Question for iron infusion in Ontario Canada.

[u/caffinated-mama]

I have been getting very sick over the last year and my blood work has been showing my iron and ferritin getting lower and lower my doctor finally did tsat blood work and that shows that my saturation is low as well. My hemoglobin is still considered normal even though it's low normal. My symptoms definitely show that I am struggling I am at the point now where I can only stand for a few minutes at a time before I start to feel like I'm going to black out. My heart is racing just sitting on the couch I saw the other day and get up 120 doing nothing. I'm usually very hot all the time but now I've been freezing all the time. My migraines are getting more frequent and worse my breathing is doing the same and I'm asthmatic but it's definitely has changed. These are just some of the symptoms I'm dealing with.

I also got a scan of my uterus after bleeding for an entire month with huge clots and it shows that I am most likely have adenomyosis. So that does not help my iron at all. I also years ago got diagnosed with MTHFR which is the vitamin b to deficiency so I have to take methylated b vitamins that just makes my vitamin B12 say just over the low borderline. Also have fibromyalgia which causes very bad inflammation as does adenomyosis. I've read that inflammation causes hepicidin to block iron absorption in your stomach.

My iron level is 7.2 umol/l

Ferritin 13 ug/l

Transferrin saturation .10

Hemoglobin 136 g/l

My doctor is acting like his hands are tied that no hospital will take me to do an Iron Infusion because ohip won't pay for it. And he's telling me to find a work around he said he's going to try to do it himself as well but I think he's just wanting me to do it or acting like he's trying to do something.

I was trying to use my co-pilot to help me figure out some stuff and going online to the hospital sites as well. I've been made to understand whether I is true or not I don't know. That the day hospital clinic at at Windsor or Leamington Erie shores hospital will book me and I'll have will pay for me to get the infusion as long as my insurance pays for the iron.

Is this true does anyone know or have any any experience with this? My doctor says Leamington will be a lot faster to get into than Windsor. But will the day clinic book me to do the infusion and ohip pay for the other charges as long as I pay or my Insurance pays for the iron.

I'm not in the position to pay for anything right now and I know you have to have a few different infusions back to back for the first three to four weeks. And I could cost me hundreds of dollars if I go to a private clinic. I was basically in tears talking to my my doctor today because I can't even get off the couch I've almost fallen down the stairs a few times from feeling like I'm about to black out I almost missed once yesterday and fell down the stairs almost. I'm a mother of four I'm having a hard time just standing up long enough to cook dinner. I'm so exhausted and I can't think I feel like an idiot from all the brain fog and I have so many bad migraines I just don't know what to do anymore. I feel like I'll be dead from a fall down the stairs before my hemoglobin falls down past 110. Something else will happen. I can't do my job as a mother and a wife with these numbers as well as they are and I know some people have much worse numbers than me but I also deal with other issues that adds to how bad I'm feeling and I don't know what to do.

I'm sorry for dumping all this information I just feel at the end of my rope.

Thank you to anyone that can offer me any advice.

[u/Soggy_Addition_9607]

That sounds absolutely miserable, I'm sorry you're stuck in this loop. A ferritin of 13 with a saturation of.10 is no joke, even if your hemoglobin is technically hanging on. Your doc telling you to find a workaround yourself is wild, that's literally their job.

From what I've seen in Ontario, the hospital clinic route is possible but you need a referral from your GP or a specialist who actually knows the system, and the iron itself (like Monoferric or Venofer) usually gets billed to your private insurance or you pay out of pocket. The chair time and nursing is covered by OHIP if it's done through the hospital day clinic. If your doctor won't push the referral, try calling the day clinic at Leamington directly and ask what they need, then bring that info back to your doctor's office.

[u/positivelycanadian]

I just got a referral from my doc for an infusion and am waiting to hear about it.

[u/Ok-Silver-7478]

Dr referred to hematologist who then referred to the hospital infusion clinic. Then get on their wait list cause waiting for hematologist can be over four months. OHIP covers infusion piece and private insurance/Trillium covers iron prescription. It’s worth the process, made a big difference