Ferritin levels: Hi there, I have ferritin levels... - Thyroid UK

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Ferritin levels

Rickyk profile image
13 Replies

Hi there,

I have ferritin levels of 11 and for the past since months I had the following symptoms. Exhausted, poor concentration, achy glands and joints, Sore veins in hand and right thigh, tingly arms and fingers as well as feeling cold.

My thyroid test came back normal and I've been put on slow release iron. I have history of IBS so only on one tablet a day.

I feel so tired though with brain fog. I can't do cardio due to energy levels and feeling breathless. Any advice would be greatly appreciated.

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Rickyk
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13 Replies
SeasideSusie profile image
SeasideSusieRemembering

Rickyk What is the range for the ferritin test? The aim is to be half way through the range.

How much elemental iron is in your slow release iron and how much do you take daily?

If you don't​ already, then take each iron tablet with 1000mg Vit C as that will aid absorption and help prevent constipation.

What are your thyroid test results? Normal doesn't mean anything. We need to see the actual results​ and the reference ranges. Doctors are fond of saying everything is normal just because it's in range, but where in the range is crucial.

Have you also had the following tested

Vit D

B12

Folate

The tingling might be low B12.

Rickyk profile image
Rickyk in reply to SeasideSusie

Hi there,

I believe normal range is 12 upto 140. I was 11.

I'm on 322mg ferrous fumarate, equivalent to approx 100mg ferrous iron. I take one tablet a day.

I don't have my exact results but I'm

Back at docs on Thursday so will ask. I'm not sure regarding B12.

Thanks for your response.

humanbean profile image
humanbean

One tablet a day isn't going to do you much good, no matter what type of iron supplement you take. You'll be trying to raise your iron levels forever.

What, specifically, have you been prescribed to raise your iron levels?

Do you have any idea what causes or triggers your IBS?

Do you have acid reflux, heartburn and/or indigestion.

How does the IBS present itself?

Do you have diarrhoea or constipation?

Do you eat gluten?

Do you eat meat?

Do you eat any special kinds of diet or avoid any specific food?

Do you have copies of your thyroid test results and nutrient test results?

Rickyk profile image
Rickyk in reply to humanbean

Hi there,

I'm on ferrous fumerate 332mg/100mg ferrous iron.

I don't have acid reflux. It's more excess wind, bloating and abdominal pain. I often am constipated (without iron tablets) and feel like I never empty my bowels. I also get a sore lower back.

I eat gluten but I find that I struggle to digest white bread and pasta and even white rice can cause my stomach to go slow. If I eat too much white bread/processed things like donuts then my stomach almost goes on strike. I feel it not working, I am not hungry for hours and often vomit very indigested food, although I ate hours before or the evening before.

I eat meat and a lot of green vegetables. I feel my diet is good 90% of the time.

I've been tested for crohnes and diabetes - both have come back negative.

I'm been under the doctor for around 4 weeks now with no improvement.

I'm on fluoxetine as I struggle with depression so I am on it occasional to increase seratonin levels. I am unable to exercise at the moment due to weakness and feeling breathless which isn't allowing me to lose weight gained also. I feel it's a viscous circle!!

Thanks for your response.

Saggyuk profile image
Saggyuk in reply to Rickyk

Well I think you answered your own question lol. Many of us have coeliacs or gluten intolerance and will cause all these symptoms and nutritional deficiencies as effects absorption in your stomach. Unfortunately you have to be 100% gluten free including cross contamination for these symptoms to go away and it will take at 3-6 months for any immune reaction to gluten to calm down so only eating a little each week will keep you ill.

If gluten free doesn't work and you've ensured not a crumb has got into your diet, then you should get to the bottom of your IBS - In my own opinion, IBS does not exist and is only the thing diagnosed when the docs can't figure it out. If the gluten free fails, you can try an elimination diet to see if any other food types are the cause such as dairy.

