Iron infusions and anaemia.

[Goditha1970]

I have hypothyroidism, parietal cell auto antibodies and microcytic blood cells. Some experts are saying that means I have pernicious anaemia and others are saying as my B12 level is fine it's just chronic anaemia. What is the truth? I have finally after 10 years had an iron infusion after going through gynaecology and gastroenterology. Haematology wouldn't see me as I must be bleeding somewhere!! My levels are currently 7.8, how many iron infusions should I be having and how frequent?

[wedgewood]

I'm afraid that I can only comment on the parietal cell antibodies, which are often an indicator of Pernicious Anaemia. Have you been tested for the antibodies to the intrinsic factor? They often are present in P.A. Do you know what your level of B12 is? Doctors often say that it is fine ,when it isn't. ! I regard anything below 500 for the serum B12 test , as low., especially if you have B12 deficiency symptoms There are a lot---look them up on Google or this site. I'm sure that someone will come along soon be and help you with the iron infuse in question. Best wishes.

[Goditha1970 in reply to wedgewood]

I was tested for intrinsic acid and that was normal with B12 at 799. I can't take oral supplements which just make me sick.

I just wonder how many iron infusions I will need?

[SAMBS in reply to Goditha1970]

Interesting you say about supplements making you sick. That is possibly the stomach and diaphragm reflux auto reaction. My doctor prescribes me what he can in a liquid form. My body rejects what it doesn't like. Me also, I took myself off virtually all meds except Levothyroxine Autumn 2014 because they messed with my brain, and weren't helping other things I was being prescribed for. I can eat gluten, except whole wheat, as found more in Weetabix. Wheat used for bread/cake/biscuits is milled to a fine flour. I can eat those with no reflux problems or IBS. I can also take dairy, in fact the hospital dietician here, back in 2014 recommended small amounts of cheese, butter, cream at some point in my meals. Carbs and proteins are essential parts of our diets also in moderation, as well as the Vitamins.

My own research, plus trial and error, has drastically changed what I eat and when.

I've got out of the rut of normal English habits and patterns, also by observing what and when the French eat. My weight and metabolism are under control for first time in my whole life. Even if my blood and macrocytic red cells arent quite yet, as per my previous reply.

[fbirder]

Your microcytic cells are probably due to iron deficiency anaemia.

The anti-GPC (gastric parietal cell) antibodies are an indication of pernicious anaemia. Like wedgewood says, you need to say just what your B12 levels are. As well as the 'normal' range being stupidly low it's quite likely that you have anti-Intrinsic Factor antibodies and it's well known that these can affect the B12 blood test to give falsely high results.

The anti-GPC antibodies will be attacking the cells in your stomach that produce IF - which would produce PA. However, those cells also produce hydrochloric acid. Killing those cells means low stomach acid - which can greatly affect the absorption of iron. Which would help explain your iron deficiency.

Instead of infusions you may just need oral supplements as long as you take them with citric acid (found in citrus fruit juices) and ascorbic acid (Vitamin C) both of those chemical help the iron get into solution so that it can be absorbed.

[indywindy in reply to fbirder]

And also take your iron 1 hour ahead of a meal (with citrus as stated earlier), as a lot of food (e.g. dairy) interfere with the absorbtion of iron. I have come to the conclusion that I absorb fluid iron (Krauterblut) much better, as my ferritin actually goes up on this, rather than on different forms of pill supplements that have failed to raise or keep it stabil. I have tried iron infusions three times, but I didn´t manage to keep up the level of ferritin on the pill supplement, so quickly lost a good level thereafter. So I advise you to seek experiment also with liquid iron. For a period make sure you have frequent blood Measurements following your ferritin which should be above 60 to keep the worst symptoms at bay. Good luck!

[Danslatete in reply to indywindy]

Wow I think it's going to take me a while to get ferritin to 60, it's taken me since October to get my hb up and my ferritin has finally started to raise. It was 5 in feb and last week it was 15. I take ferrous sulphate 3 times so day with a vit c tablet. I also take an a-z supplement each day. I'm gluten and dairy free since November so am very careful about calcium and my diet. I feel a million times better but by 2:30 pm I'm totally done in. Mind is mush and body is dragging. I just need my oomph back.

