Not diabetic anymore??? Confused as heck :(

Gezzabelle

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Messages
1,280
Type of diabetes
Prediabetes
Treatment type
Diet only
Your high ferritin is probably haemochromatosis - another serious condition your HCPs have overlooked, I think. The test for this is not a liver scan, it's genetic testing of a blood sample. You may not even need the liver scan. If you have it, forget treating it with food changes, that won't do a thing. You would need to donate blood until the levels come down. Your level is not too high (it can be in the 1,000s) so you might only need to do it a handful of times, then once every 3 months or so. I don't know, but this is just to give you an idea of how haemo is treated. IMO with the increased red blood cells, something else could be going on so you should be referred to a haemotologist (blood specialist). You might still need the liver scan, but if I were you I would be more comfortable with a haemotologist deciding that.

I am a carrier for two types of haemo, so if I had kids with someone who was a carrier for one of those types, our kids would have full-blown haemo and need blood taken off periodically. I don't have kids. If you test positive for haemo, your whole family should also be tested. I was the first in my family to be diagnosed, and because of that, the life of one of my uncles was probably saved.

It's a very common condition. Approx 1 in 8 people of celtic descent are thought to be carriers. Doctors are supposed to be aware of it and to notice it when ferritin is high, but despite decades of awareness-raising education, some still don't.

Oh and the nurse who answered text messages during a consultation? I would love to see a formal complaint.

Well done on kicking diabetes into remission, you inspire me :)
Thank you :) From my surgery I should be grateful that they have even noticed I may have a problem needing a scan as they seem to ignore everything else. I had this raised ferritin a good few years ago...it showed up in one blood test and they told me to stop taking the vitamin supplement I was taking at the time. It has never shown up since until the last 3 months. The reason for the scan I believe is the fact it went up by over 50 in the 3 months in between blood tests. Just hoping it turns out to be nothing Thanks so much for the information....helps a lot :)
 
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Larissima

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Messages
875
Type of diabetes
Type 2
Treatment type
Diet only
Congratulations, Gezzabelle, well done you!!!

I'm not even going to comment on the stupidity you were exposed to. Regarding your high ferritin, although I have this knowledge from the other side (too low in my case, I sometimes have to take supplementary iron), I agree with CatLadyNZ - blood donations are the way to go! Imagine, you're helping other people and helping yourself at the same time! :D Obviously, do go through all the recommended tests first.
 
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Paul59

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Messages
954
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Stupid Nhs, they go on about the increase in obesity & diabetis aswell as other things related to eating killer carbs & fail to see why all these things are happening & how to turn things around, even when people like yourself & many others do turn things around. I'm sure they enjoy seeing people get ill so they & the drug manufactures make money. So why do they go on about the increase in illneses when at the end of the day it's their advice that causes it all mainly.
 
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Gezzabelle

Well-Known Member
Messages
1,280
Type of diabetes
Prediabetes
Treatment type
Diet only
Congratulations, Gezzabelle, well done you!!!

I'm not even going to comment on the stupidity you were exposed to. Regarding your high ferritin, although I have this knowledge from the other side (too low in my case, I sometimes have to take supplementary iron), I agree with CatLadyNZ - blood donations are the way to go! Imagine, you're helping other people and helping yourself at the same time! :D Obviously, do go through all the recommended tests first.
Wonder if my blood would be acceptable with the diabetes problem and also the high ferritin levels? I would gladly donate blood, especially if it also eased a problem for me as well as being great for any poor soul that needed it. I just had to tell my dentist the tale when he asked about any health changes. He was stunned at the advice I was given to go home and eat broccoli and drink wine as well as the total lack of care and understanding of the blood results. I will just carry on as I am and stay safe rather than risk complications further down the line because of the neglect from my doctors.
 
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NoCrbs4Me

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3,700
Type of diabetes
I reversed my Type 2
Treatment type
Other
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Vegetables
A better word would be remission.

http://www.diabetesdaily.com/blog/2015/08/words-matter-why-you-cant-reverse-diabetes/

"I feel constantly bombarded with claims that type 2 diabetes can be reversed and prevented. I even hear absurdities about how type 2 diabetes can be cured. I expect these things from the scams that we all see in our email inboxes and across the web. But what really sets my hair on fire is the use of these words by people who should know better. Medical professionals and our government should know better........."
I cured mine. I don't think there was anything physically wrong with me that caused my diabetes, just something terribly wrong with the food I ate. I didn't eat particularly unhealthily, just too much processed food made from whole grains (believing that was healthy for me). What sets my hair on fire is when people say that if you go back to eating what caused your type 2 diabetes you would get it again so you're not cured. That's a very silly argument.
 
