Aa
Hydrocortisone tablets 4 life??? can that be true???
i had Pituitary tumor removed on 05 October 2010. i was told by my neuro surgeon that i would need to take Hydrocortisone for the first 3 months untill all the hormones came back into balance. towards the end of last year i has some tests done which revelaed that the cortisone leveld were low and i need the steriod 2 keep me going... my endo nurse and doctor has told me i need to stay on these tablets all my life. my dose has been reduced from 20mg daily to 10mg. i can feel i am putting on weight, (thats not my biggest concern). will i have to continue on this forever? its stressing me out... ive got my periods back after over 4 years... now trying for a baby, endo nurse tells me i cant come off the meds even if i fall pregnant... i also take levethyroxine 50mg daily. i am due an MRI scan in a few weeks but thats is to be cancelled if i am pregnant....
Are you only under the care of a surgeon endo - or a neuro-endo? I agree that you don't know the type of tumor and that can play a huge factor in replacements post-op. Get a copy of your pathology from the hospital.
You may also need other hormones with your hydrocortisone - florinef, salt, dhea... as well your thyroid may be under-replaced and you may need T3.
Since you want to get pregnant, have you had LH, FSH, PRL and estrogen tested?
You may also need other hormones with your hydrocortisone - florinef, salt, dhea... as well your thyroid may be under-replaced and you may need T3.
Since you want to get pregnant, have you had LH, FSH, PRL and estrogen tested?
Sophiaaa,
It may be necessary to stay on the HC. No one can say for sure. But the advice above is good - test to see what's going on.
A neuroendocrine doctor told me last week that weaning off HC can easily take a year. Never do it fast, too much shock to your body. It's always necessary to taper off gradually.
This is a long haul, not a sprint.
Regards pregnancy, the dose you're taking won't hurt the baby. Quite the opposite. As Mr. Low Cortisol said, 10 mg is a true 'low dose'. Your body puts out about 20 mg itself on a non stressed day. It may create the equivalent of 60 mg on a day you have stress, such as the common cold or infection. So your dose is a true 'natural replacement dose', not the megadoses they use when you're an inpatient at the hospital. They often give up to 200mg per day!
It may be necessary to stay on the HC. No one can say for sure. But the advice above is good - test to see what's going on.
A neuroendocrine doctor told me last week that weaning off HC can easily take a year. Never do it fast, too much shock to your body. It's always necessary to taper off gradually.
This is a long haul, not a sprint.
Regards pregnancy, the dose you're taking won't hurt the baby. Quite the opposite. As Mr. Low Cortisol said, 10 mg is a true 'low dose'. Your body puts out about 20 mg itself on a non stressed day. It may create the equivalent of 60 mg on a day you have stress, such as the common cold or infection. So your dose is a true 'natural replacement dose', not the megadoses they use when you're an inpatient at the hospital. They often give up to 200mg per day!
Hi Sophiaaa,
I had the same tumour removed a year before you in the United States. I can answer a few of yr concerns, but as a male I have nothing to say about pregnancy.
1. Do you know the TYPE of pituitary tumour it was?
2. The general spiel by doctors is that you'll be on hydorcortisone for 3 mths post op. I was told that in my case. And that my hormones should revert to normal after that AND I can get off the hydrocortisone. Guess what? It is 14 mths and I am still on it! You should get a cortisol check (via blood test) every 3 mths to see if the level improves. If it improves to "normal" you can WEAN yrself off it;
3. It is unusual to be on the hydrocortisone for life. But it does happen. Your endo says you will stay on it for life. Ask him why does he/she say that? Is he/she aware of damage done to that pituitary function? In many cases I know of 2 years is typical;
4. If the rule is no MRI must be performed if you are pregnant, may I suggest you wait with the pregnancy. The routine is a MRI 3 mths after the operation and 9 mths after the first MRI. That is 12 mths after the operation. These MRIs will indicate if any bit of the tumour is left in your head. This is my personal opinion: ensuring the surgeons know how successful the operation IS more important than getting pregnant.
4. The 10 mg dose/day is not a lot. I have been on amounts that varied from 40 mg to 2 mg.
5. Get a bone density test ASAP. Your post mentions nothing about this so I bet you have not had one done. The bone density test is VERY important as hydrocortisone destroys bones and if you dont have a scan early on, then say in 1 year's time, you will not know how much damage the drugs created. The test is quick (5-10 mins) and PAINLESS.
6. Weight - I am in the minority as I have NOT put on weight with the drug. Do you drink coffee? I have one in the morning and that suppresses my appetite. Maybe it will supress yours too. Do you snack between meals? Do u have LARGE meals? Please advise. Also what blood type are you?
I look forward to your reply. And let me assure you..you'll get through this. Please do not stress yrself out. Please.
I had the same tumour removed a year before you in the United States. I can answer a few of yr concerns, but as a male I have nothing to say about pregnancy.
1. Do you know the TYPE of pituitary tumour it was?
2. The general spiel by doctors is that you'll be on hydorcortisone for 3 mths post op. I was told that in my case. And that my hormones should revert to normal after that AND I can get off the hydrocortisone. Guess what? It is 14 mths and I am still on it! You should get a cortisol check (via blood test) every 3 mths to see if the level improves. If it improves to "normal" you can WEAN yrself off it;
3. It is unusual to be on the hydrocortisone for life. But it does happen. Your endo says you will stay on it for life. Ask him why does he/she say that? Is he/she aware of damage done to that pituitary function? In many cases I know of 2 years is typical;
4. If the rule is no MRI must be performed if you are pregnant, may I suggest you wait with the pregnancy. The routine is a MRI 3 mths after the operation and 9 mths after the first MRI. That is 12 mths after the operation. These MRIs will indicate if any bit of the tumour is left in your head. This is my personal opinion: ensuring the surgeons know how successful the operation IS more important than getting pregnant.
4. The 10 mg dose/day is not a lot. I have been on amounts that varied from 40 mg to 2 mg.
5. Get a bone density test ASAP. Your post mentions nothing about this so I bet you have not had one done. The bone density test is VERY important as hydrocortisone destroys bones and if you dont have a scan early on, then say in 1 year's time, you will not know how much damage the drugs created. The test is quick (5-10 mins) and PAINLESS.
6. Weight - I am in the minority as I have NOT put on weight with the drug. Do you drink coffee? I have one in the morning and that suppresses my appetite. Maybe it will supress yours too. Do you snack between meals? Do u have LARGE meals? Please advise. Also what blood type are you?
I look forward to your reply. And let me assure you..you'll get through this. Please do not stress yrself out. Please.
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