Hi guys it's me again but this time it's a moan about my ferritin levels, had a 2nd re-test last week and just had my results today:
Ferritin is now 23 range 28-260.they have changed the range on this now.
Back in january my iron was a miserable 10 which was under range again-i think the starting range back then was 12 and i managed in march to raise it to 27.
I am waiting referral appt to GI and Heamatology as i do have celiac and follow a gluten free diet and soya free, possibly a absorption problem.
Just feel annoyed that i have been taking floravital liquid (ferrous gluconate) 20mls one a day for nearly 6 months and nothing but a slight nudge maybe!! I think i know what you will say "its not strong enough to do any good"😊 i think it is time to bring out the big guns and try a gp prescribed one again, i did have a nasty rash with ferrous fumerate so do not want that again! What do you think? Ooh i do eat lambs liver and dark veg but not enough to make me like pop-eye. ☺☺
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How much liver do you eat? I raised my ferritin from around 35 to 119 by eating 120-140g per week. There's lots of other iron rich food too - see apjcn.nhri.org.tw/server/in... try to include as much as you can in your diet.
Thanks SS i eat liver twice a week since last August and i would say its a good handful size and plenty of kale etc, i think it is probably the liquid iron as its only 19mg-i think its mgs??😊
I didn't take any iron tablets, just ate liver once a week. I wonder if you've got an absorption problem, eating that amount twice a week would certainly have improved my ferritin level.
Don't eat kale with your liver - the oxalic acid in it will bind the iron in the liver so you won't absorb it. Steamed, eaten away from liver, it should be fine.
Hi there yes im guilty of aluminium😕 and water just escapes the flouride treated areas but was told by severn trent its not added but would be naturally in piping underground anyway-if that makes sense reallyfedup? I really need to invest in a cast iron pan-i will google, i know they are expensive but all round i will be healthier too.x
Hi R - like you am still using coated pans with fluoride, but managed to get set of stainless steel pans at Tescos. Cast iron pans can be so heavy to lift in an out of the
oven - I love earthenware cassseroles, or even some of the special glass casseroles - pyrex, which keep the flavour in, and the metals out. I have a melamine kettle with stainless steel. You can buy a water distiller for about £150 which is the only way to remove fluoride. from the water. Chlorine and other chemicals can be removed by water filters with cartridges - maxxtra is a larger filter and removes most chemicals including chlorine.
Thanks for the info thats great, my pots and pans have gone in the bin already, lol i have one stainless steel milk saucepan-my hubby is hanging onto his credit card for life-he knows im going to spend!!.xx
Just checked john lewis but it was very pricey but hey i have just ordered a cast iron casserole dish £45 and a large griddle pan for £36. And a saucepan for £30. Argos!! Arriving tomorrow. 😊😊
I found exactly the same with floravital and similar things and spatone - my level actually fell! Referral to gastro and haemo may give some clues. Didn't work out why I can't maintain iron levels so I just take a course of ferrous fumarate and vit C every few months.
Thankyou Angel i know you are right about the floravital as its quite weak-i have made gp appt next week to bring out the hard stuff as im remaining hopeful it will raise ferritin-just got a new large bottle of floravital aswell!! Hey what if i double the dose just to use it up?
Might be of some interest, but I've been told it's good to help top up iron, but not strong enough to deal with a deficiency (and you don't know exactly how much you're taking). However it could be worth trying over and above the stuff you're taking now? Just in the short term.
Aaw thanks cooper i am very iron deficient so do need stronger stuff but thankyou for the link i will have a look later-all help much appreciated.😊
Hi R - have been on a gluten free website concerning celiac disease - they say 32 percent of celiac patients have not been referred with low ferritin levels on the NHS to haematology and GI. As the NHS only thinks of gluten as the main factor in allergy or intolerance, if you have multi allergies they can all affect the gut and digestion.
It can lead to damaged duodenum, so the ferritin cannot be absorbed. Some cases are treated by iron injections as well as B12 even though their B12 might be ok. This is not for pernicious anaemia but for iron deficiency anaemia ha! Suppose you will have to wait for
a member of a team to see you - but ask if you are going to the larger hospital or the Queen Elizabeth as it is the major teaching hospital and may have better diagnostics.
