Thyroid UK
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Macular degeneration !!

Just when you think you cant get anything else wrong with you.....I get told I have muscular degeneration in my eyes and im only 52 years old.

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Did a medical doctor tell you that? I was told I had macular degeneration by an optomotrist, but then I went to an opthomologist who said is was something else (a druzen) that I had had since my thrities. If you smoke though you are more likely to get macular degeneration.

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Hi AnnNY, It was only the optometrist that told me I have it in both eyes. He just said there was nothing I could do other than don't smoke....which I never have, take 20 mins excersice each day....which I do, eat fruit and veg......which I do, and eat oily fish twice a week......I don't do this but I take Krill oil. So there is nothing else I can do. He said I was young to have it. He also said it was dry macular degeneration, but it can change to wet.

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Very sorry to hear that, Mandy. I hope there's something can be done to halt the progression.

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Thankyou Clutter, Unfortunately I already do all the things he said that can halt it.

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There's two kinds of macular degeneration: wet and dry. They have different prognoses. You need to find out which you have in order to determine what it is you need to do.

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I was told I have dry, but it can turn to wet, and there is no treatment.

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There are things you can do in order to reduce progression. No beta carotene containing vitamin supplements, take lutein and zeaxanthin (check Amazon for Webber Naturals 25 mg softgels), ... there is good information on the internet for this. Don't smoke.

Lutein and zeaxanthin accumulate in the lens of the eye and provide 'natural sunscreen' protection for the retina. The yellow pigment screens out harmful blue lightwaves. You need to take it every day because build up is gradual. Wear good sunglasses if there's a lot of sunshine (not much likelihood of that happening in England now.....)

My 'bro has dry macular degeneration and this, except for not smoking, is what he does. He was diagnosed a long time ago and is stable. He's almost 65 years old and he's had this problem for more than 25 years now. Doesn't seem to prevent him from playing games with his iPhone and interrupting conversations to show the latest funny video and drive me nuts. garrrrrrrrrh!

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Thankyou, That has given me a bit more reassurance. I will deffinately try all of this. Thankyou

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Has an opthalmologist told you this? If not then definately see one. I had suspected macular degeneration but it turned out to be macular adhesions which are not so serious though you do have to be on the lookout for a detached retina.

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Hi Churchie,It was just my routine for my 2 year check up. How do I get to see an opthamoligist without being referred? I was just told there is no treatment and to go back in 2 years unless my vision gets worse.

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I'm a bit confused. Do you mean your optician said this? They are definitely not qualified to make this diagnosis. Why do you not want to be referred?

It was at my eye check up the the initial problem was identified. The optician then wrote a letter to the GP who refers you on. Actually I went private in the end as I wanted to be seen quickly and was well worth the peace of mind.

52 is a little early for macular degeneration but not completely impossible but it is vital that you find out if you do whether it is wet or dry as with one of them (wet I think) you can go blind very quickly so early treatment will arrest the development.

If an optician said this to you and then did nothing but to say come back in 2 years very very definately CHANGE YOUR OPTICIAN. The macular degeneration society website has good information and local support groups.

Let me know if I can help further and best of luck.

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Thankyou. They took photos of the backs of my eyes which apparently showed that I had it. He said there was no cure and that he would see me again in 2 years unless my vision got worse. He never recommended that I go to see anyone else. He said it was dry that I had, but it could turn to wet. Would it still be worth trying to get a private appointment to see a speacialist. Thankyou.

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Thanks, mandy. Not sure which area you are (SW/NW etc) but there are specialist eye hospitals.

Which thyroid auto antibodies do you have? I do believe thyroid antibodies do crosslink with eye tissues. I have seen some articles before as I looked into this myself. I too, have eye issues. I'm around the same age as you.

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Hi Omega, I live inbetween Salisbury and Swindon. I know I had or have antibodies as I have Hashimotos but I don't know what they are. I think I need to get into researching a bit more. I only found out on Friday and it is still a shock to me. I didn't know that you could have private appointments to see eye speacialists so maybe that might be an option for me aswell. Thankyou.

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Poor you! What a dreadful thing to be told out of the blue.

Get optician to give you a letter for your doctor and ask doc to be referred to an eye doctor to make sure the 'diagnosis' is accurate and get a better informed prognosis.

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This is not a Ophthalmologist.. i surely wouldn't take his word for it! I would get to a real eye doctor and take it from there..plus, research on line. I have heard there are things you can do. Your thyroid meds, most likely aren't right either.

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I know how you feel, had my appointment at the eye clinic last week and was told my TED was now stable and I was being discharged, I was over the moon, but in the next breath doctor said but you have glaucoma of both eyes and will be completely blind within a few years, I was devastated after all I had been through. Now waiting for another specialists appointment, researched on Internet and am feeling a bit more positive.

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You should have twisted his testicles off and let him know you're doing it now while you can still see where to find them.

