Cushing’s Disease and how a brain tumour made me fat.

This is definitely a period of my life I’m never going to forget. I’ve read that you shouldn’t write about yourself in blogs as people aren’t usually that interested and I usually stick to that. In this case I’ll make an exception as it’s really been quite a year for me.

I’d been feeling a little off colour and had put on a bit of weight so went to the doctor at the beginning of last year (2012). In September 2011 I’d been running and blacked out. Through the rest of the year even though I was careful about what I ate, was swimming 80 lengths of the pool everyday and running pretty regularly I was still gaining weight. It’s weird that I found it hard to climb the stairs at work because my thighs felt so weak but could still swim a couple of km. I found it difficult to sleep and bruised pretty easily.

It was a bit of a shock to be told I might have a very rare brain tumour releasing the hormone cortisol that affects 10 in a Million people. Things went downhill and Cushing’s Disease really started breaking apart my body. My muscles wasted and I carried on putting on fat. Joints skin and feet were all affected. I’ve heard Cushing’s Disease called the ugly disease so yep not great.

My girlfriend at the time was amazing and stuck with me, spending nights in the ER when my blood pressure went off the scale and at times like that.

This is my brain and I think that green bit on my pituitary is the tumour. I’m fascinated by medical imagery and it is interesting to see what’s inside you. I asked for the CDs with my MRI from the hospital and used a free bit of software to interpret it in 3d.

Anyway to put it briefly I had neurosurgery last September to remove the microadenoma on my pituitary and it was a total success.I know the NHS gets a lot of stick but everyone, from the Endocrinologist and Surgeon to the nurses who looked after me, were great and I couldn’t have asked for more.

I immediately began feeling better and recovering. My girlfriend and I became engaged and I asked my doctors if I would be able to be a dad. As we were both 36 and wanted children it was quite important. I was told that in the long run I should be okay and I should be able to be Father.

Great news ! Within a month my fiance became pregnant. At the beginning of the year we flew off to Florence and got married. I’ve carried on recovering and have lost about 3 1/2 stone and am pretty much back to full fitness.

In August my wife gave birth to a beautiful baby boy. He’s healthy and I couldn’t be more proud.It’s amazing, but without those lows I’m not sure the highs would be quite so good.

TomMorrocco2011July
Me in Morrocco in July 2011 before Cushings Disease
TomJan2012
Me in January 2012 when I was diagnosed with Cushing’s Disease
TomEdinburghJuly2013
Me in July 2013 recovering from Cushing’s Disease

Leave a comment if you have any questions !

34 Comments

  1. Hi, Tom. Thanks for visiting my site but for also sharing your story. It’s a hard story to convey but you’ve done it and hopefully others will find your story and find the hope they’re looking for through it. Congrats on your weight loss, engagement and new baby! You’re a true success and an inspiration! If I can ever help encourage you in any way, let me know. I’ve gotten to know several “Cushies” through the years. It’s great to have people in your corner that get it. Best of luck to you! Rachel

    • Hi Rachel and thanks for the comment. I hope all’s going well for you. I can remember when I first searched about Cushing’s reading lots of scary stories about unsuccessful surgeries but so far ( touching wood ) things are going well and I’m aiming for full fitness !

  2. Hi Tom, just read your story and your road to recovery. I have been getting tested for the last 6 months for Cushing’s with no avail. Im also in the UK looking for a good Dr with a keen interest as regard to Cushings. Which NHS Dr did you see if you dont mind me asking?

    • Hi Luke, I’m sorry to hear you’ve been having problems as Cushing’s is a horrible disease. I was very lucky to be referred to Prof Walker and his team at the Royal Infirmary in Edinburgh. My GP suspected I had Cushing’s when I first saw her and started testing straight away. The whole testing did take a while but I had confidence that they were trying to get the right diagnosis and get to the bottom of my problems.

      Good luck with it all and there’s a friendly group over http://cushings.invisionzone.com/ if you want to have a look !

      • Thank you for sharing your story. It gives my 17 year old son hope. He was diagnosed in Dec 2011 tumor removed Feb 2012 and on the road to recovery now still having trouble getting steroids regulated but he is doing really good but he was concerned with being sterile the drs aren’t positive if he will be or not because he was just starting puberty when he was diagnosed but he said reading your story gives him hope

        • Thanks for getting in touch Rachelle and I hope your son gets everything sorted out. Hopefully I’ll be off the Hydrocortisone soon and we were surprised and delighted that only a few months after pituitary surgery we found out our son was on the way.

