I'm increasing my HC dose

[Maureen]

Hi All, After weeks and weeks and weeks of not feeling well, mostly fatigue and weakness I have decided to increase my HC from 20mg to 22.5mg daily to see if I improve. All my labs came back with flying colors recently, I have been eating better and paying attention to my potassium intake but I just can't get over this fatigue. Since diagnosis, fatigue and weakness have been my biggest enemies, and I am really getting tired of it. I could stay in my bed or on the couch all day but I force myself to move. I have realized that it will never go away but maybe an increase will help some. Right now I have maybe 5 hours a day that I can try to get something done. Last night I was in bed at 8:30 because I was so exhausted and I slept until after 10:00 this morning. I am still in my pajamas at 2:30 and trying to figure out what to make for dinner that won't take too much effort. How do you deal with overwhelming fatigue? How do you keep yourself from spiraling into depression because of it? I talked to Hubby about it the other night, he is so great, and he said that I should be prepared for the fact that it might get worse as I age...yikes! (Jo, I recovered from my flu shot but ended up back where I started... )
Maureen

[jadyn]

Maureen,
I am going through that too and had the same problem this time last year. I could not figure out if it was small cold bugs going around, the weather change, some annual cycle in my body that screams for more HC come winter bah, frustrating.
I found an old notebook with last years labs and in it some notes from my endo telling me to double my dhea for 2 wks and if I was still exhausted to go up from 20HC to 22.5 then 25 if need be. I decided to follow that (HC not the dhea part) again since my next appt is not until Dec and went up to 22.5 yesterday and today--feel a little better.

I also pulled out some crockpot recipes I had to use last year also, there is no way I have the energy to pull off a full meal and tossing a bunch of stuff in a pot in the am and having dinner at the pm works for me. Two nights ago I was tired and trying to wing some spaghetti and meatballs (home made) and ended up with the sleeve of my shirt smoldering for a minute. The the brain fog had just shut off the typical reactions, no burns but trashed the shirt. Not cool and a clear message that I need to adapt to these phases of exhaustion better and faster when they hit.
I do what I can when I can and what cannot get done has to wait.

I work from home so I can just rest when needed, it must be a real battle for people who have to fight through this and do a 9-5 job plus driving. To fight back the blues I have had hulu or netflix in the background playing some comedy-sounds silly but laughing at even the goofy stuff seems to keep me more alert and distracted from what a slug this exhaustion turns us into.

I hope the upped dose works for you and kudos to such a great spouse knowing what is and what may come. Try not to let the spiral suck you down..it can be such a long road back up it.

[NJO]

Maureen, you may just need more HC than 20 mg. THis may well be the move you need to make. I don't think I could make it on 20 but others do just fine. And I fight fatigue all the time. It is so discouraging. I have increased my Levoxyl and think that is helping. It helps my mental apathy quickly and hopefully it will get even better after about a month.

You are under a lot of stress with your mom, too. That is very hard on us. You just may need to take whatever dose it takes to make life easier.

[Maureen]

Thanks Jadyn and Jo! I increased today but feel no better. I will give it a couple of days to see if I improve.
Maureen

[Wanda]

Maureen,

I would increase to 25mg for a couple weeks & if you are just bubbling with energy you could taper to 22.5. 2.5mg would do nothing for me.

I normally take 20mg, but the 3 days I did the painting downstairs I had to increase by 5mg. I had to increase by 5mg today after a very lousy nights sleep & then having to take care of Cole. Not getting enough sleep is so hard on us.

All this out of the ordinary stuff that goes on in our lives is stress & we have to try & be as smart as working adrenals are. It isn't easy!

Hope you are feeling great soon!!

[Joan]

Mo, I have had to settle on 30 mg HC. I tried going down in a very methodical way, and got down to 20, but it is just not worth it to try to stay down there. Even 27.5 didn't quite make it. So... Well, I also have started the DHEA as you know, at 25mg twice a week. Today was the second pill. I go to bed at nine most nights... only staying up if there is something wonderful on TV which almost never happens. I am up early... probably by seven most days, and take 5mg of the morning's dose of HC during my early morning potty break which is about 5AM. Then, the other 10mg when I get up. I also take the thyroid meds at 5AM, then go back to bed. I have a better day when I do this.

Being outdoors in the fresh air really does help. REALLY so. Today I am going to plant two flats of flowers where my veggies were this summer... I have to pull out the tomato vines that are still producing a little bit, but .... well, priorities!

