How to I deal with all this?!

[ModyGirl]

I am at breaking point.

I have MODY. I was initially diagnosed with gestational diabetes in 2016 with a Hba1c of 54. Down to 42 by the end of the pregnancy and told to discontinue insulin after delivery.

Six months later I went in to DKA...No idea what my sugars were over those six months as was told not to test. However Hba1c was 44 at this point. Should add that I had gastroentretis which endocringologist said probably tipped me in to DKA as it's unusal for MODY's.

No signs of any complications or retinopathy or anything at this point and Hba1c's ticked along in the 40's and 30's (particularly while I was pregnant for a second time in 2019).

November/December 2020 - Started to get the most unusual symptoms. Woke with a deep ache and pins and needles in my forearms, felt faint, dizzy and off balance, brain fog/feeling spaced out, nausea, one episode of electric shocks shooting down both arms and a sudden carpal tunnel sensation and weakness in my limbs. After about 3 or 4 months - everything went away! I definitely didn't think it could be down to diabetes.

Then in October 2021 I got covid and developed POTS the same week. January 2022 I got the booster and developed even worse symptoms! Nausea was back, temperature dysregulation, sweating but cold at the same time etc, fatigue, brain fog, low blood pressure, dizzy/off balance, internal vibrations, burning feet, adrenaline rushes linked to the POTS. However, most things cleared up with the odd symptom popping up throughout the year but never at the same time.

A few weeks ago I woke feeling sick to my stomach again. I have all the signs of gastroparesis which wouldn't be surprising since a neurologist diagnosed me with small fiber neuropathy before Christmas. For example, before I had lunch today, my BM was 5.6. 2 hours later, 5.8, 3 hours later, 8.2 and 4 hours later 7. My vision is sometimes blurry, the aches in my arms are back, my blood pressure is dropping which for me feels like a hypo, but it's not. I'm fatigued, pale, coat hanger neck pain, brain fog/spaced out feeling is back, tingling/sunburn feeling all over my body that comes and goes, crawling feeling on scalp, burning feet come and go but have had that too.

I feel so very unwell. I'm going in to third week off work this week. I'm a teacher and just cannot be in work feeling this way.

Had nerve conduction tests last week which were normal. I'm due to see the neurologist again on April 12th but he already said before Christmas there was no cure etc.

I'm really, really struggling with the thought of having gastroparesis at the age of 34 more than anything. I feel so terribly unwell. If I'm like this now, what am I going to be like in 10, 20, 30 years?!

I don't take any medication other than Lantus and Novorapid insulin. I don't feel like I need pain relief at the moment it's just all the other symptoms.

Not much point to this post but I'm yet to come across anyone like me! My last Hba1c was actually the highest it had been at 56 but my symptoms mysteriously started 3.5 years in to diagnosis with Hba1c's which had been in the 30's and 40's. I am getting the libre fitted on Friday to better my control.

Any advice or similiar experiences would be much appreciated.

 

[EllieM]

I'm so sorry you are having such a difficult time. Gastroparesis is apparently very common in T1s but I must admit I am struggling to understand how you've developed it so quickly and with such low hba1cs?

In your position I'd be urging the specialist(s) to consider all options rather than just sweeping your symptoms into the "has diabetes so it must be gastroparesis" basket. Are you seeing someone who is experienced with MODY?

All I can really do is wish you luck and hope that you can get effective treatment to manage this if it is caused by gastroparesis and a better diagnosis if it isn't. A quick google suggests that there are things to be done to manage it, should your symptoms be caused by this.

Once more good luck.

 

[ModyGirl]

@EllieM thank you for your reply. I am feeling so sorry for myself tonight and just don't know where to turn. I'm tired of getting nowhere with doctors/specialists and for constantly waiting for appointments that get me nowhere.

