Sorry to be so uninformed but I thought the PA (can't spell the type of anemia) could be from low b12 EVEN THOUGH it tests normal (the b12 I mean). My daughter has been low on iron for a long time. Iron pills don't work and cause extreme constipation. She was given an infusion of iron...we're waiting a month to see what happens. The doc said 'Why is the question' SMART DOCTOR! I suggested in a letter that b12 may be low (falsely reading as normal). So what tests can I expect/ask for to see? I'm confused. A lot of people shorten things or say t2 t3 etc. I have no idea what this is. cheesh. If anyone has time for a noninformed question, I'm here and greatful!
Merry Christmas, Happy holidays.
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Lynne0762
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1. Serum B12. I would have them repeat this test, and if you would report the value as well as the lab reference range, it would help.
2. Methylmalonic Acid: if this is too high, it often indicates low B12.
3. Homocysteine: If this is too high, it can be from low B12 or a couple other things.
4. Folate. Because a low folate can cause some of the same problems as a low B12, it's good to have that measured at the same time you are getting the other tests.
If you report the levels of all 4 above, plus lab reference ranges, it would help.
There are still other tests, but I think the above is the place to start.
And you are correct, pernicious anemia is the term used to describe anemia due to low B12. It often is used to indicate not having enough "intrinsic factor" which is needed to absorb the B12 adequately, but it can be used to indicate any anemia due to low B12 for other reasons than intrinsic factor.
Hope this helps.
What doctors state as ' normal' and what is ' optimal' are often very different. Always obtain a copy of blood results so you can do you own research ( I.e post here )
The T3 and T4 you refer to are blood tests for Thyroid function. Their interaction is pretty complicated ( I find it complicated anyway) but there are some great explanations on here. Getting your head around all the different blood tests looks a nightmare to start with but I got help posting my results here and on the Pernicious Anaemia community. B12 problems can be caused by PA but other things as well.
I wonder if asking for a referral to a haematologist might help your daughter? I found once I got referred to the local hospital I got answers pretty quickly.
I hope your daughter does not have Pernicious Anaemia as it is a very serious condition if diagnosed and not looked after properly.
However, in these modern days we, who are diagnosed with PA, get a three monthly injection of B12 which continues for a life-time. There is a B12 Deficiency forum and you can also ask answers from them.
If condition is not looked after properly (means we, personally have to) take care of our condition as best we can because it can lead to more serious conditions.
Don't worry about spelling as it isn't easy for P.A. which is the short form of pernicious anaemia. This is an excerpt:-
People who have pernicious anemia can't absorb enough vitamin B12 from food. This is because they lack intrinsic (in-TRIN-sik) factor, a protein made in the stomach. A lack of this protein leads to vitamin B12 deficiency. ... Often though, vitamin B12 deficiency due to other causes also is called pernicious anemia.
My mother also had P.A. After years of getting B12 injections from her GP, she was told her that her bloods were 'fine' now and she no longer needed injections.
My sister and I thought this was great and were happy for our mother. Little did we know the doctor had dealt a 'death sentence' by withdrawing B12 injections. My mother then developed stomach cancer and died - it is not an experience I would like any other member of any other families to experience.
When she was admitted to hospital I phoned the ward and stated my mother 'HAD' pernicious anemia and was then told that once diagnosed it did not resolve. So my mother died through a doctor's advice to have no more B12 injections.
The worst was pleading for proper pain relief as my sister and I were at the brunt of her care. We didn't want her to be in hospital and at least were fully aware of the circumstances.
I said to the doctor, we know my mother is dying so why are you so nervous if she has an overdose when she doesn't even have sufficient to fully relieve her pain.
Eventually because we kicked up such a fuss, pain relief was provided. How many people in the UK have unnecessary suffering at the latter stages of life. It doesn't bear thinking about.
