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MaryO: Growth Hormone Issues

October 27, 2025

MaryO growth hormone, Growth Hormone Deficiency, MaryO , , , Leave a comment

Golden Oldie – 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!

30 Things About My Invisible Illness You May Not Know

April 20, 2025

MaryO Adrenal Insufficiency, Cancer, Golden Oldies, growth hormone, Growth Hormone Deficiency, MaryO, Pituitary, Pituitary Surgery, Success Stories, Treatments, Update , , , , , , , Leave a comment

invisible

 

I’ve been thinking about this since the article I posted on doctors not understanding what it was like for a post-op Cushing’s disease patient – ME!  I’m updating this for Cushings Awareness Month 2025.

I originally posted this on Facebook way back in 2010.

Edits from November 21, 2015 are in blue italic
Edits from September 25, 2023 are in red italic
Edits from February 29, 2024 are in green italic
Edits from April 2025 are in purple italic

November 21, 2010 at 6:31pm

I really liked Jessica’s list, so I decided to make one of my own.  I was looking in my blog for what I wrote already about Psalm 116 and found out that I already did a very similar list in September 2009.  Talk about bad memory!

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are: Cushing’s Disease and kidney cancer (renal cell carcinoma). I also have secondary adrenal insufficiency as well as a growth hormone deficiency. I had pituitary surgery on November 3, 1987 and had my kidney cancer (kidney and adrenal gland) removed May 9, 2006.  Having my adrenal gland removed acerbates my post-op pituitary issues. My one remaining adrenal gland doesn’t work well and I cannot replace my deficient growth hormone because I had cancer.

November 21, 2015:  I haven’t added anything much to this list – HOORAY!  OTOH, nothing has gone away, either.  

A couple days/nights a month, I have unexplained, random itching.  It could be on my foot, then jump to my stomach, then anywhere. It keeps me awake at night and is very annoying.  I originally had this in menopause and I’m very annoyed that it has come back.

I mentioned this to my endo last year because of the possibility of “hormone withdrawal” and he said I should probably talk to my PCP about this, and that it could be “serious”.  I haven’t yet because I don’t like the possibility of tracking down some other dread, unknown disease.  According to that great doctor, Wikipedia: 

Causes of formication include normal states such as onset of menopause (i.e. hormone withdrawal). Other causes are medical conditions such as pesticide exposure, mercury poisoning, diabetic neuropathy, skin cancer, syphilis, Lyme disease or herpes zoster (shingles). Formication can also be a result of stimulant intoxication (e.g. methamphetamines, cocaine) or alcohol withdrawal in alcoholics (i.e. delirium tremens), and is often accompanied by visual hallucinations of insects.

Also, I’ve been having terrible swelling, and pain in my left ring finger.  I will see my PCP about that on Wednesday after having this for about 8 months or so.  I looked up the possibilities on Dr. Google and there are too many to contemplate.  I hope it’s not arthritis.  I already know I can’t take meds for that.

September 25, 2023 – I’m able to take growth hormone injections – Omnitrope – again but I don’t see it making any difference.

In March of 2023 I had a total left knee replacement after many steroid injections and one series of hyaluronic acid.  I documented all that in another of my blogs. I am expecting to do the right knee possibly in the fall of 2024 but I’m putting it off as long as possible.

February 3, 2025 I had a total right knee replacement.  It was “easier than the left but I developed an allergy to something which is yet unknown and I had a terrible itch rash for about a month.

2. I was diagnosed with Cushing’s in the year: 1985; adrenal insufficiency in 1999; GH deficiency in 2004 and kidney cancer in 2006.

November 21, 2015:  Somehow, I forgot that I was diagnosed with osteoarthritis in the early 1980’s and took NSAIDs for about 30 years.  Those are another kidney cancer no-no.

In April of 2021 I had a Mohs Surgery for Squamous Cell Carcinoma.  A description and photos are available here: https://maryomedical.com/2021/05/09/the-mohs-nose/

 

3. But I had Cushing’s symptoms since: 1983 for sure.  Looking back, I can trace some other symptoms to the 1970s.

 

4. The biggest adjustment I’ve had to make is: Sleeping so much.  When I say I have to sleep, that’s it, no matter where I am, no matter what I’m doing.  From the cancer – not being able to take my arthritis meds.