I found an amazing looking pink cabbage plant at the nursery yesterday! It went into a pot on my porch with white and pink snapdragons and dark blue violas. Gorgeous!!! Try flowers. Even in the house, they help. Spend grocery money on them and then eat less! Easy diet.

[Dianne]

...I truly don't think many people can get by and have any kind of real energy on 20 mg....and you seem to have a long standing fatigue issue.....why the low dose and why not go up to 25....stay at that for a month and see how you feel....?? Over-replacement is what will hurt long term, not Adequate....perhaps 20 is just not adequate for you.
I am 5'1 and have always been on 30 with increases for stressful things like long travel, vacations etc....I have no overreplacement symptoms. I have never been able to get below 27 1/2 for maintenance. I am now on a combo of hc and pred and really like it....it cuts my total converted daily dose by 2 mg hc in am and 1 in pm. My energy is better this way......
I just get angry at drs who have the attitude that the least hc one can take....even if it leaves one feeling really not up to par...the better....it is up to us to really find the dose that gives us a decent quality of life......

The depression due to the fatigue issues is hard to deal with.....I still get really down after I have a few days of not being able to do what needs done and then everything gets soooo backed up...and seems to take forever to just catch up.....
I made myself a motown cd of all my favorite upbeat songs...will put it on first thing in the morning if I am dragging and it does cheer me up..
It is wonderful that your husband is so supportive.....!!!
Have you had dhea and testosterone levels done?
Diane

[Maureen]

I am going to take all your advice and go back up to 25mg daily. I was so proud of myself because I got down to 20mg, but if that is part of the reason I feel so bad then the **** with it. I am not the only one suffering with this, my poor Hubby comes home at night and he trys to hide his disappointment that I have had a bad day...he so wants me to feel good. Dianne, 30mg a day sounds so tempting....better than chocolate! Wish me luck!!!

[Dav]

I felt the best in years while taking 30mg HC after diagnosis. I hate the day to day fatigue while trying out different doses. I felt fantastic yesterday morning, but at work by 12.30pm I felt the fatigue hit and then struggled through the rest of the day. Am still on the 22mg HC since upping my fludro this week to 150mcg, as per my endo's instructions. Giving it a few more days to see if I pick up, before I increase to 26mg HC.

[okie]

25 mg in the morning,12.5mg in the evening is what I took for about 9 years.
The last 1-1/2 I cut back to 25 am,none pm.
They first few years I would have not made it on 20mg.

Best of luck!

Jon

[NJO]

Jon, do you take HC or cortisone acetate? I remember someone took cortisone...the strength is a little different isn't it? Does anyone know? Not too many use it now.

I try to make it on 25 mg. but a good many days I take more, at least 2.5 -5 mg. extra. It takes nothing to cause me to need more.

[Rebecca]

Last spring I was sooooo tired of hitting the wall in the early afternoon. I was taking 27.5 mgHC. I decided to try prednisone. I don't have many drops in energy anymore. It was getting soooo hard to think at work. I would sit in those afternoon meetings thinking that I was going to drift off to sleep or "Could you please repeat that???" I was feeling soooo stupid. I now take 7 mg of pred. (5 a.m. and 2mg in the afternoon.) That is the equivatlent of 28mg of HC. I had been very stubborn about making changes but wish I had done that long ago. It's o.k. to try new doses. I'm convinced that I'll always be tired easily but I need to get through the work day for 9 more years.

Rebecca

[okie]

NJO,I take acetate. There is a difference but I dont know exactly what it is.

Rebecca,Keep that chin up!
How long have you been diagnosed?
I had quite a bit of weakness the first few years but it has passed.
The last 6 or so years I have only been sick once and have the energy I did at 20.
I kept a positive attitude and think that is sooo important.

[Rebecca]

I was diagnosed 5 1/2 years ago. My life style has changed dramatically since then so everything has been an adjustment. I had been home with my kids but when they went to college, I went to college for a degree that would get me a job. I graduated last year and now work to pay for all the tuition. The hard part is not being able to take a break when I need more rest. My husband is good about helping when he can but he works long hours with a long commute. I am thankful that I have far more good days than bad, compared to so many on this board. I guess my main point in this string of posts is that I have been very stubborn about changing my dosage because I'm soooo afraid of long term side effects of steroids. But quality of life is important too, as Diane says. So I did, finally play with the dosage and type of steroid and it has been a good change. If you are having a hard time on 20mg of HC then it is worth trying some type of change.

Rebecca

[Dianne]

BTW...30 mg hc is Not a Big dose....it is the top range of what is considered adequate so if someone needs 30 to function and feel ok then 30 is fine.
D