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Physiologic dose of hydrocortisone for cortisol replacement

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Posted 5/2/2015 9:51 PM (GMT 0)
Hello All!!!

First of all, "HI"--it's been a long time since I have been on this forum and hope that many have found healing and health! I am the mom of a Lyme patient, and this forum was, and has been, and always will be, my favorite!! :-)

Just wanted to ask you all a question or ask for experience, positive or negative, with PHYSIOLOGIC doses of hydrocortisone.

We spent YEARS warning our daughter and keeping her away from steroids AT ALL COSTS! So, she has a very deepseated fear of them. As do I. HOWEVER, she has recently had a lot of testing on her adrenal glands--blood labs, ACTH challenge test as well as a pituitary specific MRI. The results show that her pituitary is not sending the signal to adrenal glands to make cortisol. Her cortisol levels are almost nonexistent.

Her endocrinologist (NOT Lyme-literate) is recommending a very small dose of hydrocortisone for replacement. Cortisol is necessary for life, so it is a serious decision. After much research, I told her I thought she should take it--at least temporarily. The dr will re-check to see if she will need to stay on it.

So, she did take it--one 5 mg dose in the morning, and 2.5 mg at night. She stated that after the 2nd dose, she had the worst pain she has had in a long, long time.

In all my research, I know that this is not a typical response to steroids. Steroids decrease inflammation and usually make people feel better, at least at first. I do know, however, Lyme patients are in a class of their own as far as reactions.

I believe that her reaction is due to her intense fear of the steroid.

Will you all share any thoughts and/or any odd reactions you had to a PHYSIOLOGIC dose of hydrocortisone? Please, I am not interested in people telling me how bad steroids are--I have already walked down that road and am well aware. This is a totally different thing than typical steroid dosing, which I am vehemently opposed to. My hope is to reassure her with your responses.

Thank you in advance!!!
Posted 5/2/2015 11:08 PM (GMT 0)
We need cortisol to live. I was having a similar problem and I needed it to function. Good news is that it was temporary, but absolutely necessary! It is a physiologic dose (keep in mind the right dose differs from person to person). As for her pain, I do not know the answer. She may need to have her dosing adjusted. She is on a very low dose.
Posted 5/2/2015 11:52 PM (GMT 0)
Right, the human body needs cortisol, and she will probably begin to feel better soon. It is like insulin or thyroid medication, the body can break down and cease to function normally without it. She is just replacing what her body is not making, and it is a good thing that we have the ability to have medications that assist with homeostasis in the body.
Posted 5/3/2015 3:52 AM (GMT 0)
treehousemom,

My daughter has also been diagnosed with "secondary adrenal insufficiency" as well, and needed/needs physiologic replacement levels of hydrocortisone. The posts on this thread so far are right on the mark as to the importance of such a replacement dose for those that are deficient in cortisol. In other discussions, those who are critical of replacement doses have not explained why it is preferable to remain immune suppressed or to die from a deficiency of this absolutely critical hormone. The real issue is that cortisol levels ABOVE OR BELOW normal physiologic levels are immune suppressing.

The one caveat is that many knowledgeable physicians would advise to first try dietary/supplemental means of normalizing ACTH production. If this strategy fails as it did in the case of my daughter, then low dose replacement may certainly be indicated. There are two possible scenarios. Taking unnecessary hormone creates a situation of excess "free" serum cortisol which is immune suppressive. Taking an accurately tested and calibrated amount of low dose replacement cortisol (physiological), by definition, creates no systemic excess, and supports healthy immune function.

I have no idea as to why your daughter had pain from the low dose replacement dose. I am not a physician, nor does this discussion constitute medical advise. I would advise that the most knowledgeable of physicians be employed to investigate the matter.

Here is the link to a past discussion:

https://www.healingwell.com/community/default.aspx?f=30&m=3078473


Here is a link to a long blog that places my daughter's adrenal insufficiency in the context of her overall illness. It is a very long post!

https://www.healingwell.com/community/default.aspx?f=30&m=2865045


Don

Post Edited (Heathersdad) : 5/2/2015 10:22:33 PM (GMT-6)

Posted 5/3/2015 3:55 PM (GMT 0)
Thank you all for your comments. Don--I have seen you on here before and maybe even "talked" with you. . . . Our daughters were both treated at Hansa! My daughter is getting better, but not where she needs to be yet and we are hopeful that correcting her cortisol levels will take her to the next level. Recovery has been very up and down, and she will do well for awhile, then nosedive again. It makes sense to me, that the cortisol level could be the culprit for this.

Did Heather have any noticeable improvements from taking the hydrocortisone??

Like I said before, I really believe that my Caity is so afraid of steroids after being told to stay away from them by every dr we've been to, that it could just be the fear that is causing symptoms. I really would love to hear about any improvements in Heather's health that she might attribute to the higher cortisol level.

When you say, bioidentical hydrocortisone, do you mean a cream?? I have asked pharmacist if he can compound this, thinking that maybe the thought of a more "natural" supplement would be more palatable to Caity. He did say that he could, but he felt there would be no real difference between the two forms.

Thank you again, for your thoughts and comments everyone!! :-)
Posted 5/3/2015 4:13 PM (GMT 0)
Don--

I am sorry I replied before I read the blog post. It is very informative and helpful!! I see that the cortisol replacement really did help. I am hopeful that armed with all of this information, I can help my Caity dispel the fear of taking this hydrocortisone.

She was also treated by Dr. J--I am sure you mean the big guy!! :-) She totally loves and respects him, and he has gone above and beyond in helping us every step of this Lyme journey. He is an amazing man!

Again, thank you! And God bless you. I also know that our God and Savior Jesus Christ has been there in so many ways through this journey--He has shown up in so many ways. Though this has been painful, there are too many blessings and silver linings to list. I know that your sharing has been a blessing and help to many!

~~Joni
Posted 5/4/2015 2:42 AM (GMT 0)
treehouseman,

I certainly remember you since Caity's name has been mentioned. I also remember reading her website. I confess that I sometimes forget about some of the forum members because I have spoken to so many parents with sick children over the last few years, but i do remember you and Caity.

Yes, Heather was treated by Dr. J.- the big guy. Heather feels the same way about Dr. J. as does your Caity. I also agree that he is an amazing man!

I also agree that our God and Savior Jesus Christ has been faithfully with us on the whole journey! It has certainly been a spiritual journey as much as a healthcare journey!

We will pray that Caity's fears relax about the hydrocortisone. Thanks for the compliments. Its great to hear that some of our members have benefited. Heather has been doing so well that I feel that I have a moral obligation to help others where I can. We will be rooting for her again!

Don
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