Type 2 Ever heard of mis-diagnosis??

First.Officer

Well-Known Member
Messages
55
Type of diabetes
Type 2
Treatment type
Diet only
Okay, not entirely sure how to word this.....but.....

Back in January i was diagnosed as T2 diabetic, HbA1c was 58 mol/mmol. Subsequent 3 months spent using diet and exercise pushed the next A1c down to 26 mol/mmol.

Now - over the last couple of months a bit of a “living nightmare” has ensued for me personally. I decided as part of my new healthy regime, that i would monitor my BP that was a little raised, felt like it was the right thing to do. Sadly for me, and being a bit of a hypochondriac, the lovely expensive BP monitor i bought suddenly after a couple of weeks, detected an irregular heartbeat! (Long story short is that after repeated visits to A&E with perceived chest pains all the time, and various people telling me i ad an arrhythmia - turns out that a chat with two consultants and one of which was a cardiologist, lots of ECG’s, Echo and bloods - no arrhythmia, merely a perfectly healthy heart apparently ;-). ).

Subsequent to the above, and a whole raft of errors along the way - definitely have health anxiety as a result. This may be the cause of what i am trying to understand - the last 4-6 weeks have seen me suffer with dizziness, light-head and tinnitus of the left ear. I also get what i can only describe as “air bubbles” that occur usually after eating, in the legs and chest and arms (it varies). I also get a lot of stomach tremors/gas. Has anyone else ever experienced this?? Any ideas?.

Also, I should also add that since January this year, i have continued with LCHF, next HbA1c is due in July. I decided to stop constantly finger-pricking etc., as it was becoming almost OCD and obsessive, and was not helping me. The last week or so i have decided to do a few test pre and post meals, and i seem to be always around the 4.5 mol/mmol area. Has anyone ever heard of being mis-diagnosed as a T2? Is it even possible (one doctor suggested he thought i might not actually have ever been a T2, and friends etc also think this to be true - I have nooo idea!).

Grateful for any thoughts, suggestions and/or ideas.....
 
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Bluetit1802

Legend
Messages
25,216
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
When you were diagnosed in January, did you have any other blood glucose tests, such as a second HbA1c to confirm the first, or a fasting blood glucose test (taken from your arm)? Or was the diagnosis made exclusively on the 58 HbA1c?

Can I also ask if you are anaemic in any way, or if you have thyroid issues, or any red blood cell irregularities? These conditions can cause the HbA1c to be inaccurate.
 

Freema

Expert
Messages
7,346
Type of diabetes
Type 2
Treatment type
Diet only
I think it is good that you do understand that anxiety and obsessive health worrying in all directions can lead to numerous ideas of adding diseases ... maybe it is time to relax a bit, when just being diagnosed with type 2 it is of cause important to take the total control, but most newly diagnosed are at least a decade from any severe adding diseases if we just most days take our condition serious... maybe you would benefit from having a whole day off every month from your strict regimen
 

Freema

Expert
Messages
7,346
Type of diabetes
Type 2
Treatment type
Diet only
is your vitamin b 12 level okay... it might be a good idea to have this and other blood tests taken to make you sure you are healthy,

but when changing ones food style totally as most of us do when having this diagnosis we might also have more gas initially or less and other stomach reactions
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
@First.Officer - Within the raft of tests you have had along the way, have you had your thyroid checked out? If so, what was the outcome of that?
 

First.Officer

Well-Known Member
Messages
55
Type of diabetes
Type 2
Treatment type
Diet only
Hi all,

Sorry - i did have a previous HbA1c of 51 in August last year - this was also at the same time as i was in the process of “killing” a nasty parasite i picked up in West Africa some 3-years prior, a parasite that it turns out is a prolific sugar consumer. I was only told in August last year that “ my blood sugars were slightly high...”. As i now know, they were actually T2 levels. Ive not had any other tests than the HbA1c. One doctor i saw suggested that at 26 mol/mmol, this was suggestively low and he also did mention a glucose test perhaps would have been a good idea.

