Acromegaly and Me

September 2011 marks 5 years post surgery

2011-06-13T11:44:00.005-04:00

Haven't posted in a while. Being a mother to 2 children keeps things very busy. Overall, my health has been good. I have been back on my Sandostatin injections every 3 weeks (20mg) right after the birth of my daugther (Aug 2010). My IGF-1 levels have been dropping and returning to normal. Wow, was looking for a picture to post of my family and could only find a christmas picture. I will use this picture taken at Easter of my daughter and I and will update hopefully soon (hehe).

IGF-1 results:

March 2010: 251

April 2010: 210

July 2010: 307

August 2010: 518

Sept 2010: 447

Jan 2011: 275

April 2011: 254

Happy summer and best of health to you!

2010-12-04T19:50:00.003-05:00

Me with my kids. Time flies with 2. Sydney is great. We have lot of fun together. She is going to be 4 months on December 19th. Devon just adores his sister. He is a great big brother and loves to help.

I did receive results of my last IGF-1 tests: August was a reading of: 518 and September was: 447. I was just at the Lab this week for another IGF-1 blood test to see if my levels are going down? They are still quite high for me. Pre pregnancy, my levels were in normal range, around the 200. I'm also scheduled for my MRI on Tuesday December 7th. I'm looking forward to the results. I'm still experiencing certain symptoms and hope that it will be rectified once my levels are stablized. Once I get my latest IGF-1 results and the results of the MRI, I will be scheduling an appointment with the Endocronologist in Montreal to discuss maybe increasing my Sando for a while until I'm back on track.

The holidays are fast approaching. May you all have a wonderful Christmas with your loved ones.

Private Nursing Services Arranged...YIPEE

2010-09-27T20:15:00.003-04:00

Great news, within only 2 weeks of filling out the Enrollment Forms, I was set up with a wonderful Nurse who comes to my home to give me my Sandostatin injections...all FREE of charge thanks to Access Sandostatin. The program also involves follow-up phone calls, assessments and replacement drugs if the nurse should happen to damage the vial.
Another great thing about this program is I will have the pleasure of having the same nurse administer my Sando. These nurses have had intense training on properly administering the drug.
I, along with my family, are so thankful for this wonderful service. I've been spreading the news...local pharmacy, family doctor ....

Julie

Access Sandostatin LAR ~ FREE program for Acromegalics

2010-09-07T08:13:00.005-04:00

I am pleased to write that after a stressful search for a nurse to administer my Sandostatin injections, my Endocronologist shared with me (which she herself just find out about this program) that the company who makes the drug supplies FREE nursing services all across Canada!!!!

I called and inquired and shared my story. The representative was very warm and understanding and very efficient on the phone. She explained that my physician needs to fill out the enrollment forms and I should hear back from them immediately. I called my Endo's office (once again it is the patient who does all the leg work), gave the great news to her secretary, and explained that the doctor must request access to the program and fill-out paperwork. I will give it a good 2 to 3 weeks for both my Endo and Novartis to get back to me. If I do not hear back from either of them, I will call my Endo's office. The patient must always be on top of things.

Access Sandostatin LAR Program
1-866-281-4688
*This program provides free nursing and financial services for individuals who use the medication Sandostatin. For example a person diagnosed with Acromegaly.

Now a family of 4

2010-08-24T07:08:00.008-04:00

Sydney was born on Thursday August 19th, 2010 at 8:34pm. She is very healthy and a great baby. We are all happy to be home and enjoying our time as a family of 4. Labour was intense and now I am in the process of healing and have an appointement today to receive my Sandostatin injection (yipee). I am anxious to get the benefits and start feeling better. As I mentioned in my last post, I was experiencing Acro symptoms -snoring, sore jaw, bizarre sensations in my head and trouble sleeping just to mention a few. However, with pregnancy, my symptoms were 10x worse. As a result, I am bottle feeding and cannot breastfeed. Mom needs to be at her best to care for her children!

I have asked my family doctor to administer my injection as I am still in the process of seeking a private nurse. My Insurance Company has sent me the paper work for my Endo to fill-out. After speaking to a representative from my Insurance Company, my chances of being accepted are good. In the meantime, I hope to have my family doctor keep administering until this is all sorted out. Kinda sad when the patient is the one who has to be her best advocate.

