Cushings/LADA

[Ali H]

Well hopefully I am nearing the end of the diagnosis journey with my GP now convinced I have LADA based on food diaries, readings and response (or in my case lack of) to oral meds, also rapidity of decline despite increased exercise, decreased calories and carbs. Having seen the endocrinologist I have to have my thyroid checked, a fasting cholesterol done and finally a 24 hour urine collection to rule out Cushings!

Has anybody else had Cushings raised as a possible problem and had to have the cortisol test done?

Once all of this has been done hopefully I will be changed over to Victoza in the first instance, as they want to see if this has any effect at all, and if not, then it seems like it will be basal/bolus insulin. I think another LADA member has recently been placed on Victoza first too, is it Paul1976? How are you getting on Paul?

I am fed up with every meal causing ridiculous rises, a 12g of carbs breakfast smoothie still leaving me up in the 9s 3 hours later for instance. Sheesh, I want it all to end now and to find some degree of normality.

Ali

 

[tree-peony]

Hi Ali,

May I ask you a personal question? Are you overweight? and how has your weight fluctuated sine Oct 2010?

The reason I'm asking is because I'm trying to work out if there's a possibility on me being 1.5/LADA, or just a bloody difficult Type 2!

Thanks

 

[Ali H]

Yep I am overweight and have been since early teenage years. The rub? I played every sport for my school except hockey which I hated due to being a leftie! I continued to play Badminton and Tennis at club level until 6 years ago when I suffered a prolapsed disc after gynae surgery. I have always followed a low fat diet because that was what was always drummed into you.

Then suddenly I lost 2 1/2 stone along with all the other symptoms and along came the diabetes diagnosis. The gliclazide hasn't held it at bay for long then they added Metformin SR and then Sitagliptin but to no avail. I have good overnight fastings but the minute I eat, even small amounts of carbs, wham, it shoots up. They have decided I have a small amount of basal going on but my bolus response is non existant.

Very very frustrating, I have been sticking to under 100 grams of carbs since early March along with calorie control and increased exercise and nothing makes a jot of difference. As I said above, a greek yoghurt smoothie sends it soaring for hours, I have tried everything and I am permanently hungry because I am just so fed up trying to find things that don't rocket my sugars. Salad and veg feature heavily lol! It is extremely demoralising to come on here and read about people upping exercise and lowering carbs and being constantly within range. I just can't get that no matter what I do.

Ali

 

[tree-peony]

I know what you mean. Mine just refuses point blank to go below 12 and normally runs at about 16, but I don't seem to spike much as long as I'm eating carefully and doing plenty of exercise. But then I suppose I've not been doing it THAT long.

Take today for example, 16.9 on waking, then I had a breakfast which was 15g jumbo oats with ground almonds, coconut and flax seeds. 2 hours later it was exactly 2 points higher, but 30 mins exercise brought it down to 15.4. Lunch was ham and cold chicken, with celery, apple, walnut and mayo, and some cucumber. 2 hours later it was 15. Another 20 mins exercise only brought it down to 14.5.

My GP doesn't seem concerned :|

 

[Paul1976]

Hi Ali!

I'm on something similar(Byetta),I wanted Victoza but my PCT only do Byetta which is a shame because it means 2 jabs a day as opposed to 1 a day on Victoza,But hey Ho!
My levels have fell from 20mmol/l-33mmol/l to around 7-10mmol/l which is great but I'm having trouble with nausea and vomiting and I can only eat around 2 small snacks a day which means I find keeping carbs very low quite easy but I'm losing weight at an alarming rate so not sure how long I can stay on it TBH but I have been told that the nausea symptoms do wear off eventually so I going to stick with it for now.The injections themselves are painless with a 5mm 31g needle so nowhere as bad as I thought they might be(I'm no fan of sharp things)

Paul :wink:

 

[Ali H]

Hi Paul, hmmmm yes I have heard that that is a side effect and it does concern me because I have had gastric probs pretty much all my life, from being a projectile vomiting baby to IBS as an adult. I had Campylobacter in 2000 whilst on hols in Austria and since then I have had the IBS.

Anyway, I will give it a go and see what happens. Aw I bet you are feeling so much better with lower levels, I am very sensitive to my level rises and within minutes of eating I feel drunk and have a foggy head, I hate it. But I have to eat because I work part time, have dogs and care for my parents in our own home oh and have a partner with depression, so life is pretty busy. Dad has had thyroid cancer so we have had half a dozen trips to Bristol for his treatment. In other words I do a lot of running around as well as walking the dogs each evening so I need energy. With the blasted sugar just floating around in my blood I have been feeling soooooooooo tired, so now I just want this resolved once and for all.

Luckily, needles hold no fear for me, both of my parents take Lantus (adopted so no genetic link) so I am well versed in giving injections, hypos etc etc.

I wonder why they are trying Byetta and Victoza now for LADA cases instead of going straight to insulin which is what they would normally have done?

Ali

 

[Ali H]

Tree Peony I would be firing your GP and finding another one. Those figures are way too high for them to be ignoring and 2 metformin a day will not rectify those levels.

I would bang his door down until he takes you seriously, go armed with a food diary and lots of readings, that is what I did. I am lucky enough to have some private health cover so I saw an endo privately within a week of requesting an appointment with him. Otherwise it is a 3 month wait here! Madness.

