Living with Panhypopituitarism after prolactinoma pituitary tumour

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Hi ,

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 sad 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 !

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8 Replies

  • Posted

    wow

    this is very useful and informative.

    and what a nice change to read somethings so positive!

    it's great that you say you feel well on a daily basis.

    out of curiosity, how long did it take before you could say that, post radiotherapy

     

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    • Posted

      Hi Dambudzo,

      Thanks I know I found it hard looking online for support as everyone has so many different experiences and can be quiet scarey to read about when it comes to the pituitary. Its hard to say how long exactly it took to start feeling better. I was off work for 9 months post radiotherapy!! If you are having the radiotherapy then in my experience it works really well in removing it and stopping in coming back... 

      Hope your okay, take care, be strong !!!!!

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    • Posted

      hi.

      i had surgery then medication then radiotherapy.

      now i am still on medication. 

      radiotherapy was 2 and a half years ago and we are still waiting for a sign that it has had any impact....

      as you say, everyone has different experiences!

      maybe i just need to be more patient....

      all the best

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    • Posted

      Hi

      Awe I see well im on life long hormone placement as they took the pituitary away  but tumour wise they said after the first scan it had shrunk and the second scan they said were good results no changes and third scan still no changes it has gone.

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  • Posted

    Gee, they gave you a hard time.  I told endocrinologist that I knew that there was medication for it - I had no intention of having it removed by surgery.

    6 years later I still take the medication (Carbergoline) although the tumour has gone and the prolactin very much decreased, but when I try to reduce the Carbergoline, my oestrogen becomes deficient (5-alpha reducatase enzyme effect).

    I do have an MRI every 3 months to make sure another dangerous cancerous tumour on my parotid gland does not return in any form, so it keeps an eye on my  pit gland too.

    I knew a young woman who had her pit gland removed for the same reason, and a few short years later, she died from a tumour in her brain.  So keep up those MRIs, don't let them slack off.

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    • Posted

      thanks for your reply, sounds like you have had a hard time to. Thats really sad that happened & very lucky. I had no choice about my op as the first tumour was so big, it was a hard time but Im better now and I still see my specialist ever 12 months and I trust him 100 %.  I think its important to be proactive with any health condition and yes definatly get regular MRI's and check ups.

      Surgery has also come along way from 1998 to 2004 I found the second time wasnt half as bad, the nurses etc are far more aware of the condition & the ear nose and throat surgeon does so many of these types of operations that I was only inhospital for 3 days!  

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