I am a 45-year-old female I have five children three of which are adults and two that are 17 and 16 years old.
Around 2018 I started to develop a very round face plus I had a lot of weight gain in August 2019 I had an MRI of my brain and there was a pituitary microadenoma 6 mm I had a second MRI in August 2020 and I still had the pituitary microadenoma well then December 2020 I had an MRI and the microadenoma was gone sooooooo I said to my Endo maybe we should take a look at my kidneys
well I just found out about those my right one has a 8 1/2 mm nodule on the adrenal gland and then my left kidney has a some type of cyst on the superior pole of the kidney And some kind of lesion I’ve been referred to a urologist to take out possibly my adrenal gland my endocrinologist he did notate that he was going to be considering adrenalectomy as possibly the Best treatment along with the urologist I just got referred to the urologist I have to call them back on Monday to set up an appointment
I am I am nearly 400 pounds I have lost all my hair I’ve lost my fingernails twice due to fungus ravaging my body when I am sick weak such opportunistic little suckers and I don’t eat very much out of the seven of us in this house I eat less than anybody does no matter how little I eat I just keep getting bigger and bigger and bigger and then I got the skinny legs and I’ve got fins skin that cracks open all the time for no apparent reason and then take forever to heal
I had one midnight salivary test will come back 253 I had a second salivary come back 127 but four months later they messaged me and said it was a mistake the 127 was not my results my result was normal little bit shady I asked how and why this could’ve even happened four months later and the doctor says he does not now s
o then my next cortisol test was with the 8 mg dexamethazone suppression and it took it down very low so I’ve been with this endocrinologist since August 2019 and he’s tested my cortisol three times and my urinary cortisol has collected one time there was nothing cortisol related with my urine and also cortisol blood tests that were within normal limits as well so he says I have intermittent Cushing’s disease
Cushing syndrome yeah I don’t feel that he is vigorously done anything to treat me do more testing do more salivary‘s do more anything if I wasn’t so deep in this already I had to wait four months to see him back in April or August 2019 I’m this far in and to back out now and try to find an endocrinologist would be a total pain in the ass my whole body has changed my mind has changed my memory my vision my confidence
I have a very hairy face now and it actually connects all the way around to make it go to you now so that’s wonderful and my stretch marks have gotten deeper and more severe on my abdomen and sometimes even feel like they could crack open him as I’m prone to fungal infections when I am not in good health I have ringworm on my stomach I have ingrown hairs all over my chin that can’t get through the scar tissue from a previous health issue that I can get into later so the hairs get stuck Behind the scar tissue and just keep getting more ingrown and More ingrown.
I am basically paralyzed and I’ve been telling him this for over a year I feel like I am going to be paralyzed I feel like my legs are not working my muscles are not working I have such weakness and such pain in my body it is unreal it’s inhumane in my opinion and awls I can take for it is Tylenol
I cannot believe in the year 2021 once they killed a bunch of people off with opioids they never thought hey maybe we should develop something else for pain real pain that works idiots!
There is a lot more to my story that I hope to get to share with people that have gone through this living hell and I am in desperate need of support in guidance I have no one to talk to you about this that knows really anything about it so I’m hoping here I can find support.
FIND SOMEONE TO SAY “OMG ME TOO” just any connection and advice I hope to find here. I’m afraid I’ll die before they finally decide to take action.
For over theee years I’ve had 10-30 anxiety type attack’s a day. I break into a sweat, turn bright red and my heart races. These attacks happen immediately after I am anxious about something so I was always skeptical when people called them hot flashes.
I’ve put on 30 pounds although I eat extremely healthy with limited sugar, flour or dairy. My cholesterol is up to 245. My libido is completely dead which is not the norm at all. I have a shawl of fat on my back with a fat bump on the back of my neck. My stomach is so big I’m embarrassed to go out. My legs have started getting fat on them which never happens.
I’m hyper sensitive to smoke and chemicals and mold. I get incapacitating headaches frequently. I take feoricet, ice and have to go to sleep. I have no desire to exercise even though I grew up playing the tennis circuit. I have huge difficulty concentrating. I cannot remember even the simplest numbers. I feel like my vision is getting worse even though I wear glasses all the time.
I’m not the happy, gregarious person I once was and I rarely go out anymore. I want my life back.
I live in N.J. if anyone knows of a Dr who might be able to help me I would be most appreciative. I wish you all good health.
