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6 months today since been diagnosed

Discussion in 'Newly Diagnosed' started by martl, Apr 10, 2019.

  1. martl

    martl Type 1 · Member

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    Hi everyone, I've not posted on here before. I joined a few months back and have read the odd post to get advice here and there. But I thought I'd break the silence as today it's 6 months since I was first diagnosed with diabetes. I'm 36 years old.
    Last year I asked my GP for a blood test as I was thirsty all the time, seriously dehydrated at night, constantly tired and lacked concentration at work. My blood sugar levels came back at 31 and I was diagnosed with type 1 diabetes, controlled by insulin.
    Further testing found that I was actually negative for type 1 and type 2. They were still not quite sure what I had until my sister suggested I may have a rare condition called MIDD (maternally inherited deafness and diabetes) which affects about 1 in a million people - lucky me! I'd also progressively lost my hearing and suffer from terrible tinnitus for the last 8 years. So I've been referred to genetics researchers for further tests.
    Anyway, my diabetes journey has been tough. Finding the right balance of insulin dosage is difficult as my body seems to fluctuate in terms of how much I need and it's led to a lot of hypos. It's gone from 1:1 to 1:2 and back again. I use Novo rapid and Levemir long lasting. Most of my hypos happen at night and wake me up. As I'm sure many already know, it's a horrible feeling.
    The parts of my life this disease has affected is far reaching. My main passions, food, walking, football, gym, music all affected by MIDD. I've put on a fair bit of weight. I was quite slim and toned before and now for the first time I have a belly.
    I use to love eating spontaneously but now have to have real discipline in what I eat. When the donuts are being passed around the office, it's a killer to pass them up.
    I've got used to the injections even though some still really hurt. It's when I'm out and about that I hate having to inject. I was at a village food fayre at Christmas and had to inject on a bench next to a mother and child. I felt like a junkie and an outcast. It was horrible.
    There have been real downers along the way, wondering how I'm going to carry on like this for the rest of my life and if it'll kill me off early. Even with my wife's support it's been very lonely. The NHS Diabetes Clinic often took weeks to respond to the questions I had in the early days. Others don't really understand how insulin controlled diabetes works. I mean what kind of disease is treated with jelly babies?!
    I've accepted things in my head now and seem to have mastered my dosage and BSL. As long as I'm not having hypos I'm quite happy to inject and monitor bloods constantly before eating and driving.
    Sorry for the long post. I'm probably saying what's been said a million times before. But I wanted to share. I hope others are coping well on their journey. And I'd be happy to help with advice for any newly diagnosed type 1 sufferers.

    Martin x
     
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  2. Guzzler

    Guzzler Type 2 · Master

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    Hello and welcome. MIDD is, as you say, quite rare. I am deaf (though still have some vestigial hearing on one side) but I am lucky in that I have T2 not T1 and insulin is something I have no experience of.
    I have only seen one or two posts from members with MIDD so perhaps you could use the search function (if you havn't already) to look at their posts.
    Tinitus has recently become more of a problem for me (I also have Menieres Syndrome) so you have my sympathies.

    Edited Typo.
     
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    #2 Guzzler, Apr 10, 2019 at 10:42 PM
    Last edited: Apr 10, 2019
  3. Debandez

    Debandez Type 2 (in remission!) · Well-Known Member

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    Hi Martin and welcome

    What a journey you have been on. I really feel for you.

    I've had a quick search for MIDD posts. I am tagging in @Smallbrit who may be able to help.
     
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  4. Smallbrit

    Smallbrit Type 2 · Well-Known Member

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    Hi there! I hope your genetic tests are useful. It's not occured to my GP/diabetic nurse to follow up with that - they seem happy to have decided that I am type 2, on the grounds I'm not type 1 - and I think I might have 'solved' my diabetes in their eyes before they felt the need to get to the root of things. But misdiagnosis of type 1 or type 2 often happens with MIDD.

    I'm fairly sure I have MIDD as I'm following exactly the same path as my mother: been going progressively deaf since my 20s/ late-30s diabetes diagnosis. I never had the foresight to ask my mum if it was type 1 or 2: I just remember she used insulin and massive injection needles. I brought MIDD up with my GP, who'd never heard of it, and he decided we shouldn't try metformin because of it. And that was that - like he just assumed I was right, and that I'm managing diabetes by diet and there's nothing to look into. I can't decide if there is or there isn't... I don't know if knowing would change anything, for me at least. But I do have a daughter, and she should be prepared.

    I lived in the US for ages and I use a private audiologist here as I have non-NHS hearing aids so my NHS records have a massive gap in them and no hearing-related things at all. Just that I returned five years ago and then got diagnosed with prediabetes then a massive jump to type 2 (GAD testing was done). But I brought HBA1C levels down to prediabetic levels with low carbing, and... that seems to be all anyone is interested in.

    Everyone was just glad I wasn't born deaf. No one told me that I would be profoundly deaf by now. Nobody even thought about diabetes. Oh, I have evil tinnitus too. I was complaining about it to my husband recently, and he innocently assumed it didn't bother me any more and had got worse. No... it's always here and always annoying, I just felt the need to moan at that point. But moaning about it every day for 18 years would have driven us both crazy!
     
