Back from H (Hospital, Holidays)

(I’ll edit this post with the right hormone values later this weekend, so for a more accurate and probably colourful post, please come back!) Done!

I went for my three day check-up exactly three months after my surgery and things didn’t go as well as I thought they would.

Day one:

Little Magpie arrives early in the morning, fasting (i.e. hungry) and tired after a 1.5 hour drive from home. Magpie goes right to the VIP wing of the hospital because they didn’t have a bed for her in the “normal” area (where I stayed for 16 days for my surgery). That kinda upset me because I loved the staff and I wanted to see them again. On the other hand, I was excited to see what the VIP wing was like.

Unfortunately, they were not as friendly and loving and caring as in the old wing, but I was thinking positive and I thought I didn’t need as much care as I needed after surgery and I had a bigger room (although shared), a huge designer bathroom and a TV just for me.

Anyway, let’s go back to the interesting things. My first blood test was an ACTH stress test. Result: ACTH normal, GH 15 ng/ml. What??????!!!!! So I’m like on panic and no doctor is around to whom I can address my worries.

Later that day I had MRI and eye check-up. My eyes are great, my hypophysis also, doctors say. I don’t like the fact that noone showed me the images, and no one explained me what each new feature is (like how can they distinguish between the tissue-like thingy they placed to fill the hole left by the tumor and the tumor itself). But they said there was no tumor left. Ok. No chickpea left, magpie happy.

Day two:

Still thinking positive, I say to myself I’ll find the right time and the right person to ask my questions.

GTT test with 75 g glucose. ((Remember: I’ll post the exacts results later)), but it showed a 1.5 ng/ml basal amount of GH, then up to 5 ng/ml after 30 minutes and then down again to ~1.

Even though I am trying to be optimistic (what I always am) the stress of the previous day, the lack of information, the lack of interest from the staff (I totally have to beg for them to print me the results), the worries… give me such a headache they have to give me drugs and they realise I even got fever.

Day three

I am kinda upset because noone is really paying much attention to me. Not that I have to be the centre of attention, but the main doctor doesn’t even let me finish the sentences whenever I try to ask a question!. I go for a second GTT test, this time with 100 g glucose.

((Exact results to be included later))

Again, more than 1 ng/ml before sugar, goes up 30 minutes after intake, then down again.

Finally I manage to talk to a VIP-wing doctor (fortunately not the main one, whom I had begun to hate), a very nice girl, about my age, who kindly answers me all my questions.

- 15 ng/ml of GH the first day

No need to worry. This is due to the ACTH stress test itself. It’s an stress test, and GH levels rise with stress. It’s a 100% normal answer of my body.

- Rising of GH after sugar. GH not being as low as in my 1.5 month checkup.

No need to worry. GH rises probably because I don’t like the drink (it’s true, folks, I really don’t like drinking it whatsoever and I have to concentrate myself strongly not to throw up). Important is that GH drops below 1 (or below 2, she didn’t quite remember, but she insisted my levels and my “drop” was 100% normal)

- What’s with distinguishing between tissue-like filling and tumor?

Different level of grey in the MRI. And she says she saw my pictures and it was 100% normal. And, besides, in case you were wondering, the tumor is white and the hypophysis, yellowish.

- My period is extremely short. Do I need to worry?

No, I don’t. PRL is also in the normal range. All female hormones are in the normal range. Instructions are: wait another three months and then ask the gynecologist.

- My feeling of “breathing water” when I am training.

Nothing wrong is to be seen in the MRI scan, so as long as it doesnt leak, it’s fine. I don’t even have to stop training.

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So… how do I feel? Relieved because everything is over and because results are good, the chickpea is gone…

… but I still have a bit of a sad feeling. The reason they asked me to go back to the hospital after three months was not for me or for my health. I went back just for them to do this two studies:

a) about what is better, if 75g glucose or 100g.
b) about the feelings of acromegaly patients.

Being a scientist myself, I agreed I would take part in both studies (for the sake of science) but, honestly, I didn’t really have the choice. Had I said “no” to any of them I would have been sent straight home. Or perhaps not… I’ll never know.

