Unhelpful GP

[Lotties]

Hi all
I'm rather concerned.
Background.
Female, 56, 5'7", 109kg (was 122kg in July) Diagnosed with sarcoidosis 7 years ago. Meds - prednisolone 10mg (12 months) and spironolactone 50mg. Methotrexate and other drugs, tried but unsuitable for me.
My weight has been steadily rising for 10 years despite my best adherance to std advice and 3 year foray into raw vegan. Polyunsaturated fats are avoided as much as possible.
Now my blood pressure has started increasing 140-165 (systolic); liver enzymes continue to been slightly elevated.
Consultant has been hinting to my GP for the last 3 years that I may have fatty liver and that may indicate diabetes.
No action by GP and they have now retired.
Trawling the net and reading thousands of posts and clinical studies for sarcoidosis and weightloss, I finally tried a dietry method that actually stopped me craving **** food that I didnt normally eat intermittant fasting 18:6; no weightloss. Then I moved to OMAD with a substantial breakfast of 1600kC plus a five day fast which was easy. After the fast my body didn't fancy periods without food and OMAD and IF was out.
Onwards to lowcarb and Keto with OMAD again. Progress! Lost a lot of water weight and ankles are now visible for the first time in 4 years; shoes down 1 sizę. Actual weightless over 6 months about a lb a week but extremely slow now maybea lb a month. Calories are up though and saturated fat a large part with minimal starchy food, 1oz, ~1lb of green veg < 20g carbs and 60g protein
daily.
I haven't been interested in keto per se, intending to improve my metabolic flexibility and tolerance to carbs. To that end I bought a TEE2 plus BG meter plus 50 tests strips to give me a bit of feedback.
Well, I was SHOCKED! After a month of IF and 2 weeks of low carb, my fasting bg is normally 6.5, never lower than 5.5. ( understand it may be a low carb adaption but does not lower if more cars are eaten for a few days) PP1 & PP2 are of more concern, with PP2 mostly being higher than PP1. if I eat a sweet (test purposes, 6-9g sugar) within 10 mins bg is over 8.8 and I get hypo symptoms a few minutes later despite bg still being high.
Still using the meter for monitoring until I measured after a a small fried breakfast; egg, sausage, 2 bacon and 1tsbp baked beans. 2 hours later bg was 199 (tested 3 times and control checks made)
Made appointment with GP and expressed concerns. He wouldnt discuss until he'd done his tests. When I called, I got the message no action! He had not even done a random bg only Hb1ac. when I called to discuss (weight gain, fatigue, blurry eyesight, sarcoidois damage to kidneys, foamy wee, belly obesity, blood pressuré rises, medication risk etc.) He told me that Hc1ac was gold standard and was great at 38 (which is good) and he dismissed any further discussion except to offer regular Hc1ac tests in future!
I feel betrayed. Fasting bg at my consultants 4 days later was 6.5 and confirmed 38. I won't see him for another 2 months.
I have to pay Vat for test strips and am now reliant on Dr Google for medical advice. Most scientific tests show this reliance on Hb1ac is misguided and i have to pay Vat for test strips, stillas a bonus.
I fear that if I don't prepare all of my own food (not possible) I will be inadvertantly increasing damage to my body in addition to the sarcoidosis. I haven't got any support as I live alone.
Any suggestions? Is it worth raising money to see a private specialist? I don't want to wait until it totally too late. Warning signs have been ignored by my GP for years already.
Thanks

 

[urbanracer]

Hi @Lotties

Welcome to the forums.

You write at the outset that you are taking Prednisolone. Steroids use will raise your blood sugar levels, lessening any downward influence from the strict diet control.

 

[Lotties]

Thanks, Urbanracer. Guess ill need to be extremely disciplined, if i can best cravings and pressures. Information overload atm
I'm thinking to try 2tbps vinegar before eating and walking after as part of an 80/20 approach as they seem pretty agreed upon to help. Not easy to implement for me wit work (and current demeanor )

 

[xfieldok]

I am being weaned off prednisolone, they definitely cause increased appetite and weight gain.

 

[Brunneria]

I'm a third voice to say that the steroid may be a big part of the problem.

I'm not familiar with sarcoidosis, its symptoms and treatment (except that I know it can be nasty, and affect all sorts of different body functions and parts). So I don't know if you are likely to be on the Pred for life, or whether it is something that will reduce over time and only be used during flareups.

