I spoke to my GP last Monday. He said he was glad I was doing ok on the 75mg of levo, I am 3 weeks in now. I told him I want to give it 6-7 weeks and then I will re test my bloods. The call I had from him 3 weeks ago upset me as he said if my fatigue didn't lift he wanted to see me after 2 weeks on an increase of levo and run further tests, which just sent my anxiety racing. So when we spoke last week I was honest with him and told him that he makes me very anxious. I know he doesn't intend to but him constantly chasing me with a needle to run further tests sets my mind racing with worries on a daily basis. I add so much panic and fear every day, because daily I feel weak in my legs, fatigued, drained and easily tired. Even just taking care of my home, my children and pets can wear me out and by 5pm I am fit for nothing. I told my GP that daily as I walk and feel woozy, off balance, fatigue and weak I add fear and often have panic attacks because I worry what is wrong with me because he has never been definitive and said 'it's the hypothyroidism', he is always wanting to run more tests.
I said last year I was ill all year with chronic fatigue and weakness, huge energy crashes after trips to the shops or walks in the park. He never battered an eyelid all year and often would blame mood or anxiety. Then in November he started to realise I had been complaining for a year about this chronic fatigue so he ran a full list of bloods to rule out all kinds of things. He said it was a full MOT to reassure him it was just the thyroid we were dealing with. That came back fine but 3 months later he is asking to repeat all the bloods and test some further things so I was honest and told him I didn't want them repeating after 3 months. I said I had a print out and I was ok, the sodium had been low at 129 but we re tested it 9 days later and it was 138. He said he wants to repeat that again even though it went back up. Potassium was 3.4 (range was 3.5-4.6) which at the time he said was fine and he didn't suggest a re test. On the day of the test I was having panic attacks as I was terrified of blood being taken and got myself in a tizz so couldn't stop running to the toilet to wee lol! He said that would have been the cause of the low sodium and potassium but now wants to repeat them. He said my random sugar was 8.9 so out of range but the HBA1C was perfect yet he wants to monitor my HBA1C every 3 months as he is worried my fatigue is due to high sugars but it obviously was a one off, as my HBA1C which measures sugars over 3 months was low and good. I pointed all this out to him and he said he would like to repeat them and all the others despite them being good and if all come back ok he will refer me to a general medical consultant at the hospital. I asked him why, what would be the point in that. Isn't it just hypothyroidism causing my symptoms? He said the consultant could run more bloods, probably the same ones he has done and then diagnosed chronic fatigue syndrome which it looks like I am suffering with maybe before the thyroid condition started. I refused and said I was anxious and agoraphobic from this last year of hell and I couldn't go to hospital to see a consultant right now and especially not for something so pointless!
He has agreed to give me the 6 weeks on 75mg then test my thyroid which I do privately and then if that shows it's come down and my fatigue isn't lifting he will want to see me to run more tests and refer to a general medical consultant.
I am having therapy for my anxiety and even my therapist today said my GP is a huge cause of my anxiety, he should be able to say that the hypothyroidism is the cause of my fatigue and weakness, aswell as deconditioning as I have been pretty much stuck at home the last year since this ill health began. She couldn't understand why he keeps wanting to run more tests when I've had so many in the last year. She said it's no wonder daily as I walk around my house feeling so weak and fatigued I add so much fear and anxiety to it, I can't accept it because my GP worries me so much and plants doubt in my head.
I have sent my cortisol results to my GP and suggested the 24 hour urine test so he can rule something else out as the results were slightly out of range on all 4 saliva samples. I haven't heard from him since so maybe he doesn't want to do any further testing for the cortisol.
So I was honest and told my GP how anxious he makes me and that I didn't want further testing at this time and I just wanted him to confirm it's just the hypo as all the tests he did were fine and the ones slightly out of range were also ok if you look into the reasons behind them. I am sure he will be chasing me with a needle again in 3 weeks demanding I repeat them plus more, if my fatigue hasn't lifted on the 75mg of levo.
I had a second opinion from another GP there last year and he said when my TSH was 6.8 that I didn't even have hypothyroidism because my antibodies were negative and that I was looking for things to worry about. His words were 'we don't know what to do with people like you Julie, with clear normal bloods and chronic fatigue'. Basically stamping me with the CFS and hypochondriac stamp. I then went back to the GP I see now and he diagnosed subclinical hypo. At the time I was under huge stress, I was attacked by my brother 4 years ago, lost my grandmother the same year and my mother and sisters cut me out as I wouldn't forgive my brother. My son was then bullied in 2015, he became suicidal and struggling to leave the house to go to school because of the bullying. It was awful and then I became ill with chronic fatigue and weakness. My GP tried to blame stress for raising the tsh and he was the one who said I was just looking for things wrong with me despite my TSH being 6.8, then 7.5 and 9.28 all within a few months.
My TSH had come down to 2.6 and FT4 was around 19. Last test 3 weeks ago showed TSH had risen again to 5.8 and FT4 dropped to about 17. FT3 is always around 5. I don't have positive antibodies. My TSH at it's highest was 9.28 last May and that's why my GP put me on levo as I was struggling with severe chronic fatigue and weakness.
I just thought I'd update on the GP situation since I last posted about him wanting to run tests and the worry it was causing me. It really is no wonder I daily doubt I have even got hypothyroidism with one GP saying I can't have it if I have no antibodies and the next one treating it yet always chasing me with a needle to test for something else lol! If i didn't laugh I'd cry.
Julie
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update from endocrinologist 
