[Candi28]

#1017942

Hi everyone.. I am new here, but not new to Graves. I have had it since I was 19, I am 28 now. I have been treated with Methimazole for the first 6 years and then put on PTU up until recently after I had my son. I am back on Methimazole and have even been able to lower my dose. My problem however is the symptoms…. I have MANY and I am not sure what is related to the graves.

Before my diagnosis of graves I was getting horrible anxiety and was put on an antidepressant. Years later, still on it I started having rapid heart rate and sweating. My eyes were also bulging as well. After numerous Dr.’s they finally figured out that I had Graves and had TED. I was immediately put on methimazole and within months the TED bulging went away.

In 2006, 1 year after stopping the antidepressant), I started getting panic attacks around a stressful time and felt like I was living in one big panic attack. Everything was foggy and unfamiliar. I noticed floaters in my eyes and things seemed a little fuzzy. I spent 2 months feeling this way until I was told I should go back on the antidepressant. Within a few weeks I started getting better and within a month 1/2 was back to 90% and remained that way. I have since then had intermediate sensitivity to light and even night time (dusk hour lighting). It would come and go. However… going in to grocery stores and malls… it would drive me crazy.. my eyes would start to hurt so bad.

In 2009, around the same time I stopped an antipressant, I started noticing something weird…. when cars would pass in front of me or my dog would walk past me in low lighting…. I would see a shadow trail follow it. A week or two later I found out I was pregnant….a few weeks later my mom passed away suddenly so I was under a lot of stress as my symptoms worsened. I started noticing halos around objects as well. I had my son in december of 2009 and decided to go back on the antidepressant as I was feeling a lot of anxiety. Within a few weeks I was feeling that familiar vision aching I’ve had in the past. I decided I wasn’t feeling anything good from the antidepressant and switched to another. Within 3 days my vision got worse.I started noticing what looked like static or sparkles on a lot of surfaces in dim light. I started seeing a neurologist and a chiropractor around this time from a car accident I was in while pregnant. I was put on a medicine to treat migraines as that was what the Dr. thought I had. It didn’t help and everything was still progressing. I started noticing that bright lights would stay in my eyes for longer than normal. If I was reading on my computer or a book and looked away I would see lines in my vision still. Also if I looked at tail lights from a car in front of me the red light would stick in my eyes, etc. I am not sure what is going on with me, but my endo says it is not related to TD, but I have spoken to quite a few who have it as well…..

Am I alone in this here with these symptoms?

Thanks,
Candi

[Ski]

#1061755

Your vision symptoms don’t sound like classic TED symptoms, but some are similar. Are you seeing an ophthalmologist for these symptoms? The reason I ask is that they are the best doctors to diagnose/treat TED ~ optometrists and opticians are not the right doctors to see, as they don’t have the education necessary to successfully manage TED. The flashes in your vision are of concern because they can signal a retinal tear, and that would be something you need to treat immediately. Please see an ophthalmologist (or neuro-ophthalmologist, even better) and get an evaluation as soon as possible.

[Ski]

#1061756

Just one more quick comment ~ if you are experiencing a retinal tear, I’m not implying that’s related to TED. I’ve never heard of those being connected. I do recall that my mother had a retinal tear and it was very frightening, needing immediate treatment.

[scarlett]

#1061757

Do some research on ocular migraines — see if your symptoms fit.

[erica]

#1061758

Sorry to hear of your eye problems, that is very concerning.

6 years seems like a long time to be on Methimazole. Does anyone else think this is a very long time? I was not aware one could be on it that long. That’s great that now you are able to lower the dosage! I am confused why it took this long for that to happen. For you to be on it that long I am assuming that you still had hyper levels when taking it, so why didn’t the doctor up the dosage to get your levels in check sooner? Maybe they did, I just have not read of someone taking it that long.

Hope you get some answers and get better soon.

[Candi28]

#1061759

Hello,

Thank you both for the replies.

My neuro opthalmologist was not too concerned with my eyes and his specialist (for autoimmune related illnesses) said the vessels seemed inflammed in my eyes, but the dr. seems to think I have occipital neuralgia because I also get daily headaches.

I myself am unsure as I’ve spoken with other graves patients who have my exact problem/symptoms. I am also concerned that it’s from the ATD’s. I am thinking about going permanent to get off the meds but am so afraid. I do not know the down side of ablation vs removal. Are there ways to protect the vision now from the RAI?

Thank you both.

