Posts tagged ‘Tumor’

Symptoms and me

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?

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January 29, 2009 at 11:47 am 4 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.

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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”.

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

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

pre surgery

My surgery was planned for April 29th. I must say I was rather calm. I wasn’t feeling nervous at all. I knew I was in good hands, the surgeon was the best one in Europe, what should I fear?

Nevertheless, deep inside me, I was very concerned about what would happen after the surgery. My last MRI before surgery showed a 1.5 cm big adenoma, so now it was considered a macroadenoma. I had read everywhere in the internet (internet can be so bad sometimes…) that macroadenomas are more difficult to remove, the number of patients healed descends…

So, on the one hand the magpie is happy, she’s calm, she’s buying furniture for her new nest, so that keeps her busy at home. On the other hand she’s not that happy when she’s at work, and she spends a certain amount of time looking for answers on the web. What would happen after the surgery? from “what if I don’t wake up” until “will my hormone levels return to normal” questions show up all the time. Obviously, the amount of time spent looking for acromegaly, acromegalic, adenoma, pituitary adenoma, surgery hypophysis, etc. in all possible languages increased.

I took the decision not to tell anyone. Only my closest friends in Spain, my boyfriend, my parents and sister knew. No one of my friends in Germany had any idea, I had to tell my boss, sure, but I just said I needed surgery and I would be on sick leave for a while. No further explanation. Why did I make this decision? I don’t know. I guess I was scared of the outcome of the surgery. Not knowing what would happen afterwards was very scary. I couldn’t tell “I need surgery, but don’t worry, everything will be fine” because I didn’t know. I didn’t even know all possible results of the surgery! Anyway, even if it was not the first purpose, not telling most of my people helped to create around me a feeling of “normal life”. Nothing is happening, I behaved as happily as always, I’ve always been a cheerful magpie… If I’d told my circle of friends in Germany, I am sure they would have given me this concerned look whenever I had a headache. And I didn’t need that At All!!

And then the day D came.

June 5, 2008 at 7:36 am Leave a comment


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