 

5. Most people assume: I am completely healthy.  I had surgery, so everything is fine.  I am, however, lazy.

 

6. The hardest part about mornings are: getting up.  I could sleep until at least noon if I didn’t have an alarm AND something specific to do.  It’s also hard to get my joints so they work.  Sometimes I have a hard time standing.  I have a footed cane beside the bed to help me get up.

November 21, 2015:  I seem to be getting up earlier.  I have an issue with a joint on my ring finger, left hand.  It often throbs at night and wakes me up.

2023-2024, I seem to be waking up about 1 or so.  I guess because my 2-3 hour naps, my body is treating bedtime as just another nap.

2024-2025. I’m waking up about 3 and doing some online work, then napping for about 30 minutes to an hour until my alarm goes off at 9

7. My favorite medical TV show is: House.  I started watching it because an episode about Cushing’s was loosely based on a Cushie I know.

November 21, 2015:  House doesn’t seem to be on anymore so I no longer have a favorite medical TV show.

 

8. A gadget I couldn’t live without is: Wow, so many. My iPhone is the main one with a few others very close.

November 21, 2015:  iPad now.

 

9. The hardest part about nights are: Staying asleep.  I’m always tired but I often have to get up to go the the bathroom.  Then, I often have trouble getting back to sleep.

November 21, 2015:  Dreams, some scary, some that just play like endless loops until I get up.  I still get up for the bathroom, too. Pain, sometimes that itching. 

 

10. Each day I take __ pills & vitamins: Not much.  I only take Cortef and lisinopril/HCTZ.  I used to take a lot of other meds but, due to having only one kidney, I can’t take much of anything, including vitamin C, aspirin and NSAIDs.  I pray I don’t get headaches anymore!

November 21, 2015:  Nowadays, it’s only the Cortef.
If absolutely necessary, I take Alavert for allergies and Benadryl if I’m in an itchy pattern; Tylenol for headaches.  

Because of the cancer, I can’t take Growth Hormone any more.

September 25, 2023 – I’m able to take growth hormone injections – Omnitrope – again but I don’t see it making any difference.

 

11. Regarding alternative treatments I: have to clear anything I take or do with my kidney cancer surgeon so it’s easier to just not take anything.

 

12. If I had to choose between an invisible illness or visible I would choose: What I have.  While I wish people would understand better, I don’t want anyone to feel pity or single me out.

 

13. Regarding working and career: I’ve been fortunate – I’ve been a piano teacher forever and I can control my hours to get in naps when I need them.  I could not work a 40-hour job.

November 21, 2015:  I still teach piano, although it’s hard to play now due to that joint issue.  I also am webmaster for my church, for my husband’s company and the Cushing’s sites.  I also inherited my friend’s menopause site when she died.  So, there’s a lot of stuff to do, but I can still work naps in.  I still could not work a normal work day.

September 25, 2023 – I still teach piano, am the Director of Communications for my church and keep the Cushing’s sites going – sort of.  I still take a lot of naps.

 

14. People would be surprised to know: that I have trouble dealing with so many things.

 

15. The hardest thing to accept about my new reality has been: that I can’t be the Energizer Bunny any more.  No project days where lots of stuff gets done.

 

16. Something I never thought I could do with my illness that I did was: start a website and support group to help others.

 

17. The commercials about my illness: NONE!

 

18. Something I really miss doing since I was diagnosed is: I miss Sweet Adelines.  I loved the singing, the dressing up in sequins and false eyelashes to sing before huge crowds.  Almost like being on Broadway.  I also miss playing violin in a local orchestra.

January 2024, I bought a silent e-violin so I can start practicing again without bothering my 100-year-old mom. In March I joined a balalaika orchestra!

In 2025 I’m sill playing with the balalaika orchestra

19. It was really hard to have to give up:my arthritis meds.

 

20. A new hobby I have taken up since my diagnosis is: Naps, sleeping.

 

21. If I could have one day of feeling normal again I would: I cannot even imagine.  I could join a gym again, although for only one day it wouldn’t do much.  I could commit to doing something in the afternoons without napping before.  I could get some of my house tidied up…

 

22. My illness has taught me: a lot about hormones, glands, medical terms and… HTML.  I almost think I could have gone to med school if I’d had the stamina.

