Just got back from the latest appointment with my youngest daughter and feel like spitting blood! Her last blood test results showed that her ferritin had dropped from 33 to 18. When I pointed this out she said that my daughter did not have iron deficiency and it "just happens" to drop and it doesn't matter because she isn't anaemic. The fact that she has suffered with anaemia in the past is of no concern. She refused to even consider any more tests and did not listen to a word my daughter said about how exhausted she feels with little concentration and very little energy. She asked about bowel problems which my daughter doesn't have, and she asked me what I thought was the problem. I said I thought there was possibly absorption problems but she said its very unlikely as there would be bowel problems.
She didn't listen to my daughter trying to tell her that she is "trying" to do toning exercises every other day and is completely flattened when she's finished and has to recover over the next 24 hrs by sleeping all the time. She is fixated on my daughter being depressed which is the case, however she is not so depressed that she doesn't want to do anything....she is physically and mentally too knackered to do what she wants. She used to be able to read a book from cover to cover in a day, and has always got enjoyment out of reading. Now she has to read bite sized chunks and go over and over it again ,to try and retain what she has just read and can only do this is very short bursts as its too tiring. The doctor said that her B12 was fine and I said that she had problems and had to have injections but they were stopped so my daughter supplements B12. This was probably one of the worst doctor's appointments I have ever had to endure. I feel that she is not interested in getting to the root of the problem and just wants to send my daughter away with anti-depressants. on saying that though she did give a prescription of ferritin 305mg x 2 daily but said that she was sure it wasn't going to make a difference! I am so depressed myself now I could eat a truck load of chocolate!!!
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Ok,,, here is what I would do if she were my daughter. I would buy ferrous gluconate and gummy vitamin C and have her take one of each at night for the rest of her life! She is not absorbing iron from food, as she is low on acid in the stomach. She has maldigestion. .
She needs to supplement with all fat soluable vitamins A, D, E, and K. Always. I would have her tested for IF antibodies. If positive she will need calcium, magnesium supplements also.
Don't be discouraged. I have had both iron anemia and B-12 anemia and osteoporosis as a result of PA. But I'm OLD. She is young, she can get ahead of this. And get her energy back.
It took me pry 5 years to get "caught up" on all my deficiencies. Now I am well again. I spent 30 years miserable because of Dr's who said I was "fine" and wasn't anemic. I finally found a specialist at the University who understands my disease and test me regularly for deficiencies.
Please forgive me hijacking this post but you sound like you might be able to help me chatycafy and I am getting desperate.
I am having trouble metabolising the B12 that I take in daily injections and I keep getting horrible returns of all my B12d symptoms if I don't take extremely high levels of whatever additional cofactor my body suddenly needs.
I am scared that I don't know what the next limiting factor is going to be and if I can get hold of sufficient supplies of it to correct the problem in time.
I currently need lots of B9, potassium and magnesium for the B12 to work.
Are you still anemic? B12anemia? Iron anemia? Daily injections? For how long.? What other supplements do you take? What symptoms do you have?
PA causes maldigestion. You need to find foods that you can chew to a liquid so you by pass stomach and let small intestine absorbs nutrients. You need fat soluable vitamins as you cannot digest fats. Stick to low fat foods.
I have just written out a full reply that frustratingly has just disappeared!
I must go now but my quick answers are:
I have always tested negative for anaemia. I have had B12d symptoms for most of my 43 years.
I had an acute spell around 20 years ago probably due to an autoimmune illness which affected my liver. I also had a heart op around that time. I was dx CFS.
With a good diet and a general supplement I gradually improved until about 3 years ago.
With increasing symptoms I finally got a dx of B12d.
I had my loading doses in April 2015 and was well for 5 weeks. I then needed jabs with increasing frequency until I was SI 1 mg in 1 ml hydroxocobalamin daily in July. I took a multivitamin and mineral supplement plus methylcobalamin sublinguals.
In December I changed my jabs to 1.5 mg and since then, despite my serum levels testing OK, I have needed to add in high levels of folic acid, potassium and now magnesium.
If I don't I get a return of my symptoms:
I need more than 12 hrs sleep per day
Brainfog
Memory loss
Tongue blisters
Eyesight blurring
Speech Problems
Heart arrhythmia and a "heart failure" type cough
Ataxia and balance issues
Skin stinging, itching and numbness
Plus a plethora of other B12d oddities
I am scared that I don't know what I might need next and if I can get plenty into my body in time because I crash so quickly (it only takes a few hours) when things go wrong.