Hi, This is my document,which I have sent to the doctors, I thought I’d add it as my bio..
FEB 2005 Constipation, Craving for starchy food, Blocked nose right side and change in shape of right side of nose – flattened cartilage.
END OF AUGUST 2005
Large cyst in left side vulva, 2 x two weeks antibiotics wasn’t resolved operation to drain the cyst.
SEPTEMBER 2005
Swelling of stomach after operation, went to doctors thought IBS was given Fibre gel, stomach distended couldn’t go to the toilet for 10 days a lot of pain and a big thick blistering rash at base of spine.
Nurses visited to give enemas wouldn’t work a lot of pain they refused to continue. A&E – X-rayed showed Impacted faeces , given Movicol which worked, told to eat lots of fruit and veg. Did as advised became impacted again.
Ultra sound of ovaries and Stomach – Couldn’t see as fizzing from laxatives.
OCTOBER / NOVEMBER 2005
Doctor referred to Gastro Doctor McStay – Scheduled for Endocopsy – Confirmed Hiatus Hernia
December 2005 / 2006
New Years eve very down and ill with continuous impaction and other symptoms. Friend said to stay at hers and not to stay on my own as it was New Years Eve. Had a few drinks of rum. Early hours of the morning went to bathroom started sweating – collapsed – came to briefly and was on the floor couldn’t control body – friend came in I was having a fit – had cut my mouth and nose. Went A&E new Years day, they said must have been a one off.
January 2006
Sindosopy – Minor inflammation, slow bowel
Follow up Dr. McStay – Advised to take Mil Par for rest of life
February 2006
Symptoms worse very distressed had spoken to PALS previously as felt so ill to wait for appointments and hadn’t been advised what to do next. I had a phone call from a lady at PALS at home she advised me to see A homeopath and said I had Candida from all antibiotics and gave me contact information for a lady to go and see. I Looked up Candida Diet on the internet and started the diet and also went to my doctors at Southchurch Boulevard and asked for an antifungal. He gave me the tablets and I felt really good whilst on them and on the diet but stopped when I didn’t have anymore tablets left.
March 2006
Homeopath (details given to me by PALS) – said I had systemic Candida and low in vitamin’s and took foods out of my diet intolerances and I started being able to go to the toilet a bit better and felt a bit better as month went on. Although always have a swollen stomach, much improved with diet. Also, the ryvita that I was allowed to eat affected my stomach.
Could only eat plain rice, potato, lean meat, Fish. If I ate wrong food I was ill some times I had bad nausea aswell as distension and constipation and other symptoms. If I ate fat I would have nausea and pain in my right back.
I also started getting a lump in my lip which turned into about 10 blisters and the blisters have gone but the lumps is always there and dries out all the time and it sometimes turns into blisters but never goes.
OCTOBER 2006
Homeopath said I should be okay and to introduce foods I did this and became ill. She advised me that I must have an underlying condition, which is why it wont go and said to go back to doctors.
December 2007
I was very low as I thought I was getting better and kept eating foods which made me ill as I was depressed over Christmas. Then I went to a new Doctor at Cluny Square and explained what was happening. He said possibility of Celiac I had blood tests but not biopsy and the diet was pretty much a Celiac diet. The doctor to have me sent back to Gastro and he will try and help me with investigations.
I went back on the diet. I had also applied for a new career at the NHS as a Trainee Radiotherapist previously as I thought I was getting better and I was given the job which started in February 2007.
March 2007
Dr. Mcstay – said I’d been tested for Celiac but not had biopsy agreed to do tests but said I would have to eat for 5 weeks for biopsy as been doing the diet. They said if I had been on the diet that long I may of healed my gut. I was still trying to eat low carb whilst doing the challenge so ate low carb ( I don’t know if maybe I didn’t eat enough in the 5 weeks to do the damage for celiac.
I started the eating gluten also stopped the Birth Control Pill as I felt too ill to go and get my next pack and thought it may help if I had a break. I had previously been off the pill a few years back and didn’t have a period for 1.5 years and just went back on it.
I was signed off work as too ill for the whole 5 weeks. My symptoms were much worse this time during the eating for the test. Also doctor said my thyroid was a bit low.
APRIL / MAY 2007
I returned to work had been back on my diet for a week – My results came through and it tested negative for celiac. I was very stressed as I still didn’t know what was wrong.