 

23. Want to know a secret? One thing people say that gets under my skin is: “Oh, my friend’s dog (or cat/horse/ferret) had that [Cushing’s].  The vet just gave the dog some pills and she was fine.  GRRRRRRRRRRRRRRRRR!

 

24. But I love it when people: listen to me when I try to tell them a bit about Cushing’s, even if it is a dumbed-down version.

February 15-16, 2024 I had the opportunity to be in both Fair Oaks Emergency Room and the hospital in Fairfax, VA.

Whenever a nurse/medical tech mentioned steroids, I asked what they knew about Cushing’s. One asked if it was a medication. DUH!

Needless to say, none were very Cushing’s-savvy. So, I gave them all the abbreviated version of my Cushie Story.

I think (and hope!) that they will all remember the day that they met a real live Cushing’s patient.. 

My left knee surgey was supposed to be in early January 2025 but it was snowed out.  Because it was rescheduled for more than a month later, I had to redo some testing.  I was amazed that the doctor in the walk-in clinic knew about Cushing’s although she’d never met a real one in the wild.  I spent a lot of time talking to her.

25. My favorite motto, scripture, quote that gets me through tough times is:

Psalms 116:

“1 I love the LORD, for he heard my voice;he heard my cry for mercy.

 

2 Because he turned his ear to me, I will call on him as long as I live.

 

3 The cords of death entangled me,the anguish of the grave came upon me;I was overcome by trouble and sorrow.

 

4 Then I called on the name of the LORD:”O LORD, save me!”

 

5 The LORD is gracious and righteous;our God is full of compassion.

 

6 The LORD protects the simplehearted;when I was in great need, he saved me….”

 

After I was finished with the long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who did the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.

 

I thought I had written down the verse carefully. I practiced and practiced, I don’t like speaking in front of a crowd but I said I would. When I got to church, the verse was different. Maybe I wrote it down wrong, maybe someone changed it. Whatever. When I read this Psalm aloud, I just started crying, it so spoke to me and my situation.

 

Another reading I love is:The Best Day Of My Life by Gregory M Lousignont

 

“Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate!

 

Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.

 

I will go through this day with my head held high, and a happy heart. I will marvel at God’s seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.

 

Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know.

 

Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for her and how much she means to me.

 

Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me.

 

I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.

 

And tonight, before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.

 

As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because know tomorrow is going to be the best day of my life, ever!”

 

When I’m feeling down, depressed or low, reading this and “my” Psalm can help me more than anything else.

 

26. When someone is diagnosed I’d like to tell them: Learn everything you can about your disease.  You know more about your body than anyone else.  If your doctor tells you something that you know to be wrong about *you* – get another doctor!  Don’t waste your life getting good care for yourself.

 

27. Something that has surprised me about living with an illness is: how intolerant other people can be and the discrimination that I have run into, such as not being included in some activity just because my physical limitations would make it inconvenient for them to deal with accommodating me.

 

28. The nicest thing someone did for me when I wasn’t feeling well was: trying to understand that I wasn’t just fat and lazy, I really had medical issues going on.

 

29. I’m involved with Invisible Illness Week because: I like people to know that just because someone looks healthy, they may not be.  There are lots of people out there with invisible illnesses who need understanding, compassion and, possibly, help.

 

30. The fact that you read this list makes me feel: like you’re really interested.

 

The 2009 version was pretty close!

Thanks for being interested enough to read this!

Travelling with Growth Hormone (Flying): MaryO

September 4, 2017

MaryO growth hormone, Growth Hormone Deficiency, MaryO, Other Diagnosis , , , , , , , , 1 Comment

This is from another blog post here.

Just after 3:00 pm Friday August 25, 2017 we took an Uber to Dulles Airport

Going through TSA there was no issue with my refrigerated growth hormone injections.

The Omnitrope was in its own case from the manufacturer.

