Graves disease eye symptoms

[leftbehind]

I have Graves disease and have had a thyroidectomy. It has been two years. My eyes run drip water, burn, are bloodshot, terrible bags under my eyes, and sometimes ache. When I tell the doctor she says I have allergies. I have never had allergies before. It's very scary because it cannot get proper treatment or anyone that seems to understand what I'm talking about. I also have depression and aching muscles. The doctor will not test the T3 anymore. I have started taking selenium on my own having no support from the doctor, 200 milligrams a day and it seems to be helping other things overall feeling better but not helping my eyes.

[flo-jo100]

Hi I would ask to be referred to an endocrinologist

[leftbehind in reply to flo-jo100]

I went to an endocrinologist for a year after thyroidectomy. He was not interested at all in my diet, or that I exercised...only interested in blood test results, not my symptoms. He wanted to do Floxamax infusion to me and I refused that. Finally told me I was uncooperative and not to come to him anymore. Then a general practitioner who refused to check T3 in blood test. I am taking Selenium on my own to help T3...I feel better in general, but eyes are not better. The doctors are scary and disappointing. Another doctor gave me antidepressants for depression that did no good at all because it is my thyroid level causing it. I'm so tired of being mistreated and it's expensive going to doctors who don't know what they are doing. I'm now taking selenium, and A&D vitamins. Thanks for your suggestion, endocrinologist, my co-pay is $50 per visit, beyond my budget.

[flo-jo100 in reply to leftbehind]

I know what you mean I’m on my second private endo and it’s still early days but I think I’ve found the right person

[Tile in reply to leftbehind]

Yes agree you can have your tyroid removed but the Graves antibodies don't go away. Try to get a doc to check your Graves antibodies. Also be careful with selenium it can build up and be toxic. You may be better taking 100 instead of 200. Selenium is in many foods. Selenium is also used in higher doses as a pesticide. Get your active B12 and serum folate checked too. You want to be on the high end. You have to be careful because your Graves antibodies can still cause thyroid hormones to be released. Get a Free T3 and reverse T3 they will show if your converting T4 to T3 or reverse T3. T4 is needed to convert B2 to FAD or active B2 this is very important for energy.and absorbing folate. Keep away from folic acid. A Bcomplex is important you want to have methylb12 and methylfolate not cyanoB12 and folic acid. Skip the B Vits for few days before tests. You also need optimal iron and ferritin above 65 for ferritin if possible. You should get iron panel done but dont take any iron for 5 days before tests. Or just wait until you get tested in case you have enough. Zinc and magnesium are also important for converting. It's shameful how the docs dont do the appropriate tests.

[leftbehind in reply to Tile]

How can you make the practitioners do these tests? They don't want to do anything but T4 test. I used to get the T3 and T4, now it is only T4 that they will order! I would like to go to a natural practitioner, but I can't afford it, insurance won't pay. So frustrating. Thank you for your suggestions.

[Tile in reply to leftbehind]

Antidepressants can block T4 to T3 conversion and usually make thyroid people feel worse. That doctor should've known this.

Think you need a real patient advocate group in the UK that can demand that the necessary thyroid, body chemistry, metabolic tests, etc be done and covered at the NHS level. These forums are as depressing as they are informative.

[cjrsquared]

Your doctor is an idiot, you need a referral to an ophthalmologist with experience of Thyroid eye disease (TED). Ask him/her if she is prepared to take responsibility if you end up with permanent eye damage! Hopefully they will then refer you to someone who can accurately diagnose your eye problems. Just because you have had a thyroidectomy doesn’t mean that you cannot still get ted from the graves antibodies. If it is allergies then you can get expert advice, if ted then treatment to save your sight.

I believe an optician can also refer to an ophthalmologist if your gp is resistant.

[helvella Administrator in reply to cjrsquared]

I believe an optician can also refer to an ophthalmologist...

This is certainly true in some areas - but I don't think it applies everywhere. This does seem to be the most sensible next step. Not all opticians are equal - suggest you check out your local ones and see which appears best.

[leftbehind in reply to cjrsquared]

I did go to a ophthalmologist/surgeon. I asked if he was familiar with Grave's disease, which he said yes. He did a laser treatment on one eye to relieve pressure by changing the drainage route? I have not noticed any difference.

[Tile in reply to leftbehind]

Go back to your opthal your eyes as a Grave's antibodies person take front stage... if the Laser didnt help tell him. You hv to reduce the pressure and get checked often for any eye tissue abnormalities that can start forcing your eyeballs forward. I notice that many Grave's treated people often have very watery eyes. Wendy Williams the TV host has dealt with eye issues for the last 15yrs after thyroid ablation.via meds. Maybe bc of your surgery you won't suffer as much. But you need higher dosages for your thyroid then most to reach optimal levels if you had your entire thyroid removed.

[Valarian in reply to leftbehind]

So this suggests the ophthalmologist did find changes consistent with Graves’. Did you get a report about this which you could show your GP/endo ?

[leftbehind in reply to Valarian]

I'm not sure that had to do with Graves eye disease because I had an injury to that eye previously and it bent the lens. I told this to the ophthalmologist. This procedure did not seem to make any difference that I noticed. I don't understand why they say I have dry eyes when my eyes are dripping down my face and I need to Use non prescription Lubricant Eye drops. It doesn't make any sense to me.

[Tile in reply to leftbehind]

You can have very watery eyes but still have dry eyes. Dry eyes are dxd deeper in eye tissues so teary eyes can still be dry eyes. Strange but true.

[cjrsquared]

True, in East Kent opticians can refer directly. It doesn’t surprise me that regional variations exist.

[Ellie-Louise]

My brother has constantly watering eyes, he has blocked tear ducts but refuses to have the operation. A friend also had them and did, she is back to normal now.

[leftbehind]

I am taking Naturethroid, and most general practitioners refuse to prescribe it.

[ThyroidResearcher in reply to leftbehind]

Be careful with that. When I took natural thyroid, the auto-antigens that remain in the product caused my Graves antibodies to increase. Make sure you check those if you go with the natural hormones. Remember --- Graves is a disease that attacks "natural" antigens.

[Valarian]

Well, allergies can start at any time, and this year has been a but if a nightmare for people with hay fever, so it’s possible that people who don’t normally notice any symptoms might be suffering.

Have you tried taking antihistamines ? If they don’t work, you would then be in a better position to challenge the allergy diagnosis.

[NessaClare]

Hi 200mg selenium per day is good helps to reduce swelling apparently. TEDct has lots of info about TED. Can you be referred by GP to Moorfields Hospital? x

[helvella Administrator in reply to NessaClare]

Please, maybe 200 micrograms - but absolutely NOT milligram quantities.

The documented adult human requirements do vary a bit but are typically around 70 micrograms a day. So, if you are absorbing it all, even 200 micrograms is more than needed.

Excess selenium is not good - and is reported to be likely at 800 micrograms a day.

[leftbehind in reply to helvella]

Yes it 200 mcg a day the common dose off the shelf.

[leftbehind in reply to NessaClare]

I am in Seattle area United States, so can't go to places in UK. But that doesn't mean the advice isn't good. Thanks.

[leftbehind in reply to NessaClare]

I'm in the I'm in the US Seattle area. Thanks anyway.