[kmalbasich in reply to Danslatete]

I tried ferritin was in my system but not getting stored.

I even tried floradix liquid but same issue.

I found Maltofer much better and easier on the stomach.

I eat healthy now and listen to my body.I always knew I couldn't absorb meat.

I found Vitamin d3 high level

magnesium malate for energy, folate all helped improve my energy.

My life style has changed I only have one coffee a day other wise in interferes with absorption of my vitamins and nutrients.

Feel like shit if i have two lol!

I do yoga and qi qong and kung fu as all combined for my health and well being

Try keep alkaline

[Foggyme Administrator in reply to fbirder]

Good tip Fbirder. Having trouble with ferritin levels so will give this a whirl.

[Gambit62 Administrator]

Do you mean microcytic or macrocytic - microcytic (small) is usually down to not having enough iron - macrocytic (large and deformed) is a classic symptom of an underlying B12 deficiency (and caused by lack of B12 being available in the bone-marrow where blood cells are made).

Anaemia is just a catch all for a blood disorder of some sort - which could affect red blood cells.

In order to say that your B12 levels were fine or not it would be necessary to actually know what the results were and what the reference range was - as normal range covers a large grey area where people have strong clinical symptoms but still seem to have plenty of B12 in their blood.

Pernicious Anaemia is actually a misnomer for a specific cause of B12 deficiency - a B12 deficiency can cause anaemia but it isn't necessarily anaemia that causes the symptoms - and it is definitely not involved in all of the symptoms (eg neuropathy).

Sorry but really can't answer on how many transfusions you will need - though having had transfusions is going to make it difficult to see what is really going on with B12 unless you can manage to get back to your original results.

[Laura5]

10 years! That makes me sad. Have you been taking iron supplements all that time? And have you had anaemia for the whole time? Is the 7.8 your haemoglobin level? Can't believe you have had to wait so long for an infusion. No idea how many you will need but I hope they are effective and make you feel better.

[Goditha1970 in reply to Laura5]

I took iron supplements for the first couple of years then I started being sick. So yes anaemic for 10 years. I had gastroscopy, and endoscopy twice and then a womb ablation jumping through haematology hoops. Nothing gave any answers and in fact the ablation made my hb drop lower. In October they tested my intrinsic acid factor which came back normal with a B12 of 799 but it showed I have parietal cell auto antibodies. They then gave me iron supplements with omeprazole, wow did that make me ill. The gp should have known that this would reduce my stomach acid even more than having parietal cell auto antibodies and cause horrendous pain! I was then referred back to haematology and gastroenterology. Haematology declined to see me saying it's a gastro problem, even though I have microcytic anaemia (small blood cells) making absorption harder. Gastroenterology saw me suggested I imported an unlicensed product from Italy for a month and then if that didn't help should speak to haematology for an iron infusion. I shouted and screamed at this point and finally last week had an iron infusion and was told to have a blood test in two weeks. They really don't get it. I feel no better and I'm sure it's going to take more than one. I'm also sure it's going to need doing throughout my life. Why is it so difficult... Bottom line, it's all about money!

[Danslatete]

I'm also waiting for iron infusions and funnily enough the haematologist declined to see me. I am going to general medicine in June. I've only been struggling with this for 8 years. Hopefully you can tell me how magical this infusion is

[Goditha1970 in reply to Danslatete]

After one I feel slightly less out of breath but it's going to need more.

[kmalbasich in reply to Danslatete]

My Dr wouldn't give me Iron infusion said was dangerous just eat more meat.lol

I cant absorb and break down meat sits in my guts for ages makes me sluggish.

So found new product on market Maltofer easier on stomach better absorbed no constipation issues!

