Glaucoma

[krotsida]

Is Glaucoma ET symptom or Hydroxy?

I was diagnosed with glaucoma in the left eye and wondering if any others have gone down this road.

Thank you all.

[Otterfield]

Depending on how old you are, glaucoma is just one of those things we get as we age. As long as you keep being treated by the optician, you should be fine.

[krotsida in reply to Otterfield]

Hi Otterfield, that's good to know.

Have a nice Sunday.

Anastasia.

[Anag in reply to Otterfield]

My low pressure glaucoma was caused by my ET. It started in 2014. I was 49. It’s not just an age thing. My husbands high pressure glaucoma started at 45.

[Otterfield in reply to Anag]

That's interesting, we learn so much here.

[krotsida in reply to Anag]

I learn something new and challenging

here every day!

Thank you Anag, all the best to you and your husband.

[hunter5582]

There can be ocular manifestations of ET. Hard to say if it is related in your case. It would be best to review the issue with a MPN Specialist. If you cannot find one of those, perhaps show your eye doctor articles like this and ask if it could be related.

ncbi.nlm.nih.gov/pmc/articl...

hindawi.com/journals/joph/2...

Hope you get it all sorted out.

[krotsida in reply to hunter5582]

Appreciate the suggestion, Thanks hunter 5582.

[Anag]

Hi Krotsida,

My glaucoma was caused by my ET and this is how I figured it out. I had to bombard my eye doctor with questions. I had to dig for info!! Why should I have to do that? Why am I dishing out all this private money to doctors in high positions, apparently top of the line and not get proper diagnosis?

I found out that my glaucoma was a low pressure glaucoma, that my blood was not getting into my ocular capillaries and not transporting oxygen there, causing the ocular nerve damage. Why do I have to dig if I’m paying 170€ out of my pocket for a top specialist?

My ET started around 2010. In 2014, my beginning case of glaucoma was diagnosed. I’m very sensitive and Recognize symptoms Very early. I also knew I was not well for years and kept going to doctors for answers. Nothing. my endocrine specialist, GP, and many other doctors oversaw my ET for 7 years, even after having 2 TIAs on the way and up to 758 thrombos. I was fighting symptoms with meds on all sides with no avail. I was finally diagnosed when my 3rd TIA happened, 2017. 909 thrombos finally caught one doctors attention.

I finally put two and two together.

Thick blood = low blood flow to capillaries = damage.

I ran to my opthomologist and she was frozen. She had also seen my 600 at some point and hadn’t reactEd to it. Wasn’t that obvious? She, like most doctors, hardly knew anything about ET. I’ve read that eye doctors should order a blood test if there is a low pressure glaucoma, but she didn’t do that for 5 years. She kept watching. My glaucoma has not worsened since I’m treating the ET and keeping my blood thin. She agreed that my ET is most probably the cause of this type of glaucoma.

Please get more details about the type of glaucoma you have. Figure things out by educating yourself. I don’t wait for doctors anymore. I keep learning and see my doctors as partners.

Hope to have helped. Anag.

[krotsida in reply to Anag]

Yes you have help a lot!

Thick blood = low blood flow to capillaries = damage.

I thought so too! But the ophthalmologist refused to accept my saying. He was so

negative. I agree with you about educating my self and dont wait for doctors .

I appreciate you for the detail you went into.

Have a nice week.

Anastasia

[Anag in reply to krotsida]

At 55 and after seeing so much in life, I know one thing, if a doctor doesn’t take you seriously and you are a logical person, get to a doctor who’s respectful and willing to look sideways and grow in their own learning. We all have biological differences and we are all exceptions. We are all special! 😁

[Inca]

I discovered recently that I have high pressure in my eyes,so was prescribed drops to lower that.Hopefully I don't progress to Glaucoma.I have P V ,yes I have wondered if Hydrea for 10 yrs was the culprit,taking Rux now.

Good Luck,we need it don't we with this much misunderstood disease we have.!!!

[krotsida in reply to Inca]

its interesting. thank you for sharing Inca.

Greetings from Greece.

Anastasia.

