Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: joziel on July 03, 2024, 06:15:49 PM
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328pmol
What the actual…????? It was 350pmol on 6 pumps. So I’m really not getting much here. I might need to check in with my Newson doctor now and request another product!!
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How do you feel in yourself? Are you still symptomatic? What do you absorb from patches? Blimey, 12 pumps.. you would have thought the figures would be in the mid hundreds at least! :o
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I would definitely be wanting to use patches or spray or even oral oestrogen. The very thought of having to spread all that over my body and waiting for it to dry - you must be going bonkers with having to do that! Having said that the levels you record are perfectly respectable but only if your symptoms have resolved ( and I can't remember your age and menopausal stage?). Is this from blood test drawn at a surgery? Mine have never been that on HRT!
Hurdity x
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It was a venous blood draw. I am 46yo in peri with severe night time symptoms...
I am very symptomatic with poor sleep, inner tremors at night, hypnic jerks as I start to fall asleep. It is better than a year ago (less intense) but definitely not ok.
I started out on patches and didn't absorb them well either. I think the next thing is Sandrena gel which is more concentrated. But if that doesn't work, it will be oral estrogen.
I'm not too worried about the risk of blood clots, more that if I ever need surgery they will force me to stop oral estrogen but I could continue transdermal...
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Can't offer any advice Joziel but just wanted to say I feel for you with regards to your sleep. I had about 2 or so years of it and mine seems to have changed again recently following a virus. There is nothing worse than poor sleep and, if you're like me, every night you hope you'll sleep better and then the cycle starts, doesn't it. I wish there was a decent treatment for it (and for everything else tbh)
It seems incredible that at such high doses you can't find relief. Has your Newsom specialist shed any light as to why the dose isn't having the desired effect? Do they think you'll eventually get on top of the symptoms?
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I've only just found out that the dose isn't working ;D I do feel like I've just wasted 4 months, though. My serum levels are the same on 6 pumps as on 12 pumps.
I have an appointment booked for Monday, a 10min 'advisory call' with my Newson doctor, to talk about switching to Sandrena. I think I might well end up on oral though. Sometimes I think I should just switch to oral now because the thought of fannying around with increasing Sandrena and blood tests etc etc for many months just isn't very appealing, seeing I didn't absorb patches well either.
The problem is that I want to come off thyroid meds but the thought of changing around my estrogen doses whilst also reducing thyroid meds just doesn't sound like a good idea to me - so I might now have to delay coming off the thyroid meds. Which I only went on as a trial to see if they helped my night time symptoms.
This is all such a nightmare. Today I stuck a 50mcg patch on because I have some left and I just need to get some sleep before I get my Sandrena in....!
And no wonder I've stopped bleeding - I'm on a high dose of P (300mg utrogestan) because of this high E dose, yet I'm not absorbing the E dose and my serum levels are not high. So with a lot of P and not much E, I'm not bleeding....
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Depending how desperate you are to feel well personally I'd go for oral now. Once you're stable on that you could try sandrena, you'll know within a few days if you don't absorb it so there'd be no need to wait another 3 months. Given you don't absorb anything else transdermal imo the chances of sandrena being the magic bullet are pretty slim.
On the plus side at least you don't have to worry about a thickened lining :-X
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Yes, exactly sheila ;D I don't know what to do about the idea of changing to oral now. I think I'm a bit worried about not being able to easily adjust my dose, like I can with a transdermal product. It seems like it's harder to gradually increase the dose because the tablets are 1mg or 2mg (I think) so I'd have to increase by that much each time....
Plus I also worry about having to stop it if I ever need surgery for anything, due to the increased risk of clots with oral.
And lastly oral HRT also can get bound up with SHBG and lead to high SHBG where all your hormones are basically bound and not available to be used. This is a particular concern because I'm also on thyroid meds and T3 is known to do this a lot. I'm supposed to get off the thyroid meds and then this wouldn't be a problem although I might need an adjustment in dose.
So it would be a lot simpler if Sandrena would just work for me. But I'll talk to the doctor on Monday about it and ask her what she thinks about oral vs Sandrena...
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I sympathise with your plight especially concerning interaction with thryoid issues. Have you posted on the thyroid thread started by Wrensong - she is the best person on the forum to discuss HRT and thryoid with, though she is not on the forum much these days.
As you are so young, have you thought of, or tried one of the contracpetive pills designed for peri-menopause ie Zoely or Qlaira? Qlaira has more oestrogen and is tri-phasic ( different dose of oestrogen throughout the cycle). I know the progestogen is synthetic but it might partly be an answer to your problems, SHBG aside....
