I should have mentioned The Endos at the hospital ceased my hydrocortisone the day i was discharged. I have had No hormone replacement at all since discharge, except Desmopressin for Diabetes Insipidus
I would be concerned with those cortisol readings. Did they do an ACTH test?
I know after my pit surgery, I was not cured and they could not come up with a reason. So I just lived with it for a little while (just to keep my job) and then had my adrenals removed as they thought another pit surgery was not a good option.
Is the endo communicating with you at all about his/her theories and what action they plan to take?
I only know of cortisol rising in response to ACTH. I know of ACTH secreting tumors, but I don't know (but I am a layman!) of cortisol secreting tumors except, perhaps on the adrenal gland and adrenal rest tissue. But your adrenals are still there.
Who knows... I know that my inflammatory tests were up when my cortisol was up.
I know this does not make you feel any better, but Cushing's has about a 50% recurrence rate. Mine came back right away too. I had about one month or less of sort of feeling ok, and then it raged on back. It took me 8 months to recover from the pit surgery as I go infections (my Cush just brought my immune system to a halt, so i was constantly sick, and never healed) and my muscles got so weak that I could not walk up hills or do the walking I used to do (like miles in NYC subways etc). I went back to work for a while, then surgery to remove my adrenals, then I could not go back to work as I just got sick all the time, my shoulders froze (both - what a PITA!) for about 2.5 years and I am just a weak, sickly fat thing. I do try to keep my sense of humor though.
Do try to keep your chin up - you are not alone. Do what you can. Read, music, small crafts (I make jewelry like everyone, chainmaille too), go out to the library (I just had to watch hours and not go when tons of kids are there due to the petri dish issues) so you are not isolated. I do find being ill is isolating as friends and family really do not understand. You had surgery why are you not better. It is not relatable.
Post if you are down, and we will try to post. I am having a rough go right now - power issues at home are causing AC to go out, my sodium is tanking and I have not felt well. I have also had to stand and do a bit to get people here and I am so tired so not posting as much. Pain is up (which mean the hubs is not sleeping - I am flipping in bed!).
Yes and i must remember there are people out there worse off than me.
I am sorry you have also had a rough time of things.
I should count myself lucky that i didnt have to wait years to be diagnosed like some people.
I am like you at the moment, cant walk up hills, i cant hold my arms above my head ( cant straighten my hair anymore). My muscles are getting weaker n weaker. Im trying to do as much as i can with out over doing it.
I am doing a cross stitch at the moment and watching little house on the prairie ( i know sad huh !!! lol )
My sisters are taking me out for a girls weekend in 3 weeks just to get away and have some fun :) Something to look forward to.
I still feel down. But its not severe. I cant talk to my partner cos he just says its all in my head ( well it kind of was with the pituitary, but thats not what he meant ). He thought ide just have the surgery and be all ok after !!!
Now that im not hes just like, what next !!!!
I'm going to go do some baking.... not that i eat much these days, but it gives me something to do :)
Thanks for responding Rumpled :) You know it means a lot :). It doesnt take much to make me feel a bit better :)
I can tell you at least in my case, and from what I see in my cushie bud, it does seem to be up and down. Which in turn is also frustrating as it makes planning maddening. But not everyday is where I am a max horrible.
I did get my hair cut very short, and do things to simplify whatever I could. I did some PT, got a shower chair (like old people ugh) and I even have a walker and a cane that I use infrequently now, it just depends on how things go.
Your partner needs to read up - this is long term. Steroid myopathy is real.
All tests completed except MRI which is booked for saturday.
Its an MRI with contrast...i cant remember having contrast with the pre surgery MRI's ( i had 2 pre )
I got my hair cut short too :)
It will always grow back so no biggie and my arms just wont allow me to spend time with my hands above my head...so much easier for now.
I do seem to be able to walk a bit easier at the moment, but it still fatigues me. So im walking when and for as long as i can without pushing it.
My partner mentioned Munchausen Syndrome to me the other day, suggesting maybe im doing something to myself to cause this. My response is How on earth can i cause this??? what on earth can i do ???
He was like, it was just a thought !!!
I was like, well dont think it !!!!
He thinks eating lemons may cause it. I have a lemon squeezed in water each day.
Personally im thinking he has some pretty strange ideas !!!!
Anyway...Just waiting for results and the MRI now. i should be able to get prelim results by friday. Then its only 2 weeks til i see the neuro/ endo again
Im a bit tired ( didnt sleep well last night) and a bit off my food today, got a bit of nausea, but at least my mood has picked up a bit :)
Im thinking ill take my partner in on my next appointments so he can see whats going on for himself
24hr urine / midnight saliva ...results pending ( not completed)
Post dexamethazone cortisol High 889 ( range 119-618). My last result without suppression was 1252, so does this look like it suppressed but just not fully???
ACTH <1 Lol ( range 7.2- 63.3) I would be expecting a less than 1 result with my pituitary gland removed. No ACTH cells left there. Does this result mean no ACTH cells elsewhere. So what else raises cortisol??? if i have no ACTH ?
Fasting glucose has gone up from 4.5 to 11.6 Getting too high again
HA1c is 7.1 still slightly high, but does show better control over the three months than before surgery...it was 8.8 then 7.7 right after surgery now 7.1. My sugars were good for a month and have slowely risen over the last 2 months.
All other hormones are normal cept prolactin which is low 41 ( range 102-496).
Insulin like growth factor 1 is pending
Full blood count normal
LFT has same raised elements / no change in liver function
I am not used to those cortisol ranges... the normal am range has nothing to do with the suppression test as it is, it is a separate number. With that range, I don't know the magic cut off. But as it is still abnormal, I would guess you did not suppress again.
You could have an adrenal tumor?
I had an issue in determining my source... my ACTH was largely normal while I had abnormal cortisol readings - which can point to adrenal source. So it can be confusing to determine source. So not only do you have to determine IF you have Cushing's, you have to determine where it is.
I know more than one person that had pit surgery, then adrenal and then lung!
I had an update at the hospital today...this is where im at now :)
I saw the Neurosurgeon first..... We had a bit of a chit chat lol. he is sooooo nice :)
He told me my test results all point to a pituitary issue except one result which is ambiguous.
He said when they did my surgery it was quite aggressive and they only left 5% to protect the hypothalamus.
He discussed the results with the endo and decided to let them do more tests and we will recheck again in 1 month.
I also spoke to him about having to sit for days with my head in a bowl and the diarrhoea.... he doesnt think its related. he asked several questions and thinks i possibly have a blocked bile duct ( he said my liver function tests also back that up ). He said its outside his expertise and i need to see a general surgeon and he sent a letter to my GP.
Then i saw the endocrinologist.... She isnt as nice doesnt like to chit chat lol, but is nice enough and does her job.
Any way she looked at all the results. My 24 hr urine was still pending, she rang for the results and they still werent done !!! from 3 weeks ago !!!
And they only completed the MN saliva this morning...which was very high, even higher than pre surgery. And i did not suppress on dexa.
She went to have a chat with the head of endocrinology to make sure they are doing whats best for me then came back and......
She pretty much said what the Neuro said....all results point to a pit source...but due to the fact that there is only 5% of pit left they want to have a VERY clear picture of whats going on before they take any drastic steps. She said the Risk rate with the second pit surgery is a lot higher and they dont want to cause any hypothalamus involvement unless absolutely necessary.
The plan is to repeat all tests each month for the next 3 months and i see both the neurosurg and Endo after each lot of testing.
See if there are any trends, changes, if the picture becomes clearer.
Keep a close eye on my Blood pressure, which was quite high today and my Blood glucose, and adapt medication as required... Started back on insulin today.
So thats where i am at.
I certainly dont want to be rushing back to surgery, so im happy to do the 3 months of testing. Ide perfer they have that clear picture, if its possible to get one :)
Now i need some sleep, havnt had much in the last 24hrs, was awake most the night !!! and had to be up early to go to the hospital. :)
That is complex.
I have had a couple of my friends that had the entire pit and stalk removed - of course that means you are panhypopit which is a balancing act of meds.
One guy did get ADH (vasopressin) back after a while when the hypothalamus came and took over. They keep telling me that as they want to radiate my entire pit and clovis and kill it and I am not in favor...
My only advice with the glucose issues is that sometimes low carb or no carb can help a bit. It won't do anything about the cortisol but it can help diminish the damage from the blood sugar. Eat healthy, don't exercise like a crazy person but go easy as your body is under attack. Don't stop but listen to your body - so sorry.
I will be in and out. Waiting to see what is next for me now.
Living with Panhypopituitarism after prolactinoma pituitary tumour
Posted a day ago
Just a quick post for support for any newley diagnosed pituitary tumour patients.
Times may be tough, but be strong and be positive! Im 33 and had a prolactinoma when I was 18, it came back when I was 24 and I then had radiotherapy. My tumour has gone I have no pituitary gland and I take hormone replacements.
Questions I had when I was first diagnosed..
