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Type 1 with hyperthyroidism and antipsychotics for schizophrenia

Samael_Coughlan

Member
Messages
15
Location
Sydney, Australia
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Green food, meds, insomnia, reactionary politics
I was diagnosed with T1 diabetes at the age of 2. At 16 I was diagnosed with mild hyperthyroidism (managed with meds) and at 18 I was put on antipsychotics for schizophrenia and have been so for the last 3 years

As you could imagine, between the hyperthyroidism driving my sugar down and the Seroquel driving it up, my levels are hell and a half to try an manage. I'm able to maintain my weight at the lower end of a normal range without much effort. However, I have had a run with DKA earlier this year and I've been feeling more hypo spills of late.

With my girl pregnant, looking at a promotion at work and my studies getting more intense, it's getting harder to keep my already wild levels in mind and I was wondering if there was anyone else who has chronic diseases and meds that mess with their sugar levels could offer any advice, tips and tricks for managing sugar levels.

Thanks for any responses ^_^
 
Welcome @Samael_Coughlan

That must be really hard if you're battling the effects of meds on your blood sugar. Has your diabetes team offered any advice?

Is there any pattern at all to the highs and lows or are they unpredictable?
 
azure said:
Welcome @Samael_Coughlan

That must be really hard if you're battling the effects of meds on your blood sugar. Has your diabetes team offered any advice?

Is there any pattern at all to the highs and lows or are they unpredictable?
Click to expand...
Hi azure.

On the first one, it's been complicated. My psych, my endocrinologist and my diabetes community nurse have never communicated as much with each other as much as they should. The one who knows about the most about the struggle is my pharmacist. See, my psych is cautious about lowering my dose because a) I'm a bit manic when I'm psychotic and now's not the best time for happy-go-lucky me to be making dumb decisions and b) I'll lose a tonne of weight, and I don't have that much to lose as is. On the thyroid thing, I could get more invasive treatment which would destroy most of my thyroid function and the endocrinologist reckons that would make it even harder for me to manage myself and my diabetes. The last meeting I had with the diabetes team advised me to trial an overhaul of my diet and exercise routine. However, it was very strict and regular and between studying, working and prepping for the bub, I just couldn't comply to it.

In terms of what my levels usually are, I more graze on snacks throughout the day than eat meals (they cay I could never be a gynaecologist because I can't help but nibble on anything in front of me). I used to be able to keep my levels between 9 to 14 for most of the day but recently it's been all over the place without much rhyme or reason. Earlier this week I had a reading of 31 but just this morning I woke up with a scary 0.8, I hadn't hadn't had crashes that low that unprovoked since I was in my early teens.

By how some of my hallucinations are manifesting too, I think the stress might be getting to me and I don't know if that's been making it worse. With the diabetes, schizophrenia and hyperthyroidism, my body has proven to suck in all things insulin, dopamine and thyroxine related. Don't know how the added adrenaline and cortisol effects them.
 
@Samael_Coughlan I don't know anything about anti-psychotic meds, but it certainly seems a good idea to keep going with them at the correct amounts. Your mental health is very important and I can imagine that it can mess things up if you're not feeling 100% or as close as you can be.

Yes, it's hard to manage diabetes when you're working and busy. I think sometimes people without diabetes don't realise just how much work it is.

Do you count carbs and adjust your fast acting insulin to what you're about to eat?

I'm a grazer too (or greedy - whichever you prefer : D ) What I do is have 3 moderate meals and a mid morning and mid afternoon snack. That keeps my grazing side happy, along with regular drinks. I find a routine helps a lot. It's a pain, but it makes my sugars more predictable.

The other option you might want to consider is an insulin pump. It makes it so much easier to adjust your basal insulin (so hopefully avoid lows like that 0.8 you had). It's also great for people with busy lives. Just something to consider I have one and I love it.
 
Well something about antipsychotics is that it slows your metabolism and makes your liver make more sugar. This is the first wold card, the second being that hyperthyroidism makes you burn more energy and use up your sugar. I first thought this would even each other out but instead they play havoc with me.