All the best,

Julie

38 weeks pregnant

2010-08-06T13:03:00.008-04:00

Been experiencing contractions but not often enough to head down to the hospital. I am still vomiting and am now feeling more Acro symptoms ie. swollen eye lids, bizarre sensation in my head just to name a few as other symptoms are also related to the pregnancy ie. swollen lips, hands, feet...just lovely hehe.

Results of IGF-1 during pregnancy:

Mar 3rd/2010- 251 ug/l & GH results 1.66

Apr 19th/2010- 210 ug/l

Jul 5th/2010- 307 ug/l

Augt 5th/2010- pending

As a result of my IGF-1 going up it was decided that I will resume my Sandostatin treatment every 3weeks starting mid-september and not wait for the August 5th bloodtest as it takes 1 month for results. I will at least have a few weeks to breastfeed. My husband and I are really ok with the decision as I do not want to fall sick again because I need all my strength to care of our newborn.

I also was told that I am no longer able to use our local clinic to receive my injections. It is no longer in their mandate to offer clients with intramuscular injections that service (I am very very disappointed with that news). They want a family member/friend to inject me (totally out of the question!) or that I pay for a private nurse in that case I can use the clinic. I am in the midst of trying to find the best possible option for me and hopefully the service will be covered by my insurance company. I will keep you posted both with the birth of our daughter and my search for a nurse.

All the best,

Julie

5 Months Pregnant

2010-04-04T18:43:00.002-04:00

5 months pregnant and counting. I have been quite ill throughout and am now off work until the delivery of our daughter in mid-August. I still wake up and cannot believe that I am still pregnant. I just can't wait to see her.

I'm being followed quite closely with both my Obstetrician and my Endocronologist. They both have been very attentive to my pregnancy and the fact that I have Acromegaly.

Happy Easter,

Julie

January 25th, 2010 ~10 weeks and 4 days pregnant and counting...

2010-01-25T20:20:00.008-05:00

On December 17th, 2009, I found out that I was pregnant. Could it be true after 6 miscarriages in 5 years??? Well, it was confirmed with a blood test. I knew that I had to stop my Sandostatin and Diovan ASAP and call my Endocronologist.

Here I am today, full of nausea, fatigue and Acro symptoms already. My eye lids are slowly swelling, my nose is enlarging and my jaw and joints crack daily. It is all worth it though. The residual tumour will be monitored by Visual Field testing at the Optomotrist (No MRI for me) and lots of bloodwork. The baby is fine at this time. I had an early Ultrasound and the heart was beating and everything else was were it was suppose to be. My next Ultrasound is on Feb 10th.

My husband and I are still cautious but really hope that I carry through my 9 months!!!

IGF-1 results from March 30th, 2009

2009-08-22T21:00:00.011-04:00

Ok, you are probably wondering...why this picture??? I will explain in a minute. First things first. My IGF-1 results since the beginning of 2009:

March 10th, 2009- 307 ug/l

March 30th, 2009- 254 ug/l

As you can read, my levels are better since I started receiving my Sando every 3 weeks and I do feel better since the new treatment plan which began in January 2009.

On another note, I have not been feeling well for quite some time with the following symptoms: extreme fatigue in late afternoon, swelling of both legs/feet, extreme redness on my face; arms and knees, blurred vision, difficulties concentrating and shortness of breath. All of the above started about 3 months ago. Boy, did it ever effect my work. I visited my Endo in Montreal thinking it was Acro related and was told it was probably nothing... Here we go again. Well, I also visited my family doctor "often" with the abovementioned symptoms and finally, he told me to show up at his office as soon as the symptoms appeared. Well, the next couple of days I was right back in his office. He looked me over and explained that he was not sure what to make of it thus asking me to return for an appointment so we could discuss bloodwork. I was sent for another IGF-1 test and Cortisol test- I am still waiting for results. However, on that same day, I also stopped taking my Adalat blood pressure medication to see if that was the cause. Well, 2 days later I had no symptoms and when a week went by and I returned for a follow up appointment we realized that I had severe reactions from that medication. In the end, I was relieved it was not Acro related but am still looking forward to my IGF-1 results which I should get back in 2 weeks. It takes 5 weeks for the results as it is a special test. I am back taking Diovan to control my BP levels. I had stopped since we were trying to conceive (without any luck though). Anyways, Diovan is the best med so far for me without any side effect.