          I’m still not quite back to full fitness but taking everything one step at a time !

    • Luke, sometimes Cushing’s Disease is cyclical, which makes it harder to diagnose because doctors only know how to catch the highs, not usually the lows. Basically the cortisol comes in spurts abs then relaxes and acts up again, unpredictable of course, no pattern, no way to predict! For years many in the Medicaid field who were aware of Cushing’s, thought it too rare to every be the actual diagnosis, on top of that, many refused to believe that it could be cyclical. If it didn’t show up on one test, they called the patient a fat liar and gave up believing they had anything wrong with them other than an eating disorder. I’ve had Cushing’s since 2006, diagnosed first in 2008. My tumors were MACRO adenoma, they still claim this doesn’t happen in Cushing’s Disease effervescent though my tumors tested positive and so did I. They were surprised I wasn’t dead by the time the surgeon saw me he admitted to surgery right away, he called 911 right from his office. Same thing happened again in 2012! In 2012 I had another macro, this time my Cushing’s was cyclical. They operated again, but because of cavernous sinus invasion this time they couldn’t remove it all. I’ve refused radiation so far. Next step will be tumor resection again plus adrenal glands removed plus radiation. Because my tumors grow large, cancer is a concern too. I severe pain and muscle atrophy. I recently moved from Nevada, USA To Colorado, USA and my new pain clinic doesn’t understand my medical circumstance and they are trying to reduce my pain medications. I’m fearful because my pain is far from over with more surgeries to come. Cushing’s is highly misunderstood. It’s hard to find doctors that get it. Patients know more than many of the doctors do even it comes to rare disease.

  3. Well done – amazing story! I am going through exactly the same although only 10 weeks post op! I have lost some weight so far but the main thing for me is getting back into my fitness. It’s hard. Can you tell the difference now – are you fitter?
    I am climbing Kilimanjaro next year to raise money and awareness for the Pituitary Foundation! At the moment though I don’t know how I’m going to manage it!

    • Thanks Jemma. Yep, I’m definitely fitter, have lost quite a bit of weight and am feeling stronger. It’s totally different to those years with Cushing’s. I haven’t been quite as disciplined with the exercise as I could have been but with a ten week old baby I have a bit of an excuse. I think it would be pretty exhausting without the Cushing’s recovery !

      Good luck with the climb !

  4. Tom…congrats on recovery! I, too, am in recovery. I had my second surgery (finally…success!) in December of last year. In May, I found out I was pregnant with my second child. I had my first before I was diagnosed with CD and started to see the symptoms right after his birth. I wanted to have a second but couldn’t get pregnant…which, in the long run, is how I achieved diagnosis and finally a cure. It is scary how something so small can affect every system (almost) in your body. My physical appearance was one of the hardest things to deal with…looking in the mirror and not recognizing who was staring back at me…was devastating. Good luck with your son and fatherhood!

    • Hi Kristyn. Yep, I was at the point where people weren’t really recognising me. I saw an old workmate out for a run one lunch and later on he mentioned that he’d spotted me but hadn’t believed it was me. It was difficult but the support of my family was great and they went through a lot with it too. I think my Mum was more worried before I went in for surgery than I was. I’ve heard that the longer you go without a recurrence the more likely it is that it won’t be back but let’s hope I’ve seen the back of it !

  5. Hi Tom! I’m Grace from the Philippines. I think I have Cushing’s. I have overdoses in taking steroids because of a skin allergy which still isn’t healed. I have gained weight faster than a thunder to the pointh that some of my friends don’t recognize me. I have yet to see a doctor. I did think that Cushing’s exist. I don’t know where to start because it may be so expensive here. Is surgery the only remedy? Help!

    • Hi Grace ! Pituitary Cushing’s is meant to be very rare but if you think you have Cushing’s from taking steroids then you definitely see your doctor about it. They may have to adjust your medication !

  6. Hey Tom,

    It’s me Joeysauce, from the Cushing’s boards. You look great man. A true inspiration for sure. I think you’re looking thinner now than before! Keep it up! Congratulations on the marriage and child too!