P/S I agree I have been on the methimazole for too long. My insurance ran out years ago and that is why I could not do surgery. My insurance will not cover anything thyroid related now, so it’s all out of pocket. I need to see what is safest and cheapest.

[erica]

#1061760

I am in the same boat with insurance, mine is awful. I would seek out free clinics where doctors from good hospitals volunteer. You can find that out by contacting a good hospital near you and inquiring. Also, be sure to check out if you qualify for any programs in your area that would help cover you.

Were you under the care of an endo? Who let you just keep taking the ADTs for six years, an endo or you regular doctor? In that time, were you getting your blood checked? Sorry for the questions, just concerned and confused at why after 18 months, if there was not improvement was there no change in the dosage to force an improvement of some kind. I could be wrong, but it is my understanding these drugs are not meant to be taken long term.

Please don’t stop any meds without letting a doctor know about it.

There are pros and cons for all the thyroid treatments. My advice would be to read all you can about each one, making sure the site is reputable. Be wary, there are scary stories out there about each treatment, but people have had success with all of them too. You just have to weigh your options and think about what is best for you with the advice of a good doctor.
My two cents after doing some research is to not do the RAI treatment, it seems that though some people have had luck, others still are hyper afterward, sometimes bouncing between hyper and hypo. There is an article on this website (Graves Disease Foundation) named :Feature On Living With Graves’ Published In U.S. News & World Report, from a girl that had it done, if you go to the main page you can find it, here is the link directly to it : http://health.usnews.com/health-news/ma … a-lifetime

Now of course that is just one girl. There are many on the bulletin board with their own experiences, both good and bad.

[Kimberly]

#1061761

Candi28 wrote:Are there ways to protect the vision now from the RAI?

Hello – Some docs believe that a round of steroids administered in conjunction with the RAI can prevent worsening of eye issues, but of course, steroids come with their own side effects — so this is a decision that you will want to make with your doctors’ input.

[Ski]

#1061762

As to the question about the effectiveness of RAI: conventional wisdom these days is to aim for an ablative dose (total destruction of the gland), then positive outcomes are in the majority by far.

[Candi28]

#1061763

Wow, thank you all for your input and the link!!! To answer your question regarding the length of time on ATD’s… I was stable for a while while an Endo was overseeing me, but she never tested anything much other than TSH. She only went by that number. The Dr. I am seeing now is wonderful. She actually said she wouldn’t recommend me to do the RAI and prefers removal for my case… maybe because of the previous TED and the now vision symptoms I am having. My headaches are getting worse and now I feel like I can’t breathe.

[stevo]

#1061764

hello, ive just recently been diognosed with Graves disease and CFS and had horrible light sensitivity with mainly fluorescent light which triggered off my Graves. A trip to the supermarkets were impossible because would make me violently ill afters my throat and neck muscles and thyroid swelled up. But found out that taking Ibuprofen or any anti imflamitaries for the neck pain and thyroid pain, that this is one of the side effects for people with Graves.
Stopped taking Anti imflammitaries and my light sensitivity eased bigtime i still have to wear mirrored sun glasses out and about but better with other lights ie Telly, monitor and sunlight. I really feel for anyone who has Graves, its changed my once happy life to a shambles(always teary). Not sure if i blame the doctors for throwing many tablets wrongly diagnosed like Penicillin, anti depressants, antibiotics and anti acids for suspected acid reflux because ive had a sore throat for 10 months and counting,but knew this were rubbish???? These all weaken the immune system so got virals which triggered off my Graves.

I Hope this helps for you.

stephen

[bestwife]

#1061765

you decribed my eye smyptom exactly trails of light ,halo, red staying,i also get spots of my vision the seem to be blacked out from time to time. i have been to eye dr. in the last 6 mnth i went form needing reading glasses to tri-focals but i figured it was GD seeing i also had 3 spells of rapid growing thyroid,and regular storms during this time. i will keep you in my thoughts crossing fiingers for your relief.

[james19464]

#1061766

I have had some problems with my eyes, too. I agree, the floaters may have something to do with a retinal tear. That’s what I have. But usually it happens when you’re older, over 45 or so. The bright lights in a halo could also be a type of migraine. I have those, too. But it helped when I went to my eye doctor, and he sent me to a retinal specialist, who diagnosed all of this. That certainly made me feel better, just knowing what it was. Sometimes they can help right away with the retinal tear, especially if it’s more advanced.

[Author]

Posts