I spoke to a dietitn at work and she agreed to try and help – she put me on a anti yeast diet (still eating wheat etc )and said to ask for antifungal from doctor but doctor couldn’t give me a very long course it didn’t make much difference. She then advised me to eat normally maybe I was malnourished from diet and I just got worse and worse and my skin had started changing like it was dehydrated, shrivelled up like crepe paper and thin. I was eating chocolate as was down and was very nauseous after but felt like giving up as was so ill so kept eating wrong foods .
JUNE 2007
I was very ill eating foods that made me ill. Still off the pill. There had been stress at my family my Dad had left. I left work early as stomach hurt and was very nauseous went home and decided to try a antidepressant 20 mg Prozac on the Friday. There was a big row with Parents on the Saturday, I wasn’t really with it as on the tablets. On the Sunday night I woke up with a very bad headache like pressure in my head and nose I felt very strange I don’t know what happened but I wasn’t with it at all.
My face, neck, arm, back of hamstring around my bottom on the right side had changed. I had bad dioreah for a good week may be it was the shock – I lost quite a few pounds very fast as everything went straight through me. My skin Pale, clammy.
On the Monday I saw Dr. Palacian who advised me to stop the tablets I may have had a reaction (HE SAID I COULD STILL BE CELIAC). I became a lot more anxious and depressed following this as I was scared of what had happened and my family were caught up in there problems and didn’t realise what was going on. I couldn’t stand being at home as was getting panic attacks as it happened in my house so I stayed with my Nan. She was very shocked as I was so thin, I had a black mark down my right side of face a rash also on my face which she has a photo of .
JULY 2007
Occupational health referred me to Physiatrist and I explained what had happened. She advised me I didn’t have a mental problem although I was depressed due to what was happening. She advised me to see Endocrine and Dermatology as she said the mark across my face was a sign of autoimmune disease.
I was desperate to get better and back to work so I borrowed money to private to endocrine. I had blood tests and then after was followed up at southend hospital and the specialist said he had spoken to doctor Adey and I was depressed and nothing on the blood tests.
I then requested an Ultra sound as I had read about PCOS and it did show cysts on both ovaries but nothing on the blood tests prior to this.
(Previous doctor) Dr. Adey said I may have lock jaw but no one said anything about my neck or other limb problems.
DR.MARVRA
I decided to pay to go to a Neurologist as I was so desperate and knew Bells Palsy doesn’t affect one side of my body. I did think I had a stroke. Neurologist advised I needed Pituitary MRI, Parathyroid and various other tests. She said my reflexes were absent and told me to stop doing the diet as it may affect the testing but I couldn’t function without this diet. ( I had been eating wheat etc running up to seeing Dr. Marvra)
AUGUST 2007
Nerve Conduction Test – Normal – was on diet
Follow UP SEPTEMBER 2007
Dr. Banister -Neurology
I had to explain again from the start – I had been on the diet again and this time had reflexes. She said probably a bit of bells palsy, didn’t know what was wrong with my neck or limbs on right side. She also to refer me to Charring Cross for Fibromylagia but Doctor Adey wouldn’t refer me. She sent me to a Physio for bells palsy but it didn’t help.
SEPTEMBER 2007
Dermatology – Basildon Hospital I didn’t get to explain anything he quickly examined me and said no cancer and sent me on my way.
OCTOBER 2007
I became very depressed scared suicidal and was admitted to Basildon Hospital for one night and then referred to Taylor Centre. I tried to work with them as I know I am depressed and I am still down but not suicidal now. I was too scared to take antidepressant they wanted me to take as I was previously advised I could have had a reaction to the tablet and didn’t want anything else to happen. I tried the antidepressant Effofor, but it made my anxiety very bad and I was worried about what happened last time so I stopped it.
NOVEMBER 2007
Referred to Gene for PCOS – I was still very emotional as ill, kept eating foods as depressed, and very upset about my face neck and right side as not been diagnosed. I didn’t communicate very well with GYNE because of the state I was in. I asked about Metiformin as I had read this is to do with PCOS but was advised I had to be very fat or want to have a baby. No periods for the last 6 months.
I saw Occupational Health again and was advised to change doctors. I had asked Doctor Adey many times to refer me to chronic fatigue and did receive a letter confirming that he would but he never followed it up. So I decided to change doctors as I was getting worse and was closer to loosing my new job and felt even worse than before.