[Jessiepup]

Microcytic aneamia is also due to Copper deficiency which can present with some symptoms associated with B12 def

[Hidden]

I thought I had B12 deficiency with lots of,symptoms. GP said I was within the normal range. Eventually a hospital doctor did a blood test as I felt dreadful and called me in the next day for an immediate blood transfusion. I was told I had microcytic anaemia and my Hb count was 6, and therefore not B12. Sent for endoscopy and colonoscopy, no particular reason found for loss of blood. I had to have a second blood transfusion as my Hb count went down to 6.8 but since then have been taking ferrous sulfate 3 times a day and am up within the normal range. Always take with orange juice, avoid tea and coffee and dairy products within an hour before or after. Have been taken off anti inflammatories for osteoarthritis, and Pantaprasole PPI which can interfere with iron absorption. An A&E doctor suggested an iron infusion, but I seem to be ok without.

Still not really sure why I was iron deficient, but now still have a number of symptoms, which I am sure are B12, level is 118 but GP says it is still within normal range!!!!!. I have neuropathy, the sighs and palpitations. They have condescended to give me weekly injections for 5 weeks, and I am taking daily 5000 sublingual tablets.

I am struggling to work out whether there is any connection between the iron deficient anaemia and the B12 deficiency. They were very clear that I was microcytic, and therefore did not have PA or B12 deficiency which would show as macrocytic. I wish there was someone I could see who could really explain what different blood results which appear to conflict actually mean, as I don't think most GPs really understand.

[fbirder in reply to Hidden]

118 is not, by any definition, normal. It is low, very low. It needs treatment ASAP.

Macrocytic anaemia is not a necessary indicator of a B12 deficiency. Download my summary document for some important facts, and the expert sources to back them up... frankhollis.com/temp/Summar...

Yes, there could be a connection between your iron deficiency anaemia and the B12 deficiency.

The main reason for a B12 deficiency in people with a balanced diet (i.e., non-vegans) is autoimmune metaplastic gastric atrophy (AMGA). This means that your immune system is attacking Gastric Parietal Cells (GPCs) in your stomach.

These cells are responsible for producing Intrinsic Factor (IF) - a protein that is needed for B12 to cross the wall of the small intestine. Lack of IF means you have Pernicious Anaemia.

GPCs also produce hydrochloric acid - required for proper digestion (especially of proteins), releasing B12 from food and making iron more soluble. A lack of hydrochloric acid (achlorhydria) can hinder iron absorption. Taking PPIs (which block acid production) only makes this worse.

Show the doctor my summary document. Especially the bits that say treatment should be done depending on the symptoms, not blood levels. Blood levels in people with PA can give false high readings anyway.

With your neurological symptoms you should be having three injections per week, every week, until your symptoms stop improving. After that it should be every 8 weeks. This is the dosing regimen given in the British National Formulary. Your doctor will have a copy. Make sure they read the second paragraph (the first paragraph is for people without neurological symptoms - and many docs give up at the end of that paragraph).

There is no point at all in measuring B12 levels once supplementation has started.

[Hidden]

I am not sure I understand paras 4, 5 and 6, in terms of how it connects iron deficiency with p a. What tests would I need to identify that p a is the cause of my B12 deficiency, or could it just be taking the PPI, though I haven't taken it for very long. I have a normal diet, pretty healthy, so not sure what else it could be.

I have tried saying that everything I have read says under 200 is low, and have persuaded the GP that I am worried about permanent damage because of the neuropathy, which is why he agreed to this series of injections. I have printed off a number of documents to show him, but unfortunately I am due to go away for over a week shortly and not sure how I can argue for more injections if I'm going to be away. How do people manage with injections away from home.

I wish I had known about the'sighs' before. I have had this for a while, but found it difficult to explain exactly how it felt, so was referred to a respiratory specialist as they thought it was connected to a lung injury I had 3 yrs ago. They did find that I had a paralysed diaphragm, but that is manageable unless there is another problem on top. As soon as I heard a description of the'sighs' it all fell into place.

Thanks for your response. I know I don't have as many problems as some others but it is so depressing trying to argue with professionals who think you are reading rubbish on the internet. I have always got on well with my GPs before, and I don't want to break that relationship.

