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Extra symptoms of Cushings

Posted , 4 users are following.

vicky61456
vicky61456

Despite the efforts of my Gp and myself it was not until I watched a Doc Martin episode that I realised what I had thought were personal problems were actually symptoms.  The symptoms were

excessive hairiness

excessive sweating

After these symptoms were added it became clear that I had Cushings.

1 like, 20 replies

20 Replies

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  • sheltielife
    sheltielife vicky61456

    Posted

    If you are anything like me and most of the people on here you will have to do your own diagnosis and then try to convince the endocrine specialists that you are right! Had it not been for the internet and in particular forums like this one I would have never been diagnosed! I did have the help of a renal specialist who fought to get them to believe it but it took a long time over 2 years from my first being sent to the renal specialist for blood pressure problems. People on here have certainly been a great help to me as they give you confidence that you are right no matter what the doctors say. So, good luck for the future. I had my adrenal gland removed last May and am fine now I have other non related problems that I thought were to do with the Cushing's but weren't and no I have changed my GP practice and seem to be getting nearer to finding the cause with them.
  • gill43753
    gill43753 vicky61456

    Posted

    Hi vicky61456, 

    I know the feeling.I was 33 when my diagnosis was finally made,after 5 years of problems,sometimes awful and sometimes not too bad.I had my adrenals checked,menopause was suspected,a virus was suspected,while I was putting on weight,sweating,gaining bodily hair,moonface,and stretch marks appearing on my tummy,plus loads of other symptoms.Finally a blood test turned up abnormal for increased cortisol,and it turned out that I had a tumour on my pituitary gland.That was removed in 1997,and I now take medications to replace what the pituitary should be doing.

    • vicky61456
      vicky61456 gill43753

      Posted

      Hi Gill,

      How are you feeling now?  I had my Pituitary tumour removed in 2012, then caught an infection which took 2 years before the powers that be listened to my GP1  It is now getting better but there are days when I still feel lousy.  I am 60 and so sorry that you were so young when diagnosed.

    • gill43753
      gill43753 vicky61456

      Posted

      Hi Vicky,I have to be honest,not good.I'm on these forums now, trying to understand what's going on with me.After my op in 1997,I was put on Prednisolone,as my replacement steroid ( on Hydrocortisone I can't even drag myself out of bed).I have mild Diabetes Insipidus,resulting from the pituitary op,so take Desmopressin.I was never warned that anything else could start to run down,until my Endocrine specialist was changed,because we moved area.This was end 2010 into 2011,and I had become so depressed and achy.It turned out that my pituitary was doing nothing to keep my thyroid going,and I also had no Growth Hormone.I needed a Psychiatrist to get through the awful depression,thyroxine replacement medication,and have to give myself daily Growth Hormone injections.However,I'm still feeling I have thyroid problems,and on a higher dose of Levothyroxine,I don't feel better,and having side effects from the Levothyroxine.It seems a lot of people have,I've now discovered.Am seeing GP this week,armed with any information I can get hold of,to see what he can do about an alternative medication.I hope all this doesn't depress you.
    • vicky61456
      vicky61456 gill43753

      Posted

      Not at all.  Like you and many others I guess it was never explained to me exactly what the Pituitary Gland did, apparently everything.  I am on Hydrocortisone, kevothyroxine, desmopressin, 16 pain killers a day, Cymbalta for depression, Letrozole for cancer and I think thats it.  What is awful and I don't really like to say it but I had cancer and I had an op etc and am fine so far.  That was done and dusted.  But the Cushings is far  more dreadful.  I am trying to find out common factors between us Chushies.  I have a buddy and am buddy to another.  2 of 3 have had a blood transfusion but al so 2 other people haven't.  I don't know what casuses it, I have a wonderful GP who is fantastic but I just want to feel well.  Forgot to say that I am also on sleeping tablets to help me sleep without nightmares.  Because there are so few of us I suppose some people are not interested in us.  Do kkep your chin up.  Through these forums we can at least help each other.  At least we are not on our own on here.  Good luck with the GP.  Do contact me whenever you want to I check in regularly.  Thanks for the FORUM!!!
    • gill43753
      gill43753 vicky61456

      Posted

      Hi Vicky,Gill again.Were you given all your replacements straight after your pituitary surgery?
    • vicky61456
      vicky61456 gill43753

      Posted

      Unfortunately no.  They more or less waited until I had symptoms and gave me medication then.  I was a bit different because I had 5 ops in the first year and they spent most of that time just keeping me going!  I am now on Desmopressin for Diabetes Insipidus (nothing to do with ordinary diabetes) and Levothyroxine because my Thyroid doesn't work properly.  Each of us is different but suffice to say that the Pituitary Gland is a bit shot when it comes to all your hormones.  If you have any symptoms go to your Gp or endocrinologist and explain.  My GP is wonderful so I can ask him anything but not all are so interested in us rarities!
    • gill43753
      gill43753 vicky61456

      Posted

      Hi Vicky,

      My GP takes far more notice than my endocrinologist,but readily admits when he finds me too complicated.The reason I asked is that having NOT been given thyroxine or growth hormone following my pituitary op.,I hadn't expected to become deficient in them 14 years later,and wasn't warned that could be the case.In fact,I'm beginning to wonder if my previous specialist was either negligent,or just not completely familiar with me condition.Having been sent to Oxford for a specialist surgeon,I think it would have been best to remain under their care afterwards,instead of being referred back to my area hospital.