Hurdity x
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I did participate in that thread some time back yes.
Don't think one of the pills would be a good idea, because the progesterone is a progestin and because I'm then locked into a set amount of estrogen unless I increase with another pill. Better to have both separately, as with transdermal.
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Sorry to hear that but at least you know now.
I really think there's a ceiling level with what can be achieved with gels, and have read a guideline somewhere referring to a specific gel -sandrena I think - stating that increasing beyond 3 pumps did not further increase plasma levels.
With oral, the tablets tend to be small but you could split them with a razor blade or pill splitter.
However you may just find you feel well on a mainstream dose like 2mg and don't need to micromanage it.
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Yes, I've heard that it can be hard to get beyond a certain amount. If you heard that about a gel with 'pumps' though, it would be Oestrogel. Because Sandrena comes in little sachets like Testogel.
I seem to be able to absorb Testogel, so if it's the same base ingredients besides the hormones, hopefully I can absorb Sandrena as well....???
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Hello joziel.
I am so sorry that you are still struggling.
I have used Oestrogel in the past and now use Sandrena. The pump gel is much thinner and runnier but dries more quickly than Sandrena.
I haven't been able to compare oestrogen levels but they are very different products.
I hope you get sorted soon and please keep us updated.
Good luck with your Newson appointment and take care.
K.
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Hi Joziel, just a quickie - if it's certain you don't need them, could you talk to your doctor about coming off the thyroid meds first & then concentrate on getting your HRT sorted?
If you have been on thyroid meds your body doesn't need & your metabolism has been running too high as a result, it seems likely this will be contributing to the insomnia, tremors etc you mention. I also wonder whether a hypermetabolic state (the thyroid meds driving your body too hard) could be causing overly fast clearance of oestrogen, perhaps adding to your difficulty in achieving the higher oestradiol levels you & your MS feel you need?
You are in a difficult situation, I sympathise & absolutely get how debilitating & distressing chronic insomnia is.
Wx
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I did participate in that thread some time back yes.
Don't think one of the pills would be a good idea, because the progesterone is a progestin and because I'm then locked into a set amount of estrogen unless I increase with another pill. Better to have both separately, as with transdermal.
Yes I understand that but if you absorb better orally then you may not need the higher oestrogen dose?
Yes, I've heard that it can be hard to get beyond a certain amount. If you heard that about a gel with 'pumps' though, it would be Oestrogel. Because Sandrena comes in little sachets like Testogel.
I seem to be able to absorb Testogel, so if it's the same base ingredients besides the hormones, hopefully I can absorb Sandrena as well....???
Testogel and oestrogel are equivalent in terms of ingredients apart from the active ingredient, both made by Besins. Sandrena has very different base ingredients - it is much thicker and stickier so it dries in a different way. Slower to dry and therefore maybe absorbs better? I understand that once the alcohol has evaporated with Testogel and estrogel, absorption ceases?
Hurdity x
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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.
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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
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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.
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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.
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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.
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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.
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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.
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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
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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....
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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 :o, 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
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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.
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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.
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That's interesting ;D 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. ;D
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?!?!?!!??!? :o :o :o
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 ;D 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 ;D ;D ;D 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... ;D
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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.
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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.
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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 ;D ;D ;D
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Joziel if you Google the Women's health concern and Sandrena you will find the new chart of equivalent doses. It states that a high dose equivalent of 4 pumps of oestrogel is 2-3 mg of Sandrena. x
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Not getting anything up when I google that. The WHI was a highly discredited piece of research so not sure I'd pay much attention to what they decide Sandrena equals... ;D
But yes, 2mg of Sandrena = 4 pumps of gel according to my Newson doctor.
3mg = 6 pumps
4mg = 8 pumps, which is what I've been told to start with.
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No, I was prescribed the 1mg sachets. I've just got out my consultation letter to confirm what I had been told. It says change from 6 pumps of Oestrogel to 4.5mg Sandrena daily. It does not say to increase my dose, just to change to an 'equivalent dose'. This is what I did.
As I have been reducing my dose slowly since last summer (when I was on 2 x 100mcg patches Evorel plus 3 pumps of Oestrogel daily which made little different to my symptoms) I recently reduced my Sandrena dose down to 3mg (the equivalent of 100mcg patch according to my doctor) and then I finally switched to 100mcg patch Evorel a couple weeks ago which is what I am on now.
I don't know which doctor is right on this, but I have to say I am frustrated that we have been told different things. I really like my Newson doctor and find her to be very thorough (better than the one I had previously). But I wish the clinic would take more responsibility for this sort of thing. It is hard enough dealing with symptoms, trialling different preparations, titrating doses etc. without being given differing information.