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Gezzabelle

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Messages
1,280
Type of diabetes
Prediabetes
Treatment type
Diet only
I cured mine. I don't think there was anything physically wrong with me that caused my diabetes, just something terribly wrong with the food I ate. I didn't eat particularly unhealthily, just too much processed food made from whole grains (believing that was healthy for me). What sets my hair on fire is when people say that if you go back to eating what caused your type 2 diabetes you would get it again so you're not cured. That's a very silly argument.
Yes...a silly and frustrating argument...especially when I do everything right to put my bg figures back to those of a non diabetic only to be told to go back to eating as many carbs as I want, including bread, potatoes, cake and whatever else I fancy. Sadly I fear the health authorities will never quite get it right and while their ignorance persists the number of people being diagnosed and then needing drugs to control it will go on growing.
 
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ButtterflyLady

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Messages
3,291
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Acceptance of health treatment claims that are not adequately supported by evidence. I dislike it when people sell ineffective and even harmful alternative health products to exploit the desperation of people with chronic illness.
Wonder if my blood would be acceptable with the diabetes problem and also the high ferritin levels? I would gladly donate blood, especially if it also eased a problem for me as well as being great for any poor soul that needed it. I just had to tell my dentist the tale when he asked about any health changes. He was stunned at the advice I was given to go home and eat broccoli and drink wine as well as the total lack of care and understanding of the blood results. I will just carry on as I am and stay safe rather than risk complications further down the line because of the neglect from my doctors.
As far as I know, haemochromatosis and diabetes do not exclude people from donating blood. Haemo used to, but I think that has changed. There are lots of other reasons why blood may not be accepted though. Haemo patients can still get it drawn off, because that benefits them. It's just a shame when all that iron-rich blood can't be used for someone else.
 
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mehhh2015

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Messages
441
Type of diabetes
Type 2
Treatment type
Diet only
I cured mine. I don't think there was anything physically wrong with me that caused my diabetes, just something terribly wrong with the food I ate. I didn't eat particularly unhealthily, just too much processed food made from whole grains (believing that was healthy for me). What sets my hair on fire is when people say that if you go back to eating what caused your type 2 diabetes you would get it again so you're not cured. That's a very silly argument.

Mmmmm....

Yes, certainly to be told to go back to certain eating habits is crazy to say the least after all the improvements with the new habits are showing... I personally would stick to what gives me the greatest level of health.

Sure I can keep normal BG's while eating carbs, but I am certain I am not cured of the factors that make me not to tolerate carbs as well as others do, and I have serious doubt that will ever ever change.

That's the aspect that matters here because it influences food choices. Remission of diabetic symptoms is certainly, for me, a better term to describe what is achieved, remission makes me aware that there is something, in this case food choices that might be better for me than others.

The perfect example is that the nurse, understanding that diabetes is high BG's and therefore by showing normal numbers it is reversed or cured, sends the patient to eat cakes and pizzas, because everything is fine now... isn't it? Using your logic that is exactly what she is doing.

In my case, the only thing I am cured of is of my high BGs for the moment. From that point of view I am not diabetic (if diabetes is only high BGs but it isn't as far as I am concerned)

I know for a fact that I am insulin resistant (overweigh or normal weight, high carb or low carb dieting) and I have been for as long as I can remember, and hyperinsulinemic, and to what extent there is damage to my pancreas I don't know. I'm trying to protect it though. As well as my kidneys, my eyes, my feet...

There is a lot of debate around what comes first, hyperinsulinemia or insulin resistance, and the relationships between the two... there are not clear cut answers.

I am really happy there is nothing physically wrong with you that caused your diabetes... I wish I could say the same about me... but I can't.

Neither can people with type 1 diabetes... I think it would be good to remember that there are many varieties of conditions called diabetes, and even type 2 diabetes, different genetic variations and types on insulin resistance, different cultural backgrounds and eating styles... plus all the things that science is yet to discover about all this stuff.

Certainly there are wrong food choices FOR ME that definitely didn't help (plus other factors)... but I wouldn't call them the cause of my diabetes (not even the cause of my high BGs), my insulin resistance, my hyperinsulinemia, and a few other matters that had been with me at different stages in my life.

Certainly, my body copes the best with very little carbs, no shadow of a doubt. And know I can never go back to a free style mindless way of eating without consequences, when I do, I pay it high.

But there are far too many people around me that can eat happily cakes, pizzas and rice, and are slim and happy and healthy that I find it difficult to blame the food per se. If that was the case, all of them would be diabetics by now, and they aren't.