I'm sorry to say different hospitals are a bit like chalk and cheese. I still cannot use private message service and have had no contact from administrators. Think they must be overloaded with work.
Saw no no private messaging😕 never mind, thanks for info g, yes I'm still waiting and I think you are right I do need the iron injection as only few weeks ago my iron had not budged at all!! Felt defeated back then but yes my b12 is tops I think you are smack on there. I have gp on 6th august to discuss me having iron injection instead and also the fact that my periods are very heavy and my fibroids need looking into adwell, once again I'm on a mission, had bloods done yesterday as well, I'm going out shortly taking k to trampoline centre with a friend, they have aircon!!!!😀 .xx
glutenfreetherapeutics.com is the website with article on celiac disease. Every symptom listed might match yours explaining that iron deficiency anaemia is holding up your progress. In my day a GP would ask questions within weeks if you came back, and refer you to the right department or even arrange for iron injections at the surgery.
As you have had this problem over 6 months I am so sorry your practice has let you down.
They have let me down!! Its disgraceful and many other people who are just turned away as GPS think oh well just take the tablets and you will be fine, not even thinking about why we are low on a important component within the body, this lady is not for turning on the 6th august I want what I came for!! G, I'm still at new cross hospital in wolves as I thought maybe its better the devil you know sometimes, lol😀 I will always call you G!! H does not have the same ring to it.😊
Why not call me I or f fghi ha! I had the op in my 30's -
and had thyroid problems with hyperthyroid at the same time.
Enocrine specialists were non existent when I had all these problems.
Nowadays they do a different op which is much quicker to recover from.
The only thing it is psychologically damaging, - you feel you are made a granny before your time. I had thyrotoxicosis before and after the op, but no one wrote it
up until I asked for a private consulatation, where I was led to a good physician but he was not an endocrinologist. I am going to look up some natural methods and answers to hormone deficiency which might involve progesterone deficiency. I am sure these
will not be useful! Take care ii
Looked up hormone deficiency and menoraghia heavy periods and the reply was found instantly thyroid hormone deficiency is the highest cause of heavy periods!
So you have an answer which has now helped me understand how ignorance of endocrine and hormone deficiencies can damage women's lives unnecessarily.
May be if you had the right thyroid hormone drugs given to you would feel better.
There is information about heavy periods, which can help - this will be to avoid alcahool
and certain hot spicy foods mustard, and the star culprit low iron.
Vitamins D ABC and K are helpful for heavy periods but progesterone deficiency is another hormone deficiency which can give rise to heavy periods which may be part of menopause
but most women don't get this. Progesterone can be found in high amounts in sweet potato - I tried one for the first time - I liked it. Potatoes are a source of progesterone but
not as high as sweet potatoes. Have a good week end - Source for sweet potato as help for
progesterone deficiency comes from Katherina Dalton endocrinologist. British. in wiki.
Ah ha heavy periods!! Plus I have fibroids which were found 6 years ago but small at the time so god knows how big they are now eh?
Looking back I'm better in some respectbif symptoms but not in others, Endo says if symptomatic next year they will take out, can't wait then, that's a lot of good info you have given me there- big thanks. When are you're family coming g? I'm home now, sitting in the garden just chilling , its so hot even though its overcast now😀
They are coming tomorrow evening. My daughter has fibroids uterine cysts and thyroid trouble - she has remained on the same dose for over 10 years - but she has never been revised. In this area they say when the meno is over you won't get the problem - but most women can't live with it. I found I was heaps better after the op, but still had thyroid problems which were never followed up - too nervous to go near clinics - my daughter is the same age as you - but seems better after going on a diet. She lost a stone - have to say
my thongs can now reach round a size 14 - my goal! The joy of buying lower sizes is terrific - have celebrated my weight loss with some raspberries and beskos thick whipped cream with oats ---x
Fantastic weight loss, hey it will be a size 12 thong soon, same as me, I cannot wait until my periods have gone, god that will be my celebration, you have been through so much in your time, you deserve a break. 🙌
I agree with you - expect you will find iron injections helpful. I did with post natal haemorrhage. Nurse came in for week. Someone needs to kick these related departments
into action as they are not treating your conditions as part of a whole.
