I keep hearing that 20-30 mgs of HC is the standarad dosage for most people---but that a few people need as much as 35-40 mgs. I have come to the conclusion that I am one of those people who needs more HC. I was discussing it with my GI/internist. He agreed that it did not sound like I was being treated adequately. I have developed such a problem with eosinophils in my esophagus--AI can cause increased eosinophils. I have next to no appetite, which can also be an AI symptom. I still have a tremendous amount of fatigue.
Also, when i had my last testing done, I didn't take my HC the day of testing, My cortisol came back very low, as would be expected while on HC----but, my ACTH came back low-normal. It should have been suppressed also, while taking HC. My GI felt that my ACTH was high because it was trying to get my body to produce more cortisol.
Also, I still will wake up occasionally and get a sharp stabbing pain in my gut with the first deep breath i take---stomach pain is another symptom of AI.
I have increased my HC to 35-40 mgs a day and find that I am feeling better. I haven't talked to my doctor about it. I also have kind of played around with how much to take at what time of day, so I'm not exactly sure what days I have had 35 and what days I have had 40----I just know I seem to feel a little better.
Does anyone take higher than 30 mgs of HC? is anyone on prednisone instead of HC? I have been told that sometimes prednisone works better for people because it lasts longer in the body.
People can vary... In general those that take more have other issues and need more to account for the other diseases.
Just keep in mind fatigue is a symptom of low and high cortisol. So you can take more and get the wired feeling from more - but it can lead to more hidden side effects. I had no appetite when I had Cushing's - but I gained a tremendous amount of weight. The overlap in symptoms makes it difficult so just be careful.
Pred is longer - and has more of those hidden long term side effects and is not bio-identical like HC, but an option if you find you need higher doses.
I have never felt like the HC was working until I raised it this last week. i am feeling a little better physically--not back to normal---but I think that "back to normal" is an unrealistic idea. I need to fing a new normal that works for me.
I have never felt like HC has given me any side effects, I just didn't feel like it was making any difference.
I have a little more energy, and I am taking less pain medication.
I am just wondering if it is foolish for me to experiment with my HC like this for a little while. I am going to try and keep notes as to how much I am taking and how I feel, so i have something to show a doctor when I see one.
I still haven't managed to get a lot of drive to do much of anything, but at least I am not feeling so depressed, either.
I don't think it foolish for you to play around with the total HC you take per day by changing the dose times if that works for you.
I DO think it foolish to raise or lower the amount of HC you take without first consulting a TRUSTED/COMPETENT physician.
As to feeling depressed... have you checked your Vitamin D levels? When I was on HC, early on I felt down and checked my Vit D only to find it was very low. I was put on a high (5,000 IU/day) dose for one mth then 2,000 pretty IU/day for 2 mths And I felt GREAT. I am now on 1,000IU/day and feel good.
My Gi/internist felt like I was undertreated for my AI. We discussed the various things that pointed to it being undertreated.
My Vit D levels had been really low---I was on 10000 iu for probably 5 months---once it got to a good level, my doc dropped it down to 1000 IU daily--but it did not help my depression.
Against what my doctor thought, I went ahead and went on an antidepressant, which has been helping me. But, when i decided to try upping my HC to 35-40 mgs---I noticed a definite improvement in how I felt. I have been trying to stick with 35 mgs daily---which is only 5 more than what I have been on.
This is the first time I have felt like taking HC has made any difference in how I feel.
I have also been up dosing for times when i have to exert a lot of extra energy.
I know that is what my body would be doing if it was working normally, so I am trying to learn to "listen" to how I feel and dose accordingly---but staying close to 35 mgs.
I'm one of those people that requires a lot of HC also. I'm taking 45 mgs right now in order to tolerate my thyroid med. I'm not happy about taking that high of a dose daily, but if I don't I can't keep raising my Armour thyroid. I have gained a lot of weight since starting HC.
My doctor doesn't have much concern for taking 45 mgs, he says I can even go higher if I need to. He is a good doctor and is recommended on the thyroid community.
You mentioned that on a higher HC dose you feel better. Great. But don't forget that the objective in the medium term is to wean off HC as HC has the effect of suppressing your boy's production of cortisol. The greater the dose them longer you're on it the harder it is to wean off it. That said, if the level you're on helps you to function well then that is great. For a short period of time ideally.
I have hypopituitarism---weaning off will never be an option for me. When I was first put on HC I was told I should start feeling better right away---I never felt better. Then I got pulled off it, then put back on it at a lower dose, which had to be raised as my thyroid was raised.
When i experimented with 35 and 40 mgs for a week or so----that is the first time I have actually felt better from the medication. Then I hit a tough weekend-traveled for two days and then had a weather shift--and was kind of wiped out by it all.
If I'm handling things this poorly, and not able to adjust to the little bumps of every day life, then I'm thinking my baseline HC level is just too low.
I did talk to my doc and he approved me raising it to 35. Thought I ought to let him know what i was doing!!
Ok I hear you. So you may have to stay on HC for a while. A long while possibly. This is not uncommon.
If I were in your shoes (bearing in mind I have no expereince with long term steroid therapy BUT believing that all things considered, the less HC taken the better) I would - a mentioned earlier - play around with the doses taken. While keeping to 35-40 mg per day, maybe take more in the morning some days and less in the afternoon. On other days maybe spread the doses out more eg 8am 11am 2 pm 4 pm 6 pm keep to 35 - 40 mg all up.
The key is to have access to a really good endocrinologist who has the experience you need. Sadly most endos focus on diabetes because that's where the money is.
I am hypopit too and will never wean. In fact, most people with Addison's and AI don't wean off - they may wean down a bit, but the point is to be on a replacement dose for what the body no longer makes.
Yeah, most endos do focus on diabetes - and are no good with anything else. I wonder if they are any good with diabetes myself...
I had one endo that was sharp enough to pick up the problem--but too unorganized to help me enough to feel better. I had a second endo that was just an idiot. i have a doc now that is not an endo, but a thoracic surgeon-turned-holistic MD who studied the endocrine and specializes in balancing it.
He has patients from all over the US--I think a lot have gone to him as a last resort.
I actually think that I metabolize medications faster than some people---I think this is why the normal 20-30 mgs just wasn't cutting it.
We gotta find a decent endo, though--my hubby now has hashimoto's--and he is starting to have trouble getting through the day without getting too tired. We have two recommendations for the same guy---so I think that's where I'm getting him in--I will probably see him also and see what his take is on how I am being treated---besides, it would be good to have a closer doc.
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