[Marz]

Goditha - sorry to read of your issues. Lots of good advice - I just want to ask how you are treating your thyroid ? Is it optimal ? PA and Hashimotos often go hand in hand as both are auto-immune - as I am sure you know.

So do you know your levels of TSH - FT4 and FT3 ? Every cell in the body - trillions and trillions of them have a receptor for T3 - so if the level is low then there is not enough to go around. From being on the Thyroid UK Forum for a few years I have read that most thyroid sufferers also have low Iron - Ferritin - Folate - VitD and B12.

If your thyroid levels are not optimal then the processing the vitamins and minerals will be difficult too .....

I am not a medic - but a Hashimotos Gal with a B12 issue

[Goditha1970 in reply to Marz]

My thyroid is currently out of wack since they took away my T3. I have just had a thyroid scan which is normal and am being referred to endocrinologist again lol. The gp has decided to treat the two issues separately. I have had hashimoto for 19 years so know what my optimal levels are I just can't maintain them at the moment!

[Marz in reply to Goditha1970]

Have you considered buying T3 on-line ? - i am T3 only and am able to buy it OTC without a prescription here where I live in Crete.

There is an on-line website selling the same T3 by Uni-Pharma 30 x 25 mcg which is often mentioned on the Thyroid UK forum. People send the information via PM - so maybe that could be helpful. As are the 40,000 people on the forum

The reason they have withdrawn your T3 is due to the NHS being held to ransom by Mercury Pharma who charge 299 GBP's for the T3 that I may less than a euro for here. So they are saying it is too expensive. I read this on a regular/daily basis on Thyroid UK forum .....it is a crime.

[Goditha1970 in reply to Marz]

I have thought about. However the gp has said they will not manage my thyroid or do any blood tests unless an endocrinologist prescribed it. They won't even do T3 blood tests anymore in my primary health care trust. It's disgusting.

[Marz in reply to Goditha1970]

Why don't you join the Thyroid UK Forum here on HU and ask questions about your situation ....

Yes it is disgusting - but there is a way around it. You can manage it all yourself with the help of the amazing people on Thyroid UK - HU. I joined 4 years ago and have learned so much. I will help you - if you click onto my name - read my Profile - the Posts I have posted - the replies i have also posted. That way you will learn to trust people ....

[expatkerry]

I have been diagnosed as having PA. As I have atrophic gastritis (antral) oral doses of iron are out of the question, I simply can't tolerate them. So as well as my monthly B12 injection I have 3 monthly iron transfusions. I feel Great afterwards, but in the couple of weeks approaching the transfusion I'm tired, insomniac with legs made of Wood!

[SAMBS]

Hi Goditha, Have you had ferritin checked in your blood tests? Those levels will tell you if you are iron deficient or not.

I have Hashimotos, and am autoimmune TB. I also have Vitiligo. T overall name for my conditions is Thrombocytopenia. It may be what you have. These are some of the things that contribute to Anaemia. I got as far as anaemia in my health history searches

One of the worst things I have had throughout my life of 68 years to date, is bone deformity, mostly in my feet, hence 3 ops on one foot over several decades. I refused to have toes straightened on L foot when I had last r foot op aged 55. Do you have any sort of bone deformity. It usually starts in childhood, affecting feet and or hands.

What are your platelet counts? Are you on Levothyroxine to replace the thyroxine your body needs?

Autoimmune disease - AIDS, is a pernicious disease in itself. Fortunately there is now good research going on, especially here in France where I now live, via an organisation called CEREMAI. It's the French Research Centre for Autoinflammatory Disease.

I spoke to their lead Researchers secretary yesterday, who in turn was talking to her boss, about my various diagnosed conditions. They have told me the nearest Hospital to me with a specialist Haematologist who's dept is affiliated to CEREMAI.

It could be that in the UK there will be a similar - not the same - research programme going on where you could also be told about your nearest specialist Haemotologist.

There is so much to understand about whole body health. I think much of your answer may lie in your blood test results. I have upward of about 10-15 things tested at same time, because of having more than one health problem. Im pleased to say I don't feel ill.

I hope some of the above helps you and others here. Sambs.