I am taking 150 mg thyroxine and 20 mg t3. I have multiple health issues - EDS, suspected Cyclical Cushings, mould and lyme etc etc. However I am always trying to maximise my thyroid health !

Latest bloods

TSH mu/L range 0.35 - 5mu?/

T4 9.4 pmol/L range 9-24 pmol/L

T3 4.6 pmol/L range 3.5 - 6.5 pmol/L

I think as I still feel unwell and am putting on weight again I could do with a small increase of t4 or t3?

This time last year my TSH was 0.79 and T 4 was10.9 and T3 was 5.5pmol/L. I felt generally bit better and had lost some weight which I thought was down to another medication which I was given to reduce cortisol but now I'm wondering could it have been just that thyroid was bit better?

My TSH was also up to 8.3 in March of this year and I have no idea why it would suddenly fluctuate? Never happened before.

Thanks for your help !

25 Replies

  • Do you still have your thyroid by any chance?

  • I do have my thyroid yes .

  • How about antibodies? Have they been tested?

  • I have never had antibodies show up at all. Do you think I cud increase a little ?

  • Yes, I think you should increase your T3 a little. :)

    But, it would be a good idea to get your antibodies tested.

  • I will try but GP won't do them and don't have an endo appt until next spring.

    Why do you think my T4 is so low ? Is it lower because I'm taking t3 ?

    I know I'm a poor converter too which was evidenced in my genetics

    My TSH is 2 .

  • Two is too high for a TSH when you are on thyroid hormone replacement - especially T3. It should be one or under.

    Yes, your FT4 is low because you're taking T3, and don't need as much. :)

  • Oh thanks for explaining. I thought that was the case.

    I can't get hold of more t3 very easily. Could I just increase the thyroxine ? I was on NDT but can't afford to keep it up so switched back to thyroxine and some t3. I expect that will get taken away soon though !

  • Well, you could try increasing your thyroxine, but if you're a bad converter, it probably won't raise your FT3.

  • Hmm. Yes that's true. Hmmm. Something is afoot here but I'm not sure what ! Thanks for your input. X

  • What sort of something?

  • I'm not sure but in all the years I have had low thyroid numbers ( including the time I was ignored and left untreated ) my TSH never went above 6. I had another issue which stopped me taking thyroid replacement in any form for several years and once that was sorted , I have been stable on replacement for a good 18 months. So why wud it suddenly shift ? I'm wondering about other issues I have such as Lyme and mold toxicity maybe impacting. Or something to do with the cushings that I'm suspected of having ?

  • Well, it could be that you do have Hashi's. But if doctors don't do the tests, we'll never know. What are they doing about your suspected Cushing's?

  • Yes. I have had antibodies checked many times in the past though and always normal.

    They are trying me on cortisol reducing meds and doing scans etc.

  • So, you do have high cortisol, then? They have done cortisol testing? They're not just guessing? Because it seem rather strange to just 'suspect' something, when there are all these tests available to prove if you have it or not.

    Have you tried Holy Basil to lower cortisol? I believe it works quite well for some people.

  • No I have had lhigh cortisols on tests but cushings can be very complex to diagnose. It can be cyclic or episodic and so it comes and goes anc my endo says the tests are not very sensitive unless the condition is more florid. So I say suspect bevstse he is basing it on clinical symptoms , history , tests and photos of me past and present. It's not straightforward at all. Some of the testing I can't have as I allergic to contrast and they need to use it.

  • OK, you're the expert on that one. Just as long as they are doing something! Far too often doctors just stand around, stroking their beards and saying they 'suspect' this and that, but do nothing! We hear about that all too often on here. :)

    As for the antibodies, have you had both lots done? TPO and Tg antibodies? Also, some Hashi's people never develop high antibodies, they are only diagnosed with a scan.

  • Well there has def been some periods of beard stroking Greygoose yes but I think I'm not In a huge rush to have pituitary surgery if uncertainty remains. Which is really the only treatment of course as we know the tests are limited

    What shows on the thyroid scan ? I have had two. Which showed large modules.

    Maybe I shud get hold of those scans aNd reports ? I know one endo said to me he wasn't worried about antibodies as it didn't affect treatment. Do they all think like that ?

  • Yes, the pillocks all think like that! We know if won't affect treatment - there isn't any other treatment, anyway, other than thyroid hormone replacement, to replace the hormone the dying gland can no-longer make. But, if they only understand the nature of Hashi's, they would know to expect the swings of high to low level of hormone in the blood, and back again. And then they would stop blaming patients for the changes in levels - which is what they do now!

    I wrote a long detailed explanation of how Hashi's works, for someone, this morning, but the OP deleted the whole post, for some reason, so I can no-longer refer back to it. And, I don't really feel like writing another one right this moment. I'm far too cheesed off about the lose of the first one! Sorry.

    But, it really does matter knowing if you have Hashi's or not. Because you can do things to help yourself, like going gluten-free, and taking selenium. And, also the importance of keeping your TSH suppressed - which they really don't understand, either!

    On a scan, you can see the damage done to the gland by the antibodies. And, as the disease progresses, you see the gland shrinking untel it's just a small pea! :)

  • I don't blame you. How frustrating !

    I think the scans were normal apart from the nodules.. No one mentioned anything else but then they don't do they !

    I'm already GF and have looked at selenium support in the past so will look again. Maybe I will just pay to get my antibodies done but they were checked within the last year.

  • Where could I get more info / resources on keeping TSH suppressed ? Will take to my next endo appt ! Or call and get seen sooner.

  • Funnily enough, there was a post on it today. I'll see if I can find it. :)

  • Thank you very much !

  • You're welcome. :)

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