Home

MaryO: Growth Hormone Issues

Leave a comment

Wednesday, October 25, 2017, 11:08 PM on Facebook

Me: My $450 monthly co-pay refrigerated medication was overnighted to me yesterday, arrived a couple miles from my house at 7:05 this morning. UPS couldn’t get it to me today so they’ll “deliver it tomorrow between 12:30-4:00”.  If that ice is melted, the medication is ruined. I see angry phone calls tomorrow.

 

Friend 1: My Specialty pharmacy replaces it free of charge if that happens. Or at least that’s what they tell me will happen. I asked because our UPS driver is terrible.

 

Me: We’re on the phone with the pharmacy right now.

 

Friend 2: OMG, you have one of those copays too?
😡 (Part D? So you have the same donut hole joy we do in Jan/Feb?)
I hope the pharmacy replaces/handles it. “At least” it’s tracked, so clearly documented as being en route for too many hours.

 

Me: Yup. People not on Medicare can get this close to free.
🙁
Still on the phone.
🙁 I hate this, ummm, stuff.

 

Friend 2: Ditto. The drug companies can give it for $25/copay with private insurance, and some f’d up anti-kickback statute prevents them from doing the same for anyone on federal insurance, including Medicare, even when it’s under patent or otherwise has no generic (which is the point of the damn statute). 😡

The drug companies HAD (in our case, until this year) worked around it by funding independent patient copay programs to avoid the bad PR/increased regulation risks from being like Gleevec a decade ago (let’s bankrupt the cancer patients for whom this works and keeps them in remission indefinitely!), but at least with the myeloma oral chemos they’ve pulled their funding and the copay assistance programs have shut down, AND they’re raising the prices 20% (in the US, not countries that can legally, oh, bargain with pharm companies) to cover other drug failures. (I’m sure they’re hardly turning any profit at all, though, and the combined actions are totally 100% necessary. And I’m someone who *wants them* to turn a good profit so they’re incentivized, but come on. It’s absurd that the $$$ drugs that are a quick sub-q injections in an office building is fully covered by Part B and supplemental, whereas the “patient convenient” pills cost one $13k or so annually in copays.

 

Friend 2: But aside from my thread jacking rant (😳), I really hope you’re a) not entirely out right now, and b) it’s resolved at no additional cost to you or having to stay home again all day to sign for delivery.
😞

Me: We’re still on the phone
🙁 This is the 4th person.
This person on the phone can’t guarantee that it will be still cold but is hesitant to send another shipment at no cost

Friend 2:
🙄 Will they send at no cost if it arrives ruined? Like, you can have a time stamped photo and video of melted ice, and the tracking info with a delivery time stamp?
😕
It should really come out of their insurance or likely-contract with UPS.

Me: Don’t know yet but they’ve added a 5th person on the line. This can’t be the first time UPS messed up a temperature-sensitive medicine.
Now they’re going to call back in the morning. (HAHA)
🤣

Friend 2: I *constantly* want an eyeroll reaction button on FB. Good luck, and as long as you don’t run out before it comes I do have faith that you’ll end up not-screwed! (It’s just going to cost you time and frustration vs a second $450.)

 

Me: Still on the phone. This is nuts. I have 1 more cartridge (about 15 days worth)

Friend 2:
👍🏽 to enough on-hand,
🙄
🙄
🙄 to the phone mess?

Me: Phone call is over, nothing resolved. 5 reps, a couple robots and background music.To be continued in the morning…

 

Friend 3: I had that happen but it would have made it 3 days. I told them the cost and how long it could be in shipping. If they were to do as planned, it would be on them. They got a courier and I got it that night.

 

Friend 4: I would report it to whom ever you get the medication from . When I was getting a refrigerated medication they would never send them to arrive on a Sat.or around the holidays. They always made sure I got it next day Shipment !

 

Me: Mine is marked “next day” and they ship it by UPS Next Day Air Saver®

 

Me: I guess they saved the money but the Next Day got lost somewhere.

 

Friend 5: UPS explained to me that when the package is labeled “Air Saver” UPS can deliver the package anytime that day. If the package is labeled just Next Day Air, they have to deliver it in the morning. The problem is that the RXplan won’t pay the additional amount required by omitting the air saver.

 

Friend 6: Praying you get this mess resolved!!!

 

Me: Thanks!

Friend 7: This is what shipping insurance is for; it’s between the pharmacy and the shipper. ETA: only stable up to 24 hrs at room temp.

