglobin, white blood count,RDW,MCHC, heamocrit, lymphocite,neutrophil etc. But as you have said no iron result. Your Iron and ferritin are so important when supplementing B12 as the B12 needs them just like your folate. There are many posts on here which would help you to identify your needs and others who have more experience than me.
I don't think there is such a thing as a full blood test -
there is a full blood count - which looks at all the different cells in your blood
There are tests for B12 and folate and other minerals - there is liver panel - ie there are lots of different groups of tests which can be ordered together or separately and many are grouped together for specific purposes - eg reviewing a patient who is having cognitive problems.
The body is very efficient at absorbing and using B12 so dietary deficiency is unlikely unless you are a vegan or eat very little meat/fish/dairy/eggs. Most B12 is stored in the ileum and the body stores B12 in the liver, releasing it into the ileum for reabsorption into the blood, in bile. A deficiency usually arises because something goes wrong in the ileum eg PA but there are other absorption problems - coeliacs, crohn's drug interactions, lower stomach acidity, h Pylori infections ... and some of them are treatable ... though some - including PA are quite difficult to diagnose as there isn't a 100% reliable test. Most likely cause of absorption problems is PA though and the treatment there is to use injections to get B12 into your body.
So if you have a silly GP like mine he won't do the tests which are needed.
He is Dr No !
So in a way you have to do your own research , get educated and then educate your GP as to what tests you need because you have certain symptoms and you need those tests for probable cause or elimination.
I don't think GP's like to be educated.
I've had a long and hard couple of years trying to find out what's wrong doing a lot of research (which should be in my docs head, I'm not a doctor). If I'm educating my GP then I should be GPPGGP ! (General Practitioners proper Guidance for General Practice). Lol
Thankfully SI with B12 and taking Folic Acid and D3 has helped me greatly.
I learnt a lot from this site.
Still learning.
Thanks for wonderful people like you I've made a lot of progress and I'm not going to give up yet even though I might book an appointment with my GP equipped with a blackboard and chalk, and educate him about B12 and what havoc it causes.
But then he may never give me another FULL blood test again in my life.
My old GP was great but he's retired, just after I had low B12 issues.
He gave me 1 weekly injection and carried on for 10-12 weeks and said just go by how you feel, if you feel you need 1 just come in and tell the nurse to inject you. Then Dr No came in !
The end.
But I still need to find the cause of such fatigue, I wonder what it is ?
Thanks Gambit.
Any idea of a daily recommendation for Iron, and because I was very low on Vit D, any recommendation for a daily D3 dose to maintain my level.
400 mcg folic acid sounds low, depending on how frequently you inject. On daily or every other day there are recommendations for 5mg.
You could try a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and maybe iron. I also need a wide range of amino acids from my diet.
All these are needed to make the extra B12 work and hence reduce the fatigue. You may need to use methylfolate tablets instead of folic acid too.
Good luck and keep trying. Eventually I found out all the things I need and have improved radically since.
I inject 1ml every 2 weeks and take 400iu Folic acid. Before taking Folic Acid I had breathing problems, felt like I'm not getting enough oxygen (had the 'sighs') and kept taking deep breaths but after taking 400iu for a few weeks that feeling was gone so I think I'm ok with Folic Acid (must be working as I never took or added anything else).
Yes I think I could do with multivitamin and minerals, but if I take them do I still need EXTRA folate, potassium, magnesium and iron or should the multivitamin and mineral (one a day) be enough ? (Wellman one day). There's also Wellman sport which has extras for energy.
I do think my problem could be Iron, although i don't know much about magnesium and potassium and was assuming the multivitamin should be enough unless you need higher than the daily recommendation which is in Wellman as a single tablet. My bones also ache which I think could be a lack of vitamin D3.
Although I don't take them yet, if feels too much to be taking multivitamin plus extra folate, magnesium, potassium and Iron plus D3.
I'm lost with all that.
I don't know if anyone else has noticed but I've lost a lot of weight since injecting B12 weekly for about 10 weeks then once every 2 weeks although I'm not overweight my clothes have gotten looser my trousers have all gone too loose. From 34 inch waist I'm down to 32 inch just by injecting with no diet change which isn't too bad anyway and no exercise added.
Thanks for your reply.
Let me know what you think of the above, if you can. It will assist me further and I appreciate your help.
Thankyou.
(It's a struggle to get diagnosis from my GP).
I've had far more help and understanding from the people on this forum.
Your Wellman should cover most of what you need but it all depends on what your body is absorbing properly and what you need more of. It's not an exact science, even with blood tests.
Different tablets have different forms of the different vitamins and minerals which can also make a difference to how they are used by your body.
