Author Topic: Everything going wrong/EYES LOOK WEIRD  (Read 3915 times)

mollie carey

  • Full Member
  • ***
  • Posts: 225
Everything going wrong/EYES LOOK WEIRD
« on: October 23, 2013, 12:04:05 PM »
I am really struggling. Went into a bad flare of my sjogrens/lupus with sudden menopause 2 months ago.  I have lost weight, so they are looking for any chance of lymphoma, so far no swollen nodes, and ultrasound of stomach not back.  Having blood sugar issues, likely from prednisone, so monitoring blood sugars now, thyroid has gotten too high, I also have hashimotos, on lots of thyroid med, has a weird test with my heart, a lp pla2 which was very high, an indicator of plaque and risk of heart attack and stroke, just saw cariodologist, who order carotid ultrasound, stress test and echo and said he was more concerned with high cholesterol, even though my good cholesterol was very high, so ratio was normal, LDL 159, HDL 100, ratio 3. something.  Still having issues trying to tolerate the plaquenil, keep getting a bad headache 9-10 days into it, and then I back off for 4-5 days until headache is gone and start again.  I am having some good days and then horrid days and weight is 106 at 5 7, so I look terrible.    The newest weird thing is that my eyes look very weird, they are very dry, but look like sunken or have big bags, just not like me, doc said could be sjogrens or from slightly high thyroid. I finally see the rheum on this Friday, I feel like I was to lose it,,,,, I just need hope, I feel overwhelmed by all this new stuff going on.  On top of it I do sub IVIG and my trough levels where below normal, so  now I am seeing immunologist to see if I need to go back to iv's or up does, plus my white count keeps dropping, which happenened when I flared badly after giving birth, but trying to make sense of all these things is exhausting....
« Last Edit: October 23, 2013, 12:06:14 PM by mollie carey »

aussie mum

  • Hero Member
  • *****
  • Posts: 604
Re: Everything going wrong/EYES LOOK WEIRD
« Reply #1 on: October 23, 2013, 01:00:40 PM »
Dear Mollie,

You are going through a real rough patch at the moment. I totally understand how overwhelming multiple health issues can be. While I can't give you any medical specific advice, I just want to offer you moral support and encourage you to be kind to yourself and not try to overdo things. The doctors appear to be working through your issues and they'll come up with a plan to help you feel better.

You're not alone with having problems with Plaquenil. My daughter has never been able to tolerate it, having bad problems with Nausea and Headaches. Others on this forum have had success by spliting the dose or weaning themselves slowly on to plaq, taking about a month or so to build up to the full dose.

While you're at the Rheumy on Fri, it might be worth asking if they can do a full test of your Thyroid function (not just the TSH) to see exactly what's going.

Good luck. I hope you are feeling better soon.
Aussie Mum.
« Last Edit: October 23, 2013, 02:12:33 PM by aussie mum »
Daughter - SJS, Lupus, Underactive Thyroid, Wolff Parkinson White Syndrome & Insulin Resistance.

Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D

Carolina

  • Hero Member
  • *****
  • Posts: 5753
  • —if it ain't one thing, it's another." Roseanne R.
Re: Everything going wrong/EYES LOOK WEIRD
« Reply #2 on: October 23, 2013, 01:10:16 PM »
I'm so sorry Mollie.  I hope you have some relief and recovery!

When I'm in a flare my eyes almost disappear.  They are red, really red, and sunken in puffed up pouches.  Even my bags have little bags.

It is the inflammation of course.

I'm at day 15 since the last of the infusions that caused my horrible flare that lasted 10 days, and beginning to feel normal again (well, you know, the new normal for me, whichever one that is).  That is my subcutaneous infusion of Hizentra, which is being switched to Gammagard whenever it is cleared by the insurance company.

I know the 'trying to make sense of all of this is exhausting' feeling.  It is best to give up for a while.  Sense doesn't seem to enter in, not even for the best trained scientists.  Of course there's some sort of order or method behind what is going on.  But try to relax and accept that for the moment it IS what it IS, and you must let it be a while.

I'm trying to do that right now.  Hey, whatever is going on, just accept it, care for my poor body, and love myself.

It ain't easy.

