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Hopeless and frustrated...

Hi, I'm SFerguson

Hey everyone! Thought I would join in the conversations. I have been getting Iron infusions (Injectafer) for about 10 years now. In the last 3 years my B-12 and now Folic Acid have also disappeared. I am taking a B-12 injection every month on the first and folic acid supplements daily. I just had my quarterly bloodwork and it appears that all my levels are extremely low once again. Now my eosinophils are high. Its looking like that last Iron Infusion only lasted me about a year maybe 11 months. I am worried about constantly getting these infusions, wondering what long term side effects are and how it will effect the other problems I have.

I am super frustrated. I am accumulating autoimmune diseases like cards in a poker hand. I recently saw a neurosurgeon for a cyst on my left petrous apex that is secreting hormones that are making me lactate. He didn’t want to perform surgery but wanted to refer me to an endocrinologist. I haven’t had that appointment yet. I also became diagnosed with celiac disease about a year and a half ago. It seems that none of my doctors want to talk to each other. I feel like these issues are connected some how. I have also contacted Mayo Clinic to do a comprehensive second opinion and review my case. Those appointments start January 2021.

Just to fill you in, I have celiac disease, seronegative rheumatoid arthritis, Sjogren’s disease, fibromyalgia, megaloblastic macrocytic anemia, sleep apnea, thyroid disease, gallbladder disease, and diabetes myelitis (type 2 diabetes).

  • Post #1
  • Tue Nov 10, 2020
Hi, I'm SFerguson

I should’ve added I am only 36 years old and female. All these problems seem to be a million times worse since having my children at 24 and 35 years old. The reason we found the cyst in my head was because I have been lactating since I had my last baby, off and on. The doctors thought I had a pituitary tumor. Prolactin levels are elevated, but not off the charts. I believe the highest number in the range was 30 and mine read 36.

  • Post #2
  • Tue Nov 10, 2020
Hi, I'm SarahITP

I went to the Mayo Clinic for a second opinion and felt it was worth it.
Some advice for you that I think made it easier for me.

1) have an Illness resume-
a. Each illness in chronological order with diagnosis dates
b. Hospitalizations (with dates) and main symptoms
c. Inoculations you have had (irrelevant for me but I included it anyway)
d. Medications you are taking
2) Also include any doctors you are seeing with contact information
3) I had a spreadsheet with the labs that were most relevant to my visit (this may not be feasible for you, but if you can it was helpful)
4) Carry your medical records with you as well as sending them in advance
5) Make an appointment with each type of doctor (specialist) you need
a. In my experience they do communicate
6) Leave an extra day or two if you can incase they want to add on a procedure or follow-up appointment
7) The hospital is huge (I went to the one in Minnesota) it was helpful to have a family member (or friend) with me for support

We ate at the cafeteria which was ok, If I could have I would have packed a lunch. If you have a big break around lunch a local restaurant would have been a nice break.

The resume is also nice to keep updated for future ER visits

I hope it is a helpful visit for you.

  • Post #3
  • Mon Nov 15, 2021

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