Just had phone call from surgery saying my 19 yr old son's antibody test is not normal and to have another test in 6 months. Not explained

by doc but by receptionist! Dont think this is good enough as I requested test

due to fact that TSH levels low last time and thought he could have hypothyroidism like me. I had to request test rather than doc suggesting it. Will be phoning surgery on Monday to complain and ask for full panel blood test for both of us to include free T3 and T4 etc.(doubt they will agree). Only just had first antibody test and cortisol for first time in 25 yrs and had to request it myself. Thankfully mine came back normal. Very concerned about son though. They dont seem to treat these things seriously enough. Had asked to go on NDT but turned down for this too recently - where do we go from here and why wont docs/ccg listen and give us so called patient choice! Why are we dictated to like this?

JC

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  • Have you taking him to a endocrinologist? I have adrenal disease myself. With hypothyroid. What are his symptoms? I also have a 19yo son. Definitely need to get all his free thyroid hormones checked. Is he having symptoms of low cortisol? A low tsh usually indicates hyperthyroidism.http://thyroid.about.com/od/thyroidbasicsthyroid101/a/confusion.htm I would find a good doctor who will listen to you. Pray you find answers

  • Hi I would ask for a print out, with ranges of which tests they actually did. If not tSH, T4 and Free T3, ask again, or use on ,line. Then find a good Endo yourself and ask/demand a referral. They can say "no" so be prepared for a battle, just in case!

    Best wishes,

    Jackie

  • I am guessing they suggest retesting in six months because your son's TSH is under 10. Sadly this is the criteria. It took me over a year to be diagnosed, it has taken some people 20 years!!

    Your son needs to ask for a copy of results?

  • Then he needs to have his b12, vitamin D tested too. If he has positive thyroid antibodies then how can they say that he is not hypothyroid?

  • Sorry, I am having trouble replying on my phone.

    Seeing an endocrinologist is not always the answer as they are just as adamant to wait until TSH is above 10. Having his free t4 tested is important and you probably know the lab range. As your son is over 18 I guess that he will have to ask for results?

    What symptoms does he have? He needs to write these down in a letter to doc so that they are on his file.

    Having you to support him is so important.

    Sue

    www,thyroiduk.org

  • First thing to do is to get the actual test results and the related reference ranges.

    There are several possibilities for modestly elevated thyroid antibodies including physical damage to the thyroid. And which antibodies were tested?

    You say that he has low TSH? That suggests excess thyroid hormone.

    Hashimoto's often has periods of both elevated and lowered thyroid hormone(s) and TSH over the years.

    I suggest that you collect the evidence (i.e. test results and symptoms), and maybe post them. Then go in and try to discuss - rather than hitting the demand and complaint buttons straight-away. You always have the option of hitting those buttons if the friendly asking for help approach does not work and it is, possibly, better to keep them in reserve.

    Rod

  • Thanks everyone this has given me a few excellent ideas. Will be keeping up the fight - have had to all my life with education, speech therapy etc as 19 yr old has global delay, dyspraxia etc but very clever with ICT. Wont let him do BTEC at college even though he has passed one at previous school - hence the continuing fight!

    JC

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