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[joziel]

Wrensong, these symptoms predate any thyroid meds by at least 1.5 years. They are the reason I went on the thyroid meds in the first place.

Just because I'm on thyroid medication when I don't need to be, doesn't mean I am in a hypermetabolic state or my metabolism is running too high. In fact my last thyroid labs show my T4 has fallen below range and my T3 is only just in range at the bottom, so really I need an increase in thyroid meds if I'm to stay on them. Once you suppress TSH you need a full replacement dose, whether or not you have a thyroid problem.

There is also the fact that coming off thyroid meds is probably going to involve being hypo for some period of time whilst my body adjusts. Could be days, could be weeks - for some people it's months (I hope not) - but I will probably need to reduce calories temporarily to compensate, or just accept I will gain weight. And my nutrition coach wants me to stay at maintenance calories for at least 6wks, having just reached 2200 calories now. Which is another reason to delay coming off the thyroid meds.

Plus I really can't deal with the crap I currently have and then adding in on top of that more crap from being hypo coming off thyroid meds... If I'm one of the lucky people who have no problems coming off and whose body kicks back in fast, then it could all be pretty easy and maybe I should give it a go. Otherwise it's going to be a longer slower process.

Hurdity, if I switch to oral, it'll be to HRT oral - body identical estrogen and utrogestan (which I'm already on and suits me fine), not to a contraceptive pill with synthetic progestin and fixed amount of estrogen. There's simply no reason to do that at all... I don't need contraception.

Just had the phone consult with my Newson dr and I'm switching to Sandrena. She has told me to start at 4x 1mg sachets, which is the equivalent of 8 pumps of gel apparently. I might start at 3. She says because some women absorb it much better than Oestrogel, and we don't want to go in too high. So I have to remain at my starting dose at least 4wks and then increase if needed... It does feel like 'back to the drawing board'...

I have a consult next week with my thyroid online doctor to discuss how to get off meds.

[Wrensong]

Joziel

Just because I'm on thyroid medication when I don't need to be, doesn't mean I am in a hypermetabolic state or my metabolism is running too high. In fact my last thyroid labs show my T4 has fallen below range and my T3 is only just in range at the bottom

Yes - that's why I said "if . . . &" in my last post.   So your recent TFT shows you don't have too much thyroid hormone in your system.

coming off thyroid meds is probably going to involve being hypo for some period of time whilst my body adjusts. Could be days, could be weeks - for some people it's months

I was going to ask whether you'd been advised how long it might take for your body to adapt.  I only know one other woman who's come off thyroid meds altogether after a trial of I think only a few weeks (she was started on it after a number of borderline hypothyroid TFTs with high antibodies & Hashimoto's in the family, but felt no better for it) & I think she went back quite quickly to the sort of thyroid levels she had before.  But if you've been on thyroid meds considerably longer (?) the unknown of how your body will react coming off it certainly complicates your situation.  What a pain for you.

If I'm one of the lucky people who have no problems coming off and whose body kicks back in fast, then it could all be pretty easy and maybe I should give it a go

Let's hope so.

I hope the Sandrena proves to be the answer as regards your menopause symptoms & good luck with the thyroid meds withdrawal.
Wx

[joziel]

I've been on thyroid meds about a year now, with a suppressed TSH for about 7 months. This still isn't that long, and research shows that it doesn't seem to make much difference how long - it just seems randomly individual as to how quickly we recover.

[Gnatty]

Depending where you look, I have read that 4 pumps of oestrogel is equivalent to three mg of Sandrena. Apparently there has been a recalibration of equivalencies in recent months. Having said that I would still start at 3 mg because as you say, you might absorb Sandrena really well and you don't want to overshoot.

[Wrensong]

with a suppressed TSH for about 7 months

Well it would be remiss of me not to say a suppressed TSH can be an indication of too much thyroid hormone in the system from whatever source, but you & I both know that's not always the case, I understand you don't think that's implicated in your symptoms & your history is unusual, making the situation difficult for you & your doctors to interpet.
.
I would usually wonder about central hypothyroidism if someone's TSH, T4 & T3 all test low as you've said on this thread, but that's quite rare as you'll know & I suspect you're right that the metabolic dysfunction all stems from the dieting/fasting history & subsequently being started on thyroid meds, albeit with the best of intentions.  Hopefully you'll come off them easily & no longer have that worry.

I used Sandrena some years ago & symptoms suggested I was getting good absorption from it, though the once a day methods don't suit me well & I didn't stay on it long enough to test oestradiol.  The fact that it's more concentrated should hopefully get around the problem of running out of appropriate body parts for application of the mega-dose of Oestrogel you've been on.  Fingers crossed for you anyway.

[joziel]

Thanks, suppressed TSH and low T4 is very normal on higher doses of T3 and I'm on 45mcg of it at the moment along with 50mcg T4. My labs before starting thyroid meds did not have low T4 (the opposite) or low TSH (always normal).

Maybe I will discuss reducing T3 and increasing T4 as an intermediate step to coming off meds.

[Wrensong]

I'm on v long term T3-T4 combi replacement myself, but at this age (early 60s) only a low dose of T3 & feel horribly over-treated if my TSH is too low, although I needed it to be v low to feel well enough in my 30s & 40s.

Can be so trying, this menopause business, eh?
Wx

[joziel]

Yes, the thing with the various thyroid dosages I've been on, is that the 2 things I was trying to fix with it were 1) these night time symptoms (priority) and 2) slow metabolism.

