Endo gone mad


For those of you who have not followed any of my posts i was diagnosed with Hashi and Hypo in 2010 and have since been on T4.

Never been symptom free and was referred to local endo dept. A few months ago endo wanted to take me off t4 full stop. No replacement was to be given. I refused as i have a life long condition which needs hormone replacement.

Moving forward to this week my most recent bloods have come back and my TSH is 99.35 (0.34-5.6) T4 is 9.9 (7.5-21.1) Previous bloods a few weeks earlier TSH was 6.

Had telephone conversation with endo this morning who beleives this result could be due to me missing one tablet of t4. which by the way i have not missed any.

I am concerend that one edno wanted me off t4 and the other said one tablet missed could cause such aa high tsh.

I no longer have any faith in either of them and a referral is been made to a teaching hospital in Leeds.

If anyone has any ideas of why my tsh could rise so high in a matter of a few weeks or if you have any other advice please please let me know,

Thanks Christine

19 Replies

  • Was this the endo at the Yorkshire Clinic? Wonder if the T4 itself is the problem? Perhaps not proper quality.

  • No, it was endo at airedale. Not changed levo brand so not sure whats happening,

  • Could be a bad batch.Perhaps you should ask for another brand. I cannot believe one missing pill would have that effect and as you say you did not miss.I was 101 when diagnosed and about to keel over so i hope you get some sensible advice soon.

  • Anythings possible i guess.....such a rise in a short time worries me.

  • yorkshiregirl,

    Can you confirm your TSH was 99.35 ?

  • Yes i can confirm tsh of 99.35..i had to double check this also

  • Just occurred to me that it might be worth your while contacting Sheila at Thyroid Patient Advocacy , which is based in Keighley for advice. I think she may know the Airedale endos.

  • Thats sounds like a good idea...thanks

  • Hi treppie,

    Rang sheila and the first endo i saw is down as one of the good doctors...the same one that was going to take me off levo.

    I remember meeting sheila when i went to see Dr. P a few years ago.

  • Did Sheila have any thoughts on your TSH?

  • Other than it been really high...she asked me if anyone in my family had an auto-immune thyroid condition. I explained i have Hashimotos and she said that is why tsh is high.

    I asked about good endos on the area and i could only have that info if i joined the forum. I remember years ago trying to log on and iv tried again today with no luck.

  • Yorkshiregirl44, the bloods should first have been sent to another lab for analysis to rule out lab error. If the same result was achieved consideration should be given to heterophile antibodies interfering with the TSH analysis. I think its unlikely TSH will genuinely be so high when FT4 is still within range.



    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.

  • Thanks clutter, its the high tsh with t4 in range that confuses me. Why did tsh keep raising when there was no need for it to do so.

    I thought that with such a high tsh my t4 would be very very low.

    They tested it twice according to report, the second result was 100 plus, marked with an arrow.

  • Yorks, as sure as hell missing one dose would not raise TSH like that and you didn't miss a dose anyway.

    There are posts on heterophile antibodies raising TSH falsely in this link healthunlocked.com/search/h...

  • Hi Clutter,

    Iv read the link on heterophile antibodies...wow i found it complicated.

    After reading it im still not sure what it all means other than the antibodies interfere with some results and it comes from handling animals.

  • Yorks, one of the posts in the last link said the Beckham Platform testing was used to determine a TSH result without interference from antibodies. Perhaps you could suggest it to your endo.

    I have to say I think your previous TSH 6 indicated you were undermedicated and your current FT4 is low in range which is consistent with TSH 6 but not TSH >100.

  • yorkshiregirl44,

    Although at present I'd stick with the antibody interference cause as most likely, there is at least one other possibility. That is a TSH-oma. A pituitary tumour that is pushing out excessive TSH. If your thyroid cannot put out any more thyroid hormone, your FT4 will not rise even when your TSH is very high.

    Only adding this to ensure you don't miss the possibility.

  • Yes iv just come across that myself..one thing im not sure about is it says it can cause hyperthroidism....my blood results in Nov were showing a raised t3 with tsh of 6....again very odd results.

  • I can only see it being a possibility if your thyroid really can't put out any more thyroid hormone (or barely any more) than it was with a much lower TSH.

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