JANUARY 2008
Dr. Syed agreed to start from scratch and sent me for blood tests which showed high cholesterol. I was much more positive again. I also decided to see a chiropractioner as my neck was hurting all the time cant hold my head up properly and my bottom / leg was flat when I walked and ached with any resistance walking.
Chiropractioner said I had a wry neck, facial drooping, and weakness and said I should have a brain scan and also mentioned Carotid Arteries but he wouldn’t touch me he said something going on may be neurological. He wrote me a letter to take to dr. Syed. It also mentioned having a breast examination as I have implants and the right side has shrunk and aches when I lay on that side.
Dr. Syed referred for all Specialists.
Breast Ultra sound – implant looked fine but change in fat in breast, shrunk on right side and skin droopy.
Neurologist – Referred – back to Dr. Marvra
Dr. Marvra had the letter and it did say I was misdiagnosed with Bells Palsy – I didn’t get to explain anything Dr. Marvra said I don’t need brain scan you have too many symptoms which don’t relate to my department but she said she would send me to a Rheumatologist.
APRIL 2008
I was referred to Dr. Nuduka – Facial Reconstruction Surgeon for Bells Palsy only Specialist in the UK. He said he doesn’t think it was Bells Palsy and mentioned having a EEG but this was not mentioned to Dr. Syed in the letter.
APRIL 2008
Dentist couldn’t perform root canal as couldn’t open my mouth wide enough – x-rayed my jaw and said its in a spasm – sent me to Oral Surgeon
Dr. Sha Oral surgery
He was very nice and asked about my other symptoms. He said it sounds like you have a few things going on, which is why so many symptoms he said he wanted me to have a brain scan and some blood tests.
I was able to tell him every symptom, which I felt stupid telling other consultants. He said I don’t have bells palsy, I have facial, neck and limb weakness and it will get better. He also said I have some TMJ and gave me some 10 mg of Nortipline to help me sleep as my mouth is in shreds from biting gums. He said he will make me a gum shield. He tried to run a tests for (cushings syndrome / possibly food induced) as he said my skin has atrophied and is thin and fragile with bruising along with other relevant symptoms.
Follow up with Dr. Sha – My brain scan showed a cyst in the right side of my sinus in the area of the facial weakness he didn’t think this was the cause of my right sided weakness. Dr. Sha ordered blood tests for Cortisol to investigate Cushing’s Syndrome but the Sythechen test couldn’t be performed as it had to be requested via Endocrine.
Dr. Sha said he needs me to have a second opinion but I must tell the Consultant everything I told him as it was all important.
Rheumatology
This consultant was running an hour late I wasn’t allowed to explain anything. The consultant just said I am a Rheumatologist have you any swollen joints. The consultant couldn’t explain my neck and said about physo but I had tried this and it never has got better. A nurse came in asking about my periods due to results of urine sample but she was told to leave, I never heard anymore about that. I was upset and the reception said its probably as she is running late in her clinic.
Follow Up Oral Surgery
I then had my Follow up in Oral Surgery with a Consultant. My Dad came with me. There was nurses and doctors in and out of the room using the photocopier which was very off putting and I didn’t feel like the consultant had much time as he said to keep it short. He didn’t acknowledge my facial weakness or my neck and he said I am not saying nothing wrong but I don’t know what’s wrong. They didn’t carry out the Cushing Test.
JUNE 2008
I am currently being referred to a specialist in the Parry Romberg Syndrome, which I stumbled across whilst trying to help my self. I wrote to the specialist after contacting the PRS support group. He agreed to see me based on my symptoms and Cathy Rehill at my doctors has organised this referral.
I am struggling with the constant awkward feeling of my neck as it has no strength on the right side, I cant lift anything above my head as it locks into a more rigid spasm and also affects my shoulder.
I am back on the celiac diet as I ant function otherwise due to the many symptoms I get. I am struggling with the diet as I have other intolerances other than the celiac diet, sugar, yeast, dairy, fermented foods. I do have a letter from Mary McStay confirming that you can only have systemic Candida if you have an celiac, or other autoimmune disease and if immune compromised.
I am naturally worried about the diet I am doing as fruit is very important with diet but I then suffer the faecal impaction. I am now also concerned that maybe where I have been on and off the diet it has affected the tests that I have had but I can feel that I am damaging my body further every time I eat the foods that affect me. It is very difficult to stick to such a rigid diet especially when I am struggling to get around some days and have difficulty getting to supermarkets.
