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Hughes Syndrome APS Forum

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Referral rejected

NBtired profile image
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I have a diagnosis of APS. I have been struggling lately presenting with thyroid type symptoms. My gp did blood test again- which came back normal again. She agreed to refer me to an endocrinologist for a second opinion but the referral has been rejected. I don 't know what to do next. Feel so upset that they won't even offer me a one off consultation! Any advice/ suggestions please?

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NBtired
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MaryF profile image
MaryFAdministrator

It is awful this sort of attitude, unfortunately GP's and Endocrinologist stick rigidly to the TSH tests which are shown to be unreliable. Please become a member of Thyroid UK on this platform, their charity pages are good as is the forum. You may have to ask your GP for a trial of an appropriate drug by presenting him or her with all the various symptoms you have. MaryF

NBtired profile image
NBtired

Thank you both. I have asked to speak to the person who "rejected" me. I think I should have an explanation. A rheumatology consultant that specialises in APS gave me the diagnosis. I am due to see her in January hopefully. Maybe she can help!

I am sorry to read your post, I too am in a similar position. My thyroid test has come back as normal therefore there is nothing to be done. I am going to join the Thyroid forum. Good luck! X

bathouse profile image
bathouse

Hello, I had a sub total thyroidectomy and even though I had every symptom of Hypothyroidism going I was refused treatment as my results were in "Normal ranges" One GP said " We dont deny you have had thyroid problems in the past, all fine now!!!!!!!!" The endo at my local hospital refused to treat me as my results were within normal limits, I had to find a Dr privately (via TPA UK) and he started me on thyroxine, I have improved greatly on thyroxine (around 80%) I could not live without it, My T4 has to be in the upper end range of normal to feel any better.

The GPs generally just go on results only and the tests are not accurate.

I have this year developed "MS" type symptoms, Neuro says not MS and now under ST Thomas to see if it could be APS. Its not an easy road fighting all the time when you feel so ill......yet look fine!

Please do not give up, I had to fight hard, was told I was depressed, The wonderful Dr Skinner (private endocrinologist) really did save me from feeling awful, thank goodness for Drs like him.

ledlegs profile image
ledlegs

I too present with symptoms of thyroid problems and am under an APS consultant at St Thomas's hospital in London. They did a thyroid test which came back in normal range so say it must be ok but I'm convinced it isn't so what can you do? They are now testing me for diabetes but I'm certain I don't have that and will find out when I go back in January. By the way the Lupus unit at St Thomas's IS moving to Guy's in December, so will have to go there in future which is more awkward for me to get to especially as I am partially disabled and half the stations don't have disabled access.

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