Posts tagged ‘Results’

“Bad news?” or “Does running affect GH?”

sad_cartoonThis morning I went to pick up my last bloodwork results and I was shocked to see this:

IGF-1 309 ng/ml (114 – 492)

GH 12.50 µg/l (0 – 6.88)

What is this supposed to mean???

This is a blood test done at the beginning of september. One week later I talked to my endo on the phone and she informed me of the results. She only said, IGF-1 is 309, that’s good. Everything is all right. Call the secretary for an appointment in 3 months for a glucose tolerance test.  I asked if I could have the results printed and she said, whenever you come along, ask for a copy. So I thought everything was all right and I was happy. I called for an appointment for a GTT and that’s scheduled for monday the 1st. I was close to the doctors today and I walked in to ask for a copy of that bloodwork… and then I found that GH is way higher than what it is supposed to be.

Shock.

This, automatically brought me back to the beginning of my condition. For a loong, loooong time, my GH was way too high and my IGF-1 was in the normal range. Every doctor I saw told me not to worry, if IGF-1 is in the normal range, I am not ill. They explained the IGF-1 is a measurement of the GH of the last 24 hours and that GH could be anormally high in some moments of the day. But then, one day, IGF-1 was not in the normal range anymore. They said I had a GH (and PRL) producing tumor (the chickpea) and you know the rest of the story. Noone was able to explain why I had GH anormally high throughout the years with a normal IGF-1 and suddendly, the IGF-1 was not normal anymore.

So, obviously I am concerned. Is this the beginning of the nightmare again? Will it be like this (GH high, IGF-1 normal) for a few years and then, unexpectedly, IGF-1 will rise again and will I be back to the neurosurgeon? The only thing that keeps this little magpie from getting depressed is very simple: I ran to the doctors the day of the test. And when I say “ran” I mean sprint really, really, really fast. Well, I was late… I asked the nurse while she was doing the test and I was still trying to catch my breath if the running would anyhow affect the hormone values, and she said no. I guess she didn’t know what she was taking the blood for, because I’ve read everywhere that sport rises the levels of GH.

The question is, could a sprint be responsible for such a high value of GH?

Next GTT: monday the 1st.

Next Endo appointment: monday the 8th.

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November 26, 2008 at 9:51 am 6 comments

Prolactin levels

Thanks to Alecia‘s inspiring graphs, this is the evolution of my PRL.

The worrying story began with the galactorrhea: one day I found out my breasts were producing a milky substance, even though I wasn’t pregnant. Not much, just a few drops and only when pressing around the nipple. That’s why the endo that prescribed me the pill (because of the increased hair on my arms) sent me to the gynaecologist, who asked inmediately for an MRI and there it was! the chickpea. But, apparently, an innocent one.

I was taking the pill, and I was told that the pill sometimes rises the PRL levels. My endo prescribed cabergoline (Dostinex), the usual drug to make prolactin levels return to normal, but as those weren’t worrying enough (neither for her nor for the subsequent endos that I had) I was told to stop.

Then, a few years later, I stopped taking the pill (on purpose) and having the period (not on purpose) and a PRL check showed an alarming increase: 62.79 ng/ml. It was summer of 2007, I was already in Munich, my new gyn told me to take cabergoline (Dostinex) again. PRL dropped, but my period didn’t show up. So she sent me to another endo, who did a thorough hormone analysis in december, found out that the chickpea wasn’t innocent at all and I was sent eventually to the neurosurgeon two months later.

Right after the surgery (and by “right after” I mean “the following day”), the PRL levels dropped to nearly non-existent. Galactorrhea stopped and I got my period back, on a 29-day regular basis.

prl1

(Not all PRL values that I have are shown, but just the most significant ones)

Apparently, my PRL levels were too low to suggest a PRL-producing adenoma, but it was. It produced both PRL and GH.