I have tried to count carbs and still guestimate before I shoot myself up but, as my diabetic nurse loves to remind me, I'm really bad at it. I mean half the problem is that the hyperthyroidism which burns up all my fat also makes me hungry so I'm not sure how much I'll end up eating. If somebody comes to a study session and brought chips, lollies, fruit or such to share then all bets are off of how much I'll take on.

I've tried actually sticking to meal plans but how busy I will be from day to day varies and I if I lose track of myself I commit that deadly sin that makes my doc want to slap me and that is miss a meal. I wish I could rely on work to give me timely breaks or lectures to end on time or other's to not change plans but I have tried a meal plan and, lest circumstances (and my boss who equated chronic illnesses to his hay fever) change, I'm not good at keeping them.

I have thought about an insulin pump before, though I would have to talk to the healthcare team I've accumulated about it (heading cats seems to be easier than convincing a pharmacist, a psych, a diabetes nurse and an endocrinologist to have a lasting correspondence about the same topic) though I'm not sure how durable they are, how much care I would have and how I would have to change my eating habits. As a barista, my workplace oft has spills and thrills and I use swimming to destress. I'm sure Australian Medicare will take the bite off it but an $8,000 belt accessory doesn't seem like something I want to be flippant about.
 
I do understand what you mean about having to think ahead about your food and how many carbs you're goung to eat. It is annoying - to put it mildly. I do sometimes eat more than I planned and then I just have an extra bolus to cover the carbs in it.

I'm going to tag @CarbsRok because I think they know something about thyroid meds. I'm also going to tag @TorqPenderloin because he's very active and super-organised, and I'm going to tag a few other Tyoe 1s for you - @noblehead @catapillar @tim2000s That's just a few for starters. Hopefully more will be along to comment soon

My pump is an Animas Vibe. It's waterproof (you can swim with it on) and it's robust. I know this because I'm very clumsy! It can also be used with the Dexcom CGM if you were able to get that.

If you don't have a half unit pen for fast acting, I recommend getting one. It's good for tiny boluses and precise correction doses so you're less likely to have too much or too little insulin.

A quick way to carb count is simply to learn how much insulin you need for various meals by very careful experimentation. That's what I did initially - ate the same meal a few times until I'd perfected the dose of insulin I needed to cover it.

I don't know if you've ever done one but a basal test is a good starting point for control. If you get your basal right, then that gives you a firm foundation to build on. If it's wrong, then you can be fighting a bit of a losing battle.

Do keep checking back to this thread. Saturdays are often quiet here, but there are lots of Type 1s on the forum who know what it's like juggling diabetes and life.
 
Hi @Samael_Coughlan and welcome to the forum.

I do agree with what Azure says below about looking to a pump to help matters, anyway it's certainly worth discussing with your Endo to see if it's doable.


 
@Samael_Coughlan It definitely sounds like you have your hands full with work & studying. Congratulations on impending fatherhood!

Of course that's excellent motivation to want to look after yourself & it sounds like that's quite a challenge with balancing the meds. Are you on steady doses of your thyroxine and antipsychotic medication? So can you assume the way they interact with each other stays the same? Or is that more fluctuating, like a hormonal interaction?

I don't have experience of thyroid meds or anti psychotics, but, purely to make it easier for me to relate (sorry) I'm going to liken it to the delightful impact my menstrual cycle (sorry, again) has on my blood sugar and insulin requirements, which is to make my diabetic management quite variable. The way I deal with that is to test lots and adjust accordingly, so I will increase my basal and ratio when my testing shows that I'm hitting a stage in the month when I become more insulin resistant etc.

So can you look out for patterns in how the drug interactions impact on your management? If you can spot patterns, you can try to figure out ways to calm any peaks and troughs down a bit. That's where the testing lots comes into it.

Basal testing is also a good idea. It will also give you a good idea of what to look out for for patterns and how to adjust - https://mysugr.com/basal-rate-testing/ - and ensure that you have the groundwork for obtaining control in place.

Then you have to perfect the art of carb counting. If you know you aren't that great at guesstimates, then work on some ways to avoid having to guesstimate. Get digital scales and use them at home until you are sick of the sight of them! Then work out, using Google/apps exactly how many carbs are in what you are eating. That way you will just get used to knowing that a jacket potato that's about the size of your fist has Xg of carbs in, or a big ladle of pasta has Xg of carbs in etc. It does sound like a total pain in the bum, but the more you do it you will find the less you have to do it, eventually you will just find that you know the answer.

