Panhypopituitarism and SOD/ONH life updates

I know it has been forever since my last detailed health update, so I decided to get you guys all caught up on what has been going on over the last year or so.
Links:
Panhypopituitarism 101: • Panhypopituitarism 101...
Adrenal Insufficiency info: www.niddk.nih....
Adrenal Crisis info: medlineplus.go...
Solu-Cortef Injection Info: • 3.5. Solu-Cortef, Act-...
CORRECTION:
In this video, I said I was showing symptoms of Cushing's "disease" when I was on an excessive amount of steroids, the correct term is Cushing's "syndrome". Here is the info on that rare condition: www.mayoclinic....
#SpoonieSpeak links:
/ spooniespeak
www.whentaniata...
I haven't been doing much online lately, but here is my website. You can find all of my social media contact links there: insomniadoodle...

[@xSuperNova]

So glad I found this. It's nice to see videos addressing this. I have a one year old with the same conditions. Gives me so much hope for her future.

[@InsomniaDoodles]

I’m glad that I can be a source of comfort for you! It’s great that your child was diagnosed so early! Getting treatments early on will make a huge difference! My condition is so severe partially due to the fact that I was not diagnosed or treated until I was 13 years old. If I can do this well despite that delay in care, your son should do even better! :) If you have any questions or if you just want to talk about this at all, feel free to get in touch! You can find my Facebook link on my website, www.insomniadoodles.com.

[@rpowell215]

I just wanted to say your amazing youve been through so much . Be proud of yourself your being proactive and looking for help. Things can get better and you cant work now but who knows what opportunities you will get in the future, stay positive take care xxx

[@InsomniaDoodles]

Thank you so much!

[@kandimoore5877]

Thank you so much for sharing and I'm sorry about that lady treating you that way I know how that feels thank you for your honesty I can relate to you so much!

[@InsomniaDoodles]

Kandi Moore Thanks so much for your comment! ❤️ And there's no need to apologize for her actions, but thank you. :) Some people have never experienced poor health and have no way to empathize. That's why it's so important for us to speak up and explain it to them when we get the chance!

[@nicolephillips2021]

Wonderful video as always. Thank you for being real and sharing. I am panhypopituitary as well and it is a hiden strugle that most just dont understand.

[@InsomniaDoodles]

Nicole Phillips Thank you so much for watching and sharing your thoughts! I'm glad you liked it. :) I really want to try to make more videos like this. Your support gives me the nudge I need to do that!

[@vanzandtVids]

Thank you! My 3 yr old is newly diagnosed with sod/onh and ocular albinism. She has nystagmus as well. They keep passing us around to everyone…. But an endocrinologist smh. Thank you! I will call Monday to get her checked out. She has these crashes and it’s hard to watch.

[@martynap4750]

I am so happy that someone make videos about panhypopituitarism. I understand completely what is it like when others think you are healthy, only becouse you look healthy. Sometimes even my family and friends don't belive that I feel ,,that bad'', becouse it's ,,only hormones''. And sometimes they think that I complain for attention, that's the most annoying thing ever. I hope you will feel better and find a job that you could do from home, maybe a graphic designer ? :) I am really curious about Prednisone, since I could remember my doctors had prescribed me only Hydrocortisone, and now I take 10-15mg per day. Maybe prednisone would work better. One thing i don't like is when in one day i take extra dose of hc becouse I excercise a lot or I feel that I need it, and in the next day If I take smaller dose, I feel knackered, I tremble and feel like I have ADHD, and I sweat a lot. It's like my body just get used to more hormone and want that dose all the time. I feel like I am addicted to a drug or something.

