Pernicious Anemia or Pituitary Tumor?

Posted by jenniferk07 @jenniferk07, Apr 27, 2021

Hi guys, I'm new to Mayo. Today is my first initial phone call to get set up and everything. I'm very overwhelmed but I feel as if being under the care of these professionals will lift that feeling. I'm 22, almost 23, and I've been misdiagnosed for the last 5-7 years. At first I was diagnosed with iron deficiency anemia. As do all other young females with heavy menstrual cycles do, at least I thought. But I never had normal periods anyway so that didn't make sense to me. They threw me under an umbrella of patients. I have had experienced absolutely no energy for the last half decade of my life. I've missed out on life events, jobs, etc because of my lack of energy. I had to undergo iron infusions, B12 injections and the whole 9 yards. But my doctor just won't listen. My iron has been on the lower side but my saturation is always below 20%. My lowest result was 4%. I have high Eosinophils and Monocytes. I've had a bone marrow biopsy with slight abnormalities but my doctors keep wanting to just treat me for anemia. I have a history of Pituitary Tumors that run in my moms side of family. My mom has one herself, one of her brothers and her dad all had pituitary adenomas with my uncle being the most severe and having to get it removed due to increasing enlargement and hormonal issues. They've done a MRI about 4 years ago and rejects my requests for an updated one. I originally got told from my eye doctor to get an MRI because of my decreased eyesight over 2 years and my history of pituitary adenomas. But once again, my doctors will only treat me for anemia. Even though my iron is within normal range!! Last year I had to stop taking birth control due to a "heart disease" that I was unaware of. I have always had a thinner physique but when I stopped in August of 2020 weighing 130lbs my whole life. I gained 40lbs in mostly my breasts and stomach and around the top of my back and no one seemed to care. I feel like I run one errand and I feel like I ran a whole marathon, but I'm only 22. Someone please help me get my life back or explain your experiences if you have had these same issues. Thank you so much for the support.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Lori, Volunteer Mentor | @loribmt | Apr 27, 2021

@jenniferk07 Hello Jennifer and welcome to Mayo Clinic Connect. It’s the best possible news that you are seeking treatment with the Mayo Clinic. I’m a bit biased because of the outstanding medical care I’ve received, but I honestly believe you can’t be in better hands anywhere! Mayo Clinic is a place for hope.

You’ve certainly had more than your share of anxiety and worry over your health for such a young age. I’m overwhelmed just reading your history! I’m so sorry you’re having to go through all of this and not feeling that anyone is listening to you.
From my experience, you’ll find that the doctors and staff at Mayo will take you seriously and won’t be dismissive. They tend to ‘leave no stone unturned’ in the pursuit of answers.

Which Mayo Clinic campus will you be visiting? Lori

jenniferk07 | @jenniferk07 | Apr 28, 2021

That almost brought tears to my eyes. The amount of support from the discussion boards are mindblowing. I feel so cared for and like a weight has been lifted off my shoulders. I will be visiting the Minnesota Mayo.

Colleen Young, Connect Director | @colleenyoung | Apr 28, 2021

In reply to @jenniferk07 "That almost brought tears to my eyes. The amount of support from the discussion boards are..." + (show)

Hi Jennifer, I also add my welcome. I see you are also following the AYA Cancer group and the Visiting Mayo Clinic group. In the Visiting Mayo Clinic group (https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/), you'll find tons of info as you prepare for you journey to Mayo Clinic, MN. Of course, @loribmt can answer many (most) of your questions.

Feel free to introduce yourself to the members of the AYA group when you're ready. There's also a virtual monthly support meeting (first Thurs of the month) that you can attend. See more details here: https://connect.mayoclinic.org/event/ya-me-too-young-adult-support-group-meeting-100/

As you can see, you've got cheerleaders on the sidelines. Keep asking questions.

jenniferk07 | @jenniferk07 | Apr 29, 2021

Awesome, thank you for all of this helpful information! I just got the call that I am approved and will be seen at the Rochester Minnesota Mayo Clinic on June 29th! I feel like there is hope and a light at the end of the tunnel. I miss who I used to be before all of this, but now I can see myself putting all of these years behind me and blossoming into the person I'm capable of.