For outside of home there is the app carbs & cals - it might be really helpful to help with figuring out how many carbs you are taking on when grazing - it shows you pictures of a variety of portion sizes of whatever it is you enter in the search, choose the portion that looks most like what you are taking in and it will tell you the carb count (there's a picture of how it works - if you are eating crisps out of a bowl with a spoon, you might be doing it wrong though).

If you can't bolus before, because you are grazing and don't know how much you are going to eat, could you bolus half as you start and the rest when you have finished (or are having a pause)? Or make sure you test afterwards and inject to correct the peak?

I hope that helps with a couple of things that I have found useful (and I haven't said anything too daft about the meds I don't know about!).
 

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I've been a diabetic for 20 years and 6 months ago i was diagnosed with hyperthyroidism. This made my blood sugars very low at times i use to correct myself and it made my sugars vety high.

I found with hyperthyroidism i was very sleepless at times this put my body under strain and played havoc on my blood sugars too.

I found there was no set pattern to when it would occur. I'd get a few days in a row and then a day off so trying to adjust your insulin or carb intake was very difficult.

How long ago was you diagnosed with hyperthyroidism? It took me a few months to get it under some control. My hyperthyroidism is still slightly over active but its at a almost constant so i can control my bloods better but not perfect.

Are you on a 6 week appointment or a 2 month appointment for your hyperthyroidism?

This is all i may be able to help you with.

Sent from my SM-G935F using Diabetes.co.uk Forum mobile app
 
I'll definitely look into and talk to the team about an insulin pump then, though again I'll have to get them all to speed about it. I'm currently using Novorapid pens to keep myself in check, adjust it as I need and maybe top up if I am higher than I intend.

Hi there. Thanks, we're thinking of naming him Jaecerys (Jake for short).

I'm not of thyroxin, which is for hypothyroidism, but on Carbimazole for hyperthyroidism. Which, like I said, is a mess because my naturally high thyroid levels drives down my sugar while my psych med, Seroquel, makes more sugar (I'm also on Metformin still though I'm not sure how much use it is at this point). My pharmacist usually handles and double checks how they'll interact with my conditions and to his credit he saw my troubled coming from a lightyear away.

I do top up, as I said, half a unit or so if I'm higher than I intend (usually I prefer to keep between 9 and 14) with Novorapid though. I haven't checked my basal levels recently, though I'm not quite sure what time in the day is the best time for them as my meds, as said mess with them. I might have a talk to the DM nurse about them.

The carb calculating thing looks pretty intensive. I might look into doing that when I have a bit of time off It could be useful I suppose to have a go at it.

I was diagnosed with hyperthyroidism when I was 16, so 5 years ago. I feel for you readjusting managing your levels seeing that when I was diagnosed with schizophrenia at 18, I pretty much went through that process each time they wanted to trial a different antispychotic to figure out which ones work on me.

I'm on 2 month appointments but due to unforeseen circumstances I had to miss the last one so I haven't been reviewed for 14 weeks and at this stage the endocrinologist is just waiting to review me in a fortnight from now.

Between delusions and feeling hot and restless, I too get really terrible sleep. It doesn't help that on cold night I get this burning tingling in my fingertips and toes, I don't know which one of the evil trifecta I can attribute that to.though.



Thanks for all the help guys, your responses are really appreciated
 
What i don't understand then is if it was 5 years ago you got diagnosed with hyperthyroidism is usually after 12 months to 18 months they offer you either an operation to remove a part of your thyroid gland or have radiotherapy to kill of a bit of your thyroid gland. This is what is was told by the endocrinologist at my 1st appointment. I would seriously ask about this. Though to warn you this will involve being on thyroid tablets for the rest if your life too but this would stabilise your thyroid which would help control your blood sugars on that side.

What tablets are you taking for hyperthyroidism? I have to take carbimozle. I also take antihistamine as it makes my skin lumpy and extremely itchy all over yes all over. Its very embarrassing when in public i can assure you. I'm sure this also affects my blood sugars.

The NHS needs to look at other medication that diabetics may have to take.