 

Me: Mine is only supposed to be between 2° to 8°C (36° to 46°F)

Friend 7: and starts losing potency quickly if not. Me: I know
🙁

 

Friend 5: Mary, I had the same problem on a day Texas temperature was 104 degrees. UPS delivered my GH the correct day but after 7 pm. The medication was warm when it arrived. My specialty pharmacy gave me a hard time about it. I phoned the manufacturer and talked to a nurse on the support team who said the med needed to be replaced and to have the pharmacy contact her if needed. I called the pharmacy and argued with the pharmacist for 15 minutes. I asked him if he wanted to be responsible for my taking a medication that wasn’t safe. He finally agreed to replace it. The box with my med was only half covered by the cold packs, and the tracker didn’t show damage, so the pharmacy argued about replacement. I responded with the fact that those trackers are not always accurate. They can and do fail. If he had continued to argue, I would have insisted he talk to the nurse with whom I spoke.I called my insurance plan and complained about the pharmacy. If you call the manufacturer of your med, be sure to get the name of your contact there. Good luck. I’m sorry you have that hassle.

Friend 8: So sorry!! Hope it gets to you in good, COLD condition. What an aggravation for you.

 

Friend 9: Refuse it… they replace it

 

Me: This doesn’t require a signature so they usually just drop it and run. Luckily, we have a dog who will sound the alarm.

 

Friend 9: Oh and Ask for fedex delivery all of the time

 

Me: 4:31 PM. The “window” today was 12-4:30. It’s still not here and back on the phone.

 

Me: I forget to mention that it’s going to take 8 days to track this package. Egads!

 

Me: I had to leave. Tom sent me a text “Donna from last night Called at 5pm I told her we were now considering replacing Humana.They are declaring the package lost and sending a replacement shipment immediately.It will arrive by 10:30 am Friday”. We’ll see! Several hours of phone calls and 15 people on their side. Aarrgghh

 

Friend 2: I will say that FedEx has been really consistent with ours (which ironically would basically be fine if lost for a few days, aside from extreme temperature ranges), though the whole designated “morning” and “afternoon” windows are a joke. (“Afternoon” has come before 8 am, “morning” at 3:30pm…but always the correct day! Just irritating since it’s so regulated – next-gen thalidomide, all those birth defects – it *has* to be signed for.) In case they’ll let you request FedEx after this.
🙄

 

Me: Today’s meds are coming UPS again but it shows as “Out for Delivery” today. Then, again, it said that on Wednesday, too. The difference is today has to be signed for and it’s supposed to be here by 10:30 so I can take my mom to a birthday lunch.
1 hour, 15 minutes and counting…

 

Me: Success!

Ren, Undiagnosed Bio

6 Comments

 

Hi there. 27 year old female, never had kids. It’s been an awfully long couple years and I’ve been researching and reading all you lovely people’s bios on pituitary tumours, Cushing’s disease and Acromegaly for about that long.

My symptoms onset at a time where my lifestyle was out of control. I was drinking heavily, using drugs and didn’t have a care in the world. Or so I thought. At the time of my heaviest use (cocaine) I started having strange laundry list of symptoms.

Pressure headaches
Pain in my abdomen
Acid Reflux
Excess hair growth (abdominal, face)
Purple stretch marks on my abdomen
Weight gain of approximately 30lbs in a month (distributed in only my trunk/abdomen)
Swelling of arms, face (around eyes too) sore jaw, enlarged tongue (ridges on the sides, from my teeth)
Swelling of hands, feet & legs (increased foot size from size 7 to 8)
Exhaustion
Hair loss on scalp
Itchy, sensitive skin that looks very thin (see-through almost, blue veins very prominent all over body) skin redness as well, large pores. Dull eyes.
Fatty deposit on the back of my neck
Collar bones no longer visible
Diagnosed with anxiety, bipolar disorder and ADHD
Memory loss, brain fog
Irregular menstrual cycles and increased pain
Tunnel vision at times and blurred vision. Sensitivity to sunlight.

At the time, I was so messed up my perception of reality was pretty skewed. The combination of my lifestyle and all the symptoms mentioned above motivated me to get clean (a year and a half so far woohoo!) I knew something was wrong and I needed to figure out my baseline without substance abuse to get to the bottom of it. At my lowest point I met up with my parents who I hadn’t seen in a month and they commented on how different I looked. One of my friends from narcotics anonymous hooked me up with a great physician as I didn’t have a family doctor. I was determined to get to the bottom of all this.

