Hi there , please can someone offer me some advice I have been caring for my mum who has pernicious anaemia and back in 2017 her injections were stopped as her levels were 2000 which I understand is very high . My mums levels were very rarely checked again . Since that she has become very ill firstly she took nerve pain in her shoulder which eventually was helped with an injection though took a year ..
Since that mum has had several angina attacks she has become very lethargic we were in hospital in October due to severe asthma attack and low potassium levels . About two months ago my mum fainted in the bedroom . As I myself have under active thyroid and get my bloods checked as often as I can I do not have pernicious anaemia but I have to take B12 tablets as I know if my levels are not over 500 - 700 I feel awful .
I rang the doc about two months ago as by this stage my mum was hardly fit to walk and nurse tested bloods . My mums b12 had went down to under 200. The doc put my mum back in the injection and apologised for my mum not being monitored and having to suffer as much as she has done .
My mums levels were checked today and it’s 495 within range how is this normal ? My mums mood is so low she still has very little energy and gets breathless again .
Please can someone offer advice as I am at my wits end what to do to help her she is 82 years old it’s heart breaking to see her so down doesn’t want to eat either !!
Thank you so much for taking the time to read this and I appreciate any advice at all .. many thanks
Angela
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Angie56
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Your Mum’s health has been so appallingly mismanaged by her doctor that I feel like weeping with anger and frustration for her.
There is so much wrong that I feel your best course of action will be to join the Pernicious Anaemia Society and ask them to intervene on your mums behalf. This needs to be done as a matter of urgency.
I wish you luck in securing the right treatment for your Mum.
Thank you for your kind reply - yes I followed the pernicious society just when I sent the message . My mum is not well doctor has apologised though I have no idea as to when she will be well as her levels are not what they should be yet !
The fact that the doctor is monitoring your Mum’s B12 levels when she has received an injection shows that the doctor is clueless as to correct treatment.
There is so much to be done from injection frequency (possibly every other day) to other blood tests (such as folate level) and prescribing folic acid. I really would be wanting the knowledgeable PAS to be speaking to the doctor if it were my mum so that all necessary treatments are given.
I really appreciate all your advice . I think they did check her folate and ferritin as I know it was on low side . Doctors do not seek to understand pernicious anaemia or thyroid disorders .
I am based in Northern Ireland I maybe should join the society as I know mum needs help .
Angie56. I agree with JanD. All the guidelines state that monitoring B12 levels is not required once treatment with B12 injections has commenced. Serum B12 levels are meaningless and tells,you,nothing about the effect of treatment or about the frequency of injections required.
B12 injections for PA are for life - and should never be stopped.
In stopping your mum's injections, your GP has forced you mum back into a position of B12 deficiency - the return of symptoms (and her deficient serum B12 level) is testament to this.
Essentially, she is should now start again in terms of the treatment regime for B12 deficiency. It is not sufficiency for her numpty (negligent) GP to simply give her an occasional jab when he thinks her levels are low. Shocking treatment.
At recommencement of treatment your mum should have the six x loading doses again (given over two weeks) and if she has neurolgical symptoms, she should continue on every other day injections until nomfurther improvement.
Also worth checking her floate, ferritin and vitamin D levels too.
As JanD236 suggests, the quickest way to get the correct treatment for you mum is to contact Martyn Hooper at the Pernicious Anaemia Society (telephone number on their website) and ask him to intervene with her GP. He has had a lot of success getting treatment re-instated when it has been withdrawn negligently. And GP's tend to act more readily when intervention and advice comes direct from a representative of a recognised and reputable charity.
Good luck. Let us know how,you and your mum get on.
Thank you so much for getting back to me and your advice . My mum has suffered so much and still is . Mum also had bowel cancer twenty years ago had part of bowel removed . The doctor who stopped her injections was not regular doctor though once my mums own doctor discovered this she said it should never have happened especially as part of Mums bowl has gone . I lost my job due to the stress and effect in my own health.
We were in Casualty a month ago due to pharmacist prescribing wrong tablet and putting correct label on wrong tablet . I spoke to the consultant who was not interested in b12 said he knew nothing about it and it was up to GP to monitor it .
A week later she got worse it was high sodium levels due to not having stomach tablet and taking double dose of cholesterol medication .
Mum also ended up with two clots in one leg which I believe was due to not having b12 injections .
I am scared to cause trouble though I don’t feel mum is getting correct help as my own consultant told me that I should be 500 plus in b12 and I don’t suffer from pernicious anaemia .
I would join the PA Facebook groups too.. A wealth of information, once you start injections your levels should not be retested as they will always be high
Angie56 - What does your mom eat? She shouldn't be getting blood taken out of her too often for testing as it takes about 2 months for the body to recover from what it lost and that can lower B12 as well as everything else. That is what happened to my mom - got blood work done in July 2018, then again in Sept. 2018. Too much, too soon. She is 81 now. She lost too much weight, weighs 100 lbs, has shortness of breath with little exertion. I just got a book called, "COULD IT BE B12?" An Epidemic of Misdiagnoses (The underground classic that has saved lives) You need to get this, you'll find some answers. God bless you and happy mother's day.
Thank you so much African grey I will look for that book . I am so sorry to hear that your mum has had to suffer so much . Mum somedays will eat well and then others very little as she has had months of nausea doctors don’t seem concerned about that . She has lost over a stone and her mood is very low sometimes . She suffers from Angina attacks and asthma as well which all have got worse since been taken off B12 .
I think I will join the pernicious anaemia society also .
Happy mother’s day to you too and thank you so much and hope your mum has some relief soon as it’s so cruel having to suffer . God bless ..
