Posts tagged ‘period’

Plots, plots, plenty of plots

Well, yesterday was my birthday and I have a long post and a couple of presents for you.

First of all, an easy plot: the evolution of my IGF-1

igf1

As you can see, shaded in yellow is  the normal range (for my age). Let me tell you a short story: IGF-1 was in the normal range until mid-2007.  That year, in april, I went to a random german endo to have the bloodwork done my spanish endo asked for. The guy did the bloodwork and sent me a letter with the results. There it says: IGF and GH extremely high but no visible signs of acromegaly but doesn’t say how high is “extremely high”. And so what? Did I have to wait until I got an extremely large nose to get the diagnosis? Luckily I happened to go to another endo (my actual one) in Germany later that year (december). In a bloodwork to determine the causes of my lack of period she saw, I guess, the same extremely large values of  IGF-1 (566 ng/ml) and GH (10 ng/ml), did diagnose acromegaly (despite the lack of visible signs) and started all the paperwork and tests for the surgery.

In the plot you see IGF-1 was high before surgery and then, normal. Totally normal.

The reason why I had low IGF-1 values with extremely high GH remains unknown. Some endos have suggested my GH is a rare form of GH molecule that doesn’t really work (but then, why did I grow up? I’m a girl, 1.70m (~5’7) , so I’m not small…)

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The second present is a more complicated and funnier looking plot:
the evolution of my GH.

Let me explain it first: I’ve plotted all GH values I have. Some correspond to GTT (oGTT) tests, some don’t. And to make things more complicated, some GTT tests lasted longer than others (this means, there are more columns). So, for each blood test you get a number of columns: only one?: no GTT; more than one?: GTT (the times where blood is drawn are coded in rainbow colours). Besides, I wrote some bubbles with extra explanations in an attempt to make it easier to read.

So, for instance, take 04-2008, that was one day before surgery. There are two columns: red is basal GH (~18) and green is GH 60 minutes after drinking the sugar. Now, take 06-2008, there are four columns, and according to the colour scale, those correspond to basal, 30 min, 60 min and 120 min after the glucose intake.

I know it can get a little complicated, so don’t hesitate to ask questions.

gh and ogtt

Normal range after glucose intake in a GTT test: below 2.

So, what can we see here? All the time before surgery, my GH was high. Extremely high, and didn’t want to go to normal range no matter how much glucose I drank. Yet, IGF-1 was in the normal range, so there was no reason to worry, it remained like that for 5 years.

Then, something happened (we don’t know what), IGF-1 was suddenly over the limits. GH was still behaving “normally” (for me), meaning “high” and “no suppression”. But as you know:
IGF-1 and GH over the limits + no suppresion = acromegaly.

I had the chickpea removed in april 2008 and since then, GH has been in the normal range and has performed great in GTT tests (I’m very proud of it). Three remarks to be made (and two bubbles in the graph).

  • Right after surgery, GH dropped but not enough, that led to a panic attack (more or less: why did I undergo the surgery? it didn’t work!!). Even though I shaded in yellow a “normal range” (the normal range I see when I get the results of my blood tests) GH should remain anywhere below 2 (or better, below 1). It doesn’t really matter, but after glucose intake it has to drop below 2 (or better, below 1).
  • In july 2008 I happened to have two tests done,  and these tests happened to show a GH 30 minutes after glucose intake higher than the basal (normal, fasting) value. Why? because GH is associated with stress and I felt really, really sick after drinking the solution, I was trying to remain calm but I felt terribly sick. This feeling eventually disappeared after a while and GH dropped as it should.
  • The isolated peak in september. Well, you know, never trust isolated GH values. They are not reliable and lead to a lot of non-useful worrying.

Well, that was it. This evening I’ll learn what happened to my thyroid gland and why are the nodules growing. Is that related to an acromegaly I don’t have anymore?

December 11, 2008 at 10:04 am Leave a comment

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

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

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”.

June 2, 2008 at 7:45 am 1 comment


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