My Dad has diabetes (assuming MODY as it's all on that side of my family - but I am the only one who has had the genetic testing as I didn't fit the mould for Type 1 or 2) and he has absolutely none of my disabling symptoms. He's had it for around 35 years and his control wasn't bad, but not as good as mine! My aunt has had it for almost 50 years and again good control, but not like mine and no complications!

I can't understand why this is happening to me. Am I really just that unlucky? I have read that damage occurs even in pre diabetes...

I didn't think things like a crawling feeling on your scalp and sun burn on your back feeling were caused by diabetes. My appointment can't come quick enough. I just want to live and enjoy my life!

 

[HSSS]

Could it be something unrelated to diabetes? B12 for example, or some sort of neurological issue? It’s easy to blame everything on diabetes but sometimes it’s a red herring. Perhaps ask what they’d be investigating if you weren’t diabetic And insist they do so for you

 

[ModyGirl]

@HSSS I think a lot of the time people just get told it's idiopathic and there's nothing they can do. I think I've developed all the symptoms really quickly. I don't know of any other diabetics who have all this autonimic dysfunction this soon in to diagnosis.

I really want to try B12 injections but want the neurologist to run the tests first. I don't want to scew any results. Thanks for your suggestion.

 

[HSSS]

@HSSS I think a lot of the time people just get told it's idiopathic and there's nothing they can do. I think I've developed all the symptoms really quickly. I don't know of any other diabetics who have all this autonimic dysfunction this soon in to diagnosis.

I really want to try B12 injections but want the neurologist to run the tests first. I don't want to scew any results. Thanks for your suggestion.

Yeah b12 needs be be supplement free four 4 months to be accurate. There’s also the difference between serum levels and active (available) levels. On almost all specialised advice the lower end of range (150-200) can still be highly symptomatic for some and levels closer to 1000 are advocated. Japan with low levels of neurological issues associated with low b12 treat at anything under 500. I’m trying to get b12 at the moment but if I can’t I’ll cough up for a trial course of private ones to see if I feel the difference.

 

[ModyGirl]

@HSSS do you also have symptoms? I did have a weak positive for anti parietal cells a few years back but can't get anyone to test again since my serum B12 has been in the 300s and 400s. Nobody will test my active either - it's a battle.

 

[HSSS]

@HSSS do you also have symptoms? I did have a weak positive for anti parietal cells a few years back but can't get anyone to test again since my serum B12 has been in the 300s and 400s. Nobody will test my active either - it's a battle.

Yes but they overlap with other possible causes. (iron deficiency, low vit d, lowish folate, raging perimenopause and long covid i suspect) My b12 dropped by 200 in less than six months and does the same every time I stop supplementing Despite a b12 rich diet. Currently in the 300’s so it’s all fine according to drs. Active b12 can be done privately, thriva for example. I’m not sure the nhs does it.

 

[the-mental-one]

I have had to have b12 jabs for years, you don't even have to be really low to have symptoms from low b12 and if taking supplements is not keeping your levels up you probably aren't absorbing it properly and may also need the jabs. I know when I'm needing another jab because symptoms appear that just aren't there when I didnt forget to go have it...

I also have been struggling with gastroparesis at times, but it's not always, like with you, it may well be linked to times I forgot my b12 jab coming to think of it.

Brain fog, sweats, muscle cramps, weird pins and needles in my arms and shoulders whether anything was pushing on them or not, itchy feeling on my skin when I walk any distance (or cycle at all), and various other things that my docs couldn't figure out. Apparently I'm probably perimenopausal and a lot of my symptoms may be linked to that.

It may be that you have more than one thing overlapping symptoms, makes it harder to diagnose. I really wish you luck with it.

 

[ModyGirl]

@the-mental-one thank you for your comment. My symptoms seem to have settled at the moment - still don't know what's causing them though! Is your gastroparesis caused by diabetes? I was totally making a guess (and hoping I was wrong) when I said I probably had it as I couldn't explain the nausea. But I also couldn't/can't explain my other symptoms either!

