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How do I know if my ferritin levels are going up?

(32 Posts)
BloodyBloods Thu 14-Jan-16 11:14:43

My ferritin level was 8 a few months ago, and the GP told me that was fine. It isn't fine - I feel terrible all the time. I am tired, to the extent that I spend all day lying down, and I feel very dizzy when I am lying down.

I was losing a lot of hair and the hair loss has slowed down to more like normal levels now, so I am wondering if my ferritin is heading upwards. But I don't feel any better. In fact I feel much worse.

I am starting to wonder now if there is anything else wrong with me. The GP said I must be depressed as the levels are not low enough to be causing physical symptoms. I went back to see if I could get bloods done again, to see if it had gone down, gone up, whatever, and the GP said I had anxiety as I had already been told I was fine and I was asking for unneccesary investigations. I really don't want to go back, and I physically can't get anywhere else.

I don't feel depressed or anxious, particularly. I feel knackered and weak all the time. I have no energy to do anything. I am quite worried about feeling like this but I don't think that constitutes anxiety considering how shit I feel?

I am taking iron but it is making me very sick and I don't know how much will be absorbed in that case.

Pleasemrstweedie Thu 14-Jan-16 13:30:06

If your ferritin was 8, it was low enough to make you feel very unwell need.

It needs to be at least 70 and preferably mid-range for you to feel well and the biochemical processes that require ferritin to be supported.

Ferrous sulphate and ferrous fumarate are often not well tolerated and doctors know this, but seem reluctant to acknowledge it.

Other iron supplements are available. Check out Cytoplan or research haem iron.

WhatWouldLeslieKnopeDo Thu 14-Jan-16 13:38:34

8 is low enough to have symptoms. Mine went down to 2 once. I felt grim.

The only way to tell for certain that the levels have increased is to have another blood test. Do you have one booked? I have ongoing iron issues so I have a test every few months. When it got ridiculously low I had tests more frequently. But the fact that your symptoms are improving is definitely a good sign.

I haven't been able to tolerate any of the prescription iron supplements. I now take Feroglobin capsules. They don't cause me any tummy problems and they seem to work as at my last test my haemoglobin was almost in normal range and ferritin was much better too.

SmallGreenBouncyBall Thu 14-Jan-16 13:45:55

first of all low iron/haemoglobin is a symptom not a diagnosis and it needs investigating where it comes from (shit diet, coeliacs, heavy bleeding, parasites)

can you ask a different gp for a second opinion?

dottyaboutstripes Thu 14-Jan-16 16:49:33

I've got ongoing issues with low ferritin, my GP did say that it was generally accepted that low ferritin wasn't going to cause any problems but that only fairly recently it's become clear that low ferritin makes you feel like shit (I've paraphrased using my own words wink) so in wondering if your GP is an older person? I take iron prescribed for me and it does rise, so I stop taking them after a while, and so it goes on! I've had so, SO many tests that the GP has decided it must simply be that I have periods and my body can't cope, so our plan is to continue as we are. It's not ideal but at least I've had every test they can think of and I'm being taken seriously. If go back to see a different Dr if I were you.

BloodyBloods Mon 18-Jan-16 14:14:19

Hello, thank you for the replies. I've seen every GP at the surgery but it says on the screen of my records that I have requested unneccessary tests. Heavy periods are the cause, I'm sure.

Yesterday I really thought I was dying, I felt so bad. Today I have dropped the children at school and come home and gone straight to bed and this is me just getting up to go and get them. All the lying around is taking its toll on my body too. I am very breathless when I try to move but they are saying you only get breathless when your haemoglobin is low and mine is ok. So they are saying the breathlessness is anxiety too.

I am really struggling. I have no quality of life and neither do my children because I just can't do anything with them.

I am starting to wonder if there is something else wrong with me. The doctors are adamant the low ferritin is not causing any of this.

I've been offered anti-depressants at each visit but I don't feel down so I haven't taken them. I have exited an abusive relationship and this is detailed on my medical records and I think they have just decided I must be depressed. I would take anti-depressants if I thought they would help me but I think my mood is ok.

I have been back again and it was the same stuff again. I am too scared to go back and mention any other physical symptoms I am having because they seem to have me down as a hypochondriac. Before all this started I had not been to the doctor for years, literally 3 or 4 years and before that it was just stuff like UTIs.

