Hi from new mum with eye issues and addisons!

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Lott1985

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Type 1
Hi all,

I've been looking through posts for ages so thought I should say hello!

I'm charlotte, type 1 diabetic once age of 7 and am 27 now, lots of good control and some not so good from uni days etc!

I've had an eventful year this year as I had my first baby.my hba1c was shocking - 12% (baby not planned) so obviously I was terrified from word go with baby and got my levels down to 6% then 5% within a very very short time! Unfortunately this accelerated my background retinopathy to proliferative and I was without sight weeks after baby was born. Thankfully I've had a vitrectomy to save my eyes in the left and a hell of laser in the right! Fingers crossed it stabilises. Does anyone have much experience of this situation?

The eyes were also worsened by constant vomiting which after weeks of not being able to move as I was so weak turned out to be adrenal insufficiency or addisons!

Not all doom and gloom as my baby was born 7lbs 11oz (I was weirdly proud he wasn't too big) and born perfectly healthy.

Anyway just wanted to say hi as I'm just a snooper normally! Xx
 
Welcome aboard and congratulations on having your new baby, hope your health is settling down, and your Energy levels have increased especially looking after a new baby 🙂
 
Hi Lott1985, welcome to the forum 🙂 Congratulations on the birth of your baby! 🙂

We do have members here who have experience of what you describe, so hopefully they will be along to share their experiences/
 
Thank you 🙂 im getting there and even had my dvla test today so hopefully ill pass! Just wish the macular oedma would bugger off now!
 
Hi Charlotte and welcome 🙂

Congratulations on your new baby 🙂. Sorry about your eye problems, I understand it is a common problem in pregnancy and also when there is a sudden drastic reduction in Hba1c. But the good things are that you've had sight-saving treatment, and also now you've had the best possible reason to tighten up your diabetes control, you know you can do it, and the future is looking good! 🙂
 
Hi Charlotte,

Congrats and a warm welcome to the forum
 
Hello Charlotte and a big welcome to the forum. Many congratulation on the birth of your son as well, hopefully with good control your sight will now settle down and be fine.
I've been type 1 for 49 years now and also have Addison's for an added bonus 🙄
Hope you passed your dvla test ok as well.
 
Hi Charlotte, many congratulations on the birth of your baby. You have had a lot to deal with.

I have had a lot of trouble with proliferative retinopathy. I have had vitrectomies in both eyes and maximum laser. My left eye was too damaged to save my sight but like you a rapid tightening of control and reduction in HbA1c increased the speed of vessel growth in my right eye along with a cataract and oedema. Definitely between a rock and a hard place knowing what to do for the best and that was without being pregnant. It did eventually stabilise and I really hope your situation calms down too. Good luck with it all.
 
Thank you everyone - sue, how long have you had ad for?
flower its so awful isn't it. Hw long did it take your oedma to clear? I've had it for about 9 months now and its frustrating isnt it. The hardest thing to go through I think, well done on getting through it 🙂

Is there an eye forum on this site?x
 
Lott1985 said:
Is there an eye forum on this site?x
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No - the problem with splitting the site into too many specific sections is that people can 1) sometimes be unsure where to post if it doesn't fit exactly or involves more than one issue, and 2) not as many people might see the posts unless they specifically choose to look in a section, so you may not get as many replies.

For those reasons we have found it better to limit the number of specialist sections and encourage people to post in the General section if unsure 🙂
 
Ok great, I can moan about my eyes anywhere then 🙂 just didnt want to harp on about them in the wrong section!
 
Lott1985 said:
Thank you everyone - sue, how long have you had ad for?
flower its so awful isn't it. Hw long did it take your oedma to clear? I've had it for about 9 months now and its frustrating isnt it. The hardest thing to go through I think, well done on getting through it 🙂

Is there an eye forum on this site?x
Click to expand...

