May 1, 2016
(SLE) Systemic lupus erythematosus, Addison's Disease, Adrenal, Adrenal Insufficiency, Adrenal Surgery, Hypothyroidism, Other Diagnosis, Pituitary, Thyroid, Treatments
adenoma, adrenal crisis, Adrenal tumor, Adrenalectomy, brain fog, cortisol, depression, endocrinologist, fatigue, hydrocortisone, hypothyroid, irregular periods, Levothyroxine, migraines, mood swings, Neurologist, pituitary, Propranolol, Psoriasis, Ramipril, sinusitis, unilateral, weight, Zoladex, Zolpidem
Hmmm, where to start? “Hello” to one & all, & how I wish I had discovered this friendly & helpful site 3 years ago. Ah well, better late, than never, eh?
Anyway, back to me : in a nutshell – 47 year old single female, 87kg, 5’4″, Post Cushings Syndrome through Adrenal tumour & subsequent unilateral Adrenalectomy I’m now Hydrocortisone (HC) dependent , Hypothyroid (just switched to NDT & T3 combo from synthetic T4 & T3), Pituitary microadenoma.
Now for the details…..are you siting comfortably? I’ll try to keep to the plot ! Suffered with bouts of fatigue & depression since my early 20’s. Spells on different types of anti-depressants which didn’t help me much.
Skip to 2004,weight going up despite no change in eating/excercise habits (those intermittent years were filled with seeming to pick up every bug & cold that was going around & weirdly taking longer than others to get over illness) prescribed Zoladex implant to relieve very painful & intolerably heavy periods, along with severe mood swings.
Tiredness is now just an unwelcome fact of life for me, weight still increasing gradually. Developed Psoriasis.
June 2012 diagnosed Hypothyroid after completely breaking down in GP’s surgery & being referred to Endocrinologist. Signed off work for foreseeable future. Prescribed Levothyroxine, Zolpidem & Ramipril, weight goes up more. More investigations pinpointed extremely high cortisol levels, (I have all the physical signs of Cushings at this point – but Endo has not even mentioned the condition to me!)
Meanwhile referred to Neurologist for my now weekly migraines, prescribed Propranolol & he & Endo agree on cranial MRI scan to help both of their cases with me. Full body scan also booked. In the same week I learnt that I had both a tumour on my right Adrenal & also a Pituitary micro-adenoma. More tests which determine that it is the Adrenal tumour causing my Cushings (oh, & I had to ask Endo if what I had was Cushings – as he had still not even uttered it’s name to me! )
Unilateral Adrenalectomy performed Aug 2013 (had to fly 200 miles to have it done – alone – haven’t told my family who live 300 miles away about either tumour).
Post op weaned down from 40 mg to 17.5mg HC per day, over few months. Feb 2014 went into adrenal crisis & rushed to hospital – remaining adrenal obviously not working yet.
Since then, have had 9am bloods every 2 months & follows up with Endo & still no sign of life in Adrenal. Have lost only about 4kg max since the op – still obese & unable to loose weight & still have the classic Cushings apple shape.
In Aug 2015 returned to work full time, in a downgraded role, & have to up dose to 20mg HC just to get me through working day. Begged Endo for T3 to try alongside the Levo & was granted in Nov 2015 . Slight improvement at first, but short lived. Also i asked to come off Zoladex implant, to see If that side of things are any better yet. No period yet. Shattered & aching, have no social life or energy & spend weekends resting in lieu of working week & in prep for the next one, waning to be alone.
Grasping at straws to feel better so am now (since mid April 2016) self medicating on NDT & T3 as Endo does not support prescribing it. Endo does not want to see me now until Sept 2016 , when I am due an MRI again to check on the Pituitary tumour size/growth & have next 9am bloods.
That’s about it medically………quite enough for me, thanks ! P.s I have bad brain fog (& also Sinusitis at the mo) so may well have missed something & will probably remember it in about 3 days or so !!
Thanks for reading & welcome to my world : /
HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
December 11, 2014
(SLE) Systemic lupus erythematosus, Fibromyalgia, Other Diagnosis, Steroid-Induced
Adrenal, Buffalo hump, cortisol, dizziness, fatigue, Fibromyalgia, flushing skin, headaches, insomnia, leg pain, marajuana, migraines, MJ edibles, Percocet, Prednisone, rheumatologist, saliva, Systemic Lupus Erythematosus, Tramadol, tremors, weight
Hi! My name is Helena (hummerbird). I am going to be 60 next week, Nov 16. I have come full circle with this.
I knew I had adrenal problems 12 years ago when I got stuck in the ‘fight or flight reflex’. I paid to have saliva tests done and it showed that I was dumping cortisol into my system early evening with my lowest point being 6am in the morning. I showed my allopathic doctors the tests but none would put any stock into saliva testing and just blew me off (this was 2002).
Some of my first signs were extreme insomnia yet when I did sleep I would still feel extremely fatigued, flushing of the face, neck, chest, and back, weekly migraines and daily headaches which started after I was 45, unexplained weight gain, crazy buzzy internal tremor adrenaline smacking (I could actually taste it!) jitters that would not go away, hypersensory (especially to light and sounds), feeling painfully sunburned even though I had not been out in the sun, pain in my legs going way beyond restless leg syndrome, totally fearful of everything, developing a hump between my shoulders and a host of other symptoms.
I was first diagnosed with fibromyalgia 03, then SLE Lupus 09 (positive ANA but no markers).
We moved to Colorado in 2012 and then back to Oregon 2014 and when I saw my rheumatologist again after 2 1/2 years (Oct 2014), he said it looks like you have Cushings? So at the moment I am suspected to have Cushings. I have been reading up on it and I am totally textbook (including the fact that I could literally step into the profile of the picture of the woman with Cushings).
Not sure if this is drug induced or if the prednisone finally brought out the demon that’s been tormenting me. My rheumie wants me to slowly wean off the prednisone. My dosage was 5mgs per day unless I was flaring (dealing with horrible muscular pain and internal tremors) then I was to do a step down starting at 30mgs back to 5mgs. I probably do a step down every other month.
My internist in Colorado wanted me to get off my Percocet 10/325mgs 4 times a day and try to deal with the pain. For the first time in my life I used MJ edibles to get off the Percocet with only a week of hard withdrawals. I was on the MJ edibles for 3 weeks until I realized I was allergic to it! I now take 2 Tramadol 50mgs 3 times a day to control pain. On the negative side this is not working because I have too much breakthrough pain but on the positive side I have a clearer head (I’m able to focus and read again!).
Over the years my days have gone from one ‘down’ day a week to a whole month of down days. I have lost my quality of life and pretty much my social skills. My venturing now is from my bed to the bathroom, kitchen, and possibly my recliner if I’m not feeling too dizzy.
I have three saints in my life, my husband and my two girlfriends who take care of me. I know that God has a plan for my life and I have faith in knowing that I’m going to feel well again some day. It has been a long and expensive road to travel to get to this point. I am not looking to have Cushings but it is a diagnosis that finally fits completely. I’m looking forward to meeting the support group.
Love you all and thanks for taking the time to read my post.
HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio