Hi everyone, I’m new on here, not sure if i am the right site or not , apologies if i am not.
I was diagnosed with addisons 18month ago, i experience fatigue( cfs) all over pain, fainting spells, extreme queasiness and really bad heads which always occur at their worst in the afternoon , stomach problems with feeling of sickness and nausea,
My Gp did a cortisol test 18 month ago with relation to theses symptoms, the test came back extremely low and i was told i most likely had Addison’s and was put on steroids (hydrocortisone) but this was needed to confirmed by a Synacthen test, the first was bodged as they didn’t tell me to stop take the meds , this test came back borderline, so I’m guessing that if i hadn’t taken the meds it would have still been low, i had a 2nd test 2 week later under correct conditions and that test also came back borderline , then i was told i haven’t got Addisons as a result was taken off steroids , till this day i have not had an explanation as to why this is , i feel like I’m been shoved from pillar to post by medical professionals, I’m still feeling as bad as ever and feel at a loss with trying to find out why i feel as i do , can anyone with experience out there or sufferers give me any clues as to what it may be and why the tests can go from one to another .
Thanks
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Freddy1000
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For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
has a description of all the tests that an average endocrinology department in a hospital might do in the UK. It describes the preparation to be done by the patient (if any), what equipment the hospital needs, how the test should be carried out, timing, and how to interpret the results.
For the Short Synacthen Test (SST) see pages 68 - 70.
Please also read the "Important Note" at the end of the paragraph on page 2.
If your SST test was not done according to the guidelines in this document you could have grounds for asking for the test to be done again.
The fact that you keep fainting points to the fact that you may well be adrenal insufficient. Sadly many Endo's don't have a good understanding of pituitary/adrenal issues so you need to be referred to one that does. If you'd like to message me with where you lve I can suggest a centre of excellence for these issues. I have secondary adrenal insufficiency caused by a pituitary adenoma so have quiet a lot of knowledge about it. It's worth looking at the Addisons website. If you are on Facebook join the UK Addisons info & support group as there are a lot of knowledgeable people who can help.
Any success yet? I was diagnosed with primary addisons in 2013. I’ve just joined this forum & put Addison's disease into the search box & your thread came up.
Ask your Dr/endo to test your blood pressure laying down & then standing up.
Definitely ask for a blood test for adrenal auto bodies.
There is another test that is very thorough & looks at the day curve of cortisol, multiple tests in one day, a whole day of waiting, but it will give a very clear picture of what’s going on.
Are you tanning anywhere?
Are you losing weight? Off food?
I was so ill before being diagnosed, I could hardly stand...and they still kept denying that I had Addison’s disease.
It’s absolutely imperative that you keep pushing for a diagnosis. Addison’s disease is life threatening. I nearly died twice before they would take notice!
I know this is an old thread but how we're you finally diagnosed as I'm in the same boat. I have hasimotos thyroid disease. My grandmother had thyroid disease and addisons but no one will listen. I had a test a few years ago which was borderline and they just dismissed it even though it was very low
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