Advice regarding high iron levels after taking ferrous sulphate.

[Jenny-veggie]

Hi I was wandering if anybody could offer me any advice please?

I have not been at all well lately. So sorry if this post is too long.

My blood tests are as follows,

20th November 2015

Serum ferritin 6 ng/mL (range - 10-300)

2nd February 2016

Serum ferritin 27 ng/mL (range - 10-300)

30th March 2016

43 (range - 10-25) I'm not sure what test this was as it’s got a different range - is it serum iron?? I had this test done at the hospital by a consultant.

My GP prescribed me ferrous Sulphate which I started taking after the November blood test together with Vitamin D 10 000ius as my vitamin D level was only 19.

I had not been feeling at all well since December 2015 but I thought that it was due to the repeated viruses that I was having. I came home from work after my third virus in January and had to have 5 weeks off work and a very part time phased return that is still ongoing and that I am really struggling with. All I wanted to do is lie down, I was weak, aching, weighted, depressed. I was having heaving and dihorrea every morning, no appetite, lost 10 pounds in weight and it would take me two hours to get out of the bed. I couldn’t stand for longer than ten minutes. My friends were saying that I was lifeless.

When I started with strange surges / vibrations, bone pain in my ribs, arms, back, neck, I decided to stop taking the ferrous sulphate tablets and the vitamin D3 on 12th March as I felt so awful. I have started feeling better the last week and I have got my appetite back and I am still having dihorrea every morning but it’s not as severe. I no longer pass normal bowel movements.

I have seen my GP 8 times since January saying I don't feel well and telling him about my symptoms but he kept telling me that It was post viral fatigue and health anxiety . I even saw another GP at the surgery who said the same. They said I would start to feel better once my ferritin levels increased. They told me to keep on taking the ferrous sulphate and vitamin D3 despite me asking is it was them that were making me feel so ill.

I then thought it must be my thyroid was making me feel ill so paid to see an endocrine specialist who was no help. My T3 T4 and TSH were in range, I understand that now. He just said he didn't know what was wrong with me and said that my symptoms would improve when my ferritin and vitamin D levels increased so he increased my vitamin D3 to 20 000ius twice a week.

I had a follow up last Wednesday on the NHS with a lovely endocrine consultant who actually listened to me. She phoned me up at 8pm the following night to tell me not to take anymore iron tablets as my iron level was far too high. I said I haven't taken it for nearly 3 weeks which amazed her and she was concerned as to how high it was and she said she didn't know how I managed to function when I was on them as my levels would have been even higher then.

She is writing to my doctor about this and said that the iron would come down with each period I have. She says I will need to see a gastroenterologist if the dihorrea doesn't subside.

I told her that I am starting to improve since I came off both the vitamin D and iron and looking back it was as if I was poisoned and she said I have been poisoned and it is iron poisoning. She seemed to think that I was still taking iron on my own accord and I explained that the doctor prescribed them from November and he gave me another 3 months supply last month that I haven’t taken thank goodness. When I told my GP that I wasn't going to take them anymore he wasn't happy and said could I at least get a more gentler form of iron from the chemist, however I got some but haven't been taking it thank goodness.

I am really upset about it all and I am wondering why this has happened?

How can my iron levels get so high if they were so low? Also I do not know what to say to my GP. Is there something wrong with me or has my GP not done something? I am so thankful to the NHS Consultant who has found out whats happened.

Can anybody give me any advice please?

Many thanks

Jenny

[pvanderaa]

Has your B12 level been tested?  

Too low stomach acid can result in intestinal like issues.  My stomach doesn't produce enough acid or intrinsic factor and I get diarrhea, or at  least loose stools, for a number of reasons.  Orange juice helps with some of them.

Any new gluten or dairy (casein protein) intolerance issues?

Start a logbook and record all symptoms along with time of food, drink and meds.  There is a 3 to 48 hour delay from eating to a reaction.

I had to start eating one thing, like a casserole of known items, for a week at a time to  eliminate items I had issues with.

Get off a suspected item for at least two weeks to completely eliminate residue from the liver and gut.  Then reintroduce and monitor for 48 hours to confirm the symptom(s).