[@InsomniaDoodles]

Thanks for taking the time to comment and share your story! I completely understand what you mean! You;re actually right about feeling addicted to higher doses. The steroids (hydrocortisone) that we take actually is addictive! I don't know if the other hormones we take are addictive or not, but they might as well be considering we have to take them for the rest of our lives! Haha! I considered graphic design actually, but I unfortunately have very poor vision because of the Optic Nerve Hypoplasia that caused my panhypopituitarism. I'm not completely blind, but my vision blurs a lot, and eyestrain happens so easily, it would get too frustrating for me. I took a class on social media marketing though, so I'm hoping I might be able to apply that if I ever get to move to a bigger city where work like that is more available! Even then, I have some days when I can;t do anything but rest, and I HATE the feeling of letting people down when I can't do my job. I would much rather be poor and do freelance work when I have the energy than try to get a job with regular hours. It's super frustrating, but I'm starting to come to terms with that. :) Everybody is different, though! I know a lot of PHP patients who are able to handle work. I just happen to have a particularly severe case. And it is my pleasure to make these videos! :) I love being able to talk o other PHP patients and help people understand what this condition is.

[@martynap4750]

Thanks for the reply ! Really ? My doctors should've told me that. When I started treatment they say that I will take most of my medications till i die, but they didn't told me about the bad sides of those meds. Yeah, unfortunately drawing for hours would be really hard, even on a paper, don't mention looking on a computer screen all day. Oh that's great ! social media are so important these days, most of the companies have their accounts on facebook etc. so there should be a lot of job offers :) I know that feeling, but it isn't our fault, it's not like we choose to have this condition and to feel bad in some days and good in other days ! This condition is a huge part of our lives so we have to accept this :) I would love to do that type of work, but I'm still trying to find what I like, Soon I will graduate from university with a degree in applied information technology, but I don't feel that this is what I want to do for the rest of my life. Exactly, I didn't work yet so I guess I will find out soon if I could work or not. That's great ! I hope there would be more videos like this ! It's so important to share awareness. These kind of videos can help others with that condition, and help their family and friends to understand what they are going through.

[@InsomniaDoodles]

My doctors never told me about the side effects of my meds either until I started complaining about certain symptoms. I guess they just decide that since we need to take these meds to live, the side effects don't really matter. I'm really glad you're able to focus on school! Information technology is actually a great choice, though it might not be all that exciting. If you find out you CAN handle a full-time job, office work is really what you should be going for, and that degree will help you out there big time. :) It's my pleasure! I'm glad you are enjoying my videos! I'll keep making them! Thanks so much for commenting and motivating me to keep doing this! ❤️

[@martynap4750]

They should told us, because sometimes we don't know if a symptome is a side effect or something we should be more concern about. Thanks ! It was one of the reasons. Working behind a desk would be a lot easier than a hard manual job. I really am ! You're welcome ! They are really great to watch and I'm waiting for more ❤️

[@InsomniaDoodles]

Thank you so much!

[@seattlenation3906]

THANK YOU FOR POSTING!!!! My son is 8 years old and has ONH and need to learn all i can if you can help ?? Bless You !!!!

[@InsomniaDoodles]

I am so sorry it took me so long to see this message! I would love to talk to you more about ONh and help as much as I can with your questions. I have a contact form on my website where you can send me a message and I will respond via email: insomniadoodles.com/contact/

[@rpowell215]

Hi, thanks for your video. Interesting to hear your experience. I have panhypopituitarism aswell. Had 4 episodes of adrenal crisis in the last 20years since developing hypopituitarism following surgery in 1998. I think i now know when to take extra steriods. I can usually take extra orally before going into crisis. I go on the theory of take 5mg extra if your unsure. Symptoms i get when im low on steriod is dizzyness and sickness. I take more when i have a heavy cold, sickness bug, for heavy exercise and when going for dental procedures. It knocks your confidence when you have set backs but dont give up. I fortunatley manage to work fulltime. I have bad days and it can get tough because others dont understand such a complex condition. If i was you i would take the time off you need. I take 10mg of steriod in the morning then 3 doses of 2.5mg every 3 1/2 hours . This regime really works for me. Im on Hrt rather than birth control elleste duet 2mg. ive tried several types this is the best ive found for me . I live in the uk ive been looked after best some amazing endocrinologist dr ball, dr james and dr quinton at the rvi newcastle. My main issue now is also my weight. I gained 10 stone, im on a strict diet and im not eating refined carbs which seems to be working lost 11lbs in 4 weeks. I hope you dont mind me commenting just thought it may help others. Its a tough condition but it is possible to live a 'normal life'. Dont give up be strong and determined and put yourself first. Ask the questions, get the answers you need and try to relax. Xxx rach