When meeting with my new family doctor (after getting sober) all of the focus was put onto my recovery and mental health. Seeing as she didn’t know me beforehand she didn’t know the petite, energetic person I used to be. I voiced my concern about my physical changes as well as my mental ones. I was referred to a psychologist. Diagnosed with bipolar disorder, depression and anxiety and prescribed meds for all of the above. The interesting thing is I didn’t have these problems before the physical symptoms onset. This was followed by countless ER visits for panic attacks, being dismissed countless times for strange physical symptoms that every medical professional attributed to my history of drug use and mental health. I believed them at the time. I was also diagnosed with TMJ disfunction and started seeing a chiropractor and massage therapist with no improvement.

The year that followed was the most challenging of my life. I thought I was going crazy. I tried eating an extremely healthy dairy free, wheat free, exercising constantly with no change. Seeing various doctors, explaining my symptoms only to get basic bloodwork done and sent on my way. It wasn’t until I decided to get off my psychiatric meds and focus on finding a diagnosis for my physical ailments that things started to change. I visited the ER and the doctor on call actually listened, he referred me to a rapid assessment internist. To date I have had a thyroid panel, hormone panel, all basic bloodwork, thyroid ultrasound, abdominal and pelvic ultrasound, cortisol 8am test, 24 hour urinary cortisol- all came back within normal range. I have been tested for angioedema, (neg) referred to an allergist, dermatologist and endocrinologist.

When I saw the endocrinologist he basically said “I see people with your symptoms all the time and there is never a diagnosis, so you’ll probably have to live with this” I was instantly worried and heartbroken with that response. He ordered some tests, ACTH, another 24 hour urine, T3 T4, DHEA-SO4. I’m waiting on these results now. Saw my internist again after the endocrinologist as he also ordered a prolactin and ACTH test which I hadn’t obtained the results from yet. ACTH was slightly elevated as well as prolactin. (High) not by very much. He ordered a CT scan of my head which I have to wait a month for (he said possible hyper prolactinoma of the pituitary). I’ve asked to have my growth hormone (IGF-1) levels checked, endo says “nope you don’t have Acromegaly”

I am trying to stay strong but I’m on the verge of losing home based my business as I’m a hairstylist and am starting to develop tremors in my hands, I can barely get up in the morning, I feel as though no one understands what I’m going through. I have a sense of urgency within me to find a diagnosis, my body is screaming at me that something is very wrong. My symptoms above increase in severity by the day. Have any of you diagnosed with Cushings out there experienced only slightly elevated ACTH results or prolatcin? I was also curious if anyone has an enlarged/ swollen tongue as a form an ACTH secreting tumour, I’ve tried to find information on it but only points to an acromegalic symptom. Something inside of me is telling me this is either pituitary or adrenal related. I can’t help but wonder if my drug use somehow stimulated my pituitary.

My personal life is non existent, I have isolated myself from my friends who no longer reach out or accept me (even though I have attempted to confide in them). I feel as though everyone but my family thinks I’m completely out to lunch. Just want to thank everyone on this site for sharing their stories, when I’m feeling hopeless and at a dead end, reading your bios are the only thing that is keeping me going and pushing for a diagnosis!

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

MaryO – Giving Thanks for Naps

Leave a comment

Adapted from this post: http://www.maryo.co/giving-thanks-day-6-october-23-2017/

 

 

Today I am thankful for naps, even longer than those on the chart above.  Ever since my Cushing’s days in the early 1980’s, I’ve needed long daily naps – like 3 hours each – to get through the day.

My endo says I’d have more energy if I took more Cortef, but when I do, I gain more weight.  Of course, I *might” have more energy to work off the weight.

<sigh>

So, I nap and I’m very thankful that I can arrange my life to accommodate my long naps.

I’m also thankful that

 

 

 

 

Courtnay P (Courtnay), Undiagnosed Bio

Leave a comment

 

Hi

I think I have Cushing disease

Caused by a pituitary tumor

Though i’vs asked,

My doctors have not yet given me an MRI

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Cathy T, Pituitary Bio

Leave a comment

 

Hi! My name is Cathy Tia. I’m 27 yrs old and was diagnosed with Cushing’s disease 6 yrs ago while doing my first year of an education degree. I had worked in the fitness industry at that stage for 5 years and was fit and healthy but as soon as I started to fall asleep at the wheel driving into varity. I thought something was wrong symptoms persisted and weight gain fatigue, sweats, acne no periods. The list goes on, started to get out of control.

