Vision problems

Does anyone suffer from photosensitivity? I have the usual eye problems - blurred vision, optic migraines, dry eye syndrome etc, but just recently I seem to have become really light sensitive and I'm wondering if it's pHPT related or something unrelated?

Jasmine x

Hi Jasmine and a good day to everyone,
I really don't know but it would not surprise me if it was more thyroid related.  So many symptoms when female can be attributed to menopause like the dry eyes, my dry eye episodes tend to be worse in windy weather so Spring and Autumn but then can get it in between as well.  I know that certain shop lights, more LED types can trigger a migraine headache in me and I hate the new light bulbs that we have to buy now, I find the light is much harsher.  I do remember before starting Thyroxine that night driving was really hard, I found oncoming headlights just dazzling even though was not looking at them directly.  I've not had it since but I do find when my eyes are tired that I get a ghost shadow of letters underneath words, I've had eyes tested and they say they are fine, so no idea. I have had pain on and off in my right eye for years, an aching rather than prickling but I do hot compresses on eyelid plus drops and that helps a lot.  I did wonder if it was Sjogrens but I can cry for England so not that! 
Sue

Hi Jasmine

Sensitivity to bright lights is a known thyroid symptom, not sure if it's hpth as well.

For a long time I have had trouble with bright lights, drives Mr admin nuts as I don't like bright lights on in the house. I find the the worst lighting for me is in Tesco. Also driving at night is difficult with oncoming headlights. Bright sunshine is another problem.

I also have problems with darkness, have to have a night light on at night and I lose my balance if walking in the dark   

Nelly

Yup, Jasmine, count me in for the eye symptoms as well, although I have a degree of macular degeneration so it could be down to that.

If a bright light shines on something inside a plastic bag, I can't see the contents clearly, and I'm much more at home with subdued lighting, like Nelly.

I wouldn't be surprised if calcium crystals in the eyes were to blame. I have to remove half of Brighton Beach from mine several times a day!

Hey, ho, onwards we go - Love from Tigerlily xx

I also have some vision problems, I thought I had cataracts but my eye doctor couldn't find anything wrong. My thyroid seems to be fine, but I have trouble with oncoming lights when driving at night.

Hi Jasmine I have got very sensitive to bright lights especially at night and night driving is becoming more difficult. I get my eyes checked regularly as I wear contacts and the last 2 yrs I've noticed an increase in my prescription, which had been stable fir years and also I tend to get eye strain headaches a lot. I never had them before.
Amanda xxxx

I am not as sensitive as Mrs Admin, but it is very uncomfortable when i am facing bright lights, as i found recently when looking up from my hospital bed.
I am also hypothyroid.

Edwin

Thanks guys!  Mmmm interesting..... I've been hypothyroid since my sub total thyroidectomy in '95 but seem to have been well managed on 200 mcg of levothyroxine daily since then.  I do have some slight fluctuations where my levo is tweaked up or down from time to time but to be honest I've never really given much thought to some of my symptoms maybe being thyroid related, having thought myself to be well managed on levo.  In fact thyroid hasn't really been on my radar apart from the nuisance not having one has caused with my PT surgeries.  Mmmm food for thought ......

Jasmine x

Jasmine many of the hpth symptoms are the same as hypo/hyper thyroid symptoms so is difficult to know which is which.

200mcg is quite a high dose so i wonder if maybe you are slightly overmedicated, that can cause all the symptoms we might assume are hpth.

Just a thought.

Nelly

Thanks Nelly.  I had my thyroid levels checked at the same time as my Ca and PTH a couple of weeks ago and apparently everything's fine, no change required.  It's worth asking the question though although I doubt my GP will know the answer.....! After my first PT surgery failed last year and M the K wanted me to apply for permission to be prescribed Cinacalcet (it's very expensive - £60-£150 per day) I asked my GP for his views and he said he didn't know anything about it, saying it was above his pay grade, so clearly he wasn't bothered about finding out either ..... the endocrinologist didn't comment on the dosage either so presumably they're content to let me take it. I do fret about it though as I know it's a high dose ..

Jasmine x

Do you know what your thyroid results are ? Best not to rely on either GP or Endo knowing what dose is right, many are happy to let patients tick along on the wrong dose. I was unbeknown to me overmedicated for 5 years   which caused me no end of trouble.

Nelly

I just wrote a reply and when I pressed send it disappeared into cyberspace ......

Don't know much about interpreting thyroid levels Nelly.  I've requested copies of all my results from the practice nurse which I'm picking up tomorrow so I'll let you know.

Jasmine x

Never accept being told that your Thyroid bloods are 'fine' or 'in-range'.

This is laziness on behalf of your GP or Endo and it makes the assumption that the blood labs' reference ranges are appropriate for you, which may not necessarily the case. 

Sometimes, docs need to be reminded that they are supposed to treat the symptoms, meaning that the blood results should just be a guide.
Also, if you do not have the FT3 tested, your doc does not have the full picture. 

Sorry for the rant, but this is an area where it is sometimes necessary to challenge the professionals. 

Edwin

Well, geez, I just posted a nice, long reply too, and when I hit "Send," it disappeared!!! What is going on here?!! I don't have time to retype it right now. I will later on. That sure is annoying, isn't it?!!

Audrey

Ok, let me try this again!   

I too have a lot of eye problems. For 3 years prior to my parathyroid surgery, I had a lot of trouble with very dry eyes upon awakening every morning. The left was always worse than the right. As I mentioned before on here, when this happens it feels like the eyelid is stuck to the eyeball. It's very uncomfortable. After about 20 minutes, I was able to open it. Five months post-op I still have a little trouble with the left eye. It's not nearly as bad as it was before surgery, and it doesn't happen every morning anymore.