Too many delays in referrals - and cancellatons have left you in limbo struggling on with no input from your GP. Interesting about hospital referrals - some clinics in our area get to Liverpool and Manchester - and Oswestry in shrophsire..but a clinic down the road may have different referral routes for treatment in another hospital.
You have to ask if your practice manager the route of referral - looking up the
other hospital in Worcester with integrated services for endocrine gastro and liver and may be gynae they might be of interest though I know you are plodding on with the devil you know. Expect you can find out your total options in hospitals as you need better advice and treatment than you have had. better If you can't access the treatment then it might be better to find a practice with a different route of referral. I changed my practise
which has a different route of referral and have had better treatment since doing so.
Ooh g I just typed out a huge response 5 mins ago and K shouted me and I hit a button and lost all of it😠 I hate that!!
Yes I think back over the months and think that maybe I have not been a complete pain in the ass to the GPS at my surgery, I've always stood my ground but have not nagged them enough , several months later nothing has changed and I have maintained the same lousy low iron level, below range!! I've got appt on 6aug to see about this iron and I want a injection- when I last mentioned it a year ago gp said it would leave a scar on my stomach and he said no take the meds, well if that's the only reason because of a scar... I'm not bothered about it , I'm not a teenager prancing around in a croptop!!
Its so good to hear you back, I expect you are busy with your family now, missed your snippets of info, I joined this site a year ago today I think-penpals for a year now g. Xxx
I had the injection in the buttock - when I had severe anaemia - I had injections for over a month. I would not be happy with a response concerning an iron injection when my health was severely undermined with such scare tactics. People with pernicious anaemia
have to have routine injections, and I can't think they would do these in the stomach.
If the iron has to be passed through the duodenum, before the large intestine, then I can't see what good it would do for an injection in the stomach. Expect the gastro guy should sort this out and may be you should have an ultra sound on your colon to see if there is inflammation? Will have to look up about iron injections for celiac disease - policies change much to the detriment of patients health. We are in their hands and if we are not allowed to know what and why they are doing something, that makes us lack confidence.
Best of luck on the 6th. We are buddies in our quest to feel normal and lead a full and active life.Well done R. Good on yer. gii.
Don't worry g I will sort it out, did you have any side affects from injection and how long till you felt more better with it?🙌
I'm afraid I'm completely out of date with information. Have been reading about intravenous iron therapy. F G ha! is the name of a safe intravenous iron preparation that has had no side effects. As you have so many food intolerances, including malt barley you have to avoid any dextran preparation. Intravenous iron therapy needs a specialist nurse /M.A , doctor to do the injection, but results are seen within an hour of the infusion.
H. There are some recent types but you have to avoid anything with dextran. Think you could ask gastro/ haemo/ specialist about this treatment. FG was used in 1999 in Europe.
You would be wise to tell your specialist about all your food allergens/intolerances including gluten as you can find out which type of intravenous is suitable for you.
The NHS are still behind research and may still use ordinary iron injections, which may not
take as well. if you look up intravenous iron therapy uk you might find out if there are any hospitals which actually use this therapy in your area. Think your GPs are out of the ark giving you such duff info!
Thankyou soon much for your info as I would not know where to start with all this, its a lot more complicated-bi did think the injection and the infusion was the same thing!! Right its the infusion I will be asking for and thankgod you mentioned my celiac as you would not think that a infusion would have any gluten containing ingredients. That has made me think that when I took gp"s ferrous fumerate tablets which I took months back (last year)did these contain gluten? I only took them for a week as they made me very I'll.
I wonder how other Celiac's get on with iron preps, I think I will put out a post later on gluten free site.
Hope you are enjoying family down, hey how is your granddaughter D?☺
Research in the US shows that some people are unable to absorb oral iron so with their celiac disease intravenous iron therapy is indicated. The epithelium in some patients taking oral iron can be irritated, so intravenous therapy is better. Some intravenous iron therapy preparations might contain malt - which you have a food intolerance to, - the older brands with dextran can cause anaphalactic shock if the patient has an allergy.
Ferrous gluconate is one infusion which might be safer for you. Your specialist should be aware of the food allergens you have - and you should know the brand and type of preparation they will use. I don't know about the iron compound you took but it did not work. Some people might register iron but may not be able to uptake it.
