# Type 2 husband - really struggling



## Sarah1984 (Dec 8, 2021)

Hi everyone my name is Sarah and I am trying to see if anyone can help.  My husband was diagnosed with type 2 two years ago, he isn’t overweight and has never been.  In this time he has cut out all carbs, seen a nutritionist and exercised at least 3 times a week which was normal before anyway. His is on metformin and has lost almost 2 stone since diagnosis, he’s 6ft and now weighs 10st 10ish.  He is loosing control of his blood sugar and Hba1c has gone up to 66 despite eating healthy and it coming down to 30 after diagnosis at 80 2 years ago.  He always eats healthy and eats small carbs, he will never eat (chips, pasta,rice ,cake,pizza,biscuits etc) he has been on a high fat diet to try and gain weight to no avail so much so he now has high cholesterol.  We think he needs insulin, what are your thoughts and why is it so hard to get the doctors to take action? He now also has health anxiety as it makes no sense Thanks Sarah


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## Inka (Dec 8, 2021)

Welcome @Sarah1984  The first thing to ask is about your husband’s diagnosis? Is he definitely Type 2 rather than Type 1? Far too many adults are misdiagnosed as Type 2 when they’re actually Type 1. Type 1 comes on more slowly in adults sometimes but is actually more common in adults than children.


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## Leadinglights (Dec 8, 2021)

Given the situation you describe I would be asking for a review of his diagnosis as it sounds as if he may actually be Type 1.
There are a few people here who found themselves in a similar situation and requested the tests for Type 1, unfortunately GPs are hesitant as they often don't recognise That a more mature person can get a Type 1 diagnosis. The tests results do take a while to come back though.
Meanwhile you should try for referral to a specialist diabetes clinic as they will be more knowledgeable that the GP


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## Sarah1984 (Dec 8, 2021)

Inka said:


> Welcome @Sarah1984  The first thing to ask is about your husband’s diagnosis? Is he definitely Type 2 rather than Type 1? Far too many adults are misdiagnosed as Type 2 when they’re actually Type 1. Type 1 comes on more slowly in adults sometimes but is actually more common in adults than children.


Thank you so much for responding we have asked and asked this question to many doctors he’s been to endocrinologist to rule out overactive thyroid and we keep being told type 2.  His c-peptide levels were 600 a year ago and that suggests he was still producing insulin.  We don’t know what they are now though.


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## rebrascora (Dec 8, 2021)

Hi and welcome

So sorry to hear that your husband is doing all the right things to try to manage his diabetes and being kicked in the teeth with poor results after an initial improvement. It sounds to me like he may well not be Type 2 but in fact a slow onset form of Type 1. The designation of diabetes Type is largely based on guesswork and in some cases outdated or deficient knowledge. Just to explain..... Diabetes is diagnosed by an HbA1c test and a reading of 48 or more gets you a diagnosis.... technically it should be 2 readings over 47 just to confirm it. But that just tells the doc that you are diabetec. The Type is usually based on clinical signs..... so being overweight or a poor diet or a family history of Type 2 and unfortunately also age..... Many health care professionals including GPs believe that Type 1 diabetes only exhibits in children and young adults, so if you are a mature adult, even if you don't necessarily fit the profile, you must be Type 2, but a lot of mature adults develop Type 1 diabetes later in life and there are many of us here on the forum. Often it is slow to develop and you don't see the rapid deterioration that happens with young people. Some people don't produce ketones possibly because their bodies are still managing to produce just enough insulin to prevent high ketone levels which again doctors assume means that you can't be Type 1. I don't think there is any specific test for Type 2, but there are 2 specific tests for Type 1. Unfortunately they are expensive, not generally known about or understood by GPs and one of them takes weeks to get a result.... and to make matters worse, those tests can occasionally be inconclusive.

