Pituitary tumour

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I also have an acoustic neuroma and Ménière's disease. I was diagnosed with Addisons but my Endocrinologist has told me today he made a mistake even though 2 stenachthen tests showed high levels of something.....my memory is shot as is my concentration, I'm only 47. He has me on hydrocortisone and now wants me to wean myself off them and take another stenachthen test in 4 weeks. I'm constantly tired, irritable, depressed. I've lost 28lbs in a few weeks and my optic chiasma is being compromised by the pituitary tumour.....I'm so incredibly confused, my joints ache all the time, I even had carpal release surgery and have no life whatsoever. My kids have been great and I have a supportive husband but I'm at the end of the road now. The endocrinologist also suggested I see a psychiatrist even though my bloods are all over the place and my bp has gone from really low to quite high. Any replies would be greatly appreciated x

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11 Replies

  • Posted

    What levels are your Iron Studies?
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    • Posted

      Iron levels are ok. My Endocrinologist said that because the steroids aren't working that it's a 'disaster', I wonder what kind of Dr says that to a patient? . I'm going downhill every day to the point of giving up. 3 hospitalisations for a week at a time and now they tell me it's more complicated than they first thought. My eyesight is declining rapidly and I stay in bed most of the day.
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    • Posted

      At least she/he is honest and not fobbing you off - oops, there is the suggestion of the psychiatrist.  But really that could be to help you cope mentally.  After I had a very dangerous tumour removed, a hospital psychiatrist took me off to her office to talk to me even though I felt I was dealing with it ok.  I had educated myself about it completely and had some input in my treatment.  So, take them up on it and unload about how unhappy you are with the drs incompetence (or whatever you are feeling).  Verbalise that you hope this is not the end of their treatment for you and that you want to know what they are doing to deal with your health issues.  Use it to get some positive outcome for you.

      I am sorry it is such a 'disaster' for you, and I really hope it has a good conclusion.  Be as assertive as you and your husband can be to get good treatment.

       

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    • Posted

      Thanks for the advice, you're correct, I am being sent from pillar to post and in the meantime spending most of my day sleeping. The thought of having a shower and getting cold fills me with dread. I'm also in Recovery and can't get to Meetings because my vision is impaired by the optic chiasma due to the pituitary tumour.
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    • Posted

      I know what you mean about getting cold in a shower.  I suffer from that too and it is so energy draining - it fills me with dread too, and I live in the tropics.  Are you able to be kind to yourself and put a heater into the bathroom?  Not one with a fan - it creates a draft from the Arctic.  Just turning on the shower creates a draft!  Put a towel or draft stopper at the bottom of the door.

      If you have a hand held shower, that is more convenient.  If not, use a bucket of warm water and wash cloth when you are feeling so bad.  Start with the bottom bits and see how you go.  Do you have a shower seat where you can sit down, so you are not worried about losing balance?

      I don't have what you have but I have been so debilitated from complications from haemochromatosis, including a pit gland micro tumour, that I can emphathise with you.  As you are so ill, such equipment is a good investment for your wellbeing.  Get what you can to make your physical challenges easier.

      What hormone/s are being secreted excessively because of your pit gland tumour?  I does not sound like that is being addressed.  Mine was dealt with by medication.  Some have to have surgery to remove it.

       

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    • Posted

      They won't give me the information so I don't actually know. They say I have Addisons Disease with complications, that covers a lot! An autoimmune disease of some type. I feel abandoned by the entire medical community, sent from one specialist to the next and conflicting results. I sleep all the time and it's having such a detrimental effect on my family ...At the end of my tether .
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    • Posted

      I am hearing you.  What sort of turkeys are they?  Your gp should be providing a buffer and interpreting it all for you at least. If they slack off, ask your gp to keep driving them for you.

      How much research have you done yourself?  Being proactive helps.  Wikipedia has a good description, but find what relates to you most and then formulate the words and the questions to make you sound knowledgeable and maybe they will see that you can understand something about it.  We patients are deemed too dumb otherwise.  My apologies if I am telling you something that you have already done.

      There may be an Addison's association in your country too.  Give them a call and try to get some information and support from them.

      I don't think they have abandoned you as they are still working on it - trying to find someone who knows about what you have.  The good thing is they are not saying it is all in your mind.  However, feeling so helpless the way you do is stressing you out badly and this is where the psychiatrist may be helpful.  Visit him/her out of curiosity for starters just to see what they do.  It does not mean you are going bonkers, just that it is better for your wellbeing to find ways and means to cope while they are looking for a solution.  Being able to cope better will assist you to heal once they have found the solution.

      Make the appointment (is it free for you?), and you will probably have a few days (or more) to psych yourself up for it.  Don't worry about dressing up too much for it (my vice), and get your husband to drive you if he can because no doubt it is too hard to go by yourself.  He can support you to walk in too as I imagine you are very weak.

      Lots of good luck.

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    • Posted

      You're correct, I've done months of research and it just p*sses them off. There are 3 people who have it in Cork, my sons best friend was born with it but my case, I've been told, is very complicated... Duh. My life is unrecognisable and today I got a letter from my Endocrinologist basically dumping me coz the steroids didn't work and he seems to have taken it personally. I'm going to keep on trucking until I get an answer. Thanks again .J
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    • Posted

      Well, it looks like your message has come through with an * in the apppropriate place, cause you said a 'naughty' word.  Had that happen to me too.

      The endocrinologist - sounds like a one-trick pony (sorry ponies).  Not even a referral to someone he thinks might be able to help you.  Good riddance to him - such a time and health waster!  I had an endocrinologist who was such a peanut.  thank goodness he moved on and replaced by a really good one.

      Is there an Addison's assoc?  Maybe they can give you a clue who to contact.  If they have Facebook, you might be able to ask on there too to get to a wider audience.

      Yes, that is what you have to do - keep on trucking to find the answer.  I am the same with my haemochromatosis complications.  As I have been deironed for 12 years, I am told that I should be ok now but the evidence is that is not the case.  Issues after issues - because doc took 9 years to diagnose me so ended up with loads of iron stored in and damaging organs.

      Story too long - just know that I know what it is like for you although different complications.  I used to be superwoman - now just struggling all the time.  Forever searching for answers myself because I don't want to give up.

      Let us know when you finally succeed.  By the way, have you searched the Addison's forum on this website.  I have not looked myself but you might find someone with similar circumstances.

      Best of luck and health

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    • Posted

      You poor pet, that's dreadful. The entire medical community are deemed demi God's in Ireland, this is my 2nd Endocrinologist in 4. Years. They give up on you if it means hard work for them. I'm on an Addisons Forum and others that talk about the symptoms I'm having and I seem to be more knowledgeable than the Specialists but I'm being fobbed off every where I turn and it's making me very difficult to live with .Jackie
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