What utter rubbish. Seems the ophthalmologists are right up there with the endocrinologists in being offensive.

Glaucoma is treatable. There's two kinds (isn't it lovely? Two kinds of macular degeneration, two kinds of glaucoma....lah dee dah).

I'm really glad you are feeling more positive after doing your own research.

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Haha gabkad. Think I was in shock as I usually lash out first and think later.

Hoping to have appointment soon to see how things are. Have been told to see GP to make sure levels are ok as managing those on my own at the moment.

I was afraid to sleep at first incase I couldn't see when I woke up. It's amazing what goes through your head.

These doctors don't know how they affect people.

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Glad you said that duster.....I was frightened to go to sleep incase I couldn't see when I woke up aswell.

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Hi Duster, Cant they do anything about your Glaucoma ? My husband has got it and his was aggressive. He had laser surgery to burn holes in the backs of both eyes to drain the fluid. Now he just has drops and they monitor him once a year at the hospital.

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I know a man that lived with it all his life.

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The optician chap just told me it could happen in a couple of years or it could take several. fingers crossed.

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Hi Mandy

In Oxford there is a research going on ask your Gp to ref you.

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Thankyou Afaghieh, Is it at an Oxford hospital that they are researching it? I was just wondering as they might do private appointments there.

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I agree with Churchie

Are you sure it is the "Optician/optometrist" not "Ophthalmologist" who told you "you have MD"?

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It was the man who done all the sight tests at my opticians. It wasn't at a hospital eye clinic !!!!!!

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Guys for glaucoma , there is very advanced techniques to halt progression which is available on Nhs . 1 tribactome and 2 istent

Natural herb Franklin reduces eye pressure dramatically...

For macular degeneration buy omega 3 with high epa and dha, there are studies that it can stop progression of macular degeneration

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My mother and grandma have/had glaucoma so I have free eye tests now I am well on the way past forty. I have good eyes so far - long may it last. Hoping my PT doesn't have any effect - just went to get reading material to my Kindle and there was a book on thyroid eye disease! Got the sample to see what that's about.

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Hi, I take Krill oil, which is suppose to be better than omega 3. The chap at the opticians said it would help it though, not stop it. Could he be wrong then?

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" I take Krill oil, which is suppose to be better than omega 3. The chap at the opticians said it would help it though, not stop it. Could he be wrong then?"

Disease process has nothing to do with what supplements you are taking. I believe in good nutrition and supplements myself and I am on a few of these. But these will not actively change the course of the disease or halt it.

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He just told me that it would "help" it to take oil. He didn't say it would stop it. Not sure how it can help it unless he means it would help slow it down.

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I know some people who are on Krill Oil - if you "feel" it's helping then I would stay on personally.

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Thankyou omega

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Can you tell me more about the natural herb Franklin please Mzahid, I tried Googling it, but could not find it. :(

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Hi sorry it was typo the name of the herb is Coleus Forskohli, I use it everyday a capsule and my eye pressure had come down dramatically

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Many thanks Mzahid, I will Google it again ;) I had no idea there was anything out there at all to help with my painful eye pressure.

Great also that I can get it myself without having to ask my Doctor. :)

Can you kindly PM me on what dose you are on please ?

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Thank you, mandy :D That's pretty clear.

Hugs

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Thankyou omega x

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mandy-white - I was doing some online research the other day and happened upon articles about the success doctors have had using ozone therapy oforvarious medical conditions. Macular degeneration was one of them. There's a lot about it, online, so you will have to do your own research, but it strikes me as authentic. It also makes sense. I hope it may help you.

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Thankyou Ransom, How did you find out about the ozone therapy online. I researched mascular degeneration but haven't found anything about ozone therapy. Thankyou.

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Hi Mandy, I'm sorry to hear that. My sister has it and runs in our family. I would definitely go to another specialist and see if there is more they can do. Keep us posted. Her doctor also has her on fish oil every day. My sister is doing good. She had surgery and takes drops. You are right on top of everything else. Her doctor said hereditary and I think that right as my mom sister had it. Pamper yourself and yeah get opinions. Hang in there.

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I was told it was hereditary, although I don't know of anyone in my family that has or had it.

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I have read there is a link between Macular Degeneration and B12 deficiency.

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Oh I didn't realise that. Can you get a private blood test anywhere for B12 ??

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Here:

thyroiduk.org.uk/tuk/testin...

I recommend that you get an Active B12 test - have a read here:

thyroiduk.org.uk/tuk/testin...

Ask before you get tested to be 100% sure that the test active B12. Do NOT supplement with B12 before being tested - it makes it much more difficult to interpret test results.

Rod

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Thankyou Rod,, I will give them a ring tomorrow and order one.

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Definitely go to an Ophthalmologist. In the US there are even retinologist. Since I take plaquenil which can affect the retinas, I have some of the most examined retinas in the universe. Opticians can see things that is not macular degeneration and misdiagnose you. Even Ophthalmologists have felt unsure about what they were seeing and sent me to retinologists. Like I said earlier, I was told I had macular degeneration by a Optician and it wasn't the case at all. I had a harmless growth, that has been causing alarm by some since I was in my early 30s.

