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Interesting endocrinology appt

Brunneria

Guru
Retired Moderator
Messages
21,877
Location
Lincolnshire
Type of diabetes
Type 2
Treatment type
Diet only
Every year I trundle off to my annual appt.

The appoint is because I've been diagnosed 15+ yrs ago with a benign pituitary gland tumour which f**ks *p a number of my hormones. I also have PCOS (polycystic ovary syndrome) which may, or may not be related to the tumour, but certainly contributes to the hormone 'interference levels.'

This year, I went in better educated, more curious, and with a list of questions - so THANK YOU ALL, you marvellous people on this forum, because without you, and your collective knowledge, I wouldn't have made nearly so much use of the appt!

Results:

The last 12 months on reduced tumour medication did not have the desired effect of showing the tumour had shrunk. It hasn't. My prolactin levels are back above (waaaay above) normal, with accompanying symptoms.
My hormones are more screwed than they were 12 months ago, and so I'm now back up on the bigger dose.
(I'm pleased about this because life has not been as comfortable since they dropped the dose)

Blood pressure and weight are both down on last year.
I was congratulated, and he made it clear that with my tumour/PCOS combo, weight loss is VERY challenging.
(I can thank very low carb for this!)

Blood results show that I am not yet experiencing menopause
(Bummer that, because I'm counting the minutes! Post menopause has got to be an improvement on the current hormone chaos.)

Apparently, with the tumour and the PCOS, my diabetes was inevitable
(that's his word choice. He also said that 'we knew it was going to happen, and I'd have expected it earlier').

We discussed my lack of T2 diagnosis
(my doc won't diagnose without an oral glucose tolerance test, and I won't take one, because the last one made me feel like death and I lost 2 days work because my eyes went blurry and I couldn't drive).
He agreed that my meter results are at diabetic levels. But they are at levels where diet and exercise are the usual treatment options.
I am 6.5-8.5 fasting, and eating carbs will take me up to the mid teens. By low carbing, I keep BG between 5 and 7, rarely as high as 8.

I talked about strictly controlling carb portions, but didn't go as far as mentioning LCHF.
But I had my Trudi Deakin book 'Eat Fat' holstered in my bag, in case I needed it.

In his opinion, if I am self funding my BG testing and keeping track of my levels, then I can carry on as I am. He thinks the OGTT is useful to catch diabetes early, and allow treatment to slow diabetes down. If I am already monitoring it myself, and controlling by diet, then a diagnosis is far less important. He stressed that if I should see my levels increasing, I should go to doc and get a diagnosis, but left it to me to decide when.

And we talked about metformin. He said that if my levels rose, metformin would be a good drug choice, but would be a post-diagnosis option, not something he would go for now, despite the PCOS.

I would have been interested to see if metformin would have an effect on my dawn phenomenon and fasting levels, but can see his argument is valid, and if I am managing without it then why take an unnecessary drug?

All in all, a VERY productive appt.
And he treated me like a functioning adult throughout.
 
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Brunneria, very happy for you,thats because you went in forearmed so to speak, and had thought through your q's and answers very well,a lesson for us all happy :)
 
Hi @Brunneria not easy dealing with tumor problems, it is in fact prerty awful ...
I think you are dealing with it in a very positive way ...
...carrying something very big around which for some might have to be removed ...not nice , I won't go into details ....
A big topic , you have mentioned , and one that is not often spoken about as a contributing factor of DB ....
Really glad you were lisitened to...


Glad things have shrunk though ...
Hrt is a problem at times with this problem , as hrt can cause the tumors to grow ....increase fluid around them as I understand it ....

Take care and thank you for sharing ....kat
 
Thanks @Kat100

I'm really lucky with the tumour.
Apparently, it's only small, and would have to be at least twice the size before it pressed on anything vital, causing headaches or (worst case) blindness.

I've probably had it for about 30 yrs, because that is when the symptoms started.
But it wasn't diagnosed til 15 ish years ago, so that was a good clue that it isn't growing, cancerous or terminal

All of which is tremendously good news!
Especially since operating in the pituitary gland involves going in up the nose into the skull, and scooping bits out.
Believe me, I count my blessings every day!
 
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Hi @Brunneria ....that is such good news ....big smile comming your way....
Can't believe you have had it all these years .... Well I can .....
Glad you have someone good looking after all this ....
Good news for you today ....that is great .....
 

Sounds like an excellently, solid appointment.

It reinforces to me again, how important it is to go to these things prepared. We expect lots of attention and respect from these people, so we should show enough interest to prepare beforehand ourselves. And some of these people even quite like the challenges we throw their way.

I imagine he smiled when you left.
 