 

[Lamont D]

I know what you are going through.
I have a rare condition, I was misdiagnosed with T2 but I had non diabetic hba1c and fasting. But the doctors kept telling me that the symptoms I was getting was T2.
They couldn't understand my symptoms until I found a specialist who got the tests to get a true diagnosis.
I would ask for more tests to rule out other conditions.
It is a battle, but you have to keep asking.
It is worth it!

 

[the-mental-one]

@the-mental-one thank you for your comment. My symptoms seem to have settled at the moment - still don't know what's causing them though! Is your gastroparesis caused by diabetes? I was totally making a guess (and hoping I was wrong) when I said I probably had it as I couldn't explain the nausea. But I also couldn't/can't explain my other symptoms either!

I don't know for certain, as it does seem to be worse when my B12 is lowest, like I feel bloated / full after just a few bites of food. Then the nausea can start up.

For me it's probably a mix of various things I have all comorbid with each other that can all effect the digestive system, I can say I *never* had it before I had the diabetes, and I only started with it after I had been diagnosed as diabetic for over a decade.

I only just realised it's been fifteen years since my diagnosis, it really doesn't feel like it at all. It took me three years of going in with different symptoms before they finally tested for diabetes, a year of fighting to be tested as well because I was "too young to have type 2 diabetes". It's worth fighting to have someone to run more tests and try and find out what is actually going on. You can't treat a thing without knowing what it is, and if it isn't treatable maybe you can find out better ways of dealing with it instead.

 

[ModyGirl]

@the-mental-one I was 27 and diagnosed with gestational, Type 1, then Type 2 diabetes before my consultant decided I didn't fit the Type 2 profile and tested me for MODY which was positive. Maybe you should look in to that!

It's scary how quickly the years pass and the more that pass means there's more possibility of complications arising. Quite depressing really.

Did you self diagose gastroparesis? Hopefully it is linked to B12 and isn't actually that! I've read in go it a lot and it sounds like a horrific condition!

 

[the-mental-one]

@the-mental-one I was 27 and diagnosed with gestational, Type 1, then Type 2 diabetes before my consultant decided I didn't fit the Type 2 profile and tested me for MODY which was positive. Maybe you should look in to that!

It's scary how quickly the years pass and the more that pass means there's more possibility of complications arising. Quite depressing really.

Did you self diagose gastroparesis? Hopefully it is linked to B12 and isn't actually that! I've read in go it a lot and it sounds like a horrific condition!

I did self diagnose, sort of, I am aware it may *not* be gastroparesis but something else causing delayed gastric emptying. B12 deficiency, might not be causing it but may even be as a result of something that could be causing it...

I am aware that I had an infection that is known to cause Atrophic Gastritis, which can lead to the B12 malabsorption, and delayed gastric emptying. Also that my mum was diagnosed with B12 deficiency a little after I was (I made her get tested because I recognised the symptoms), she was also told she was prediabetic from fairly young. It's hard not to see the similarities.

Things that I do know for certain: food sits in my stomach for much longer than it should, I have severe acid reflux often, I have bloating with abdominal pain frequently, nausea with either of those, can feel full really quickly, it is worse / I notice the symptoms more when I am not managing my blood sugars as well (so it's been happening a lot more often this year since I've had more trouble keeping my levels stable), I feel worse if I lie down whilst feeling it, eating fatty foods make it worse, eating high fibre foods makes it worse.

I haven't bothered asking a doctor about it, I sort of avoid doctors more than I probably should, I'm trying to avoid the things that make it feel worse (duh) and try and walk after eating and stay sat upright if not.

edit: no-one even mentioned MODY when I was diagnosed

edit 2: I realise I'm being hypocritical after I said I had to fight for my diabetes diagnosis and how it's worth fighting for a diagnosis and then "I didn't go to a doctor" but I've been so burnt out in life recently I haven't really felt up to that at the moment.