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- How does acromegaly impact your daily life?
How does acromegaly impact your daily life?
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@Courtney_J Hi, I had a very late diagnosis, over 20 years, so had a very long list of symptoms. I had surgery 7 years ago with a fantastic doctor. The surgery went well which was wonderful but I am left with many of the after effects of the disease. The biggest impacts are the arthritis and other joint issues in my spine and knee and now my hip. This creates daily pain and stops me from doing many things I love, like walking in the woods or beach, and things I don't love, like cleaning. There is also the body image thing which is very difficult.
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Carolyn and Sofi
Hello everyone. I am new to this forum and am very grateful it exists.
I was diagnosed with acromegaly in March of 2019 by a wonderful neurologist/sleep medicine doctor who was treating my sleep apnea. He happened to ask the right question, "Have your feet grown?". I really don't remember specifically what prompted him to ask that question other than I had my shoes off to get weighed and he had been treating my sleep apnea for several years at that point and noticed I had "grown" in more ways than one. :) I said, "yes, I'd gone from size 7.5 to 8.5 wide in the last year or so." He said, "You have acromegaly". I said, "I have acro-WHAT?". We then went down the list of symptoms....I checked off all of them with a "yes". I was actually relieved to know what I had...because, I had known for some time something was not right. My jaw and bite were off, I was lisping and chewing on my tongue, my teethe no longer showed when I smiled because my jaw had grown and I had an underbite. My blood pressure was high, I was pre-diabetic and I felt exhausted. I was having headaches daily upon waking up. my rings from a year or so before would not longer fit past the tip of my ring finger, All along I kept telling myself...is this aging? because, if this is aging I don't want to grow old.
Thank God my doctor is a curious and observant person!!!
So it went quickly from there... meeting with my GP, blood work to determine GH, to having an MRI within a 2 week period to contacting the Medstar Washington Hospital Center (in DC) Pituitary Clinic....much screening by neurosurgeon, endocrinologist, neuro-ophthalmologist, ENT, etc. I was then scheduled for transsphenoidal resection of pituitary adenoma on June 3, 2019. It was a 1.3 cm macroadenoma with a cyst element as well. Probably was growing for about 5-10 years based on my progressed symptoms. At this moment I understand that 99.9% was removed. However, I am due a follow-up MRI which has been delayed since May due to COVID. I am hoping for no return of the adenoma after review of next MRI.
Here is what I'm left with:
-30+ lbs of weight gain since surgery (1.5 yrs) due to hypothyroid and (probably) depression.
-taking 100 mcg levothyroxin (went from 25 to 75 to 100) since last July.
-continue with blood pressure meds and antidepressants.
-scoliosis of the spine with progressed arthritis.
-prolapsed rectum due to soft tissue growth and familial/genetic factors
-arthritic joint pain in almost all joints especially back, hips , fingers, r. foot and ankle.
-jaw that needs to be broken and reset to bring back natural bite and smile... along with orthodontia
-not to mention feeling like I am no longer the same person I was 9-10 years ago.
I'm just putting it all out there...Because,...
I really want to know if anyone else is suffering from any of these post-surgical acromegaly ongoing symptoms.
Peace and well being,
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@sarahpetermann Thank you for sharing your story and all you've been through! You give me so much hope that I can come back from this!
For a little update, I finally got in to see another doctor because the prior doctor who I'd been seeing for years was reluctant to do the surgery and I'm schedule for surgery next month, assuming COVID doesn't get in the way. I both nervous and excited because after so many years of not seeing results I feel like this could really help.
Take care everyone! 💗
@Weezyslp Hi, I am interested to read you symptoms because when I list mine (there are so many) I often neglect to mention the jaw and tongue symptoms. Also I have voice and speech problems. I can't sing anymore, not even for myself in private it is so bad. I really miss singing along to songs. Can't dance anymore due to worsening arthritis in spine, knees and hip. And WOW thanks for mentioning the rectum issues! I know I have problems down in those private areas but I feel like I don't mention it to docs because there are so many other issues to deal with. Plus it's hard to get them to understand about that acromegaly soft tissue stuff that I stick with dealing with the painful things like arthritis.
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Carolyn and Sofi
Hi, I am so relieved to hear that someone else have experienced issues with their soft tissues and prolapse of the rectum. I mentioned that to my GP and her answers was “ there is no such a thing” it’s unbelievable. At first my abdomen swelled like if I was 6 months pregnant, and then a few days later everything prolapsed .
I see some of you got some test done in a matter of weeks, lucky you for living somewhere else than Canada. Here it takes months to get something done. I have been experiencing headaches and pressure in my forehead for months, and I see my forehead is getting bigger.
I have been waiting to see a neurologist since Sept 2020.
I can relate to all the symptoms everybody mentioned here. Soft tissues issues, awful spine and joints pain, jaw discomfort and spacing in my teeth which affect my speech. Deeper voice, facial changes, body shape changes, chewing on my tongue. Stomach ache, missed periods, weight gain even following a diet, high blood pressure out of the blue. Has anybody experienced pressure and pain in the forehead and scalp?
Despite having a pituitary adenoma and high IGf-1 levels, my endocrinologist says I don’t have acromegaly because my GH is not high.
I feel hopeless , because here in Canada is very difficult to seek second opinions since the health system is very slow, and when you live in a small province even more. I do not know what to do anymore rather that try to remain mentally strong as I can.
For some of you that had gone for surgery, have you seen any improvements in symptoms afterwards ?
Hi I wrote on here as my husband couldn't get a diagnosis even having all the signs for acremology, sadly he was admitted to hospital in November just gone with covid and was diagnosed with diabetes which was a first as every specialist said he never had that, and I knew as im diabetic and was taking his blood tests but he had 3 heartattacks and sadly passed away in hospital leaving me and our 3 children x
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How does acromegaly impact your daily life? Do any of the symptoms make it difficult to complete daily tasks? Have you had to change your schedules or routines or the way you do things? How do you handle it in the day-to-day?
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