Hugs, Elaine



Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

quietdynamics

  • Hero Member
  • *****
  • Posts: 2399
Re: Everything going wrong/EYES LOOK WEIRD
« Reply #3 on: October 23, 2013, 02:57:00 PM »
Mollie, just posting to lend support.
Just managing the all the Drs/appts/tests would be exhausting enough...
I hope they come up with answers.

Are your electrolytes off as well from dehydration? Sunken eyes, bags (edema),headaches? even if you drink water they can be off and you will feel thirsty...dry, unwell.
http://www.winona.edu/biology/adam_ip/misc/assignmentfiles/fluidsandelectrolytes/Electrolyte_Homeostasis.pdf
Could be one small thing that may help you fell a bit better...I have to sip a Gatorade type drink every so often, even though I drink water all day. Sometimes I make my own, easy to do.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

mollie carey

  • Full Member
  • ***
  • Posts: 225
Re: Everything going wrong/EYES LOOK WEIRD
« Reply #4 on: October 23, 2013, 03:04:00 PM »
thanks ladies,

so you think dehydration could cause the eye thing? I am probably dehydrated.  Elaine when you say in a flare your eye disappear, so others notice? Like I look exhausted, it is weird and when I saw you said your eyes disappear I thought this is kinda how they look, sunken with big bags.

all the docs are getting to be a bit much, along with all the testing, but I hope and pry they will figure out a plan so I can get some kind of normal back.
 I just found this article talking about sjogrens effects on eyes, and it list swollen eyes, and I think that is part of this eye thing, first they were just dry, now they look strange, maybe puffy under?? I was at daughters senior soccer night and when I took my sunglasses off my eyes were like irritated by the breeze and even felt more gritty like I needed the glasses on, I did not ever have this before, so the eye thing for me is new, even though I was dx at 30, so 19 years ago.

http://www.medicalnewstoday.com/articles/233747.php
« Last Edit: October 23, 2013, 03:08:52 PM by mollie carey »

Scottietottie

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 9174
Re: Everything going wrong/EYES LOOK WEIRD
« Reply #5 on: October 24, 2013, 12:02:57 AM »
Hi Mollie  :)

You have a lot going on. Do you see an endocrinologist? If you can get your thyroid levels under control I am sure that you can feel a whole lot better than you do now.

I have always felt at my illest when my thyroid is out of whack. More brain fog, more pain, more fatigue and worst of all - black depression which makes everything seem worse.

My thyroid meds seem to need to be readjuusted every six months or so but things feel so much better if the numbers are within range. In fact, I feel better when my TSH is on the supressed side.

Do get your docs to try and get it running right.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

Dee

  • Guest
Re: Everything going wrong/EYES LOOK WEIRD
« Reply #6 on: October 24, 2013, 08:13:34 AM »
Hi mollie

I have peri orbital swelling when I flare, when hashis acts up and also when my eyes get drier than usual which happens every once in a while when I do not keep up with my drops or due to dry weather, ceiling fans or air conditioning.

Are you using any eye drops?  The OTC drops for dry eye may bring you some relief and worth a try if you do not already use them.

You are juggling quite a bit right now, hope it eases up you're feeling better soon.

Dee




BKreader

  • Full Member
  • ***
  • Posts: 181
Re: Everything going wrong/EYES LOOK WEIRD
« Reply #7 on: October 24, 2013, 08:40:24 AM »
Hi Mollie,

If it makes you feel any better my eyes swell too. The lids swell and my left eye droops. The swelling really can impact my whole left side. My under eye areas gets very dark and sunken. I looks rather scary and people do notice. If my parotids join the act, I don't even look like myself.

I know how challenging it can be juggling all those doctors appointments. I have 3 young kids so I always have to arrange child care. I hate asking everyone ALL THE TIME for babysitting favors and then being too sick to return the favor. Even family isn't always understanding. I also struggle with balancing the thoughts that really I hope they never find anything and that I get "the all clear" yet, I get frustrated that they don't and can't fix me.

I had a hard time with the generic Plaquenil, but I am doing WAY better wth the name brand. I find this really has helped with my facial swelling.

