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[joziel]

Crispy, I don't recommend 99% of endos for thyroid issues. They don't understand that TSH is irrelevant and they keep a lot of people sick by underdosing them. The only reason to see an endo is if you want to investigate more complex issues beyond the thyroid itself, like the pituitary or if you need physical investigations like thyroid ultrasounds etc, or have a suspected physical cause for the disease. Probably that would not be the place to start, the place to start would be optimising your thyroid levels with meds and seeing if it helps your symptoms.

Total T3 is not a useful test. It's free T3 you need to know.

[CrispyChick]

Ok. Thanks for that. Makes sense. 

[Seasidegirl]

I'm not sure I'd agree re Endo but I'm overactive rather than under so the GP wouldn't treat so I had to have consultant care and the NHS wouldn't see me.   

I wouldn't have been treated without the private Endo but you do need to find a good one who understands thyroid not diabetes. 

This might help with potential options https://thyroiduk.org/get-support/thyroid-uk-support/private-gps-and-practitioners/

[Furyan]

But my working hypothesis is that starting estrogen screwed up my thyroid somehow by putting a lot of demand for thyroid hormones which I just didn't have.

That's my story so far anyway. This has all gone on for about 3.5 years now. I finally have some hope. It has been hard to keep going sometimes, when my sleep is so bad, but luckily I am self-employed and work from home and can set my own hours. The downside is that I don't get sick pay and if I don't work, I don't get money....

I’ve recently concluded this about the oestrogen/thyroid connection too and it’s not just in our heads because there is a known interaction between the two. I took the plunge and had the mirena fitted couple weeks ago which seems to have increased my need for oestrogen as well. I have read some ladies here sharing the same. I switched to gel only which has helped a little but I’m now having to slightly increase to just over 4 pumps to try counter the effects of the mirena. I find that increasing oestrogen does bring the side effect of more mucous build up in my chest/throat.

Like you I’m self employed and this has gone on for about 1.5 years now. I’ve had to go from face to face work to working online for now due to the fatigue and poor stamina this has all caused. I hate it and it’s not ideal for my work but at least I could return to work from being sofa bound for about 6 months.

[joziel]

Furyan, me too. I have stopped face to face work and now work online from home only, partly due to this.

You might find the Mirena effects wear off. I seem to remember that for a few months after it is fitted, it does release a bit more progestin which can go systemic. But then it reduces to the regular dosage and it stops going systemic for most women.

The only reason I sometimes doubt the estrogen-thyroid thing being a cause for me, is that my thyroid panel was actually pretty normal before I ever went on thyroid meds (even after starting HRT and after these symptoms had begun). I had high rt3 (33, above range) and low but in range T3 (3.9, range 3.2-6.. We were a bit sceptical that this would be enough to cause the symptoms I was experiencing so it was a 'trial treatment' to give me a bit of T3 and see if it had any effect.

I really now suspect that if I had never gone on thyroid meds but just increased my estrogen sooner into the 850pmol ish range, my symptoms would have gone away. And that I really just needed this higher E dose.

The reason we didn't try that earlier, is that at first I appeared to be incredibly sensitive to estrogen: This all began when I started estrogen, even on a low dose of 50mcg and it at first appeared to get worse (not better) with each dose increase. So I stopped it totally for 6 months. So due to all that history, the decision to trial higher doses was very delayed. And by then I had begun thyroid meds.....

And for some reason starting the thyroid meds caused my own pituitary to give up so that even when I came off them, I never recovered previous function and had very low T3 and T4. So now I really do have a bone fide thyroid issue as well. However, I am doing well at the moment: I've managed to source some Estradots again from Newson and CLoudRX and I've just increased my T4 and am sleeping well.

At the moment I am a sink for T4. I am increasing doses but levels are not going up on bloods, I feel great for a week after increasing and then it backslides. Just increased to 125mcg T4 and still on 30mcg T3. Waiting for this endo referral...

[Furyan]

Furyan, me too. I have stopped face to face work and now work online from home only, partly due to this.

You might find the Mirena effects wear off. I seem to remember that for a few months after it is fitted, it does release a bit more progestin which can go systemic. But then it reduces to the regular dosage and it stops going systemic for most women.

The only reason I sometimes doubt the estrogen-thyroid thing being a cause for me, is that my thyroid panel was actually pretty normal before I ever went on thyroid meds (even after starting HRT and after these symptoms had begun). I had high rt3 (33, above range) and low but in range T3 (3.9, range 3.2-6.. We were a bit sceptical that this would be enough to cause the symptoms I was experiencing so it was a 'trial treatment' to give me a bit of T3 and see if it had any effect.

I really now suspect that if I had never gone on thyroid meds but just increased my estrogen sooner into the 850pmol ish range, my symptoms would have gone away. And that I really just needed this higher E dose.

The reason we didn't try that earlier, is that at first I appeared to be incredibly sensitive to estrogen: This all began when I started estrogen, even on a low dose of 50mcg and it at first appeared to get worse (not better) with each dose increase. So I stopped it totally for 6 months. So due to all that history, the decision to trial higher doses was very delayed. And by then I had begun thyroid meds.....

And for some reason starting the thyroid meds caused my own pituitary to give up so that even when I came off them, I never recovered previous function and had very low T3 and T4. So now I really do have a bone fide thyroid issue as well. However, I am doing well at the moment: I've managed to source some Estradots again from Newson and CLoudRX and I've just increased my T4 and am sleeping well.

