Trys wrote, "I am totally familiar with quality of life studies of Acromegaly."

Trys, I doubt there is a doctor on the planet who can claim total familiarity with "quality of life studies of acromegaly". You have only just been diagnosed. You are at the beginning of your journey to treatment. To paraphrase Churchill, you are not at the end, or even at the beginning of the end.

I think it's great that you have shown such stoicism in the face of acromegaly and it's commendable that you refuse to be a victim. Me neither. However, many suffering acromegaly patients do not need to consult books to know their long list of symptoms. They experience them every day, even after treatment. It;s not patients who should need to consult books. It's doctors who need to consult their patients. If they listen, we can tell the medics more about acromegaly than any book.

You wrote that, "The symptom list *before* treatment is the key though to get people through the doctors door to get diagnosed and so get treated." The problem is that many acromegaly patients spend years going through their doctors doors yet still don't get diagnosed or treated.

I spent many years going to see doctors with acromegaly-related symptoms without getting a diagnosis. My GP collated almost 100 pages of notes about me without succeeding in diagnosing me. My story is not unusual. Following the publication of my articles about acromegaly, patients from around the world regularly write to me to say that they went through very similar experiences: years of going through doctors' doors with symptoms that were not recognised as acromegaly.

For this, we paid a high price. High morbidity and decreased life expectancy.

Do you feel we are not telling the truth?

JonDansicg,

You quoted the Quality of Life research as if I was unfamiliar with them, but I am fully up to speed with the published articles as far as I can tell. Sure, I have only been four months diagnosed, but that is a fair bit of time to do a basic literature search and to speak to people. It isn't a cue to belittle me, or make me look small. Of course, you will say that wasn't your intent. I'm not going to win a discussion with you, you're far too good a wordsmith for that, so I'm not going to bother.

I have my own thought on why perhaps why in your case you were not diagnosed despite your visits to the doctor, but I don't feel it's appropriate for me to share them.

I've not written articles, and I've not had anybody write letters to me to thank me. I'm not going to name drop. Does that make my input less valuable? No, it does not.

The key is, as I've just stated is to get people through the doctor's door. For that we need a clear symptom list prior to treatment.

Trys, Jon and everybody else...You all have something to offer to this discussion and all discussions. The text books that some of us have not had access to or the time to research that you offer up Trys is a value, Just as Jons research, experience challenging doctors and debating approach is. However, we all are where we are in this battle... against a disease not with each other whether it be at the beginning in the middle or closer to the end. IT DOESN'T MATTER, everyones input is of value!! It is good that Trystan may be in the beginning, because he is seeing this with fresh eyes can take us back and remind us of things that might benefit others. I applaud anyone who has done the research that both of you have done. While Trystan has just recently diagnosed ..does this make him less worthy to share his insight NO!! Jon, while you have seen more and argued more, it doesn't make you the end all beat all either...Again with the lack of face to face input you did come off as dismissing Trystan (an a few others of us) as not as important or informed as you and as though you are reprimanding a child for stepping out of line.
I (WE) value both of your views regardless as to where you are in this journey... You both came into this group with "guns blazing" and loads of information whether it is statistical or practical experience. YOU BOTH have something to offer (a great deal as a matter of fact)just a different way of presenting. We all have pieces to this puzzle that we are trying to solve...If any of us are put in a defensive state we may be afraid to share that piece and then we are left without a complete solution. So let's for the good of the group, share information and opinions, but PLEASE PLEASE PLEASE let's stop trying to tell people who they are and how they should act...that is not doing any of us any good. We need to share...this is not a competition, but a shared journey.

Hugs to EVERYONE!!

In my view, you are both correct-
To put it into perspective, using my own experience: On numerous occasions, despite my inclination to minimize discomfort, I had informed my MD of the various symptoms: weight gain (despite activity level of moderately good diet), sleep apnea, skin tags, joint pain (for which I had taken over the counter meds)and even a lesser known, heat sensation on my right ankle. He had treated me for 15 years, but missed the more obvious symptoms of my enlarged hands, feet, nose, lips, tongue and gap in my teeth. The problem was that these symptoms were not taken together.

Had I known that there was a connection that would account for them, I would have diagnosed myself. The endcrinologists whom I've been to have a form which lists various endocrine disease symptoms. But generally by the time we are referred to an endocrinologist, we've been diagnosed and its usually a macroadenoma.

The problem, and challenge is shortening the period between noticing a single symptom and getting GH/IGF-1 levels. (Albeit, in Jon's situation, even after he self-diagnosed and had the levels read, he still had to insist that the MD consider the diagnosis). A person at a seminar I attended suggested that we annually screen everybody with MRIs, the way we do mamograms for breast cancer. Of course, that is not feasible. But maybe the endocrinologist's symptom list can be included in the GP's registration form and at annual check ups? I'm not the only person who's said: "If only he asked whether my feet/hands have gotten larger!"
What do you you all think of this idea?