I went to a endo and she did some tests on my bloods and was shocked that my cortisol levels were in the thousands then we did some 24hr urine tests and they were as high as 3000. After nothing showed up on the MRI scan we did the petrosal sampling and it showed the source from coming from my pituitary gland so I then went to hospital for them to have a look at my pituitary gland they saw no visible tumour and that was that I then was put on a course of drugs as I kept going into adrenal failure where my cortisol levels were as low as minus 10 so no wonder I was in agony and feeling like I was going mentally insane. My weight dropped to 48kgs at the time of low cortisol, then my body changed again weighing in at 70’ish kgs.

I started to get heart palpitations and was exercising so much I nearly dropped dead but nothing I did seemed to help the weigh loss. My cortisol was tested again and again it was high, I went on a block regime to mimic what it would be like to have no adrenals before the trauma of the surgery well as I expected they didn’t bring down the cortisol in fact it increased. I went off all drugs as they made me feel so sick and I couldn’t even hold a job because of no energy etc.

Now 2 yrs later it is back with a vengeance and again there was talk of removing my adrenal glands but I refuse as the pills didn’t work so why would the surgery again? I said I would try the drugs. I have been on them 4 months and my levels which are meant to decrease have gone from 284 this week to 1225. My endo is at her wits end I’m going back to the hospital on Wed but I feel there is no light at the end of the tunnel as I feel we have exhausted all my options.

I’m newly married only 9 months ago I have the most supportive wonderful husband but feel bad for him as we can’t conceive and do normal things young married couple do as I’m always tired and hate going anywhere because of my appearance. If anyone has any answers out there or just words of support I would love to hear from you.

cheers, Cathy ‘mad’ Tia ( at least I feel mad)!!!!!!!!!!

Update Monday June 30, 2003:

Hi. Well, I have had more tests and yes they confirm that my Cushing’s disease is pituitary based, I had an MRI scan last night so we will wait and see if there is any visible change from the one I had done 4 years ago, then from there surgery.

I am gaining more weight and my skin is full of acne even though I’m on an antibiotic and the pill to help it, My periods have stopped even though I’m on the pill and the hair on my face and body is really embarrassing. I have totally lost confidence in myself and any situation I feel is stressful even paying the bills is an effort.

My diet is still very strict only protein and I try and walk and do weights everyday but I feel I’m losing the battle. I hate the waiting for results I just want them to hurry up so I know what my options are start them and get on with life!!!!!!

Frustrated Cathy ‘mad’ Tia (at least I feel mad).

Update Wednesday July 9, 2003:

As you all know I went for an MRI scan last Monday and the Monday just gone I recieved the news I had a 7mm tumour on the left side of my pituitary gland which means removal of that left side, I’m relieved after 6 years of cyclical Cushing’s there is something to show for it at the same time I’m terrified not only about the surgery but all the after effects the drugs the quality of life after this terrible disease!!!!!,

My husband and I are have amazing faith and support from family and friends but it is still such a roller coaster ride we are only 27 years old and have been married for 10 months we don’t know if we will ever have children which is so important for us. We don’t know where life will take us but we do and have accepted this is for a reason god works in mysterious ways so please keep us in your thoughts and prayers as we do for all you fellow Cushing’s patients out there what ever the stage of disease you are at, never ever give up be strong.

cheers, Cathy Tia from little old New Zealand.

Update August 3, 2003:

Hi everyone well it is now the 3rd of August 2003 and I am going to the hospital on Tuesday here in little old New Zealand, to have a meeting with the brain surgeon to go through the procedure. They have found a pit tumor on the left side of my gland and need to remove the whole side. Wow, pretty scary but at least I’ll feel better after 6 yrs of not such great health.

I’m excited about my future and hopefully my husband and I can start our lifes together with children in the future, I’ll write on Tuesday night to tell of my surgery date, if I get one.

Keep the faith, everyone. There is always hope we are the strong ones what doesn’t kill us makes us stronger! Feel free to email me on cathyscurves@hotmail.com.