I don't think you have B-12 anemia if you are taking that much B-12 it should have corrected itself. My doctor would test my B-12 stores, also iron stores (ferritin) and Vitamin D and A levels. Do you have any digestive issues? Electrolyte imbalances can cause these issues too. Too much potassium or too little can alter the heart. What about sodium? I have to make sure I get enough salt everyday. It can lead to some of your symptoms.
Magnesium and calcium are linked together. And potassium and salt. Were you diagnosed with low potassium and that is why you are taking it?
Are you overly thirsty? (could be low sodium)
Do you have low blood pressure? Do you eat enough protein? Does you multi vitamin include all the B vitamins?
DIet is the cure, but first imbalances and deficiencies have to be corrected. And THAT's the hard part. Too much of one can throw off something else.
Your last comment sums it all up! That's what I'm trying to get to the bottom of.
The multivitamin and mineral supplement that I am taking - and have taken since the B12d dx in September 2014 has a full, balanced spectrum and should be fine.
All my blood test results show I have good levels of what I need and no other problems like thyroid or coeliac-disease.
My digestive system appears problem free.
I have taken the other things only because, as my B12 symptoms come back, I have had deficiency symptoms for them too and I know they are B12 metabolism cofactors. When I have added them in all my symptoms have gone. If I get short of them all the symptoms return so I guess I now need them as much as the B12.
My potassium source is 66% potassium chloride and 44% sodium chloride so I am sure I must be getting enough sodium.
I am about to get my vitamin D tested.
I think I've been getting a broad range of proteins but I am now working harder on making sure I do.
Thank you for the heads up on the ferritin, calcium and vitamin A. My blood results show that they should be fine but if the B9, K and Mg are anything to go by that's irrelevant for me.
Do you inject B12 in the form of Hydroxocobalamin? Try using Methylcobalamin, which is a step nearer to absorption . If you want to do this, some back here and get the info on how to get it. Best wishes.
I politely disagree. IF has everything to do with maldigestion. If you cant break down food in stomach small intestine cannot absorb minerals. I have osteoporosis as a result. I take calcium citrate daily.
Intrinsic Factor does one thing and one thing only - it transports vitamin B12 across the gut wall. It has absolutely nothing to do with breaking down food or the absorption of minerals.
You're confusing Intrinsic Factor with Gastric Atrophy. The latter can cause a reduction in the amount of IF. It can also cause a reduction in the amount of stomach acid - which does hinder the breakdown of food.
We certainly aren't. I dunno what page you're on, but I'm on the scientifically accurate page.
IF antibodies do not cause maldigestion. They do destroy IF, but that doesn't cause maldigestion. It does stop the proper absorption of B12.
Autoimmune Gastric Atrophy is the result of an autoimmune response to Gastric Parietal Cells and IF. It is the destruction of Gastric Parietal Cells that causes maldigestion.
GPCs secrete hydrochloric acid and pepsin. The former breaks up many foods, releasing many nutrients. The latter is an enzyme that breaks proteins into smaller chunks. it is the destruction of GPCs that lead to maldigestion.
Along with the autoimmune process that attacks the IF protein and lowers IF levels in stomach secretions, another autoimmune reaction against the stomach lining cells also occurs, resulting in a form of inflammation known as chronic atrophic gastritis.
I have had this disease for 30+ years. Although it takes years for it to completely destroy the lining of the stomach it does occur. That is why it is important to know if one has the IF antibodies so one can keep ahead of the deficiencies. Achlorhydria is ugly!
We are on a different page. No offense taken or meant.
My daughter experienced exactly the same. 1 year after having an infusion of iron, her levels of iron, B12 and folic were all low again. Doctor insisted that her symptoms of tiredness, clumsiness and brain fog were neurological and that she was depressed. We changed GP, and two weeks later she was diagnosed with coeliac disease. The delay in diagnosis had led to considerable physical damage in her intestines and the low level of vitamins was due to malabsorption. Admittedly, in the last few weeks, she had also been suffering with gastric problems......but this was only when the damage was advanced.
If you are unable to change your doctor, go back and request that she has a gluten antibody blood test.
