Going round in circles....

[swishtony]

Hi again, so after deciding to go for self testing I came up against so many (unanswered) questions that I decided to go back down the GP route. I phoned her on Friday and asked if I could go for further tests but she said as my TSH test came back as 'normal' the labs here would not do any further thyroid tests. I have an appointment this afternoon to discuss the situation.

No clue what to do now, maybe my problems are not thyroid but for about 3 years now I have been trying to get to the bottom of my many symptoms and a long journey has led me to believe I have some sort of thyroid problem. If I don't then I have something else wrong with me that seems to be undetectable.

Main symptoms are (long list!!) painful needling like itching, cant sleep more than about 5 hours, really tired all the time, sensitive to both hot and cold, tingling and numbness in both feet, tickly cough, constant cold/flu like symptoms, bad headaches occasionally, incredibly dry mouth all the time however much I drink, terrible brain fog and always forgetting things, feel nauseous after eating, feeling really hot one minute then really cold the next. So frustrating, I don't feel depressed, I have a great life and no real worries so I do not believe it is stress related as the docs keep suggesting. TBH I probably am depressed but that is because I've felt so bad for the last few years.

Any tips on how I should handle the GP this afternoon? No idea how to proceed with her as I believe yet again she will suggest leaving things a few weeks then see how I feel! I guess I will have to go back to self testing if that is the case, just found it really difficult to work out which test to do when, what to test with what, which actual tests to take etc etc. When I asked on here I did get some very helpful replies but the general opinion seemed to be asking why I was not getting the tests done through my GP so here I am at her door again!

Many thanks

[helvella]

Have you thought of Sjögren's syndrome? A bit here but lots else out there:

en.wikipedia.org/wiki/Sj%C3...

Did you actually get a private test? Did you post the results? I had a look at your profile but nothing obvious without going through all previous posts.

I suggest that you do your best to avoid the word "depressed" this afternoon as it so often seems to deliver a prescription for some form of anti-depressant.

Rod

[swishtony in reply to helvella]

Thanks for the reply. I was tested for Sjögren's syndrome by an ENT specialist because of the dry mouth, he said definitely not that. Something that keeps cropping up is an over active immune system, I did have HepC about 3 years ago and that cleared with a 6 month treatment of pegylated interferon and the antiviral drug ribavirin. Most of the symptoms I have seem to be since the treatment ended - not sure if that is a coincidence or not. The dry mouth was before (plus some others symptoms) but I presumed it was the HepC - bit confusing now as to what may have been HepC, what may have been side effects from the treatment, what may now be after effects of the treatment and what may actually be something completely different!

My doctor just seems totally uninterested and I think unless there is something that clearly labels me as dying I'm not sure I will get much joy out of her. I may ask her today for a referral but I imagine she won't do one without good reason. I will offer to go private so that may make a difference. I'm not sure if there is a specialist area in immunology, I guess there must be so maybe I will try her down that route.

And yes.... I really am not happy to go down any sort of depressed route, I work in the mental heath field and truly believe this is not an issue for me.

Thanks!

[ladytelita in reply to swishtony]

What are your actual test results for thyroid function? They might give some of us an idea as to whether anything is going on there at least.

The symptoms can be connected to thyroid but can alos be a number of other things. The itching is a tricky one. I've had that on and off for a very long time (over a decade) and never had it diagnosed as anything although I have been given anti-hystamines in the past for it. Since it makes little difference I don't take them anymore as the side effects were horrid (for me, I'm a bit prone to side effects).

Have you ever been in an accident? Or injured part of yourself significantly? Such as nerve damage? That can be a trigger for things like fibro or ME.

I would suggest you write down all your symptoms and hand it to the doctor. It's very easy to forget lesser issues when you're sitting there but they may be an important thing that gives the doctor a clue as to why you feel like you do.

[swishtony in reply to ladytelita]

Thanks - no accidents so to speak, I did rip the fleshy part of my thumb clean off (to the bone!!) in an accident a few years ago, now that was painful! Nerves never really regenerated and have little feeling in the thumb now.

[ladytelita in reply to swishtony]

Just so you know, that is disgusting. Now my thumb feels wierd.

[swishtony in reply to ladytelita]

Sorry, it was disgusting, if it had happened to someone else I would have fainted lol!

[swishtony]

Thanks for the replies.... well the GP has agreed to do some more tests.... a whole raft of them actually:

Bone profile, Ferritin, Folate, T3 (FT3), T4 (FT4), TSH, HbA1c, Liver function, B12, Vit D, Glucose - seems quite a complete list?

Let's see where this leads....

[ladytelita in reply to swishtony]

Good stuff, let us know the results!