I've actually trialled T3 only up to 90mcg - which gave me a lot of palps and side effects and wasn't good and it didn't speed my metabolism up at alllllll - which surprised me. The night time symptoms wax and wane and never totally go away but I can't see any correlation with thyroid dosages or changes and they started 3 weeks after I began HRT so I think hormonal fluctuations are much more likely to be behind those.

Which is all to say - finding 'a good dosage' of thyroid med when the symptoms you're trying to address are not actually thyroid symptoms is not going to work.

The metabolism stuff did not get resolved until I ate consistently and regularly every day. (Ie not 800 calories one day and then 2500 the next day etc.) Then it improved extremely rapidly without the dosage of thyroid med I was on changing. (Arguably being on thyroid meds meant this could improve fast because I wasn't fighting rT3 and low T3 which I had before due to this intermittent fasting, so they did help in that sense.) I did a reverse diet from 1800 calories up to 2200 cals where I am now in maintenance. (And haven't gained any weight - have actually lost 4lbs without trying to.)

So I am now hoping that this doesn't go to poop when I wean off the thyroid meds. Part of the reason I think my current thyroid labs have taken a dive, is that my body has become more of a metabolic furnace and is demanding much more T3 now.

Anyway, I am just waiting to talk about it all next week with my online thyroid doctor and will then devise a plan....

[Wrensong]

I've actually trialled T3 only up to 90mcg - which gave me a lot of palps and side effects and wasn't good

Oh Joziel, 90mcg T3  , that's a big dose for such a powerful hormone.  You must have felt dreadful on it

.Which is all to say - finding 'a good dosage' of thyroid med when the symptoms you're trying to address are not actually thyroid symptoms is not going to work.

Absolutely.

Anyway, I am just waiting to talk about it all next week with my online thyroid doctor and will then devise a plan

I hope you get good advice & can get off the thyroid meds smoothly asap.  So glad you are eating healthily now  & have support with that too.  I think you've been having a tough time of it & I wish you the best of luck with it all.
Wx

[joziel]

I didn't feel too bad on 90mcg T3 but my heart was doing weird things, like if I just walked out in to the garden and up the slight slope there, it would overreact as if I needed it to beat really hard and it would race.

And then in the mornings I would sometimes get racing heart as well. All this has stopped now.

It might be that I need a little boost of T3, like 10-15mcg only to boost my T3 and keep my rt3 down - but we'll see how things are when I come off. That wouldn't suppress my TSH and would supplement my own hormones rather than replacing them.

[Jjumper]

Hi Joziel,
I follow your story and always read your posts hoping that you’ll have found some reprieve from your symptoms. I’m so sorry this is ongoing for you. I am dealing with the ‘is it thyroid or estrogen’ nightmare at the moment - hugely frustrating.

Anyway, just to pop in and agree with Gnatty above. My Newson doctor gave the following Sandrena dose equivalent when I switched from Estrogel a few months ago:
2 pumps Estrogel = 1.5mg Sandrena

So I initially took 4.5 sachets of Sandrena to give me the equivalent of
6 pumps of gel.

Hope that helps with your dosing.

[joziel]

That's interesting    my Newson doctor says 2pumps of Oestrogel = 1mg sachet of Sandrena (each 0.5 = 1 pump).

She has told me to start on 4 sachets which is the equivalent (she said!) of 8 pumps. 

On this document it says:
50mcg patch = 1mg Sandrena

:https://thebms.org.uk/wp-content/uploads/2024/02/15-BMS-TfC-HRT-preparations-and-equivalent-alternatives-JAN2024-B.pdf

So 100mcg patch = 2mg
200 = 4mg

If 100 patch is 4 pumps of gel, then 200 patch is 8 pumps of gel - which is 4mg?!?!?!!??!?   

I'm currently on 12 pumps of gel with an extra 25mcg Estradot patch I stuck on when I discovered I was only at 328pmol last week    The extra patch really seems to be helping, from 24hrs after putting it on, I've had 3 good nights of sleep(!!!). Not perfect, but deep sleep for at least 6 hours a night. Could just be a coincidence but I don't think so. I can continue like this for a while but then will run out of my leftover Estradots  and frankly 12 pumps isn't practical long-term either, so I will change, but might just hang out here for a few weeks yet... 

[Jjumper]

Ha! Newson really need to sort out their message! My dr gave me that info in March - I think she said it was the latest info. Who knows what’s right?

I gave up on Sandrena after 3 months anyway. Neither symptoms nor bloods were any better on it and I found it very faffy (waiting for it to dry). I’m back on Evorel patches now which is where I started two years ago.

[Kathleen]

Hello again ladies.


I just wanted to add that a few years ago Newson Health prescribed three 1 mg sachets of Sandrena gel as an equivalent to six pumps of Oestrogel. 

I have continued to use Sandrena and don't have any problems with it.

Take care ladies.

K.

[joziel]

Jjumper, are you talking about the 0.5 or 1mg sachets of Sandrena? If you were on 4.5 sachets (4x 1mg and a 0,5mg) that would be 9 pumps of gel equivalent. If they are all 0.5 sachets then it would be 4.5 pumps of gel equivalent. What patch dosage are you on now?

Yes Kathleen, that's the info I have on Sandrena as well.

I just got my Sandrena today. I'm surprised how tiny the sachets are. I think I was expecting something the size of the Testogel sachets. These are 1mg sachets but tiny.

I can't decide when to switch because I have to go away for 3 days next weekend for a work thing and I'm doing well at the moment with sleep after my added 25mcg patch I spontaneously stuck on (along with my 12 pumps of gel). Not sure I want to change everything up just before I go away so I might delay till I get back... I have about 10 bottles of gel left