Our health starts in the gut, mental and physical. Most people, of all ages, are walking around with leaky gut and doctors will never tell you that because even they don't know it. One round of antibiotics, birth control pills, GMO foods, meat that isn't organic and grass fed, refined sugar, dairy, GLUTEN. ANYTHING THAT ISNT A WHOLE FOOD AND IS ORGANIC CONTRIBUTES TO LEAKY GUT. Leaky gut, leaky brain. I know this all sounds intimidating, but it cold, hard facts. It's not our fault, it's what our diets have turned into. The thing with gluten these days,that make so people develop a sensitivity to it, is how it is harvested and processed. Food products that contain gluten have 2x the amount of gluten because it is GMO. Our digestive system can't keep up. When we develop leaky gut our undigested food and protein get reabsorbed back into the blood stream and our immune system recognizes these toxins as foreign invaders making the immune system work harder to fight back. Eventually this leads to health issues. Low iron, vitamin and mineral deficiencies, hormonal imbalances, autoimmune diseases, bacterial overgrowth in the gut ( small and large intestines), Candida, h. Pylori, parasites. Our gut needs to be 80% good bacteria and 20% bad bacteria! but for most people the bad outweigh the good. The reason people develop issues like Chrohn's, diverticulitis, IBS, celiacs, is because of leaky gut. Why does this effect our mood, because 90 % of serotonin is produced in the gut and 80% of our immune system. Majority of health issues stem from not having a properly functioning digestive system. Symptoms of a lot of mental health issues can be somewhat controlled and sometimes eliminated if the gut is healed.
Brain fog, difficulty concentrating and staying focused are symptoms of leaky gut. How do we heal leaky gut. We must cut out all dairy, gluten, sugar and grains. Grains are hard to digest, once again, because of how they are processed, making our digestive system work really hard. One will say, what's left to eat!! Well, it's getting back to the basics of eating organic whole foods. Lots of vegetables, fruit in moderation, grass fed meat and fish that isn't farmed and fermented foods, which help to nourish the gut with good bacteria. Bone broth, made from grass fed bones works really well to heal the gut. Again, I know this sounds intimidating, but that's the reality of what our typical diet is doing to our bodies. All the pesticides, antibiotics, growth hormones, glysophate are destroying our bodies. Why do so many people have so many food sensitivities? Leaky gut!!! So in order to get to the root cause of most health issues, we must start with healing the gut!!!!!
I guess it depends on where you are living. I'm referring to Canada and the US. GMO foods and pesticides, antibiotics, and growth hormones are a big factor here in Canada and the US. I didn't mean to offend anyone. Unfortunately these issues are very real where I live and I understand that they are an issue in other parts of the world. sorry for the misunderstanding.
I agree - please go back and insist on a coeliac test. B12 and iron deficiencies are both common with undiagnosed coeliac disease and once on a gluten free diet as the stomach repairs itself both should get better. It is well known that coeliac disease can present without any stomach symptoms. If you can't face going back to the doctor, you can buy a coeliac test from a pharmacy - I ordered one online from Boots and had it sent to my local store as they didn't stock it. (There is a still a possibility that this could be negative even if she has coeliac disease - but it should pick it up in the majority of cases). Make sure your daughter eats plenty of gluten in the days before being tested.
To me it doesn't sound like you are depressed - just understandably frustrated by the stupidity of the situation.
Just wondered if you might have lower levels of B12 too? It often has a genetic link.
Your post suggests to me that she needs B12 injections. Would you consider sourcing your own injections? Everyone needs the right level of B12 and supporting cofactors getting into the cells of the body and If the problem goes without effective treatment then, as you know, permanent damage will occur. If you'd like some ideas, look at my profile and see my "My Experiences" post.
Injections for life are fine - see clivealive's replies to past posts - and every T1 diabetic and are much better than the symptoms.
I'm intrigued by what you say about her reading - I was mocked mercilessly by many teachers at school and my work used to take ages because that's how I have to read. It's fascinating as I suspect that I have had some degree of B12d most (all?) of my life. Thank you!
It sounds like pernicious anemia to me. Has anything gone numb like her feet or her tongue? I would get a 2nd opinion. I realise how difficult it must be for you and your daughter as I had to wait 2 years to see a neurologist and as a result have irriversible nerve damage in both feet and me left leg which means I am continually exhausted and need a walking stick to get anywhere. I am only 54 so I am not happy. I get injections every 3 months now. Hope this helps. I'd get a second opinion if I were you. Take care
So sorry! I suffered for many years also, I became terribly anemic and could barely move without fainting!! They were stunned by my blood test!!! (Dr's didn't listen to me... go figure!) I now inject B-12 once a month. My question is why in Scotland do you only receive it once every three months? Is that possibly why you are still struggling? I could barely walk at my worst, but now I'm fine and can do most things I want too. I'm 60 and in USA.