[@InsomniaDoodles]

Thank you so much for your kind words and support. :) I appreciate you trying to encourage me and offer hope, but I know that in my case, gainful employment is just not possible. My panhypopituitarism is very severe. I have had it since birth, so my body has never been able to create hormones or regulate functions on its own, so all of that has really made my body weak. I thought I might be able to handle work before, so I tried, and it put me in the hospital. Ever since that happened, my health declined even more. I have decided that in order to be able to live my life comfortably without extra risk to my health, I need to come to terms with the fact that I can't handle work. I'm nearly 30 now, and I have tried to work twice, both times ending with me becoming too ill to continue working. Like I said, I really do appreciate your encouragement, but in my case, I have proven that my body can't handle it. That doesn't mean other people with my condition can't, though! I don't want to discourage anyone! My case is very extreme, so I really don't represent the average PHP patient at all. There are plenty of folks with congenital PHP who are able to work. No two patients are the same, because some may have more function to their pituitary gland than others. In my case, mine does not function at all, and never has. It really stinks that you lost you pituitary gland due to surgery, though. It was probably extremely difficult for you to come to terms with the fact that your health was compromised so much. I can't imagine having a healthy body, then losing that. I'm so glad you were able to get back on your feet and keep working! That is awesome, and inspiring! :) Thanks so much for commenting, and I wish you the best of luck with your treatment!

[@rpowell215]

Insomnia Doodles . Thanks for replying. I totally understand and thats so true no 2 people are the same. Thankyou for sharing your videos and your experiences . Take care xxx Rach

[@InsomniaDoodles]

Of course! :) I'm happy to share what I can. Thank you for your comments! Best of luck to you on your treatment!

[@taliapointing8083]

Im 20 and sometimes feel very gulty especally seeing my mum and sister come home from work i feel very gulty knowing that i most probably wont be able to work

[@InsomniaDoodles]

I know exactly what you mean about that guilt. I have struggled with that in my adult life as well. Unfortunately with the way society is, people tend to place a lot of worth on someone's ability to work. Having a disability, ESPECIALLY an invisible disability like Panhypopituitarism, tends to be looked down upon. It's a horrible feeling, and so many people misjudge us because of it. Just hang in there! If your body can't handle work, it is not your fault! This condition can be extremely debilitating at times. If someone is being ignorant and judging you because of that, it's a flaw on their end, not yours.

[@taliapointing8083]

Mum rarly aays stuff like that and whe sje does i dont think sje knows i feel quilty about that and it sort of jelps that people seeme as a blind/visualy impared person but it does suck

[@InsomniaDoodles]

I completely understand you. The struggles we face with Panhypopituitarism aren't understood well by most people. When I went though Vocational Rehabilitation Services to try and find work that I could do, they focused more on my low vision than they did on the debilitating symptoms of my Panhypopituitarism, and I honestly feel like those symptoms hold me back way more than my low vision does.

[@taliapointing8083]

Yes i also found school hard becquse of tha aids thqt helped me and becquse of thqt i dropped out my lazt year

[@InsomniaDoodles]

That really sucks. I'm sorry to hear that! I haven't been able to attend college because my vision and my health hold me back from that, too. It's a pretty cruddy feeling.

[@Israel_ILY]

do you know anything about fertility treatments with php

[@InsomniaDoodles]

Princess of israel I know that it is possible, but depending on how severe the PHP is, pregnancy might not be safe for female PHP patients. You would have to speak with a “reproductive endocrinologist” about fertility treatments. It is different for men and women.