You can try to get them to test you for coeliacs, but the blood test is unreliable and can only be ruled out by endoscopy and even the endoscopy wont rule out NCGS so you might just want to try GF anyway.

In regards to the iron, as seaside susie mentioned, vit C will help aid digestion of it and I've also found porridge helps it not cause too many issues with my tummy.

Hope you get to the bottom of it soon :-)

Rickyk profile image
Rickyk in reply to Saggyuk

Thanks for you reply. I eat very little gluten to be honest and usually eat

Meals without the carb addition. But I haven't eliminated 100% like you have suggested. Definitely worth a go. My test results showed that I didn't have an allergy to gluten but as you say it may not be very reliable!

Saggyuk profile image
Saggyuk in reply to Rickyk

I had the same issues and could barely eat anything but was still eating a little gluten all the time and was just bad all the time. It was only when I gave it up completely that things started improving. The problem is, it can take six months or even much longer for you stomach to heal properly. I felt awful the first two weeks but then things started improving especially with the tiredness after about three or four weeks which kept me on it and little bit by little, it mostly all disappeared. My iron levels are better also. They have now diagnosed me with NCGS as there was too much evidence with my other health conditions but they don't usually diagnose this. Well worth a try even if just to rule out with certainty :-)

Stick to the natural non processed GF foods at first such as potatoes/rice/meat/dairy/veg/fruit/nuts and seeds and read up on cross contamination on coeliac uk website - change your toaster lol :-)

humanbean profile image
humanbean in reply to Rickyk

To raise your iron you are likely to need a higher dose of iron than you are taking. You can buy iron supplements that the NHS prescribes without a prescription in the UK. You can either buy online or you can buy in pharmacies with the agreement of the pharmacist (it is their decision whether or not they sell prescribed iron supplements without a prescription - they can refuse). I've bought with no issues from Lloyds Pharmacies and from Tesco Pharmacies, but Boots have been uncooperative.

What the British National Formulary (BNF) says about prescribing iron - the BNF is the doctor's "bible" that tells them what they can prescribe and at what dose :

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

I've bought Ferrous Fumarate in two strengths - the ones that you have been prescribed which I'll refer to as FF332, or you can buy Ferrous Fumarate 210mg (FF210) in boxes of 84. The maximum dose of FF332 is 1 tablet, twice a day. The maximum dose of FF210 is 1 tablet, three times a day.

Each dose of iron should be taken with 500mg - 1000mg of vitamin C. This has two benefits. First, vitamin C helps the body to absorb iron. Secondly, iron supplements may cause constipation, and high dose vitamin C will cause diarrhoea. The dose of vitamin C should be adjusted to keep your bowel moving at a comfortable speed.

There are other iron supplements available or alternatives to iron salts for those who don't tolerate iron very well. They are discussed in this document written by one of the admins on here - helvella :

dropbox.com/sh/3waycnbzhywi...

One of the best ways of supplementing iron without supplements is to eat liver or black pudding a couple of times a week.

feel like I never empty my bowels

It is possible that you don't. If you have internal piles then a) the piles may make you feel as if you are never empty, or b) the piles can stop you emptying completely, or you may even have an internal prolapse, but your username makes me think you are male, and internal prolapses would be much more common in females.

You could experiment with over-the-counter micro-enemas which just empty the rectum rather than the whole bowel or gut.

You can get glycerin suppositories without prescription. You might like to buy some cheap plastic gloves to administer the things with!

Or you could try one of these :

expresschemist.co.uk/pics/p...

pharmacyonline.com.au/media...

For a full box of 12 it costs between £8 and £9, but pharmacists are often willing to split a box and just sell a couple or however many you want to experiment with. I wouldn't suggest using any of these things very often though - they should be a last resort.