Recently I’ve tried messing around with carbs, trying sugary stuff - seemingly has very little effect on me 1 hour, 2 hours post meal. Makes me wonder if my symptoms might be due to lacking carbs in my diet as i’m living life as a diabetic in respect of meals etc.

Had Thyroid TSH and T4 levels checked, bloods etc. - nothing found although i think that the thyroid check was less than ideal in as much as they should check reverse T3 levels etc?? Oh, and there is a family member who is NIL thryroid function since birth.
 

Wendy18480

Active Member
Messages
29
Okay, not entirely sure how to word this.....but.....

Back in January i was diagnosed as T2 diabetic, HbA1c was 58 mol/mmol. Subsequent 3 months spent using diet and exercise pushed the next A1c down to 26 mol/mmol.

Now - over the last couple of months a bit of a “living nightmare” has ensued for me personally. I decided as part of my new healthy regime, that i would monitor my BP that was a little raised, felt like it was the right thing to do. Sadly for me, and being a bit of a hypochondriac, the lovely expensive BP monitor i bought suddenly after a couple of weeks, detected an irregular heartbeat! (Long story short is that after repeated visits to A&E with perceived chest pains all the time, and various people telling me i ad an arrhythmia - turns out that a chat with two consultants and one of which was a cardiologist, lots of ECG’s, Echo and bloods - no arrhythmia, merely a perfectly healthy heart apparently ;-). ).

Subsequent to the above, and a whole raft of errors along the way - definitely have health anxiety as a result. This may be the cause of what i am trying to understand - the last 4-6 weeks have seen me suffer with dizziness, light-head and tinnitus of the left ear. I also get what i can only describe as “air bubbles” that occur usually after eating, in the legs and chest and arms (it varies). I also get a lot of stomach tremors/gas. Has anyone else ever experienced this?? Any ideas?.

Also, I should also add that since January this year, i have continued with LCHF, next HbA1c is due in July. I decided to stop constantly finger-pricking etc., as it was becoming almost OCD and obsessive, and was not helping me. The last week or so i have decided to do a few test pre and post meals, and i seem to be always around the 4.5 mol/mmol area. Has anyone ever heard of being mis-diagnosed as a T2? Is it even possible (one doctor suggested he thought i might not actually have ever been a T2, and friends etc also think this to be true - I have nooo idea!).

Grateful for any thoughts, suggestions and/or ideas.....

My original numbers were 5.6 and my doctor prescribed me 2000mg a day of Glucophage straight away. Now I'm of the school of though, rightly or wrongly, with medication that starting low and building up is better than going straight for the full dosage.

Anyway it would appear that I can't take more that 500mg per day, I get quite ill when taking more.

My diabetic dietician (great woman, open to new ideas and anything that works) was very surprised that my GP put me on medication at all, she thought that he would recommend diet to try to control the levels.

So in answer to your question personally I think it is possible to be categorised T2 & pumped full of medication when borderline.

There are some very wise and wonderful people on this site who will give you a far better answer than I ever could.

Good luck xx
 

First.Officer

Well-Known Member
Messages
55
Type of diabetes
Type 2
Treatment type
Diet only
Hi all, many thanks for replies thus far.....

Further to earlier, i had a visit to doctors yesterday (booked a month in advance!!) to go over my issues with dizziness, tinnitus and head pressure. Sadly due to the way i feel and what i perceive as a lack of action over the past few months, i was somewhat confrontational with the GP in question (which is actually very unlike me) as thus far i have had to spend a fair amount of money to get various issues 'struck off' the list of possible causes, as the NHS revolves at a very, very slow rate and that's if there is deemed to be enough symptomatic evidence to justify tests, which i can understand to a degree. This issue for me now is making daily life awful, and has done for a few months now. Definitely anxiety is involved to a degree but that is not the reason for the issues i am having i am quite certain.