As far as light sensitivity goes, for many years my eyes have been very sensitive to light. It has gotten so bad, I am not comfortable outside unless I'm wearing sunglasses, even on rainy days! I always thought it was because I spent many, many hours baking in the sun in my younger days with no eye protection at all! Yes, I was rather stupid back then! I also have always done a lot of swimming. Now that we have our own pool, I am out there just about every day during the warm weather. I know that is very rough on the eyes, even when wearing sunglasses. The sunlight reflecting off of the water is very hard on the eyes. Oncoming lights are terrible! I am totally blinded from them. Maybe there is more to my light sensitivity than I knew, since you are all complaining of this problem too.

I also have a terrible problem with my eyes crossing now, causing double vision. I figure this is probably happening due to all of the muscle problems I'm having. If all of the muscles of my body are tight, cramping, and pulling all the time, it would only make sense that the muscles of the eyes are also being affected, right? This problem is especially bad when I'm tired and trying to read. Computer usage is rough at night for this reason.

And for the past couple of weeks, something new has cropped up with my eyes. I always treat myself to lunch out at the food court at the mall on Wednesdays. For the past 2 weeks, as soon as I sit down to eat, some strange, cloudy things start moving across my left eye.    Very strange. They seem to last the entire time I'm there. When I leave, they do too. I thought maybe it was from the light coming from all of the skylights overhead, but it's strange that just the left eye is being affected. Maybe there is more going on here. Guess it's time to make an appointment to get this checked out too. So tired of appointments!! I know you all understand this.

Yep, I think maybe we could safely add some new symptoms to all of the lists in the medical books and on Dr. Norman's site!

Audrey

Hello Everyone

This is an interesting thread for me, as I have all sorts of eye/head/face problems, cranial nerve palsies (3rd nerve palsy diagnosed and causing double vision, several suspected ...), jaw twitches, droopy eyelids, etc. In fact I said to my husband only recently that my tongue feels too big for my mouth and the teeth in my lower jaw seem to be moving apart.

This last symptom is an odd one and I asked my dentist recently if they thought I had a large tongue and they said it was probably a bit larger than average as it has indentations (scalloped tongue) at the sides where it rests against the side teeth. I reported to the consultant at the endo clinic earlier this year that I don't seem to know where to rest it comfortably in my mouth and it seemed to be ""heavy" on the front teeth of my lower jaw, seemingly making the teeth splay apart. She said "oh, yes, that's called maxglossia - you sometimes get that".

Another odd symptom is that (apart from early untreatable dry macular degeneration diagnosed last year) at the eye clinic I was unable to see the red numbers/letters out of the green background in the test and my peripheral vision is extremely poor (Peter creeps up on me in the kitchen to test it, and I don't see him coming at all ... nightmare!)

Well, with all my other symptoms (hypothyroid, "early" hyperthyroidism, osteopenia, bone pain, ovarian/kidney/gallbladder cysts etc etc) I've continued to check out FP's Best Practice website (now listed in Reference Section - hope you can access it - I sometimes had trouble) and these odd symptoms are actually mentioned there under Pituitary Disease. OMG, I don't want that, but when really odd symptoms occur such as the red/green thing, and the splaying teeth, which seem just so strange together, and are discovered listed quite clearly for what could be an associated disorder, then I think you have to sit up and take notice.

Apparently, visual field defects and difficult night driving are two of the first presenting symptoms of pituitary disorders.

Hooded, droopy eyes are another symptom if you drill down through everything Fausto P lists. I said to Peter last week that I could actually see better if I raised my eyebrows quite high to "un-hood" my eyes. I was angling for a brow lift, but it wasn't forthcoming! (Joke!) 

I suddenly feel as if I might be getting somewhere. I know it's tempting to think you have every disorder you read about, but we are intelligent people here trying to get well, and I get so sick (ha!) of being told "not to look on the internet because you'll think you have every problem under the sun".

This might seem a strange post, but I wanted to put all this down whilst I remembered it. I'm going to take a roll of wallpaper very soon and map out the connections a bit like a family tree. People think I'm potty (US: quite mad) when they see my paperwork but it helps me to keep things clear in my head and to "project manage" the whole picture (which no-one else seems to be doing).

The good news is that the consultant's registrar at Addenbrookes whom I saw recently (instead of the consultant) appears to be taking me seriously. She wrote a very comprehensive report back to my GP about our meeting which has heartened me somewhat, as I've been a bit short of allies (apart from my forum friends) in this odyssey. As Peter said, she is still training to be a medic, so all of her work, letters, etc. will be closely scrutinised, and as she is younger than most consultants she will hopefully have read the latest research, and be open to my offering her information that I've found.

Thanks for listening, everyone, I'll report back again with whatever else I find that might be useful.

Love from Tigerlily xx

Tigerlily, this is a great post! It was so nice of you to share all of this. I will be back later on to comment on it. I would just like to quickly say, if I would have stayed off of the internet, I would still have 2 parathyroid tumors in my neck!!!! I often wonder if doctors don't like us to search the internet for help because they feel threatened. I agree that in some cases people probably start imagining they have all sorts of things, but the fact is, in many cases people have helped cure themselves of various health issues. We have just as much ability to learn as the doctors do. Just because we do not have medical degrees, does not mean we are not capable of learning!!

Audrey

Tigerlily the large frilly tongue, droopy eyelids and visual problems are also classic thyroid symptoms  

When so many symptoms overlap it's difficult to know whats going on, good luck with your wallpaper map.

Nelly

Wow Tigerlilly
I wish you the best of luck with all your investigations I know you will get it sorted in the end.
Amanda xxxx