So I posted on here for the first tim... - Pernicious Anaemi...

Pernicious Anaemia Society

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So I posted on here for the first time the other day....

Peppermints profile image
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You were all so helpful and I've had a lot reading to do. This has opened up so many avenues that I'm now a little confused and have some questions or actually maybe I could post my blood test results and what they have been previously and see what you guys think.

I have my own ideas but I just want to know if I'm on the right track

So with that in mind

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Peppermints
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14 Replies
Gambit62 profile image
Gambit62Administrator

HbA1c is a test for diabetes so you might be better off asking on one of the diabetes fora. HbA1c is a protein that can be used as a measure of how well your blood sugars are controlled. Its still within range. It will vary. If you are concerned try cutting snacks, and refined foods but otherwise speak to your GP/ a medical professional.

Peppermints profile image
Peppermints in reply toGambit62

Some more

🙂🙂

Peppermints profile image
Peppermints in reply toGambit62

Some more

Peppermints profile image
Peppermints in reply toGambit62

Another

Gambit62 profile image
Gambit62Administrator in reply toGambit62

Peppermints, results look as if they are mainly in range. Tests are done to see if there is anything out of range and then follow up on that. Most tests vary with a range of circumstances and some people will be okay outside the normal range, so worrying about minor movements on those isn't going to be helpful.I understand that you are feeling anxious but you really would be better off talking to a medical professional rather than posting everything on a forum.

Peppermints profile image
Peppermints in reply toGambit62

Ok. Thanks for the advise. I do have an appointment it's at the end of june. I just wanted to go in a little more knowledgeable and thought this might be the place to get some reassurance and much needed advise after being passed from pillar to post from GPs- who I had to ask for these tests- physio, MSK and waiting for an appointment with neurology-for the last year.One department doesnt speak clearly to the other and its difficult to get the help I need. I've been offered medication ranging from codeine to antidepressants to nerve blockers which I'm reluctant to take if my symptoms can be eased with lesser medication.

I, like many others on here are having to help themselves with test results privately to get treated correctly so all I was hoping for was some understanding advise from people who have been in a similar position.

Gambit62 profile image
Gambit62Administrator in reply toPeppermints

Thanks Peppermints - not saying that the medics are perfect but I would advise you to be careful. The purpose of this forum and of the HU platform is to support each other but you also need to be aware that we are not medical professionals and whilst admins do try to remove comments that we think are unsafe there is only so much we can do. Good diagnosis is a mix of listening to patients and looking for supporting evidence in the form of test results and other information. If you are anxious then that makes communicating difficult. Getting prepared is good but I'd suggest you focus on looking for something that looks out of the ordinary and go prepared with questions that you want answered.

You might also find it useful to look at a sight that is aimed at helping patients understand what their test results mean.

This sight might be a good starting point

medlineplus.gov/lab-tests/h...

Gambit62 profile image
Gambit62Administrator in reply toGambit62

and this is another site that might be usefullabtestsonline.org.uk/tests...

Peppermints profile image
Peppermints

😊

jade_s profile image
jade_s

Did you delete the images peppermints or did the admin? I understand your frustration with doctors, for years i went from bad to worse with no answers. I think Gambit was just trying to warn you that since none of us are doctors, if you get bad advice (it does happen) it's difficult for the admins to constantly monitor (they do have their own lives). Not that we've all gotten stellar advice/diagnoses from our doctors as you know ;) And just keep in mind we are mainly b12 related here, some thyroid and perhaps a few other autoimmune diseases.

I'm curious what your theory is? Is it b12 related or something else?

Peppermints profile image
Peppermints

So many things can cause vitamin b12 deficiency and vitamin D deficiency. I was wondering, with my blood test results, if someone could point me in the direction of where mine started? At the moment, all the gps have said is to have shots and have prescription vit d. If they do not treat the root cause, the b12 issue will just come back, and as we all know, its horrible. This is the worst I have ever felt, all down to a lack of a vitamin! I have neurological disorders that I've had MRI scans for, and one gp is saying is my disc bulges and the specialist (neurology and MSK) are saying its b12. They said I had to go back to my gp to get a more comprehensive blood test done which I did. I can now compare and contrast the results from previous blood tests (due to having the nhs ap) and cant believe that the doctors havnt seen the decline in other areas and put 2 and 2 together. All of the above has been long standing (I think u do have issues in my spine) but the topical numbness is b12.

This is being sorted with shots but if they dont look at ny kidney low result, low white cells and my hba1c level with high cholesterol, how can they know that my b12 symptoms wont come back like everyone in here mentions-they still feel rubbish after they finish their shots etc.

My reasoning for putting in my blood test results were that I was hoping that someone else would be in a similar position and say "yes, I went back to my gp armed with this info"

I was just hioing for reassurance that someone else had underlying issues, not just a b12 deficiency.

I dont want to be poorly or have something wrong with me. I'm just making sure that the gps do their job and not just say, you're in the normal range.

Yes I'm in the normal range but look at the results from my previous and things have gotten worse.

I hope all of this makes sence.

Also, after 22 years of work and never being off sick (exept for flu) on Wednesday I had to call the gp to get a sick note. I've had to have a month off sick because of how rough I feel. I want my body to give the shots a chance.

It's crazy.

Thanks for listening

jade_s profile image
jade_s in reply toPeppermints

Hi Peppermints, unless you have had PA antibody testing and/or investigation for other B12D causes like parasites, or other known causes like being vegan or stomach surgery, you won't really be able to see the root cause in blood tests. The bloods will only show the effects of B12D, not the cause.

I think for many of us, the b12 deficiency IS the root cause. Whether that is due to Pernicious Anemia or genetics / functional deficiency. But of course other issues that might be the "root cause" of B12D, such as parasites, use of nitrous oxide, GI disease, GI surgery, alcholism, veganism, use of proton-pump inhibitors or other acid reducing medication, metformin use. You can find a similar list here: b12deficiency.info/whos-at-.... But again usually you won't see these root causes in the blood. You can ask your doctor for further followup to see if any of these is the cause.

This is being sorted with shots but if they dont look at ny kidney low result, low white cells and my hba1c level with high cholesterol, how can they know that my b12 symptoms wont come back like everyone in here mentions-they still feel rubbish after they finish their shots etc.

Yes absolutely true. But, no one can know. Many of us do need more frequent injections, so if you're on say, 12 weekly, it could just mean that you don't get them frequently enough, rather than some other issue being the cause. For HbA1C and cholesterol, I gave some suggestions on your previous post. If you have autoimmune B12D, that is, pernicious anemia, then you are more likely to have other autoimmune diseases, such as hypothyroidism / Hashimoto's. For the Hba1c, like I said I would wait a few months and retest after B12 treatment has started. It could normalize. Or test blood sugar 1 and 2 hours after meals, at home. That will immediatley tell you if hba1c is high because of blood sugar or as a side effect of distorted red blood cells commonly seen in b12 deficiency.

Not sure if I answered your questions, but I hope this helps. I hope you manage to rest a bit - sleep and rest are very useful.

Peppermints profile image
Peppermints in reply tojade_s

It really helps. Thank you. I have the confidence to ask for the tests I need. If they come back negative and or back to normal range, then so be it. I just know a few tests cant harm to rule things out.Talking on here has vented some of my frustrations and upset about having to take time off work, being so totally exhausted and grumpy with my little family.

So, thank you to you all😊😊😊

jade_s profile image
jade_s in reply toPeppermints

Sounds like a good plan! :) Report back if you have new results. Glad the venting has helped. You will get better on injections, just keep at it and get them as frequently as needed. Your family will see a positive change soon. :) Good luck and best wishes.

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