Excellent ! There is some good, positive feedback there from him and it shows all the work that you have done, all that research and putting it in to practice has paid off

So an actual diagnosis of Type 2 is held back by the standoff of the glucose tolerance test - I can understand your reluctance . Would you actually gain anything by having an " official " diagnosis ? Given that your case is not straightforward, would he consider prescribing test strips , for example ?

I love my visual of you " holstering " Trudiso Deakin's book, and at the first sign of trouble doing a gunslinger and growling " I have this lifestyle, and I'm not afraid to use it ! Eat Fat, Sucker !"



Signy
 


I think there would be benefits from a diagnosis - eye and foot check, regular hba1cs, are some of them.
It has also occurred to me that if I suddenly ended up in hospital with, say, a broken leg, I would be in deep trouble unless I had a willing gofer to fetch in low carb food parcels. Sudden sky high BG from hospital food wouldn't help healing. But then, most diabetics find themselves in that situ from hospital food, so I wouldn't be unique...

It was very nice him confirming some of my thinking!

Re the test strips...
At the moment, my testing is costing less than the prescription charge.
And without a diabetes diagnosis, I have to pay for all my prescriptions for the tumour (cabergoline, and occasionally Spironolactone) so I wouldn't gain anything by a strip script, except for a few expensive strips and another model monitor.

At the moment, I am just delighted that my diabetes status has appeared on his clinic notes (even if it isn't backed by test results), and relieved that he didn't insist on an OGTT.

It was such a fab result all round.
 
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A GP only needs a blood test to diagnose Diabetes, but it does sound like you are pre diabetic.
 
I am so pleased for you.

Having someone who knows what's happening to you is a God send.

Keep up the good work mate!


The OH is having a rough time with her menopause and her T2. So I can understand your feelings.
 
A GP only needs a blood test to diagnose Diabetes, but it does sound like you are pre diabetic.

Nope.

My fasting blood results vary from 6.5 to 8.5 (7 or over is considered diabetic)

My hba1c was 45 (last year when I was low carbing, since then I have gone very LC, so it will be lower now). If I ate a 'normal' diet my BG would be in the teens. A sandwich and a scone sends my BG over 14mmol/l (when I told the consultant that today he raised his eyebrows and said 'that IS high')

My last OGTT (3 yrs ago) was 11.1 mmol/l at 2 hrs 15 mins. I didn't get a diagnosis, even though the cut off is supposed to be 11mmol/l at 2 hrs.

I was prediabetic for over a decade. Those days are long gone
 
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Have you ever had a prolonged OGGT?

That reading seems still too high at that time.

I'm gonna have a look see what my reading was around that time to see if mine were similar.
 
Have you ever had a prolonged OGGT?

That reading seems still too high at that time.

I'm gonna have a look see what my reading was around that time to see if mine were similar.

No, I've only ever had 2 x 2 hr ones, several years apart. The first was clearly preD. The second made me feel so ill... I've been dodging them for the last 2 years.

But my insulin response has always been late, and excessive, so I am sure that a 5 hr test like yours would once have revealed RH, but not sure it would now...
 
Just had a look and my reading at 2.5 hours was 9.5mmols. I was well into going down towards normal levels. It just didn't stop!!
It does seem your response is late.

The horrible feelings (symptoms) were the sudden drop in your levels. When mine bounced around, those are the symptoms I experienced.

I have another test tomorrow, will report in full tomorrow night, currently 6 hours into my fasting!

I'm starving!
 
I'm delighted for you. Such a pleasure to hear about positive appointments. I always go well prepared and find that is the best (only) way to get what I want out of the appointment. It's just a shame you can't get a diagnosis for the "perks".
 
I'm delighted for you. Such a pleasure to hear about positive appointments. I always go well prepared and find that is the best (only) way to get what I want out of the appointment. It's just a shame you can't get a diagnosis for the "perks".

I'm sure it'll come one day.
All I need is 2 fasting BG above 7. And if I manage to get two early morning appts, then that is quite likely...
 
Dear Brunnerissima,

This sounds really very good - so good to have you know what you want and have him discuss it intelligently. I just wish you'd take Metformin. Its a really good drug. It's GOOD for us, which so few things are.

Don't wait if numbers go up more, will you. And don't starve. That's miserable.

You'd prefer a proper T 2 diagnosis, wouldn't you.

Sorry about all the 'good's. Feeling mellow.

x Lucy
 


You're a star, you know that, don't you?

Worry not, my dear. I don't do hunger.
I live a very satisfactory and indulgently decadent low carb existence.
And I agree about metformin.
HCPs have offered it to me about 5 times (so far), and up until now, I have always gracefully declined.
But I will accept the next time, just to see if it helps with the DP.
 
I mean, granted, if the tummy effects are just too grim, then people can't take it. But one can build up the dosage VERY slowly, and/or shout very loudly for the time-release one
 
Hey Brun - well done, that was a really positive appointment!
 
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