[lulu71]

#1017859

It has taken me 8 years to get a diagnosis and even now i’m not sure they have got things right. In 2003 / 2004 i started to suffer from hairloss and night sweats the former lasted 6 months and the latter 2 months then both sudden stopped. in addition one eye became very slightly larger – the GP spotted it and sent me for a brain scan to check for a tumor (no tumour found but scan confirmed one eye was indeed bigger). thyroid was suspected but tsh was normal (no test for graves or hashimotos was made). got severe floaters in the ‘big’ eye – due to the strain on the eye i guess. Hairloss etc stopped.I have always been fairly low body weight and ‘hyper’ in energy / restlessness, huge appitite but not put on weight etc?

No real health symptoms for six years although the problems left by the large eye remained and hair did not grow back (i’d only lost a little in the harline) then symptoms started up again…no nightsweats or hairloss this time but tirdness, slight weight gain, eyelids began to swell, constipation eyes bulging slightly. TSH normal but diagnosed with hashimotos…tested for graves and was negative. In last three years eyes have become worse, they are too far forward very dry, uncomfortable feel ‘heavy’ my face is a mess, with bug eyes and hollows under them. I took levothyroixine which caused more hairloss (TSH went doswn to 0.6 which i know is hardly ‘hyper’.

Eyes are so bad that orbital decompresison was considered but the specialists wont do it due to my high myopia being a risk so they propose eyelid lengthening with graft from roof of mouth and fat transfer. I really don’t understand why I have exophthalmos and no one seems to be willing to explain it to me (MRI of eyes shows no fat behind eye and yet eyes are definately furtehr forward – even Dr’s agree). I just wondered if it is possible to have had graves and then for it to disappear (perhaps to be replaced by hashis) if i had ever had graves, would it show in the test for graves? Very very grateful for any info.

[Kimberly]

#1061341

Hello – The eye involvement used to be known as “Graves’ Eye Disease” or “Graves’ Ophthalmopathy”. The more common term now is “Thyroid Eye Disease” – because doctors are discovering that eye involvement can occur with Hashimoto’s Thyroiditis as well. Some patients do have both Graves’ *and* Hashi’s. As for going back through your medical history to see if you definitely had Graves’, you would need to have had specific antibody tests run, such as TSI or TRab.

If you can go back through your medical records and see that TSH was off, that is a potential red flag for thyroid issues…but it can’t distinguish Graves’ from Hashi’s or any other thyroid disorder.

[StacyQ]

#1061342

This is just from my experience and what happened to me, but, i feel like i’ve had Graves ever since I was a teenager (i’m 37 now) and was never diagnosed when I was younger. I had anxiety, sweats, heart palps, shakiness, etc, on and off since my teenages years. It was so bad one time that my mother took me to the dr for bloodwork and NOTHING. I was diagnosed in 2007 and got the RAI treatment in 2009 after horrible ups and downs with methimazole! Ugh. Anyways, I believe Graves CAN go unnoticed definitely. I believe it because it happened to me!

Good luck to you!
~Stacy

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