[@jhuntley]

Just curious why dosage of hydro-cortisone you are on. I have panhypopit & after my first adrenal crisis, was placed on 40 mg of hydro-cortisone. Now I'm down to 10 mg and will be on that dosage for the rest of my life. I'm now on birth control to handle my progesterone & estrogen deficiencies but definitely having issues with weight gain. Good luck getting disability.

[@InsomniaDoodles]

Jamie Huntley I am on 25mg of hydrocortisone a day now. It isn't uncommon to be instructed to take larger amounts of steroids (hydrocortisone or prednisone) for a short amount of time, then taper down to a smaller dose to be taken regularly. This is what is known as a "stress dose". I'll make a video explaining that soon, but basically, a stress dose is to help your body compensate for increased amounts of stress or situations that would cause a normal person to need more of the stress hormone "cortisol". I was recently instructed to take a stress dose of double my usual dosage amount for a few days when my endocrinologist increased my dose of thyroid meds, to help my body with the possibly stressful transition of increasing hormone amounts. I am also instructed to take a "stress dose" when I become ill, injured, emotionally distressed, or before I plan to do exercise or strenuous activity. Sometimes the "stress dose" is just a small amount, like 5 or 10 extra mg on top of my regular dosage, depending on the amount of stress I am going to be dealing with. For example, I will occasionally take 5mg extra before I go on a planned social outing. If I feel a cold coming on, I might take 10 extra mg just in case, for two or three days while I monitor my symptoms. If my condition worsens, I will take double my normal dose for a few days, and call my endocrinologist for further instructions if things do not improve after a week or so. Because I have been taking care of my adrenal insufficiency for a very long time and I have learned my body's cues so that I am a pretty good judge on when I need to stress dose, my endocrinologist trusts me to manage that on my own, but she has me keep notes for her detailing when and why I stress dose. If it appears that I am taking stress doses too often, a change in my overall therapy might be considered. Adrenal insufficiency alone is very hard to manage because blood tests just aren't accurate enough on their own to determine whether or not treatment is working well for the patient, so there is a lot of trial and error and guesswork on the part of the patient and their doctor. It's SUPER complicated, but I'm starting to get the hang of it more and more over the years. Anyway, I hope my reply isn't too long! It seems to me like your doctor started you off on a stress dose of hydrocortisone to help your body catch up a bit. That's normal! 10mg once a day would be too small a dose for me, but like I said in this video, treatment is different for everybody. My pituitary gland doesn't work at all on its own, so I have to completely compensate for all my missing hormones, meaning I take fairly large doses of everything. I'm wishing you the best of luck with your treatment, and I hope I've been able to help you navigate it a little bit better! If you have any more questions, or if you just want to talk about it, let me know! I'm more than happy to keep in touch! :) Thanks for your comment! Take care!

[@jhuntley]

Oops! I just saw your reply. Sorry! I always carry a stress dose with me just in case and also have a dose via Solu-Cortef at home. I hope to talk with my endo dr about switching to the actual hormones instead of birth control. I never had a weight problem until my first major adrenal failure which landed me on 40 mg of cortisone but being on birth control has me gaining weight regardless of my diet.

[@InsomniaDoodles]

Jamie Huntley That's okay! :) Sometimes I get busy and forget to reply to messages for days! Haha The stress dose I was referring to is different from the shot, but those are also important to have on hand. I have a solu-Cortef shot with me at all times, and one in my medicine cabinet at home as well. I hope I'll never need it, but it gives me peace of mind to have it just in case. Yeah, getting off birth control has been a major help with weight loss and just general feelings of well-being. The hormone replacements I'm on now still aren't perfect, I keep missing periods because we haven't found the right balance yet, but I think we'll get there. It was a real struggle trying to get my endocrinologist to switch me off of birth control, but I'm glad she finally decided to give the hormones a try instead. She finally went for it when my bone density came back showing bad results. Good luck with your treatments! Let me know if you do get off birth control! I hope it helps!