Is anyone aware of any organised type of protest that might have been arranged by thyroid patients over the years? I ask because I have never been aware of anything and I am heartily sick of hearing what is available on the NHS and the things that are not allowed as far as thyroid is concerned, ie here in Stoke, not a lot is allowed, even less than what is allowed in North Wales to my absolute amazement!
The temp GP did test me for type2 (negative fortunately) and TSH, which was .33 mU/L not T4 or T3 which he says are not necessary. But he has agreed to test for antibodies, gluten intolerance, another check on my Phosphate level etc etc nothing else thyroid related. I took a letter into surgery yesterday saying that I am thinking of self medicating and asking if he would also consider testing me for TSH, T4, T3, and the host of vitamins that are necessary, because I need those results before I can proceed and what the NHS won't test I will have to pay for privately.
I rang surgery asked whether GP had agreed to any additional tests and was told that he had added some to my current blood testing order, but a couple of my requests were for tests not avilable on on the NHS. So I am looking forward to seeing just what I can be tested for on my yesterdays request and what is not allowed.
Out of over 20 years of being tested, taking Levo, etc etc never have been allowed to see my thyroid results, I finally got my history of testing from GP, last week - if you can call it that. Over 20 years and I got a total of 4 results, all that were on my records apparently. I got no indication of what Levo doses I was taking at the time of each blood test, none for any time at all that in fact.
So I am furious again that thyroid, being so abolutely important for the human body - health generally - is just ignored.
Is anyone in any way inerested in setting up some sort of protest online with a view to making it absolutely clear just how many of us are being ignored by the NHS within the uk? How many can get no sense out of a GP, etc etc I would love to set up a flipping march on Parliament, or something big like that.
My family are all saying to me that if I was right and something is wrong with me, then the tests that I have asked for would have been done for me by now. If they are not allowed, then that is my fault for being inflexible and paranoid, trying to find an excuse for the weight gain etc etc which has to be because I am sitting here doing nothing while stuffing my face with cream cakes ('as the girls do in our office here every day and then they complain that they want to lose a couple of stones')! Which is basically what this temp. GP told me last week, walking for an our a day is ok..... though pretty useless and I should be doing Fitt training, especially Burpees, (google them) x 5 per day, stop eating so many calories because at my age (68 in June) you really don't need thousands per day and you can't expect to have good nails, a full head of hair etc etc at your age - the burpees will sort it all out for you and eat less of course!!!!
I just think that they are all winning and we are all having to pay for our own tests, treatment etc etc, being totally ignored for the most part.
We need to make a noise, make the so and so's aware that we are not an odd patient or two who are trying to find an excuse when they sit on their a** daily stuffing their faces!
I remember now why I gave up over 20 years ago and tried to forget all about my thyroid! I am beginning to feel the same way again.