I will call my endocrinologist on monday and ask why you have not been offered an operation or radiotherapy. I know every person and patient is different so they can not give me an exact. It might let me know where you stand. If you want me to i can ask?

I do feel for you mate.



Sent from my SM-G935F using Diabetes.co.uk Forum mobile app
 
I don't know how they do in the UK with the NHS. In Australia, Medicare and the PBS is the relevant bodies.

So like I said before, I was told mine was comparably sorta mind, though that it might get worse later, and when I was on anti psych drugs, which causes all sorts of metabolic shenanigans, they would play it off even longer seeing that though thyroxine speeds up metabolism, most antipsychotics slow it way down and having both induced hypothyroidism AND antipsychotics in a diabetic, it would be really hard to manage until I stabilised, should I ever stabilise. One thing my psych said was that people who take these sorts of mental health medications are at risk of developing diabetes and thyroid issues, I already had them which made thing even more complicated. I've been on a subclinical/"wait and see" basis for quite a while now, stretched out by me gaining a busy life. LIke I said, I have been offered radioactive iodine, they just don't know if it might turn out bad.

It might with a little context. I inherited this mess of my father. He was a bit older when they found out he had a hyperactive thyroid but found to have schizophrenia and diabetes at a similar age. They treated his hyperthyroidism with surgery and he really struggled afterwards. It got to the point where got frustrated and gave up feeling utterly **** from the difficult to control diabetes and the hypothyroidism, it slowed him right down and piled on the weight, as well as make him feel depressed most of the time. He ceased his schizo drugs and committed suicide shortly after.

That wasn't to bring the mood down, that was more like not only why we're really cautious about moving too fast, especially as I'm not showing all the graves symptoms, apart from being kinda skinny and feeling hot, and my TDH levels could be a lot worse. I'm a complex case like my dad and he was kinda an example of how hard it is to get right.
 
Hi samael, I'm going to come at this problem from a different angle. I have Type 1 and hypothyroidism. My son has schizophrenia and is on Abilify, which is causing some weight gain for him.
You've got lots of good advice here, but it all requires quite a lot of motivation, which is one of the first things to go when you are symptomatic with schizophrenia (and you said your symptoms are starting up again).
Another thing that strikes is disorganization. Now, obviously, you work, you study, you have a girlfriend and you're expecting a baby. That's quite a lot to manage at 21 even without diabetes and a serious mental health problem.
So, I'm going to suggest that you ask for more social support from your loved ones rather than simple medical assistance.
You do need to have a regular diet. It sounds like 90% of your roller coaster would be eliminated by a more regular routine. Can you ask your girlfriend and/or other family members to help you more with that regularity?
It would be a good habit to get into right now before your baby comes.
Once you have regular mealtimes, carb counting becomes really easy. Without regular mealtimes interpreting blood sugar results is pretty impossible.
On the thyroid issue, I have been on thyroxine for forty years. I honestly don't know what people are talking about when they complain about it. I have a blood test every now and then, the doctor adjusts my dose if necessary, and life goes on. I'm not and never have been overweight. If you keep an eye on it (and remember to take it), you shouldn't have any problems. If your father slowed down, it means his dose was not right, or perhaps he was attributing his problems to the thyroid problem when they came from something else (more likely the diabetes IME), or the depression associated with schizophrenia.

These days it is much easier to get control of all these conditions. It was much harder in the past. But with trial and error, medical assistance and treatment, family support, and a bit of education we can do it.
Can I suggest you read Think Like A Pancreas? That book helped me a lot.
Also, there is another useful website schizophrenia.com, like this one but for people with sz or bpd etc. It's very useful. It has a good Medications board. There's a lot of stuff on there about an amino acid called sarcosine, which people on APs find useful. It has helped my son quite a lot with motivation, concentration, organization, etc.


Sent from my iPhone using DCUK Forum mobile app
 
HI there and thankyou so much for this reply.