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  5. Freema

    Freema Type 2 · Expert

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  6. martl

    martl Type 1 · Member

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    Hi Guzzler, thanks for the reply. I searched MIDD it (as a condition) on here when I first heard of it and it was surprising to see something that explained s much to me. I'm not too clued up on menieres but tinnitus is horrible. Hearing aids with masking devices do work eventually but the tinnitus always returns when you take it out. I also have the hearing loss mostly on just the one side, although now the other ear is joining the party :(
     
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  7. martl

    martl Type 1 · Member

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    Thanks Debandez :)
     
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  8. martl

    martl Type 1 · Member

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    Hi Smallbrit,

    It's odd. I explored so many avenues with the deafness and tinnitus, including spending big bucks on a private consultant and no one could pinpoint why it was happening in my late 20s. But then when the diabetes came along, I did ask both my Diabetes Doctor and my Audiologist if there was any link between the two. The Dr said no, and the Audiologist said she'd heard a few theories but nothing concrete. Then my sister did some online research and found out about MIDD, and it matched me completely. Mum has diabetes (she's prediabetic but on the verge of Type 2) and is very deaf. I got the deafness first in late 20s and diabetes in mid 30s, similar to you. I sent my Dr this info and they agreed, and sent me to the Genetics team.
    Please push the issue with your doctor. I know what you mean about what use does it do knowing, but for me it was so important to have an explanation to these two conditions that adversely affect my life so prominently. And even if there is no existing cure, it's so rare that the more research they can do into it can potentially help others in the future.

    Re your daughter, if it's any consolation, none of my siblings have MIDD, so fingers crossed. We're expecting our 1st next month, so luckily as it's maternally inherited, my MIDD won't be passed down to our little one.

    Tinnitus is a ******. As if deafness isn't bad enough, a constant screeching in your ears, it's like hell! But as bad as it is after years I think you do get used to it and my hearing aid masking device does help with it. Just costs thousands of pounds (I've done it privately too to get a proper in ear one).
     
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  9. skellysheroes

    skellysheroes Prediabetes · Newbie

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    Hi Martl
    I am new to the forum and it was interesting reading your post regarding MIDD. I have type 2 and have had hearing aids for about 8 years. I am 40 and was diagnosed type 2 about 6 months ago. My has midd and I am going to the genetic clin ic mid August for testing. Following a phone appointment they feel pretty sure I have the condition also.I know you're type1 but was curious to know if you have to take additional medication /vitamins etc to help or just insulin and if so do you feel any better physically. I feel like I have been tired and fatigued for about 15 years lol even with better diet and exercise. Oh and good luck going forward pal
     
  10. martl

    martl Type 1 · Member

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    Hi, good luck with your appointment and sorry to hear about your plight. It's rubbish, especially at this age.

    I'm just on insulin. I did try out glycazide at one point but my levels shot up. I'm now on hearing aids in both ears as my right ear had deteriorated too but seems to be a few years behind the left.

    Strangely I'm not actually type 1. I'm not type 2 either. I tested negative for both. Apparently I'm somewhere in between but they don't know what. I just say I'm type 1 as it's easier to explain and because I treat myself very much like a type 1 would.

    In terms of energy levels I noticed an immediate difference as soon as I started taking insulin. When I was diagnosed diabetic my blood levels were 38! Now I average 6.3. Before I was so lethargic and couldn't get off the sofa or couldn't concentrate on meetings. Playing football would wipe me out the next day. Now I feel normal again.

    When i started on insulin I put on 10kg in 2 months which at my skinny size was a lot, and now I find it a lot harder to stay in shape.

    Hope your own journey goes easy on you. Please keep me posted on any developments on the midd front. It's such a rare condition, so info on it is scarce.

    Cheers

    Martin
     
  11. skellysheroes

    skellysheroes Prediabetes · Newbie

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    Cheers I will keep you informed, got clinic mid August so have stopped taking metformin and statin in the meantime incase I have been wrongly diagnosed type 2,,,,hearing not good at all but get by with aids and it doesn't bother me at all wearing them anymore even with a bald head. What worries me more is my sight, my mum is midd any practically blind at 69 and has been on a gradual decline for 10 years. Sorry to sound so depressing just trying to share info... Will keep posted
     
  12. skellysheroes

    skellysheroes Prediabetes · Newbie

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    Appointment for genetic testing was cancelled unsurprisingly and swapped for phone consultation in which I was diagnosed midd over the phone due to family history coupled with my symptoms. They said I would have testing in 4-8 months and this is just a formality and I need to take multi vit and vit D. The strange thing is I had regular blood test at docs last week and hba1c has come down to 43 from 52 putting me in prediabetic range, considering I stopped taking metformin and statin over a month ago due to the suggestion it wasn't wise for midd patients and only a slight change to my diet.
     
  13. martl

    martl Type 1 · Member

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    What does the vitamin supplements help towards? So that's good news that you're moving towards being pre diabetic isn't it? I don't think that's an option for me as I'm pretty much type 1 in the way mine is treated. Worrying what you said before about loss of sight. I feel like mine has deteriorated recently but my annual retinal scan was cancelled due to COVID-19.
     
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