So ill/ frustrated/ don't know what to do

[emilyj17]

Since November I've gotten very tight control over my type 1 diabetes (it was terrible before). But since before christmas I've been feeling pretty bad and it seems to be getting worse and worse.

I have zero appetite (its gradually been getting worse), I've lost over a stone in three weeks, constant nausea, my body keeps trying to make me sick but theres nothing in me to come up, I don't know what a good nights sleep is anymore, no energy, restless legs, cough ... you name it! Despite all this my sugar levels are still pretty much always in range.

When everything started I assumed it was stress as I'm a Masters student and had a bunch of essays due at the beginning of January, but thats long gone now and I'm feeling worse than ever.

I've been to the Drs twice now. The first time she was very dismissive but ordered some bloods. The second Dr was much more understanding. She thinks I've been feeling so bad as my hba1c has fallen quite dramatically (by more than 50%) - she said it was the quickest drop she'd ever seen. She thinks my body is in shock as a result. My bloods were all great other than being Vit D deficient - not anaemic or celiac.

That last appointment was a week ago, and I have another booked for a weeks time- incase I still feel bad (I really really do). She didn't give any indication for how long I might be feeling like this.

Basically, I'm at the end of my tether. I've stopped going to my classes and have fallen pretty far behind. I hate to be all "woe is me" but these last two months have been hell and I feel like I have no quality of life right now.

Should I be pushing the Drs for more tests? Relief? I just don't know

 

[noblehead]

Should I be pushing the Drs for more tests? Relief?

Yes that's what I would do, your symptoms are ongoing so you need to find an answer to your ailments.

 

[himtoo]

hey @emilyj17
your post is sounding like you should keep pestering your GP
you obviously don't feel right and your BG's seem to be behaving

do keep letting us know how you get on
xx

 

[azure]

@emilyj17 I agree you should speak to the doctor again. Even if there's nothing wrong and the HbA1C explanation or stress is correct, maybe they can prescribe some temporary anti-nausea pills that would help a little.

 

[Freema]

I asume you do eat healthy varied foods ... if not maybe she should chek your electrolytes if she haven´t done that yet.. you should not feel that bad for a longer period keep pushing for more excaminations

 

[ewelina]

Vit d deficiency gives some bad symptoms and it takes a wile to bring them up. What dose of vit d do you take? Did you have your tsh checked? Is it in the lower end of the range?

 

[tim2000s]

I'd echo @ewelina, are you taking anything to deal with the Vit D deficiency? That really can make you feel terrible. Otherwise, the only option is really to get more tests done.

 

[pavlovsdog]

It's really difficult when you feel so ill to keep on at GPs but I would keep going back, make sure you see the one who is more sympathetic. Also have you tried accessing student support at your college? They will be able to support you especially if you are falling behind with work. Your personal tutor should also be able to offer you a bit more support and allow extensions for coursework etc. Hope things pick up soon

 

[emilyj17]

Thanks all! I'll try and be seen at the Drs today

 

[emilyj17]

I'd echo @ewelina, are you taking anything to deal with the Vit D deficiency? That really can make you feel terrible. Otherwise, the only option is really to get more tests done.

@ewlina

Yes they've given me HuxD3- I've got to take two weekly for 8 weeks. I wonder if it is that! The Dr seemed to say that the Vit D shouldn't be making me feel so bad... but they have given my a high does - the standard instructions are to take one capsule every two weeks

 

[pavlovsdog]

@ewlina

Yes they've given me HuxD3- I've got to take two weekly for 8 weeks. I wonder if it is that! The Dr seemed to say that the Vit D shouldn't be making me feel so bad... but they have given my a high does - the standard instructions are to take one capsule every two weeks

I've been on vit d for about a year now. Originally I was prescribed massive doses (60k I.u. every three days for 10 weeks) but my GP forgot to continue prescribing a maintenance dose, therefore same problems arose the following year. I was again prescribed massive doses for several weeks and have been on a maintenance dose ever since. So - once you've completed your initial 8 weeks, make sure you are prescribed a maintenance dose! As an aside, vit d deficiency was suggested to me by a weight management specialist as low levels can cause weight gain and difficulties with weight loss, which can impact on diabetes control

 

[azure]

Thanks all! I'll try and be seen at the Drs today

Any update? I hope you were able to be seen.

 

[Magic172]

Since November I've gotten very tight control over my type 1 diabetes (it was terrible before). But since before christmas I've been feeling pretty bad and it seems to be getting worse and worse.

I have zero appetite (its gradually been getting worse), I've lost over a stone in three weeks, constant nausea, my body keeps trying to make me sick but theres nothing in me to come up, I don't know what a good nights sleep is anymore, no energy, restless legs, cough ... you name it! Despite all this my sugar levels are still pretty much always in range.

When everything started I assumed it was stress as I'm a Masters student and had a bunch of essays due at the beginning of January, but thats long gone now and I'm feeling worse than ever.

I've been to the Drs twice now. The first time she was very dismissive but ordered some bloods. The second Dr was much more understanding. She thinks I've been feeling so bad as my hba1c has fallen quite dramatically (by more than 50%) - she said it was the quickest drop she'd ever seen. She thinks my body is in shock as a result. My bloods were all great other than being Vit D deficient - not anaemic or celiac.

That last appointment was a week ago, and I have another booked for a weeks time- incase I still feel bad (I really really do). She didn't give any indication for how long I might be feeling like this.