I'll tackle the quick stuff first because I think there was a misunderstanding. I'm not refusing more invasive thyroid treatment because what happened to my father. My psych is advising against it because of what happened to my father and my endocrinologist is also advising against it because it's not so bad and I'm still trailing different thing RE schizophrenia which she wants me on something more assured before we even looked into that and by her own words, she thinks I would have to be a lot worse than I am (she classed me with a warm sub-clinical thyroid adenoma; that I'm symptomatic of mild hyperthyroidism but it wasn't what she and others have classed as toxic yet) and my endocrinologist thinks that me managing hypothyroidism might be more difficult to manage as opposed to hyperthyroidism citing my dad as a worse case scenario. I just thought the doctors know way more about this then I and that's why I haven't gone for the radioactuve iodine yet.

She also calls me her favourite little nightmare, because I'm interesting but not simple to treat because of the antipsychs, and sees why she's the 5th endocrinologist I've had . I did give her a call and my apointment with her is still coming closer but I don't think she's going to change much on it, especially when my psych wants to review my meds now my positive symptoms are on the up again.

Also, I empathize with your son. Albify made me so apathetic that I stopped eating unless I was symptomatically hypoglycemic. Because I reacted that way, I actually lost a lot of weight until I was under a healthy range. I'm still on the lower end of healthy. in terms of weight.

Anyways, you are right about my routine, I've admitted that a couple of times on this thread, I might look into that amino acid you're on about and I'll talk to my doc about it. You're also right about the social support, the thing is that I grew up in a little country town called Forbes before I moved to Sydney for university so apart from my partner, family is 5 hours away for the most part.

The thign with the regular meals is that it kinda implies regular times and I can't guarantee that. Work isn't always compromising on rostering or breaks and that makes class sign-ups at uni a little inflexible. That's why when I did try really hard last time by my diebetic team to have a regular meal plan there were instances of me missing meals without even realising I've done it and because one of the parts of was cut down the grazing it stopped working really quick. So if I had that mean plan today, where I worked from 7-12 and rushed to a workshop at uni which goes from 12-15, I might not have had it in my train of though, which is pretty leaky sometimes, to make up for the fact I didn't have that allocated time but I wouldn't have grazed because that's a very 'all the time' thing that was apart of that plan, I would probably be well and truely hypoing now.

Anyways, I'll definitely look up the stuff you've suggested because it looks really useful. I could talk to my diabetic community nurse and my partner about trying a meal plan again after I get another basal test and get my idea of carbs resorted, though I suspect that they've both be having Nam flashbacks from how badly it went last time. I'm not sure how else to address the whole social support thing, the friends I have here don't really know much about what the implications of the health concerns are, only that I have needles when I eat, I don't weight much and that when I'm stressed I block my left ear.

But thanks alot @RuthW , you've given a new direction on it.
 
I know I'm really boring because I am more than your mother's age, I am sure, but really on those days when you have things squashed up against each other like that, you need a packed lunch! I think that idea is probably pretty horrifying to someone your age but it is the kind of thing that you can prepare in the morning or the night before (or your girlfriend can) and you wouldn't have to do it every day. Calendar on the fridge perhaps to remind you?

For me, I have got more and more assertive about this stuff as I have got older. I am much more likely to insist on my OWN meal times, on my OWN food and actually sometimes on NOT eating (when people are pushing me to eat with them). Frankly, with time, I have just learned that I feel much better when I do that. And I say it to people who are mucking up my routine. That includes my husband who is a regular night owl. We both freelance a lot so we can keep odd hours but I have started insisting that we don't because when I get up late my meal timings go out of the window and my blood sugars go crazy with them. I really need to have three meals a day with at least four hours between them. then I can sometimes have snacks in between, if I am running about a lot so my blood sugar drops. On stationary days, I don't snack.

You can go ten minutes late to class because you stopped to eat a sandwich and an apple. And you can explain that to your tutor and say why. They will see that you are not being lazy but responsible.

Another thing that works is to prepare a whole set of lunches in one go, and stick them in the freezer. Literally, I mean that you can actually make a set of ten sandwich packs on a Sunday evening, put them in sandwich bags and freeze them. You then grab one every time you have a rushed day. Since your timetable is irregular, half an hour's work on a Sunday can save you lots of trouble over a week or even two.

I don't know what kind of foods you eat at home, but a lot of bean dishes also freeze well and can be eaten cold for lunches. So I often freeze leftovers from meals like that. With bit of practice it gets really quick and easy. And the more you do it, the better you feel, the more energy you have, and so the easier it gets!

