Mystery bloods

[Thamesambulance]

Hi I've had problems with my bloods for ages. Probably 5 years now. I've had 3 blood transfusions also a Iron infusion plus B12 injections and still feel rubbish. Dr's can't seem to get to the bottom of my problem. I'm front line Ambulance crew so I'm tired anyway. I've had cameras in both ends to no avail. I think I have pernicious anaemia but my GP doesn't. Don't know what the next step should be. Anyone else have these problems. My age is 61. Thanks

[Nackapan]

Are you having b1e injections regularly?Hax tour fokate ferritin vit d snd fill iron been checked?

Sometimes it's finding the correct dakkg maintenance for you.

Has your thyroid Bern tested?

Hopd you get some answers to stay in work.

[Thamesambulance in reply to Nackapan]

Sorry can't understand your post

[Hidden in reply to Thamesambulance]

Hi and welcome to the forum.It's very difficult to answer you question.

Firstly you need to get hold of your blood test results, this would give us more information.

Are you on any medication? What is your diet.... meat eater, vegan, or vegetarian? Do you have other symptoms ?. Pins and needles or numbness?

Sounds like an interrogation, but more information would help.

Best wishes

[Thamesambulance in reply to Hidden]

Sorry. My Doctor just tells me what I need to do. I'm a meat eater. I'm on iron tablets and blood pressure tablets. Also my feet have been aching for ages. But I am on my feet all day while at work. I feel ok but always tired. I've also had Covid twice so maybe i have long covid. My doctor isn't very helpful to be honest.

[Hidden in reply to Thamesambulance]

Like most people on here we trusted doctors and had faith in them. Unfortunately in reality things don't always work that way. You can have a blood test and you could be one or two digits above baseline, if say your iron comes back say 19 in the range of 10 to 240 you are still low, but if you know this you can then up your iron. That's why we try to impress on people to get blood test result.Having covid obviously has affected you !

Even the pernicious Society have pointed out many of the symptoms mimick P.A.

My advise would be get printouts of your blood tests.

Secondly have acidic drink with meals (apple Juice, apple cider vinegar) you need acid in your stomach to be able to breakdown food and absorb vitamins.

(Have some red grapes in your lunch box)

How often do you get B12 injections ?

Sorry to say but you need to take care of your health and not leave it to your Doctor. Harsh but it's your life and you have to be more proactive.

[Thamesambulance in reply to Hidden]

I had 6 injections To start with and now I have one every 12 weeks. Forgot to mention my Dr put me on Vitamin D3 capsules. 4,000 Iu a day. I've stopped taking these and I do feel better. I will call my GP tomorrow to ask for another blood test. Not sure about my aching feet though. I will put some red grapes in my lunch box. Thanks

[Hidden in reply to Thamesambulance]

You might find that Injections every 12 weeks is not enough !Most people here are also in the same boat, that is why we buy B12 from Germany!

You have that option, B12 plays havoc on the body

Also make sure your folic intake is good !

Hope you improve soon.

[Thamesambulance in reply to Hidden]

Thanks. I have a tough job as well which probably doesn't help. I'm front line Ambulance crew. Hopefully I will improve. I will try and change my GP as I've lost all trust in her. Take care.

[Hidden in reply to Thamesambulance]

I am afraid most GPs are the same where B12 is involved, all you can do if you don't want to inject yourself is try and get Injections more often, explain to her your job (she will know how exhausting it is) and that 12 weekly Injections are not enough. Explain about your feet .... (that is one area of the body it affects most).

You can buy books on Amazon by dr chandy, martin hooper and more they are very informative are very reasonably priced. Worth investing in !

[Thamesambulance in reply to Hidden]

Thanks for all your feedback.

[FlipperTD]

Scientist, not medic.

Iron deficiency is a symptom, not a disease. It sounds like you have [or have had] a very significant problem, and although I can't give advice, I'd be looking at the cause of the deficiency, because something's definitely going on. Your job is very demanding, and the general state of your health isn't helping you.

Good luck.

[Thamesambulance in reply to FlipperTD]

I've had every test done. Camera's in at both ends. I've even swallowed a pill camera. All is well inside I've been told. Don't know what else I can do to be honest. Apart from listening to my Dr. I've been having these problems for over 5 years now. Maybe I'm just getting old. I thought 60 was the new 40. Take care

[jimmel196]

I'm a retired paramedic in the US so I know to well of the long hours (we did 24 on 48 off) and exhaustion you speak of. It sounds as though the burning sensation in your feet could be neuropathy. I would ask for an IFAB (intrinsic factor blocking antibody) test. This test, if positive, will rule in pernicious anemia however, if negative, does not rule out pernicious anemia. I knew very little about PA prior to my diagnosis but have learned a wealth of information on this site. Good luck to you.

