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

Next

Hi all!

I feel guilty seeing the blog statistics and seeing that you’ve been visiting my blog and I haven’t been updating lately (after the good news in my last post). It’s not that I don’t want to write, it’s just that I don’t have any news to blog about.

Next week I’ll be at the hospital for the definite check-up. It will be a three day stay, so I guess I’ll have everything thoroughly checked-up. After that, I’m going on holidays (I deserve them!) but just for a week. So, guys, in (approx) 2 weeks you’ll know how did the story end. (I’ll know in 1 week, hehe).

See you then! And thanks a million for coming! And for leaving comments! I love comments! 🙂

July 24, 2008 at 8:47 am Leave a 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

Deal

When I was released:
– I could breathe normally,
– I felt ok, just a little bit weak (besides, I had lost 4 kg in 15 days).
– I had stitches in my nose (two) that would eventually be reabsorbed.
– My upper palate was still asleep.
– Sense of smell and taste were 90% back.

I had this report explaining in full detail everything that happened during my hospital stay. I went home very happy, I spent another week on sick leave and then went back to work.

I hadn’t told any of my workmates about my surgery. Actually they all thought I was back in Spain on holidays. You should have seen their faces when I explained the whole story. Well, not the whole story, I am embarrased to say I’ve been diagnosed with Acromegaly because it’s very uncommon and people usually associate it with dumb, dull giants. My acromegaly case is very rare because I had a GH and PRL producing macroadenoma and I don’t have any sympthoms easy to see (nobody but is looking in my knickers when I go to the toilet and see that my period is missing… again and breast-milk production -galactorrhoea- is not something people usually see), so I don’t need to explain.

The first month I still had headaches at least twice a week but then they disappeared. Gone. Nothing.

One month and a half after surgery:
Good: Sense of smell and taste back at 100%, stitches reabsorbed, galactorrhoea gone, period back (and -I am a vain magpie- those 4 kg aren’t back).
Bad: Upper palate still sleeping, small wound in my right nostril that doesn’t want to heal.

It looks like I made a good deal, doesn’t it?

June 25, 2008 at 1:20 pm 2 comments

Hospital stay and first results

This little magpie stayed at the hospital 16 days. Two before the surgery, and two weeks afterwards. This long stay was due to the fact that I had this local infection (bloody snots all the time) and there was a risk of it becoming a serious sinus infection (which noone wanted). So they didn’t release me from the hospital until I was fully ok.

There are two days I’ll never forget while at the hospital. The first was the “headache day”. The second was one week after surgery:

My GH and IGF-1 values were too high before surgery. I was told GH would quickly drop after the surgery and IGF-1 would take a little while, may be a couple of months.

Exactly one week after surgery I had blood work done. Surprisingly, IGF-1 was all right for my age, normal, healthy. GH wasn’t. It was 5 ng/ml. And would only drop to 4.7 ng/ml after glucose oral test.

Needless to say, this was really depressing. I expected the surgery to heal my GH levels. Everyone told me it would. They even said my case was an easy one and I didn’t need to worry! Moreover, how can they explain the drop of IGF-1 if GH is still too high?

Nobody was able to give me an explanation. Doctors only said that after the surgery, hormones are a bit messed up, it’s too soon… we’ll have to wait… Which is not what they said before. That didn’t reassure me at all!

Anyway, I am a very optimistic magpie. I thought: long time ago I had GH in 20 and IGF-1 normal, and everyone said I didn’t have to worry. Now I have GH in 5 and IGF-1 normal, so I’m better than ever!

That’s right, I’ve never had such a good GH level (since they started measuring it), so I can be glad. The important hormone is IGF-1, and that’s normal. I just have to wait and see what happens.

They release me from hospital, I have to return in three months. In the meantime, I’ll go back to my usual endo and she’ll have something to say… let’s see what!

June 17, 2008 at 8:38 am Leave a comment

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