For me the vagus nerve that controls the gut is the one I suspect nerve damage that led to a downward spiral of B12 deficiency.

[Jenny-veggie in reply to pvanderaa]

Hi thank you for your reply. Yes my b12 was tested in November 2015 and came in at 362 (range 200-900). I have been taking b12 1000mg since and I get the results of that next week. I know it is higher as the consultant mentioned it on the phone, I will have a print off next week. The thing is I have only had this dihorrea since I've been in the iron, I think my body is trying to get the iron out of me. I'm vegetarian and I don't eat hardly any dairy at all and I have been tested twice and I am not celiac.  I have started taking acidophilus the last week as I definitely have gut issues from taking the iron,

many thanks

Jenny

[pvanderaa in reply to Jenny-veggie]

I get a soft poo right after taking my B12 injection.  This is one of my symptoms that I know is "good" as the B12 is working. I figure the soft stool is due to metabolic byproducts like excess water that result from the cell getting B12.  The stool usually occurs 12 hours after the jab so one could think it was caused by something I just ate.

Iron usually causes constipation.  Hence I'm thinking the iron and B12 and possibly other vitamins are causing your metabolism to go into overdrive.  The diarrhea may be a symptom that your body is detoxifying from the metabolic byproducts (like excess water).

The logbook will help sort this out as the symptom will typically occur the same time after the cause.  I can't tell you how long because your gut is different from mine.

[Jenny-veggie in reply to pvanderaa]

Hi, I hadn't thought about the B12 causing Dihorrea, I will monitor what I am eating and the b12. However what I don't understand is how my iron could have spiked so high? many thanks, Jenny

[pvanderaa in reply to Jenny-veggie]

Your cells may not be using the iron due to some other issue.  

For good red blood cell production you need a balance of B12, folic acid (up to 5mg) and all the othe B vitamins along with other metals and minerals from a daily multivitamin.

Once you start on B12, the rest of these in your body get consumed fairly quickly so you need to supplement.

Unfortunately you can't control which cells (I.e. Red blood cells) get the B12.  They all use it and all kick into high gear in metabolism once they get B12, if you have been deficient.

Are you being referred to a hematologist?

[Jenny-veggie in reply to pvanderaa]

Hi, No I'm not being referred to a haematologist, I've being referred to a gastroenterologist as the iron has caused me gastro problems and I am being referred to a rheumatologist as I have aches and pains again caused from taking the ferrous sulphate. I'm wandering if I should be referred to a haematologist though as something isn't right. Either my GP has made some big errors or there is something wrong with me. I will find out more later this week as the thyroid consultant who found my sky high iron serum is writing to my GP and then he will call me in.

[Jenny-veggie in reply to pvanderaa]

Hi thank you for replying, I am wandering if there is a link with the b12 and the diohrea, I'm hoping it will go with time, thanks, jenny

[Allyson1 in reply to Jenny-veggie]

I experienced worsened diarrhea with oral and sublingual b12, but not with shots. I had  intestinal bacterial overgrowth to begin with.

[Hidden in reply to Jenny-veggie]

Hi jenny,

Your b12 seems very low. No more than 20% of this is the active b12 that your body needs. Being vegetarian puts you at risk of b12 deficiency. 

Take no notice of doctors saying you are in range as it doesn't really tell you anything. Especially with thyroid tests. Look at the thyroid uk website and its forum. There is loads of information about it. 

Good luck!

[Jenny-veggie in reply to Hidden]

Hi StillSearching, I will find out what my B12 is since I have been supplementing. the 362 level was in November before I started supplementing. I will get a printout of my blood tests from last week. All I know is that is now higher, many thanks, Jenny

[Hidden in reply to Jenny-veggie]

I know that if you have a problem absorbing b12 properly then oral supplements are a poor substitute and injections are the best. You need them for life too did you know? It

[Jenny-veggie in reply to Hidden]

Unfortunately my GP wont give me b12 injections as he says I have good levels even though they are not optimal.