Update August 22, 2003:

Hi everyone well I haven’t written in a while as you know the hospital systems are slow at getting things moving. As you know a tumour was found on the last MRI but now they think there is more to it so Monday 24th August, tomorrow, I’m going for another CT scan then surgery although I don’t have a date for surgery. I’m hoping it will be in the next month because I want to be out of hospital to share my 1st year wedding anniversary with my wonderful husband my angel here on earth at home not in hospital. I’ll keep you all updated this week for the next chapter.

Hang in there everyone. Remember, if we all stick together and send love through our thoughts we will beat this thing!!! please email me anyone if you want to talk I know I’m down here in little old New Zealand but don’t hesitate.

Update September 15, 2003:

Hi everyone it’s Cathy here agin from little old New Zeland, I finally have a surgery date it is on the 15th of October one month away it’s been a long wait but now I know the date I can plan my life!!!! I should be fighting fit for xmas day that was my goal so My husband and I can plan a holiday a family and get back into full time work. I’m so excited.

Hang in there everyone and please send your prayers and happy vibes my way on the 15th
cheers Cathy ‘mad’ Tia

Update October 10, 2003:

Hi everyone. Well, only 4 more sleeps to go until my 2nd pit surgery. Let’s hope they get the bugger this time. I’ll update you all as soon as I can focus on the computer screen
cheers Cathy

Update October 27, 2003:

Hi everyone! Well, it’s 2 weeks tomorrow post op. I’ve been home 1 week and recovering well, things went to plan as you all know the discomfort only last 3-4 days and my cortisol is dropping which is so positive. We will know for sure in a month. I’m hoping it comes down and stays down so we know I’ve been cured. I’ve already lost 2kg’s and the high colour in my face has gone down my joints are not as sore and my acne is clearing up. I can’t believe in 2 weeks. I’m already looking better. I ask you all to keep praying and sending happy healthy thoughts and vibes my way as you all know this is just the beginning as it is such a reecurrent disease. I really want to avoid having my adrenals out which they will do asap if my cortisol doesn’t stay down. They say this is the only way for sure to cure Cushing’s disease.

But I send hugs and kisses to you all and anyone whos going to have pitaitary surgery either for the 1st time or 2nd don’t worry just relax and go with it rest and recover as much as possible then get your life back please feel free to write to me my email is in this bio.
cheers Cathy ‘Mad’ Tia

Update November 26, 2003:

Hi all, well it is 6 weeks today since my second pituitary surgery, I developed diabetes insipidous but that has gone now hooray no more peeing every 2 minutes, ha, ha.

Well the last 2 blood cortisols were high again so I’m really bummed out the first 3 weeks after surgery it seemed to be on the way down and I lost 5 kg’s I was elated, but now the symptoms have returned the tiredness puffiness etc and I’m not even on any replacements I haven’t had a period so it looks like the adrenals will have to be removed bummer!, I have just completed a 24hr urine collection so the results should be in early next week everything hinges on this result if it is high they are taking me straight back in for the double adrenalectomy if anyone has any suggestions or has had the same experience please email me I feel depressed again just as I thought I had my life back on track.
kind regards Cathy ‘Mad’ Tia

Update December 4, 2003:

Hi everyone me again, well unfortunatley my cortisol is high again after 6 weeks post op so I am booked in to see another surgeon next Wednesday to talk through the procedure of a bilateraladrenelectomy (what a mouthfull), could anyone who has had this done please email me as I’m terrified and want to know what to expect in regards to recovery time, sickness, etc

keep your chins up

talk to you when I have more gossip
Cathy ‘Mad’ Tia

Update January 29, 2004:

Hi all well happy new year to you all. I have a CT scan date on Feb 16th of my adrenal glands then surgery will follow hopefully soon after that I’m scared and would love to hear from others who have had their adrenals out because I’ve heard some horror stories, please email me.

I have had an interview with a local magazine that goes out to the nation telling my story and journey with Cushings disease it was fun my husband and I have had photos etc I will post it when it comes out next week I just want others to be more knowledglable and perhaps people may come forward and talk to me if they suspect they may have it.

I would love to set up a support group in New Zealand because there is no one I can talk to here.

Well I’ll talk to you all soon and please email me if you have any words of encourgement.
God bless Cathy ‘Mad’ Tia

Update February 3, 2004:

Hi all! Well, I have more exciting news from the magazine article that has only been out two days. I have been asked to go on a morning talk show televised across New Zealand to talk about the disease and my story and have already recieved emails from others in NZ that have been cured. It is so positive it makes me want to get on and move forward to help others when I’m finally cured hooray! I’ll update soon when I’ve been on TV.