Different countries have different treatments. Please read Martyn Hoopers latest book. YOu can buy it on amazon. I would love an injection every month but they won't entertain me. They keep testing my blood and telling me the level is too high. I was off the scale and I missed an injection for a whole year. It took weeks to et it sorted again. Some people don't even get a blood test before their injection. I really don't understand why their are so many ways of treating this debilitating condition which can lead to stomach cancer. Perhaps I should change my doctor or seek a second opinion. Thanks for your reply. I am glad you feel much better now with the right treatment for you. Perhaps we are all different. I seldom fo outside these days. Not worked since my diagnosis. Take are my love. Please keep in touch. It's good to talk.
My Dr.did tell me I had to figure out a diet that works for me as we are all different and respond differently. I hope you get better too. I will look up the book. Thanks!
Maybe you should think about self injection. Once you overcome the idea of sticking sharp objects into your skin, the exercise is a piece of cake. I had a nurse friend walk me through it and I tell you, it is empowering. It is always wise to work with your GP if possible - ask for the B12, antibodies to IF and GPC and go from there. Good luck.
BTW, my 34 yo daughter has just begun treatment - iron infusions and B12 injections so I urge you to consider the genetic implications for yourself. It has changed both our lives.
As a "non medical" person I'd like to give all doctors a six months "free trial" of P.A. or b12d to see how they like it when the symptoms present themselves only to be told they are "depressed".
You don't say if your daughter is vegan or vegetarian and assuming she hasn't had gastric surgery, isn't on Metformin for diabetes, or taking antacids, perhaps her problem is dietary.
Is she "picky" with her food as B12 can only be sourced naturally from meat, fish & poultry including eggs. (Caviar has exceptionally high levels - Mmm No-one told me that in the 1970s)
She will also need plenty of folate from vegetables and fruits e.g. Asparagus. Broccoli. Citrus Fruits. Beans, Peas and Lentils. Avocado. Brussels Sprout, Spinach etc. but being a Mum you probably know that already.
When I was first diagnosed with P.A. 45 years ago I was threatened with having to eat raw liver three times a day. Now, as much as I love liver - (cooked with bacon, onions and gravy) I opted for monthly injections instead.
Hopefully your daughter does not have P.A. and her problems can be resolved by diet and I wish you both well for the future.
Your daughter is very low in iron. When my ferritin level got down to 30, I couldn't stand without leaning against a wall. I started on Solgar Gentle Iron, 2 capsules a day and within 2 weeks felt immensely stronger and better. You can get these online at Amazon, I think. I had other symptoms-hair loss, ridged fingernails, shortness of breath. I also was B12d and started on Methyl every 2 weeks but with some experimenting, found that once a week is optimal.
Between getting my iron levels up and taking the B12 I needed, I felt like a new person. When ferritin levels got to 34, I felt much better.
I can't believe your daughters GP wasn't concerned about her iron levels! I agree with chatycafe about getting get some iron and vitamin C for her. And B12.
Can you see another doctor? If not, perhaps you should consider purchasing B12 online and giving your daughter injections. Lots of people that post here do that. I am very lucky in that my doctor here in U.S. understands and gives me a prescription for B12 which I inject myself.
My heart goes out to everybody on this site who have such frustration with doctors not understanding about B12. I get so angry at the stupidity of GPs who won't take the time to learn more about it. So many people have to suffer needlessly. Best of luck to you and your daughter!
Pease have your daughter checked for coeliac disease as there is always a reason why minerals are low, especially iron. Also ask for a stool culture for blood and parasites. I'm not implying that you are unclean, just that parasites can be easily spread among children. I'd also ask for an mthfr test, and if this comes back positive she will need to avoid synthetic b vitamins, particularly b12 and folate.. Folic acid is synthetic. i believe these synthetic vitamins should be avoided anyway as they don't seem to do anyone any good. The iron type is important also. Iron bisglycinate is best absorbed and doesn't seem to cause the stomach discomfort that others do, even at high doses. Low iron, b12
I hope this helps and you manage to find a go that listens to your concerns. Might I also add that iron deficiency and low b12 go hand in hand with depression and anxiety. Again, not saying your daughter has either of those but it would be understandable if she did.