[Hidden in reply to Jenny-veggie]

I'm in the same position and trying to get injections. Look at the information on bcshguidelines.com

There is information that tells you why your b12 test is unreliable and how to treat it. Look on b12deficiency.info

Or b12.org to help you. B12 deficiency is serious so have a look on them as well as on this site-)

[Jenny-veggie in reply to Hidden]

ok great, I will have a look at all your links, many thanks, jenny

[pvanderaa in reply to Jenny-veggie]

Once you are on B12 injection you should be >1500 pg/ml.  Anything below 400 and you could be in the 10% of the population that gets neurological symptoms. B12 Supplements may not get your levels high enough.

[Hidden in reply to Jenny-veggie]

I yhink you are supposed to take vitamin c with iron supplements so that it aids absorpion. Don't know if that helps!

[Jenny-veggie in reply to Hidden]

I did take vitamin c, I have iron overload now. last week when I had my iron tested it had gone up to 43 Range (10-25) so it is too high now. Does anybody know why it can go from being so low to so high, I know that I have been taking ferrous sulphate.

[Hidden in reply to Jenny-veggie]

Have you tried looking through all the posts on the forum by putting your query subject in the search box in the right hand corner?

[Jenny-veggie in reply to Hidden]

I will have a good search, thank you

[Allyson1 in reply to Jenny-veggie]

Is the issue that you suspect your doctors have overloaded you with iron through improper dosing/inadequate monitoring? That is very troubling.

I know that my doctor sends people with high iron to give blood to decrease the iron. I haven't experienced this myself, but he told me about it.

[Jenny-veggie in reply to Allyson1]

Hi, I'm not sure yet, I think my GP has overloaded me with iron. I think they made the assumption that I needed more iron based only on a ferritin blood test and they didn't test serum iron. I think. I should find out more this week. The consultant has said that it will take 12 weeks for the iron to come out of my system. She doesn't want me to give blood.

[Miaaa17 in reply to Jenny-veggie]

did you feel sick at the thought of food too? I think I have this too but the doctor just gave me ferrous sulphate, should I be taking it?

[Jenny-veggie in reply to Miaaa17]

Hi Miaaa17, do you feel extremely ill? I could hardly stand up and could barely eat one meal a day, I was lifeless and was also riddled with bone pain.

It was more than feeling bit sick which I think is a common side effect of taking iron tablets. But if you feel like I did then I would go back to your doctor to ask for your serum iron levels to be checked.

I couldn't do anything, work make my own meals etc yet I'm now back to work etc but it has taken weeks and I am now iron deficient, but I'm never taking another iron tablet again so I am trying to eat my way up.

Hope you feel better soon, Jenny

[Miaaa17 in reply to Jenny-veggie]

It's all joint pain, always feel fragile and I manage to eat but the full feeling and not being able to eat returns about every 4-5 weeks? When I get like that I stay in bed and force myself to eat small portions.

[Jenny-veggie in reply to Miaaa17]

Hi sorry for the slow reply. I think you should speak to your doctor if the joint pain has started since you have taken the iron tablets. I hope you feel better soon. Let me know how you get on,

[pugdogs10]

Hi perhaps you should be asking for a coeliac test and the answers to your questions when you see your GP. PA is very closely associated with coeliac disease and I suspect tis is why the private doctor you saw is hinting at a gastroenterologist. Good luck and I hope you feel better soon.

[Jenny-veggie in reply to pugdogs10]

Hi Pugdogs 10, thank you for your reply. I have had two celiac tests and they have come back ok. The consultant is concerned that the iron has caused the diohrea.  I don't understand what PA is. I joined this group as Its the only one I can find relating to anaemia. How do I know if I have PA? many thanks Jenny

[Lily73 in reply to Jenny-veggie]

Hi Jenny, I think there's probably some confusion.  Pernicious anaemia (which this forum deals with) is an autoimmune disease that causes vitamin b12 deficiency.  It's not anaemia in the 'usual' sense of the word, that is, it's nothing to do with iron anaemia.  The name is confusing in that regard.  That's why a lot of members are replying, discussing your b12 levels and associated issues.  (We know a lot about b12 as that is what our problem is!) Obviously as you can see, some members have also had experience with iron and anaemia caused by low iron.  But PA (pernicious anaemia) and iron anaemia are two very different things.