Basically, I'm at the end of my tether. I've stopped going to my classes and have fallen pretty far behind. I hate to be all "woe is me" but these last two months have been hell and I feel like I have no quality of life right now.

Should I be pushing the Drs for more tests? Relief? I just don't know

Ensure you get your thyroid tested you may have an overactive one which has symptoms you describe

 

[emilyj17]

Any update? I hope you were able to be seen.

Sorry I haven't been back to update!

Its been another couple of weeks of going back and forth from the GP with health really deteriorating and ended up in A&E on Sunday -I was very dehydrated and my heart rate was at 143!
Lot's of fluids pumped into me & anti-sickness prescribed which has made me feel better for now, but still no diagnosis as whatever is wrong isn't obvious.
I've been referred Gastro so hopefully am now on to the right track and the mystery can be solved soon!

Thanks for your concern everyone!

 

[azure]

I hope you get an answer very soon @emilyj17

Look after yourself. X

 

[donnellysdogs]

Good. I am glad you will be seen by a gastro person.
I would look up Gastroparesis to see if any of your symptoms are similar to this.... diabetics can get this... but GPs rarely know about it. Gastro's dont know a lot about the illness either to ne honest but they will hopefully get your stomach and innards checked out.

Dont worry or fret, as the chances of it are actually very small... and there are numerous other things that could cause your symptoms.

I had chronic nause for a year.... it was a tablet I was on. My gastro chap and no other medical person thought of this tablet giving me such awful nausea... it wasnt until I stopped the tablet and within 2 days the nausea went totally.

I would recommend you listing foods that you eat on a daily basis to take with you. Be prepared to talk about bowel movements and be totally honest about previous control and current with gastro chap.

My gastro chap has helped me so much and so has my diabetic consultant.

I hope you can get some answers...

 

[Notorious]

Since November I've gotten very tight control over my type 1 diabetes (it was terrible before). But since before christmas I've been feeling pretty bad and it seems to be getting worse and worse.

I have zero appetite (its gradually been getting worse), I've lost over a stone in three weeks, constant nausea, my body keeps trying to make me sick but theres nothing in me to come up, I don't know what a good nights sleep is anymore, no energy, restless legs, cough ... you name it! Despite all this my sugar levels are still pretty much always in range.

When everything started I assumed it was stress as I'm a Masters student and had a bunch of essays due at the beginning of January, but thats long gone now and I'm feeling worse than ever.

I've been to the Drs twice now. The first time she was very dismissive but ordered some bloods. The second Dr was much more understanding. She thinks I've been feeling so bad as my hba1c has fallen quite dramatically (by more than 50%) - she said it was the quickest drop she'd ever seen. She thinks my body is in shock as a result. My bloods were all great other than being Vit D deficient - not anaemic or celiac.

That last appointment was a week ago, and I have another booked for a weeks time- incase I still feel bad (I really really do). She didn't give any indication for how long I might be feeling like this.

Basically, I'm at the end of my tether. I've stopped going to my classes and have fallen pretty far behind. I hate to be all "woe is me" but these last two months have been hell and I feel like I have no quality of life right now.

Should I be pushing the Drs for more tests? Relief? I just don't know

I hope the drs can help you and you're feeling better soon. I just wondered though, is there any chance of pregnancy?

 

[Okulu]

Hello.
Sorry to butt in here, but just read your post... you REALLY need to be checked for Addison's disease ASAP if you haven't already been tested. This isn't a "standard" test that your GP would do, but your symptoms are highly suggestive of this...have a Google and see what you think. (Testing involves a test for cortisol in the blood at 8-9am, and then if this is low, you will need a Synacthan test to see if your body naturally produces it when stimulated to do so).
Happy to answer any questions but didn't want to bombard you with too much info all at once!
Best of luck and keep in touch

 

[ccassidy539635]

I know it has been a while since this was posted but this is me!! About 8 weeks I seriously tightened by control getting my hba1c down from 14.1% to 7%. Over this time I have been getting worse and worse. It began with restless legs at night leading to not sleeping. I began to lose my appetite and felt sick constantly. My legs are constantly tense and restless and cannot seem to relax. This really brought my mood down and began to feel very anxious (cold, shivery and nervous). About 2 weeks ago I was up all night vomiting (nothing was coming up as I had nothing inside of me but yet I was still wretching). I went to A&E to be on the safe side as I could not get any fluids or food down and did not want to end up with ketones or in DKA. Since then I have hardly eaten anything as I cannot get any food down due to constant nausea and non exist an appetite. My legs are still playing up and sleep is a thing of the past. I have lost nearly a stone in weight so I am having to force down meal replacements. I also have been suffering with diarrhoea/lose stools. I am trying to remain positive but struggling. However thanks to my GP things are looking slightly positive as he believes my rapid drop in A1c has caused me to develop insulin neuritis or treatment induced neuropathy. I am due to see my diabetic specialist on Thursday who will hopefully have more answers. I have had losts of blood done and so far they are all ok. I have had more taken today and have been checked for Addison's disease. I have also done a 24hour urine collection and stool sample. If I could get a decent nights sleep, able to relax my legs and get my appetite back to get in some nutrition it would make all the difference! I'm hoping this is just temporary whilst my body adjusts to the rapid drop but these past 8 weeks feel like it has been a lifetime.

 

[ccassidy539635]

@emilyj17