Endo update: Hi all,saw endo 2weeks ago , started... - Thyroid UK

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Endo update

clubby29 profile image
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Hi all,saw endo 2weeks ago , started ok he wanted to know how I felt what I had been taking supplements as well. I then gave him my private blood test and cortisol test results (on previous post). My tsh is suppressed so I then got a 15 min assault about how tsh is the only way or you will die of a heart attack, how internet support groups will latch onto any hope,how some Maverick Dr's in the past have been struck off for endangering patients,how saliva cortisol tests are a waste of money and tell you nothing,how he will not prescribe t3 or ndt. He did tell me that I have Hashimoto thyroiditis but there is no link to gluten problems. So I then threw in my joker question: so why do I still feel like I have a 2year old hangover most days, his answer was: we just don't know it is an area that needs more research, the contradiction is beyond laughable.

So today comes an appointment to go for an adrenal stimulation test, which I guess will say they function fine for the 20 mins I'm there because they haven't told me its a 24hr test. It's GF new year for me,1 thing at a time.

Thanks to all for help

Merry Xmas to all.

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clubby29
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Julia1234 profile image
Julia1234

Doctors need specialized training in thyroid disease ..... It's hard to find a dr that is humble enough to want to learn and admit he needs to learn...... My dr is amazing here in Alberta Canada ...... But I went through years of hell trying to find a dr that was courageous enough to put me on NDT and then strictly T3....... For anyone suffering.......... Hang on...... Be proactive ...... Don't lose hope..... Keep interviewing dr's and you will find a dr willing to treat your symptoms and not go by that stupid TSH scale........

shaws profile image
shawsAdministrator in reply to Julia1234

Let's hope more doctors will be open to prescribing other thyroid hormones when the patient is clearly not recovering on levo only. Also, relying only upon the TSH to diagnose is a disaster.

There is an English Endo who said in his speech to the AEA (I think in 2013 or 14) that if the patient is still complaining and is disatisfied with levothyroxine and the TSH is in range that they are actually suffering from a "Somatization Disorder". They do have a cheek to put another 'handle' on your illness and that we now have a mental disorder rather than a lack of hormones. It goes to show that they know absolutely nothing about thyroid hormones and their function.

Clutter profile image
Clutter

Clubby29, If your endo's methods worked for everyone then no-one would turn to internet fora. More enlightened doctors advise patients to use fora to educate themselves on their condition and understand how valuable patient-to-patient support and advice can be.

The recently updated Rotterdam Study finds no association between TSH and atrial fibrillation.

press.endocrine.org/doi/abs...

ThyCa patients have TSH suppressed to reduce chances of recurrence. Why would they do that if suppressing TSH means we will die of heart disease or stroke?

Many doctors are convinced that gluten-free is only necessary for patients with coeliac disease but non-coealiac gluten sensitivity is common and there may be benefit from gluten-free. I don't know why doctors are so dismissive about trialling dietary changes. If they work, great, if not, gluten can be reintroduced.

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

shaws profile image
shawsAdministrator

Let's hope the New Year will be kinder to all those who are still suffering and they can find helpful doctors to guide them to good health despite the guidelines.

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