The Neverending Hypo

[AlisonM]

Sigh. I'm back to having hypos again after a nice two week holiday and last night was a true nightmare. After the tattie and bean pie yesterday my BGs shot up to a whacking great 4.7 and then fell again to 3.4. That's how it went all night, I couldn't get them to stay above 4 for very long. I had jelly beans, coke, hot chocolate, cheese on toast, grapes and a banana toasty with white bread between 4pm and 5am (in addition to my tea of mushroom ravioli with cheese sauce). I didn't want to eat but couldn't think of any other way to deal with the BGs. I've had almost no sleep and am currently sitting at a very uneasy 5.3 feeling deathly tired. My lowest score was 2.9.

I've got a call in for a telephone appointment with the DSN and the doctor, I'll see who gets to me first. I'm doing my best here but it seems nothing works for long and it's really getting me down. The worst of it is the professionals don't seem to know what to do with me either.

 

[Northerner]

Goodness, I'm sorry to hear this Alison I know how just a couple of hypos can be so draining, so to suffer hours fighting lows - well, I can only imagine how terrible you must be feeling. I hope the ones-who-should-know can come up with something. Sounds like the meds might have resurrected some activity in your pancreas and they've joined forces to drive you down. Hope you feel better soon! 🙂

 

[AJLang]

Hi Alison I have every sympathy for you. I've had two hypos recently that have taken me nearly 2 hours to get to near normal and that was bad enough. Your long night of this must have been awful. I hope that you are able to get some answers that will help.

 

[Pumper_Sue]

Hi Alison,
sorry to hear of your problems
Have you been checked for Addison's disease? If not might be worth asking about it.
Hope you are soon sorted for the better.

 

[AlisonM]

Hi Alison,
sorry to hear of your problems
Have you been checked for Addison's disease? If not might be worth asking about it.
Hope you are soon sorted for the better.

Yup. I've had Addison's for the past 15 years, long before the Big D showed up. In fact I was regularly tested for diabetes and always came up negative. When it did show up it took every one by surprise as the symptoms came on really fast and hard.

 

[Pumper_Sue]

Yup. I've had Addison's for the past 15 years, long before the Big D showed up. In fact I was regularly tested for diabetes and always came up negative. When it did show up it took every one by surprise as the symptoms came on really fast and hard.

Oh wow a fellow addisonian
So next question would be are you sure you are absorbing your steroids ok?
I found I just could not cope using just HC so use Pred and HC plus florinef.
If you are on insulin ask for a pump as well. I found it was the only way to keep control once I developed addison's.

 

[AlisonM]

No pump or insulin yet and I'm on three monthly Cortisone injections for the Rheumatics, just had the first ones a week ago. They're hoping that'll be enough for the Addison's as well but will top me up with pills if necessary. I'll mention it to the doc when I see her tomorrow though.

We're in good company, JFK and Jane Austen both had it, oh and so did Bin Laden apparently.

 

[Pumper_Sue]

No pump or insulin yet and I'm on three monthly Cortisone injections for the Rheumatics, just had the first ones a week ago. They're hoping that'll be enough for the Addison's as well but will top me up with pills if necessary. I'll mention it to the doc when I see her tomorrow though.

We're in good company, JFK and Jane Austen both had it, oh and so did Bin Laden apparently.

I would be very worried if taken off oral meds for addison's 😱 I suspect you would be able to reduce them a bit but not stop taking them.
But if you are having never ending hypo's like that then I would guess at lack of steroid.
Do you have an emergency steroid injection kit plus someone who knows how to inject you if things go down hill rapidly?

I knew about JFK and Jane Austen but not Bin Laden, had heard he had diabetes though.

 

[AlisonM]

The problem is, I had a huge combination of meds (18 pills a day at one time) and horrendous side effects to cope with so all my 'ologists got together to work out a regime that they hope will help me while not leaving me contemplating suicide because I'm so miserable. I'm being closely monitored with frequent blood tests and if there's any doubt about the injections being enough on their own then I'll be topped up with pills. The ACTH test was quite good when it was last done in May, which is why they were willing to try this.