I am very upset about the affect this illness has had on my appearance, my skin is so dry dehydrated, loss of skin elasticity, facial drooping, twisted neck, hollow eye, wasting on nose, general loss of muscle tone all over , flattened buttocks, bloating all the time. I am hoping this will improve once I know what’s wrong and when I am treated.
The palms of my hands keep shrivelling up, drying out and going tight and then the skin flakes on and off throughout every day and this is really worrying me also. Along with the pain in the right side of my back. My skin has got so thin that when I rest my elbows on a table for a couple of minutes they really hurt and go bright red and look like I’ve fallen over. I have marks on my arms which are months old from blood tests, spots and cuts that don’t heal.
I also just went back to the ladies clinic for a second biopsy as they found HPV virus last year. They advised me that I still have this infection and normally the body gets rid of it but my immune system must be compromised as its still there. I have got to go back in 6 months for another check up.
When I eat wrong I have also noticed that my body seems to be swollen like I have water retention and my face and eyes are very puffy. I can also feel the weakness / wasting a lot more if I’ve eaten wrong. I have no quality of life, I don’t go anywhere as don’t feel up to it or due to restricted diet and not able to drink alcohol, I cant go to the gym like I did due to the weakness or wasting in my right leg neck and arm. Fatigued and never feel well, I have no libido or sensitivity at all and I still have no period.
My Parents are now being very supportive as they are concerned about my health and recent deterioration, which has given me the strength to try and stay positive that I will get to the bottom of this. I do appreciate the help I have had from doctors and specialists but it is frustrating as I seem to have a complex illness or maybe something rare, which is making this difficult to diagnose. I have been very patient and I have done everything I’ve been advised to do but this has gone on to long and I cant live like this much longer.
Thank you for support and for reading this document. I hope it makes it easier to understand what’s going on and why I am so upset when I visit the doctor.
Hello all
I’ve only just been referred this week to go see an endo so very much at the start of what I think will be a long journey.
I don’t seem to be a typical case of Cushings although I have “the hump” and some slow weight gain which is are the things that have gotten me referred.
Over the past umpteen years I’ve been going to the doctor with all manner of debilitating symptoms (mainly fatigue) and 15 years got diagnosed as B12 deficient and put on injections for it. Then after about 7 years I had to go back as symptoms worsening and was diagnosed as Folic acid deficient. Saw an improvement on taking the tablets but after a year was back to being utterly exhausted, waking at 3/4am every morning, aching everywhere in my body and multiple other symptoms that came and went. After pushing at the docs was diagnosed as low ferritin and put on iron tablets.
Over the next 2 years and ever increasing doses of iron we still couldn’t get my ferritin raised and I had started logging when I felt utterly gubbed and it seemed to be happening anything from immediately after getting my B12 injection to a few weeks after. Because it wasn’t easily definable as related to the injections, doctor didn’t want to make any association but it got to the point where I refused to get any more injections as I couldn’t face the 6 weeks of misery I knew would come after it so he agreed to put me on B12 tablets instead. And low and behold my ferritin started rising and I started feeling better. Luckily I was able to absorb the B12 orally as not everyone can do that. Almost all my symptoms disappeared except the sparse fluctuating periods, some vision problems and my reaction to eating sugar/carb food (Ok, I’ll admit it – biscuits) as I fall asleep at my desk sometimes directly related to what I’ve just eaten.
I believe a lot of what I was experiencing was down to my low ferritin and I’m actually feeling very good just now – but, since my blood has improved I’ve been slowly putting on weight around my middle (I only eat about 1400 calories a day so couldn’t understand it) and I’ve now got hump, and fine blond hair growing on my face. I’m 50 so doc had previously presumed I was just menopausal and that was what had stopped my periods but after 8 months one appeared. I had previously shown my hump to another doctor last year when I was there for back pain but was just told to sit up straighter at my desk. On showing my present doc the hump he said immediately he was going to send me to and endo.
So, I’m not sure what the outcome will be. I don’t seem to be a typical cushi as I don’t have a moon face and my weight gain has only been gradual and I actually feel fine. It was only at my partners insistence that I went to the doc as he kept saying my hump was getting bigger.
Does anyone have any advice on what I need to ask/say when I eventually see my endo?
Thanks
Pauline
ps, sorry, forgot to mention that I was only born with one kidney and also had an ovary removed due to a cyst.
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