Thank you all for your comments I have calmed down a bit now! I think my blood pressure was sky high when I left that surgery and was so upset at the situation. I am 100% sure the cause is not dietary as she eats extremely healthily. She loves meat especially steak that is very rare i.e. threatened with a frying pan! She eats lots of fruit and veg and she doesn't drink tea, coffee, fizzy drinks, nor any dairy as she is intolerant. The only medication is the contraceptive pill which can cause absorption problems but because of very heavy periods she has to take it. She doesn't have bulimia, nor does she take laxatives or illegal drugs, which she has been asked about. She takes supplements everyday without fail yet despite all this she is not being treated properly. I cannot and will not let her struggle like she is as all she is doing is existing. I know all of you here understand how dreadful she is feeling and I very much agree with the statement of "walking a mile in someone else's shoes" before you judge them. Just wish that we could find a doctor whom has pa/iron deficiency to treat her. I have also realised that her thyroid hasn't been checked for over 2 years. I have hashimoto's which is another autoimmune condition so looks like I will have to get this tested privately for her. I am also looking at the test for mthfr gene but £125 is a lot. As she is already supplementing B12 I understand that this would skew the test results for holotranscolbamin but I really don't want to stop the B12 supplements. She has gone from around the 200 to 866 although we have no idea how much is being used. She had two lots of loading doses then it was stopped with no more injections and I assume that was because they didn't listen to us and assumed it was a dietary problem. It makes me think that they are assuming we are lying about her problems which is not the case!
Gluten can block the absorption of nutrients across the gut. The B12 molecule is the largest one we have to extract from our food, so it's not a surprise that this is generally the first thing people become difficient in.
PA is autoimmune. Her body attacks itself. She cannot digest food properly. She will get worse if you dont address all the vit and mineral deficiencies. PA effects stomach. Celiac affects small intestine. Eventually she will no longer rebuild parietal cells which in turn produces stomach acid. It is what it is. But thankfully its a slow moving disease.
Thank you all for your comments. She had a blood test to look for coeliac which came back negative. I was under the impression though that the only way to test this properly is by internal investigations....not sure if I am correct! She is using B12 nasal spray to avoid the possible absorption problem and is taking 10,000 jarrows B12 to try and load her system and hope that some gets through. I will have trouble getting her to go to another doctor at the moment as this appointment caused her to have anxiety which she really doesn't need so will have to take a break from doctors for a while until she feels ready to face possible disdain again.
Glad she's had the test for coeliac. If she was eating gluten before the test then from what I understand it is unlikely to give a false negative unless she has an IgA deficiency - some labs test for that at the same time but some don't. It will probably tell you on the print out whether they tested that as well.
I'm all too familiar with the raised stress levels when seeing a doctor. I hope that the supplements work and your daughter starts feeling better.
I think that`s disgusting . I hate doctors too ! Get some methylcobalamin active b12 ( Holland and Barrett sell Better You B12 Boost spray ) Spray it under your daughters tongue four times a day and stop going to doctors . They are con men and snake oil selling frauds who have been using nitrous oxide gas to switch off vitamin b12 synthesis then giving themselves thousands of pounds of NHS funds each week in pay plus of course all the extras they get from the pharma drug companies for doling out all those vitamin b12 lowering pharma drugs in order to keep themselves in victims who keep coming back for more . Bashir Assad and his wifey are both doctors and seem to have flushed more victims into Europe for the fraud . Haven`t you noticed that whenever there is a terrorist attack , nice shiny ambulances always seem to turn up . Mr Putin is right ! He said that the medical people were causing the problems and then seeming to fix things . Lots of people hate most of them for being the biggest drain on our countries funds and for taking most out and giving the least and while we are all supposed to pay them respect for being a " doctor " . If we don`t , the Nazi`s simply call people menatlly ill . The NHS has caused more illness than it has cured and has got too big for it`s own boots . People want vitamins , not b12 lowering pharma rubbish . They want good A+E provision , care for the elderly not threats of harm if we don`t let them carry on ripping us off and using our babies and children to practice surgical skills on . Women want proper health care , not being kept vitamin b12 deficient so they have pre term babies who are born with a low birth weight and go on to have an unnaturally early puberty , then have their babies and children snatched from them and taken into care to be raped , groomed and thrown onto the streets to become victims of the sex and drugs industries . We have had enough and so have the decent NHS staff who canot take it any more . Vive la Revolution in healthcare !
Just had to chime in about your mention of the doctor being fixated on the notion that it's depression. I can concur from experience that this is how they all think. Once their typical solutions fail and no other test results jump out at them, Doctors always turn to mental problems and of those frequently depression. I have to keep telling them that I'm not sick because I'm depressed, but that I might be depressed because I'm sick.
The take-away is to find a doctor that listens to what you want to try. And then you do the research and the science and be the doctor. Only you can put the time and best interest into finding a solution for you (or your loved one).
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