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adrenal gland removal hydro cortosone level
I had my adrenal gland removed in \May, was on 20mg in morn and 10mg pm til monday after reduced to 15 and 10 now 10 and 5. i am due to see consultant end of Sept. i feel tired is this cos not enough or too much. also this week I have had a lump removed so was advised to double dose morning before op, since then I have been tired very tearful and stressful. any advice
It must be a very stressful time. I hope you have a lot of support around you and do feel free to pop in here and post when you need to blow of some of that fear. Fear we can understand even if we don't like it. Do make sure to listen to music, read, knit etc. or do whatever you enjoy to keep yourself and your mind busy and that can help a teeny bit.
Hang in there.
Hang in there.
Its good of you to advise!! hope you are feeling better today. I ad a lumber puncture biopsy they said something showed on ct scan and got to go to oncology unit next week!! It could be ca1ncer, or osteoprosis or anything so as you can imagine I,m all over te place! Everytime I talk to any one or they text me I end up in tears!!
Make sure that your doc has enough meds in your script so that you can stress dose as you need and let them know for the biopsy (sorry I was not on yesterday I was out of it).
You CAN know - get a copy of the pathology - simply contact medical record and get a copy or contact the doc office and get a copy for your records. I cannot stress enough how important it is to get records. It may cost you a few bucks, but I always get labs and pathology and MRI reports etc.
My problems are long standing... i just try to help others not become me.
You CAN know - get a copy of the pathology - simply contact medical record and get a copy or contact the doc office and get a copy for your records. I cannot stress enough how important it is to get records. It may cost you a few bucks, but I always get labs and pathology and MRI reports etc.
My problems are long standing... i just try to help others not become me.
thanks, I have got to go into hospital for biopsy tomorrow now, cant understand as had lump removed last week! beginning to feel that I can't take much more!! I was told last week that the lump might be cionnected to cushings so who knows!!
How are you feeling? I.m sorry seem to be going on about my problems and I expect you have enough of your own.
How are you feeling? I.m sorry seem to be going on about my problems and I expect you have enough of your own.
Uh oh... that is not a good sign... that means your ACTH is high even if your testing is not showing it... Fatigue is a huge issue. You will have to work closely with you doc on the wean. Make sure you keep up on fluids and rest - and do try gatorade or the like (sugar free or low sugar) and see if that helps. I use tomato juice to get sodium and potassium.
I am in the USA - New Jersey.
I am in the USA - New Jersey.
I've been told that I look as if I've been in the sun too!! This week since my op has been the worst since my adrenal op!. Today though the weather is neither hot or cold i feel hot and sweaty and so tired. A good friend of mine came and took me out for a coffee which was nice.
Where abouts do you live? I am assuming USA I came across this site while looking for info. Its good to be able to chat! Mind you not sure what the time difference is!!
Where abouts do you live? I am assuming USA I came across this site while looking for info. Its good to be able to chat! Mind you not sure what the time difference is!!
I get that a lot - my disorder gives me a tan so I tend to look healthy with that and people say I look wonderful! I don't feel it though so I want to punch them, but I don't have the arm strength. :)
Look up *invisible disability* and you will see you are not alone.
You can always come here for support - and make sure that you are very very careful with the wean.
Look up *invisible disability* and you will see you are not alone.
You can always come here for support - and make sure that you are very very careful with the wean.
thank you so much for your advice. I think because on the whole I don;t look unwell people dont realise including my husband who has myotonic dystrophy.
I am so sorry to hear about your other health issues! There are other forums here to help and we can also do what we can to assist you.
It depends with the salt. We with adrenal issues cannot hold salt therefore we need more than average. I am not average, so I have to actually take salt tablets daily, salt my food and carry salt tabs with me in case I need them - so I am one extreme. Other people can compensate with adding more to food, or gatorade. If you crave it or your BP goes down, be sure to go for salty food or drink.
As long as you are on replacements, you are sadly immunocompromised - and so take care being those with colds etc. Please know too that the wean off the steroids to wake up your good adrenal is painful. HC is an anti-inflammatory and so as you ease your self down (and do please do this slowly I hope your doc is sensible about this) your body will creak and ache. As it has been 4 months and you have healed and you have other health issues on the horizon, he should start to wean you soon.
My advice, start to cut afternoon doses first by 2.5mg and see how it goes (as in how it feels, that you don't get sick), when you get it down to 5mg move it up to 2pm since you take so late (this is more consistent with a normal body). Then cut your 30mg morning dose by 2.5mg and when (take days or weeks) you get it to 20mg - total of 25mg, zig zag - cut 2.5 out of morning, take full afternoon, take full morning, cut out half of afternoon and see how you do - based on that, cut as you can 2.5 every other day or so and once you get below 20mg total, it will get harder and harder and slower and slower to just take it easy. Try not to go back up much unless you get sick, and work your way down. Depending on how you feel, this can take weeks, or months - or longer. Rest, fluids and that you have people around you that know you only have one adrenal gland is important!