I tried all the things that are meant to be low GI such as porridge, weetabix etc, then moved on to Bergen toast or a smoothie for breakfast, also scrambled eggs and bacon, obviously not on the same morning. Nothing worked, the low GI stuff was horrendous and gave me mid teens readings, come to think of it so did the teeny tiny Bergen slices some 3 hours later!

I am sorry but I point blank refuse to ultra low carb, but having seen absolutely no improvement by cutting my carbs to under 100 a day, upping my exercise and slapping on 2 more sorts of meds, it seems nothing I do has an effect anyway. Had I seen a drop during the last 2 1/2 months I might have been more motivated to cut further but no, nothing, so it seems I am flogging a dead horse or in this case, a dead pancreas!

Ho hum.

Ali

 

[tree-peony]

tbh I'm happy to stick with it for a while longer. I had to change to SR about 3 weeks ago and started on one a day and have only JUST got back to 3 a day. I really want to continue with diet and exercise (as well at Metformin) for a while longer and just give it all chance to settle.

 

[Ali H]

Hope you get sorted. I would have thought you would be seeing some improvement now it being 6 weeks since diagnosis though?

Ali

 

[tree-peony]

Thanks Ali

 

[))Denise((]

Hi Ali

I had tests for Cushings when I had chronic fatigue. I was looked at to see if I had new stretch marks, a slightly humped back and thin skin. I also had to do the 24 hour urine collection. I'm sure you have googled for symptoms, and this seems to sum it up http://www.netdoctor.co.uk/diseases/fac ... ndrome.htm

I didn't have cushings, but was tested for Vitamin D deficiency, and this was causing the tiredness.

 

[smidge]

Hey Ali!

I had the cortisol test done prior to my LADA diagnosis. I was losing weight rapidly so the GP decided to do a whole series of tests to rule out all sorts of things. I think the cortisol test was for Addisons. GP said blood for cortisol test had to be taken at a certain time of day - 9.00am - I have no idea why! It was a fasting test. I had 6 vials of blood taken at the same time and was very bruised - the hospital lost the blood samples so i had to have it all done again the following week :roll: Do you know, I'd forgotten all about the cortisol test - I think I must have blanked it out :lol: There were several tests for hormones too. I really can't remember them all. The GP said he needed to do them even though he didn't believe there was anything wrong except diabetes because he couldn't get a consultant referral until all the other tests had been done. I now know that was nonsense, because the consultant told me!

I don't know why they are starting to recommend byetta and victoza for LADA - it seems daft when insulin works and is inevitable in the end. If you ask your consultant or GP could you post the response, please - I'd be really interested to know. My consultant put me on intermediate insulin immediately (even before the LADA was diagnosed as he just wanted to get my BG down and my weight up - i was becoming severely underweight). A few weeks later, the rapid-acting insulin was introduced and i've never looked back. LADA was diagnosed a couple of months later after positive GAD tests.

Hope you get sorted soon.
Smidge

 

[Ali H]

I have to collect wee for 24 hours, charming! I believe high cortisol indicates Cushings, I presume low is Addisons. Had a dog with Cushings and oddly enough vet wants to test my current scottie for it. Will ask GP and report back re Byetta etc.

Ali

 

[Freya]

Ali,

Hello I was just hoping you could help me. I am currently being investigated for cushings......cortisol levels from Urine collection being over 670 on three separate occasions. I guess I am just wanting to talk to someone who has also been investigated as having cushings as a possible diagnosis. What were your levels like? and what was the eventual outcome.

Thank you

Freya

 

[ShellyC23]

I was diagnosed with Addison's Disease 30 years ago and LADA in February 2011. As they are both auto immune diseases it is not uncommon to have both together. I had blood tests and urine collection many years ago but unfortunately can't remember and result numbers. Hope you get a diagnosis soon - it's awful waiting and wondering what it can be.


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[alohanicky2009]

Just reading this post, I already had diabetes but if I remember I started to loss weight, very tired , very thin arms and legs but a round face which are visible signs of cushings, had to collect urine for 24 hours I filled two containers ( the ones that you buy car oil from 5 litres? And I could have filled a third but felt embarrassed with the two, lots of blood tests , I did have high levels of cortisol but was not di agonised with cushings I also had an MRI scan to look at the pituitary gland, problems which I am not sure is linked in cushings, anyway it was felt that thankfully I did not have cushings but my high levels of cortisol was due to stress and hyper actitivy (I never slept) I was a workaholic and had 10 jobs then. I slowed down and yes I still don t sleep well , bit of weight gain I am now double what I was and I am still only 57 kilos now, if you do have cushings I remember the consultant was very positive with treatments and getting me back heathy,


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[mbebrown]

I am sitting in hospital after my cushion disease operation had it Monday at Sheffield teaching hospital
If you would like to know more just ask
I had urine test tablet test mri scan ctrl scan
Pituitary nasil test ( up your vein in gron to your brain ) test
So any help just ask

 

[mbebrown]

Three weeks on the cushion side is getting better But operation side still got headache

 

[jane12]

Hi, Freya,

I was tested for this but did not have it although I had some symptoms. The article from Mayo Clinic on Cushings has a kind of checklist of questions you might want to answer in advance of your testing

http://www.mayoclinic.org/diseases-conditions/cushing-syndrome/basics/symptoms/con-20032115?p=1

Note also drugs in article to discuss

 

[jane12]

Is the human form of cushings the same as a horse gets , as one of my horses is borderline for cushings? He has Angus castus powder in his food to help balance his hormones, and hasn't progressed to actual cushings yet.