God is good god bless you all Cathy ‘Mad’ Tia

Update March 30, 2004:

Hi guys. Well I finally have a date for my adrenal surgery. 2 failed pit surgeries so here is their last ditch attempt to cure me hooray!

It is scheduled for the 15th of April 2 weeks time so I’ll get back to you as soon  as I’m up to it, please pray for me as this is the final time hopefully then I’ll be rid of this nasty disease.  I would love you guys to email me whoever has had the adrenals removed to tell me the good and bad things during recovery so I’m prepared.
cheers everyone and hang in there.

hugs cathy ‘mad’ tia

Update April 29, 2004:

Hi everyone. I’m back it’s 2 weeks today since my surgery the removal of both adrenal glands. I feel I’ve been to hell and back over the last 7 years but I’ve come out on top I’m sore and bruised but feeling the best mentally and emotionally the best in almost a decade. I’m on a normal dose of hydrocortisone which understand the average person produces and have already seen marked changes in my appearance like redness had gone, night sweats aches nausea are all gone in only 2 weeks so I’m looking forward to getting my body back.

Thank you all for your support and I will keep you updated as to my situation. You all must hang in there and fight fight fight! Your day will come in those dark days of despair never give up tommorow is always better and you don’t want to let this disease win you can do it.

Update July 3, 2004:

Hi everyone well it’s been ages since I wrote I have had both adrenals out and finally I feel normal most of the Cushing’s symptoms have gone and the old Cathy is slowly emerging it is nearly 3 months since surgery and I have lost 9kgs and am looking not so tired and puffy hooray when people ask how I’ve lost the weight I say I’m on a cortisol diet which they laugh and don’t understand but I know you all do.

Well if any of you are scared to have this surgery don’t be they do it all keyhole so it’s neat and tide and it has changed my life I feel like a near normal 28 yr old who can restart her life my husband and I are so happy we have been given a 2 year gap to try for a family before radiation to the pit gland to avoid Nelson’s Syndrome so it’s not over yet but I believe it will be all worth it soon.

Well take care all hold your heads up high and be strong.

Update September 26, 2004:

Hi it’s Cathy Tia here again, well my husband and i have just celebrated our 2nd wedding anniversary cushing free hooray!! IT IS A BLESSING TO HAVE MY HEALTH BACK. It has been five months since my adrenal surgery and have had one adrenal crisis due to an underlying viris which was a bit scary i was in hospital for 5 days being pumped full of hydrocortisone ironic really after 8 yrs of having too much oh well, i’m back and working full 3 different jobs and loving life. All of you out theree still waiting to be cured please hang in there it is so worth it you will never take life for granted again.

God bless to you all and please never give up.

Update January 31, 2005:

hi all well a little update to my story. It has now been 9 months since i have my adrenal glands removed i have lost 27kg’s and people are starting to recognise me again all of the symptoms are gone i now have addisions disease as my adrenals can shut down the meds i take are cortisone and hydrocortisone to help with balancing my hormones out. I have had one adrenal crisis but recovered well. Peter my husband and i are on the fertility track now i am on fertility drugs to hopefully bring us a little bundle of joy this yr i also have PSCO so having a baby is a challenge but i know God will bless us when the time is right. I am working again like a normal person and can get through the day without a sleep.

Life is great. To all of you in the beginning, midst or end recovery phase of this terrible disease please always have hope and determination, remember you are what you believe so keep positive.

God Bless Cathy ‘mad’ Tia

Update January 31, 2006:

Hi all well it’s beena yr since I wrote. Alot has happened for my husband and I. Last time I wrote we were embarking on a huge rollercoaster ride with IVF fertility treatment and guess what we have had two cycles and the second one worked like a dream. We were given 15% chance of ever getting pregnant with the trteatment so we are proof that doctors only know so much with much gusto determination prayer and support from family and friends we did it we are now 3 and a half months pregnant due August 10th 2006. We feel so blessed and want to let you all know this can happen for you keep the faith and search inside yoiurself about what your life is worth this disease is only a label not who you are, seek and you will find the answers even if it has taken yrs it’s taken me 10yrs of being sick surgeries lost hope and regained faith. God has a plan for all of us and now I’m going to be a mum i can hardly believe the blessings.

