Dr Wants to reduce my Thyroxine further - aghh

In January my T4 was 15 (range 9-21) and TSH suppressed (<0.01, range just states mU/L). I reduced my Thyroxine from 125mg plus 10 mgT3, to 114 Thryoxine per day (taking 100mg daily, and the 25mg 4 times per week instead of daily) continuing the 10mg T3. I did this because I had some palpitations, and to see if it made an impact on TSH.

Following the doctors comments in January about the suppressed TSH I then reduced the Thyroxine to 110.7 per day, to see if it made any difference (25mg 3 times a week). But actually I don't feel quite right and my stamina is reduced. Even worse when I reduced the dose further. It seems a small change in dose can have quite an effect. I have not seen latest results yet but a message from surgery - doctor wants to reduce Thryoxine to 100mg per day. She is like a terrier with a bone that won't let go! Says TSH has been suppressed for years and they need to consider osteoporosis risk.

Have made an appointment for Tuesday with the other doc and asked for a copy of my results. I have the copy of the Dr Toft Pulse article. Hopefully I can persuade her that I do not need to keep dropping my dose until I can't get out of bed. Am not exactly a fireball of energy at present- my husband says I am always tired, does that tell you anything? Have put on a few pounds as well, is that a result of the reduced dose/lack of energy/ less exercise?

Actually the GP I am seeing is quite good, perhaps we can work in partnership to address this issue - will keep you posted!

Been reading all the helpful posts here, lots of good advice

Val

15 Replies

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  • Please see Shaws and Janeb's responses on this thread regarding osteoporosis risk. It is not true that you are at risk of osteoporosis and you are actually more at risk if you are not sufficiently medicated. thyroiduk.healthunlocked.co...

    Also, TSH is often artificially suppressed for many other reasons. There was also a paper released recently that demonstrates that the TSH/T4 relationship does not work for hypothyroid patients. It is fine for euthyroid patient and somewhat for hyperthyroid patients once things are under control (as long as they don't go hypo) but way off for hypothyroid patients and that TSH should be ignored.

    I have a low TSH even when my T3 and T4 are also low. I believe this is because of my adrenal insufficiency (very common in thyroid patients).

    If I can find the paper about TSH not being a good measure for hypothyroid patients I will post it for you. Please use the information supplied by Shaws and Janeb too. Perhaps she just needs educating. It's not her fault that she is misinformed about these things. Hopefully with this information you may get the treatment you clearly need :)

    Carolyn x

  • Here's Rod's blog where he summarises the paper I was talking about :)

    thyroiduk.healthunlocked.co...

  • Great thanks a lot Carolyn

    Val

  • Have you been tested for FT3? It maybe that your T3 is too low still and you may be better increasing the T3? just a thought...

    Mary

  • Hi last time I had a total T3 test and it was 1.5 (range 0.9-2.4) but is this the right test? It is not free T3 I don't see that I had that.

  • I only began to get well by dropping T4 gradually and increasing T3.

  • Me too

  • thanks Shaws. How did you know to decide to try this route?

  • I was grateful when first on levo (as I had been undiagnosed previously) but after 4 months I got more symptoms. Stiffness, joint/muscle pain etc. Sent to neurologist and told that when I got medicated better I should get well. I didn't. I then developed severe palpitations/tachycardia had trips in ambulances, ECG's, Cardiac Dept prescribed propropanol (didn't know then it interfered with the uptake)' When I told my GP Levo was making me more ill, he said that to prove it I would have to stop taking it (I knew that was a ridiculous reply) My hair began to fall out and Endo let me add T3 to my T4 and it made such a difference.

    I decided to stop T4 for one week and take T3 alone and began to feel so much better I stopped for 9 weeks but knew I had to start it again unless the T3 was withdrawn altogether - palps returned. I also knew I wasn't taking enough T3.

    So , through Thyroiduk.org I got the address of a private doctor, took T3 alone then went on to Naturethroid as well. So, feel fine, sleeping well, I take 1 T3 and 1 gr Naturethroid.

  • My endo tries to reduce my meds every time I see him, I just keep repeating, 'No thank you, I am fine on the dosage I'm on'. Till he drops the idea!! Always remember that to alter meds a doctor has to get YOUR agreement!!

  • Well said.

  • Your T3 could well be suppressed because you are taking T3 and so your GP must request a T3 test and say patient taking T3. That way, the lab may well come back saying suppressed but your results are okay.

  • Thanks Muffy. I wondered if it was the T3. I did not ask for a T3 test this time. I think they usually ask what dose you are on but not sure if the nurse got it right this time. I'm a bit stressed about the whole thing and gave up trying to explain my dosage to her. I had a test for Total T3 Nov 2011 which came back 1.5 (range 0.9-2.4) and I had definitely told the nurse the right dosage but it did not seem to make any difference to the recommendation.

  • Next time, if you get the opportunity, ask for an FT3 test.

  • Thanks will do. I don' t think I have had that one, just FT4.

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