I've ordered the feroglobin. I'm just on spatone at the moment. I don't know what to believe about spatone. They say you absorb more iron from it but it is such a low dose compared to the tablets. The tablets make me ill. I just don't know what to do.

I'm so cold all the time too.

I've had to tell people what is going on because I am not even able to focus on what people are saying to me, or even remember their names half the time. Everybody has just said can they not give me an injection but the GPs are clear that no treatment is required.

SmallGreenBouncyBall Mon 18-Jan-16 14:41:37

what is your vitd/b12 like?
do you feel better in summer?

BloodyBloods Mon 18-Jan-16 15:18:39

My b12 was ok and my vit d was good. I have been supplementing both since I started to feel this bad. I sort of talked myself into thinking it must be low b12 making me feel like this as the symptoms seemed to match precisely and I was astonished to learn my b12 was ok. Same with vit d - I only spend minutes per day vertical and out of the house and I couldn't believe my vit d was ok. I was actually a very outdoorsy person before this started so I have no enjoyment from spending time in the house.

I am no better in summer. We attempted one day out in the summer holidays, about an hour away. We stayed for less than 2 hours and I had to stop to go to sleep on the way home and call for someone to come and collect the DCs. I don't think it is SAD -related

This can't be normal? Yet the GPs say it is.

GingerNutRiskIt Mon 18-Jan-16 15:23:41

Mine was 7 and I felt like shit really ill. They put me on ferrous fumerate tablets for 5 months and I'm not sure what my levels are now, but blood tests recently came back with levels boing ok.

Pericombobulations Mon 18-Jan-16 15:29:36

Not sure the figure, but mine were under 10 and I was given iron tablets too. After googling, I discovered iron tablets with vitamin C (mine come from waitrose but boots sell them), which helps absorb more of the iron and dont drink caffeine drinks for an hour around taking the tablets. I also take them with food to soften the blow so to speak,

I feel very dizzy, breathless and cold too with in.

BloodyBloods Mon 18-Jan-16 15:32:40

I have ferrous fumarate and it gives me a really upset tummy so I wonder if any of it is being absorbed. I have tried building up gradually from one a day to three a day but it makes me feel so awful I just can't take it. I take the odd one but then I am stuck on the loo the next day. Same with ferrous sulphate.

I know the solution is probably to take the sodding tablets but I really am trying and they make me so ill. I am probably on 3 a week instead of 3 a day as I should be.

BloodyBloods Mon 18-Jan-16 15:38:20

I have iron+vitamin c tablets which have 14mg of iron. I am able to tolerate them but somebody said that is because the dose is so low. Did you find they made a difference?

I am typing this from my bed and the headboard of my bed is filled with jars of b12, vit d, and iron.

BloodyBloods Mon 18-Jan-16 15:42:31

Good tip about avoiding caffeine. I have given up coffee and I am not a tea drinker anyway (I think tannin stops iron absorption). I am trying to avoid dairy and eggs as they inhibit absorption. I have been taking small amounts of juice as the vit c helps. I am the size of a bus as I am not walking more than a few minutes a day and I am eating crap because I have no energy to stand in the kitchen. I realise neither of these things are helping but I just can't do any more than I am doing.

TheGreenNinja Mon 18-Jan-16 15:46:47

Do you know what level your b12 was at? I've fairly recently been diagnosed with pernicious anaemia which causes low b12 and your symptoms really do sound like low b12. The trouble with oral b12 if you have PA is that you can't absorb it through your gut and you need to have b12 injections. Low ferritin is often linked to low b12 as well but sometimes people get symptoms even though they are technically within an OK range. I think anything under 250 is classed as low enough to need replacement but optimum levels are more like 500+.

BloodyBloods Mon 18-Jan-16 16:01:33

These results are from before supplementation, apart from the ferritin, as I had started taking iron a few weeks before I got tested.

B12 408
Vit D 105
Ferritin 8

Since these results I have been taking 500micrograms of B12 daily (and have bought a jar of 1000micrograms to have when that one runs out) I am also taking 2000iu of vitamin D every day. I have been supplementing those since late September.

I read about the B12 deficiency and I thought, that's me, that's me! And I was very surprised to find that my levels were as high as that. I really do have the brain fog.

grimbletart Mon 18-Jan-16 16:07:57

Did your blood tests include folic acid levels? For some reason doctors don't make it a routine test. Low folic acid can cause anaemia, lethargy, fuzzy brain, feeling faint, breathlessness and other symptoms.

Doctors are quick to test for B12, not so much for low folic acid.

