What next? Advice pls

[dopeymaz]

Hi guys
Firstly..apologies for the longish post.
Secondly...I'm not sure whether I should be posting here as I am still in the process of trying to find someone to take me seriously!
After months of GP appts presenting with lymphadenopathy and total lack of energy and general feeling of illness, I got refrerred to an endocrinologist. The docs have taken bloods on a many occasions and thyroid results always come back in the normal range... although I know that I am definitely not feeling normal!!
My neck is so swollen and the pressure is now making me feel as if I am choking, especially when I lay down at night.
Other symptoms are - lack of energy, sleepiness, brain-fog, speech probs (unable to get words out), poor concentration and memory, weight gain, dry hair and skin, unable to wake up in the morning (an understatement!)...and much more but I'm starting to sound like a Christmas Tree!!
My endo appointment was today...and boy do I wish I hadn't wasted my time. Unfortunately, I was seen by the Endo's registrar, who was a diabetic registrar! Basically, after showing him pics of how I've deteriorated over 18 months and telling him of my symptoms, I was basically told to join a slimming club and join a gym. I was so shocked and upset at this. If I had the energy to be that active, I would give my right arm to be able to do just that! At the moment, I barely make it to work everyday!
Most of you guys, I see, are from the US, and things may be different there. But, what I'd like to know is...what next? There are obviously very few endo's in our region and my doctors keep saying my results are normal so it must be something else...but what? Nobody seems to be taking it seriously, although I have read that prolonged untreated hypo is dangerous.
Have any of you guys had this kind of experience and if so, what did you do about it?? I'm hitting rock bottom so
any advice would be greatly appreciated.
Thanks.

[StoneFox]

Hi There

I went to see my Dr about something completely unrelated late last and he happened to point out that I had a lump in my throat, bit like an adam's apple. I admitted that I had known it was there but it had been visable since I was about eight (now 27) and thought it was just my neck. After seeing an ENT specialist and having it biopsied, scanned etc found out that I had a multi nodular goiter which I had removed last Wednesday. Prior to this (probably for almost two years) I had completely lost concentration, felt like I was going a bit mad, emotions and periods all over the place, insomnia, anxiety, the works. The reason I mention all of this to you is that I had my thyriod levels taken and they were completely normal too.
I don't know whether you're from the UK like me or elsewhere but here we really have to fight sometimes to get things done. Once the biopsy came back negative they were prepared to just leave it but I wasn't. I explained to the specialist that my younger sister had died two years prior from Ewing Sarcoma, rare bone cancer because she was misdiagnosed for 22 months by which time it was too late. Stuff like that makes you err on the side of caution! Anyway, the surgeons last week seemed to be under the impression that the primary reason I wanted to have this goiter removed was because of cosmetic reasons. After the surgery they both came to see me and said that until they opened me up they had no idea how large the lump was and was around 8cm x 8cm and it was necassary surgery to remove it before it grew. I have to say that since having it removed I feel wonderful. Mine was a great experience and even now my energy is three/four times what it was. I don't know what you have but do a bit of your own research and maybe (forcibly) request a scan of your neck?

[dopeymaz]

Hi Stonefox
Thanks for your reply. You're right about having to fight to get sense in this country (Yes I'm UK too) but I'm encouraged by your good news. Glad to hear that you're feeling so much better. Maybe my next step should be to demand a scan to see if that helps getting to the root of this and maybe then I can post a positive message too! I see my GP this Friday, so I'll cross my fingers!
Thanks again. :)

[tiggerg65]

hello i am from the USA and it no difference here. the dr think they know everything. i my endo says i'm fine my gp says the same. but i wish they could live inside of this body of mine, maybe then they will own up tp not knowing everything. dont know where else to turn. linda