Hello! It’s been a while. I’m not blogging anymore, but that doesn’t mean I am disconnected with the ogtt, regular checkups, etc. world.
For the ones that are still around (thank you!), you’ll probably be happy to hear that my GH levels are low, like normal-person-low, so apparently the surgery was 100% successful😀
If anyone needs help/support/ask questions… I’ll be reading my email again (I actually lost my password! can you believe it!).
Today only a quick post: today it’s my pituitary gland birthday. Its new life started exactly one year ago, when it was “freed” by having surgery and removing the adenoma that was annoying it, and since my pituitary gland has been terribly happy and behaving properly, as a normal one.
More health updates with results and figures within a month or so, I promise!
When googling for acromegaly symptoms at the early stages of my diagnosis, I usually found out that the main symptoms, the ones that take people to the doctors’, are enlargement of hands and feet, nose, jaw, lips and ears.
* 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?
(This is a real holiday post, you’ll see)
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.
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
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…)
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?
Ok, guys, here I am again. I am not posting the GH values today because I don’t have them with me, but I can tell you: everything is all right. I did such a good performance in the OGTT test, that one could have thought I’ve never had acromegaly!! Oh, besides, the running didn’t affect my last results but I’ve learned one should never trust isolated GH values.
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…
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.
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.