[Jenny-veggie in reply to Lily73]

I understand what you mean now, thank you for clarifying it.

[fbirder]

One possible reason for diarrhoea i iron poisoning. nlm.nih.gov/medlineplus/enc... However, it does seem that it's more often associated with an acute exposure, rather than chronic.

How much iron sulfate were you taking daily? Any more than one 200mg tablet a day is probably not a good idea.

[Jenny-veggie in reply to fbirder]

Hi fbirder. The consultant did say that it was iron poisoning. I was taking 2 X 200mgs a day. The doctor prescribed me 3 200mgs a day but I couldn't tolerate anymore.  Do you know how long it will take for my iron levels to come down? also do you know why they spiked so quickly? many thanks, jenny

[fbirder in reply to Jenny-veggie]

Wow! 600mg a day does seem a lot. 

I know there are things one can take that quickly lower iron levels, but can't look them up just now. 

I've no idea how long it takes to drop normally. 

[humanbean in reply to fbirder]

200mg of ferrous sulphate contains 65mg of elemental iron.

evidence.nhs.uk/formulary/b...

For someone who is truly iron deficient, this isn't an unusual dose.

[fbirder in reply to humanbean]

Whoops! Yup.

That'll teach me not to reply while I'm in the pub for Sunday lunch.

[Allyson1 in reply to humanbean]

But 2 or 3 times a day? Is that an issue?

[humanbean in reply to Allyson1]

It wasn't for me, and shouldn't be for anyone with "classical" iron deficiency who can tolerate the supplements. (This isn't true for jenny-veggie - her iron problem is definitely a bit different!)

I took 3 x 210mg ferrous fumarate for nearly two years. This meant I was taking 207mg of elemental iron per day. After about 18 months my ferritin and serum iron still weren't half way through the range. I simply didn't absorb it well. Things changed when I gave up gluten. Suddenly my levels of ferritin rose quite substantially. My serum iron was still in the lower half of the range though. I don't currently take any iron. Based on my last blood tests I'm not anaemic any more. I don't know how long it will last for though.

[Allyson1 in reply to humanbean]

Thank you, that clarifies! Were you ever formally diagnosed celiac btw? Sometimes it's hard to get a diagnosis.

[Jenny-veggie in reply to Allyson1]

Hi Allyson, no I'm not celiac, I have been tested twice and its come back ok.

[humanbean in reply to Allyson1]

I was tested for coeliac disease in 2010 and was told it was negative. As a result of that negative result I didn't give up gluten until early last year. I thought I was wasting my time and just making my life difficult for no reason so I was very reluctant.

But much to my surprise, as well as improving my iron absorption, it also reduced my staggering problem as well and my extremely bad temper. I've now decided that what I've got is gluten ataxia, not coeliac disease.

[Allyson1 in reply to humanbean]

I'm in a very similar situation! Initially negative celiac test, but absorption and mood improved off gluten. My doctor's opinion is it is celiac anyway.

[fbirder in reply to fbirder]

Deferoxamine can be given to reduce iron in the blood. But it's still not used in severe acute cases. merckmanuals.com/profession...

[humanbean]

Since your ferritin was low, and you still menstruate, I think your levels will probably drop quite quickly as long as you avoid all supplements that contain iron, and avoid foods that contain substantial amounts of iron. The only way of speeding up the process that I know of is to have therapeutic phlebotomy - have blood taken to lower your iron levels. But I don't know what knock-on effects that will have on your general health.

Having had this happen to you once, it is something that you will have to refer to for life whenever the subject of iron comes up. Doctors test ferritin and believe in it as an indicator of iron status. From now on they must be told that they musn't believe the ferritin result for you they must give you a full iron panel as well.

Doctors use ferritin as an indicator of iron status all the time and it really isn't very reliable. I had the opposite problem to you. My ferritin was in range while my serum iron was in my boots. In the end I had to pay for my own blood tests and my own prescription-strength iron supplements. It took me nearly two years to get my results off the floor and up to optimal.

