hi all im lou, ive had uat, since 2011, ive also had partial thyroidectomy , and have hashimotos,now also fibromyalgia, in the last 2 years i have gone from one tablet per day, to 20+ i dont think we get a fair deal, when i was diag, i was told not to read to much info, but nothing gets done, try this do that, why do we have to fight for what we need, so ive joined up with the campaign below to help all of us get better care please sign and share . wouldnt it be great to know we all helped with improvement of our care xx we need, 100.000 a tough task but we can do it with your help x Dear Friends,
I just signed the petition "Better endocrinological service and treatment for thyroid/autoimmune patients (B.E.S.T.)" and wanted to ask if you could add your name too.
This campaign means a lot to me and the more support we can get behind it, the better chance we have of succeeding. You can read more and sign the petition here:
Thanks, I did sign a while back. Briefly looked at btf-thyroid.org/ wonder is it allowed to be posted on there? I am too tired now to explore. Will look again later in week.
You do know that the late dr Lowe believed that fibromyalgia was due to too much levothyroxine and not enough t3? ( sort of)... Are your free t3 levels good and reverse t3 levels low? If not, why not?
my dr has gave me blood test forms and said my t3 was borderline? in jan, this year, but since then my dose of levo has been upped to 125 from 100,blood test form hasnt got reverse t3 on it, just t3, x rheumatoligist diag me with fm last spring, but ive been on vit d iron , etc, nothing making difference, x
As far as I know, the Nhs don't test for rt3. You can get he test done privately, along with free t3. at either Blue horizon or Genova.
If FM is caused by unconverted t4' then taking more levothyroxine will make things worse. Suggest you have a look at Dr lowe's stuff thyroiduk.org.uk/tuk/relate...
I've previously signed and passed it on to my mum, sisters and friend who aslo have UAT's. I've asked them all to send it on to those they know with this condition as well. Good to see we're all uniting for this cause. x
Just signed. Let's hope that notice will now be taken of the our plight. Also written second letter to MP. Waiting reply. MP did write to Jeremy Hunt & I was in receipt of that reply. Basically about guides etc. However, I pointed out that despite the Guide Lines the system was NOT working for 100's & 1000"s of people. Requested certain tests to be mandatory before medication commenced. Fingers crossed.
at the mo im on 125 , i have asked if i could have t3 and now got the blood test form, would you be able to tell me a list of bt i need, i think shes wrote 21 different ones on their, im now recovering from shingles, and have not been so ill with dif things ever in my life, ive got a group for uat buddies on face book called the crazie train, and a lot of women say to try ndt, or ldn or t3, but ive only ever been given levo, so you have reduced dose and been given t3, what was the difference, in your health ? x
I was originally on 125 levo, and my thyroid blood tests looked 'OK' but because my endo has an interest in fibromyalgia, he offered to try my on the T4/T3 combo. He did say it might not help and that I might find the changeover difficult. As I said he took away 25 of the levo and gave me 20mcg T3 ( not the ratio exchange normally considered to be right). I felt an improvement pretty much straight away. For years I'd had real difficulty with stairs and hills (the power in my legs would just go). Also I had brain fog, was generally weak and always tired. Now I may not be the fittest person in the world, but generally take stairs without a thought, am clearer headed and don't fall asleep with my face in my lunch!
Make sure you ask for a copy of your blood test results so that, if you want further information on them, someone on here can help.
Not sure what test results will persuade your doctor to give you a trial of T3. As I said, mine looked 'normal' just on T4 and my TSH is now very suppressed on the T4/T3 combo at around 0.02 (normal range 0.3-6.0). Some doctors see a suppressed TSH as likely to cause other health problems, but I feel so much better like this.
I also had a number of neurological symtoms which are much improved since I started taking high doses of sublingual B12. I also spent many dull hours researching which minerals and vitamins are relevant to hypothyroidism and fibromyalgia and now take sufficient pills every day to make me rattle. Reckon it's worth it as I feel better than I have in years.
...forgot to add - until I got the T3 I was always sore - pretty much anywhere over my body. When I woke in the morning (and I slept really badly) I was invariably achey and uncomfortable. Far less aches and pains now and my sleep has improved, too.
Just signed as its very important we have more people who can deal with our illness in a way that will get us better. Anyone would think that we have some rare or just discovered illness considering our treatment... D :-0
our treatment is poor , i waited a year to see endo, and i have had a partial thyroidectomy, sp lol anyway he said when a car has a part removed it sometimes will work but just a bit sluggish, a bit of fine tuning and good as new, so i was compared to an old banger, i had to laugh, and thought my god is this really it, so yes im stubborn im not going to just take levo for the rest of my life, and all the other medication, so that why i need you guys to help spread this campaign, sign and share, blog, facebook twitter, anyway you can, thanks again lou x
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