That doesn't mean that what they eat is good or healthy for them (or not), but I certainly don't believe that food is the cause of diabetes. In my case, my inability to cope with certain foods is. Not everyone is like me.
 
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dbr10

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Messages
2,237
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Just had my new HbA1c result and it's down from 6.5 or 48.5 to 5.7. I am totally confused and according to the nurse I am not diabetic ...BUT....WILL be if I eat carbs again and am retested in 12 months !!!! Confused as hell :(

Was shocked to find myself in a similar situation after my second A1c test. Numbers fell from 6.9 to 5.9 but ONLY because I was on metformin 500mg x 2, was walking more and using a meter to cut out foods which caused spikes. I actually think that I had deteriorated (inspite of lower numbers) because I had to cut out more and more carbs over the 3 months.
So my doctor came up with, now the number was lower, I could stop taking the metformin. Absolutely insane. Had to argue with him. I said provided they were relatively safe I wanted to keep taking them. So he came back with there might be an increased heart attack risk. I am sure he is confusing the ACCORD study 2008 which NICE uses to justify giving only the cheapest medications to patients. They say that reducing A1c below 6.5 is dangerous. This is complete claptrap. All non-diabetics will have A1c's below this. Following doctors' criticism in the Lancet of this policy I am convinced I will not get proper treatment and that NICE will be there to knock the last nail in the coffin.
 
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Gezzabelle

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Messages
1,280
Type of diabetes
Prediabetes
Treatment type
Diet only
Was shocked to find myself in a similar situation after my second A1c test. Numbers fell from 6.9 to 5.9 but ONLY because I was on metformin 500mg x 2, was walking more and using a meter to cut out foods which caused spikes. I actually think that I had deteriorated (inspite of lower numbers) because I had to cut out more and more carbs over the 3 months.
So my doctor came up with, now the number was lower, I could stop taking the metformin. Absolutely insane. Had to argue with him. I said provided they were relatively safe I wanted to keep taking them. So he came back with there might be an increased heart attack risk. I am sure he is confusing the ACCORD study 2008 which NICE uses to justify giving only the cheapest medications to patients. They say that reducing A1c below 6.5 is dangerous. This is complete claptrap. All non-diabetics will have A1c's below this. Following doctors' criticism in the Lancet of this policy I am convinced I will not get proper treatment and that NICE will be there to knock the last nail in the coffin.
Sorry to hear you have had a similar experience. I have now come to the conclusion that there is only ME that will take care of my diabetes. It is scary to think we put our trust in these people. I am now in a position where I won't go to the doctors anymore despite needing to. I would rather suffer in silence than listen to their claptrap and bs.
 
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ButtterflyLady

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Messages
3,291
Type of diabetes
Type 2
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Tablets (oral)
Dislikes
Acceptance of health treatment claims that are not adequately supported by evidence. I dislike it when people sell ineffective and even harmful alternative health products to exploit the desperation of people with chronic illness.
Sorry to hear you have had a similar experience. I have now come to the conclusion that there is only ME that will take care of my diabetes. It is scary to think we put our trust in these people. I am now in a position where I won't go to the doctors anymore despite needing to. I would rather suffer in silence than listen to their claptrap and bs.
I'm sorry to hear this. I agree we need to withhold our trust in doctors until they have shown they can be trusted, but there are still going to be times when we need them. They may get this aspect of one illness wrong, but the rest of their work might be ok?
 
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Gezzabelle

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Messages
1,280
Type of diabetes
Prediabetes
Treatment type
Diet only
I'm sorry to hear this. I agree we need to withhold our trust in doctors until they have shown they can be trusted, but there are still going to be times when we need them. They may get this aspect of one illness wrong, but the rest of their work might be ok?
In my own personal experience sadly no. My gp constantly makes light of any illness. All of the nurses have left the practice leaving just one very overweight lady who eats chocolate the whole time you are in with her. I have lost faith in the whole set up and may have to find a new doctor because as you say there will be a time when I have to go.
 
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Ricky

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Messages
295
Type of diabetes
Prediabetes
Treatment type
Diet only
Just to say I have been low carb/low Gi + exercise for 10 years and I test regularly . I don't go near the doctor cos I know I am doing OK on my own. I know that if I ate carbs like a non diabetic my bg would go up into diabetic levels. My bs goes up if I am ill with a cold or something and won't come down until it goes away. I have a HbA1c once a year and accepot that I will have to go on meds when it goes too high but at the moment I am doing OK.
I think you have done brilliantly and obviously caught it at an early stage.
 