Maybe have a good research on the subject, and ask for a referral to someone who will actually take your concerns seriously.
Wildly swinging blood glucose (and you can bet your bottom dollar that your snapshot prick tests are not giving you the whole picture) can cause some real feelings of illness, and 'hypo' even if the bg is shooting up, not down, or simply dropping fast but not in the hypo range. Your consultant should be able to identify whether it is the steroids to blame or something else, and investigate, if necessary (also the timing and duration of the bg peaks) .

You may even be offered some medication that is timed to balance those peaks.

Good luck, and please let us know how you get on?

 

[Lotties]

Thanks, all.
Prednisolone looks like it's here to stay for a while at least at 7.5mg.
Research...
...what haven't I read that's not behind a pay wall on sarcoidosis and a far bit on diabetes but there is so much conflicting info and opinions, especially in the detail; I get lost trying to put it to RL use.
Sarcoidosis actually has a lot in common with diabetes- damage start years before diagnosis & often no obvious symptoms without testing.

Currently, my consultant is a Rheumatology not metabolic specialist so I'll need to try for a referral from them when I get my next 4 mins. in Feb.
I have a Freestyle Libre on order to get a better picture as well.

 

[Brunneria]

I was actually thinking about you reading up on anything you can find about steriods and blood glucose impact, and steroid induced diabetes.

If nothing else, you can start giving the information to your doc, and nurse, and anyone else who blithely informs you that there is nothing going on...

 

[Lotties]

With the sarc, shown by a gallium scan, it creates inflammation and possibly fibrosis all over my body, along with other symptoms such as poor sleep and very low body temps (35.5-36.3C), I am worried about endocrine insufficiency and diabetes type 3C. I'd prefer to speak to a specialist earlier rather than when the number's had reached irretrievable.

 

[Lotties]

Bunneria.
On steroids. Thanks for the pointer on what to research. I do get sidetracked a lot!

 

[Lotties]

https://care.diabetesjournals.org/content/36/9/2822
From the basic hints and small sample size, it tends to indicate an increase of ~8% in basal bg for low-dose prednisolone, if i am reading it right, which ties in with what I am seeing, generally. It also mentions metformin as a mitigator. This is something I need to bring up with a knowledgeable and receptive prescriber if I can get in front of one.
Thanks for the pointer!

 

[DCUKMod]

https://care.diabetesjournals.org/content/36/9/2822
From the basic hints and small sample size, it tends to indicate an increase of ~8% in basal bg for low-dose prednisolone, if i am reading it right, which ties in with what I am seeing, generally. It also mentions metformin as a mitigator. This is something I need to bring up with a knowledgeable and receptive prescriber if I can get in front of one.
Thanks for the pointer!

Lotties - I won't say anything about prednisolone, as other have said plenty, however, Sarcoidosis is an autoimmune (AI) condition. Sometimes AI conditions happen solely as one thing, but once you have one AI condition, you can be at greater risk of others. Has your rheumatologist done any broad blood panels, to look for other AI conditions at all?

So many AI conditions can throw up weird and wonderful symptoms. Sometimes things come down to a process of elimination.

 

[Lotties]

Lotties - I won't say anything about prednisolone, as other have said plenty, however, Sarcoidosis is an autoimmune (AI) condition. Sometimes AI conditions happen solely as one thing, but once you have one AI condition, you can be at greater risk of others. Has your rheumatologist done any broad blood panels, to look for other AI conditions at all?

So many AI conditions can throw up weird and wonderful symptoms. Sometimes things come down to a process of elimination.

I guess he did as I pushed for referral to Royal Free who has a specialist clinic within Rheumatology. I hear the Brompton is slightly more open about its process. I was subject to a barrage of tests and scans over several months as Sarc can only be diagnosed by eliminating other conditions. They are still not sure of the cause or even if it is an AI disease or more than one disease put in the same bucket. It is certainly is a derangement of the immune system but there is genetic bias across groups as to which organs are hardest hit.
I have had apparently comprehensive blood panels since diagnosis every six months and now every two due to prednisolone. My ALT is still above range marginally this month and both ALT & AST went up and were higher two months ago (when I was fasting with moderate low carb). My calcium and sodium are always top of range with a varying EGFR around 60. ESR is often higher than range.
Good point though as I have no decent idea of other AI conditions apart from swelling and deformity in some ofmy joints which have been professionally deemed osteoarthritis.

