confused

A couple of months ago I was put on levothyroxine as my FT4 level was borderline low at 8. After 6 weeks of being on it, I was feeling great. However my TSH hadn't come down enough so I was referred to an Endocrinology specialist. He did lots of blood tests. My FT4 was 12.7 and TSH was 0.77. My cortisol,LH and FSH were low so I was told to stop levothyroxine for 6 weeks then have repeat blood tests. I've felt the worse I've ever felt stopping the levothyroxine and am hoping they put me back on it.

Yesterday, I missed the consultant's phone call but he left me a message to say that he will be sending me a letter and everything looks fine. How can everything looks fine if I still feel this ill or was he investigating secondary hypothyroidism as the other results were low also? surely I can't be cured. I'm so confused.

please someone shed some light for me xx

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19 Replies

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  • Hiya, if you post all your results on here, people will be able to take a closer look to see what might have been going on. I suppose you might just have to wait for his letter for confirmation of what he meant.

    If you have autoimmune hypothyroidism, your results can go a little up and down at first and the only way to check this would be to have the thyroid antibody tests. LH and FSH can be low/high at different times of the month so will depend on what time you took them or if they are too low and lots of different things can effect these - I've had these go low from time to time but has never been anything serious in my case, normally in response to other health issues - such as when I'm low in thyroid

    Low cortisol maybe needs to be looked into further a but I don't know much about this area as others here. Low cortisol is often related to hypothyroidism.

    Unfortunately, if they have determined not to investigate further, the only option would be to pay to retest yourself. But many people on here do as you can check things they wouldn't to get a clearer picture. For example for most of the thyroid labs you need and possible nutritional deficiencies, a general price for this test is £99 but I don't know how much on top for cortisol.

    Better advice might be given if you post your blood test results :-)

  • I can't get my head around this one. Your TSH hadn't come down enough, so she sent you to an endo? Why didn't she just increase the dose?

    Did your endo say why he wanted you to stop the levo for 6 weeks? Actually, they do love doing this. They appear to treat their patients like guinea pigs, just for their own amusement. Either that, or they really, really don't have any idea what they're doing. What is he expecting to happen in six weeks? Are the six weeks up, yet? Have you had the follow up blood test? Without that test, he cannot possible know if everything is fine - or, he was just talking about the blood tests he did when you saw him. I very much doubt you can be 'cured'. There is no cure for hypo. Have you had your antibodies tested?

    Remember, when you got for your next test, go as early in the morning as possible, and fast over-night. That way, you will get the highest TSH possible. And, that's what you want, because that's all they seem to look at!

  • So the first set of bloods which showed my FT4 at 8,I never got to see the other results like TSH etc. So my Dr started me on levothyroxine then did another set of bloods a month later and told me that my FT4 had come up but not the TSH so referred me to an endocrinology specialist as he suspected a pituitary issue. I had an antibody test at the start and that was fine. I was on 50mg of levothyroxine for around 2 to 3 months before seeing the Endo. When he did the bloods, this is what the results were:

    TSH 0.77

    FT4 12.7

    FSH 3.8

    Lh 3.8

    Prolactin 212

    Cortisol 191

    He said that the TSH is within the low normal range which is most likely consistent with levothyroxine treatment. He then wrote that the cortisol,fsh and Lh were on the low normal side so to stop levothyroxine and do bloods 6 weeks later.

    I've since had these blood tests and am awaiting results. He left me a voicemail to say that he's reviewed them and everything looks fine.

  • OK, so your doctor doesn't know very much about thyroid, does he. For a start, he should have waited six weeks before testing, and then he should have increased your dose by 25 mcg. It's rediculous leaving someone on a starter dose for all those months.

    So, you have no idea what your TSH was when you were diagnosed? If you had a pituitary problem, the TSH would have been low, in which case, it's very doubtful your doctor would have diagnosed you, because he doesn't even seem to know anything about primary hypo, so he's not likely to know anything about secondary.

    But, you've confused me, now. He said the FT4 had come up but not the TSH? You wouldn't expect the TSH to come up on levo, you would expect it to go down. So, if he sent you to an endo, because the TSH wasn't coming down, then it must have been high to begin with. In which case, it wasn't a pituitary problem. Don't these doctors know anything! :(

  • sorry I think he said the FT4 went up but the the TSH hadn't come down enough.

  • OK, so it must have been high to begin with, and all he had to do was increase the dose - one wouldn't expect it to come down much on 50 mcg - so, it's not secondary hypo, it's primary. :)

  • so do you think they were just ruling out secondary hypothyroidism before they officially diagnose me with an under active thyroid? I hope they put me back on the levothyroxine.

    Thanks so much for your help xx

  • I have no idea what they were doing. I rather think they don't know themselves. No-one in his right mind would have stopped your levo like that. :(

  • me neither. I feel awful being of it x

  • When do you see the endo again?

  • As far as I know,I'm not seeing him again. On the voicemail he said everything looks fine,take care. I should get the letter this week but I'm so inpatient. Just want some answers xx

  • Can't you ring your doctor and ask him? Surely he would know something.

  • No because it's a different hospital trust so they can't access the blood results. so stupid xx

  • It certainly is! Well, as your GP got you into this terrible situation, he should do something to get you out of it. Ask him to do some tests.

  • Yes I've got to be assertive and demand more tests. I'm not settling for feeling likeep this for the rest of my life. They just palm me off with antidepressants all the time xx

  • Yes! That's the spirit! :)

  • Thanks. Will keep you posted x

  • so I spoke to my Gp today and she said to go back on the levothyroxine at 50mg until I receive the letter from the Endo as I'm feeling so crap. She said my TSH has always been in the normal range but wouldn't tell me what it was. It's only been my T4 that's been low.

  • You can get all your results printed off - they are not allowed say no so put your foot down - it might be helpful. The endo should always send his findings to the GP who referred and where you're registered at too so I don't understand that? :-)

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