Colleen Young, Connect Director | @colleenyoung | Apr 30, 2021

In reply to @jenniferk07 "Awesome, thank you for all of this helpful information! I just got the call that I..." + (show)

Congratulations, Jennifer. Please keep us posted as you prepare for your trip to Mayo in June. You know where to come when you have questions and want 'real people' answers.

jenniferk07 | @jenniferk07 | May 4, 2021

In reply to @colleenyoung "Congratulations, Jennifer. Please keep us posted as you prepare for your trip to Mayo in June...." + (show)

I have gotten my appointment moved up to this month (May) because everyday I feel like I'm getting worse and worse. I've lost jobs because of no answers and nothing to show for why I feel the way I do. I can't wait to find out what's going on. #KeepingMyHeadHeldHigh

Lori, Volunteer Mentor | @loribmt | May 4, 2021

In reply to @jenniferk07 "I have gotten my appointment moved up to this month (May) because everyday I feel like..." + (show)

@jenniferk07 Jennifer, that’s wonderful news of your appointment being moved up! What a relief for you and a boost of encouragement. Your hashtag, “keeping my head held high” shows your indomitable fighting spirit for all you’ve been through.

You’ve been given tons of information regarding Mayo~Rochester from community members on Connect. Now that your appointments will be sooner than expected, what questions do you have for us?

I spent 4 months connected to the Clinic daily and have had many return visits over the past 2 years. So if there’s anything at all you’re up in the air about, feel free to ask away!

When is your new appointment?

jenniferk07 | @jenniferk07 | May 4, 2021

I'm just confused on the week I'm there and the itinerary. They sent me everything explaining where to go and the team I'll be seeing, but the first day it says my appointment is at 7:15am but "this just insures that I will be seen" so I'm not too sure on what to do that day. I also noticed the days I was getting testing done were only 2 out of the 5 days I'm there. Also, I have to get my medical records from my Doctors here in Illinois and I'm scared I'm going to not have all the records they are needing and what to even tell my doctors here since they haven't been helpful, (Hence, why I'm a patient with Mayo now) just antsy and anxious. Thank you for your words of encouragement.

Lori, Volunteer Mentor | @loribmt | May 4, 2021

@jenniferk07
First...relax. You’re going to be in excellent hands. The campus is easy to get around, signage everywhere and volunteers in blue jackets willing and able to help you with every facet of your visit.

Is your first appointment a visit to the lab or directly to the team you’ll be visiting?
If it’s to the lab, go 1/2 hour early to get in the queue for your blood draw. If your first appointment is with the team, then just go at the scheduled time. Each appointment at Mayo is delayed by 15 minutes from your scheduled time. Take a book, iPad or phone in case you do have to wait a little. Usually the wait time isn’t more than 15-20 minutes once you’ve checked in at the desk.

As for only having 2 appointments scheduled out of the 5 days you’ve set aside to be at the clinic, there is a reason for that. This is your first visit. After the examination with your team and initial testing, they’ll have a broader knowledge of what further tests or procedures you’ll need next.
You’ll be amazed with the efficiency of Mayo Clinic. Appointments at the clinic are made incredibly quickly and your week will fill up. All the doctors, nurse practitioners and other staff members you’ll find to be incredibly friendly and helpful. They are not intimidating and the white coat syndrome will melt away after your first visit.

Now, for your peace of mind. You don’t need to give any explanation to your current providers about why you want your records. Just make sure you do this soon though. Often it takes a couple days to get records. Make sure you have CDs of any MRIs or other procedures.

Did you get a letter from Mayo with the detailed list of records they require from you? Just follow that and you’ll have everything you need.
Also, if you haven’t done so yet, setup your Patient Portal. You’ll have all your appointment information there and direct links to your care team.

Here are 2 links for preparing for your first visit. If you haven’t already, peruse them to see if you’ve forgotten anything.
https://www.mayoclinic.org/patient-visitor-guide/preparing-for-your-visit/your-packing-checklist
https://www.mayoclinic.org/patient-visitor-guide/preparing-for-your-visit/how-to-make-the-most-of-your-appointment
Are you set with your lodging?

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