Thanks Angie56. Your mom has nausea - can she have some ginger tea or peppermint tea? She has chest pains also - needs all the B vitamins. Must take them with food because if taken on an empty stomach it will cause nausea and may want to vomit. Hawthorne berry extract is very good for the heart. CAYENNE pepper (organic) can stop a heart attack - 1 tsp cayenne in 1 cup hot water. See Dr. Christoper's website: herballegacy.com/Cayenne.html It dilates blood vessels. It can lower BP if it is high or raise it if it is low. Does she have high BP? Does she have high HOMOCYSTEINE levels? Need to find out about this. VERY, VERY IMPORTANT. There is a direct link between high Hcy and Hypothyroid among other diseases - heart disease (stroke and heart attack). Does she drink coffee or tea? I found out in another book: THE HOMOCYSTEINE SOLUTION, Patrick Holford. On pg. 162 it says, Drinking coffee or tea 1st thing in the morning is bad news for the homocysteine - raises it by 10%. Also found out WHY drinking coffee or tea is bad in an interesting book called: "You Can't Take the Rainforest Out of the Bird", by Machelle Pacion. Because...a diet too high in TANNINS (the dark color of coffee/tea) blocks absorption of iron and vitamin B12!!! I hope this information is useful for you. 3 JOHN 1:2 “Beloved, I wish above all things that thou mayest prosper and be in health, even as thy soul prospereth.” AMEN.
Mum has low BP though it was high the night she took too much of statins thinking they were stomach tablets . I do give her both those teas sometimes they work and other times not . Due to fainting from the low b12 she damaged her shoulder and has nerve pain which is severe again so she never sleeps .
She does drink tea and coffee that has no caffeine . I don’t know what homo cysteine is sorry !
Her mood is so low she talks a lot about dying and her time being up it’s very tough to listen to .. I keep wondering if she has hypothyroidism as I suffer from that though all docs test is TS H and she won’t go private.
Thank you so much I really appreciate all your advice
Angie56 - Sorry to hear about your mom's troubles. Please don't give up on her. Are you familiar with essential oils? Can you get some peppermint essential oil to put on her shoulder? It would help with inflammation and pain so she could sleep. Or some TURMERIC essential oil would help also. I'll bet your mom also has low stomach acid and has trouble absorbing nutrients from her food. That is a real bad problem. If you can't absorb nutrients from the food or vitamins, then things will not go well at all. My mom had that also. Here is how I solved that problem: Every morning, I give her 1/2 cup of hot water with 1/16 tsp of Himalayan pink salt (best salt ever - lots of minerals) Vitamins won't work without minerals. Then she drinks 1/2 cup of coconut water (high potassium) to balance out the sodium. Then she eats her breakfast (2 Eggs, turkey bacon and salad greens) and takes her Methyl B12, FOLATE, B6 with ZINC because that is the key to make the B6 work to lower the homocysteine. No coffee and no tea, just water. Stay hydrated - so important. I am sure your mom does have hypothyroid because if she is on statin drug for cholesterol it is directly related. Low thyroid = high cholesterol. Cholesterol is not the evil bad guy you think it is. My mom had that problem, not anymore. Thyroid is now NORMAL since I figured out about the HOMOCYSTEINE which is the REAL KILLER and how to lower it. Statin drugs are very dangerous. Cause heart attacks and strokes. They block fat soluble vitamins A, D, K2 and E. See article from DR. MERCOLA: articles. .com/sites/articles/archive/2015/06/03/statins-inhibit-vitamin-k2.aspx Vitamin K2 is very important for moving calcium out of your soft tissues(arteries and kidneys, etc) and into your bones and teeth. Statins block this vitamin and that is how strokes and heart attacks occur. Please try to understand this.
Thank you so much Africangrey I use oils myself but it never entered my head for mum that is a great option . I have talked my mum into getting a pro biotic . My dad and mum take statins and my dad had heart attack two years ago and now again has to go for angiogram . I spoke to the doc today and she suggested anti depressants for mum a very low dose it might help . Thank you so much I really appreciate it and hope your mum is feeling a lot better
Angie56 - WAKE UP! Why so dumb? Sounds like you are not convinced that statin drugs cause heart attacks and strokes. That is what will happen. You should convince your parents to get off that garbage now before it is too late. Find a naturopathic doctor and nutritionist for your parents. Your dad needs B vitamins and magnesium and selenium and zinc. In case of heart attack, take 1 tsp cayenne pepper with hot water immediately. Take vitamin K2 - takes calcium out of the soft tissues (ie arteries, joints) and puts it back in bones and teeth where it belongs. Avoid vitamin D because it makes you absorb 20 times the calcium and with no vitamin K2 to tell it where to go, guess where it goes - ARTERIES. Look it up! DEAD DOCTORS DON'T LIE (because the live ones are lying to you) - Dr. Joel Wallach says every disease is a mineral and vitamin imbalance and he proved it. Your mom has hypoglycemia and food allergies if she is depressed. Avoid all SUGAR. B12 @ 1000 mcg/day. Needs to lower her HOMOCYSTEINE levels quickly. Vitamin B6 and ZINC. NO ANTIDEPRESSANTS. She needs B12 and all the B complex vitamins Did you get that book I told you about? Guess you are not really interested in helping your parents. On that note, I'm out.
Very aggressive and unkind message however well intentioned. Also dangerous to give such instructions without a proper medical understanding of the individual case.
Angie56 - please do not be disheartened by someone who seems to be bullying you while at the same time inferring s/he is a Christian...…( ? )
Look for kindness, there is plenty of it here. Ignore everything else.
Go back and read again what Foggyme has replied to your post. This is a person that cares about you and about your mother's wellbeing and gives sound advice.
Please also contact Martyn Hooper as soon as possible.
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