I agree with you completely. My late mother in law was in hospital ( taken there from her care home). By the time we got there she was already undergoing blood tests and X-rays. We were told she had lung cancer (she was 96 years old), and already had several other ongoing conditions. We were promised that they would sort all her medications out before she was discharged. This was to enable her pain to be managed. We discovered that she was sent out with no additional pain relief, in fact her last days were spent with nothing stronger than paracetamol!
No wonder she was in so much pain. I was furious that she had been left to suffer, no one at the home told us that her meds were unchanged. Prior to her care home admission, I had taken care of all her medication and visits to the doctor. She was so badly let down at the end of her life, and I felt awful that I had believed what the hospital promised.
I agree - it shocked both my sisterand me and we do expect the Professionals to be experts in dealing with sick/dying people instead of the distress to the ill person and the worry of the family members. We don;t expect us, the family, to do the pleading or the care the person requires.
I'd contact an attorney since you know this was an error on the doctor's part. It won't help you much as far as your mother is concerned at this time but it will stop this practice for others. Also a good lawsuit may help you heal. Going by incidents I've experienced, it can help with closure. Just my opinion.
to bring attention I'd check with an attorney anyway. I think 5 years is the time limit to file an action. If the doctor died, his estate is still there. I'm sorry for your loss. Thank God she is not in pain and suffering from doctor's ignorance any longer. I suffered pain I cannot tell you how much because of the govt. fussing about opioids but finally once I passed drug tests for 2 years I got what I needed. No longer can take them because of chronic constipation because of them but I NEEDED them. YES kick a BIG FUSS anytime your loved one or you is not treated properly. Threaten a lawsuit. It worked for me after surgery they gave me 5mg oxycodone a day. My husband went in to the doctors office and said he wasn't leaving til given some REAL pain relief. He complied. Why do you have to be a **tch to get cared for? Well you do. Too bad. As far as your case, I pray for peace for you. Take care.
I am sorry you have also had suffering and only the person or their families are truly aware of how awful this is.
Thank you for your comments and 25 years have now passed but we were so relieved when proper pain relief was finally given.The memory never diminishes.
I am sure - I sincerely hope - that attitudes for the dying have changed to be more compassionate.
My daughter got an infusion of iron and we'll check her blood in a couple more weeks. This hemotologist seems to be on it as his question was 'why?' I think he intends to find out.
If your daughter is ever put on oral iron supplements in future, she should also take high dose vitamin C with each tablet (say, 1000mg per iron tablet, although there shouldn't be a problem taking more). It has two purposes.
1) Vitamin C aids iron absorption.
2) Vitamin C in high doses causes diarrhoea. If it is taken in conjunction with something that causes constipation (like iron) then altering the dose of vitamin C up or down as appropriate can help to keep constipation at bay.
You don’t mention how old your daughter is. That is important. If she is menstruating, she could have very heavy periods & have iron deficiency anemia. The infusions work faster than oral iron tablets, are better absorbed by the body & don't constipate like the tablets do.
Another fairly common reason for iron deficiency in young women is an eating disorder.
The “ normal” range for some of the lab values are INSANE! For example, ferritin is 11-300. Seriously??? I’d have to guess that someone with a ferritin level of 11, will feel VERY different than someone with a ferritin level of 300!!! Lab values are a GUIDE for drs! The patient’s symptoms ALWAYS need careful consideration in ADDITION to test results from the lab!
There are foods you can eat rich in iron that are better absorbed if eaten in conjunction to foods high in Vit C.
My B12 levels have been terrific with the injections. But I still feel exhausted beyond words! Turns out my iron levels are quite low. My body isn’t absorbing iron properly. That goes along with pernicious anemia. Many providers don’t seem to realize the connection therefore treatment with B12 alone doesn’t make me feel better! I apparently gave other malabsorption issues!
The other labs you list, T3, T4, these are thyroid tests. Google hypothyroid. You will find the symptoms, the lab tests, the lab values. Even if you don’t understand what it all means, definitely have a discussion about thyroid with yr daughter’s dr!! Undiagnosed hypothyroid is a VERY common health issue!! Best of luck!
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I'll keep that in mind. Thanks.
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