It depends with the salt. We with adrenal issues cannot hold salt therefore we need more than average. I am not average, so I have to actually take salt tablets daily, salt my food and carry salt tabs with me in case I need them - so I am one extreme. Other people can compensate with adding more to food, or gatorade. If you crave it or your BP goes down, be sure to go for salty food or drink.
As long as you are on replacements, you are sadly immunocompromised - and so take care being those with colds etc. Please know too that the wean off the steroids to wake up your good adrenal is painful. HC is an anti-inflammatory and so as you ease your self down (and do please do this slowly I hope your doc is sensible about this) your body will creak and ache. As it has been 4 months and you have healed and you have other health issues on the horizon, he should start to wean you soon.
My advice, start to cut afternoon doses first by 2.5mg and see how it goes (as in how it feels, that you don't get sick), when you get it down to 5mg move it up to 2pm since you take so late (this is more consistent with a normal body). Then cut your 30mg morning dose by 2.5mg and when (take days or weeks) you get it to 20mg - total of 25mg, zig zag - cut 2.5 out of morning, take full afternoon, take full morning, cut out half of afternoon and see how you do - based on that, cut as you can 2.5 every other day or so and once you get below 20mg total, it will get harder and harder and slower and slower to just take it easy. Try not to go back up much unless you get sick, and work your way down. Depending on how you feel, this can take weeks, or months - or longer. Rest, fluids and that you have people around you that know you only have one adrenal gland is important!
Thank you for the information. I had a benign tumor on my adrenal gland. this week I had a melenoma removed from my arm. I have just had a letter from cancer clinic saying I need to attend so everything seems to be happening at the moment. I dont crave salt I thought I had to avoid it??
http://www.medhelp.org/health_pages/Adrenal-Insufficiency/Replacement-Protocol---NADF/show/1276?cid=221
http://www.medhelp.org/health_pages/Adrenal-Insufficiency/Signs-of-Adrenal-Crisis/show/1236?cid=221
http://www.medhelp.org/health_pages/Adrenal-Insufficiency/Stress-Dosing-Guidelines---NADF/show/1269?cid=221
http://www.medhelp.org/health_pages/Adrenal-Insufficiency/Signs-of-Adrenal-Crisis/show/1236?cid=221
http://www.medhelp.org/health_pages/Adrenal-Insufficiency/Stress-Dosing-Guidelines---NADF/show/1269?cid=221
Hello...
I fear the *double before op* may not have been enough... you may be hitting a real low.
I don't have any adrenal glands. I don't know why you had one out - but you have to make sure the other one wakes up - and right now you are taking a dose that completely has the other one asleep so you have to guess at what you need. Unfortunately, tired can mean too much and not enough. Nausea however means not enough.
There are guidelines for surgery - if you had something, say under twighlight, the anesthesia doc should have given you extra - and you should have boosted for a day or two. For a major surgery - like I had a hysterectomy, I got 100mg during the surgery, and 50mg every 8hrs for a few days and then a wean off.
You are also on a dose on the high side IMHO - a lot of people take a total of 20mg. Also most people do not take a PM dose after 2 or 3pm so they can sleep. This is more consistent with imitating how cortisol rises and falls in a normal body. However, if you have other auto-immune diseases, or other things, doses can be even higher.
You may also need salt - do you crave salt? Fluid and salt issues are a problem with adrenal people and so you should make sure your sodium usage is up.
It may also take you longer to heal. Do you have a medic alert bracelet?
I fear the *double before op* may not have been enough... you may be hitting a real low.
I don't have any adrenal glands. I don't know why you had one out - but you have to make sure the other one wakes up - and right now you are taking a dose that completely has the other one asleep so you have to guess at what you need. Unfortunately, tired can mean too much and not enough. Nausea however means not enough.
There are guidelines for surgery - if you had something, say under twighlight, the anesthesia doc should have given you extra - and you should have boosted for a day or two. For a major surgery - like I had a hysterectomy, I got 100mg during the surgery, and 50mg every 8hrs for a few days and then a wean off.
You are also on a dose on the high side IMHO - a lot of people take a total of 20mg. Also most people do not take a PM dose after 2 or 3pm so they can sleep. This is more consistent with imitating how cortisol rises and falls in a normal body. However, if you have other auto-immune diseases, or other things, doses can be even higher.
You may also need salt - do you crave salt? Fluid and salt issues are a problem with adrenal people and so you should make sure your sodium usage is up.
It may also take you longer to heal. Do you have a medic alert bracelet?
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