Private Endocrinologist - In need of advice

ketointheuk

Active Member
Messages
40
Type of diabetes
Prediabetes
Treatment type
Diet only
I have a private appointment next week. And to say I'm terrified does not deliver.
I am terrified cause I have got used to the condescendence of GPs when voicing my concerns about my weight gain in the last 2 years with a simple "you fat pig just eat less."

I ate less. I lost 35kg at 1200kcal per day on keto. And then I stalled at 1200kcal. And then i started to gain at 1200kcal.
I have been tracking my food for all these 6 years so I both understand the "fatlogic" scepticism and my own frustration.

Since going back to school in september what could be described as my "weight set point" went just up. I put on 6kg since, whilst always being in ketosis (which looking at lipogenesis factors and paths, should always require insulin, which being in high ketosis 3mmols+ and low glucose 4smmol) shouldn't be possible.

Yet here I am.

I had to cut down foods cause one day cheese was making me put on weight, another it was cauliflower, another it was parma ham.

I am dreading this appointment now yet I am aware this is the only thing that can still help me.

I am looking for advice on tests to ask for, and the help to ask for and how to ask it, cause I'm so afraid of being dismissed, cause in all honesty I know how *I* was dismissive of anyone telling a story similar to this. I would just think they were lying, possibly to themselves, they weren't really tracking, they didn't likely know what they were actually eating.

But i have years of My fitnesspal complete data, i weight food never guess it, I have glucose and ketone measurements to show trends, I don't make sense based on that data... how can an endocrinologist help me figure things out?

Thanks for any advice, and for enduring the rant <3
 

xfieldok

Well-Known Member
Messages
4,182
Type of diabetes
Type 2
Treatment type
Tablets (oral)
What was your last hba1c? I doubt you need insulin. Can you tell us what you eat in a typical day?
 

ketointheuk

Active Member
Messages
40
Type of diabetes
Prediabetes
Treatment type
Diet only
What was your last hba1c? I doubt you need insulin. Can you tell us what you eat in a typical day?
Hba1c always fine, 37mmol/mol in october. even in 2013 I was suspected of prediabetes it didn't show in a1c cause if anything I always had lower glucose (especially after eating) just not low enough to have actual hypos symptoms so it was mostly ignored. I will try and get an OGTT with Insulin cause all the signs crossreferencing glucose and ketone value suggested hyperinsulinemia in the last few years still.

Because of the sudden rise in weight since september (which realistically seems connected to cortisol as my sleep severely suffered from going back to school) I have eliminating foods over foods cause anything could cause weight gain, and even the supposed "water weight" would not just get down, it would stabilise and then become the new normal.

I also understand the blame on coritsol for weight gain is increased hunger which would then lea to eat more, but I haven't allowed that. Coming from eating disorders I have actually noticed in the last year I got a true grasp and understanding of hunger and I am not eating for anything other than "fuel".

For the last month I have basically been carnivore, but based on eggs, cause steak, burgers, any meat, will make me put on weight too. So it's really, eggs in beef tallow or butter, and cream.
 
M

Member496333

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Thanks for the tag @Jaylee.

I'm preoccupied with other stuff right now, but a couple of brief thoughts to get started.
  1. You need a fasting insulin and/or c-peptide test in order to determine circulating insulin. Setting aside the diet, elevated insulin will make it difficult or impossible to lose weight. This doesn't necessarily have to correlate with glucose. You can still have elevated insulin regardless of the diet and blood glucose.
  2. Lipogenesis does indeed require insulin in order to make fat from glucose, but dietary fat can be deposited in fat cells independently and does not require the help of insulin in order to do so. In other words, too much dietary fat can still make you fat.
Sorry for the brevity. I will have a further think later and return if anything springs to mind.

EDITED: if you are registering a high level of ketones then that all but rules out high insulin. That might leave too much dietary fat as a culprit.
 
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xfieldok

Well-Known Member
Messages
4,182
Type of diabetes
Type 2
Treatment type
Tablets (oral)
I am on steroids and despite remaining keto throughout I still gained over a stone and a half. I reckon my weight gain would have been over 4 stone.

Why are you taking cortisol?
 

ketointheuk

Active Member
Messages
40
Type of diabetes
Prediabetes
Treatment type
Diet only
Thanks for the tag @Jaylee.