I agree with Scottie with her Thyroid comment. I am not sure what tests have been done but I know that if it it is not properly dialed in can can play havoc with the rest of you body's systems. I felt better after I started Liothyronine as a T3 supplement 2x a day. I have Hashi's and get checked every 6-8 weeks.

My thoughts are with you. Feel better.
Primary Lupus, secondary atypical Sjogren's, Recurring episcleritis, Esophageal spasms, Hashimoto's, GERD, Perioral Dermatitis
Levothyroxine, Liothyronine Sodium, Plaquinil, Prilosec
Salmon oil, Flax oil, Restasis, Tears Naturale

connie50

  • Guest
Re: Everything going wrong/EYES LOOK WEIRD
« Reply #8 on: October 24, 2013, 08:40:46 AM »
Hi Mollie,

So sorry you have so much going on right now.

I have been thinking lately that I don't look right, not like myself.  Like you, my eyes seem slightly sunken, baggier then normal and my face slightly puffy.  My cheeks seem puffier and I am going through another round
of biting the insides of my cheeks, ouch.

The last time I noticed myself looking like this was when I had a terrible intestinal upset and was definitely dehydrated at that time, so I'm going with that for me now and increasing my fluid intake to see if that helps.

I coincidentally have a thyroid ultrasound mid Nov. to see if nodules have changed or if their is any increase in thyroid enlargement.

It's bad enough when we feel bad but when we feel like we look bad that adds another ugly dimension.  Luckily the people around me have been kind enough not to mention my looking extra tired and I appreciate it...

Hope you feel better soon.

Connie

mollie carey

  • Full Member
  • ***
  • Posts: 225
Re: Everything going wrong/EYES LOOK WEIRD
« Reply #9 on: October 24, 2013, 09:40:26 AM »
I do have an endocrinologist, I am on a lot of meds for my hashimotos, so much so that my free t was a bit over the end range and my free t4 is on the end of high at 1.7, my tsh is .001 and has been for years, so they do not even use that to measure, they think my prednisone and large dose of thyroid have suppressed it.

I am seeing the rheumatologist tomorrow and am asking about eye drops, and salivary meds.

Thanks so much to all of you for responding, I so appreciate your kind words and sharing of experiences.  At least I know others have issues with their eyes looking bad.   It is upsetting when people notice.  And my weight is bothered me, I think if I could gain some I would feel better, and I will work on staying hydrated.

thanks so very much

Ripvanann

  • Hero Member
  • *****
  • Posts: 887
  • "A DESIRE FULFILLED IS A TREE OF LIFE"
Re: Everything going wrong/EYES LOOK WEIRD
« Reply #10 on: October 24, 2013, 10:49:14 AM »
Hi Mollie,

I'm very sorry you're feeling so rough. I'm new to the thyroiditis thing, so this may be way off, but doesn't the thyroid eventually go hypo after a certain amount of time? As in it changes a lot? Hashi means you have AI thyroiditis? I guess I should just spit it out, it's just with your being so thin and then when you said your eyes look "weird" I thought perhaps it might be Graves.

You said they're sunken though? I'm picturing that perhaps your sockets look deeper because your eyeballs are perhaps bulging? Again, I might be talking nonsense, but describing your eyes as "weird" rather than puffy or dark, etc.are me think Graves because this is how I've heard the eyes described in Graves.

Hope you feel better soon.
~Andrea
Primary SjS, Steroid Induced Cushing's Syndrome, RA, Thyroiditis, Hyperparathyroidism, Raynaud's, Autonomic & Small Fiber NLeuropathy, Fibro. Osteoporosis, & other fun stuff associated w/ the afore mentioned. ~Meds: prednisone, Plaqu, Citracal D & Pain Meds, Compazine, phenergan, Iberogast.

mollie carey

  • Full Member
  • ***
  • Posts: 225
Re: Everything going wrong/EYES LOOK WEIRD
« Reply #11 on: October 24, 2013, 01:29:57 PM »
yes, I think it could be that my thyroid is high, although it was just a bit high and it has been much higher before. my eyes are totally dry, lacking lubrication, I mean I can see it, so can my family, not sure if this would cause them to become tired/ I read swollen/tired eyes are a sign of sjogrens ad it sounds like others have this issue.

again, thanks for sharing you perspectives, means a lot to me!