Ferritin has been low for 4 years - now up to 80 but still feel dreadful!

[Hellington Boots]

Hello,

I have had low ferritin for four years now. It's a bit of a long story, but i suddenly became very unwell in 2012 - with dizziness, fatigue, blurred vision, irritability and generally feeling very drained and unwell. At this time my ferritin was 5, my GP wasnt very interested and just gave me iron tablets which i took three times a day.

3 years on I had still only managed to get it to 15. My hair was shedding badly and i felt so dizzy and blurry all the time I was no longer able to drive. I did a lot of my own research and realised that a medication I was on for a hiatus hernia, known as omeprazole, inhibits the absorbtion of iron and other nutrients. I came off this and within 6 months my ferritin has increased from 5 to 81! I know this is great news, after three years of my GP doing nothing and refusing to refer me to a haemotologist, and also not making the connection themselves that the omeprazole was causing the problem, my ferritin is finally going up! But i still feel awful, not have my symptoms have changed.

I am feeling so anxious and low about this. I struggle in to work everyday but it's a real struggle and sometimes i lose my balance, cant think clearly (brain fog has been such a problem) and feel like im going to faint.

I just wondered if anyone else has any experience on this? I know the range is wide. I wonder if perhaps my levels need to be higher to feel better, or if my body needs to get used to being at this level for some time, or am i just going totally mad?

I had loads of dizziness, vestibular and balance tests a couple of months ago to rule stuff out, I have had a brain, neck and spine MRI, everything came back fine and my GP agreed the symptoms are most likely because of the low ferritin. I've clung to hope for years now that i could get it up and now i have i still feel the same.

Any guidance or support welcome, I'm at the point where it's dominating my every thought and i feel very very low and stressed.

:noangel: Thanks lovely folk. x

[Bonnibelle]

I could have written this.

My ferritin was 8, 3 years ago. It rose to 15 last summer and to 31 by December. I have just had it tested again today. Last year I had awful fatigue, weakness, off balance feeling like i walk on a trampoline as I walk (which I find triggered awful anxiety in me that's not left) weak feeling in legs often and a general fatigue where I just need to rest alot.

Have you had your thyroid tested? as this seems to be my problem. Also have you had B12 checked? I have a borderline underactive thyroid which my GP still won't treat despite me being over range on the bloods and he still calls it borderline, grrr. Anyway, when he tested it he also tested my ferritin and B12, both were low. They 're now increasing but I still feel all the symptoms you are feeling. I know my ferritin at 31 is still low but optimum is around 90-100 I think. Also with thyroid issues b12 and ferritin are always low. All 3 just make you feel awful, i know as I am going through it.

I have awful brain fog, low mood and anxiety too because of all this ill health and fear of what is wrong. You've had an MRI which is great so you don't need to worry. I haven't had an MRI, I have had 3 GP check ups and they tell me there is no need and that the floor bouncing as i walk is down to the chronic fatigue I have and my anxiety about it. I feel just like you where every day I hate how I feel, feel anxious about all my symptoms and worry I will collapse or be dizzy if I go out anywhere. It's not nice and I am sure anxiety makes us feel much worse than we already do.

Take care.

B

[countrygirl]

My first thought too was have you had your thyroid checked recently as you have alot of the symptoms of underactive thyroid.

My ferritin levels are always at the bottom end of normal but have been all my life but my blood count is very good.

[Hellington Boots]

Hello to you both!

Thanks for the suggestion, and you are clearly spot on because the doctor has just tested that along with a load of other things, B12 being one of them i think. So I will be sure to ask him to tell me about those results when they come back.

Awful isnt it, the floor moving beneath me feeling is horrific. I havent driven the car for three years because i feel so dizzy. My partner has to drive me everywhere, bless him he's so nice about it, but i feel like a child again!

Thanks for the support, seems there are many of us having this struggle. If this goes on much longer i think i might need to consider counselling.. I am driving myself mad with my own thoughts and continuous ruminating/wondering.

Thanks for your support and kind suggestions. xx

[Bonnibelle]

I am going through the same thing. Some days just doing the school run is hell for me.

I posted yesterday, I think my post is down the second page now, about how bad I have felt for a few months now. The dizzy ground moving feeling is by far the worst.

Do find out your B12 result and Thyroid (TSH and T4) actually get the numbers because many GP's tell us we are fine when we are very low or high in range. My GP hid from me I had low results so I got a print out and was shocked at how low my numbers were. I went private for a thyroid test recently to prove to him he was wrong and got a private GP's diagnosis, my GP then agreed I was right.

Good luck.

B

Hello to you both!

Thanks for the suggestion, and you are clearly spot on because the doctor has just tested that along with a load of other things, B12 being one of them i think. So I will be sure to ask him to tell me about those results when they come back.