I put that in that new iCool weekender case I’d bought for this trip.  I chose this one for these reasons:

  • For vials or pens (insulin, growth hormones, L-Thyroxin, polyarthritis medication)
  • Keeps your medication between 36°F – 46°F (2°C – 8°C) for 12 hours (I knew this trip would be about 20 hours, start to finish)
  • The iCool bag uses a new generation of chemical gel pack that generates very little condensation and have a slower thawing period than traditional ice packs. This allows patients with diabetes or those using temperature sensitive medications to transport their medications for a longer cooling period. The iCool Weekender keeps insulin or other temperature sensitive medications cool for up to 12 hours at 36°F – 46°F (2 to 8°C). This bag can carry either pens or vials. There is enough space inside to store needles.

I had the gel pack from the iCool frozen solid and put that in a small Rubbermaid lunch bag with 2 thin ice packs,  1 on top and 1 on the bottom.  If you don’t want to read all the way to the end, this system kept the growth hormone cold for the 20 hours going and returning but the 2 thin blocks had completely thawed.  The inner iCool was mostly frozen and the growth hormone was still cool.

Hooray!

I had the sharps separately in a little square container with just enough for the week.  I used the side pocket of the lunch bag to store my doctor’s note and clipped the whole thing with a carabiner to my backpack.

I also found a smallish sharps disposal container, although this was still kind of big for my needs, it was better than taking the whole huge one that’s in my bathroom.  This worked well and I have enough for 5 more trips 🙂

And that’s about it for medical information, at least until we get to Heathrow 🙂

…

Then, since we were coming from outside the UK we had to leave security area and go through TSA again.

I told the agent I was carrying refrigerated medications and she read the doctor’s letter.  Everything seemed like it was going well until I was flagged for more screening 🙁  I had to take all the stuff out of my carefully packed Growth Hormone bag and everything else was taken out of my backpack to be swabbed down.

…

After 20 hours at 4:15pm  (11:15 am at home) I finally removed the growth hormone from the cases.  The 2 ice packs had melted but the GH in its weekender case was still cool and that gel pack mostly frozen.  A good solution except for issues at Heathrow.

MaryO ~ Growth Hormone Update

June 21, 2017

MaryO growth hormone, Growth Hormone Deficiency, MaryO, Pituitary, Pituitary Surgery, Treatments, Update , , , , , , , , , 27 Comments

I’ve been dealing with Cushing’s since 1983.  The after effects of pituitary surgery since 1987, kidney cancer since 2006.  It’s time I felt better, already!

From 1999 to today,  not-so-quick recap from my bio:

1999 ~ Many people are now finding that they need HgH after pituitary surgery, so an Insulin Tolerance Test was performed. My endocrinologist painted a very rosey picture of how wonderful I’d feel on Growth Hormone. It sounded like a miracle drug to me!

I was only asked to fast before the ITT and to bring someone with me to take me home. There is no way I could have driven home. I got very cold during the test and they let me have a blanket. Also, though, lying still on that table for so long, my back hurt later. I’d definitely take – or ask for – a pillow for my back next time. They gave me a rolled up blanket for under my knees, too.

I don’t remember much about the test at all. I remember lying very still on the table. The phlebotomist took blood first, then tried to insert the IV (it took a few tries, of course). Then the endo himself put the insulin in through the IV and took the blood out of that. I remember the nurse kept asking me stupid questions – I’m sure to see how I was doing on the consciousness level. I’d imagine I sounded like a raving lunatic, although I believed that I was giving rational answers at the time.

Then everything just got black…I have no idea for how long, and the next thing I knew I was becoming aware of my surroundings again and the doctor was mumbling something. They gave me some juice and had me sit up very slowly, then sit on the edge of the table for a while. When I thought I could get up, they gave me some glucose tablets “for the road” and called my friend in. I was still kind of woozy, but they let her take me out, very wobbly, kind of drunk feeling.

My friend took me to a close-by restaurant – I was famished – but I still had trouble with walking and felt kind of dazed for a while. When I got home, I fell asleep on the sofa for the rest of the day.

But the most amazing thing happened. Saturday and Sunday I felt better than I had for 20 years. I had all this energy and I was flying high! It was so wonderful and I hoped that that was from the HgH they gave me to wake me up.