At the moment I am a sink for T4. I am increasing doses but levels are not going up on bloods, I feel great for a week after increasing and then it backslides. Just increased to 125mcg T4 and still on 30mcg T3. Waiting for this endo referral...

I understand why you’ve sometimes said that you have no idea what’s going on and just going along with the treatments according to how you feel and bloods. Good to hear that the higher oestrogen dose seems to address some of your symptoms though - there are a few ladies who have found this even if it goes outside the conventional dosing. How do you know how well you’re converting that T4 though?

I also have zero idea exactly which part of my jigsaw (thyroid, oestrogen, b12, and now mirena) is causing my fatigue/weakness as they all give these symptoms! I can say that having the mirena has really ramped them up to the point where I’m scared it might have given me even lower cortisol! Really hoping you’re right that the mirena will settle - I’m currently adding 3 pumps of gel to a .75 patch to try balance out the mirena, and discovering that gel is in fact stronger than the patch?

[CrispyChick]

TSH - was 0.8 now 1.3.  Range 0.23 - 5.6 mu/L
Free T4 - was 16 now 17 Range 9-28 pmol/L
Free T3 - was 3.4 now 4.3.  Range 3.1-6.8 pmol/L


Well I trotted along for my bloods to be retested on something that was flagged a few weeks ago.

For some reason they retested my thyroid too. 

So, all my levels have gone up slightly. But that T3 now sits middle of the road within my range. Is that better?

The only thing I've changed is starting progestin only pill at heafty dose.

[Furyan]

Well I trotted along fur my bloods to be retested on something that was flagged a few weeks ago.

For some reason they retested my thyroid too. 

TSH 1.3
Free T4 17
Free T3 4.3

To my knowledge - with those FT4 and FT3 levels, you are not converting the T4 at all well. I would expect a higher T3 than that with T4 of 17. I was very similar when I crashed. You may need to add a little T3 to your regime but you need to consult with a thyroid professional to discuss this. There are countless other people who don’t but, in your case for now, I’d definitely get a professional opinion to look at treatment options.

[CrispyChick]

Ok. Thank you. I'll keep thyroid on my list for once I've come to a conclusion on my latest hormone trial.

Sorry, I was messing with the post when you replied.  . I've now updated my then (last month) and now (which was a wee Brucey bonus test.  Especially as my GP tests free T3  )

[joziel]

Crispy with that T4 and T3 ratio, I would suspect you have high rT3. Like Furyan says, you are not converting your T4 to active T3 very well at all - and usually when that happens, it's going somewhere else (rt3).

As for whether that's enough to cause these kind of symptoms, that's the kind of situation I was in before starting thyroid meds. Only I also tested rT3 and found it was above range. We still don't know if that was causing any of my symptoms, but I can for sure say that I need both estrogen and thyroid optimised now to be able to sleep.

I am doing incredibly well this last week, since increasing my T4 to 125mcg (keeping T3 at 30mcg). I am sleeping 7.5hrs and it's the sort of 'head hits the pillow and you're unaware of anything until you wake up at 8am' sleep which I used to have before all this mess began 3.5 years ago. I am back on my 100 Estradots (thanks to Newson and CloudRX) and I think that also helps because I get more estrogen from the 100 patches than the equivalent dose in smaller patches, due to the grimy ring which happens around each patch(!).

I am now waiting 5 weeks to re-test thyroid doing another full venous draw with the Blue Horizons Platinum test including rT3. If I continue to be okay and to sleep well, my next thing to try will be to reduce and maybe stop the Oestrogel. I bloody hate the Oestrogel and wish I could just be on 300mcg patches... I worry about contamination (of pets and partner) and I don't know if I'm actually absorbing much of it, either.

Furyan, how do I know how well I'm converting the T4? Well, every 6 weeks I am running a full thyroid panel with Blue Horizons, including rT3 - so I can see if my T3 goes up and what is happening with my rT3. My T3 dose is staying the same at 30mcg so any improvement is due to conversion. Besides, my sleep is massively transformed when my T4 gets up into range. My next set of bloods will be very interesting.

[SundayGirl]

Well Crispy your T3 does show a slight improvement but whether that's down to you adding in a POP is a maybe at best 
Sex hormones and thyroid hormones do have an effect on each other so it's a definite possibility. Then again, when a person's thyroid is failing, the levels can jump around drastically before you become overtly hypothyroid - the thyroid itself can increase it's own production of T3. Sorry, not much help there am I?

Joziel, I'm not going to get into another argument with you but feel the need to say that yes, it's possible that Crispy has an increased level of rT3 but she won't be feeling any adverse effects because of it. Low T3 causes symptoms, not high rT3. (Although there is a direct relationship between the two)

[joziel]

Whatever. Your opinion.

Not the opinion of many doctors: https://www.restartmed.com/reverse-t3/?srsltid=AfmBOorqFGdRS3-OBg4qDHKXlzHateLLJO5TWNXeAn4gQU5gcF0lmMnV

Doesn't really matter, in this instance.

[SundayGirl]

Whatever. Your opinion.

Right back at you 

[AmandaJR]

Hi Crispy,

Is the T4 range correct? If it is correct at 9 -28 pmol/L then you don’t have a lot of T4 to convert to T3. Not sure on a progesterone link, I’m experimenting with thyroid and sex hormones too.

[SundayGirl]

I asked the same thing Amanda. It is correct although not a range I've seen before either.