Now, i am wondering if anyone out there knows of a friendly and knowledgeable endocrinologist that i might be able to contact to discuss symptoms and try and find the solution - because its not happening at my GP surgery for sure (ENT referral being enacted but this will take a long time i am sure) and despite trying to rattle off all symptoms and issues, i was told that i only have 10 minutes and seems there is a number limitation to the issues you can discuss in one sitting. I have noticed a marked improvement in symptoms if i consume lots of carby food, namely wraps and crisps, kit kat (being playing for a week or so now). If i don't play with the carbs, i tend to sit anywhere from 3.4 mol/mmol to 4.6 mol/mmol prior to eating in the last few days, and after 1 / 2 / 3 hours, my levels may get up to 6.5, but invariably are back down to 5.6-ish within the 2-3 hour timeframe.

I have noticed that sometimes i have a 'hoarseness' to my voice every day or two for 20 mins or so, comes and goes (didn't get to communicate that to GP in time frame allowed), and a 'full' feeling in lower throat, but this may be just down to the fact that i have read in the past about thyroid issues (history in family). No thinning of hair or eyebrows, just the former symptoms along with what feels like confusion/fog and the fact that my personality seems to be different at times. This tends to peak at times, and wain at others.

Any comments and/or thoughts gratefully received, as i have no ideas left.....
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
Hi all, many thanks for replies thus far.....

Further to earlier, i had a visit to doctors yesterday (booked a month in advance!!) to go over my issues with dizziness, tinnitus and head pressure. Sadly due to the way i feel and what i perceive as a lack of action over the past few months, i was somewhat confrontational with the GP in question (which is actually very unlike me) as thus far i have had to spend a fair amount of money to get various issues 'struck off' the list of possible causes, as the NHS revolves at a very, very slow rate and that's if there is deemed to be enough symptomatic evidence to justify tests, which i can understand to a degree. This issue for me now is making daily life awful, and has done for a few months now. Definitely anxiety is involved to a degree but that is not the reason for the issues i am having i am quite certain.

Now, i am wondering if anyone out there knows of a friendly and knowledgeable endocrinologist that i might be able to contact to discuss symptoms and try and find the solution - because its not happening at my GP surgery for sure (ENT referral being enacted but this will take a long time i am sure) and despite trying to rattle off all symptoms and issues, i was told that i only have 10 minutes and seems there is a number limitation to the issues you can discuss in one sitting. I have noticed a marked improvement in symptoms if i consume lots of carby food, namely wraps and crisps, kit kat (being playing for a week or so now). If i don't play with the carbs, i tend to sit anywhere from 3.4 mol/mmol to 4.6 mol/mmol prior to eating in the last few days, and after 1 / 2 / 3 hours, my levels may get up to 6.5, but invariably are back down to 5.6-ish within the 2-3 hour timeframe.

I have noticed that sometimes i have a 'hoarseness' to my voice every day or two for 20 mins or so, comes and goes (didn't get to communicate that to GP in time frame allowed), and a 'full' feeling in lower throat, but this may be just down to the fact that i have read in the past about thyroid issues (history in family). No thinning of hair or eyebrows, just the former symptoms along with what feels like confusion/fog and the fact that my personality seems to be different at times. This tends to peak at times, and wain at others.

Any comments and/or thoughts gratefully received, as i have no ideas left.....

If you are keen to see an Endocrinologist, you could aals your GP for a referral. If he is unable, or unwilling, for whatever reason to help, you could see a private GP, who would probably oblige, if they marry your description to a likely endocrine source.

If you elect to see a private GP, just Google it. There are, perhaps surprising, several around. If you can't find any, just call your local private hospital. Most of those have associations with GPs who are either partly or wholly working privately, and some even have private GP clinics taking place on their premises.

I hope that helps
 

First.Officer

Well-Known Member
Messages
55
Type of diabetes
Type 2
Treatment type
Diet only
Thanks for that DCUK, have indeed in the past visited a private GP - may consider again.

Just spoke with A diabetes helpline to query - messing with carbs this afternoon - 100g in one quick meal pushed my number to 9.1 mol/mmol testing approx 75 mins later. Went for some 25-30 min cycle ride (very easy going ride out) and tested again, reading now down at 3.8 mol/mmol, and have seen similar results over past couple of days - advice i got was that this is normal - anyone dis-agree?

EDIT: now 30 minutes later am up at 6.7 mol/mmol.....
 
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