I am newly diagnosed graves and have begun seeing private consultant as I felt so bad and could not wait for nhs appointment which is still to come!
Consultant has started me on carbimazole (also taking propranolol) and wants me to have blood test for tsh ft4 and ft3 just before my next appointment ( 4-5 weeks since starting on carbimazole). The problem is that I will be touring in South Wales during this time with 2 fixed bases - laugharne and cardigan. There are no nearby clinics for blood tests.
Blue horizons have suggested self test skin prick but I am nervous about getting enough blood. Even seasoned professionals struggle to draw blood from me.
I have asked medicheck if I can book a nurse to take blood at my hotel but they don’t think this is possible.
Any thoughts or advice?
Btw....can I just say how wonderful you guys are with your support for each other. I wish I’d known about this forum a long time ago!
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Meringue4
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If you want another head start I suggest you dip into the Elaine Moore Graves Disease Foundation website and read around this poorly understood and badly treated auto immune disease.
I hope you are well enough to enjoy touring around Wales and can arrange the blood test as detailed above.
Do you have there your initial TSH, T3 and T4 readings at diagnosis ?
You should also have there a reading of either a TSI ( a thyroid stimulating ) or TR ab ( a thyroid receptor blocking ) over range and positive blood test result and this proof of diagnosis which medication / dose is to be prescribed.
As you will see, these two antibodies are the extremes opposites ends of each other and can vie for control - so you may well feel extremes of symptoms - and there is also a middle ground where they tend to offset each other - and you feel relatively normal, for you.
The anti thyroid drug should be at a sufficient dose to block your T3 and T4 rising any further and slowly your symptoms should reduce with your T3 and T4 levels falling back down into range.
If with any issues with your eyes, please ensure all potions, lotions and drops and gel are Preservative Free. tedct.org.uk
thyroiduk.org - the charity who support this forum and where you'll find everything you may need to use in helping yourself understand how the system is meant to work.
Many thanks for this information. Knowledge is definitely power! There is so much to learn and I am gradually absorbing it bit by bit over time.
Yes, my wonderful private consultant did a thorough blood test testing all those things that you mentioned in your reply to my post. I think my Graves must be mild compared to many but nevertheless had a profound effect on my health. I felt that I was suffering severe stress from my job and eventually handed in my notice. I now know that the pounding heart, shaking, extreme anxiety, inability to sleep and stay asleep, increased hair loss, osteoporosis diagnosis, one stone of weight loss, bulging eyes were more than likely due to Graves.
I feel well supported by my consultant but, unfortunately, cannot afford this long term and need to swap to nhs.
Many thanks for your comments and advice (and I mean this to everyone on this forum). It is so good to know that this place exists when you feel overwhelmed and need clarity.
If you contact the TED charity as mentioned previously they will signpost you to NHS outpost clinics, hopefully within your area and where you may well receive both endocrinology and ophthalmology specialist help in the management of Graves Disease.
It's likely a faster way and cutting some corners, which you can do for yourself.
Every patients journey with Graves Disease is unique to them, which makes this a difficult disease for medical professionals to understand as no two cases are the same.
Graves Disease is said to be life threatening if not medicated because it attacks the thyroid which is a major gland, the body's engine and responsible for full body synchronisation.
Hope you are feeling a little better and that the AT drug has done it's job and your symptoms less troublesome.
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First time post - desperate for some help/advice