Trena said it all very well. I just want to agree with her and point out that there have been some lively and interesting and animated discussions lately. Those are good things. Not everybody is always going to be on the same page but we are all in the same boat and we do all have some common goals and other times we may have to agree to disagree but we can always do it so that everyone retains dignity.

Hugs,

Rose

I am sorry if my passion for this subject has in any way been misinterpreted. I think its wrong for me to judge Trys or him to judge me. We both have a right to a point of view. I have felt upset at the need to expend so much energy on trying to persuade Trys that acromegaly is a serious condition worthy of recognition. That will stop now because I think I have written everything I can on the subject. Since Trys and I live in the same country, I am hoping we will be able to meet up and learn from each others experiences. Future postings will attempt to be totally non-personal!

Well to close with a comment made by John Ayuk,
Consultant Endocrinologist Department of Medicine, Queen Elizabeth Hospital, Edgbaston, Birmingham, B15 2TH on your article:

"Acromegaly is a rare condition, with an estimated prevalence of around 60 per million and an annual incidence of 3-4 per million[2], so the average general practitioner is unlikely to come across more than one patient with acromegaly on his/her surgery list."

2. Holdaway IM , Rajasoorya C. Epidemiology of acromegaly. Pituitary. 1999;2:29-41.

Trena, I love this statement it applies to so many aspects of life.....I am printing it out..."We need to share...this is not a competition, but a shared journey."

thanks for being our compass...

so glad you two can stop this bickering, this afterall is posting site for regard to an awareness video not slamming ideas at one and another! i will try and get this discussion of here as it is obviously causing more harm than good. which is not what i intended. if you wish to discuss more please create your own discussion to proceed to do it!
wayda go trena and mctrj its a good job rose hasnt been here she would have been cursing about the place bless her i think one ruck for the month is enough. and we have made truce with one another over a mis understanding. if i cant get rid of this discussion then please can you keep it to the awareness video in question. which i have to say is on its 450 mark, and has sent a couple of people talking to thier doctors about acro and what it entails as they have thought for some time that they have acro. i hope they write back to me and let me know how they get on.

Lisa,

I keep on putting my big foot in things. I can't blame it on acromegaly. It's the way I am, and it's something I want to improve on. It's just that I keep on forgetting that I should "act out of love rather than out of truth." (in other words, realising that sometimes thinking I'm right isn't as important as understanding people's feelings).

It wasn't JonDanzig's or my intent to upset you in any way. We can definitely both agree on that! When you get two very strongly minded people on a subject they have a personal passion for then often the results can be quite interesting!

What is absolutely brilliant, and I truly mean this, is the amount of discussion your mini-vid has created. That's absolutely fantastic isn't it?! That's what awareness campaigns thrive on.

What we need now is a film-maker, who's good with words, with media connections to produce a mini film for airing on international television. ;) ;) :)

Trys

lmao!!! do you know jon is a film producer.. i have thought about this idea but its the money side each and every time. such a shame! and of course jon would have so many media connections being a journalist and all.

i know the pituitry foundatiion are in a discussion at the moment about an awareness film, havent i seen you there trys....lol i think we should all think of a line each we would say to someone thinking they might have acro and what to look for then for some one to put it together with music or whatever , and stamp it with acro ds! stomping out the acro monster...lol

Hi Lisa, I hope youre getting over your flu and feeling a lot better today.

I saw your posting above, in which you wrote that Trys and I were bickering. :( I think this wasnt so much bickering as good healthy discussions which have really helped to clear the air. A lot of good have been achieved by them. After all, Trys has been presenting some excellent new ideas and people also seem to have appreciated the comments I made. You only have to look at my Hugbook to see (I was amazed and very heartened):

http://dailystrength.org/people/353820/hugbook

So Id ask you to please reconsider your request to have this discussion closed. It would surely set a dangerous precedent and let censorship creep into the subjects, which would be such a shame. The discussion you started has been brilliant and all the comments made were relevant and helpful. After all, it was not as if any of the comments made were off the subject, they were all important points, and all related to the issue of symptoms and how to spot them in time and therefore the purpose your film.

Also, I would feel and maybe others too reluctant to post again if there was a chance that our comments could be deleted. (Of course, if anyone writes a bad comment that should be deleted, but I have not read any so far).

Anyway, if you think that what Trys and I wrote was bickering, you should see doctors argue when they disagree with each other. It would make our little debate here seem like a very cosy tea party!!

Please keep up your excellent work, Lisa. You are doing a wonderful job in keeping the topics alive and making more and more people aware. Trys is also doing a great job in keeping these subjects at the forefront and promoting the cause in his way.

More strength to you. And to everyone on this forum. I wish I could work out how to send a group hug!

Take care, and a big hug from me.

Jon :)