I'm preoccupied with other stuff right now, but a couple of brief thoughts to get started.
  1. You need a fasting insulin and/or c-peptide test in order to determine circulating insulin. Setting aside the diet, elevated insulin will make it difficult or impossible to lose weight. This doesn't necessarily have to correlate with glucose. You can still have elevated insulin regardless of the diet and blood glucose.
  2. Lipogenesis does indeed require insulin in order to make fat from glucose, but dietary fat can be deposited in fat cells independently and does not require the help of insulin in order to do so. In other words, too much dietary fat can still make you fat.
Sorry for the brevity. I will have a further think later and return if anything springs to mind.

EDITED: if you are registering a high level of ketones then that all but rules out high insulin. That might leave too much dietary fat as a culprit.
thanks I've taken notes of these, I already wanted to try and ask fasting or better OGTT with insulin

Intuitively I thought the same about dietary fat but I have gathered sources for the last 6 months and everything from malonyl coa to PDH/ACC seem to activate with insulin or at least with glucose in the case of ChREBP. Could you point me to a source /step-bystep on anabolism and simply put "fat storage" in the presence of lipids only? Cause I've been breaking my head over it for the last year and testing based on the kekwick and pawan studies did point reasonably towards the idea that fat alone would not make us go from ampk to mtor basically, so if you can point to the missing piece to explain what activates storage in a "fasted" state I would be beyond grateful
 

ketointheuk

Active Member
Messages
40
Type of diabetes
Prediabetes
Treatment type
Diet only
I am on steroids and despite remaining keto throughout I still gained over a stone and a half. I reckon my weight gain would have been over 4 stone.

Why are you taking cortisol?
sorry I mis-spoke. I don't take cortisol, but I hve reason to believe from observations that my cortisol levels might have beenrising due to poor / lack of sleep and insomnia since september 2019
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
Please have your thyroid checked, as well as vitamins and minerals.

A poorly functioning thyroid can play absolute havoc, being at the centre of our metabolic processes, and if our vitamins and minerals are out of whack, that can lead to malabsorption issues.
 
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bulkbiker

BANNED
Messages
19,576
Type of diabetes
Type 2
Treatment type
Diet only
I ate less. I lost 35kg at 1200kcal per day on keto. And then I stalled at 1200kcal. And then i started to gain at 1200kcal.

Hi again,
How often are you eating?
Sounds like caloric restriction is working against you..?
The 1200 cal limit has slowed your metabolism?
Have you thought of trying a feast and fast regime?
How many "keto treats" are you having daily I wonder if fewer larger meals might be better?
You have lost 35 kg.. do you think that your body has decided that your weight was too low?

Sorry for all the questions but...
 
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ketointheuk

Active Member
Messages
40
Type of diabetes
Prediabetes
Treatment type
Diet only
Please have your thyroid checked, as well as vitamins and minerals.

A poorly functioning thyroid can play absolute havoc, being at the centre of our metabolic processes, and if our vitamins and minerals are out of what, that can lead to malabsorption issues.
I have your same fear, a proper full thyroid panel with antibodies is on my list as well.
i do fear though the general notion that low carb lowers thyroid function when it seems it lower tsh/t3 because in ketosis we become more sensitive to them?
Basically i'm concerned that they will blame everything on low carb when, without it, I would have full blow diabetes right now so, bothersome as the weight is, I am irritatingly much healthier than I was before chancing dietary approach :/
thanks for your advice, i'm glad to see there was a point in looking at the thyrodi then!
 

ketointheuk

Active Member
Messages
40
Type of diabetes
Prediabetes
Treatment type
Diet only
Hi again,
How often are you eating?
Sounds like caloric restriction is working against you..?
The 1200 cal limit has slowed your metabolism?
Have you thought of trying a feast and fast regime?
How many "keto treats" are you having daily I wonder if fewer larger meals might be better?
You have lost 35 kg.. do you think that your body has decided that your weight was too low?

Sorry for all the questions but...
caloric restriction has definitely **** me over.
I have been eating at TDEE since october 2018 as that was the advice for bulimia recovery.
I don't do keto treats, I do almost zero carbs (i don't do nuts, no veggies anymore either cause they would lead to weight gain despite being within macros).
I did OMAD before october 2018, but it was usually dinner and eating later in the day really did not work.
I have since moved to actually breaking fast with any protein I'd have and fat, and then just trying to have fat on its own the rest of the day to cover my macros and calories to make sure I wasn't in a deficit anymore.
But I'm not in an excess either.