    I am happy to say that I have lost 17 pounds since my last visit to my endo in July! Having a real hard time gaining muscle, but that could be because of my other hormones being affected from the surgery. I am making a good amount of testosterone on my own again, but my growth hormone is low and will probably need replacement for that soon. Other than than, cortisol (no replacement), ACTH, and thyroid (on replacement) are normalized!

    • Hey Joey. Great to hear from you and I’m glad you’re doing well. I’ve heard that HGH is notoriously difficult to test ! Good luck with it.

  7. Hi Tom
    We have chatted on Cushings support and so happy to hear you are doing so well a year after surgery. Congrats to you on your new baby and your new life..stay well and bless you and your family.

    • Thanks Sharon and yep we’re super proud parents. I couldn’t have imagined my situation today even a year or so ago !

  8. Hi Tom! It’s Sarah Durham, one of your fellow Cushie Facebook friends. Thanks for spreading awareness and sharing your story. Someone posted it on Facebook today and I immediately recognized you. I was thrilled to see your story being shared. That’s the only thing we can do, spread awareness. I love seeing pictures of your baby boy on Facebook and I’m so glad you are healthy and able to enjoy him. My poor six year old only knows the sick me and that devastates me. I hope that one day I can be the fun, active mom he deserves.

  9. Thank you for sharing your story. Being just over 6 years post-recovery, I am blessed everyday to feel myself again.

  10. Thanks for the inspiration man! I go for the trassphenoidal for microadenoma next week & really needed a success story!
    Did all my preop testing today so it just became very real for me.
    Thanks for adding to the ‘success’ column 🙂

    • Well good luck with it Tara and I hope it goes well. For me it was more weird than anything else going to hospital but I was pretty loaded up with drugs so was never in any pain. As I came around a few hours after my op I wanted to get up and have a pee. I was also looking for a spare socket to charge my phone but was frustrated they were all used by medical equipment. Fingers crossed you’ll be back to health shortly.

  11. Thanks for sharing your story. I saw how your body and face changed in less than a year.
    I am glad the surgery was a success…kudos
    It gives us hope and courage to look forward too!!!
    I wanted to ask you….is thigh pain ( you mention walking up the stairs with difficulty a part of Cushing’s?)
    My testing should be finalized soon!!!

    • Hi Lidia. Yep, I think the thigh pain for me was due to losing upper limb muscle and gaining weight. It was weird as I was swimming quite a bit so managed to keep my weight down for a while but climbing stairs was a problem for a while. There are so many things affected by high cortisol it’s hard to know what’s causing what. Good luck with your testing.

  12. Hi Tom,

    I also needed a great recovery story. Just heard on Friday that the MRI revealed a tumor on my pitutary.

    I can track the disease back at least to 7 – 8 years. I might have cyclical Cushings.

    I have experienced anxiety, easy brusing, thin skin, weight gain, hypertension, weird acne in the scalp, rosacea, fluid retention, balance issues, rashes, and poor concentration.

    Less than a year ago my GP was telling me to go home and wait until the symptoms worsened because they did not know what the cause was based on the test they performed. This includes a test for cushing that came back negative. I think I was passed off as FFF – female, fat and over forty.

    I insisted that I wanted to find the cause and was referred to en endocrinologist. I am so medically ignorant I really didn’t know what an endocrinologist did or how important the hormone levels are.

    Glad you are helping to educate people I will post my story when I am on the road to recovery.Best wishes to you and your family. So nice to see a happy young couple!

  13. Congratulations on a success story.

    I’m still in the nightmare of Cushing’s. I too had a quick onset and diagnoses when I was 17 and had two pituitary surgeries when I was 18. I never went into remission just more like denial until the Cushing’s really started to act up last fall almost costing my life on two separate occasions. I was lucky enough to have a successful pregnancy (although that too was very rough on me and almost cost my life but never the less it was successful) through this so now I have a young child to stay alive for otherwise I would not fight this again. So here I am 25 years old severely sick receiving treatment using Korlym until I’m more stable for a BLA and Pituitary Gland removal surgery.

    I was very glad to see your pictures. Although I’ve seen many pictures of people through the years that have had Cushing’s I’ve never really seen any guys since it seems even more uncommon.

