Good luck with the appointment and keep us posted!!! I hope you can wean off the steroids.
Before and immediately after surgery my sodium was low. Now my sodium levels are fine. I had my sodium levels checked twice since leaving the hospital and Today I'm going to California to see my Surgeon and hormone doctor for a checkup. I should get the sodium results back then. I think it will be fine considering I'm paying attention to what I take in and what comes out. Me urine is the straw color like it's supposed to be. So hopefully it's ok. I really am hoping I can get off of the thyroid and steroid medication I'm on. I hope I don't have to take it for life and If I do it's out of my hands. I feel good, the on'y real problem I'm having is facial flushing and sweating (maybe a hot flash?) I know my estrogen and progesterone before surgery was so low the blood work couldn't pick it up and because I just had surgery they will not give me medicine for that because fear of a blod clot. I'm sure later on they will put me on something to regulate my estrogen and projection. Keeping my fingers crossed. I live in Vegas and I'm heading out now to California appointments tomorrow I'll be back Tuesday night.
DI = diabetes insipides where your ADH (anti-diuretic hormone or vasopressen) is not regulated and you tend to get very thirsty and pee a lot. It can be temporary or permanent after surgery.
SIADH is "Syndrome Of Inappropriate Antidiuretic Hormone" and can lead to really wonked out sodium very quickly, so one has to act quickly. SIADH is more serious than DI - but both have to be controlled.
So with low sodium and clear pee - it sounded like your electrolytes were being washed out but one or the other. I have another disorder entirely and I have to be careful that my sodium does not drop as that can be serious.
With elevated prolactin, your endo should not be watching, but testing. Find another. You have symptoms - don't wait but get more testing and try to find someone to get you an MRI. My prolactin was barely elevated and I still had a prolactinoma. It can still be caused by thyroid and tons of over things, but they have to find the reason, not just *wait* - quality of life means something.
Find an eye doc too.
AMR - did you have DI or SIADH?
Do you think you could have a pituitary tumor?
Oh ya I also had to stay in the hospital longer because I was retaining water, my sodium was extremely low. Is your pee clear?, yellow? PLease get your sodium levels checked I'm not a doctor but it sounds like you may have a pituitary tumor.
Get a MRI, I had a similar problem. I was told it could be a pituitary tumor but probably not. One day i had a extreme headache and vision loss. Went to the hospital and I had a Very large pituitary tumor that had a stroke. I had emergency surgery 1 month ago my vision is back to normal. This is not to scare you, but it's better to know you have it before you get to the point where it's a medical emergency. It's a highly successful surgery when done by a hospital/surgeon that specializes in it. I went to UCLA ranked 5th in the world. Your pituitary gland controls all your hormones and your symptoms could indicate a tumor.
Hi,
I was diagnosed with a pituitary tumour 0.8mm in Dec '12, my prolactin was high and cortisol low, I have had a crippling headache almost constantly for 8 months, periphial vision problems, mood changes, exhaustion, no energy, insomnia and unrestful sleep, general pain, neck, shoulders, skull, arms, hands, chest all have soreness to the point that I have to stay in bed, I also suffer from chronic ear pain and acute vertigo, have reached the end of the road with ENT, after a botched journey in terms of mistakes and mishaps caused by poor handling of my case..saw Endocrinologist 2 weeks ago and she said that doing nothing is the best option! She said my symptoms are unconnected, I won't accept this as I feel the headaches (horrendous) and vision problems are very much to do with it. She was largely unsympathetic and I feel very doubtful of her recommendations and have no confidence in her. My ENT specialist has been very sympathetic and has referred me to rheumatology and to see a pain specialist. It is thought by my gp that the underlying condition is fybromyalgia, I tick every box for it, it has been mentioned a few times. All the bloods that were done at the request of the endocrinologist three weeks ago hadn't even been sent to my gp, I had to physically go and collect them and drive them to my gp's practice!! The endocrinologist wanted to put me on thyroxin, my thyroid was very slightly underactive but never has been before, my doctor wants to wait. I just wondered if anyone else has had such confusion in dealing with this? I feel like no-one is taking me seriously and a lot of time has been wasted :-(
ACTH triggers cortisol - that is the loop. TSH triggers the thyroid etc. However usually in primary adrenal issues, ACTH is high and cortisol is low as the pituitary senses the cortisol/adrenal is not working and bombards the adrenal to try to make it work. Same with TSH.
I have heard of childbirth damaging the pit (it is called Sheehan's syndrome) and trauma etc. but now if he suspects the colon, then he needs to send you on to a pituitary specialist.
BTW - "pituitary insufficiency" does not exist - it is called hypopituitary or panhypopituitary. I am panhypopit.
He called last night, so I didn't get the note in time to ask...but will next week.
So he thinks I have Pituitary Insuffiency maybe....he thinks my adrenal probably works right, but is not being triggered by the ACTH correctly, as the TSH not triggering the thryoid....so that is why my T4 remains low. He says the thyroid test and the ACTH stim will tell him if the issues are the glands themselves or the pituitary is partially dysfunction maybe from the bad colon hemmoraging years ago and maybe depriving the pituitary of blood.
ACTH is easily botched - so that test can be done wrong. The problem is that you gained weight - and that points more to high cortisol, not low - and to add steroids to that mix is to add fuel to a fire. High blood pressure also is high, not low cortisol. This is not 100% but few people I know with low cortisol have high blood pressure. Only those on replacement are heavy.
You need a stimulation test - but you really need more testing. Even if the doc suspects low cortisol he should do aldosterone, renin, dhea sulfate, aldrenal antibodies to see what is going on. I would also ask for more pituitary testing as well to be sure.
All I know is i was not great on Armour...but better than now...I just want to sleep continually and am gaining a half pound a day pretty much on a strict low carb diet.
I am on no medication currently as they stopped the Armour 6 weeks ago...I also have 5 thyroid nodes.
I believe he is now looking at a radioactive iodine scan and potentially a ACTH Stim test
Here are the current numbers
TSH 0.16 [0.5 - 5.0] Low
T4 0.5 [0.8 - 1.8] Low
T3 3.4 [0.7 - 4.5] Normal
Thyroid Antibodies None
Adrenal Numbers
Cortisol AM 6.0 [6.0 - 19.0] Borderline/Low
Cortisol 24 Urine 15 [10 - 50] Borderline Low
Putitary
ACTH - Not sure of number...Dr said lowest score on the "normal range"
LH - Normal
Estrogen Normal
IGF -1 Normal
Ah... the doc put you on long acting steroid on the basis of one test at one time? He needs to be reported.
TSH is suppressed normally by HIGH cortisol. The cortisol can be low in the morning due to loss of diurnal rhythm - so a test at one time of day would not show the loss of diurnal rhythm. Nor did the doc do a stim test to show that the adrenals were not working (which is what a doctor SHOULD do if the adrenals are not working). You said your ACTH was low - but was it done properly - chilled EDTA tube, spun immediately, frozen promptly (did the lab tech put the tube in the bin? if so, the result was low due to handling, not you).
Your thyroid testing is also dismal - TSH, T4 ? - no T3 no frees, no antibodies... did he do an FNA since you have so many nodules?
I would do to another endo - take the testing you have is dismal and this guy is just shooting in the dark.