As your body uses the extra B12 to repair the damage caused by the deficiency it needs more "extras" to rebuild cells and clear toxins so you may well need more folate, potassium, magnesium and iron, plus vitamin D, on top of what is in the multivitamin and mineral supplement.
The Wellman one doesn't provide these even at a 100% rate required by a healthy person so you may well need extra.
I take Tesco's A-Z multivitamins and minerals because they seem to have one of the highest rates of everything and 2 of these a day, plus extra potassium, magnesium and iron works for me; but I know my body has become very inefficient and can't suggest anything specific to you.
I strongly recommend that you Google all these minerals and vitamins to see what the symptoms of deficiency and excess are so you know what to expect and how best to get them from your diet and supplements.
Does the fatigue reduce if you increase your injections and folic acid? If you need it, you need it!
Once you have done your research try adding in one thing at a time and see if you get a positive response.
Remember also that it is all very complex and generally all the nutritional components are interdependent so if you are short of just one thing, the others may not work without it.
Good luck with finding out what your body needs and don't give up!
One GP I saw a few years ago told me I had had ALL the blood tests (and that I didn't have cancer - it was news to me that she had suspected cancer - I didn't). I found information online about the different tiers of blood tests in the NHS (can't find it now - seems to have disappeared) and deduced I hadn't in fact had ALL the blood tests. So I asked her about this and she was furious. She told me I had had the 'first line' blood tests. She then asked me 'how I knew all this'. I explained. 'Aha,' she said, 'so you READ!' As if this was a very undesirable thing to do. She then informed me that in her opinion, I was making up symptoms I had read about.
In hindsight, I should have complained, but instead shortly afterwards I left the practice.
* And however good or bad your GP, I understand tests are going to be rationed.
I was going to leave but just had a thought the next one might be worse as she has agreed to half the things I told her and increased my B12 from 1 every 3 months which was doing no good.
I had to do a lot of research on B12 and told her most of my symptoms are due to not enough B12. I haven't told her about SI but I'm trying to get her to give me 1 a month, ideally 1 every 2 weeks but I don't think she'll agree to every 2 weeks so SI at the moment to see how my symptoms go and work out the correct dosage by keeping a diary of injection frequency and re appearance of symptoms.
(There are similar sites in many other countries.)
Blood tests already are rationed in reality. We have seen refusal of more than one vitamin D test a year, thyroid FT3 and FT4 tests are routinely not done, even when requested by the doctor.
Yes. I should have said: rationed even more than they are already, likewise referrals.
I wouldn't like to say if feeling tired is normal other than I have just had a bad patch feeling tired, sleeping during the afternoon at the drop of a hat, not really bothered about doing much but able to do the few things I must. Over the past couple of years since starting B12 injections and doing them myself this has happened a couple of times and there doesn't seem to be any pattern I can detect. I find I am usually able to cope very well with tasks I cannot avoid so put them down to boredom or ennui. My daughter, who has was diagnosed with PA 21 years ago and has self injected for 15 years now has similar problems but usually just works her way through them.
My wife will generally badger me to do the injection as she can tell me when I need it, usually about 10 weeks after the last one, when I am getting even more forgetful than usual, looking drawn and weary, being stubborn and argumentative and a general pain in the rear. She was trained in nursing as a teenager so would happily do the injection for me but I like to have control of this nuisance, however it does take a bit of screwing up of the courage to actually sit and shove a couple of inches of cold, sharp steel into your own thigh muscle. The results are usually very prompt so well worth it.
No matter what the results of B12 injections are, if you need them then the after affects are going to be much better than the alternative.
I think I would avoid those myself as there is an massive load of sugar and caffeine in those things and I was on the cusp of diabetes when tested a few years ago.
There is no advantage in getting older. I am trying to avoid it but it just keeps creeping up. Just now I can't give in as I seem to have acquired the unofficial post of crumblies taxi. I am spending more time in the hospital these days with one or other ailing post-septuagenarian visiting one of the clinics. And somehow I think it is just going to get worse. Perhaps if I went on the fritz they might find walking much easier than they thought.
I was referring to the demands by the more elderly than me needing transport and accompaniment to various hospital or other medical departments. It usually happens that when I am in need of a lift there is no-one to oblige.
I think I was just venting some pent up resentment in that former post.
I inject twice a week.. Isn't 400iu Folic Acid 4mg ?
I don't know about daily recommendations, I've just been reading on here for a few months and a lot of people take 400iu daily whilst injecting long term.
I also don't know why you need more folic Acid if your injecting.
From what I've been reading here. all they say is you need more Folic Acid because your injecting B12 more frequently so in order to process the B12 you need more Folic Acid.
I don't know if it's true either, but my gp gave me 400iu Folic acid and I SI but haven't told my gp.
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