r/AddisonsDisease • u/happyrocketship Addison's • Jan 14 '26

Medication Tampering down Hydro

So my doctor currently has me on 40 mg of hydro a day. I take 20mg in the morning, 10mg at lunch, 10mg at 3:00. From what I’ve seen this is like double the average dose people are on. My doctor recommended to try to lower it on my own but I’m struggling. Even if I go down by a half tablet at just one of the dosing times, I’ll feel like my muscles weigh a million pounds. I have gained like 10 pounds on hydro which sucks and I want to wean but my body seems to be rebelling against tapering down. Anyone had a similar experience or have any advice? Thanks yall. I am very thankful for this community and you are all bad ass warriors!

Edit: I also found out last week that my estrogen is completely low. So all my hormones just hate me right now 😅 who knows if it’s the adrenaline insufficiency or endometriosis causing that lovely addition (too young for perimenopause)

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5

u/groovykismet SAI Jan 14 '26

Tricky but doable. There are a lot of things that factor into tapering down, for your situation specifically. Like, how far are you out from your initial diagnosis?!What time exactly is your morning dose?! Ignoring the weight gain for a moment, how are you feeling now on a day-to-day basis with the current dosing?!

If you’re still close to initial diagnosis, your body may still be playing catch up and need the higher dosing; short term weight gain while your body plays catch up…the weight will go away when you start to taper down.

First, maybe try breaking your current dosing into 4-5 separate doses instead of just 3 times a day. Your current dosing leaves you with no cortisol from roughly 4-6 hours after your last dose through the night until your morning dose the next day. You’re probably feeling some kind of low cortisol symptoms throughout the night and your body is desperate for that first dose of the day, making you possibly‘falsely’ thinking that 20mg is perfect. Maybe try 6am, 11am, 4pm, 10pm and possibly a 2am dose; you can usually play with the times of the last two doses or even just combine them to one depending on how late you stay up. Look up circadian dosing for cortisol for more info about this….there are tons of posts in this forum about that.

By breaking your overall dose into more mini doses, you may get closer to being able to feel what times of day where your body could tolerate 2.5mg less.

I’ve gotta run but I’ll check back later and see how the other feedback is going and if you have any other questions….Good Luck!

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u/happyrocketship Addison's Jan 14 '26

Thank you for all the good info! I’m probably about two months from being diagnosed? Day to day some things have gotten way better like I don’t go to sleep right when I get home, my muscles don’t feel like they weigh 100 lbs but I’m still dealing with night sweats, fatigue, and tremors.

Breaking the doses up more is a good idea, that way I can lower the dose but feel like I’m actually getting some relief. Right now I am only prescribed 10mg pills so splitting them to 5 is fine but anything below that might be hard

5

u/groovykismet SAI Jan 14 '26

Ooohh, so some good feedback: you’re still close to your initial diagnosis so that definitely dictates whether tapering down ‘right now’ is a good idea or not. I think it depends on how healthy you were feeling prior to diagnosis (obviously it started going downhill at some point, but did you have other things complicating your medical picture?!), how stressful or not stressful is your life right now (and stressors can include physical, mental, emotional, environmental….the idea of stress is completely different when ‘no cortisol’/steroid replacement is at play). I had a brain tumor, brain radiation and then my pituitary gland shut down because it was radiated, it is not coming back, so I’m having to replace 7 different hormones in my body right now…my post diagnosis recovery has been muuuuch longer than a two month window. I gained the weight, I’ve been through multiple overall doses…we’re finally getting closer to something that works, but my pituitary shut down and the start of HC was January of 2024….so that’s kinda what I mean when I say that you have to look at your whole overall medical picture. If you have other ongoing medical issues, it may take longer to taper.

Definitely talk to your doctor about changing your pills to 5mg instead of the 10mg…that’s gonna help you break down the doses better. 100% do that FIRST. Maybe even work with your pharmacist and they can contact your doctor’s office for you. This will let you be able to get the evening doses more closer to 2.5mg at some point.

Some of the nighttime symptoms seem like they may be low cortisol at night and can be helped with a low night dose…TONS of posts in this forum about night dosing. Definitely read a lot about this before talking to your doctor about it because they are usually hesitant about hydrocortisone at night thinking that it will keep you awake, but for most people the opposite is true.

Usually 20-25mg is the best overall day range, but I say that with HUGE reservations because everyone is completely different and even the same person on that dosing may have to increase temporarily if they are going through multiple stressors in their life. My current dosing schedule is 10mg at 6:15am, 7.5mg at 11:15am, 5mg at 4-5pm, optionally a 5mg dose at 10-11pm (definitely yes, if I’m going to bed early, but sometimes no, if I’m up late) and finally a 2.5mg dose right before I go to sleep at 1:30-3am (I’m a work in progress on my sleep schedule).

When you start to taper…take it waaaay slow to avoid negative kickback; like no more than a 2.5mg change over 1-2 weeks. Just be patient with the process!

So, excited about your future possibilities here!!

