Anyone else with Cushing's?

[luceeloo]

Just wondered if there was anyone else in here with Cushing's - especially since diabetes seems to be one of the side effects?
I'm going through diagnosis at the moment, which is a slow, slow process. My Dexamethasone Suppression Test has come back and in my GP's words, "You're on a definite path to Cushing's diagnosis". I am textbook - I have, or have had every single symptom for years. But as is often the case, if I'd mentioned it to my GP (especially my now-retired GP) his answer would have been "You're fat, lose weight". I only ended up getting tested as an after-thought by the Endocrinologist at the hospital.

The one thing that I'm struggling mostly with is the inability to lose weight. I know that I've been unable to lose weight as I've been on a diet for the past 5 years, but lately I've been going to the gym three times a week and doing keto... and managed to lose absolutely nothing. I feel much fitter, but my heart rate and blood pressure are still high (cheers cortisol!). I'm now telling myself that I'm doing this for health rather than weight loss - especially if I do have to have pituitary surgery later on, but it is a little demoralising to work so hard and see very little result on the scales.

Does anyone else have experience of this?

 

[JoKalsbeek]

Just wondered if there was anyone else in here with Cushing's - especially since diabetes seems to be one of the side effects?
I'm going through diagnosis at the moment, which is a slow, slow process. My Dexamethasone Suppression Test has come back and in my GP's words, "You're on a definite path to Cushing's diagnosis". I am textbook - I have, or have had every single symptom for years. But as is often the case, if I'd mentioned it to my GP (especially my now-retired GP) his answer would have been "You're fat, lose weight". I only ended up getting tested as an after-thought by the Endocrinologist at the hospital.

The one thing that I'm struggling mostly with is the inability to lose weight. I know that I've been unable to lose weight as I've been on a diet for the past 5 years, but lately I've been going to the gym three times a week and doing keto... and managed to lose absolutely nothing. I feel much fitter, but my heart rate and blood pressure are still high (cheers cortisol!). I'm now telling myself that I'm doing this for health rather than weight loss - especially if I do have to have pituitary surgery later on, but it is a little demoralising to work so hard and see very little result on the scales.

Does anyone else have experience of this?

My mom's not diabetic, and her Cushings is due to medication. She's cut back on the carbs, but isn't really shedding weight. Just a little bit, but I'm thinking she dropped waterweight; She is retaining less water, has less trouble breathing, and can walk longer distances than before... So it does have a impact.

 

[Claire87]

Hi, it's nice to find another Cushie. I hope you're doing okay.

I've recently been referred to an endocrinologist, and it's looking like I've had Cushing's for 32 years. Well, the buffalo hump can be seen in my school photos, and I know the weight gain happened when I was 10 after I fractured my skull. I haven't had the tests, but I have 28 symptoms of Cushing's atm, and I 100% expect to see a big old tumour on that MRI (if I ever get one). I've also got diabetic retinopathy and liver disease this week apparently, so I think I'm deteriorating too quickly. (An article from King's College claims that most Cushing's patients don't live long enough to get diabetic retinopathy, so I think I'm screwed tbh).

It's scary. My body is rapidly falling apart, and no one seems to have any answers for me other than 'diet', which is weird since I'm only a stone over my BMI, and I barely eat at all. Maybe it'll get better when I see a specialist. I've got a month to go before that.

I have managed to shift that weight over the years though with dangerous low fat dieting, but it always came back. My best weight loss was on the low carb diet because it wasn't unhealthy, and it helped with the diabetes too, but I had to go way low to zero carbs to get into ketosis, and then stick to under 30g carbs a day to lose weight, and I couldn't maintain it without remaining below 50g carbs a day, which isn't easy. But it does give you diabetic remission as well, so it's worth doing in the long run.

Losing weight never got rid of moon face or the big tummy though. I still had my fat face and pregnant belly at 9 stone (I'm 5'8, so that's a bit underweight for me). Losing weight with Cushing's just gives you smaller boobs and stick legs. I dropped a couple of dress sizes, and five stone a few times, but at 9 stone, I was still wearing a size 16 around my waist.

Ah, memories of being 9 stone, doing 100 sit ups a night on a diet of a yogurt and an apple a day while walking 6 miles a day to work and back, and then having my doctor tell me I was fat and lazy, and it was all my own fault when I enquired about my odd body shape... I've since changed doctors, albeit 30 years too late.

It's worth noting that it's tough to exercise and low carb for the first month, especially with Cushing's when your energy is lower anyway. What I read about Cushing's is that it's safer to do Tai Chi or swimming as exercise (low impact on the bones) to avoid breaking anything. Also, make sure you get a lot of Calcium and Vitamin D in your diet. And with low carbing, you skip the exercise on the ketosis days.

So for me less than 30g carbs a day, high calcium, low vit D for the diet, and some light dancing and swimming as exercise. I'm not sure what to do with the Metformin. It doesn't seem to do anything for my blood sugar, and my doctor reckons it needs 50g carbs, so I don't know if I can take it on the low carb diet, probably not.

I'm just restarting on the dieting again after a lot of horrifying test results because I thought I was still in diabetic remission until I changed doctors, and now it's all brain tumours and liver disease, which is so much worse than I imagined.

 

[m_i]

Your post @Claire87 made me want to cry. I’m sorry you are in so much pain.
I have hypothyroidism and found it impossible to lose weight. I had been given a prescription of thyroxine and it didn’t help at all. I was suffering for 20 years from reverse T3 because the T4 prescribed was not turning into T3. I self diagnosed myself and bought T3 from the internet. Finally got an endocrinologist to back up my findings only to find out that T3 is too expensive for the NHS yo prescribe (pharmaceutical companies are ******** but they are slowly paying for there criminal behaviour ).
I lost weight from doing trampoline classes at the gym.

Edite by Mod

 

[ickihun]

My son had clear symptoms and to my horror he'd stopped his VD3 and multivitamins. Since returning he's lost over a stone and the red stretch marks are fading away.

 

[carol43]

Your post @Claire87 made me want to cry. I’m sorry you are in so much pain.
I have hypothyroidism and found it impossible to lose weight. I had been given a prescription of thyroxine and it didn’t help at all. I was suffering for 20 years from reverse T3 because the T4 prescribed was not turning into T3. I self diagnosed myself and bought T3 from the internet. Finally got an endocrinologist to back up my findings only to find out that T3 is too expensive for the NHS yo prescribe (pharmaceutical companies are ******** but they are slowly paying for there criminal behaviour ).
I lost weight from doing trampoline classes at the gym.

I could have written your reply. I had a test through Blue Horizon that showed that I do not convert T4 to T3 but didn't have reverse T3. Because I take 3/4 of 25mcg tablets a day my TSH is almost non-existant - Dr not happy about that but I am.

Quoted content edited by Mod

 

[DCUKMod]

I could have written your reply. I had a test through Blue Horizon that showed that I do not convert T4 to T3 but didn't have reverse T3. Because I take 3/4 of 25mcg tablets a day my TSH is almost non-existant - Dr not happy about that but I am.

Quoted content edited by Mod

Carol, did you have the DOI2 gene test, or the full thyroid panel, and the non-converter status concluded from your results?