[Inca in reply to krotsida]

Actually,I was in UK ,had my eyes tested at an opthalmist I had been to each year when visiting our daughter,foundry and gallery who sell my work.I need to have a test every year as a sculptor ,must have good vision.The man I saw last October was new,usually had seen another opthalmist ,told me I had cataract in left eye....usual tests for everything else...ok I was told.Returned home to France,went to opthalmist here re cataract removal.He diagnosed the high pressure in my eyes,cataracts in both eyes.....and the small lump on my lower lid as carcinoma ,was horrified that I had just been tested,paid huge price for new lenses !!!

Couldn't do cataract until carcinoma taken off,phoned immediately to a top eye surgeon in Toulouse,R V immediately,op arranged.....then of course Lock down for Covid!That seen to last week ,much larger than originally seen...so I am bandaged ,nurse 3 X per day ,drops etc .

Just wanted to say...why such differing diagnosis in a very short space of time....as you mentioned some medical specialists take little interest.

So lucky where we live,my care in every way is excellent.Really hope you get some answers,I will ask the eminent eye surgeon this week,if he knows of connection of eye pressure to M P N. Maybe I will get a Gallic shrug!!!!Sorry for long moan,Best to you.Sally

[krotsida in reply to Inca]

We have to be meticulous very careful about every small detail in order to make sure everything is fine.

Thank you Inca, Best wishes.

[Anag in reply to Inca]

Careful, my husband had high pressure and wasn’t treated with pressure drops, but was „watched“. All of a sudden the problem was huge and could no longer be lasered. He then found out his brother had glaucoma and pressure and was lasered at a pressure lower than my husbands initial diagnosis (where he didn’t even get treatment)! I’ve also learned that some have higher pressure and no glaucoma and others get glaucoma with lower pressure. We‘re unique. Take good care of your eyes!!! Keep a careful watch. 🙂

[krotsida in reply to Anag]

The details about your husband's glaucoma are exactly what I needed , to understand how to handle with care my problem.

I appreciate the details you have given me.

Injoy your day.

Anastasia.

[Inca in reply to Anag]

Hi there,

I always thought Glaucoma was a problem that ran in families,that you were tested for if that was a fact.

Perhaps it isn't !!

Hope you are keeping safe and well,Sally

[Otterfield]

Some really interesting information - I stand corrected, it's not always an age thing.

[Anag in reply to Otterfield]

🙂 we learn something knew every day. Have a good week!

[Superwoman]

Hi, I was Diagnosed last year with the start of Glaucoma in both eyes and high pressure, so I had laser treatment to put holes in my eyes to let the fluid out, this worked well for me, but they found I have now got cataracts all be it small.

Then earlier this year my eyes became really inflamed after what I thought was a nasty cold felt really unwell, but Haematologist seemed to think that I could of had Covid 19 as bloods were showing that I had some kind of infection, turns out that the gel in my eyes is causing the retina to detach from it. Unfortunately all my eye appointments have been cancelled until I don’t when 🤓 so put up with vision a bit blurred.

When I asked my Haematologist if Hydroxycarbamide could be causing the problem, he would not commit to saying yes or no, just said it could be age related. 😤

Anyway thought I would share my thoughts.

Jean

[krotsida in reply to Superwoman]

Hi Jan

I am so sorry that this has happened to you and am not surprised how difficult you are finding this. It can be very difficult when you are preparing yourself for an appointment and then it is cancelled.

I wish you all the best.

Anastasia.

[Inca in reply to Superwoman]

My consultant of 11 yrs is a very good and caring man,but I feel he same as other specialists don't like to admit to a lot of probs re M P N.Carcinoma for one ,I have had several removed from various parts of my anatomy!

You are having a rubbish time Jean....they love to say 'age related',it probably does have something to do with it..! I refuse to give in to the age thing.My son in law detached a retina after a nasty fall from his horse that slipped on the road,his helmet was completely smashed.All is well now,he needs good sight too for his work.I cannot remember if the surgery was was laser,he had to lie fairly still for a week.... Really feel for you hope you get better soon.Sally