 

[AlisonM]

Well, it wasn't the Addison's, it may have been Aunty who showed up with a bang on Friday - anyone ever hear of hypos being caused by the monthlies or the menopause? Basically, the experts are baffled and we're all scratching our heads. BGs are still on the low side but no hypos since yesterday.

I ended up in floods of tears on Wednesday and got driven home. Thursday was more of the same enlivened by a trip to the surgery and then the hospital for another ACTH test (almost identical to the last one). I'm currently testing every hour on the hour, not because I have to but because I'm paranoid about hypos creeping up on me unawares.

 

[Pumper_Sue]

Well, it wasn't the Addison's, it may have been Aunty who showed up with a bang on Friday - anyone ever hear of hypos being caused by the monthlies or the menopause? Basically, the experts are baffled and we're all scratching our heads. BGs are still on the low side but no hypos since yesterday.

I ended up in floods of tears on Wednesday and got driven home. Thursday was more of the same enlivened by a trip to the surgery and then the hospital for another ACTH test (almost identical to the last one). I'm currently testing every hour on the hour, not because I have to but because I'm paranoid about hypos creeping up on me unawares.

I find it odd that they are doing ACTH test on you as they are a waste of time if you are established on steroids and esp if you have had injections in your joints.
You obviously have your normal supply of steroids at home with you, so have you actually taken any extra to see if this stops the hypo?

 

[rachelha]

Alison, ouch, that is really not good. Glad to hear your levels are a bit better now. I would be testing every hour too. Do you still get hypo symptoms ok?

 

[AlisonM]

Do you still get hypo symptoms ok?

Sometimes, but not always. If I've been low for a while they seem to wear off until I get dangerously low, by which time of course, it's too late.

Sue, no. I've only had the injections a couple of weeks ago, haven't been taking the pills for a while now as that was one of the meds I was taken off with all the others ahead of the big 'ology' conference that was supposed to give me a meds regime which would give me some quality of life while 'managing' all these flipping conditions, syndromes and diseases. All it seems to have given me so far is a new set of problems.

One suggestion was that either the pain, or the painkillers could be driving me down. Or it could be Aunty or the menopause as I already said. There are so many possible culprits.

See me, I never do anything the eays way!

 

[Pumper_Sue]

Sometimes, but not always. If I've been low for a while they seem to wear off until I get dangerously low, by which time of course, it's too late.

Sue, no. I've only had the injections a couple of weeks ago, haven't been taking the pills for a while now as that was one of the meds I was taken off with all the others ahead of the big 'ology' conference that was supposed to give me a meds regime which would give me some quality of life while 'managing' all these flipping conditions, syndromes and diseases. All it seems to have given me so far is a new set of problems.

One suggestion was that either the pain, or the painkillers could be driving me down. Or it could be Aunty or the menopause as I already said. There are so many possible culprits.

See me, I never do anything the eays way!

If you have been taken off of your steroids then you have not got addison's disease.
If you had addison's then your consultant would be facing a murder charge 😱
When on steroids for a while you need to be weaned off of them very slowly. If you do not wean slowly then you can end up in crisis. Which untreated is fatal.
How much steroid were you on and how long for and how did you stop taking them, ie, was it a sudden stop or over a few days?

 

[AlisonM]

I was always on a relatively low dose of HC and, it was a slow stop over a period of two weeks and, I was carefully monitored in between times and seem to be doing 'relatively' OK. I notice from a confirmation email that HC has been added to my prescription which I will collect on Wednesday so someone has obviously decided to be safe rather than sorry.

There has been some debate (for almost 15 years now) as to whether I have Addison's or merely an "Adrenal Insufficiency", but the last round of tests seemed to confirm it is Addison's. They're honestly not playing Russian Roulette with my life here but trying to find some way to help me manage things better while keeping the side effects to a minimum. That's one reason I was so pleased when they had the case conference, it meant they were looking at everything and not just treating each problem separately as if each one belonged to a different patient.

