12 month review results

[Gezzabelle]

The dreaded 12 month review figures are in...or at least as many as they seem to have bothered giving me. It's been a year since I was diagnosed as borderline diabetic and I have taken the advice and help from this group to manage it.

HbA1c = 40.2......not sure what that is as I work in the ''old numbers'' ???? Previous HbA1c was 6.5 so not sure how this new figure equates to that?
FBG...no result as it wasn't tested but my own tests show it to be around 5.2
Ferritin (Iron) VERY high...has risen from 171 in February to 299....no one knows why
Iron Folate...13.6
Cholesterol....gone up from 5.9 to 6.4
HDL 2.11
LDL...they don't do anymore?? but said Non HD was 4.3 whatever that is??
Trygs....they don't test anymore????
Blood pressure off the scale....has been as high as 177/86....given meds for it that made my legs blow up like the elephant man and turn bright red!!! Taken off them and now have to test at home for a week 4 times a day and hand results in to be discussed in a month
Potassium up...no reading given to me but am told is very high and dangerous....and yet no advice given as to how to deal with it and no retest scheduled??? Nurse told me it could easily cause a heart attack and left it at that!
Kidney function has improved....oddly enough no one had told me it wasn't good when last tested !
B12 levels normal
BMI 19.3 and told I am too skinny and underweight!

So there you have it....along with a shocking revelation that I have a lump in my right lung that no one thought to mention either! They ''assume'' it is benign as apparently it showed up on an xray from 7 years ago. Would have been nice to be informed I had it though. They also say I have early signs of COPD!!!...which they say could be from the horrendous flu I had for 5 weeks when the xray was taken but they haven't said they will check any further to see if I do in fact have it...no flow meter tests or anything

All in all not sure if any of these results are good or bad. Have a huge feeling of 'they don't give a ****' somehow. Hopefully someone can help with a rough translation so I can know if to celebrate or cry

 

[Lamont D]

Nice to hear from you again, where have you been?
As to interpreting all that information about 'ladies' things, sorry!
I'm certain, some of the usual gang will be along with better advice!

Chin up!

 

[Gezzabelle]

Nice to hear from you again, where have you been?
As to interpreting all that information about 'ladies' things, sorry!
I'm certain, some of the usual gang will be along with better advice!

Chin up!

I've been here but not as much. I got kind of down hearted with all the 'thinking' about food al the time....but have been following a low carb way and doing okay or hopefully okay as these results are confusing as the diabetic side of it seems okay ( I think) but there seems to be so many other things going on and changing that aren't so good. Not sure which part you think of as ''ladies bits'' lol ...non of it specifically that...it's just my review results that I am not too sure are good or bad. I think the HbA1c is good?...the weight/bmi is okay....I think I was 58kgs in weight so all good there as I was 11st 2 when I set out a year ago! so huge weight loss...even if they now say I am underweight and my BMI is too low ....no pleasing them and not one word of well done from them either....probably cos I refuse to take statins and eat the ''bad way'' of low carb higher fat

 

[Lamont D]

Well done on the weight loss!

 

[hankjam]

The D numbers look pretty good. The lipids, who knows with the changing scene at the moment. Mine are higher and there is no way I am going back onto statins. Surprised they don't to Trigs anymore.
Kidney function is always a good one to have clear of problems.
BMI can be deceptive, though in general you don't want to go any lower.
BP is high, worth looking into that one and seeing what can be done. I have an "irregular" heart beat caused by an enlarged heart(!) and am on a BP drug, perindolperil, and it seems to be okay with me, BP seems to have settled into "acceptable" range, fingers crossed.
Medics can give up on folk, thinking about both my in-laws at the moment.... Wish you good.

 

[Hiitsme]

Hi @Gezzabelle good to hear from you.
Good HbA1c your 40.2 equates to 5.8 using
http://www.diabetes.co.uk/hba1c-units-converter.html

Can't help with your other results.
I got told my BMI was too low at 19.6 and I needed to put weight on. Down from 25 at diagnosis. We can't win, lose the weight to get control and then told we've lost too much. I'm fortunate as I've put a bit of weight on and still kept control.
Have you still not had any help of your ferritin levels as you have mentioned this before. I think you need to make a list of your questions you want answered, probably in writing and hand the list to whoever you see for your next appointment.
Take care and I do hope you get some sensible answers soon.

 

[Gezzabelle]

Hi @Gezzabelle good to hear from you.
Good HbA1c your 40.2 equates to 5.8 using
http://www.diabetes.co.uk/hba1c-units-converter.html

Can't help with your other results.
I got told my BMI was too low at 19.6 and I needed to put weight on. Down from 25 at diagnosis. We can't win, lose the weight to get control and then told we've lost too much. I'm fortunate as I've put a bit of weight on and still kept control.
Have you still not had any help of your ferritin levels as you have mentioned this before. I think you need to make a list of your questions you want answered, probably in writing and hand the list to whoever you see for your next appointment.
Take care and I do hope you get some sensible answers soon.

Still no joy with the ferritin....it has rocketed again but they never do anything but retest in 2 or 3 months....this nurse even said it doesn't matter....so why have I had repeated tests for the last year? I despair of trying to get anywhere with them....they honestly don't seem to have clue

 

[sud5nala]

Haemochromatosis. Blood pressure sky high? That ferritin? Look up haemochromatosis.

"Ferritin levels greater than 300 ng/mL in men and 200 ng/mL in women support a diagnosis of hemochromatosis. However, ferritin levels can also be increased by many common disorders other than hemochromatosis."

