I've just phoned the GP's for my test results - the note he put was to not increase dose and test in 3? months time (I can't remember) I have an appointment on Thursday to ask for 'more please' Please can you help me prepare a strategy? or have I got to accept the CFS label?
the results are:
TSH: 0.17 (0.35 - 3.5)
T4 : 13 (8-21)
T3: 4.1 (3.8 -8)
I do feel improved since we have had this lovely hot weather (perhaps I'm a lizard!) but still can't do a full day of normal life and know that once things cool I will feel bad again. I feel as though I am being kept from reaching my potential of normal life.
I also struggle to keep Ferritin above 30 so will also bring this in to the appointment.
I hate having my neck touched, even necklaces are unpleasant to wear.
I read about the pinch test - I gave myself small bruises trying to pinch the skin have tried the Achilles reflex - my adult son did it and said first tap it was normal and then it slowed on subsequent taps.
I have a fast resting heart rate (80+) which has been so all my life, after some light housework it rose to 127 perhaps this is linked to the iron? BP is really good.(like a teenagers according to GP recently) but am worried to mention it in case he reduces the levo.
I feel so anxious that GP will just look at TSH and say everything else is in range so "the computer says no" and don't know what to do next.
I know someone posted on here (to someone else) about a medical test that can be done to prove that TSH is not reliable in a specific individual - something about giving a trigger produced by the amygdala (perhaps) that causes TSH to be produced and they test the before and after TSH. Can any one enlighten me as I cant find it again.
You certainly need to discuss the low in range FT4 and FT4 levels. If they are only looking at TSH and have tested but don’t take account of the frees I would try to get a referral to a knowledgeable endo. That may be very difficult but I would consider every NHS angle and resist a CFS diagnosis as often it is a medically unexplained symptoms diagnosis that will mean testing and actually listening to you may stop. Try to push for the thyroid to be sorted properly before they try to diagnose something else.
If they try to diagnose CFS ME you need to get them to state what diagnostic critieria they are using and what diagnostic code they ascribe. None of this is easy so perhaps take someone along and record the session (you do not have to ask their permission). They should use Canadian Consensus Critieria or International Consensus Critieria not simply NICE, that is out of date and being rewritten currently, or any others that omit Post Exerctional Symptom Exacerbation or PEM. The cardinal sign is all symptoms are much worse after cognitive, emotional or physical effort, not simply unrelenting fatigue of unknown origin. See MEPedia for more information.
Managed to get Endo referral (full reply below to SeasideSusie)
Told him would not accept diagnosis of CFS while ferritin not optimal and T3 & T4 not inline with Prof Tofts article I’m Pulse.