 

[Lotties]

Woot! Surprise delivery today of my Freestyle Libre well ahead of the New Year delivery date!
I'm hoping to get some real world data rather than Low-carb as I don't think my sister is on-board with my dietary wishes for the Xmas break.
Fingers crossed the sensors will work first time...

 

[xfieldok]

Remember it takes at least 8 hours to get acclimated to your body, I am wearing mine the day before I start the new one tomorrow. Once activated the reader takes an hour to come on line.

Also remember the readings are 15 to 20 minutes behind. It is most accurate between 4 and 8. If your readings are way over, check with a finger prick.

 

[NicoleC1971]

Thanks, all.
Prednisolone looks like it's here to stay for a while at least at 7.5mg.
Research...
...what haven't I read that's not behind a pay wall on sarcoidosis and a far bit on diabetes but there is so much conflicting info and opinions, especially in the detail; I get lost trying to put it to RL use.
Sarcoidosis actually has a lot in common with diabetes- damage start years before diagnosis & often no obvious symptoms without testing.

Currently, my consultant is a Rheumatology not metabolic specialist so I'll need to try for a referral from them when I get my next 4 mins. in Feb.
I have a Freestyle Libre on order to get a better picture as well.

Sorry for all your frustration and get your concern. You have an inflammatory condition being treated with steroids which is causing both insulin resistance and therefore cravings/weight gain. Your pancreas is keeping up with the demands put upon it evinced by the hba1c but may still be working too hard and if you do have a fatty liver that is a pre cursor to type 2 (the long silent scream given that the usual liver test won't show a problem).
Your freestyle libre may provide you with some clues about whether your blood sugar is going high and staying high 2 hours after a meal for example but it could also show that for now you are keeping things on an even keel. A fasting insulin test (homa-IR) or liver scan may give you some indication of your metabolic health so you could ask for a heptology referral (google fibroscan) but don't forget that there are a significant proportion of people for whom being fat doesn't cause metabolic damage although it isn't great for their joints and may lead to heart failure.
I found this link on YouTube about 'natural solutions' (yes they have something to sell Education Beats Medication a book):
You Tube - search for Sarcoidosis Diet Plan and Natural treatment options
https://www.amazon.co.uk/Against-All-Odds-Prescription-Medication/dp/1492935387

Best of luck and try not to focus on the scales as much as your middle circumference as this is a better indicator of your metabolic health and let us know how you get on. I am type 1 so mine is auto immune but I did find that steroids for a sore shoulder really shot my blood sugars right up (needed double doses of insulin). I pesonally think low carb, high fat, moderate protein works best to tame cravings. Btw I do not weight myself as it doesn't really give me any useful info about my health, nor do I count calories for the same reason!

 

[Lotties]

Sorry for all your frustration and get your concern. You have an inflammatory condition being treated with steroids which is causing both insulin resistance and therefore cravings/weight gain. Your pancreas is keeping up with the demands put upon it evinced by the hba1c but may still be working too hard and if you do have a fatty liver that is a pre cursor to type 2 (the long silent scream given that the usual liver test won't show a problem).
Your freestyle libre may provide you with some clues about whether your blood sugar is going high and staying high 2 hours after a meal for example but it could also show that for now you are keeping things on an even keel. A fasting insulin test (homa-IR) or liver scan may give you some indication of your metabolic health so you could ask for a heptology referral (google fibroscan) but don't forget that there are a significant proportion of people for whom being fat doesn't cause metabolic damage although it isn't great for their joints and may lead to heart failure.
I found this link on YouTube about 'natural solutions' (yes they have something to sell Education Beats Medication a book):
You Tube - search for Sarcoidosis Diet Plan and Natural treatment options
https://www.amazon.co.uk/Against-All-Odds-Prescription-Medication/dp/1492935387

Best of luck and try not to focus on the scales as much as your middle circumference as this is a better indicator of your metabolic health and let us know how you get on. I am type 1 so mine is auto immune but I did find that steroids for a sore shoulder really shot my blood sugars right up (needed double doses of insulin). I pesonally think low carb, high fat, moderate protein works best to tame cravings. Btw I do not weight myself as it doesn't really give me any useful info about my health, nor do I count calories for the same reason!

Thanks, Nicole.
I have a look at that stuff. I'm so loving this forum as there's so much experience and information with no cookie-cutter suggestions.
I'll try to get my consultant team for the referral/tests. My GP has closed down the conversation.
LCHFMP has at least moved my scales in the right direction and I can eat tons!!