Hematologist

At what point did you decide to go to a hematologist? I've been watching my ferritin take a dive for the past several months. My PCP didn't seem concerned when the ferritin was below 50. Now it's below 11 and I'm very concerned.

Im not sure if I have time to make an appointment and get the ball rolling or if I should seek out urgent care. What is your experience?

make the appointment - you will feel 100% better when you see the specialist.

Urgent care is just that urgent care - they will not be able to do anything but recommend you to see a specialist.

Getting an appointment with a hematologist here requires a referral. I had to get one from my PCP, and I still had a wait to get in. The majority of people seeing them are cancer patients -- so there's usually a bit of a wait.

I had tried to call and make an appointment myself -- none of them here do it that way.

Your luck may be different.

You have to aggressively push the issue. I have been dealing with plummeting numbers for months now. Bariatric surgeon kept wanting me to try different things, like different iron tablets, patches, etc. When the levels didn't improve (and instead went down again), I made an appointment with my primary care and we discussed things that had been done thus far. He wanted to rule out other issues like ulcers, review prior colonoscopy results, etc. He then referred me to a hematologist. She too took a conservative approach as she had a patient recently have a bad reaction to the infusion and she felt she needed to exhaust other options and she put me on more oral iron (different kind, strength). She gave me lab slips for one that day to get a baseline, and one 4 weeks out, and another one 8 weeks out.

After I got the baseline results, I immediately called her and told her I did not want to wait any longer as the levels had gone down again. I am typing this from the hospital while I am getting a mega dose of iron. It takes 6 hours to get the whole dose in. It's been a long day with issues on the dosing amount (got here at 9 am, it is now 8 pm-but I am supposed to be done at 11 pm and am getting out tonight). There was an option to go multiple times over multiple weeks or months, but I was done with dragging this out. So, make the appointment. Be insistent.

They had never measured my ferritin before this last time (just iron and hemoglobin-among other things). My ferritin is 3, so I would start the process now so you don't end up like me.

My hemoglobin was 13.7 in January 2015, 12.9 December 2015, 10.5 December 2016, 9.4 March, April, May 2017, 9.1 June 19th, 8.0 July 17th.

Iron was 63 May 2016, 22 April 2017, 16 in May and June, 11 on July 17th. Ferritin of 3 on July 17th. I had my RNY May 2015.

Even with all of these results, I would still have had the surgery. Definitely the risks of not having it far outweighed this issue that I am now working to resolve.

I agree with the other posts, Urgent Care won't likely solve the issue. Be insistent with your PCP. Good luck.

Go. Go now. It's dropping consistently, and won't stop. You should be concerned.

I get an iron infusion when my hemoglobin is under 10.

My numbers were low, ferritin of 3, but my PCP didn't seem concerned. I pushed for a referral just to play it safe. It took me 3 months to get an appointment; "non-urgent" (non-cancer) patients have quite a bit of a wait.

I finally saw the hematologist yesterday, and I'm very glad I did. My situation isn't dire, but he explained things very well and made some recommendations that were very helpful. I'm glad I didn't wait.

Would you want to share the other recommendations from your hematologist? I am looking for things that I can do to keep my levels up.

Sure! Some of this was stuff I already knew, but maybe it's new info for someone else :)

• Previously, I was taking one iron pill (66mg/day). To get my levels back up, I need to switch to four pills per day. Not sure how much other patients need to take, but that was his recommendation.
• Split the iron doses up throughout the day. Too much at one time can mess with your stomach.
• When increasing your iron dose, build up slowly by adding one (or half) pill per day. Some people get really constipated when switching suddenly to high doses.
• Take vitamin C with one iron dose to help absorption.
• Try to space the doses so that you don't take iron at the same time as calcium. I take my iron at breakfast and lunch, and calcium at bedtime.
• Don't take iron with tea. The chemicals in tea prevent iron from being absorbed properly.
• Eat more iron-rich foods like red meat. There's iron in other foods, like spinach, but it doesn't absorb nearly as well as the iron in meat.

Hope that helps!

Thanks. We were trying most of everything on your list already. Taking it 2-3 times a day. I had not heard about the tea thing, but I typically was taking it with water. I get new labs run next Thursday, so I am anxious to see what they show. I am considering trying the iron patch instead of the pills because they do tear up my stomach. I will see the doctor in 2 weeks and ask her about that. They also had me trying Vitron C for my iron which combines Vitamin C with the iron (65 mg). They also suggested taking Emergen-C at the same time (to add the Vitamin C). I am definitely feeling better since the infusion.