I am in a panic this evening as I think I might have dealt with this in the wrong way. I know that lots of you are really suffering with our bodies getting sick and when I read some of the posts on this site I think that I've had it very easy, but don't know how to deal with it now. I would be very grateful for any advice.
I am going to see my local GP tomorrow morning to explain what has been going on, but I am worried that he won't take me seriously.
For me, this started in about April. I had been feeling unwell for a while and had called my local surgery a couple of times to get an appointment, but as it wasn't an emergency, was told that they could see me in a week or so. My life is quite busy, as my husband works and lives in London during the week and my children are at boarding school, so I never know when I need to be where for any of them (my complete priority) and planning in advance is difficult. So, I never made the appointment. Anyway, I was in London for a couple of days (I used to live there) and was feeling horrible so decided to go and see a private GP that I used to go to for my children when they were little.
I was exhausted, my eyebrows and hair had been falling out for a couple of years, my face bright red...and I just wanted to ask him what he thought. He took some blood and called me the next day to say that it was all fine, I was sub-clinical hypothyroid (TSH about 6) and that taking 25mcg of Levothyroxine would sort it all out.
I started taking it and within a week I started to feel much, much worse. My body ached, I couldn't stop sleeping (I NEVER sleep between 3 and 6am), my headaches were worse, I couldn't get up in the morning and lots of other things. I went back and he upped my dose to 50mcg (where I am still) and referred me to an Endo who took lots of blood, sent me for various scans and asked me to come back.
The results were that I had positive ANA antibodies, anti-Ro antibodies, positive anti-adrenal antibodies, fibrotic thyroiditis and Hashimotos. He didn't want to increase my dose of Levo until I'd been to a Lupus specialist. I did this and all of the above was confirmed. He told me that I have connective tissue auto-immune..def Sjorgrens, but rash, photosensitivity, aches and pains and some lupus symptoms (but not confirmed).
I feel like I've come to the end of my private medical insurance (as it's a chronic not acute situation) with no clue about what I'm supposed to do next. I am taking Levo, Plaquenil (or new name) and have had steroid injections to help. I still feel absolutely exhausted and am sure that I'm not on a big enough dose of Levo to help (although recent bloods show TSH down at 2.4 (a good thing?)). I don't normally sleep, so when I do sleep for 10 hours at night and still am desperate to go to bed in the afternoon, I know there's something wrong.
Anyway, I have made an appointment for tomorrow morning and am scared that the GP is going to ignore me (because TSH isn't high enough for them to think there's anything wrong). I also think that they might be cross that I went down the private route and leave me to that.
I am really not sure how to deal with tomorrow. If he isn't kind, I might cry....again...and I really need some help from him in how to manage this. I don't want to be a hypochondriac, but equally very much need his help.
Apologies for such a long-winded email, but I know that you are all so wise and would really value your advice on what to say.
Thank you in advance. xx