# Wrong diagnosis



## Rafferty (Jan 23, 2020)

Hello I have for 5.1/2.years been told I an type 2 diabetic brought on by daily steroid use  for another problem I have...on last hospital admission I was told as my pancreas has shrivelled away to just the end due to steroids and pancreatitis/ pancreatic insufficiency I'm now type 3C.... Treatment is no different, still insulin...But my goodness general drs just look at you as if you have 2 heads...I've had multiple admissions to a&e for other conditions and I've even had nurses document me as type 2... say never heard of 3C and their paperwork doesn't have a box to tick! Please anyone out there who has type 3C please tell me how you deal with this???? Many thanks, Rafferty..


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## rebrascora (Jan 23, 2020)

Hi and welcome

I am sorry to hear that your pancreas has been damaged by the steroids but pleased that you have now got a correct diagnosis. There are a few members of the forum who are Type 3c, so hopefully they will spot this and respond but I think in the absence of an option on forms for 3c the nurses should probably be ticking Type 1 since your pancreas no longer has the ability to produce insulin, whereas most Type 2s are able to produce insulin but are resistant to it.  The whole categorization of diabetes needs a bit of an overhaul as there are so many people misdiagnosed and there are now believed to be many sub types of even the two main categories.
How are you managing your levels and which insulin(s) are you using. Just wondering if you are on mixed insulin or a basal/bolus system which I would think you would be entitled to as a Type 3c (but perhaps not as a Type 2) and can provide more flexibility in your food choices and eating regime.


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## Rafferty (Jan 23, 2020)

Hello Barbara, thank you for your swift reply...I take lantus solostar 16 units on waking,my waking levels can vary from 4.1 upwards to 8.6 but generally sit around 6.5... with odd hypo of 2! I have apidra solostar to use as and when, because of pancreatic insufficiency instead of guessing how many units to take before meal, endocrinologist has said to take reading after meal then correct, (this doesn't always work) but if still too high I just take a couple of more units...
I used to have to be below 8 target but that has now been increased to 10...to be honest some days I seem to be in a tizzy as to what to take/ do... I saw diabetic nurse last week and although said has heard of it couldn't give any advice...hence when I saw this forum thought I'd give it a try....


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## Eddy Edson (Jan 23, 2020)

Just tagging @eggyg - she's the poster-child for Type 3c eggsellence. In this thread she posted a link to her story: https://forum.diabetes.org.uk/boards/threads/my-story-krankypanky-awareness-month.83934/


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## Rafferty (Jan 23, 2020)

Thank you so very much for directing me across.I read each article and links....for a long time I fobbed off I had IBS.....was interesting to read, ...


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## eggyg (Jan 23, 2020)

Hi @Rafferty and thanks @Eddy Edson for the tag. Poster child! I’m taking that as a compliment.
I’m afraid we may as well have two heads then at least we’ve have a spare one after we’d wrecked the other one after banging it on a brick wall! I’ve had donkey’s years to learn how to deal with it.
1. Educate yourself and your HCP, they know nowt about “ normal” diabetes never mind the weird ones!
b. Keep taking the meds, you’re on the right treatment for you so doesn’t matter what type we have.
3. Do your best to get re categorised as Type 1 ( as you know we’re not on any tick/drop down boxes nor in any pigeon holes. This will enable you to access everything you may need in the future ie a pump. As a Type 2 it won’t be considered.
z. Dig your heels in at every opportunity, they’ll get so sick of you in the end they’ll give in!
Good luck with it and try not too worry. Any questions, fire away. Elaine.
Just had a thought, do you take Creon?


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## Rafferty (Jan 23, 2020)

eggyg said:


> Hi @Rafferty and thanks @Eddy Edson for the tag. Poster child! I’m taking that as a compliment.
> I’m afraid we may as well have two heads then at least we’ve have a spare one after we’d wrecked the other one after banging it on a brick wall! I’ve had donkey’s years to learn how to deal with it.
> 1. Educate yourself and your HCP, they know nowt about “ normal” diabetes never mind the weird ones!
> b. Keep taking the meds, you’re on the right treatment for you so doesn’t matter what type we have.
> ...


Hello and thank you so much for your informative reply...I was feeling pretty baffled as no one believed me...Yes, I was put on creon after CT scan showed the steroids have taken the "feather" part of my pancreas away, they've also knocked out my arsenals so it's catch 22 I now have to take steroids daily! On plus side they keep my bronchial tubes clear,even though causing so much other stuff...it was good to hear about if I can get gp etc to change classification to type 1 about pump...it'd certainly help me...on my numerous admissions k nd to hospital they always hook me to sliding scale and life becomes that little bit easier not having to worry how many units to inject....so I will mention it tomorrow at blood test...Thank you...I'm heading I not hospital to have a power port fitted as year's of blood transfusions and other blood product treatment I have 3 weekly has wrecked my veins,too brittle now...so if that all works and perhaps gp will be sympathetic to me ,maybe 2020 will be more manageable....so kind of you to reply so quickly, just to have someone answer and not say "never heard of it"


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## Rafferty (Jan 23, 2020)

Arsenals??????? That's adrenals.....!!!!!


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## everydayupsanddowns (Jan 23, 2020)

Welcome to the forum @Rafferty 

Sorry you’ve been having a bit of a rough time with HCPs. 

We have a few Creonistas here, and I am wondering if we can update the ‘types’ so that our 3c folks can have a label of their own. 

Several 3c members have joined over the years, but @eggyg has stayed connected to the forum longer than most 

See: https://forum.diabetes.org.uk/boards/search/32093978/?q=3c&o=relevance


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## Rafferty (Jan 23, 2020)

Thank you,the replies I've had have given me more hope than I've ever received....
Question as I'm new,do I continue on this chat,or do I head to another part? Also if there was a heading 3c I'd go straight to it....


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## Rafferty (Jan 24, 2020)

Just an update: went for blood test this morning, mentioned can my classification be changed to type 1 as they don't know about 3c, got told, no, we will leave things as they are...I said I'd joint forum and had lots of helpful advice,got told "yes but not professional's" I said no, but lots of years of experience...I got given raised eyebrows....but I will persevere,I have blood tests monthly so perhaps I can persist....


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## Ljc (Jan 24, 2020)

Keep trying , I would try Gp next, or if you are still under the hospital diabetes team , them next 
You could also call our helpline for advise

03451232399


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## Rafferty (Jan 24, 2020)

Thank you for the advise....I have appointment with endocrinologist next month so going to ask him to write to gp....


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## everydayupsanddowns (Jan 24, 2020)

Rafferty said:


> Question as I'm new,do I continue on this chat,or do I head to another part?



Feel free to start as many new threads as you have questions 

there are different sections of the forum which can help get the right sort of responses to your threads (eg food, exercise, or general questions), but don’t worry overly. The mods can always move or split threads if it seems that they would do better in a different section and to keep things tidy


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