2001 ~ I had the ITT this morning. I don’t get any results until a week from Thursday, but I do know that I didn’t recover from the insulin injection as quickly as I did last time. The endo made a graph for my husband of me today and a “normal” person, although I can’t imagine what normal person would do this awful test! A normal person’s blood sugar would drop very quickly then rise again at about a right angle on the graph.

I dropped a little more slowly, then stayed very low for a long time, then slowly started to rise. On the graph, mine never recovered as much as the normal person, but I’m sure that I did, eventually.

The test this time wasn’t as difficult as I remember it being, which is good. Last time around, I felt very sweaty, heart pounding. I don’t remember any of that this time around. I do know that I “lost” about an hour, though. The phlebotomist took the first blood at 9:15, then the endo injected the insulin and took blood every 15 minutes after that. I counted (or remembered) only 4 of the blood draws, but it was 11:30 when they told me that my sugar wasn’t coming up enough yet and I’d have to stay another 30 minutes. It actually ended up being another hour.

Kim, the phlebotomist, asked me if I got a headache when they “crashed me” and I have no recollection of any of that.

Like last time, I was very, very cold, even with the blanket and my left arm – where the heplock was – fell asleep. Other than that – and my back hurting from lying on one of those tables all that time this wasn’t as bad as I remembered.

So, I waited for 10 days…

September 2004 ~ My new doctor was wonderful. Understanding, knowledgeable. He never once said that I was “too fat” or “depressed” or that all this was my own fault. I feel so validated, finally.

He looked through my records, especially at my 2 previous Insulin Tolerance Tests. From those, he determined that my growth hormone has been low since at least August 2001 and I’ve been adrenal insufficient since at least Fall, 1999 – possibly as much as 10 years! I was amazed to hear all this, and astounded that my former endo not only didn’t tell me any of this, he did nothing. He had known both of these things – they were in the past records that I took with me. Perhaps that was why he had been so reluctant to share copies of those records. He had given me Cortef in the fall of 1999 to take just in case I had “stress” and that was it.

The new endo took a lot of blood (no urine!) for cortisol and thyroid stuff. I’m going back on Sept. 28, 2004 for arginine, cortrosyn and IGF testing.

He has said that I will end up on daily cortisone – a “sprinkling” – and some form of GH, based on the testing the 28th.

October 2004 ~ I had cortrosyn and arginine-GHRH stimulation test at Johns Hopkins. They confirmed what the doctor learned from reading my 4 year old records – that I’m both adrenal-deficient and growth hormone-deficient. I started on my “sprinkle” (5 mg twice a day) of Cortef now and my new doctor has started the paperwork for GH so maybe I’m on my way…

November 2004 ~ Although I have this wonderful doctor, a specialist in growth hormone deficiency at Johns Hopkins, my insurance company saw fit to over-ride his opinions and his test results based on my past pharmaceutical history! Hello??? How could I have a history of taking GH when I’ve never taken it before?

Of course, I found out late on a Friday afternoon. By then it was too late to call my case worker at the drug company, so we’ll see on Monday what to do about an appeal. My local insurance person is also working on an appeal, but the whole thing sounds like just another long ordeal of finding paperwork, calling people, FedExing stuff, too much work when I just wanted to start feeling better by Thanksgiving. I guess that’s not going to happen, at least by the 2004 one.

As it turns out the insurance company rejected the brand of hGH that was prescribed for me. They gave me the ok for a growth hormone was just FDA-approved for adults on 11/4/04. The day this medication was approved for adults was the day after my insurance said that’s what is preferred for me. In the past, this form of hGH was only approved for children with height issues. Am I going to be a ginuea pig again? The new GH company has assigned a rep for me, has submitted info to the pharmacy, waiting for insurance approval, again.

December 2004 ~ I finally started the Growth Hormone last night – it’s like a rebirth for me. I look forward to having my life back in a few months!

January 2005 ~After a lot of phone calls and paperwork, the insurance company finally came through at the very last minute, just as I needed my second month’s supply. Of course, the pharmacy wouldn’t send it unless they were paid for the first month. They had verbal approval from the insurance, but the actual claim was denied. Talk about a cliff hanger!