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General advice is that 2 pumps of Oestrogel is equivalent to 1mg sachet of Sandrena.
However, in terms of estradiol each pump of Oestrogel has 0.75mg of estradiol so the equivalents are rough.
I was on 3 pumps of Oestrogel, after failing on new Oestrogel (7 8 pumps) I switched to Sandrena. I started on 1.5mg, it was not enough then settled happily on 2.
I could take Oestrogel in 1 dose (am) but with Sandrena I have to split it as it seems to wear off.
Joziel, I would stick with your current regeime until you're back from holiday then try it.
Good luck x
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You have to remember that there is no exact equivalence because different women vary on how much they absorb of a given dose of a given product, and equally one woman may well absorb more effectively from patches than gel. These amounts are averages - translated from what used to be low, medium and high - but they are averages across a population, not how much each one of you individually will need to achieve, say the same estradiol level as you did on a different dose (and different women also experience symptoms differently even with the same etsradiol level).
In terms of total estradiol in the amount of gel - then clearly 2 pumps of oestrogel contain more than 1 mg sachet of Sandrena - but Sandrena is not only more concentrated, it is also forumlated differently from oestrogel, so the time pathway for absoprtion is likely to be different generally, as well as being different for different women. I don't know if the pharmacokinetics (the time course of what happens to the hormone levels in the body) are comparable - usually when you look it up you cannot compare as it is not like for like.....
Hope I haven't muddied the waters here!
Hurdity x
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Not getting anything up when I google that. The WHI was a highly discredited piece of research so not sure I'd pay much attention to what they decide Sandrena equals... ;D
But yes, 2mg of Sandrena = 4 pumps of gel according to my Newson doctor.
WHI is completely different. It was a report. Dr Juliet Balfour definitely says 3mg is 4 oestrogel according to new table But as Hurdity says it is all individual and you have to find your own way/ balance.
Interesting that Banjo found she needed two mg of Sandrena when she had previously been on 3 pumps of oestrogel. This accords with the new guidance.
3mg = 6 pumps
4mg = 8 pumps, which is what I've been told to start with.
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Thanks Hurdity and yes of course I understand what you are saying about differences between products and individualising treatment.
However I think that it’s important that when we are transferring from one product to another we are informed by our doctors of the correct equivalent dose, or as close as possible to it.
Anyway, apologies Joziel if I’ve confused things for you. I was trying to help with the information I had been given, that’s all! Good luck with the Sandrena. I really hope that it works for you : )
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Oooh following this ladies.
I was on 3 pumps of old bottle oestrogel (it was soooo good) and then 75 estradot patch. I'm now on 1.5 sachets of Sandrena but I have ectopic heartbeats really bad (big peri symptom for me). Wonder if a wee bump up to 2mcg would be advisable? Hmmm.
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Joziel, haven’t been on here in ages and sorry to see you are still not sorted, if any consolation neither am I YET, talk about trying, waiting, changing, suffering, wondering, it’s crazy!
Anyway I know you have same Thyroid doc as me, I am on T4, trialled T3 but felt horrendous!! I had apt today and he said something else is causing my low thyroid not thyroid itself, he said unbalanced estrogen could be the cause and I think he’s right! I’m putting up a new post but wanted to wish you well.
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I had apt today and he said something else is causing my low thyroid not thyroid itself, he said unbalanced estrogen could be the cause and I think he’s right!
You are right, hormonal imbalance somehow affects thyroid hormones, while thyroid itself continues to function properly. When I was in peri I had horrible insomnia, fatigue, anxiety and depression. My thyroid test result came not looking good despite I never had any problems with thyroid in my life. That time I used Evegreen medical app and when my test results came on it there was explanation that something effected my thyroid hormones, but my thyroid itself was working fine. My estrogen wasn’t properly opposed by progesterone, in fact I was estrogen dominant, so after adding progesterone to my body, balance between hormones was restored and all the symptoms were gone, thyroid hormones were back to normal too.
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The thing about the thyroid is it's your body's way of dialling down metabolic function. And sometimes your body might need to do that for other reasons (ie low sex hormones and many other reasons, fasting etc). So whilst we can then try to take thyroid hormone to fix it, because the low thyroid hormone is itself a symptom, it is really best to treat the underlying cause. Of course that's easier said than done sometimes...
Floral, sorry to hear T3 didn't work out for you. At the moment I'm on 50mcg T4 and 45mcg T3 and my last set of labs have plummeted despite having increased T3 since last time. I was really expecting my results to be over range and I've come back below range on T4 and bottom of range (21% of range) on T3. This is because I've been working out every other day, have a fast metabolism back and a body which is now hungry for thyroid hormone. I'm pretty sure if I hadn't put myself on thyroid meds my own body would now be responding and making more T3.