[Jenny-veggie in reply to humanbean]

Hi Humanbean, thank you for your reply. So my ferritin is low but my iron is high. Do you know what the difference between the two is? Does it matter if my ferritin is low? Do you think my serum iron would have been at a normal level before I started supplementing with the prescribed ferrous sulphate? What I cant believe is that I have been to my GP so many times with my symptoms but he hasn't done anything. I feel like I never want to go to the doctors ever again. but I will have to as the consultant says I need regular blood tests to make sure that my iron levels come down. many thanks, Jenny

[humanbean in reply to Jenny-veggie]

Ferritin is a molecule that stores iron - one ferritin molecule will store several thousand atoms of iron.

In good health, if there is sufficient iron in blood cells and other tissues for the body's needs then any excess intake of iron will be stored in ferritin until such time as it is needed.

Bacteria need iron to reproduce. If you have an infection the body keeps iron away from bacteria as much as possible. The way that is done is to store it in ferritin where the bacteria can't get at it. This usually shows up in blood tests as low (or low in range) serum iron and high ferritin.

If someone has no infection, but has insufficient iron intake then the doctor would expect to see low ferritin. They don't bother testing iron very often because they think that ferritin tells them everything they need to know. If your serum iron was low, and there was iron being stored in ferritin, then your body should just shuffle the iron from ferritin into the tissues/serum that needs it.

No offence intended, but you are an oddity. I've never heard of anyone having ferritin in the bottom half of the range (suggesting low iron everywhere) and serum iron way over the top. I don't have a clue what this signifies.

If you want more info on the subject of iron, this is a good website :

irondisorders.org/

But whether it will cover the situation you find yourself in, I really don't know!

[Jenny-veggie in reply to humanbean]

Hi Humanbean, thank you for explaining that to me. I see what you mean about me having it the wrong way round. I will have a look at the link you have kindly sent to me. I will be called to my GP this week once he has received the iron level so I will let you know the outcome, many thanks, Jenny

[catalonia13 in reply to humanbean]

looks like I'm another oddity!

4 weeks ago my ferritin levels were once again 'above range' , been like this since last August despite having been told years ago my body would never store any excess iron and I'd have to take iron for life.

Follow-up action "no further action"

Today I get the results from the serum iron and (not surprisingly to me, as I've felt worse since they took me off iron) its below range, as is my serum transferrin level.

Follow-up action "no further action"

Yet GP has again put 'no further action'?! surely even a layman can work out if my stores are too high but my body doesn't have enough summat is wrong somewhere?

[Jenny-veggie in reply to humanbean]

ps no I know I'm not taking anything including foods high in iron until I am well again,

[Gambit62 Administrator]

PA is an abbreviation for pernicious anaemia - an autoimmune condition that causes B12 deficiency.  One potential symptom of B12 deficiency is anaemia but it is by no means the only symptom and for significant numbers it isn't the first symptom to occur - lots of people have neurological problems - not from post on thyroid community that you have been experiencing a lot of pain recently.

B12 is only found in animal products and if I read your responses correctly on the thyroid post it sounds as if you don't really have any meat/fish/dairy in your diet so a B12 deficiency caused by diet wouldn't be out of the question and would mean that oral supplementation would be effective - but its quite possible that something else may be going on that affects absorption, such as low stomach acid.

Symptoms of low stomach acid are pretty similar to high stomach acid so it often gets treated with medications to reduce stomach acid which just make things worse.

You can find out more about the symptoms of B12 deficiency on the PAS website.

You can access a checklist of symptoms here

pernicious-anaemia-society....

The body is generally really good at storing and recycling b12 so it can take years and even decades for a full blown deficiency to manifest itself.

People vary a lot in how the process B12 which means that the going by 'normal ranges' which are based on averages is not a good way of diagnosing and treating anything that is B12 related.  People can be highly symptomatic of a B12 deficiency well into the normal range - and certainly at the levels in your test in November.  Unfortunately the results are now going to be really difficult to interpret because you have been supplementing ... and there is an awful lot more to treating a B12 deficiency than just raising the levels in your blood.

It may not be the only thing that is going on but I'd be very supprised if it wasn't at least one of the things that is going on.