I lost the 35kg in 18 months of keto at 1200kcal.
Then I stalled, the I started gaining at 1200kcal. I went down to 800/1000 some days, and that's when bulimia came back.
And with bulimia over 2 years I put the weight back.
The moment I hit recovery in january 2018 i maintained, but at that point I was back at the original weight (to the gram actually) and stayed there for almost two years until september 2019 hit.

If i were to believe in weight set point then that has gone up a good 6kg since september, and anything I have done before that has worked doesn't anymore. I am down to less than 5 foods (icnluding condiments), and the most shoking thing to me is that in october, a 36h fast which usually would be a guarantee to lose at least 1kg actually made me put ON weight. 800g in a 36h water fast. that freaked me out and even trying since water fasts usually means I am keeping the same weight, maybe losing 200g, or actually gaining.

Although, I am constantly in ketosis. my glucose stays constantly in the 4s, my ketones are never lower than 2.4mmol

Ironically the ONLY tested way were i lose weight is eating pure fat. By pure I mean literally cream and butter. That way I do lose weight, but of course it's not sustainable for the lack of amino acids alone.

Edited by mod to add the asterisks
 
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DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
I have your same fear, a proper full thyroid panel with antibodies is on my list as well.
i do fear though the general notion that low carb lowers thyroid function when it seems it lower tsh/t3 because in ketosis we become more sensitive to them?
Basically i'm concerned that they will blame everything on low carb when, without it, I would have full blow diabetes right now so, bothersome as the weight is, I am irritatingly much healthier than I was before chancing dietary approach :/
thanks for your advice, i'm glad to see there was a point in looking at the thyrodi then!

I'm not asking you to declare your weight, as that detail isn't any of my business, however, do you need to lose weight for your health?

I am atypically hypothyroid, a number of years, post-diagnosis and remission/reversal, or whatever you care to call it. It took a long time, with multiple blood tests to eventually arrive at a diagnosis at all. I don't carry any weight, and aside from crippling cold, poor skin, then latterly some hair shedding.

I have seen 2 Endos, including privately. The One I have stuck with is fine with LC, and during testing, he asked for a coeliac panel, and was content it didn't make sense to Carb up for that, bearing in mind I don't eat enough carbs in my day-to-day diet. I have since been instructed to go strictly GF, and do.

Go to your Endo with an open mind. I left this guy, with a ginagerous list of blood tests to be done, which he asked my GP to have done for me.

Please let us know how you get along.
 

ketointheuk

Active Member
Messages
40
Type of diabetes
Prediabetes
Treatment type
Diet only
I'm not asking you to declare your weight, as that detail isn't any of my business, however, do you need to lose weight for your health?

I am atypically hypothyroid, a number of years, post-diagnosis and remission/reversal, or whatever you care to call it. It took a long time, with multiple blood tests to eventually arrive at a diagnosis at all. I don't carry any weight, and aside from crippling cold, poor skin, then latterly some hair shedding.

I have seen 2 Endos, including privately. The One I have stuck with is fine with LC, and during testing, he asked for a coeliac panel, and was content it didn't make sense to Carb up for that, bearing in mind I don't eat enough carbs in my day-to-day diet. I have since been instructed to go strictly GF, and do.

Go to your Endo with an open mind. I left this guy, with a ginagerous list of blood tests to be done, which he asked my GP to have done for me.

Please let us know how you get along.

Heres the issue: any health problem that showed via blood tests before embarking keto is no longer there.
However my BMI is 35. I cannot genuinely fool myself into thinking since i'm "apparently" healthy otherwise this weight is acceptable. Apart from the 3 years doing keto before bulimia came back, I was this exact weight all my adult life. Well before the last 6kg crept on since september.

In your experience then it is acceptable going to a private endo with a list of test to request? I am scared of having to fight and defend Low carb but I will if I have to. My GP confirmed to me the other day that even going private it's relatively common to do test prescribed either via the GP or directly at the hospital... I just hope not to be looked up and down and invalidated because i do low carb and have for such a long time...

Thanks so much for sharing your experience, it is making me feel slightly better to not feel alone in this.
I will absolutely keep you all posted. This situation is too weird to not report back anything I should find cause if by any chance there's anyone is a similar position I need to put anything I find out there in the hope no one else has to go through this stress :(
 
M

Member496333

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@ketointheuk I'm afraid I do not have any links to hand that can point you to any reliable literature regarding the dietary fat thing.

But, importantly, @bulkbiker makes an excellent point regarding the slowing of metabolism due to caloric restriction. In my haste I had kind of skimmed over the calorie deficit part. @DCUKMod seems to be very knowledgable regarding all things thyroid.