I have had 2 trips to the emergency ward with adrenal crisis being pregnant does put stress on the body so now i have altered my drtugs i feel great i have only had 2 weeks of morning sickness and noew i have full energy back and only get tired like anyone at the end of a day. I ahd emergency surgery last week for an abcess caused by mastitis even though i haven’ breast feed they tink because my immunity is lowered by having no adreanl glands it wa so serious.

In my mind I know i always have to be careful but my advice to eveyone is live each day like it is your last be knind and never stop loveing or giving because it will come back in ten folds as it has for me.

God Bless and kind regards to all my fellow cushies, families and supporters.

Hugs cathy tia

Update October 25, 2006:

Hi cathy Tia here from New Zealand last time i was trying to concieve through IVF and we did it we have had a beautiful baby girl Grace Ruby weighing 6 pounds 13 ozes 3 weeks early all is grand with all of us healthy and loving being a family. Keep the faith and hope if you believe with your heart your dreams will come true.

cathy tia

Update February 22, 2007:

hi 22/2/07 cathy here agin

i now have another new 5mm tumour on the right side of pit gland due to having nelsons sydrome after nearly 3 yrs ago having boyth adrenals removed

any suggestions on what to do? they want to give me radation. has anyone had this?

cheers cathy

Update May 3, 2007:

hi all well my daughter is now 9 months old , I mde the decision to havea breast re3euction last week and am so thrilled with the results the 12 yrs of cuhsings and three yrs of addsions (removal of glands due to recureent cushings) ravished my body i feel young again and sexy hooray for my husband!!!

I had a very scary time this week though due to the stress of the surgery on my body my addisions played up big time and i ended up in Er twice having cortisol shots and saline to give me balance, i’m still very tannedyellow and can’t seem to get on top of the balance but feel better than last week.

Has anyody experience addisions after cuahings?, i’d love to hear from you and ask how you mmagae your balances of medications and water balance.

until next time,

Hugs feloow cushies/addisions

Cathy Tia

Update September 17, 2009:

hi all well its been a while my daughter is now 3 and i have a beautiful miracle son called Elijah who is now 6 months old , i ahve had a great run since having my adrenals removed and had the breast reduction i’,m even breast feeding a real miracle and testament that if you have hope you can achieve anything. i ahve had many talks to churches and articles written to educate people in New Zealand and hope to give them hope whatever their circumstances.

unfortunatly i may ahve developed nelsons syndrome so am having an MRI in 2 weeks to see what the pituatary tumour is doing if it has grown i’ll have radiation to shrink it.

hope this finds you all well.

God Bess Cathy Tia

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Addison’s Disease: Periods at 4 years, Menopause at 5

Leave a comment

A five-year-old girl from Australia who started menstruating at the age of four will soon start exhibiting signs of menopause, a result of Addison’s disease.

Emily Dover’s birth was absolutely ‘normal and happy’. By the second week, however, she started growing at an unusual rate. She was the size of a one-year-old by the time she turned 4-months-old. By the time Emily turned 2, she had developed breast buds, body odour and a rash on her skin that was diagnosed as cystic acne.

In addition to Addison’s disease, Emily has been diagnosed with congenital Adrenal Hyperplasia, Central Precocious Puberty, Autism Spectrum Disorder, Sensory Processing disorder and Anxiety Disorder.

The 5-year-old’s adrenal glands don’t produce enough steroid hormones.

Emily’s mother Tam Dover said her daughter is body conscious and aware that she is different from other children her age, reports Mirror Online. Sadly, the little girl is unable to understand what she is going through.

Constant pain and reduced mobility required Emily to undergo weekly physiotherapy sessions. At present Emily is five years old, and has started menstruating. After she starts a hormone replacement therapy, she will hit menopause, with all the side effects a woman over 50 years of age has to face.

“She hasn’t even had a chance to be a little girl. She’s having to learn how to put panty liners on for menstruating,” Tam tells Mirror Online.

Tam has set up a GoFundMe page to raise money to cover the ‘astronomical’ costs of her daughter’s treatments and medical care.

“Each time her growth was measured it was always way above the 99th percentile, and often 99th percentile for a couple of years above her age,” Tam wrote on the GoFundMe page.

From http://www.hindustantimes.com/health/periods-at-4-years-menopause-at-5-the-little-girl-who-never-got-to-be-a-child/story-p2kkpyd31fvsBzP21LDWcO.html

~~~