    Again I’m so happy for you. And congratulations on the baby also. They bring a whole new meaning to living. And make everything worth it in the end.

    ~Melinda Smith~

  14. I need your docter name and adress thanks for sharing your storey and the test you did

  15. Thank you so much for sharing your story. I am in the process of seeing specialists and being tested. I have been very nervous and afraid. I just hope they can help me and I can make a full recovery. I really appreciate you blogging this because it gives me hope and eases my worries. I hope you and your wife and child are very happy and healthy together.

  16. I’m in the process of being tested for Cushings right now, I started in June, it’s now Sept. I’ve had 2 rounds of 24 hr urines, bloodwork and saliva. Each time I fail something and show elevated cortisol. Now I need an MRI and CT scan. I’m waiting for the bloodwork to allow me to have the contrast dye, and insurance authorization. It’s frustrating. I don’t recognize myself in the mirror. Before. My appearance changed I just could lose weight. I actually gained weight while dieting and doing cross training 4 days a week in addition to kickboxing, bike riding and long walks. But my routine bloodwork was good. Finally when my BP shot up out of blue and my A1c suddenly went up, my PC referred me to an endocrinologist. It’s takin forever but at least I feel like something’s being done. I hope my imaging is negative and I can just be treated with metformin, but either way they finally know it’s not me being lazy.

    • Hi Gina!
      the good news is that you’re onto diagnosis. What you describe is just what I felt. Everyone said I was aging or just thought I was unable to control my weight. I had anxiety really badly in the beginning and could not sleep. No none understood what was happening to me. A lot of people still don’t get it.
      I was very blessed to have friend diagnose me. After finally getting medical help I am cured. I can trace cushings at least 8 years prior to surgery. I never had trouble with weight before either. Now I am strong enough to go back to the gym to regain muscle. The weight fell off in 6 months without much effort. I feel so much better. I have my life back through the miracle of having the right people and help in my path. Hang in there it can happen to you. I get lots of compliments on my weight now and my friends and family have been super supportive. You can get through this and it will make you stronger.

  17. I’ve just come across this site I don’t do face book and reading some of them is helping a wee bit . I was diagnosed with cushings disease 2015 after 2 year fight constant visits to the doctors bloated stomach buffalo hump moon face weight gain even though I watch my diet exercised constantly additive really I was diagnosed with celiac acid reflux ,hiatus hernia and an under active thyroid . I had all the tests MRI scan ,urine tests ,inferior petrosal sinus and it confirmed I was producing too much cortisal and had a tumour on my pituary .i was scheduled for surgery on 13th October 2015 in Queen Elizabeth hospital Glasgow everything went well I stayed in hospital for a week I was prescribed 20mg hydrocortisone . I returned home great support from family epic all hubby and 2 daughters . On the 4th November I was admitted to hospital feeling awful terrible headache no energy lack of appetite . I had a lumber puncture cat scan all came back clear they said it was an infection . Since returning home my muscles ache as if I’ve done a heavy workout appetite still not great taste buds not great still no sense of smell lack of energy , sleeping pattern still not great lots of hot and cold sweats and I crave very cold drinks . It’s nearly 6 weeks since my op I have also lost 9 lbs and I know I’ve still got a long way to go . The other day I was at the hosp got bloods done testing my thyroid function amongst other things I might be going through the menopause hopefully gets it over and done as I was 50 in September and in a few weeks I’m having a test to see if my ardrenal glands are functioning . Im still off work will probably off till after the new year . Thanks for reading and I hope anyone can share their experiences as I don’t know anyone who has gone through the same as me
    Denise ????

  18. Hi i am 17 yearl old i have cushing syndrome and now i am in hospital before 2 weeks ago i understand what i have but i am afraid because i dont know if i will be good

  19. It’s great that you shared this. In the Bering I thought I was imaging what was happening to me. After seeing so many doctors and being told I just needed to loose weight finally a doctor ran some test and diagnosed me with Cushing’s. On May 3rd 2016 after two years of living with Cushing’s I had the tumor removed. It’s only been a few weeks and am on hydrocortisone 20ml, I still have head aches and was told it will past in time. I can’t smell and have no sense of taste. I hope to get. Ack to the gym soon and work on loosing the 70lbs I have gained. You guys have giving me hope.

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