EDIT: however, even the caloric deficit thing is curious, because in the absence of elevated insulin (as evidenced by the presence of ketones), your body should have been pulling the balance of energy from its own stores of fat.
 
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DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
Heres the issue: any health problem that showed via blood tests before embarking keto is no longer there.
However my BMI is 35. I cannot genuinely fool myself into thinking since i'm "apparently" healthy otherwise this weight is acceptable. Apart from the 3 years doing keto before bulimia came back, I was this exact weight all my adult life. Well before the last 6kg crept on since september.

In your experience then it is acceptable going to a private endo with a list of test to request? I am scared of having to fight and defend Low carb but I will if I have to. My GP confirmed to me the other day that even going private it's relatively common to do test prescribed either via the GP or directly at the hospital... I just hope not to be looked up and down and invalidated because i do low carb and have for such a long time...

Thanks so much for sharing your experience, it is making me feel slightly better to not feel alone in this.
I will absolutely keep you all posted. This situation is too weird to not report back anything I should find cause if by any chance there's anyone is a similar position I need to put anything I find out there in the hope no one else has to go through this stress :(

When I first went to the Endo, I didn't have a shopping list of tests - he had that! As my major symptom was crushing cold, and I had been referred to investigate thyroid issues, even though at that stage my bloods were "in range".

The Endo blanched a bit when he took my own and family medical history, because of its being strewn with autoimmune conditions. He was totally convinced I had to have one or two of them. I had (and hope I still have) none of them. He was astonished. He formulated the list of tests.

Who pays for testing will mainly depend on who pays for the consultation - you or your insurer. This was broached right up front, and unfortunately my insurer insists that my thyroid issues are elated to my T2 diagnosis and therefor will not stump up. This despite 6 years on non-diabetic blood tests.

On that basis, the Endo was sympathetic to my irritation with my PMI provider.

If you go with a big list of tests, and he is indulging you, he may, or may not ask your GP to do the blood work. If you are expected to foot the bill yourself, it could grow like Topsy.
 
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ketointheuk

Active Member
Messages
40
Type of diabetes
Prediabetes
Treatment type
Diet only
@ketointheuk I'm afraid I do not have any links to hand that can point you to any reliable literature regarding the dietary fat thing.

But, importantly, @bulkbiker makes an excellent point regarding the slowing of metabolism due to caloric restriction. In my haste I had kind of skimmed over the calorie deficit part. @DCUKMod seems to be very knowledgable regarding all things thyroid.

EDIT: however, even the caloric deficit thing is curious, because in the absence of elevated insulin (as evidenced by the presence of ketones), your body should have been pulling the balance of energy from its own stores of fat.

It's both validating and frustrating seeing you guys find this as unreasonable as I do.

One of the weirdest things and the reason why i asked for more info on fat storage and the reason why I've been looking closely into it for the last 6 months or so is that even with water fasting not working anymore, fat alone does. Note, not even fat fasting, I mean fat alone as in butter and clotted cream. if I could make the effort to survive on pure fat I have noticed repeatedly thats the only thing that consistently works, but of course the deficiency for vitamin minerals and amino acids that it brings it's not acceptable to do. And the moment I add say, eggs to that, to bring in the essential amino acids, we're back to step one.

I'd like to thnk that after a good year at tdee I should have brough my metabolic rate up again, but of course I cannot know without a test (which if the endo could consider i'd be estatic to do) it's just hard to not panic at this point, so thank you for at least indulging me in my rant and giving me good ideas as to what to present to the endo next week.
 
M

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@ketointheuk, not that I'm an expert by any means, but this has got me uncharacteristically stumped for possible answers. Watching with great interest for further updates.
 
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ketointheuk

Active Member
Messages
40
Type of diabetes
Prediabetes
Treatment type
Diet only
@ketointheuk, not that I'm an expert by any means, but this has got me uncharacteristically stumped for possible answers. Watching with great interest for further updates.
you can absolutely count on it. at this point i need to get to the bottom of this for me but for sharing too. i will keep you all posted, and again thaks for taking the time to give me some directions, it's truly incredibly appreciated
 
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MollieB

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my insurer insists that my thyroid issues are related to my T2 diagnosis and therefor will not stump up.
I would ask them for the clinical documentation to support their theory that type 2 diabetes CAUSES hypothyroidism. If anything, studies suggests that hypothyroidism increases the risk of type 2 diabetes. (Though the how is unknown).