I need advice again. My last post here was approx 2 months ago. First of all, I can't thank enough those of you that replied with so much helpful advice before as it gave me the ammunition and confidence to speak up for myself on the Phone Call appointment the following day 😁 I actually got quite fired up and almost started to cry but I'm so glad I spoke up, was assertive. I said that it's wrong to medicate purely by looking at my TSH results. I said despite the gradual reduction of my old dose over last 18 months of 125/150mcg to only 100 daily, my TSH was still 0.01 (0.30 - 4.20) but now my T4 and T3 had reduced much too low. I stressed that the T3 was the important hormone to feel well. My husband then came onto the call. He was angry too. He said firmly, "I know my wife, I know her body and she's definitely not right!!" So thank goodness she agreed that "well you've given it a try Mrs RXXXXX" (yes 18 months of my life feeling more tired, bloated, fat, dry hair.. ) and with relief she agreed i could raise my dose to 125 daily (old dose was 125/150. Only this past week I've noticed a slight improvement in myself. Little things, that should be normal to someone else.. eg been able to plan my day better, had the mental ability to achieve more. Hard to explain.. but im sure you all get what i mean. It's still taken me all day to get round to sending this post so I'm hoping you clever people are still awake!
I just need to ask do you agree my T3 and T4 could/should be higher? I'd like to go back to 125/150 levo. Never felt perfect, but GP actually said they don't prescribe T3, only for people who have come to UK from America, for example, who previously been on it. She also said but you have good levels of T3.. think she meant previously, before she (and Endo) got me reducing dose..
So below are my results from July 2022 followed by my new ones from September 2022. These both are the only ones I've ever done early morning without having taken my Levo beforehand!! 🙏
JULY 2022
TSH 0.01 (0.30 - 4.20)
T3 3.5 (2.4 - 6.0)
T4 18.1 (9.0 - 23.0)
SEPTEMBER 2022
TSH 0.01 (0.30. - 4.20)
T3 4.7 (2.4 - 6.0)
T4 18.4 (9.0 - 23.0)
Kindest regards
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CosmicGirl61
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Certainly your FT3 should be higher. It's not much over 50% through the range, and that's not very high for someone taking exogenous thyroid hormone. You don't actually convert very well, so your FT4 is at quite a decent level. Any higher and you could start converting to more rT3 than T3, which is not what you want. I'm not convinced your doctor is right about only prescribing T3 for people who have come from America! That sounds a bit far-fetched to me. Never heard that before, and it sounds like an excuse made up on the spur of the moment to fob you off. The criterea for having T3 prescribed should be evidence of poor conversion, and that you have. But, maybe that is the policy in the area in which you live. I don't know. But, if you felt well alternating 125/150 mcg, then that is what you should be allowed to go back to. The point of thyroid hormone replacement is to make the patient well, not to get the TSH back into range.
Thanks so much for your response so late at night. This will help me greatly for tomorrows call 🙏 Can I ask what is Reverse T3? How would I know if that's happened? Worst is if I insisted for T3 as well as Levo, she'd most likely refer me to the Endocrinologist at Mount Vernon.. AND it was she who actually sat with me, scrolling through my results from over the years saying my TSH was suppressed and always had been and that we need to get it back up because at my age (at that time I was 60) could lead to brittle bones and heart issues!! She then said of course that's up to you blah blah but of course that's the risk you take!! So I'm facing a battle to get T3 which im certain i should have since my thyroidectomy 20 years ago due to NHS forgetting about me in the first place! Thank you again.
Well, your doctor is wrong about the effects of suppressed TSH. It has nothing to do with bones and hearts. It all depends on why it is suppressed. Once TSH gets below 1, it is a very bad indicator of thyroid status. The most important number is the FT3. If that is very high - in which case your TSH would be suppressed - that can cause bone and heart problems. But, it is the high T3 that causes the problems, not the lack of TSH. And, as you can see, a suppressed TSH is not always caused by over-range FT3. Sometimes the TSH can be suppressed when your FT3 is not even mid-range. So, it is very bad practice to dose by the TSH.
What's more, if your TSH has been suppressed for a long time, the HPT axis can become down-regulated meaning that the TSH will never rise no matter how much you reduce your dose. Doctors just don't seem to understand that.
rT3 is the inactive form of T3. When your T4 gets too high, it starts converting to more rT3 than T3 so that the FT3 doesn't go too high - it's a sort of safety brake to protect you. But, if you're a poor converter, having your FT4 too high can make your conversion even worse. But, don't worry about the rT3 itself, it's just a way of recycling the componants of thyroid hormone, because it is then converted to T2.
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