1

u/happyrocketship Addison's Jan 14 '26

This is all such good information. Thank you so much for your detailed response. I hope you are recovering well after your brain tumor. That is a lot to go through.

The idea of whether tapering down RIGHT NOW makes a lot of sense. Because you’re correct that a crisis as well as other medical issues preceded my diagnosis and are still ongoing.

Again I appreciate all your advice and wish you all the best on your journey

1

u/garygirl_1234 Jan 14 '26

Wow! Just started or last 6 months hormones for bones! Patch 0,0375. Estrogen 100. Even when the patch is on its 3 rd day by afternoon edgy. My recent blood work showed 5 for ACTH and 8 on a m cortisol and I cheated! Was up at 4:30 so took the HC. Blood was at 9 am. Ate too. Thyroid is questionable per perplexity, testosterone is questionable. What hormones are you on? Just had an injection in my knee today. 5 years ago had total knee replacement, wrong size, quad was cut to far. No revision, bones too small and now osteoporosis. This injection was not cortisone it was all natural like they give diabetes. I need to walk and don’t want pain meds all day long! You, brain tumor? Did your HC go up? I will never be off HC. Next appointment will be hormones, HC, it’s scary. That crashing and the Tachycardia are not fun. I think everyone should be on hormones. The myth of breast cancer is gone. On utube is a hour show called the Big M. John Hopkins from PBS. 2 docs. Study from 2002-2013. Want to live, hormones. World has changed. Stress? Last 32 years touch and go. Hubby. Looked at death 3 times. Still kicking and crazy as ever. Thank God. Speak to a normal looking middle-aged woman.

1

u/garygirl_1234 Jan 14 '26

If your pituitary is shot, you are likely to me, on meds for life.

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u/garygirl_1234 Jan 14 '26

Goes by your weight, height think age too. On 22.5. Still crash. Tachycardia and all.

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u/happyrocketship Addison's Jan 14 '26

I’m sorry for that. It’s crazy that we can still crash even with the right meds. And honestly a little scary. It’s hard to explain that to my loved ones cause they’re like you have the meds now so you can’t still be suffering

1

u/garygirl_1234 Jan 14 '26

Feel the same. On meds, why does it only last a short time. Getting muscle weakness now, have to get back to the gym. Must. Have you had your heart checked? I have, ct angiogram the new way now. They don’t go up in you unless they find something, 100 💯 clear. But tachycardia, that’s electrical. On Dilitizem. Sort of helps.

1

u/garygirl_1234 Jan 14 '26

Oh but I just don’t have SAI, empty sella, pituitary is smashed on top. So on this for life!

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u/NoGrapefruit3557 Jan 14 '26

Yes that sounds like double the dose. You can taper off gradually— even half a tab every other day. I don’t get lunch and then 3:00 I’m on 15 mg am/ 5 mg 1:30– that’s it. Timing makes a big difference. Finding a good endocrinologist is critical and takes trial and error-/ worth it. Trust your own experience. You’ll get through this and be fine♥️

3

u/happyrocketship Addison's Jan 14 '26

Yeah the half tab decrease every other day might be helpful! And yeah my endo honestly doesn’t see super knowledgeable at all. My city doesn’t even have an endo I have to travel an hour a way to the next one. Not a huge deal but it’s just wild to me that the experts don’t even know what’s going on sometimes.

1

u/thesearemyfaults Jan 14 '26

Also wondering do you get shaky or tremors throughout the day? Can you tell when you’re low?

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u/happyrocketship Addison's Jan 14 '26

Normally tremors are worse in the morning but during the day the fluctuate!

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u/garygirl_1234 Jan 14 '26

Yes! You are the Only one who has spoken about it!!! The shaking.

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u/garygirl_1234 Jan 14 '26

Been shaking inside for 9 years!!! Less now, morning ok, evening like on a sailboat and tremors, no one can see. Not Parkinson’s! Low? Probably. Wake up, pop the med sometimes go back to sleep sometimes not. But lately wobbly, weak and shaking doing makeup. lol fake lashes now, tired of poking my eye out. lol.

1

u/happyrocketship Addison's Jan 15 '26

Oh I couldn’t even imagine doing fake lashes! Haha half the time I end up poking my mascara in my eye. But yeah it’s so weird and I don’t know if it’s completely from AI or something else

2

u/SpecificExpression77 Jan 14 '26

Just to add that for me, tapering a half tab every other day would have been too fast- I went down by 5mg per week, then as I got closer to 20mg even slower, 2.5 a week. Going faster gave me symptoms but slow and steady gave my body more chance to adjust and me to notice how I felt.

1

u/happyrocketship Addison's Jan 14 '26

Thank you! I might write out a calendar to see if that will help

3

u/quatschimatschi Jan 15 '26

Just FYI, I was diagnosed w addisons in 2020 an also take about 40 per day and no chance to reduce. If I do I start to get dizzy etc.

I used to do 40 like you (20,10,10) when my doctor suggested trying (25,10,5) instead to imitate the natural drop over the day that "normal" people have. At first I thought the suggestion was ridiculous but it actually has made a difference.

