Hi ! Long story short, I was diagnosed with Graves Disease in 2018. There was a time where the levels where back to normal and I weaned off my med. But I got my first relapse last year, although now my levels are good (per April 2022) and only require 1 x 5 mg Carbimazole.
I complained to my Endo that I still feel awfully tired, still ongoing hairloss and headaches. So she sent me for a blood test but I couldn’t see the result until now. ( I have asked the UHS to get me the test results but then they can’t see it in the system). I know the test results are there as when I consult with GP for headaches only (she only want to talk about one thing…). She saw the result and mentioned low cortisol ( I think it was 190 something).
I managed to get synachten test last Friday, they told me my result is good as my response to the synachten is good. The thing is I have been feeling sick and very tired since last Saturday. I had to take regular time off interval from work. Any advice ? i am so frustrated right now.
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Setting up and arranging access to records will help. You need to see where you levels are and track them yourself. Hair loss and headaches can be a hyper or hypo symptom.
For full thyroid function you need TSH, FT4 & FT3. (Doctors focus on TSH) carbimazole should be dosed by FT4 & FT3.
Thyroid antibodies TPO & TG antibodies. To confirm Graves you need TSI or Trab tested? Was this done often drs treat all low TSH as Graves.
Also important to test folate, ferritin, vitamin D and B12.
Private blood tests can be arranged via post & finger prick sample at home is GP refuses to test everything.
Cortisol have a time range eg morning should have higher results and levels decline through day.
You had a further test to how you respond to ACTH (synachten test). Doctors will say “good - fine - acceptable- normal” for any result in range even is just within range. Get a hold of copy of results & check how good they are.
The Graves was confirmed years ago, when I was not in the UK. During that time they tested the TrAb, TPO,TSH and everything including liver function.
I was doing quite well until January probably where I feel that my fatigue isn’t going away at first I put it as due to the winter season or something.
Do Vitamin deficiencies and etc you mentioned still expected even when the TSH and T4 level is good though? Tbh I am really frustrated with everything going on here
I know my vitamin D was low, I have been supplementing with 1000iu even though the GP prescribed for 800. I have told the GP and endo about it and they never checked even though I asked.
I asked again when she finally relents additional blood check for my fatigue and hairloss. Should I be concerned that my morning 8.45 am cortisol is 190ish?
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Latest results - confused!
Really confused now!!
Do I need Thyroxine
Surely I am hypothyroid? Very frustrated
Confused