The obvious thing that I have found is that my mood is so much more stable and so much more cheerful when my blood sugar is stable. i remind myself of that when I am feeling like skipping lunch or something similar. With practice you get into a 'virtuous circle'. (I learned all this stuff because when I was a bit older than you I was a single parent and working, and sometimes studying, so I had to do it like this if I wasn't to collapse in a screaming heap of stress!)
 
@RuthW
Oddly enough, I actually did freeze and pack meals when I was on that meal plan, my brain just wasn't very good at it. Yeah, it wasn't an low access to food ergo time-hungry me couldn't get a meal, it was back to back things are happening so I just wouldn't remember I had a meal in my bag. It's kinda hard to accurately get across how hilariously I utterly failed at maintaining a meal plan.

However, like I said, we're having another go at it starting next week now I'm about to see my psych, diabetes nurse and endocrinologist all in the same day so I can discuss what changes we'll have to make if I have one. We're also going to try another meal plan again, though my psych considered if some of my cognitive symptoms would have contributed to the fact I prioritised other things infront of my meal plan or outright forgot and look into addressing those.

On the thing on explaining to my tutor why I'd be late: I get that and so do most university staff. It's my boss who is less forgiving. Like I said, he compared some of these issues to the way he manages his hay fever so he isn't really going to see me being late for a meal as acceptable nor has he been keen on being accommodating with rostering or breaks to help with this. I've been looking for a job at a different cafe on the side but on top of other things going on it's on a really slow burner.
 
Hi @Samael_Coughlan,

I'm sorry to hear about your issues - that's a whole load of stuff to deal with, and I really do feel for you. I hope that your appointments with your different healthcare professionals next week have a positive effect - I shall be thinking of you and hoping that all goes well. Do please keep us posted.

Can I share some of my own story?
To cut a very long story short, when I was 26 I was - eventually - diagnosed with Graves' Disease (hyperthyroid). I had been going to the doctor more than once a week for months, and was every time fobbed off with ' you're feeling so strange because your diabetes is out of control'. No efforts were made to think about why this might have been. Had it been picked up much, much sooner, it would have been so, so much easier.

But hey, I remained undiagnosed until I had such a level of thyrotoxicosis that I became psychotic. The latter, I was later told, was a direct result of the former. Carbimazole, which I was on for 2 months, made me hallucinate. The beta-blockers they put me on to calm my resting heart rate of 130bpm - that is not a typo - didn't agree with me. And then they put me on antidepressants.

That was May 2001. In the July I had radioiodine to inactivate my thyroid gland.

Also in July, I ended up in hospital due to a psychotic episode. I came out of hospital just before Christmas that year.

I suffered from an awful lot of non-joined-up thinking by an assortment of HCPs, although my erratic behaviour at the time would obviously not have helped them! I didn't know I was ill, but afterwards it was pointed out to me by everyone - everyone! - how worried they had been about me and they hadn't been able to understand what was going on in my head. Yeah, me neither. And thanks...!

It took me until 2006 to regain my independence, and have had two episodes of depression since, but not for years now.

I am on 200mcg levothyroxine daily, and that is perfect for me. I am tested every six months for the thyroid stuff and for the diabetic stuff. My diabetes control is excellent.

I hate that I went through all that, and put my family through all that. The memory of it all still affects me now. But in terms of my thyroid, and my psychiatric health, I am fit and I am well.

@Samael_Coughlan , I wish you all the very, very best - do keep letting us know how it's going.

Love Snapsy x
 

My teenagers half sister has had hyperthyroid for years and takes meds, from what I van remember, ,she has talked of the operation which is done in the darkest vaults of a hospital and you can't go near young children or pregnant women for days. There is also a chance of putting on weight too, she at the time didn't want the op, but that was a few years ago now.
 
I took a radio-iodine capsule as my treatment (it was in a lead container, and I wasn't allowed to touch the capsule with my fingers). I wasn't allowed near children for a while as a result, but that was okay as I don't have any.

The hospital department was the Department of Nuclear Medicine, which I thought ended tremendously exotic!

I did gain some weight but only until my daily dose of replacement thyroxine was tweaked to the right level.

 
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