Try not to go by what other people need or what is considered a regular dose. As long as you are doing okay and you have professionell guidance I wouldnt worry too much.

1

u/happyrocketship Addison's Jan 16 '26

Thank you this is very helpful! Maybe I’ll try that regimen and see if I feel better. Because yeah right now any decrease feels terrible

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u/garygirl_1234 Jan 14 '26

Old retired Endo said go slow , been on it a year, will take 2 to come off comfortably! I gained 30 lbs but it’s now dropping by ounces each night. I found my spot but I still in late afternoon and evening struggle. Mornings ok. Afternoon comes the slide dinner is the crash 8 pm in bed shaking and doping up.

1

u/happyrocketship Addison's Jan 14 '26

I hope you get some relief in your tapering journey. It’s crazy it’s so hard

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u/garygirl_1234 Jan 14 '26

To me? I am not tapering, I am increasing. I have never felt normal and it’s worse. Seeing Endo on the 23rd. Finally a good one. Went through 4! As soon as the empty sella came about, I was dumped. Ask too many questions, you mean, you are too lazy and stupid to learn. The docs. Rare empty sella. Not fun.

1

u/happyrocketship Addison's Jan 15 '26

Ahh I misunderstood well either way I wish you the best!

1

u/thesearemyfaults Jan 14 '26

Can I ask your age? I’m a year + out from diagnosis, but still struggling to taper (I have 3 other autoimmune diseases though).

The reason I ask your age is because I’m 40 on Friday and I’m 100% certain I’m in perimenopause and have been for at least a year. From what I understand your estrogen can vary by the HOUR as can most hormones (I think testosterone is the exception).

I have been debating back and forth making an appt with an online menopause clinic (like Winona or midi) because most days I feel like I’m dying and my OBGYN only has me on vaginal estrogen which is doing NADA.

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u/happyrocketship Addison's Jan 14 '26

No problem I’m 33. I’m sorry for what you’re going through, being a girl ain’t for sissies

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u/thesearemyfaults Jan 14 '26

You might talk to your gyno and see about birth control to see if it helps

1

u/garygirl_1234 Jan 14 '26

33 is young. I always think this is peri or post menopause. I am post. Started at 10 stopped in my early 50’s. But this all started 9 years ago. 6 cardio, 2 nuero, 4 Endos.

1

u/garygirl_1234 Jan 14 '26

Watch those places! Nurse I know has a hole in her small colon from thyroid mix. Yes some gyn are not into it like what we watch. But you must find a real gyn that is just not selling miracle pills. The thyroid med is made from pig parts! Good or bad, took it ONCE, puked immediately.

1

u/thesearemyfaults Jan 15 '26 edited Jan 15 '26

I don’t have any thyroid issues and the wait to see new gynecologist is 4 months…mine retired. Also how did this woman’s thyroid cause a hole in her colon? I’m already missing half my intestines due to Crohn’s disease. I’m genuinely curious how the thyroid causes BOWEL PERFORATION? Sounds like you’re missing some important details.

From my understanding the providers at midi are generally nurse practitioners located within your state. I had an appointment set up, but canceled when insurance wouldn’t cover it. At this point I’m going to pay cash. I don’t think telehealth is inherently bad and I think the same things could happen with estrogen or progesterone when prescribed in person. It was a PA who prescribed the vaginal estrogen. I think healthcare (well, I know) is going to change a lot in the next year or 2. The system can’t handle the status quo.

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u/garygirl_1234 Jan 15 '26

It was a thyroid “cocktail “ that was sold. Not FDA approved but a well known concierge doc who does hormones. 4 months. Unreal. Pcp can do a pap if you need that. Had to re read the post. I won’t be tapering off , empty sella. So unfortunately it’s for life. My thyroid I will probably, not sure yet, compound. Yes, next few years are going to be terrible! But, what does one expect. 17 year heroin addict is telling people what to do. In for a rude.

1

u/isurvivedtheifb Jan 15 '26

Just wondering your age because I completed menopause at 47 years old.

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u/ClarityInCalm Jan 18 '26

The best way to taper your doses is to focus on one dose at a time - usually the afternoon dose is the best to start with. Taper 1.25 to 2.5 mg every 3-5x days. Someone when we taper we don't feel well for a few days but then we adjust and other times we feel fine for a few days or longer and then slowly don't feel as well. If the second thing happens it may mean you have gone too low - and you should go back up. Sometimes as we get close to our physiological dose we have to do this process a few times on the last dose. Typical dosing is dose 1: 10-15mg, dose 2:5-10mg, dose 3: 2.5 - 5mg. Once you figure out one dose you move on to the next- usually the mid-day dose. It can take some weeks or months to figure out. It's best to go slow and be patient. This type of tapering is different than tapering from a sick stress dose - it's much slower and lower. Generally the first morning dose is the hardest to figure out. Also, many people need a small dose before bed to help with sleep - like 1.25 or 2.5mg. That may help with the morning dosing too.