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6 months today since been diagnosed

martl

Member
Messages
12
Type of diabetes
Type 1
Treatment type
Insulin
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
 
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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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.
 
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!
 

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
 

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).
 
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
 
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
 
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
 
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.
 
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.
 
Information was very sketchy because over the phone and my **** hearing but yeah they said a mixture of vitamins is required and they would contact GP about this, the blood reading was a revelation however everything I read regarding this condition points towards the need for insulin eventually usually within a few years of diagnosis. Very frustrating that I can't talk this over with them in person.
 
The vit supps help towards the easing of muscle pains /cramps and general feeling of fatigue and lack of energy I believe, hope so because I have felt like a zombie for years and always put it down to shift work.
 
Hi Martin, I do sympathise. My Nan had very complax needs as a diabetic. Memories of her experiences have been at the forefront of my mind recently. She was regularly hypo or hyper and insulin dependent. Changes in seasons, especially the start of spring and autumn would be turbulent for her. Her cats saved her life at least once (they would not leave a neighbour alone until she realised the cats wanted her to help). My Dad also saved her dodgy toe by bathing it in salt water, clearing the wound debris and massaging daily for a year. I'm new to this community, a week tomorrow from diagnosis. It was shocking to get the diagnosis (assumed T2), I was v low risk. I must have had a low tolerance to belly fat. I can't say anything that will help but wish you well.
 
Sorry to pull up an old thread but thought I'd catch up and see how suspected MIDD people were progressing with genetics appointments? @Bex72 @skellysheroes @martl

I finally, finally after years of trying had a virtual genetics appointment a month ago (with someone in Canada who couldn't make it back to the UK- yay COVID!). And they have referred me to an actual in-person consultation, as it seems reasonable I might be a MIDD person. I had to tell the consultant audiologist about MIDD and watch as he Googled it and looked very sceptical. The diabetic nurse claimed she'd look it up, but seeing as I only see her once a year because I have 'good' control (55 HBA1c on practically keto, I think not...) I don't know if she's done anything. But anyway...

I'm now completely deaf in one ear and severely deaf in the other. So am also pushing for a cochlear implant assessment. And having balance and strength issues. I feel like I've turned into my mother with all the symptoms she had. Do we really all become our parents at some point?!
 
Hi smallbrit glad you've made some progress regarding testing, I am being dealt with by someone att salford royal hospital and haven't heard anything for a few months when I was told I would attend clinic in 4-6 mths for testing (covid permitting), been advised tests will be a formality and they practically diagnosed me over the phone back then
Not taken any metformin/statin since and started on vit d and multivitamins plus large dose of co-enzyme q10
My mum is practically blind which worries me the most
 
Congrats on your six month anniversary!

My only advise is in respect of insulin I take Novorapid and Levirmir too.

Honestly I inject anywhere and everywhere. If someone wants to watch whilst I do it well that's their issue.

You owe no explanations to anyone!
 

Hi Smallbrit. I'm glad your genetics route is progressing. I had a similar experience of either scepticism or professionals having not heard of it. Sorry to hear about your deafness. It's such a rubbish thing to live with. I've found it so much easier working from home so any work interactions are via video call without all the loud background noise of the office. One good thing about covid I guess.
Knowing I had MIDD gave me comfort of why these 2 horrible things were happening to me but apart from that I found there wasn't much change.
The more people explore this route though, the more awareness this rare strand will receive.
Keep us posted.
 
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