[Jenny-veggie in reply to Gambit62]

Hi Gabmbit62. Thank you for your reply. How could I increase my stomach acid? is there something that I can take? I have started taking acidophilus to help my gut as the iron has definitely done something to my stomach / digestive system. yes I don't eat meat or fish, I eat a bit of cheese but I have almond milk. I will have a look at the PAS website and a look at the link thank you. The pain has only started since I have been on the iron and vitamin d and its mostly gone since I came off it 3 weeks ago. I started supplementing b12 after I got the reading 362 in November. That reading was without supplementation, many thanks for your advice, Jenny

[Gambit62 Administrator in reply to Jenny-veggie]

This post should help with finding a different source of iron

healthunlocked.com/pasoc/po...

[Marz]

You say your TSH - FT4 - FT3 were in range.  Apologies if I have asked you before - but were the actual results with their ranges ?

[Jenny-veggie in reply to Marz]

Hi Marz, thank you for your reply. My thyroid levels are as follows,

serum free T3 level    5.2pmil/L   (2.1-6)

serum TSH level   1.11 mU/L   (0.1 - 5.0)

serum free T4 level   14 pmol/L   (8 - 19)

serum thyroid peroxidase Ab conc   282 iu/mL   (0-75)

many thanks, Jeny

[Marz in reply to Jenny-veggie]

Hi Jennie-veggie - your thyroid results maybe in range but the anti-body results do indicate Hashimotos - auto-immune thyroiditis.  Low stomach acid - and low B12 do go hand in hand with thyroid issues.  Your FT4 could be a little higher - around 16 - so maybe that suggests a tired thyroid.  The TSH has remained low as the FT3 is sending a good message back to the Pituitary.  With Hashimotos you can swing from under to over active.

When I was diagnosed with Hashimotos in 2005 - like you - the results were in range but the anti-bodies were very high - a 1000 +

I decided to go gluten free around three years ago - and for the first time my antibodies have reduced to around 300.

Am not a medic - just a Hashimotos girl - with a B12 issue too.

[Jenny-veggie in reply to Marz]

Hi Marz, I have been trying to be gluten free but it is so hard but that's good that its lowered your antibodies. I am supplementing B12 like everyone recommended that I do on the thyroid forum. I had my thyroid tests repeated last week so am waiting for the results of those so I will see if they are different or the same, thank you for your advice, jenny

[Marz in reply to Jenny-veggie]

Will look out for your results !  Will they be posted here or on TUK ?  Perhaps a good idea to pop them into a new post so they do not get missed !!  Sorry do not mean to sound bossy.....

[Jenny-veggie in reply to Marz]

Hi marz where do you think I'm best posting them? thanks, Jenny

[Marz in reply to Jenny-veggie]

I would post them on Thyroid UK as they are thyroid results - or you can send me a PM. 

[Sleepybunny]

Hi,

"and I have been tested twice and I am not celiac"

just thought i'd mention that I have read that it is possible to test negative on a Coeliac blood test but still have the condition. See link below. i think there are other tests besides those for Coeliac antibodies that can be done if Coeliac type symptoms continue after a negative Coeliac blood test.

coeliac.org.uk/coeliac-dise...

I am not a medic just a patient who has struggled to get a diagnosis.

[Jenny-veggie in reply to Sleepybunny]

Hi Sleepybunnny I have had the IgA test done and my result was 1.96 g/L   (0.71 - 3.79)

I had the test repeated last week and I know that the consultant said it was normal but I don't know the exact figure until I get the print off this week,

Did your doctor do all your other tests or did you have to have them done privately?

thanks, Jenny

[Allyson1 in reply to Jenny-veggie]

If you are cutting out gluten, that will interfere with the test results. You must be consuming a sufficient quantity of gluten for enough time, called a "gluten challenge" for more accurate results, but even then there is a gray area.

Once someone has been diagnosed celiac, if they cut out gluten and follow-up tests show normal antibodies, this does not mean they are cured of celiac, just that their disease is being managed.

[Jenny-veggie in reply to Allyson1]

Hi Allyson1 , yes I see what you mean. I was eating gluten when I was tested as the doctor told me to make sure I was. I'm just trying to eat less gluten now. I didn't realise how many things it is in, thanks, Jenny

[Allyson1 in reply to Jenny-veggie]

Yes, it's in a lot! For some of us shared equipment in factories or kitchen utensils is a problem too..I didn't realize I was that sensitive at first

[Sleepybunny]

Hi.