You are much more likely to feel better if you could increase your fibre intake. If eating plenty of fruit and vegetables (preferably vegetables because fruit has a lot of sugar in it) doesn't do the trick then you could try a fibre supplement. Fybogel is one possibility, but it is expensive. It contains isphagula which is another name for psyllium seed husk. You can buy loose psyllium seed husk powder much more cheaply than Fybogel is sold for on Ebay and Amazon. If you are interested, buy the loose powder, not the capsules, because you can tailor the dose to your requirements. Only buy a small amount to start with (or you could try one small box of Fybogel to start with) - some people can't tolerate a high fibre diet.

Psyllium seed husk powder should be put into a generous amount of water, then stirred thoroughly, then drunk quickly, otherwise it swells up and ends up with a consistency like jelly and could block the gut. You can flavour it with squash or fruit juice. It's own natural flavour and texture makes me think I'm swallowing wallpaper paste.

Rickyk profile image
Rickyk in reply to humanbean

Thanks! I have fybogel prescribed - it is foul but just about drinkable! I'm a female and have a long history of bowel problems which has beeen diagnosed to be IBS by doctors (no tests done to confirm). Thanks for your response. I will ask for a higher dose of iron from Doctor and purchase myself if they don't provide it.

humanbean profile image
humanbean in reply to Rickyk

I was tested for coeliac disease with blood tests, an endoscopy, and biopsies from my gut. The tests came back negative. As a result I continued eating gluten for another 5 years. Then I eventually gave up gluten as an experiment and I got noticeable benefits within a week.

I was severely low in iron and supplementing iron raised my levels very, very slowly. It took me nearly two years to raise my levels to optimal, and in the end I only succeeded in getting my levels optimised after I gave up gluten.

There is no point in almost giving up gluten. It has to be done 100% or you may as well not bother. I will agree that the idea is intimidating and annoying. I still wish I could eat gluten. And realising that most beers contain gluten seriously annoyed me. But the benefits I got have made it worthwhile. Based on the symptoms I had that improved I have gluten ataxia rather than undiagnosed coeliac disease. But giving up gluten did improve my gut eventually.

It is possible that giving up gluten might not work for you, in which case, after a trial of 3 - 6 months, you could go back to eating gluten again. Alternatively, you may get some improvements but still continue to have problems. There are other dietary interventions you might want to try, but I would definitely suggest only trying one thing at a time, and re-introducing anything which doesn't have any effect on how you feel.

1) You might have problems with lactose and/or casein, both of which are found in animal milk products - milk, cream, yoghurt, cheese, ice cream, many puddings, etc. Giving these up could make the difference for you. If it makes no difference you could go back to eating milk products again.

2) You might need a low histamine diet. (I'll let you investigate that.)

3) You may have problems with nightshades - there are many lists of nightshades on the web.

4) You might have problems with fibre and need to eat a low fibre diet.

5) There is a diet which helps some people called the GAPS Diet or the Specific Carbohydrate Diet (neither of which I know anything about).

I will admit that the only thing I've done myself is given up gluten. I've never tried anything else, although I am beginning to realise that sugar in all its forms gives me problems and I am starting to reduce my carbohydrate intake.

The aim of all this is to get rid of your IBS. Once you've found what causes your IBS then you will start to feel a whole lot better, and more importantly you will start to absorb nutrients from your diet far more successfully. And once that happens your energy levels are likely to be transformed.

SlowDragon profile image
SlowDragonAdministrator

Also get your thyroid antibodies tested. Very common to have gluten intolerance when we have autoimmune thyroid- called Hashimoto's

Your antibodies can be sky high, but other thyroid tests appear "normal'

Hashimoto's & gluten intolerance both can lower nutrient uptake, get vitamin D, folate & B12 checked and make sure you get the actual figures (including ranges)

Rickyk profile image
Rickyk in reply to SlowDragon

That's really helpful - thank you. I will ask for these on Thursday. I've felt like this since November and gained half a stone which will not shift no matter how good I am!! My mental health is missing the exercise too so can't wait to feel normal again!

Rickyk profile image
Rickyk in reply to Rickyk

Doc has taken me off iron since there is no improvement and is now testing me for rhuemtoid arthritis amongst other things ! She seems as confused as I am.

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