Part of the problem, it seems to me, is that symptoms of one condition may either exacerbate or mask the symptoms of another (or both). Add to that the side-effects from all the medications, soe of which were absolutely horrendous, and my life has been hell ever since the Diabetes took hold. Before that it was difficult but bearable. Since then the Rheumatics have got so much worse, as have all the other problems I have and it really gets me down. The Big D has really messed everything up.

 

[Pumper_Sue]

I was always on a relatively low dose of HC and, it was a slow stop over a period of two weeks and, I was carefully monitored in between times and seem to be doing 'relatively' OK. I notice from a confirmation email that HC has been added to my prescription which I will collect on Wednesday so someone has obviously decided to be safe rather than sorry.
If you have been on steroids for 15 years then you have adrenal glands that are now more than defunct. The tapper should be carried out over pos a year to hope your adrenals wake up. I am just shocked at what you are telling me.
There has been some debate (for almost 15 years now) as to whether I have Addison's or merely an "Adrenal Insufficiency", but the last round of tests seemed to confirm it is Addison's. They're honestly not playing Russian Roulette with my life here but trying to find some way to help me manage things better while keeping the side effects to a minimum. That's one reason I was so pleased when they had the case conference, it meant they were looking at everything and not just treating each problem separately as if each one belonged to a different patient.
If you have addison's you can not come off of steroids ever. They are what is keeping you alive. Surely you had all the correct tests done before put on steroids? All the symptons you have posted point to a lack of cortisol which will fairly soon cause you to go into a crisis which I have stated before is life threatening.( I know been there worn the T shirt. I came within 20 mins of death)
Part of the problem, it seems to me, is that symptoms of one condition may either exacerbate or mask the symptoms of another (or both). Add to that the side-effects from all the medications, soe of which were absolutely horrendous, and my life has been hell ever since the Diabetes took hold. Before that it was difficult but bearable. Since then the Rheumatics have got so much worse, as have all the other problems I have and it really gets me down. The Big D has really messed everything up.

I'm the other way around diabetes was a doodle untill Addison's came along. Controling the both is rather time consuming I would rather have diabetes than addison's any day

 

[Catwoman76]

Sigh. I'm back to having hypos again after a nice two week holiday and last night was a true nightmare. After the tattie and bean pie yesterday my BGs shot up to a whacking great 4.7 and then fell again to 3.4. That's how it went all night, I couldn't get them to stay above 4 for very long. I had jelly beans, coke, hot chocolate, cheese on toast, grapes and a banana toasty with white bread between 4pm and 5am (in addition to my tea of mushroom ravioli with cheese sauce). I didn't want to eat but couldn't think of any other way to deal with the BGs. I've had almost no sleep and am currently sitting at a very uneasy 5.3 feeling deathly tired. My lowest score was 2.9.

I've got a call in for a telephone appointment with the DSN and the doctor, I'll see who gets to me first. I'm doing my best here but it seems nothing works for long and it's really getting me down. The worst of it is the professionals don't seem to know what to do with me either.

Sorry to hear of your horrible hypo's ,I hope you are feeling a bit better now and things start to pick up for you. Take care Sheena x

 

[AlisonM]

Yee Hah!!!!! I woke this morning to a whacking great high of 6.0. That's the highest I've been in the am since this latest outbreak of hypos started. Plus, only one minor hypo yesterday. What's the betting a couple of days from now I'll be moaning cos I'm too high?

 

[Northerner]

Yee Hah!!!!! I woke this morning to a whacking great high of 6.0. That's the highest I've been in the am since this latest outbreak of hypos started. Plus, only one minor hypo yesterday. What's the betting a couple of days from now I'll be moaning cos I'm too high?

Very pleased to hear this Alison 🙂 I hope you get some stability to your levels for the forseeable future 🙂