Now, the reason behind (ha ha) my picture is to also share that I experienced something a little traumatic during my previous Sandostatin injection appointment last month. The injection was not given in the right area. I tried my best to give accurate arrows of my experience with the picture. Basically, it was given WAY TOO close to my spinal cord. Let me tell you, did I ever scream when being injected. I was shocked to say the least. I turned around to look at the nurse who then began to cry. I immediately told her that that is not the area for my injection (very politely). She did not know what to say but as I was returning to a "less" shocking state, I realised that she realised her mistake. I consoled her (yes, I consoled her) and left the clinic to talk to the secretary to explain in short what happen and to take care of the nurse. A day later, my foot was numb and I had the weirdess sensations. When I returned to the clinic 3 weeks later, I asked to speak with the Manager and explained my concerns (by the way, no one called me to check up on me). I wanted to make sure that this does not happen again. I wanted a clearer explanation of proper procedures when errors are made. I did not want the system to blame the nurse but to correct their methods if such a mistake is made. On that day, we found a smaller less invasive needle. I also got a crash course from my family doctor who showed me where the needle goes and to speak up if I feel they are about to inject in the wrong spot (in hindsight right). I truly feel that I will have to write a letter to the the head of the company (which I have neglected to do yet) to ensure it never happens again. I'm told that any needle given in that area so close to the spinal cord is dangerous...I knew that already.

I truly hope everyone is keeping well. All I know is that I still have to be a strong advocate for me and it has been 3 years post-op. Boy it can be exhausting. However, when you know there is something just not right don't just give in to the medical gods. They are human after all.

Health and happiness,

Julie

IGF-1 test results

2009-04-05T12:54:00.003-04:00

Update:
January 28th, 2009 I had my first 3 week 20mg Sando injection.

January 29th, 2009 visit with the High Risk pregnancy team in Ottawa, Ontario to discuss reasons behind my many miscarriages. As my blood pressure is very high, they wanted me back on meds to control it. I had lots of bloodwork done and a 24hr Urine test... all results returned normal. My BP was on average 160/101. I was on Labelatol 200mg 3pills a day for a while but I had to stop taking those meds b/c of too many side effects. After several doctor visits, I am now ok with Adalat XL 60 mg once a day and 1/2 tablet of Hydrochlorothiazide at 25mg.

March 10th, 2009 IGF-1 blood test in Montreal.

March 30th, 2009 returned to Montreal for my 2nd IGF-1 blood test. During that appointment, the nurse informed me that my results from March 10th were in. My IGF-1 dropped to 305 as compared to my IGF-1 results in November 2008 which was 352. So, these results show that indeed receiving my Sando every 3weeks instead of every 4weeks is dropping my GH levels. I also feel better since I started my 3 week injections. I don't feel Acro symptoms like I did when I was getting my 4 week Sando. I would feel Acro symptoms after 2-3 weeks of receiving my injection. What I find also helps me (today) is that my BP levels are ok (129/85) but my doc still wants it to be lower.

My next visit in Montreal is May 19th, 2009. I should get my 2nd IGF-1 results on that day. I hope that it dropped even more. The normal for my age/gender is between (100-320).

Happy Spring!

2008- Updates

2009-01-14T18:19:00.005-05:00

Another Christmas has gone by. What a year it has been. My son will be 6 in September and my husband and I are amazed at how time flies. Now, back to my Acromegaly. Overall, I have been feeling better but I am still experiencing episodes were I swell and feel terrible. I have been monitoring the weeks when I do not feel great and it always ends up the week and sometimes two weeks before I am due for my Sandostatin injection. I have been sharing my concerns with my medical team and finally after my IGF-1 test was taken in November 2008 the results show that my GH levels are slightly high (352). Instead of receiving my Sando injection (20mg) every 4 weeks, I will start receiving them every 3 weeks at the same dose to see if there is a decrease in my GH levels. My new treatment plan should commence end of January 2009. I can't wait!!!

2007 - One year after my pituitary surgery

2008-12-20T19:35:00.005-05:00

(Picture taken Christmas 2007)
I was 2 months pregnant and miscarried on Christmas Eve 2007. To date (Dec 2008), I have had four miscarriages. I am visiting the High Risk clinic in Ottawa, Ontario Canada inthe new year to understand the reasons for my miscarriages.

I am back taking my Sando once a month. When I was pregnant I had to stop my medication. Because there is not much research on the long term effects of Sandostatin and pregnancy, it is recommended by my Specialist Dr. Serri from Montreal, Quebec Canada that I stop taking my meds. I was being monitored very closely to ensure that my growth hormone would not spike and that my residual tumor would not grow. All in all, our spirits are good. We will just see what happens next.

