Topic of the discussion
Posted on 7/24/20 12:00 AM
How are you today?
I thought I would open this discussion so we can talk about body image.
Have you noticed any changes to your body caused by your acromegaly? How do you feel about these changes? How to you cope with it?
Beginning of the discussion - 7/26/20Acromegaly and body image https://www.carenity.us/forum/acromegaly/living-with-acromegaly/acromegaly-and-body-image-2253
Posted on 7/26/20 4:35 PM
Hi my name is Carole and I've just joined ,just curious as my husband has all the traits for acremology and his Pituitary gland is of an abnormal shape but for the past 8 years every test is normal,and apparently the specialist has said come back in 4 years for another test .But these past few weeks I've been checking his blood as I'm a diabetic, and his results have not been under 14.07 highest 20.01 his feet have grown over these past 8 years from an 11 to a 16 he is 6ft 5 and when he was 21 he had such a growth spurt that he had to have surgery on his nose because his bones grew so quickly, he has been admitted to hospital with severe headaches last year and his facial features have changed dramatically .His teeth have fallen out, His dentist cannot fit dentures because his jaw keeps changing and protruding outwards , he snores so loudly we sleep separately, he sleeps visiting friends and family anywhere we go basically. His eyesight is bad , he has hard skin on his face and badly on his hands . His hands are much bigger so is his nose and he has put on about 5 stone over the last six months around his torso , he has fatty lumps around his body and a big lump at the bottom of his back and neck , doctors have said his got crumbling disks and arthritis in his spine , our 2 nieces age 3 and 7 said they dont like visiting because uncle Spencer looks scary and he has scary eyes, which really got him down .as he said kids tell the truth. He is moody and his voice is very loud he has been sweating badly under his armpits and sleeping more, sexually its non existent ,myself and our 3 children are so worried as he said he cannot take much more , he is sick and tired of going to our doctors , being referred and normal diagnosis, Kings hospital said do not send him back , as my husband got angry with the endocrinologist because the specialist was yawning whilst my husband was explaining his symptoms , my husband thought he was very rude , ignorant and unsympathetic. His been living like this 8 years now and some symptoms have become worse over the last 6 months , he is more forgetful and gets a bit confused , he is in a terrible state and we just dont have anywhere to turn to for help , as anyone else experienced this ? Please help any advice would be really appreciated kind regards Mrs Carole Johnston
Posted on 7/26/20 4:38 PM
Sorry my husband is 53
Posted on 8/6/20 2:47 PM
I am going through something similar. I was diagnosed with a pituitary tumor three years ago after so many years having high prolactin levels. In 2018 my IGF-1 was high but my doctor didn’t do anything about it. At that moment I was just complaining of puffy face . Then since last year my body has changed a lot and I absolutely can relate to all what your husband is going through. I have all those symptoms and of course don’t look like myself anymore.
I live in Canada, in small province, but I am trying to get to a hospital in Toronto where there is an amazing team led by Dr Sheeren Ezzat and his wife who is a pathologist. I also talked to an specialist from the States during a webinar, her name is Maria Fleseiru and she said that if I have a pituitary adenoma and those symptoms there is a possibility that I have some sort of silent acromegaly . She explain that sometimes due to genetic characteristics the high levels of GH and IGf -1 are not carry in the blood or doesn’t show in blood test .
So, my advice to you is to look and specialized pituitary center and no just a regular endocrinologist because no all of them understand this condition in deep way.
I am glad I found this site and a case similar to mine, because I have reached out to different groups on the web and I have not been accepted because I am not diagnosed yet.
Posted on 8/6/20 3:15 PM
@SpencerJohnston @Lirio15 Hello Carole and Lirio15, thank you both for sharing your stories with us. We've just published an article that I think you may find helpful, I'll share the link here:
Feel free to take a look and let us know what you think either here or in the comments below the article!
Posted on 8/6/20 7:47 PM
Posted on 8/6/20 9:27 PM
Thank you, Courtney, much appreciate it.
Posted on 10/14/20 10:13 PM
@SpencerJohnston That's awful that the specialist treated you that way! That's unconscionable! I hope you complained to someone because that's really not right. I agree with what Lirio15 said, I'd look into trying to find a center that's knowledgeable in pituitary conditions and definitely get a second opinion. If your husband ticks all the boxes for acromegaly it's hard to think that it's not it. In any case it sounds like he's going through a lot and a doctor needs to take the time to listen to him and get to the bottom of it!
Posted on 11/9/20 9:24 PM
Hi Carole, it sounds like your husband has so many acromegaly symptoms. I had it for 23 years before being diagnosed. Please be persistent and seek out an expert. My feet and hands grew. I had bilateral carpal tunnel syndrome. My face changed, I gained weight, I sweated more and it smelled different. I was heat intolerant and emotionally intolerant (I was irritable☹️). My lower spine was, and still is, very painful. I became diabetic. I had to have a pacemaker implant and half of my thyroid removed. I had previously been extremely healthy and active. Even now that I had surgery 7 years ago I still suffer many leftover symptoms including increasing arthritis in my spine, elbow and both knee joints. It is a difficult disease, most doctor know nothing about it and seem not to care. When you visit a doctor bring a before picture of your husband's face. Again, be persistent. The sooner diagnosed the better. Good luck.