I think I'm going BLIND! Should I switch doctors?
Asked by
joni1977 (
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January 24th, 2009
Ok, I have to apologize because I know I’ve probably mentioned several times on this site that I have thyroid disease. But here’s the deal. I’ve had it for over 5 years now and during this time I have switched doctors 3, maybe 4 times. My current physician tells me I don’t need treatment right now because it is inactive – maybe that’s because during my uptake and scan I was burned from the radiation…but that’s a different story. Now, I’m losing vision in my right eye when I wake up in the mornings. I’m terrified!! I’m seeing an Ophthalmologist and she tells me the vision loss is caused by my thyroid, but everything looks fine from my exam and x-rays. However, she is concerned that my PCP hasn’t treated my condition seriously. I am so tired of these changes, but I don’t want to lose my vision. Should I find yet another physician??
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Yes. Find a doctor you completely trust, and who explains things to you so that you are satisfied.
Absolutely! If you are unhappy with the way your physician is treating you and your condition, you should find a new doctor. Especially since your Opthalmologist believes that you are losing your vision as a result of your condition. Try to find a doctor who has experience in this disease, maybe an endocrinologist.
You haven’t mentioned if you are seeing a specialist. If not, get a referral immediately.
Yeah, when I had a thyroid condition my GP sent me straight to a ear, nose and throat specialist. Get a recommendation ASAP!
I have a thyroid condition also. It took years and multiple doctors to figure out what was going on. See an endocrinolgist asap.
No, my physician hasn’t referred me to an endocrinologist. Instead, he sent me straight to the hospital for a scan and uptake. When I went back to see him for the follow-up that’s when he told me it was inactive. A few months later I noticed a small, scaly patch on my neck (right side) and it’s slowly spreading. My physician, nor my dermatologist want to admit it was from the radioactive iodine, but I honestly think it was. I hate to sound like I’m whining, but I’m so frustrated….
You need to call your doctor first thing Monday morning and ask for a referral to an endocrinologist. If he won’t do it, find one who will take you without a referral. NOW.
It took me years to get my thyroid problem properly diagnosed and treated. For some reason the guidelines that doctors follow are just that: guidelines, not concrete limits. Thus they are open to interpretation. If your doctor isn’t using your experience in assessing your problem then you need to find a doctor that will.
Your doctor is supposed to be there for YOU.
You need to find a doctor that you are comfortable with and one that you feel is listening to your needs. Do NOT hesitate to chage doctors.
I would say change until you feel you have no more doubt. That doesn’t hold true if your mentally ill but I have the feeling that’s not the case with you.
@TylerM no, I haven’t completely lost my mind…yet
BTW, your thyroid itself is not causing your eye problems but “thyroid eye disease” is an autoimmune disease that happens in patients with thyroid problems. It is caused by a similar process to the one that made your thyroid go haywire to begin with, and 40% of cases happen after the thyroid disease has been successfully treated and the thyroid is inactive.
Thyroid eye disease is also called thyroid opthalmopathy. It needs to be treated and soon in case there is swelling that is affecting the optic nerve. You can read more about it at http://www.dundee.ac.uk/medther/tayendoweb/thyroid_eye_disease.htm
Also, the skin scaliness could also conceivably be an autoimmune problem, such as psoriasis.
If your thyroid is inactive due to radiation, you should be taking replacement thryroid hormone (Synthroid, or the generic form). Get to an endocronologist asap if your GP isn’t on top of this!
@Darwin that’s exactly what my Ophthalmologist is calling it! She also said the temporary vision loss is probably due to a retinal migraine, since all my tests are normal. I never knew I could have a migraine without a headache, but she said it’s possible. This is so stressful! After some of my eye bulging finally decreased, I got what some people call a lazy eye because the bulging caused the muscle to weaken. The only good thing is the doc says she doesn’t think I’m going to have any long term damage/problems with the eye, but to be on the safe side she’s sending me to have a CT scan on Tues. In the mean time I’m going to contact my PCP about that referral to an Endocrinologist!
Joni
I also have graves disease and eye problems. One thing I have learned is that your thyroid can be completly under control and the problems with the eyes can still flare up.
Not only should you be seeing an endecronologist for the thyroid, but you should also be seeing an eye specialist for the eye problems.
I see double due to the fact that “gunk” forms on the muscles that move my eyes as a result, they do not track at the same time. Prisims in my glasses give me clear vision for the most part. I am told the “gunk” is somehow related to having the graves disease.
@basp I am definitely going to see an endocrinologist next week. I have double vision too. It’s getting to where people are asking me what eye problems don’t I have! And it’s all dealing with my right eye. My eye doctor told me about 2 years ago I need prism in my glasses, which would have made my lenses at least an inch thick! Regardless, I would have worn the glasses but at that time I couldn’t afford them.
Joni
The prisims have been very helpful for me and, short of surgery, there isn’t much else they can do. My thyroid levels are good right now but the problems with my eyes are terrible. Some days I can barely see well enough to read regular size print and watching television gets harder by the day. I am also losing my pherophrial vision which, I don’t think is caused by the thyroid, but because of glacoma. I have a great eye doc that I trust a lot. I hope the best for you.
@joni1977 – I can tell you more than you want to know about retinal and optical migraines! I had my first one at work and freaked out – my left eye simply stopped working. Then gradually vision in my right eye dimmed, too. It was most unpleasant and quite a relief when my eye doctor showed me a pattern in a book that replicated the way in which my vision faded out.
They aren’t 100% sure what causes them but doctors think they are in essence the “aura” that often precedes a migraine, but the headache doesn’t necessarily follow. Various theories say that migraines are caused by allergies, temporary edema of the brain and even endocrine disturbances (such as thyroid problems- ha!). One thing is for sure, it is due to disturbance in the blood circulation in the brain. It has been proven that the pain of a migraine headache is associated with the narrowing of blood vessels in the brain followed by dilation. My eye doctor says the optical migraine is caused the same way.
I do know that my family has a tendency towards TIAs (transient ischemic attacks), where a blood vessel in the brain shuts down temporarily, causing a “mini-stroke.” Sometimes they are caused by blood clots but sometimes they are apparently the result of a spasm in a blood vessel. They are more common in women than in men.
easy, go to the hospital they CANT tell you wrong
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