Friday, January 27, 2012

Better cortisol control with a pump?

Adrenal insufficiency can be caused by Addison's Disease, Congenital Adrenal Hyperplasia, (CAH), adrenoleukodystrophy, sudden withdrawal of corticosteroids, adrenal tumors, as well as a number of other disease processes.

People with adrenal insufficiency (AI) must take replacement steroids, usually in the form of hydrocortisone tablets to try and replicate the natural rhythms of cortisol that the body supplies. AI patients need hydrocortisone to maintain blood sugar, blood pressure, energy, and to mount a stress response to illness.

It often occurred to me how great it would be if there was a way to gauge Annie's circadian rhythms, as it related to her natural need for cortisol, and supply it through a subcutaneous pump, much like the pumps diabetics use to release insulin.

Well, Dr. Peter Hindmarsh, an endocrinologist at Great Ormond Street Hospital in the UK, actually does this for his patients, and from the sounds of this article, he does it with good success. He has his patients check in once a year to closely monitor their need for cortisol through the day, and adjusts their dosing schedule/amount based on his findings. This helps his patients get the right dose at the right times, affording them the best quality of life possible.

My question: why don't we have this technology in the US? Or do we? A subcutaneous pump that delivered the optimal dose of hydrocortisone could be life changing for those with adrenal insufficiency.


SuperFreak said...

I am getting ready to test this theory in 2.5 weeks. I'm a person who has had a bilateral adrenalectomy which means I have no adrenal glands any more. I have an excellent endocrinologist here in WA state who has stepped out onto the limb for me to try this. I've been on sub-q hydro shots for a couple of months now and have done better than either of us could have ever imagined.

The sucky thing about the pump is right now it's completely out of pocket, but we'll see if it's going to work... Praying it will... Cross fingers! At this point it seems like most endos in the US are opposed to trying this technology, hopefully my experience will change their minds.

Jean said...

That is exciting news! Would you be willing to share the name of your endocrinologist, so that if others in this area want to investigate this option, they can?

I will pray for a great result--let us know how it goes.

SuperFreak said...

Thanks Jean!

At this point, I'm not willing to disclose my endo's name without their permission. They are stepping out on a limb for me since it's not FDA approved. It was quite the uphill fight to get here. I hope that's understandable (forgive me if it's not, I also have Asperger's syndrome and I'm not always the most socially suave.) But I can keep y'all updated on how things are going and perhaps once we get a good baseline I can share more info and at that point disclose more. I am hoping that my endo might be willing to write a paper on it as well.

My advice for anyone interested in the pump is to try the sub-q hydro shots. I use the short insulin needles and just go right into the belly fat. That has been nothing short of a miracle drug for me. The sub-q hydro has given me enough energy to go to college and play ice hockey. I essentially feel like what I imagine normal to be. :-)

jean said...

I think your decision is wise regarding not disclosing your endo's name without their permission, or until they write a paper on your case.

It IS an exciting development, though, and I am anxious to hear how it works for you. As you said, the sub-q is already working wonders!

Keep us posted and thank you so much for sharing your story--I hope this will give others encouragement to try this too!

SuperFreak said...

Thanks for understanding Jean! :-)

In my heart I KNOW this is going to work. I just have that feeling. I don't think I would have fought so hard for it if i didn't feel it.

Lisa aka HypoGal said...

Hugs. Thank you for your heart felt blog. I am so sorry for your loss. I have secondary Addison's due to Sheehan's Symdrome. Thank you for creating awareness.

Jean said...

Thanks, Lisa--and thanks for sharing how you developed adrenal insufficiency. Do you have a blog or place where you describe what happened and how you were diagnosed with Sheehan Syndrome?

MyHeartSong said...

Can you explain how you did the sub-q injections? I have absorbtion problems and have been on hydro, prednisone, and now dex at high dosage. Nothing helps bring the quality of life up. Very interested in the injections.

Jean said...

Hi MyHeartSong--

If you contact me on the link under "More Information," I can send you a few links that may help you. I'm sorry you're having absorption problems--that was one of Annie's issues, too. VERY frustrating.

Looking forward to hearing from you!

Nicola Martin said...

I really hope someone can help me learn more about this illness. My gf and I live in the USA and that quality of care she is getting regarding this illness is very poor. She has no quality of life and is drained everyday no matter what dosage of steroids she takes. I am at a loss. Currently I am looking for another Endo in my area ( Cincinnati, OH ). I am hoping that I find someone that can help us more. Her current Endo seems to be at a loss, as to what to do to help. Reading the comment here help a lot and really appreciate them as it gives me ideas on what to do.

Thank you for listening.

Jean said...

Dear Nicola--

I'm sorry to hear that you and your friend are having such a hard time figuring out adrenal insufficiency. I wish your experience was unusual, but if it's any consolation, it's not!

It's good that you're looking for an endocrinologist that is helpful--there are many different things you can try to help sort out common problems. One of them is how much of a dose to take, another is when to take them. Has your friend tried taking her meds more along the lines of a circadian rhythm, as in earlier in the morning, say 4-5 am, then again around noon, again around 6 pm and even again at 8 or 10 pm? There is a doctor in the UK who has studied this extensively. Here is a link to a PDF describing this:'S.pdf.

The other thing to look into is the medication itself. Some people find that hydrocortisone works better, some take prednisone. Some people also need to take florinef, or fludrocortisone.

There is a ton of information available on the internet, but you do have to weed through some things...and it helps to know what you're looking for, too.

Have you checked into the website? Or

Let me know if any of these ideas seem helpful, and maybe I can point you in a better direction. Meanwhile, you're doing a good job--just investigating this for your friend. God bless you both.

Anonymous said...

Dear Nicola,

Have you also tried the Addison's Self Help Group? It's a UK site that is the best for information that I've ever seen. Web address is - hope this helps. They have a lot of free info or you can subscribe to use the forum (chat).

Ashley Samples said...

Can you tell me who this Dr is? I have been struggling for 2 years with my levels and I'm always sick and fatigued. Please help me find a doctor

Ashley Samples said...

Can you tell me who this Dr is? I have been struggling for 2 years with my levels and I'm always sick and fatigued. Please help me find a doctor

Jean said...

Ashley, you might want to contact this person: She's been using it for a year and might be able to help.