November 6, 2008 at 1:06 pm 5 comments

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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”.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

August 13, 2008 at 12:20 pm 1 comment

All’s well that ends well

I’ve tried to post an online graph, but not successfully so I’ll post my GH values instead:

2002 my very first hormone blood test shows

PRL 26.6 ng/ml

This raises the fear of a prolactinoma, they MRI the chickpea for the very first time. Further blood work underwent in the following months.

2002

GH 20 ng/ml suppressed to 14 ng/ml after glucose tolerance test
IGF-1 118 ng/ml normal.
PRL 27 ng/ml high.

2002 – 2006 (several times, similar values)

2006

PRL 34 ng/ml high (max is 20)
GH and IGF-1 high (but doesn’t say how much).

This is the first time IGF-1 is not in the normal range.

2007

PRL 62.79 ng/ml very high.

2007-12

GH 10 ng/ml
IGF-1 566 ng/ml
PRL 34.70 ng/ml

2008-01 Glucose tolerance test (GTT)

IGF-1 624 ng/ml (max 492)
t=0 GH 11.40 ng/ml
t=15 min GH 10.40 ng/ml
t=30 min GH 10.30 ng/ml

2008-04 At the hospital, one day before surgery

PRL 890 uU/ml (different units, max is 500)
IGF-1 612 ng/ml
t=0 GH 17.6 ng/ml
t=60 min
GH 14.9 ng/ml

2008-05 At the hospital, one week after surgery

PRL 43 uU/ml (20 times less than the previous week!)
IGF-1 273 ng/ml normal!
t=0 GH 5.25 ng/ml still high, but better than ever!
t=60 min
GH 4.83 ng/ml

2008-06 One and a half months after surgery

PRL 9.83 ng/ml normal! (max: 20)
IGF-1 283 ng/ml normal! (max: 492)
t=0 GH 0.31 ng/ml normal!
t=30 min GH 0.23 ng/ml
t=60 min GH 0.22 ng/ml
t=120 min
GH 0.23 ng/ml

Happy ending!

July 7, 2008 at 10:10 am 3 comments

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.

July 1, 2008 at 10:27 am 5 comments

and then it happened:

GH 22, IGF-1 512

That was december 2007. I flew back to Spain for Christmas feeling very depressed because I didn’t have my period. I didn’t care about growth hormone or insuline-like growth factor. I just wanted my period back.

My parents asked me what I wanted for Christmas and I just wanted my period back. Something (unluckily) out of their reach. And then it happened. On the 6th of January the Three Wise Men bring presents to spanish children… and, believe it or not, they brought me my period back! Just 11 months later than the previous one, but I swear it was the most amazing thing ever happened to me. I couldn’t believe my luck! I was so happy… 11 months waiting for the period can drive any magpie crazy.

I flew back to Germany to have my glucose tolerance test done and I wasn’t worried anymore, I had my period, nothing worse could happen!

BUT

I had another test in january. My IGF-1 was higher than 600 and my GH didn’t sink after the tons of sugar (GTT), just dropped to 17 after 1 hour, I believe. To be honest, I was calm. I had heard plenty of times my spanish endo saying that my GH behaviour was kind of weird but I didn’t need to worry. My german endo drove my attention to IGF-1. It had been normal while I was in Spain and it was way too high now.

– So, little magpie, (doctor says) you need surgery.

I protested, my hands are normal size, I wear the same rings as I wore in college, my shoe size has been constant since I was 18, my nose.. ok, my nose is not very small, but so is my dad’s and so it has been since I was 5 (magpie has frantically checked all her pictures to search for any changes).

– But, miss magpie (the doctor insists), you don’t want to wait until your limbs grow like a monster’s, do you? You don’t want to have your tongue so big that it doesn’t fit in your mouth anymore, do you?

That was convincing enough, I needed surgery.

I went home with a nice yellow piece of paper for a new MRI with “acromegaly” written on it and a brochure about acromegaly with a picture of Andre the Giant on the cover. The Princess Bride was my favourite film as a child but … Is that made to cheer me up? In no way I look like him! So I get depressed again.

Don’t get the impression that I get depressed all the time! I am a very optimistic magpie!

June 3, 2008 at 7:39 am Leave a comment


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