I think, from the circumstances you have outlined, I think it is highly likely your husband is a lsow onset Type 1 and he needs insulin. He also needs to push for a referral to a diabetes clinic to see a consultant and ask for Type 1 testing. 
If you husbands Blood Glucose levels are high (mid teens or above) then he needs to take his exercise steady rather than busting a gut in the gym doing weights etc because those high levels can put his body under a lot of strain if he pushes himself too hard. Intensive and explosive exercise will also raise BG levels even higher, so I would encourage him to go for a regular brisk walk, swim or gentle cycle ride until his diabetes is more under control..... basically gentle aerobic activity rather than muscle burn stuff.

I hope you are able to get in touch with his health care professionals and push for a referral for him and possibly get started on insulin in the mean time. Do make sure his health care professionals know how low carb he is eating to try to gain control and that he is becoming under weight.


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## Inka (Dec 8, 2021)

Did he also have the test for the Type 1 antibodies? That and the C Peptide are the main tests. It’s possible his C Peptide has declined as apparently it’s not always an accurate indicator early in diagnosis. This is because older adults with slower-onset Type 1 retain some insulin production for longer.

Either way, if he’s losing weight and can’t eat properly, I’d think insulin was the way forward. I’d also push a bit more about Type 1/LADA just to rule it out for sure.


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## rebrascora (Dec 8, 2021)

The situation has clearly changed if his HbA1c has suddenly jumped up again and that suggests that he is now producing less insulin and getting to the point that he cannot produce enough to survive. What happens with slower onset Type 1 is that the beta cells which produce insulin get killed off more slowly and going on a low carb diet can take the strain off them and if they are less stressed they can regroup and start to cope again for a while but it is only a question of time before there are not enough of them to produce sufficient insulin to keep levels in check and they start to rise again. 

The other test for Type 1 (along with the C-peptide) is the GAD antibody. The two done together give a better overall picture but the results should really be interpreted by a specialist because they are not always clear cut.... like your husband's previous C-pep.


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## Sarah1984 (Dec 8, 2021)

Thanks for both responses Barbara you are confirming what I was thinking.  I just hope the doctors see it like that.  He can’t go on like this for another year! X


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## rebrascora (Dec 8, 2021)

Point out to the doctors that he also doesn't want or need to be an emergency admission to hospital over the festive season and it could very rapidly get to that stage. Preventing an emergency admission to hospital should be a primary concern to your GP. Far better to start him on insulin now than risk that and get an appointment sorted out with a consultant in the New Year. It may sound dramatic but it is a clear possibility. Once his body reaches the tipping point it can go badly quickly and he is already eating very low carb by the sounds of things and doing exercise so he has given his body as much help as he can but levels are still rising so it wouldn't take many more beta cells to pop their clogs before the scales start to tip in the wrong direction.


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## Sarah1984 (Dec 8, 2021)

Thanks I will do that. I’ve already said to him as his eyes are dry again and he is getting up for a wee in the night and thirsty etc that I will take him to primary care if needs be.  I’m not waiting for things to turn bad because of not being diagnosed.  He has a follow up next week regarding blood tests etc anything happens in the meantime I’ll take him!


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## Inka (Dec 9, 2021)

Be pushy @Sarah1984 - polite but very firm. Mention of complaints usually focuses their minds, I find. If they agree to do further tests, _still ask for insulin in the meantime_. Don’t let them give him Gliclazide because if he is Type 1, that will squeeze the life out of his remaining beta cells. Early introduction of insulin, on the other hand, can preserve them.


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## everydayupsanddowns (Dec 13, 2021)

Sorry to hear about what a tough time your husband is having @Sarah1984 

Let us know how things go at his follow-up appointment.


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## Sarah1984 (Dec 15, 2021)

Had the GP appointment this morning... he is being referred back to endocrinology with the notes she has taken to see what they can do in terms of insulin etc.  It's a long slog!


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## Lily123 (Dec 15, 2021)

Sorry I’m a bit late to this thread. @Sarah1984 I think there is quite a chance that your husband is type 1 or LADA rather than type 2. It’s good that he is being referred back to the endocrinology. Hopefully you’ll get an answer


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## Sarah1984 (Dec 21, 2021)

We are still waiting for the endocrinology appointment to come through, does anyone know of any private endocrinologists we could consider using in the north west... he's losing more weight and there is no more to lose?!