I had IBS for years eg ...absolutely no interest what so ever from all the Gps I saw. No excuse for that as I gave each of them a list of symptoms which mentioned the IBS. I was never referred to a gastroenterologist. Looking back I feel that I was neglected. For all I knew I could have had bowel cancer.

I did get a Coeliac test but like most tests I had I had to ask for it. It came back negative and at that time I was not well informed about Coeliac Disease and was not aware of other tests/investigations that I could have had. I had difficult experiences including medics being aggressive towards me and I had no-one to speak up for me. I came to the conclusion that the only person who was going to help me was myself so I decided to give up gluten and cut down dairy and my IBS stopped. I also took probiotics and cut down the amount of sugar I ate.

I have had an IgA test, paid for privately, which was normal range. What I wasn't aware of at the time I had the test was that immunoglobulins have subclasses. Each type eg IgA, IgG etc can come in more than one form and it is possible to have a deficiency in one of the subclasses but have a result that is normal range overall. At some point I hope to have test for subclass deficiencies but not sure whether I'll ever have the money.

labtestsonline.org.uk/under...

patient.info/doctor/primary...

piduk.org/

[Frodo in reply to Sleepybunny]

This is really useful information, Sleepybunny, thanks. Sorry you've had these experiences. It's so disturbing though that people are having these experiences with the medical profession, and in general we don't know what tests we should be having or when we should be referred, and so are fobbed off like this. I too had a GP getting aggressive and evasive when I asked if I'd had various blood tests - she had already decided I was suffering from IBS due to 'stress' (! Any stress I was experiencing was due to her attitude). I too cut out gluten with a fair amount of improvement, and also aspirin, which I was taking for migraine - more improvement, and something GPs never considered but a pharmacist pointed out the connection with some of my symptoms. The GP had just offered an anti nausea drug.

Sorry to hijack your post, Jenny-veggie - hope things get sorted out soon for you and you feel better.

[Jenny-veggie in reply to Frodo]

Hi Frodo, no problem, im starting to feel better with each day that passes thank you. My GP just thought all my symptoms were fatigue and anxiety and he kept telling me it will get better the longer I am on the iron. When in fact it was getting worse. So I did the right thing coming off them. I understand fully what you mean about Doctors assuming a wrong diagnosis and its a constant battle, Jenny

[retwos]

Hi Jenny my consultant put me on ferrous sulphate meds n I feel exactly the same as you do , it's a nightmare , as you don't neither do I know which way to turn I'm glad that someone finally listened to you and told you to stop taking them as your iron levels were high !! Wow that's unbelievable how no one noticed I'm wondering weather I'm going through the same thing luckily I'm at clinic Wednesday so I'll be on to them good luck with everything, n thank you for putting this out , bless ya x

[Jenny-veggie in reply to retwos]

Hi retwos, it is a nightmare, all I wanted to do was lie down when I was on them and the stomach pains and general ill weak and weighted feeling was terrible. I'm still not right now after 3 weeks of not taking them. If you have symptoms like I was having then you must make sure they check your levels. I had no idea that mine would be sky high. Its a good job that I didn't carry on taking them. Hope that you go on ok with your appointment, Jenny

[retwos in reply to Jenny-veggie]

Thanks Jenny but you bringing it up in the first place has made me think n I will bring it up , take care Adam x

[Jenny-veggie in reply to retwos]

no problem, let me know how you get on, jenny

[Sleepybunny]

Hi jennie-veggie,

I wondered if you had ever had a full iron panel of tests. See links.

labtestsonline.org.uk/under...

