Reinke's Oedema

[JanW]

Recently diagnosed with Reinke's Oedema because I'm hypothyroid - don't smoke never had. The only thing they say they can do for me is to give me speech and language therapy. From what I've read anything else risky.

Would be really interested to hear from anyone who has this and their experience or knowledge off.

[shaws Administrator]

This is a link I've just read and have the doctors given you a test for any thyroid gland problem. If not, ask for one to be done anyway. TSH, T4, T3. Get a copy of the results with the ranges and post on a new question.

Excerpt from the link below:-

This study suggests that hypothyroidism is not an aetiological factor in the development of Reinke's oedema

but the sentence before that says:-

Although the incidence of hypothyroidism in this group of Reinke's oedema patients is higher than expected in a normal population, it is similar to that in an age and sex matched control group, reflecting the prevalence of hypothyroidism in middle aged women

ncbi.nlm.nih.gov/pubmed/202...

[JanW in reply to shaws]

Thanks for the link interesting about age as the specialist said he sees woman of a certain age - like me 61 who have hypothyroidism and subsequently come down with Renkie's. Bloody annoying to be honest having never smoked in my life which seems to be one of the main causes though the causes themselves seem transient.

I had blood tests done before the hospital visit - a day before only time they could get me in though I gave plenty of notice. No idea of the results as the autoantibodies test I aked for takes longer and won't be in until next week. I always get copies of blood tests.

I had though it could have been kick started with me being autoimmune - Graves and Hashimo as my immune system attacked the inside of my mouth which it's done a lot and I lost a lot of teeth ditto other problems over the years. I asked the specialist if being auto could have triggered it but he said it would be very rare for the immune system to attack the larynx - yeah right walk a mile in my shoes matey you've no idea, if you're autoimmune doctors don't want to know. He didn't offer to do a test he said 'he didn't think I was that special' nice.

I will make a note to put through my blood tests next week.

[shaws Administrator in reply to JanW]

It is only rare if they've not come across it often. Have you sang in the past, maybe your throat was injured in some way.

It is amazing, isn't it - if you get one autoimmune you are apt to get more. I have 3 at present. Hopefully don't get anymore. It's bad enough keeping up-to-date and finding out about ways to medicate with the thyroid gland without using the medical dictionary/internet to diagnose/treat ourselves. We have become quite cynical about the medical profession but I think Endocrinology must take the spot for keeping patients suffering.

Your autoimmune sounds awful if it attacked your mouth. I wouldn't wish that on anyone.

I hope you recover soon.

[JanW]

Thanks Shaw's, no never sang in a choir etc and won't be now. Yes I'm afraid after 17 years of thyroid problems my blood tests always normal! - Graves Hashimos autoimmune my doctors like many - we've all been there couldn't care less. I was told by my doctor just before my hospital visit 'well you've had a lot of problems and nobody lives forever' I'm only 61! I told him exactly what I thought of his remark. Talk about the LCP. To be honest they wouldn't be interested in finding out if I did have other autoimmune problems. When you're ill and just trying to get a bit of help for yourself you are labelled a hypocondriac I know my friends have had the same even seen it on their notes. As you say you have to take care of yourself by researching online the best way.