Pituitary Tumor-3 months post op

[l_ashley45]

A little over a year ago I was diagnosed with a prolactinoma. I tried bromocriptine and cabergoline and I was unable to tolerate either medication. I was told surgery was the only option. I traveled to Phoenix, AZ to Barrow Neurological Institute to have my tumor removed in December 2013. The tumor was removed transsphenoidally. I was put on hydrocortisone after surgery because of my cortisol level. Three days after my discharge I was readmitted to the hospital with hyponatremia. My hydrocortisone dosage was increased. I am now a little over three months post op. I am currently on 15mg a day of hydrocortisone, 10mg in the am, 5mg in the afternoon. I feel horrible!! I have gained 8lbs since surgery and I also experience hot flashes, cold sweats, headaches, extreme fatigue, muscle aches and pains. I have been told I may be on the hydrocortisone for the rest of my life..I am having a ACTH stimulation test done in a week..hoping that will give some answers. Has anyone else experienced these issues??

[rumpled]

I would have read it as a fail (although it was hard to tell without ranges) so I am glad you are going to stay on IMHO.

With an infection too - you should not wean. I hope you start to improve, whip the infection and get back on your feet.

[l_ashley45]

Well, I have found out a couple things. I have chronic sphenoid sinusitis. Also, I wasn't on enough hydrocortisone. My Endo was all "oh yeah, those results are fine. You're good, keep weaning." Then I called my Endo in Phoenix and told them the results and they were like "oh no, you shouldn't even be trying to wean right now because your body barely responded. In fact you're not on enough as it is." So they upped my dosage to 15mg in the am and 5mg in the afternoon. My husband and I are flying out to see that Endo this summer in Phoenix. I am hoping with the higher dosage and then seeing the ent for my sinusitis that I start to feel better.

[rumpled]

It did not double so hopefully the doctor will see that as a fail.

2.8 should be below normal and I don't know if 4.1 is as well - without ranges hard to tell. Every lab differs.

Some docs pull a *magic number* and so you don't know if he had a number you had to hit or you had to double.

[l_ashley45]

I got my ACTH stim test results. My base cortisol was 2.8, my 30 minute cortisol was 3.9 and my 60 minute cortisol was 4.1. I just picked these results up, so my doctor hasn't seen them yet..I know they're not great.

[rumpled]

It does take time. There is surgical recovery and hormonal recovery and yes, you will likely need thyroid as most get central hypothyroidism after surgery. Some also get some growth hormone issues that come on after time too.

The foul odor is likely an infection. I had that as well. It is not nice as there is no escaping it. Try steaming yourself with hot salt water in a bowl with a towel over your head to get more muck out. Keep in mind that you may get large things falling out - you cannot blow or try - but they fall out.

It also helps to get copies of your tests and reports.

[l_ashley45]

Thanks for the response! I am just really ready to feel well! I am only 20! Initially after my second hospital discharge I was on 30 mg hydrocortisone, 20mg in am, and 10mg in the afternoon. Now we've weaned it down to 15mg, they told me not to decrease the dosage for about two more weeks, then I'll decrease the afternoon dosage by 2.5mg. I also have a foul odor in my nose post op, I am seeing an ENT in a couple weeks for that. They are also checking my thyroid because of the weight gain, fatigue, etc. It is so frustrating! I joined this community because I like reading everyone's stories and knowing I'm not alone.

[rumpled]

You are on a pretty low dose of HC now - a total of 15mg. So just the dosage now that you are healed a bit can cause the weight gain as your body is probably working and the dose is added on to what your body is making. You will have to wean.

I think you doctor is being conservative due to the sodium issues you had. HC is messing with you and it is an anti-inflammatory thus the pain issues. It can also mess with your hormones causing the hot flashes and other symptoms.

When you have weaned down to about half, it may be that some of the hormonal symptoms will dissipate, but the pain issues, sadly, will continue until you wean off completely. Weaning is a painful experience as the body does not like to give up the nice HC.

Too much and too little HC gives fatigue!

You are not alone - but it takes a while for the hormones to get back in line.