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Thankyou. I am going to pay and see a specialist now after all the brilliant replies I have had giving me advice. Thankyou. It is wrong that an optician doesn't automatically tell you to go and see one isn't it.

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I agree strongly with everyone who suggests you get referred.

In my part of England, the GPs don't want to know about most eye problems and the ordinary high-street opticians can and do refer patients directly to the local eye consultants. It was done for me (not for macular degeneration).

My mother had some level of macular degeneration but she also had cataracts. The cataracts were operated on and her sight improved enormously. The surgeon was delighted the first one helped so much, that is why they gave her the second one. The original belief was that the operations might not have been worth doing.

There are special glasses, including ones that can go over other glasses, see here:

macularsociety.org/about-ma...

Rod

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Thankyou Rod for your advice. I am going to go to my GP to get them to give me a referral to see someone privately. I wouldn't have done this if it hadn't of been for this website giving me all this encouragement and advice. I will have a look at the website in a minute thankyou.

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Yeah, after Monet destroyed a bunch of his paintings after they operated on his eyes and he realized that the world really isn't 'impressionist'. LOL!

cheers, Rod.

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Once again Rod, thankyou. It is a very good site.

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My mum who is nearly 83 has macular degeneration. She has regular injections right into her eye which is supposed to halt progression, it can't reverse it. She has to wait every month for them to tell her whether the last injection was successful.

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Thankyou. It is unbelievable to think I was just told that there is nothing I can do and to go back in 2 years or earlier if my sight gets worse.

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Isn't that the wet form?

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Yes, you might well be right. My mum can't retain that sort of information. They gave her a leaflet about it but she never keeps them long enough! She just can't believe that it costs a fortune for each injection....like she isn't worth it!!

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This is quite helpful re helping eyes:

allaboutvision.com/nutritio...

I know a woman who was told in her 50's that the had Macular Eye Disease and nothing could be done. She is now in her 80's and she went to the Eye Dept for the first time in many years and was told that if she had come earlier they could have helped her not to have such deterioraten as in the meantime there has been leaps and bounds in how treatment is carried out. She is now nearly blind.

Make an appointment preferably if there is a Moorfields Eye Dept in your local hospital.

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Thankyou Shaws. I am definitely going to make an appointment to see someone. I thought it might be better to pay and go to a private hospital otherwise I will have to wait months for a NHS one.

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I agree as our eyes are so precious. It would be worth a journey to Moorfields and they do have private patients too.

moorfields.nhs.uk/content/p...

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Thankyou shaws. I cant get to Moorfields, but have made a private appointment to see a specialist that worked at Moorfields. I will let you all know how I get on when I go on 4th Feb. Thankyou.

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Fingers crossed and it will seem a long time to 4th Feb. :)

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Thankyou x

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Hi..I was diagnosed with this a few years ago and I am 49..it's possible that I got mine from the radio iodine treatment I had for my thyroid cancer...I did a lot of research and was advised to take supplements which I have done every day..Macushield and Retinex...unless it's some bizarre coincidence the macular degeneration has not got worse and if anything been halted for now...I have my eyes examined today and saw for myself. I have never smoked by the way. I was told I have the start of a cataract but I can cope with that for now...the MD was a real blow and very frightening. Am hoping it's the supplements that have helped..I shall keep taking them.

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Hi Sesbo,

I don't know what could have caused mine. I was just told to eat kale, blueberries etc, Also to take Krill oil. I have to go back in a year. It was such a shock when I was told I had Macular Degeneration. I knew all about it because i had read about it in the waiting room of a hospital when I was waiting for my husbands appointment as he has glaucoma. It worried me so much I went for a second opinion, but they said the same.

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Hi..yes it is shocking to be told this and if you are like me your mind can go overtime worrying..I buy a product called Macushield...you can easily order it online..I also take lutein/retained...like I said earlier something here is helping! I also wear dark glasses outside even if. Its not very sunny. Yes you can eat green veg etc...but you probably have to eat a lot of it!!!

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Hi Sesbo,

Thankyou. I shall look online and buy some. I am glad yours is stable. How often do you have eye tests? They told me to just go back in 2 years. x

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Hi Mandy-White...sorry I have just found your post and didn't reply!!! earlier in my post it should read Lutein/Retinex....I have my eyes tested every two years, did you get the Macushield??? I buy the Lutein/Retinex from a healthspan and have the Macushield on repeat subscription from Amazon...is all expensive but surely worth it xx

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I am new at this and have just been diagnosed at age 44 with Drusen. I know I have small bumps on my retina. Is this macular degeneration or not? I was referred to the Salt Lake City Eye Institute, go this Tuesday and cutiouscurious. Things I have read said yes and some say no.

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