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I have been on ferrous sulphate for a year and prior to that I was on 3x a day iron tablets (over the counter). 2 years ago my ferritin was 9 and now it's 6 and my hemoglobin was 11 so despite oral iron treatments and an increase in iron in my diet and total avoidance of anything which may inhibit absorption, all my counts have been gradually decreasing.

I've had a lot of respiratory problems over the last 2 years, shortness of breath, chest pain, fatigue. Prior to all of this I was a really healthy, in my 20's, excellent blood pressure, a BMI of 21, exercise (and still exercise) 5x a week for at least an hour and a diet full of fruit, vegetables, legumes and lean meat and fish so it's all a bit odd really. My energy levels and endurance with cycling have definitely dipped significantly - I've given up doing anything competitively over the last year or so and generally just stick to cycling as my regular commute for work etc - I work in a very environmentally friendly office where everything is kitted out for cycling and greener transport options. I also feel like I've lost a lot of my strength and much weaker i.e. struggle to lift heavyish things which were not a problem a year or so ago. I've also had a lot of unintended weight loss which has left me looking quite gaunt and everyone keeps telling me how ill I look. I have quite a big lymph node under my jaw on the right had side which is painless but has been gradually getting bigger and bigger over the last 10 months - it is quite visible as my friends usually ask me what it is and it is about the size of a largish egg. But I wanted to make an informed decision about the IV iron before jumping in as I have heard it has a lot of side effects and do worry about pumping that amount of iron into my body in one short session - especially if my hemoglobin is only 9.2 (although it will probably be lower when I next go as it seems to be dropping a lot faster now).
Jalopper: My iron issues were discovered by accident, and I tried pills for about a year before being sent to a hematologist. My ferritin was a 3 and my hemoglobin was in the 8's. We started infusions at that point.

Rocstar: What has your doc said about the big lump?? I would be really concerned about that! If you numbers are decreasing despite the pills and you are eating right it really sounds like infusions are in your future... you shouldn't have to put up with the symptoms you are having.

Keep in mind, that you will find many people on the internet talking about their bad side effects from infusions...because people with bad side effects are generally more vocal than people with no side effects. I've had no bad side effects from my infusions but of course some people do. You have to weigh the benefits vs possible risks for yourself.

And you do not have to do it all in one dose. I am getting 100mg once a week for a few weeks right now instead of a "total dose."
A quick update - I went back to my hematologist on Monday and got half the normal iv iron dose. So far it's been ok but I have had some side effects, pain in my joints arms, knees hips and spine but I have found that the pain is a lot better if I keep myself moving. Also I seem to be very puffy so I don't know if it's water retention from the iron but hopefully it all goes away by next week. By the time I went in I was so tired I could barely function and despite all the ferrous sulphate my ferritin has dropped to a 1 and my hematologist said I was now severely anemic and they would be looking at having to do a blood transfusion, so faced with that I will much rather put up with the IV iron. We still don't know what the exact cause is - it's looking unlikely that it's due to any excessive blood loss but I am waiting for the results of one more gastro test.

As for the lump (lymph node), it's got slightly bigger and I am seeing a surgeon about taking it out as soon as an appointment is available - plus I have others which are above 2cm. They are more worried about the possibility of hodgkin's or non hodgkin's given my age and other medical problems I have been having but they took some bloods to look for things like mono, LDH etc. I go back in a few weeks time so hopefully my hg and ferritin will have shot up and hopefully the lymph nodes will have gone down but as they have been getting bigger since last year I'm not holding out much hope.





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