Endo appt a bit of a disappointment

Had my appt tonight, and it wasn't great.

He agrees that my tsh is rising (rapidly, went from 1.58 to 3.1 in less than 2 weeks) and my t4 is dropping (13 to 10 in same timescale), but that it's still in normal range (0.4-4 and 9-21 respectively), so he doesn't think it's necessarily my thyroid, despite my growing list of symptoms.

He's going to test for thyroid antibodies, so that's positive, but I'm worried if they're not there I'll just get written off with chronic fatigue.

Also testing for addisons - wish I had the unexplained weight loss and not the other way around.

So depressed about the outcome, my weight, how I look and how awful I feel.

15 Replies

  • That is totally ridiculous. Your free t4 is right at the bottom of the range and your tsh rising

    He has no right to be an endo

    do be sure louise warvill knows who they are

    so others are not subjected to such treatment

  • I will do. I feel so totally defeated at the moment. Was a private consult, but he's NHS based, so I should have known I suppose.

  • I would not even pay his bill what an ignorant twit

  • Did he explain why, with a rising TSH and a dropping T4, it wasn't indicative of an underactive thyroid?

    When are you having the bloods taken for the other tests? Don't let it go on too long.

    Depending on what is found then, there is ultimately the opportunity to self-medicate, of course.

  • Because I'm still within normal tolerance! That was literally his only reason for saying that it wasn't indicative of hypo. He also says that t4 isn't a good indicator of how the thyroid is and it's health - fairly sure that's not correct?!

    I'm awaiting a call from the hospital to sort an appt for my bloods.

    Can you tell me more about self medication?

  • Well, given that it is the inactive pro-hormone T4 which converts into the active T3, being just a bear of little brain, I would think that knowing what was happening with it, was quite important. Obviously just one factor amongst others to give a full picture, but to dismiss it as not indicative ..........why does he think labs test for it then?

    Just wondering too, whether you are not simply able to attend at the hospitals bloods dept without an appointment, as I do - turn up with my bloods request sheet when it suits me, take a number , and sit and wait ......

    Many of us here have decided to self-medicate in face of intractable GPs and Endos who won't or can't see beyond a TSH result. Some take T4, T3, NDT - singly or in combination. We read up on it, join various other online/Facebook specific interest groups, ask questions here, and then go online and buy our meds of choice. Then we also have private blood tests in some cases, to monitor how we are going on the new meds, and again, post results here for wise commentary on them. Seemples :-)

    (Well, the theory and process is simple, getting meds to an optimal level is of course more of a trial and error thing)

  • It's a private hospital, and as such they don't have, I believe, a dedicated phlebotomist to just sit and take blood, unfortunately. I know what you mean, though, as I had the same set up when we were in London and I was pregnant - take a number and wait your turn!

    Sounds interesting re: self medication. If he does prove intractable, which is looking likely, although I may be being unfair (doubtful; he seemed rather put out that I knew what he was talking about and could quote levels etc to him), then I would definitely go down the self medication route, and so would take on board advice about what meds and where to buy.

    Would you mind pm'ing me what the medication is/where to buy without prescription, please?

  • Certainly will but am going to be tied up today so could you pm me to remind me so it will flag up I have a message and I won't forget :-)

  • Aaargh! You saw a real endonob, Shoopuf. So, as soon as your TSH tips over the top of range and your FT4 drops below, which won't be long by the looks of it, you get a diagnosis of hypothyroid and all the symptoms that he doesn't think are thyroid related will then become hypoT symptoms? What an utterly useless doctor. :x I'm so sorry xx

  • Thank you, Clutter. Will be making sure that when I do get the next bloods taken it is first thing, so they have the highest chance of being abnormal by their standards. Ridiculous state of affairs.

  • He probably specialises in diabetes and thyroid gland as a side line.

    Email louise.warvill@thyroiduk.org who has a list and someone may be near you or it may be worth a journey.

  • He didn't give me confidence as a specialist in diabetes either; my dad has late onset diabetes, and when I said that, and said, "whichever is late onset, is it type 2?" He replied, "Hmmm, yes ... usually type 2."

    Maybe I read too much into that! ;) I have the list, thank you. We're moving to Scotland in 3 weeks, so will be nearer two new endos, who are on the recommended list, but are both also NHS consultants, and now I'm wary that any/all consultants associated with NHS will just write me off as I'm still technically in 'normal limits'.

  • Good luck with the move.

    BTW don't assume a private Endo will necessarily hold a different view, so check and pick wisely.

  • Thank you - this is a true minefield.

  • Having seen your tongue on your recent post - I would seriously look into B12 deficiency....


    This website will tell you everything you need to know and possibly more than your GP or Endo :-)

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