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## Drummer (Dec 21, 2021)

Sarah1984 said:


> We are still waiting for the endocrinology appointment to come through, does anyone know of any private endocrinologists we could consider using in the north west... he's losing more weight and there is no more to lose?!


Maybe contact all involved and say you are really concerned - because you obviously are - ask about emergency cover over Christmas, danger signals, ambulances  and suchlike things to try to get them to do something sooner. You don't have to go overboard, just worry THEM a bit.


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## Alan S (Dec 22, 2021)

Sarah1984 said:


> Had the GP appointment this morning... he is being referred back to endocrinology with the notes she has taken to see what they can do in terms of insulin etc.  It's a long slog!


I echo the others. As he is seeing an endo please ask that they include testing for all types including LADA and MODY.


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## Sarah1984 (Dec 30, 2021)

Been for bloods today and endocrinologist has instructed full hormone tests and finally a T1 antibody test ahead of his appointment we haven’t received the date for yet - thank goodness for that.  Hopefully we will get answers soon


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## Lily123 (Dec 30, 2021)

That’s good that he has now had the tests


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## Sarah1984 (Jan 20, 2022)

So we are still none the wiser… all bloods ok and no type 1?! He continues to have all the symptoms of high blood sugar and despite being given gliclacide along with metformin blood still 17-22 whilst only eating 60g carbs per day, 2 dog walks and a 15 minute work out he continues to lose weight now 6ft and 10 1/2 stone.  Waiting for urgent scan and have been for 2 weeks no news yet! Let’s see what tomorrow brings…


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## rebrascora (Jan 21, 2022)

I don't understand why they haven't started him on insulin. Regardless of Type, he is clearly failing to metabolize that glucose with levels that high and losing weight and he is obviously doing everything within his power to bring them down.

Did they do a C-peptide test and do you know the results of the Type 1 tests he had done. Not just someone's interpretation, but actual numbers? I would be pushing for insulin regardless of anything else. He also needs to go easy on the workouts when levels are that high. Walking/gentle cycling/swimming is good but putting his body under strain of intensive work out when BG levels are mid teens or above is not recommended.


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## Sarah1984 (Jan 21, 2022)

Thanks for your response his c-peptide was 430 and it's looking negative for type 1 with some results he's has back.  They've had to repeat the main type 1 test sos till waiting on that.


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## Sarah1984 (Jan 28, 2022)

So tomorrow is the day my T2 extremely thin husband will get some help with his constant high blood sugar.  Appointment with diabetic specialist for insulin, however he has lost more weight and the doctor has finally decided to investigate as to why he has no control and he’s lost 2 1/2 stone.  Type 1 test clear and CT scan on Saturday!


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## rebrascora (Jan 28, 2022)

That is a relief. he will feel so much better once he starts on insulin. I hope you are able to go in with him as 2 heads are better than one in these situations and do have a list of questions ready. 
Ask for a basal/bolus insulin regime as this will give him more flexibility with meals and exercise. 

Personally I think he will still be Type 1 but the tests have just come back inconclusive for some reason which does happen occasionally.


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## Sarah1984 (Jan 28, 2022)

So... finally! He is being treated as type 1, starting on a low dose of Lantus once a day and then going back to specialist for a quick food acting insulin in a week or so. His C-peptide at 430 she thinks he's a slow burner and that will eventually go lower and lower.


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## Windy (Jan 28, 2022)

I'm really glad to hear that you've got them to start his insulin. I'm horrified how many hoops you've had to jump through and how much weight he's had to lose before you've got this far. 
Glad that something's happening at last, Sarah


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## Sarah1984 (Jan 28, 2022)

Thank you to you and everyone else for your support and guidance, you guys are amazing!!! Xx


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## EmmaL76 (Jan 28, 2022)

Sarah1984 said:


> Thank you to you and everyone else for your support and guidance, you guys are amazing!!! Xx


I can almost feel the relief coming off the screen from you. Hope your husband starts to feel better soon, and tell him he’s a lucky lucky guy to have such a caring wife xx all the best xx


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## Bloden (Jan 28, 2022)

That’s great news @Sarah1984. Must be such a relief.


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