Hiya Lott. I've had Addison's since 2002 🙂
 
The macular oedema probably took about 18 months to settle until I started to be able to see some detail through my right eye. It is beyond frustrating trying to see through/round it especially with the loss of peripheral vision as well. The main problem I have from the oedema is scarring on my retina, nothing looks vertical, everything from lamp posts, door frames etc have obvious kinks in them. The day I started being able to see some focused detail and gradually be able to read again was just brilliant. I know you have absolutely no choice in the matter but stick with it. I wish you all the best.
 
Thanks flower, they think its going down but you know what it's like! I always feel like I'm underwater or something. I still have bits of blood clearing in my right eye too so can't wait for that to be absorbed, makes me feel a bit sea sick! Sue, do you have a pattern with regards to symptoms? I feel like I have good days and bad days but not always sure why (meds the same, not ill etc) ive only been dx for 5 months so hopefully it will get better! X
 
Hi Charlotte

welcome to the forum

I'm a Diabetic for 26 years now and I have many problems with my eyes .

Both eyes vitrectomy , tons of laser , macular oedema in my good eye and now glaucoma in my bad eye .
It sounds all very fightening and I visit my doc every 3 months .
But it is all stable now and the future looks fine .

I turned it all around by changing my diet to Low carb high fat . That helped me to control my BG and my Hba1c . It stopped my ups and downs and even my cholesterol is so good now that I dont need statins anymore.

Wish you all the best with your test and of cause
congratulation on the birth of your baby.
By the way my Hba1c was 12 % after the birth of my second child but this was over 30 years ago .
 
Lott1985 said:
Sue, do you have a pattern with regards to symptoms? I feel like I have good days and bad days but not always sure why (meds the same, not ill etc) ive only been dx for 5 months so hopefully it will get better! X
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Hi Charlotte, I did have quite a few ups and downs to start with. My biggest problem using HC. I found I metabolised it very quickly so I ran out of energy. Problem solved by using Prednisolone and HC plus my Florinef.
I'm assuming either you or your consultant is keeping an eye on your BP. Low BP can make you feel really unwell as an added bonus.
Do you have an emergency steroid injection kit and have you and your partner been shown how to use it?
Here's a link http://www.addisons.org.uk/comms/adshg/page2.html for the Addison's owners manual. If you have a look around the site there are some very good pdf files regarding surgery/emergency treatment etc. Do you have a steroid card to carry with you at all times? If not get one from your pharmacist.
 
Thanks Gabriel its good to hear ur eyes are stable now, I've started to do low carb diet and I can already see such an improvement like you say t gets rid of the spikes doesn't it! I've lost a bit of weight with it too (always a bonus) I've been reading dr Bernstein book which includes recipes - cauliflower and broccoli have become my staples!

Are there any vitamins I shoud take for my eyes do you think?

Sue, thanks for all those tips. I've got my injection kit and card and printed off my nw instructions from the adshg site - it's ugh a great site isn't it! My gp hasn't or a clue o its been great to print stuff from there! I'm going to ask my endo about prednisone (sp) is that the sae as plenadren? My bp is still not right not as drastic as it has been but I do still black out every now and then - hopefully this will improve!x
 
Lott1985 said:
Sue, thanks for all those tips. I've got my injection kit and card and printed off my nw instructions from the adshg site - it's ugh a great site isn't it! My gp hasn't or a clue o its been great to print stuff from there! I'm going to ask my endo about prednisone (sp) is that the sae as plenadren? My bp is still not right not as drastic as it has been but I do still black out every now and then - hopefully this will improve!x
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Hi Charlotte, very few GP's would have an in-depth knowledge of Addison's as only about 1 in 100,000 people have it, so very few GP's would ever see a case.

From reading about Plenadren, it's a new drug as in a slow release Hydrocortisone and only taken once a day. It sounds very good so stick with it. Prednisolone is a different type of steroid.
For low BP you need Florinef (Fludrocotisone)
 
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