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Addison's Disease Message Board


Addison's Disease Board Index


Hey you all. I am one of the newest hypoadrenalism sufferers to officially join you all. So now in addition to the Hashimoto's, secondary hypothyroidism, and possible hashimoto's encephalopathy; I get to add Add.. hypoadrenalism. My Cortisol was below range and my ACTH was high as well. My IM didn't say Addison's.. but preferred to call me a adrenal insufficient/hypoadrenalism. ;) Gotta love the MD speak. But given my autoimmune happy body.. I am betting it is.

So my MD told me I need to start Cortisol support by taking 5 mg hydrocortisone 4xdaily. I was also told it will take some tweeking on my part would be required to figure out when and how often to take my pills. The one issue I am worried about is sleep interference. I have sleep apnea and insomnia.. so I would prefer to not add to the insomnia. My sleep is precious and needed, what little I get.

So I am calling all experts out there. How do you time out and schedule your med dosages? I have to balance Gerd, allergy, and thyroid meds with this as well. So this is what I plan on doing.. tell me if it sounds good. Or if I am asking for trouble.

Synthroid at 6:30 am
hydrocortisol 7:30 am
hydrocortisol 11 am
hydrocortisol 3 pm
hydrocortisol 7 pm
vitamin and supplement slurry at 8 pm
antihistamine, decongestant, reflux meds at 10 pm.

It is sad, but I have had to set alarms to remind me to take my meds. Ugh! Who knew having to take supplements to replace your failed endocrine system could get so complex. I am glad I am a bit obsesive about schedules and such. Also do you all take additional supplements to aide in improving your function? If so what kind and scheduling works best for you.

My sincerest thanks in advance to everyone reading and sharing advice.
MG
Finally I can give you some advice. You are always there for me.
The last cortef needs to be taken before five or you will be awake into the wee hours of the night. Been there and done that. I am on 30mg of cortef

Ask your doctor if you can take two of them on one of your doses. Either that or start your synthroid dose earlier.
I take my synthroid and cytomel at 5
Cortef and florinef at 6
Aldoctone at 10:45
Cortef again with cytomel at 12:30
Cortef again at 4:45
Then you do several hours of homework with the kids, cook dinner, go to the gym and you are really tired.............
Trust me you will not have to set the timer long. I am dizzy if I forget Who needs watches

I hope your doctor's appts went well.
KM
You should take your largest dose of Cortef first thing in the morning. So, I would say, take 10 mg. first thing, 5 at noonish, and 5 at 4 or 5 p.m. I'm surprised your doctor didn't recommend this.
I am surprised that doctors do some of the things that they do too.
I tired to go off of one of my cortef dosings, and they told me to just delete the last dose at 5 (10 millagrams!!!!!!!!!!!!!!!!!) I think it may have been you that told me that you only taper 2.5 mg at a time. Boy did I learn the hard way!!!!!!!!!! I was really really sick from that.
Turns out I need the 30 but it was only after I told her about the tapering, and she is supposed to be one of the best there is in the field. That has been my only really bad experience. I get the feeling that thyroid is more of her expertise, but I really need her for that and she has really come through for me.
30mg is a pretty high dose, IMHO. I have no adrenals and I take only 22.5 total. With taking of steroids, it is truly a balancing act and you want to take the minimum possible as too much will damage your muscles, bones, eyes - well, your body.
I take 15mg in the morning, 5mg at 1pm and 2.5 at 4pm. HC has a half life of roughly 6-8 hours. I agree that taking it late will keep you up. A normal body will produce it highest amount and peak at roughly 8am, fall to roughly half that at late afternoon, and fall to near zero at midnight - which is why people time their doses to correspond to that. A lot of my friends take 15mg at 8am and then 5mg at 3 or 4pm. I take a wee bit more as my ACTH is high and I am trying to suppress it.
I has my adrenals removed due to Cushing's and it destroyed my body - so please be careful with steroids. The damage is insidious.
So that is why I was running up walls and doing laundry til almost 2 am... Thanks guys. I noticed this morning I was cold. Had to pull out the jacket and wear it indoor again. After about 4 hours and my thyroid meds were at max.. I warmed up.

I think I will go with the 5 mg as a morning dose then my 2 - 5 mg closer together in the morning. I did get alot of chores done last night.. now if I can disconnect the buzzer on the dryer my son and hubby wouold be much happier. Time to do some engineering.

I will be holding on the 5 mg 4x a day for four weeks. My levels will be checked again. Then I will adjust or hold and go back for another recheck in 4 weeks. My IM is on top of this. She says the first three months will be the most telling.

The one thing I have noticed is my thyroid is aching again. It had stopped for the most part. Now I have the constant ache on the right side where I have a single nodule. Does taking cortef make any of your thyroids ache? It may be that I am getting in balance finally and my thyroid is getting pinged to make more T4 again. Whee! I have had two days with out a nap and am doing fine. My knees are still popping and creaking. But the back, hips, wrists, and ankles are a little better. I played soccer with my son today and a lot of walking.. so we shall see how things go. Thanks for all the advice. My MD wanted to send me to an Endo, but couldn't think of one good with thhyroids within 2 hours of me.. so we are working together. As a result I thought I would ask the experts. ;)

MG
The hyperactive feeling will go away after a few days. When I first started and everytime they adjust me, I feel like I could mow all the lawns on the block. It is short lived.

I have never had thyroid problems with this. I only have half, so I just fight the fatigue and keeping the medicine regulated.
:D Still up. Happy Easter everyone. I can tell I am not as fatigued, but it is going to take balance and twweeking to work out my thyroid issues and this adrenal mess. I am looking forward to feeling balanced and normal once again. *sigh* Why does it have to take so long? Anyone got a magic pill or wand that works? :D Okay, I will be patient.

MG
Try to be very patient because unfortunately this process can take a while.
You can often feel better and have energy for a week or so and then Bam the symptoms return and then they have to adjust your dosage.
It does GET TONS BETTER. I could not walk from one room to another by myself last November and I was on 37 years old. Of course it was a lovely combo of thyroid and adrenals and regulating the medicine. It was truly awful, and today I am me again. For the most part.
I can exercise 4 times a week instensly and I am back at work, and my kids poop out before I do. There is hope. Just have patience and perserverence.

KM:D
Well I am there with you. Thyroid and adrenals.. I am 32. These issues have been getting worse since I was 27-28. I wish MDs took you more seriously and looked a bit deeper sometimes. How many others that are caught in their 40-50's have been suffering for years in silence. ;) Me? Well I am not the silent type, except for post tonsillectomy. I know my body and know when it is off. I refuse to take.. the wait and see approach. I was literally falling appart physically. Thanks for the advice and hopeful scenario. I hope to be straight in 6 months.. but I could live with a year... if I had too. ;)

I went to sleep about 12:45 am last night. My son cannon balled me at 6:15 am. So I am a bit tired, but I will live. Hope everyone is having a great day. If not share, gripe, whine. It does help to let it out.

MG
Most people start with at least 10mg in the morning and then take 5mg around 2pm and another 5mg around 6 pm.

I started with 20mg in the morning and then 10 in the afternoon. Once I reduced my meds, I took 10mg in the morning and 10mg around 3. This has been my schedule for the longest time and it has worked very well for me.

It sounds like you need the extra boost in the morning.

Betsy
Thanks Betsy.

I will give the 10 - 5 - 5 regime a shot. I do have a new development. I am retaining water. In my feet. Got the puffy fluidized skin poofs last night. They are already here this morning. Do you all have to fight this? If so, how? Any thoughts would be appreciated.

Sincerely,
MG





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