Can I drink alcohol while taking my medication hydrocortisone thyroxine HRT. Yes in moderation! if you drink so much that you are sick, you may need a steriod jab so best not go over board. I dont drink spirits just a couple of glasses of wine now and then.
When do I take extra steriods, I take extra when I have a really stressful or busy day. I take around 20 mg per day and space my dose out through out the day, depending on what Im doing. If Im having a lye in and lazy day I take 15mg, If Im going to the gym I take 2.5mg 15 mins before I go. If Im not due a tablet then I take it as an addition but if my dose is due then I dont take it as an extra.
Can you live a normal life with panhypopituitarism ? Absolutley ! I would 40 hours a week, I exercise, I have a drink now and then, I feel well on a daily basis.
Can I exercise? Yes, take it easy and if you feel light headed dont be afraid to take 2.5mg a (little extra should help.)
Can I have children ? Yes although I personally have weight to loose before I qualify for assisted conception ....Im working on this at the moment doing the 5:2 diet lost 11 lbs but Ive 6 stone to go I will get do it!!!
What is radiotherapy like? Its a bit stressful as you'll need to get a plastic mask moulded for your face and you have to wear it during treatment. I had to go for treatment every day for six weeks. During the treatment I was anxious and worried but I didnt feel anything at all when I was having it done. I lost a tiny amount of hair above my ears which soon grew back.
Will I have regular MRI scans? Yes sure they will monitor you closely to make sure everything is okay after the radiotherapy.
What support might I need? Family and friends can be a great support if you struggle with worry I would recommend seeing a cognetive therapist this really helped me.
Will I have to inject myself with steriods? Ive had this condition for 15 years and Ive never injected myself. My husband and my mam have given me a shot when I was suffering from sickness and diarrhea.
My advice to anyone with a pituitary condition is ...... take one day at a time, be optimistic, let your specialist know if you feel unwell it could be something to do with your medication, be strong! if you struggle with weight issues as I do, remember that you are battling against the odds you can and will loose weight if you try hard enough, if you have to have surgery /radiotherapy ...trust your drs they are amazing at what they do !
BP went up to 217/134...massive headache, blood noses, blurred vision.
So had some fun trying to stabilize that...while i was there also restabilized my blood sugars too, now on Slow and fast acting insulin.
Also had daily cortisol/ ACTH/ 24 hr urine/ Dexa tests
Lots of info for them to go thru now.
They have decided by my Biochemistry that i have two different sources of ACTH/cortisol, i dont quite understand it all yet. But they are going to get the team together, go thru all my results from day 1 and work out a plan.
They are finally also saying not only does my biochem present as cushings but I also am presenting as cushings !!! lol after pit surgery!!!! goodness
I now have a full on buffalo hump, apparently it wasnt there previously. And i dont have abdominal stretch marks but i have them under my arms which ive never noticed before....this all coming from the Hospital endo i saw.
They have also referred me to the Hospital outpatient gastroenterology/ endo surgeon to check on my liver / stomach issues.
That is why I have not had radiation... they don't have a discrete target and the side effects... I am not willing to go there even though the docs "say" they are minimal, everyone I know who has had it, has some issue later on.
Sadly there was a marker to find rest tissue, and they discontinued making it! So all of us with issues after surgery are trying to figure out what to do, and no way to find the tiny lesions that don't show up on normal scans.
I hope they find things for you! Interested to hear what they come up with for investigation.
Still in limbo land ! But at least we have decided NO radiation therapy :)
Cortisol is still high. Doctors are ruling out ANY outside possibilities before deciding on next course of action.
I have a bit more energy now, so im kind of happy to let them take their time now.
New things..... well i had a repeat visual field test as my 3 month post op one showed mild swelling around the optic nerve. This one at 6 months post op now shows ? a small blood clot, bruising or scaring on the optic nerve??? One quarter of my vision in my left eye was missing.
Ive had blurred vision and headaches since my BP went up early august...just thought it was my BP ! Maybe not?
Anyway following the visual field test, they sent me in for an urgent MRI ( it was the most indepth MRI ive ever had !!)
I dont have the results, no one has called to tell me if there was any issues. But then i get an appointment for the neurology clinic ???
I rang to confirm as i was waiting for an appointment with the endocrine clinic, and the neurosurgery clinic had discharged me last visit. Yep, confirmed, apparently the neurosurg doc had referred me to neurology following my recent MRI !!!!
Nice of someone to let me know !!!!
Oh well so im off to the clinic in 2 weeks ( apparently their waiting list is 9 months so he must want me seen soon !!)
I have no idea what it all indicates. Why would i go to neurology instead of neurosurg?
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