The intravenous therapy can be effective so you feel better soon within days rather than weeks or months. You have had a poor uptake over a period of months with no check ups with speedy results to show why the oral iron is not being absorbed.
Some infusions might take more than an hour to infuse - some half an hour or less.
It all depends what is safer for you. Just ask about intravenous therapy as you are so low with symptoms of heart problem and tiredness. If you have my experience you might have to fight for intravenous iron therapy, and if they say injections are ok, I would question the side effects of iron injection which might make your feel ill, over infusions which have less iron in them but are readily absorbed giving better results. You could ask your nurse if she administers intravenous iron therapy - that may point you to a hospital or unit which is qualified to do these intravenous treatments Have all the grandchildren with us and managed a day out to a local woodland park with trampolines animals fairies gipsies
zip wire , We had a great picnic and was able to keep going throughout the day without flaking out. My granddaughters are great - happy at school and looking forward to camping holiday in France. My grand sons are all naughty up to tricks, playing with water
pistols, and larking around. Lovely to see them all together. We bought a bed sofa which is very comfortable though not being a double bed size - we lost weight so we don't knock each other off!
The research refers to a history of intravenous iron therapy using different facilitators to help absorption. It can be found in an article "Intravenous iron therapy how far have we come? ncbi.nim.nih.gov/PMC/articles/pmc3459360. It is particularly interesting for celiac patients, as some may have other intolerances other than gluten, such as barley, in malt, from which the newer intravenous products are formed. If a patient has an allergy test privately, sometimes it won't be recorded in NHS notes. The NHS has no duty of care to update case records with private information, I believe. Correct me if I ma wrong.
Thanks g that's great help, the iron prep I am still using at present is floravital which is ferrous gluconate, I know I have a real hard job on the 6th to persuade doc that I do need something that is going to work more effective and quick, and what with being celiac and heavy menstration with fibroids and a iron level that has not budged-things need moving along.
Before you go perhaps you could ask your practise to update your food intolerances/and allergens which you had done privately, as this might be helpful when you see the specialist. ii.
Good idea, I will do that, just called gp to see if any appts are sooner as mine is the 8th not 6th, nothing till 20th though, never mind, I'm off to mums now, tarahh for now xx
Toorah! Hope your mums's cats are ok - mine has bolted as she does not like the family dog! Have a good week/end. ii
Had busy week - swimming every day now wun is back - hope it is sunny with you -
- think it's your your intestinal specialist who should help you with the low blood iron as for some reason you are unable to absorb it properly orally which is the route advised
usually for iron. It might help to go privately for a second opinion to someone who
explain what is happening. Gut inflammation can affect iron uptake as well as inability to uptake some protein enzyme - - see how you go net week.xx
Hey great!! So happy you are back in water, your like a fish👍. Yes I will see what Wednesday brings with gp, GI appts are worse than endoc appts as they are are as long as your arm, still waiting for mine again and haematology. Waiting lists in my area are usually around 6 months, where my sister lives its a year- in Ireland, she's been waiting for a endoscopy for 8 months now.
Yes had a busy week here too, we have been to Blackpool pleasure beach in the week, trampoline park, arranging trip to Alton towers next week for K and her mate, she is still watching her sugar G, my little girl has lost her puppy weight now, she looks lean. Taking mum to opticians today. Speak soon.xxx
That's the trouble with endless waiting lists - we have an 18 month waiting list for some specialists so many people go privately. Some folk are on operation waiting lists for over a year before they can get a hip replacement op. We lived in Lancs and Cheshire and kids went to Blackpool and Alton towers . Went on big dipper with kids and friend - remember screaming whilst my teeth froze and nearly dropped out - it was so scary. My daughter was cackling as she decided she did not want to get on the ride.
I looked up hospitals which do the iron transfusion treatment - the Royal Berks do it, and you most likely can get it locally from a private clinic. Can you imagine within a couple of days you could feel so much better rather than hanging on for another delayed appointment. There is a London private clinic that does it - but guess that's too far away.
Will keep scouring for tit bits which you can ignore at your leisure. I. Private message service running ok.
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