Awful isnt it, the floor moving beneath me feeling is horrific. I havent driven the car for three years because i feel so dizzy. My partner has to drive me everywhere, bless him he's so nice about it, but i feel like a child again!

Thanks for the support, seems there are many of us having this struggle. If this goes on much longer i think i might need to consider counselling.. I am driving myself mad with my own thoughts and continuous ruminating/wondering.

Thanks for your support and kind suggestions. xx

[Pastycakes]

Wow, I'm going through a lot of the same! I feel horrid all of the time. Off balance and the fatigue is unbelievable. I've also had tingling in my left hand and thigh, along with lots of other weird symptoms. I've been to the doctor so much in the last couple of months trying to figure it out. I've had all kinds of blood work and the only thing that shows up is low hemoglobin and ferritin. Hemoglobin is 9.6 and ferritin is 5. I usually have lower hemoglobin due to having Thalassemia, but my ferritin is usually at least 20, not great, but better than 5. B12 is okay, thyroid is normal too. My hematologist is really concerned about the ferritin. She is referring me to a GI doctor to check for internal bleeding, and of course this has me terrified of stomach or colon cancer. I have a lot of digestive issues and have been on Nexium for about a year now. I wonder if this has caused my ferritin to drop? Like the omeprazole caused it with you? I also had a miscarriage 3 months ago and lost lots of blood, but my hematologist says that isn't the cause. She has me on iron tablets, but they seem to be really hurting my stomach. It's so tender and sore right now. I'm having some weird pains in my hips as well. (Now I have myself worrying about ovarian cancer) I'm also having diarrhea AND constipation. Anyone else have problems with the tablets? Do you guys have very heavy cycles? I don't really think I do, so I'm nervous about what's really causing this.

Also, I just had an MRI of my brain because of the tingling and off balance feelings. That came back okay. I was so scared of getting the MRI, I was convinced I had a tumor or MS. If you're scared of those things, just know you're probably okay too! This anxiety and the fatigue caused by the iron deficiency can really make you feel some weird things. Good luck to everyone. I know we all just want to get back to enjoying our lives!

[Hellington Boots]

Hi Pastycakes,

I'm really sorry to hear of all you have been through the past few months. That does sound very tough!

I would certainly suggest you do a bit of your own research in regards to Nexium. I was on that before omeprazole, (I think Nexium is esomeprazole isn't it?) They are a very similar drug, and both a proton pump inhibitor. PPI's stop you releasing so much stomach acid, and not having much stomach acid is what causes you to have trouble absorbing iron and other nutrients, because there is not enough acid to break down the food completely. In my case, my doctor didn't see a link but I googled it and there's a clear known link. I wouldn't suggest coming off Nexium without getting proper advice, it may be that you do need to be on it for the moment, but certainly do your own research online and see what you think. Unfortunately GP's don't know everything, they know some about lots of stuff but they aren't necessarily specialists.

I was really worried about my MRI too, MS has totally been a big worry! Even now, I still worry could it be that and it I just wasn't picked up in the scan.

Hoping for the best for us all! Take care of yourself. xxx

[Pastycakes]

I've looked up some stuff about the PPI's and deficiencies. I've mentioned it to my doctor and he said it could be possible, but can't really know for sure. I'm just really scared of the possibility of stomach or colon cancer. Or even ovarian or cervical. Especially because I started getting the discomfort near my hips. Can't imagine iron supplements can cause all of that. Geez, it's just one thing after another, isn't it? :lac:

[Hellington Boots]

I know! Some days it really does feel like that doesnt it.

Have they done some tests in regards to your stomach and given you any sort of diagnosis?

It's very hard to keep going day after day when you feel low, ill and anxious. Hope is a powerful thing though and I'll try and cling to that for as long as possible.

xxx

[Pastycakes]

It really sucks. I feel like all of this makes it impossible to be the mother and wife I should be.

My doctor told me to start taking nexium about a year ago and I've been doing pretty well on it, but now it seems everything is falling apart. I had an upper abdominal ultrasound a couple of weeks ago and that was fine other than gallstones I already knew about. They also looked at my ovaries 3 months ago before my miscarriage, and only mentioned a cyst. Would cancer develop that quickly?

I wish our bodies wanted to work for us and quit scaring the crap out of us!

[Hellington Boots]

Hi Pastycakes, I completely understand your concern about cancer. Naturally that is one of the things we worry about the most. It sounds like your body has been through an awful lot in the last few months so it's no wonder you feel so rough. Are they referring you for an endoscopy? I had stomach problems for a whole year and I was so worried it was cancer or something sinister. It turned out to be a hiatal hernia, easily managed with lifestyle choices and doesn't really bother me now. Please try to put thoughts like to the back of your mind. I'm sure your test results will come back absolutely fine. xxxx