The second study I found it really stupid, may be it’s a bit of a prejudice, but I don’t think psychological studies are very scientific. I found myself filling in a 20 page form, font size 8, with questions like (and I swear I am not making this up) “I find myself ugly in the mirror”, “I feel depressed because I think I look like a monster”, “I think people reject me”, “I don’t have friends because of my acromegaly”, “nobody likes me”… this is just so wrong. It looked like a suicidal test.

The worst feeling comes from the fact that the main doctor said I don’t have to come back ever again to the hospital for my next check-up. Which translated means “we used you for our studies and we don’t need you anymore, so go out and find yourself an endocrinologist, we don’t care anymore”.

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To get rid of this feeling, the third day, after leaving the VIP area, I flew upstairs to the wing where I was when I had the surgery. The usual staff was there, all remembered me, all were friendly and truly very happy to see me healed. That was a bit of a relief and reconciliation with the human race.Or the magpie race. Now I am back to normal life, back from holidays, back to work, and back in the nest, and when I think of this (horrible) mini-hospital stay I just focus on the words “you don’t have acromegaly anymore“.
Nevertheless, this just made me think. I was very lucky, during the surgery nurses and doctors were caring and loving, so much I regretted going back to Munich, I just didn’t want to leave the hospital! I think this helped a lot in my recovery. I’m glad I didn’t stay in the VIP area then.

Two months later

One and a half months later I had bloodwork done and my endo went on holidays, so I had to wait until today to get the results.

I don’t feel anything has changed, my appearance is the same. As hairy (I don’t understand why) as I was when I first went to the doctor, my hands, nose, everything is the same size (because nothing had grown)… so I thought my hormones would be as before the whole story started: GH very high, IGF-1 normal. As they were after the surgery. One day somebody has to explain my how can this be.

I had an appointment at 9:55. A phone appointment.

I called at 9:52 — busy

at 9:53 … busy

(do they just hung up at 9:55?)

at 9:55 — busy

(no, apparently they don’t)

I start to get very nervous and my hands are shaking. I must be calm. If the results are as bad as I expect, I must remember it’s too early. I have to wait until the visit to the hospital in the end of july, three months later. Then we’ll see if things went bad or not.

9:57. My endo picks up the phone.

…………………… I am so nervous I drop it.

She is glad to share with me my GH drops to 0.2 after glucose test, so no signs of acromegaly in GH. Nor in IGF-1, 284, normal for my age. They removed the whole tumor and left enough pituitary gland. Pituitary is working normally, ALL hormones are ok. That’s it. I don’t have acromegaly anymore. Kein Akromegalie Zeichen (her exact words, no signs of acromegaly)

HUGE relief

Of course I must take these results to the hospital next month, I must have another IGF-1 control in 3 months, another glucose test in 6 months… but this is pretty much the end of the story.

I’ll pick up the copy of the blood test results one evening this week, and I’ll post them here. I still want to know how high is my GH before the sugar intake.

depressing post

December 2006: I went back to the doctor for one of my periodical check-ups and he wasn’t there anymore. He had retired. In his seat, a younger doctor was sitting. Very nice, very polite, the first thing he suggests is to give up the pill, I’ve been taking it for too long. Good. I stop, I wait a month, no period, another month, no period … I spend a lot of money in pregnancy tests, not pregnant. O.K., no period, no pregnancy… I should go to the gynecologist.

She said that after many years on the pill, sometimes the period takes a while before it starts its “periodicity” again, so I wait… spring, summer… nothing happens. In October I undergo a test to see if my ovaries are working, and they are, good. I wait, I wait… another week, another month, another season… I feel very depressed. My mind is full of thoughts like “I’m too young, I want to have children”, “I’ll never take the pill again”, “I just want to have my period”. Nothing else matters, the only thing I ask for every morning is to have the period back… and it just doesn’t happen. I feel devastated.

I get blood work done to see what happens to my female-hormones and PRL is too high, so I take cabergoline to make it sink. It sinks, still no period… so in the end, in December 2007, the gynecologist sends me to the endo with the following statement: “I don’t know what’s wrong with you. I can’t help you”.