Telephone conversation with my doctor!!

Doctor: I am very concerned with your low TSH level. Have you increased you medication?

Me: Yes by 25mcg (to 75 mcg) and I now feel well. All my symptoms have improved and  don't want that taken away.

Doctor: I see what you are saying, but we are taught that the TSH level must be in range and yours is well below.

Me: But my FT4 is good and my FT3 is still at bottom of range.

Doctor: Your symptoms could get worse. You can continue on your current dose but you MUST have a blood test every 3 months so we can keep an eye on you. You could end up over medicated.

Me: I don't feel over medicated but yes, yes of course I will have regular blood tests! (under my breath "no way!")

Thank you all for your help and advice which gave me the confidence to stand up for myself and ensure that I don't suffer continuing symptoms unnecessarily through my doctor's ignorance.

26 Replies

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  • Did he know what FT4 and FT3 were?

  • Yes she did. She had blood test results in front of her I guess.

  • TSH LOW compared to what? Compared to the grossly wrong "reference range"? Compared to research results below:

    endocrine-abstracts.org/ea/... 

  • It was suppressed at 0.18 but I've read in the Dr Toft article that 0.20 is fine.

  • The reference range fro the lab was 0.30-4.20

  • Researchers I linked found that 0.04 (zero-point-zero-four) is safe. Best endos here in Finland say even suppressed is often needed in the 2nd stage in T4-only medication (raising T4free to the upper limit of reference range, but avoiding hyper. Third stage is adding T3)

  • Thank you for the reassurance.

  • Hi 0.18 isn't considered suppressed.  I think it needs to go to 0.03 but not too sure.  My tsh is 0.01 the last time it was tested, but I am on t3.  My doctor was fine with it.  Hope that helps.

    Jo  xx

  • I agree with another poster that 0.18 isn't suppressed. I'm not sure what the specific figure is, but I'm thinking more like 0.05,an order of magnitude lower than what you're talking about. 

  • Hi eannj, I too am expecting the same conversation with the GP tomorrow (not my usual one) My TSH has been at 0.02 since January 2015 apart from one test when it was 0.07, my FT4 is usually between 17 and 20  and FT3 between 5.2 and 5.4

    I will be refusing to lower my dose as I feel well, it has taken me a good while to get here and I don't want to go backwards just so my TSH is within their range. Well done for standing your ground.

  • Great news! The doctor was a little worried about my TSH of 0.02 and suggested that I reduce my thyroxine by 25mgs. I pointed out that it has been around this level for the last 12 months. I also told her that I feel well on this dose and referred to my FT4 and FT3 being in a good place. She agreed that I should stay as I am but have bloods checked every 6 months instead of the usual 12. 🙂

  • I'm having the same call on Monday, great to read of your gentle assertiveness...

  • I could have said a lot more. I had written it all down in advance so I didn't forget anything. However she didn't really give me a chance - she obviously couldn't wait to get off the phone and was not really listening to me. Frustrating but she is not my normal doctor, who is a young man probably the same age as my son who I bullied into giving me a prescription for the higher dose. Unfortunately he is on long term sick leave at the moment

  • Good for you ... Listen to yr body !!! 

  • and blood tests reveal what is  sitting there in the blood and not what is in the cells- cells don't get considered now do they- I have in  my blood - adequate vit d and b 12 but after a gene test I found I don't absorb either in the cells  even tho  the blood says yes , well that is no good whatsoever!

  • Interesting. My daughter has terrible absorption problems especially with iron. I wonder if she's ever had a gene test! Thank you!

  • I did 23and me

  • I improved my iron absorption enormously when I went gluten-free. It really is worth trying. My iron is no longer low, and this is the first time in my life this has happened.

  • I am largely gluten free but my problem is probably that I'm vegetarian

  • My sister battled with malabsorption of iron for years, and was on a ridiculously high dose of Levo, about 250/300mg sometimes. Turned out she's coeliac. iron is fine now and her Levo dose is about 150mg

  • I think you have distressed you r youngdoctor...

  • So funny Eannj this is the identical situation I am in. A young doctor standing in for my regular Endo gave me a prescription for NDT a year ago. I think my regular Endo was mad at him and now, a year later, I have to renew my NDT script and she is threatening to lower my dose. SOooooo I am on the road again looking for another doc.

  • I am suppressed, TSH is 0.05 I feel great and my endocrinologist is happy with this, T4 and T3 top of the range.

    I haven't found any evidence to worry about this and I trust my doctor and my symptoms.

    Good for you that you are feeling confident to stand up for yourself! Hope you continue to improve.

  • If you go for a blood test don't take your thyroxine for 48 hours and have the test first thing in the morning, fasting. That way the TSH will probably be a bit higher and your doctor will be spared the stress of knowing her patient is feeling well. After all, keeping the doctor happy is what it's all about!

  • Your last comment made me smile. :)

  • There is a postscript to my story. Yesterday quite coincidentally I met a physio who is a personal friend of the doctor. She told me that the doctor 'has a thing' about thyroid patients, but also that she is retiring in a month as she is so fed up with the stress of her job!! Hopefully my next doctor will be more sympathetic - but I'm not holding my breath!

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