      Thank you so much,Vicky,for being there.There's really not many people who have been through this,or at least not many you can converse with.

      Many thanks,Gill.

    • vicky61456
      vicky61456 gill43753

      Posted

      Hi Gill, no worries.  My Surgeon was in Bristol but from what my GP has said the Surgeons do their bit and then pass you over to the endocrinologist who then passes you on to the GP.  I have a buddy who was operated on in Oxford, Professor Wass who is supposed to be brilliant, she can talk to him regularly.  I went to Bristol Mr Nelson and although he is good I was terribly ill aftet the first op and when my GP diagnoed an infection in the PIT gland and gave me antibiotics my endocrinologist told him that she would be taking care of me and to butt out!  It then took a firther 1 1/2 years for them to decide that I still had a terrible infection and to do something about it,  I have a lot of faith in my G.P. but it is hard for him beecause of all the other things we have to deal with.  it is your body and if you feel that something isn't right then keep on.  There is defintely a heirarchy in the Medical porfession but keep on until you get some answers. I hope that you get some help and if there is anything I can do or you live in the South West maybe we could meet.  I also get annoyed that all the Pit Gland meetings seem to be in London and I can't belive tht there are any more Cushy' s there than in the SW where I know another 2 at least.  I am thinking perhaps I should set up a support group for this area.  Anyway take care.
    • gill43753
      gill43753 vicky61456

      Posted

      Hi Vicky,I was also under Prof. Wass in Oxford for my pre-op scan and for surgery.I was sent there for a specialist surgeon,as my op had to be done relying on CT scan only,because I have a metal filter which doesn't go well with MRIs.I also had to be in a week before to stabilise my warfarin level.I still bled too much,apparently!
    • vicky61456
      vicky61456 gill43753

      Posted

      My buddy Val was also under Prof Wass.  She sees him regularly and reckons he is always there if she needs him.  She is now okay and lives part time here and the rest in New Zealand!  If in doubt make an appointment to see him or get your GP to.  It is worse not knowing and you sound as if you have been trhough enough already!
    • gill43753
      gill43753 vicky61456

      Posted

      Hi Vicky,heard this morning that I'm being referred to another prof in Oxford.
    • vicky61456
      vicky61456 gill43753

      Posted

      That's good I hope.  Start as you mean to go on.  Tell him exactly hhow you feel etc.  I really hope this will be a turning point.  All the best.  Vicky
    • Sister_sister
      Sister_sister gill43753

      Posted

      Hi, you said "I'm still feeling like I have a thyroid problem" . That really struck a chord with me. I don't have Cushing but I struggled with getting my Dr to give me thyroid. Long story. Anyway I was given levothyroxine at first and felt horrible. Another long story short I needed good old Armor thyroid. I'm not sure why docs don't give it out because it used to be the standard. My understanding is that it supplies your body with T4 & T3 while the synthetic assumes your liver will convert the 3 to 4's or maybe other way around. Anyway 30% of the population's livers don't do that so it's like running a car on 3 wheels instead of four. Maybe your doc will help you try it. It's changed my life. I had to stop working out because my blood pressure was 118/47 like walking death at 42. Now I'm swimming and managing my 3 boys aged 10-17. BEST to you and all hope for your best health!
    • vicky61456
      vicky61456 Sister_sister

      Posted

      Interesting about your Thyroid problems.  I understand exactly what you mean.  My blood pressure is low and I sometimes feel like a zombie.  I will ask my Endocrinologist about the alternative medicine.  Glad you are feeling better and thanks for contributing.
    • gill43753
      gill43753 vicky61456

      Posted

      Hi Vicky,

      Could you tell me please if you take adrenal supplements and/or extra vitamins when you're poorly,like fighting abad cold,like I am at the moment? The thyroid group I'm part of suggested this,but I've never been advised to,and I have to consider interactions with other medications.I don't know anybody in a similar situation to me,well at least,not until I 'met' you on here.Gill

    • vicky61456
      vicky61456 gill43753

      Posted

      Hi Gill, I am really sorry but I can't help.  I don't take any adrenal supplements nor extra vitamins.  As you know it is difficult when you are already on tablets.  With pain killers for a completely separate back problem I now take 20 tablets a day!  When I have been really poorly my endocrinologist has suggested upping my steroids for a while.  I am so sorry not to be able to help you more.  Does your endocrinologist deal with your Thyroid problems dud to the Cushings?
    • gill43753
      gill43753 vicky61456

      Posted

      Hi Vicky,yes in theory, though not very helpfully, which is why I'm seeing this other endo in Oxford, but June feels a long time to wait!
    • gill43753
      gill43753 vicky61456

      Posted

      Hi Vicky,I've been conversing with Georgina on the subject of Cushing's,and suggested that she try to find you,as you're so helpful.I hope she finds you,or maybe you could find her?Gill
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