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Lamont D

Oracle
Messages
15,796
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
Whilst rereading my blogs and posts. I too have little faith in my surgery and the doctors. That in my experience haven't got a clue in the treatment of T2 or in my condition.
The wife is going through a bit of a bad time because our named doctor won't stop doling out the mess. He keeps trying new and other meds but he won't pass the case to a specialist. It is so frustrating.
I won't be going back to him as long as I have my consultant.
 
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ButtterflyLady

Well-Known Member
Messages
3,291
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Acceptance of health treatment claims that are not adequately supported by evidence. I dislike it when people sell ineffective and even harmful alternative health products to exploit the desperation of people with chronic illness.
Just to say I have been low carb/low Gi + exercise for 10 years and I test regularly . I don't go near the doctor cos I know I am doing OK on my own. I know that if I ate carbs like a non diabetic my bg would go up into diabetic levels. My bs goes up if I am ill with a cold or something and won't come down until it goes away. I have a HbA1c once a year and accepot that I will have to go on meds when it goes too high but at the moment I am doing OK.
I think you have done brilliantly and obviously caught it at an early stage.
When it goes too high? Maybe it won't go so high that you will need meds? I used to think diabetes was progressive, but the more I read about people's stories here, the more I think maybe it isn't? So I now say things like "if" I need more meds, or insulin, one day.
 
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Ricky

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Messages
295
Type of diabetes
Prediabetes
Treatment type
Diet only
When it goes too high? Maybe it won't go so high that you will need meds? I used to think diabetes was progressive, but the more I read about people's stories here, the more I think maybe it isn't? So I now say things like "if" I need more meds, or insulin, one day.
What optimism - I wish I shared it. The whole of my dad's family were Type 2 but in those days they didn't know about low carbs. What makes me think I am progressing the wrong way is that my fasting bs are now usually over 6 although when I take them before lunch they are often in the low 5's. I also know that if they are high a 20 mins very fast walk will bring them down!!
 
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dbr10

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2,237
Type of diabetes
Type 2
Treatment type
Tablets (oral)
I would rather suffer in silence than listen to their claptrap and bs.

I have come to see that all too clearly. I am going to see another doctor later to see if I can get any sense out of him. Only alternative would be private prescription I suppose.
 
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dbr10

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2,237
Type of diabetes
Type 2
Treatment type
Tablets (oral)
I have come to see that all too clearly. I am going to see another doctor later to see if I can get any sense out of him. Only alternative would be private prescription I suppose.
Shouldn't be replying to myself, I know. Outcome totally predictable. Just came out with the same old rubbish. If I tried to reduce A1c further I might have a hypo. Not just on Metformin of course. I am also concerned that sulfonylureas are the second line treatment. Actually got quite stroppy when I questioned him. He could quote things back to me; except, of course, that he couldn't - not off the top of his head anyway. So that is my faith in my doctors to manage my condition correctly totally destroyed.
 
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Lamont D

Oracle
Messages
15,796
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
Shouldn't be replying to myself, I know. Outcome totally predictable. Just came out with the same old rubbish. If I tried to reduce A1c further I might have a hypo. Not just on Metformin of course. I am also concerned that sulfonylureas are the second line treatment. Actually got quite stroppy when I questioned him. He could quote things back to me; except, of course, that he couldn't - not off the top of his head anyway. So that is my faith in my doctors to manage my condition correctly totally destroyed.
How can you hypo, when your not on meds?
If you reduce your hba1c then you should be at normal levels!
Yes sulfonylureas are the next line in treatment because diabetics can be out of control and insulin resistance is too much to keep control.
GPs are not trained to specialize. But they assume to!
The system breaks down because we have been brought up to put our trust in them. The day of family doctor or the village doctor has well and truly gone.
Every person should be assessed by the specialist of their choice, that doesn't happen because you would have to go private!
Only, as in mine and the wife and my kids, certain cases get referred, due to the GPs discretion. And of course money!
 
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ButtterflyLady

Well-Known Member
Messages
3,291
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Acceptance of health treatment claims that are not adequately supported by evidence. I dislike it when people sell ineffective and even harmful alternative health products to exploit the desperation of people with chronic illness.
Shouldn't be replying to myself, I know. Outcome totally predictable. Just came out with the same old rubbish. If I tried to reduce A1c further I might have a hypo. Not just on Metformin of course. I am also concerned that sulfonylureas are the second line treatment. Actually got quite stroppy when I questioned him. He could quote things back to me; except, of course, that he couldn't - not off the top of his head anyway. So that is my faith in my doctors to manage my condition correctly totally destroyed.

If I were in your shoes my faith in those doctors would be totally destroyed too. Just as well there are other doctors in the world.
 
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