More health updates with results and figures within a month or so, I promise!

BUT I do check this e-mail address every other day looking for any comments you leave in the blog or any emails you send me (click on the link on the right hand side, the envelope, to do so). Please, if you are new to the blog and feel like asking tons of questions, do not hesitate to contact me! I am always willing to help. If you are not new to the blog and feel like asking tons of questions, just do it!

Solution to the mini-quiz. The picture post-op is the one where I look thinner (the one on the right). That’s the only change I have noticed (so far) in the before-after pictures. I am a few ng of GH and 5 kg healthier.

* Hands and feet: Recently I’ve been back to my parents’ and I’ve been trying old rings and old shoes… and guess what? I could wear the same shoes I wore to high school (10-15 years ago) because they fit perfectly (only they are not trendy anymore… and.. yes, for the record, I still keep some of them) and I could wear the same rings I wore back then (fashion trends and common sense put them -thank God- far, far away from me). I have normal size feet  (size 39) for my height (1m70).  My hands are slightly larger than average woman’s hands but, according to the rings, they haven’t changed in size in the past 15 years. I think having larger than average hands is due to the fact that I’ve been playing the piano since I was 4. That’s 24 years of playing the piano, and must have an influence in the body.

* Nose: I also looked through all the pictures and… well, given that the only feature that I might have larger than others is the nose, I was drawing my attention to the evolution of my nose in the last 28 years of my existence. And I’ve always had a slightly broad nose (which was of some concern when I was a teenager, but so were my freckles also). Well, blame my dad for that. My sis got my mother’s thin nose. I got my dad’s.

* Lips: well, I am one of the blessed ones. My dad gave me the DNA of full lips. Not as Ang.elina J.olie’s, but still

* Ears: I have/I’ve always had small ears. And they remain small. Again, coming from my dad’s side of the family.

* Jaw: apparently you know that you have an enlarged jaw when your teeth were together and now they are apart. My teeth were together prior to acromegaly diagnosis (after wearing brackets when I was 10) and now they got even closer together (thanks, wisdom teeth, now I’ll have to wear brackets again).

So, the usual symptom: enlargement of body parts … discarded.

Another of the symptoms of acromegaly can be hirsutism. Too much hair on the arms, face, legs… Well, yes. That’s what took me to the doctor’s some years ago, at the begining of this journey. A hormone review (including GH and IGF-1) showed that it was due to… nothing!. They also checked my ovaries looking forPCOS, but nothing was to be found. All doctors told me that I didn’t have that much hair, that there are out there real hairy women, that I am a normal one. All right, women in Spain tend to be hairier than in.. let’s say, Sweden, and they have to wax their moustaches. I still don’t have to wax or remove any facial hair, but I did see a change: from nothing at all to some thin blonde hairs and despite that’s less than 80% of the women I know, it was 100% too much for me and my skin type (fair and thin skin, freckles, light brown hair, a bit red -which I dye darker-). Later (a few months ago) a possible cause was found: a very, very light form of polycystic ovary sindrome (PCOS)… but I am not really sure. PCOS was diagnosed a few months ago, but hair has been for a few years already, when no PCOS was present.

Well, no enlargement, no excessive hair growth… what remains in the acromegaly symptom list? Headaches. Yes, I did have headaches. I already knew I had the chickpea (the adenoma) but I didn’t have any acromegaly symptom. I did have high GH but I didn’t have high values of IGF-1, so I wasn’t acromegalic. I wonder if that’s how acromegaly starts. Given that it produces no symptoms no one realises, but may be every acromegalic has had high GH for some years and then high IGF-1.

Then I had *the* symptom of a prolactin-producing adenoma: amenorrhoea. And the blood work suddendly showed high IGF-1. So, I was acromegalic all of a sudden, before any symptom related to it developed in me. Then, the surgery. Now, hormone values returned to normal and I am still a spitting image of what I was before surgery. That’s why I don’t post any picture timeline showing how I’ve changed. What I often wonder is if these 11 months of amonorrhoea, 11 months of too high prolactin, have led to the PCOS, because my ovaries were normal a few years ago, and it’s a condition usually diagnosed in your teens, not in your nearly thirties.

Well. I am thankful that my chickpea was a GH+PRL producing adenoma. Had it been less “dangerous” and only GH-producing, I wouldn’t have realised until the growth of my hands and coarsening of my skin had begun, possibly, in 10 years.

Here you go, two pictures, one game: one picture is 6 months before surgery (autumn 2007) and the other one is last month (6 months after surgery), but I’m not telling you which. Can you guess?

I’ve talked to my endo:

• The next GH and IGF-1 will be checked again in 6 months.
• A new MRI can wait until july (one year after the last one).
• The other conditions that kept me going to a lot of doctors in the past weeks and stole a lot of hours of nice sleep (PCOS and an enlarged thyroid gland that is working perfectly) are neither acromegaly related nor deserve any worrying. They will be checked up again in 6 months.

So, that’s it, if nothing else happens, I won’t be visiting any doctor until june. Sounds good, huh?

I’ll keep on reading the emails (click on the sidebar to email me!), I’ll keep on reading updates and posting comments in other acromegaly blogs… and I’ll keep on improving this one, of course! There is still a lot of information I want to post!! So don’t think I’ll disappear… this Magpie is going to be around… while on doctor-holiday.

Happy Holidays

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

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.

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?

BUT

There are a couple of things may be associated with acromegaly and may be not that are keeping me busy this week. Besides the wonderful news about GH, I got more news on monday.

One involves another hormone: cortisol. Apparently, before surgery I was slightly insuline-resistant (I didn’t know that), which could have been caused by acromegaly and the excess of GH. Now that I am healed, everything should have returned to normal, but cortisol (another hormone produced in the pituitary gland) is way too high (for the first time in my life). This could also be related to the on-the-same-day diagnosed polycystic ovary syndrome (PCOS), so it has to be tested. On friday.

The second piece of news involvers another gland: thyroid.  Apparently I have nodules (which is ok, my mother has also) that are growing too fast (which is not ok). Hormones produced in the thyroid gland are ok, but the fast growing could be very bad news or just acromegaly leftovers… Let’s see. That’s gonna be tested as well this week.

So, actually, I went to the endo to see what happened to my first cyst, then adenoma, a.k.a. chickpea, and if it’s gone forever and I found out that my ovaries are full of chickpeas (cysts) and so is my thyroid…

Sigh.

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.

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.

(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.

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.

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!