[Jenny-veggie in reply to Sleepybunny]

Hi Sleepybunny.  I have all my previous test results and my GP only did ferritin and then prescribed ferrous sulphate iron tablets based on that. It was the hospital last week that did the iron serum test and found my iron to be sky high. So no I didn't have a full iron test to begin with and I think that's where the problem began x

[humanbean]

I just came across this, purely by accident, and I thought it might be relevant to you :

(My bold)

"SERUM IRON: Measures the small amount of your circulating iron which is bound by the transferrin. You are looking for close to 110 for women, upper 130’s for men, based on what we’ve seen on hundreds of lab results. European or Australian lab ranges are something like this 7-27, and optimal is in the lower 20s at the least for women and higher for men. If you are considerably higher than optimal, you could have the MTHFR mutation which will need testing and treatment. The MTHFR mutation also drives the ferritin low with normal or high iron.  If all four iron labs are high (serum iron, % saturation, TIBC and ferritin, you may have the genetic hemochromatosis and you can ask your doctor for testing for that."

Source : stopthethyroidmadness.com/l...

[Jenny-veggie in reply to humanbean]

Hi Humanbean, I'm going to ask the good consultant about this. There is definitely something not right. I should find out more later this week, thank you so much for this information, many thanks, Jenny

[Jenny-veggie in reply to humanbean]

Hi Humanbean, the endocrine consultant at the hospital has written to me and said my iron levels are raised at 43 (reference range 10-25) and

my Transferrin Saturation was high at 80.2%.

My transferrin was entirely normal at 2.06 (reference range 1.68 to 3.36).

My folate level was high at 15.1 (reference range 3.0 - 12.0).

Do you understand what this all means? I've still got dihorrea and I am so fatigued and have aches and pains all over. Its really getting me down. She says it may take 12 weeks to come out of my system and it needs to come out naturally.

Also on Friday I noticed a brown patch on my arm and I phoned nhs direct and a doctor rang me, he says that's caused by excess iron, red cells breaking down.

You seem very knowledgeable, these blood tests were taken 3 weeks since I stopped taking 2 ferrous sulphate a day. My ferritin was still low on the 2nd February so my GP gave me another 3 months supply of them at the start of march but luckily I stopped taking them.

Any advice you can give me will be great please. I will see my GP about it this week but I don't really know what to say to him as I am quite upset by it all so I am waiting until he reads his copy of the letter and calls me into see him,

many thanks

Jenny

[Jenny-veggie]

Hi Humanbean, the endocrine consultant at the hospital has written to me and said my iron levels are raised at 43 (reference range 10-25) and

my Transferrin Saturation was high at 80.2%.

My transferrin was entirely normal at 2.06 (reference range 1.68 to 3.36).

My folate level was high at 15.1 (reference range 3.0 - 12.0).

Do you understand what this all means? I've still got dihorrea and I am so fatigued and have aches and pains all over. Its really getting me down. She says it may take 12 weeks to come out of my system and it needs to come out naturally.

Also on Friday I noticed a brown patch on my arm and I phoned nhs direct and a doctor rang me, he says that's caused by excess iron, red cells breaking down.

You seem very knowledgeable, these blood tests were taken 3 weeks since I stopped taking 2 ferrous sulphate a day. My ferritin was still low on the 2nd February so my GP gave me another 3 months supply of them at the start of march but luckily I stopped taking them.  

Any advice you can give me will be great please. I will see my GP about it this week but I don't really know what to say to him as I am quite upset by it all so I am waiting until he reads his copy of the letter and calls me into see him,

many thanks

Jenny

[Hidden]

Well if only we knew dangers of iron pills.same as you dr gave me 200mg ferrious sullfate 3 times daily .i took them for many years.then of late i was to,d to stop them by dr.then months after stopping I was told iron levels to high .i didn’t worry to much as it didn’t sound bad to me.i was for 4 month hardly able to function completely fatigued lacked concentration to much to mention.i didn’t understand then these feelings seemed to go on there own accord.then another visit dr said iron back down to normal.then days ago another blood test shown iron overload but higher than time before.i am completely confused as to why this is happening.dr said there must be a underlining condition.so back again this week more bloods then dr to see where we go from here.i am terrified I didn’t realise iron overload is dangerous .i hope you get better soon it’s made me very cautious about taking tablets

[Jenny-veggie]

Hiya. I can understand your concerns. I will never take iron again. Nobody has been able to work out why I can't take iron. I see Dr Chatterjee now privately and even he won't give me any iron. I feel better with very low ferritin than when I was taking the iron. I hope that you go on ok. Jenny