2006- Post surgery

2008-12-16T21:00:00.003-05:00

(Picture was taken one week after my pituitary surgery) I was so anxious to be home to celebrate my son's 3rd b-day.

I started noticing subtle changes...my face and my tongue felt less swollen, my acne cleared completely and my snoring ceased immediately. Although, my nose stayed quite large for a couple of weeks because of the nasal packing. Upon my return home I noticed clear fluid leaking from my nose. I had to be rushed back to Toronto the following day to ensure that I did not have spinal leakage. After 1 full night and no other episodes of leaking, I discharged myself and returned home. (what a nightmare)

2006- Finally a diagnosis

2008-12-15T20:59:00.001-05:00

June 2006 - My Family Doctor finally sent me for GH test (it was such a guessing game) and we found very high levels of Growth Hormone and as a result had an MRI that showed a pituitary macroadenoma (3cm). Had surgery in September 2006 at Sunnybrook Hospital in Toronto, Ontario (Canada) with Dr. Michael Schwartz-Neurosurgeon. Small amounts of tumor remains and my Growth Hormone still active. Am required to take Sandostatin, a monthly injection for life, that helps control my growth hormone.

My husband and I think that I had Acromegaly for a good 10 years prior to my diagnosis. I had all the classic symptoms.

2005- The beginning of my health issues

2008-12-14T22:15:00.003-05:00

2005 – Picture taken in February. Symptoms continuing to worsen.

The following is a list of my symptoms (which are classic symptoms of Acromegaly) that I was dealing with and had no idea that the culprit was a pituitary tumor.

*I had surgery for carpal tunnel on my left hand first because I still needed my predominent hand as my son was not walking at that time. The numbness and burning were so severe that it kept me up most nights. Washing my hair was a nightmare.

*I had surgery to remove a cyst that was growing underneath my lower lip.

*I had facial swelling like my nose, my eye lids and my lower lip.

*I had many skin tags on my chest and stomach.

*I had terrible pain in my jaw. It cracked alot.

*I had difficulty speaking because my tongue was very thick and had difficulty pronouncing certain words. I would share with my husband that I did not know were to place my tongue in my mouth. It was always in the way (such a strange feeling).

*I was extremely tired and felt horrible.

*My eyesight was blurry and I was constantly cleaning my glasses thinking they were dirty.

*I had insomnia and my husband complained of my snoring.

*I was constantly sweating.

*But my most terrifying feeling was that I did not feel like myself. I could not find the right words to express this to my closest family and friends. It was only when we discovered I had Acromegaly that everyting made sense. I visited many physicians and other health professionals with the above mentioned symptoms before I was diagnosed with Acromegaly [for which was the cause for all my ailments].

Here is a list of Health Professionals I visited before my diagnosis: Dermatologists (acne and skin tags), Massage Therapist & Surgeon (carpal tunnel), Chiropractor (carpal tunnel), Dentist (soreness/pain in my mouth), Ear/Nose/Mouth specialist (cyst), Walk-In clinics (thinking I had severe allergies) and my family doctor, which I visited very often sometimes twice a month for a good 2 years (feeling terrible, insomnia, constantly sick with lung infections).

Noticeable changes in a short time period

2008-12-14T19:19:00.000-05:00

It was only after I was diagnosed with Acromegaly that my husband and I went through our family pictures and noticed the subtle changes in my facial features over the years (actually months).

I did feel a change in myself but I chalked it up to being a new mom.

2004- The beginning of my health issues

2008-12-13T22:20:00.000-05:00

2004 – Same symptoms getting worse. Hair suddenly changed, went from straight and healthy to curly, thick and unmanageable. Noticeable changes in face and overall appearance. Increased shoe size. Very tired. Started thinking there was a problem. Expressed many times to my family that I did not feel like myself. I felt unbalanced and swollen.

2004- The beginning of my health issues

2008-12-12T22:26:00.000-05:00

Rash-like acne across the forehead, side of my face and chest. I was prescribed Acutane in 2001. I also had swollen hands and feet, small hump behind the neck and constantly had excessive sweating. I also exercised daily.

2002 -The beginning of my health issues

2008-12-11T22:30:00.000-05:00

In my early 20’s (mid 90’s) I had stomach and intestinal problems. My symptoms consisted of regular vomiting and many episodes of diarrhea. I had surgery in December 1997 to remove a small part of my intestine. I was told I had diverticulitis, my surgeon said my intestines looked like one of a 60 year old. This was just the beginning of my health issues.