[Thamesambulance in reply to jimmel196]

Thanks for the heads up

[Cherylclaire Forum Support]

If you have had a lot of tests without any conclusions (yet) then someone is pushing for these and believes you to be very ill, trying to find answers for you. Assuming this to be your GP ?

Get a copy printed out of your blood test results. It might help to see what was and is going on with vitamin D, vitamin B12, folate and ferritin.

Nackapan asked if the above plus full iron panel and thyroid have been tested. and whether your B12 injections are regular and whether the frequency of your maintence injections is sufficient.

Interested in why you think this is PA at the root of your problems. Have you got a family medical history of PA or other autoimmune conditions for example ? Also interested in why your GP does not think it is PA - has she got another condition in mind ? Long covid ? Have you asked her about this ? You may have more faith in her if you understood what she is planning and why.

PA is not easy to diagnose but nor, for the same reason, is it easy to rule out. An Intrinsic Factor antibody negative test result cannot rule out PA.

Cameras both ends miss out a middle bit - small intestine. Have you had a SIBO breath test ? Small intestine bacterial overgrowth can rob you of B12 plus other vitamins and minerals.

Have you had MMA tested ? Methylmalonic acid should, once B12 repleted by loading dose, hvae gone back down to within range. If there is a problem with B12 link with MMA , or insufficient B12 in bloodstream to link with, MMA will build up with nowhere to go. I was given more frequent injections after mine was found to still be raised despite having conventional B12 injection frequency. Functional B12 deficiency.

You can see we are trying to help and might be clutching at straws in our attempts, but with a little more to go on, someone here might well come up with a test that would give you a chance to get your life back.

A frontline ambulance driver - difficult enough job without this to cope with. Also stress, shifts, lack of sleep and opportunity to eat well and properly are not going to help, whatever your condition turns out to be.

Stay in touch. Get those blood test results.

[Thamesambulance in reply to Cherylclaire]

Thanks you seem to know lots about my condition. I can't believe after 5 years I'm still no closer to being fixed. I had B12 injection about 2 weeks ago. I felt fantastic for about 3 days and now I feel like I never had an injection. You only get 10 minutes with the Doctor and trying to get an appointment is very difficult. I've seen consultants and even they can't get to the bottom of my problem. I feel like I'm banging my head against the wall as know body seems to have a clue. Thanks for your help. Kind regards Richard.

[Hidden in reply to Thamesambulance]

" I felt fantastic for about 3 days and now I feel like I never had an injection"

I may be wrong but I think you have answered your own problem.

You are not alone in needing injections regularly, some here inject everyday some twice a day.

How long have you been having injections ?

Some people need alot more for upto two years before they seem to recover.

[Thamesambulance in reply to Hidden]

Not very long. I had my 6 injections to start with and after 3 months I had another one. So 7 in total. The Doctor doesn't seem to bothered to be honest. You only get a 10 minute consultation unfortunately. So not much time to discuss your problems.

[Hidden in reply to Thamesambulance]

That's probably why you feel below par. You really need more injections especially in your job.If your doctor won't increase frequency then you could try b12 lozengers or think about self injecting. At the moment I inject two weekly, others every other day.

It takes some months before you find the real benefit, your body has been starved of B12 for several years

Google Jarrow b12 lozengers, it might help

[Thamesambulance in reply to Hidden]

I would love to inject more but I suppose I have to take my doctors advice. If I needed more B12 injections surely the doctor would prescribe them.

[Hidden in reply to Thamesambulance]

I am afraid that's not always the case.My hubby was borderline b12 difficient but didnt qualify due to passing a dementia test.

He had TIA and we had to go private for MRI scan and he now has demyelination of the spinal cord, was crippled.... I have been injecting him and now he is able to walk. That is why people are here,most doctors refuse more injections.

You can try BUT if they refuse please dont ignore the possibility of injecting yourself.

[Cherylclaire Forum Support in reply to Thamesambulance]

Not really - I am only beginning to understand more about my own. But having more of your own information is a good start. Blood test results can help.

You may get somewhere further with GP/ consultant if you keep a daily symptoms chart/ diary. Use a selection of your symptoms: maybe include the most frequent, the most severe, the most easily visible (can take photo) etc. Also mark on where you have been given injections. Hopefully a pattern will emerge which will show over time when injections stop being so effective. This will give you (and GP/consultant) more evidence that you are in need of more frequent injections than you are getting. The object must be to pre-empt returning syptoms. I am sure that any medical professional would want that for you.

I have found this chart useful and welcomed by good GPs/ consultants, and a bit of dismissive eye-rolling by the already disinterested - so you can decide for yourself who to bother sharing this information with.

I now self-inject every three days to control my symptoms as best I can.