Later January 2005 ~I’ve been on the growth hormone for 7 weeks now, and see no change in my tiredness and fatigue. A couple weeks ago, I thought there was a bit of improvement. I even exercised a little again, but that was short lived.

I feel like my stomach is getting bigger, and Tom says my face is looking more Cushie again. Maybe from the cortisone I’ve been taking since October. I can’t wait until my next endo appointment in March to increase my GH. I want to feel better already!

March 2005 ~ My IGF-1 was “normal” so I can’t increase the GH.

September 2005 ~ I don’t see any benefit with the growth hormone.

January 2006 ~A new year, a new insurance battle. Once again, they don’t want to pay so I have to go through the whole approval process again. This involves phone calls to Norditropin (the company that makes the GH), my endo, iCore Specialty Pharmacy (the people who prepare and ship the meds) and my insurance company. This is turning into a full-time job!

April 14, 2006 ~I just went to see my endo again on Thursday to see how things are. Although I know how they are – I’m still tired, gaining a little weight, getting some red spots (petechiae) on my midsection. He also noted that I have a “little” buffalo hump again.

My endo appointment is over. Turns out that the argenine test that was done 2 years ago was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.

So, I’m off GH again for 2 weeks, then I’m supposed to be retested. The “good news” is that the argenine test is only 90 minutes now instead of 3 hours.

April 27, 2006 ~ Wow, what a nightmare my argenine retest started! I went back for that. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn’t decided to go home after the test.

The next day I felt fine and drove back home, no problem. I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.

They took me in pretty fast since I was in so much pain, and had the blood in my urine. They thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn’t the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.

My open radical nephrectomy was May 9, 2006, in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.

My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believes he got it all. He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I’m cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.

I credit the argenine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The argenine test showed that my IGF is still low but due to the kidney cancer I cannot take my growth hormone for another 5 years – so the test was useless anyway, except to hasten this newest diagnosis.

August 19, 2006 ~ I’ve been even more tired than usual now that I’m off GH.  But I also had cancer.

October 2006 ~ I went to see my Johns Hopkins endo again last week. He doesn’t “think” that my cancer was caused by the growth hormone although it may well have encouraged the tumor to grow faster than it would have.

I was so stupid way back in 1987 when I thought that all my troubles would be over when my pituitary surgery was over.

2016/2017 ~ So.  My 10 year kidney cancer anniversary passed, then 11.

May 4, 2017 ~ My endo at Hopkins and I talked about maybe trying growth hormone again.  We tested my levels locally and – surprise – everything is low, again.

So, we started the insurance routine again.  My insurance rejected the growth hormone I took last time around.  I just love how someone, a non-doctor who doesn’t know me, can reject my person endocrinologist’s recommendation.  My endo who specializes in Growth Hormone, who runs clinical trials for Johns Hopkins on “Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.”

That insurance person has the power over the highly trained physician.  Blows my mind.

But I digress.  My doctor has agreed to prescribe Omnitrope, the insurance-guy’s recommendation.

June 14, 2017 ~ I got a call from my insurance.  They “may” need more information from my doctor…and they need it in 72 hours.

My doctor’s nurse says that they have to refer this to their pharmacy.

June 15, 2017 ~ I got a call from the Omnitrope folks who said they will need approval from my insurance company <sigh> but they will send me a starter prescription of 30 days worth.

June 16, 2017 ~ I got a call from the Specialty Pharmacy.  They’re sending the first month supply on Tuesday.  Estimated co-pay is $535 a month.  I may have to rethink this whole thing 🙁   We sure don’t have an extra $6000.00 a year, no matter how much better it might make me feel.

June 19, 2017 ~ The kit arrived with everything but the actual meds and sharps.

June 20, 2017 ~ The meds and sharps arrived along with the receipt.  My insurance paid nearly $600 – and they took my copay out of my credit card for $533.

I still have to wait for the nurse’s visit to use this, even though I’ve used it in the past.

I’ve been doing some serious thinking in the last 24 hours.  Even if I could afford $533 a month for this, should I spend this kind of money on something that may, or may not, help, that may, or may not, give me cancer again.  We could do a couple cruises a year for this much money.  I’ve pretty much decided that I shouldn’t continue, even though I haven’t taken the first dose of this round.

What will happen?

Stay tuned!