I wouldn't think the total lipoprotein of 6.4 is alarming, and with the HDL being 2.1, that makes the 6.4 even less of a concern.

 

[chalup]

I have a friend with haemochromatosis. It causes quite a bit of joint pain when his iron levels go too high. The treatment for this is to have a pint of blood drawn every few months and to avoid eating too much red meat or organ meat ie liver. It is genetic and I am pretty sure there is a test for it.

 

[Gezzabelle]

I have a friend with haemochromatosis. It causes quite a bit of joint pain when his iron levels go too high. The treatment for this is to have a pint of blood drawn every few months and to avoid eating too much red meat or organ meat ie liver. It is genetic and I am pretty sure there is a test for it.

Thank you for your input. I do know of that condition but my gp refuses to even consider it and I get accused of spending ''too much time on Google''!! It seems the NHS doesn't support funding the tests for haemochromatosis but they should or could at least suggest I have a private test done. It is doubly distressing that the nurse now dismisses it as being okay and that I just have lots of iron in my blood. I have so much I can taste it but am at my wits end trying to convince them to continue testing it. I will see the nurse tomorrow and intend to raise the question about it and a few other results that I am not happy with...along with the disgusting attitude about pretty much everything. I don't even get told test results when they come in ...typical example ...I have a lump in my lung ...it was spotted 7 years ago and I have only just been told! They ''assume'' it is benign but have never once checked it again....also been told I have early onset COPD...it took 4 appointments before someone finally mentioned it despite me asking the doctor for my results. She was amused that no one had even mentioned the lump in my lung and didn't tell me abot the COPD at all. I only found out when the nurse dropped it out to me. Also the hospital ordered blood tests re that lump and non were done!! I wasn't even made aware of it so that is also a question to be asked tomorrow

 

[ChrisSamsDad]

I remember signing something at my doctors to the effect of 'Yes, I **** well do want to get copied in on any correspondence to my doctor from other parts of the NHS, thank you very much!". You also have the right in the NHS to have digital secure access to all your records, this was supposed to have been in place by the 31st March 2016, so you should ask them for it and complain if it's not available.

 

[Gezzabelle]

I remember signing something at my doctors to the effect of 'Yes, I **** well do want to get copied in on any correspondence to my doctor from other parts of the NHS, thank you very much!". You also have the right in the NHS to have digital secure access to all your records, this was supposed to have been in place by the 31st March 2016, so you should ask them for it and complain if it's not available.

Questions are definitely going to be asked tomorrow and if no satisfactory answers are forthcoming then complaints will be made...starting with the practice manager and after that people much higher as I honestly feel I am being both neglected and insulted with the way I am being treated.

 

[Brunneria]

Chase the Bronze diabetes/haemochromatosis (sp?) thing, even if you have to demand a referral.
Can't believe they aren't following it up.
And ask for a private referral if they still won't play ball.

I believe the effects of high iron are slow, cumulative and irreversible, so you NEED to have it checked, if only to eliminate it.

I would be considering changing docs at this point, since they are being so unhelpful!

Hope it all goes well, and please keep up informed.

 

[sud5nala]

Thank you for your input. I do know of that condition but my gp refuses to even consider it and I get accused of spending ''too much time on Google''!! (snip) It is doubly distressing that the nurse now dismisses it as being okay and that I just have lots of iron in my blood. I have so much I can taste it but am at my wits end trying to convince them to continue testing it.

OMG, what a tale. Then there was that Nottingham girl who died after NHS insisted her cancer was cured and to "stop Googling". The story finally became a national scandal 2 years after her death. NHS even apologized.

Here's a feature on public outreach about haemochromatosis. American doctors aren't taking it seriously either. But there's a cheap mail-in genetic test for it, using cheek swabs. http://www.americanhs.org/irish in the blood.htm

Your blood pressure reading is higher than high as hypertension starts at 140. I have had high BP twice ever, due to bad reactions to medication. The pressures topped 160. I could feel that, and I'm telling you, the sensation and the emotional effect are ghastly. One medication did this to me for a morning. The other medication, for two weeks -- after I discontinued it. High BP besides being a disease in itself also aggravates others, including diabetes. Nice of them to give you BP pills, but they have a duty to do better by you. Good luck.

 

[Hiitsme]

@Gezzabelle
Just to send my best wishes for tomorrow and hope you can get some answers or at least a way forward.

 

[chalup]

I find it interesting that that testing link is "irish in the blood" I am Canadian and my friend with hemochromatosis is from Newfoundland. Apparently there is a higher than average number of people from this region with this disorder. Newfoundland was originally settled largely by the Irish.

 

[Gezzabelle]

I find it interesting that that testing link is "irish in the blood" I am Canadian and my friend with hemochromatosis is from Newfoundland. Apparently there is a higher than average number of people from this region with this disorder. Newfoundland was originally settled largely by the Irish.

Hmmm don't think I have any Irish in me...just ferritin levels of 299 instead of the normal which I believe is 150. Interesting though

 

[Gezzabelle]

Nurse has noted my concerns and has made an appointment for me to discuss them with a doctor a week on Thursday. She had no clue about Hemochromatosis but perhaps the doctor will have. I pointed out that my ridiculously high ferritin levels cannot be left out of control and she agreed....(so why did she tell me my level of 299 was fine??) Hopefully I will find out more after seeing the doctor.....watch this space but don't hold your breath lol

 

[sud5nala]

http://haemochromatosis.org.uk/haemochromatosis/testing/

 

[Hiitsme]

Hi @Gezzabelle
Hope the doctor can come up with some answers but at least your concerns have been noted,