BloodyBloods Mon 18-Jan-16 16:11:25

Is that serum folate? 7.4 I don't know what the range should be?

GingerNutRiskIt Mon 18-Jan-16 16:23:54

Yeah the ferrous fumerate gave me pains when I took them at first, probably for the first two weeks but then it settled.

BloodyBloods Mon 18-Jan-16 16:46:07

I've googled the range for serum folate and it is 4.4-20 so I am less than mid range. I think I might supplement. It's this clutching at straws and constant buying of supplements that is frustrating. I am just so desperate to feel better.

Ginger, how quickly did you build up the dose of ferrous fumarate? I have tried so many times to build it up slowly and given up.

Pleasemrstweedie Mon 18-Jan-16 16:49:23

Sounds like your folate is a bit on the low side as well. Look for a folacin supplement rather than straight folic acid. Jarrows and Solgar are good brands, both available on Amazon.

As for iron supplements, ferrous sulphate and ferrous fumarate are the work of the devil and even taken with orange juice, I had the same problems as you. I couldn't get any help from my GP and the pharmacist told me there were no other supplements available. My endocrinologist referred me for an infusion and the haematologist refused me as I was one point within the reference range.

I posted on MN and some kind soul PMed me and suggested I look at Cytoplan and they saved the day. Have a look at their iron supplements and then give them a call. I'm sure if you ask them nicely, they will send you samples to try.

MsMims Mon 18-Jan-16 16:57:49

Have you ever had your thyroid checked OP?

BloodyBloods Mon 18-Jan-16 17:02:37

I'm looking at Jarrow Methyl Folate 400micrograms. Would that be any good? Thank you Pleasemrstweedie, you are always on my threads smile

You have mentioned Cytoplan before so I will check them out. I have been slow off the mark as I have tried so many iron supplements. I have even taken out Amazon Prime as I have bought so many different products. I am going to need to take all the useless ones to the pharmacy for disposal. The pharmacist is quite attractive and I have started going out of my way to a different pharmacist as I am sure he is just looking at me thinking about my heavy periods and I would rather he was looking at me and thinking of asking me out [deluded]

Not that I have any energy for that sort of caper these days.

BloodyBloods Mon 18-Jan-16 17:06:17

TSH 1.67. GP said not thyroid. Was worried it was thyroid particularly as I am very fat and was experiencing hair loss but hair loss has stopped and fatness is explained by appalling diet and total inactivity.

WhatWouldLeslieKnopeDo Mon 18-Jan-16 17:46:33

Did you order the Feroglobin capsules? They have folic acid in too so you probably don't need to order any separately, especially if you are in the healthy range.

It's frustrating, but try and only introduce one new supplement at a time or you won't know what is helping or causing side effects.

I have always been confused about Spatone too. They claim to be more easily absorbed, but the only studies I could find were by the company.

My GPs are always trying to encourage me to try other types of iron as the Feroglobin are low compared to the prescription ones. But like you I simply cannot tolerate the prescription ones, certainly not the dose they want me to have. Whereas I have been taking the Feroglobin every single day for months now. So I have definitely taken in more iron overall, just at a slower rate smile

I have just had my latest blood results. My haemoglobin is very almost in the healthy range and my ferritin is up to 8. It was 7 last time I had it checked. I am feeling quite well, but that is in comparison to being so anaemic in April that I needed an iron infusion.

I am quite tired, and often sleep in in the morning (I don't have children!). My joints ache. I get breathless (possibly just unfit as haven't been able to exercise much for other reasons). Dry skin, hair thinning etc.

Your GP surgery sounds dreadful. I am horrified that they are all writing you off as "just" depressed angry

Many years ago I saw one GP who wrote off my symptoms. Then I saw a nicer GP who sent me for blood tests. But when I phoned the surgery for the results the receptionist said, "oh, Dr Twat has put a note saying your test is fine and you do not need another appointment". He kept doing it. Could one of the GPs you have seen be doing the same?

Is there another surgery you could move to?

Do you have any bowel symptoms? Coeliac disease can interfere with iron absorption, for example.

TheGreenNinja Mon 18-Jan-16 18:04:45

It sounds a total nightmare. I'm in a pernicious anaemia support group on Facebook and there are so many people who seem to have the same battle for diagnosis (not saying that they all have PA, but all have similar symptoms). A lot get written off with depression or CFS. I hope you manage to get some answers, I'd try a different doctor (or even surgery) if possible.

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