I really want to now get off the thyroid meds and see where I am without them. There might be a case for a very low dose of T3 of 10-15mcg just to bump my own levels up, not to suppress TSH or replace them. But will see how I am without anything first. But I don't want to do that at the same time as making this Sandrena switch or I won't know what is causing what....So I might need to temporarily increase at least my T4 dose whilst I get this Sandrena on board...
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Yes, exactly sheila ;D I don't know what to do about the idea of changing to oral now. I think I'm a bit worried about not being able to easily adjust my dose, like I can with a transdermal product. It seems like it's harder to gradually increase the dose because the tablets are 1mg or 2mg (I think) so I'd have to increase by that much each time....
Plus I also worry about having to stop it if I ever need surgery for anything, due to the increased risk of clots with oral.
And lastly oral HRT also can get bound up with SHBG and lead to high SHBG where all your hormones are basically bound and not available to be used. This is a particular concern because I'm also on thyroid meds and T3 is known to do this a lot. I'm supposed to get off the thyroid meds and then this wouldn't be a problem although I might need an adjustment in dose.
So it would be a lot simpler if Sandrena would just work for me. But I'll talk to the doctor on Monday about it and ask her what she thinks about oral vs Sandrena...
Zumenon is the estrogen part of Femosten. The progesterone part is the same for 2/10 amd 1/10 . I have the 1/10 and add half a Zumenon .
PMX
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How are you finding it pepperminty? Are you on oral because you couldn't absorb transdermal?
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Not getting anything up when I google that. The WHI was a highly discredited piece of research so not sure I'd pay much attention to what they decide Sandrena equals... ;D
But yes, 2mg of Sandrena = 4 pumps of gel according to my Newson doctor.
3mg = 6 pumps
4mg = 8 pumps, which is what I've been told to start with.
Gnatty mentioned the women’s health concerns, not WHI.
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Oh my bad. Still, just googled that and can't find anything about Sandrena...
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You are right, hormonal imbalance somehow affects thyroid hormones, while thyroid itself continues to function properly. When I was in peri I had horrible insomnia, fatigue, anxiety and depression. My thyroid test result came not looking good despite I never had any problems with thyroid in my life. That time I used Evegreen medical app and when my test results came on it there was explanation that something effected my thyroid hormones, but my thyroid itself was working fine. My estrogen wasn’t properly opposed by progesterone, in fact I was estrogen dominant, so after adding progesterone to my body, balance between hormones was restored and all the symptoms were gone, thyroid hormones were back to normal too.
Angel, I so hope the progesterone will help me too! Were you on Estrogen only? Did you reduce your estrogen also? Tk you for replying.
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Joziel, it’s so darn tricky!! Prob best to do one thing at a time. Re the thyroid hormones would you be best to work with Dr M to guide you?
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Angel, I so hope the progesterone will help me too! Were you on Estrogen only? Did you reduce your estrogen also? Tk you for replying.
I wasn’t on any type of HRT that time, because “estrogen dominance” is not recognised by NHS, so they don’t treat it until this condition becomes too dangerous to ignore it. Only progesterone was added to stop uncontrollable heavy bleedings, caused by a further drop of progesterone in peri, and suddenly for me it stopped the rest of my long list of symptoms, which I already had for decades, before my periods went through changes in peri. My own estrogen level remained sufficient enough to support all the functions to keep my body happy until I became menopausal, so that time I did not need additional estrogen at all.
To get right hormonal balance can be not so easy for some ladies, I wish you good luck with your treatment. :)
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That explains it thank you! Best wishes
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Yes, I had (have?) endo (symptom-free at the moment) and was just stuck on desogestrel for over 10 years to suppress it. It sucked, I had zero libido, migraines and just felt flat. But I was too scared to come off because it kept the endo away.
Then I got hit by peri and low estrogen and started HRT and stopped the desogestrel and found that a hefty dose of utrogestan (300mg continuous) is keeping the endo away just as well, but allowing me to have my hormones back too. I could probably have done this 10 years ago and avoided taking desogestrel all that time, if only the NHS knew about natural progesterone...
Floral, so are your thyroid hormones okay now? Are you off thyroid meds? Did you start them, I can't remember? I'm a bit nervous to come off but think I might have built this up into some massive big deal here... Yes I have an appointment with Dr Momi this coming Tuesday to see what he says about how to come off. I don't think he is very supportive of people trying to come off meds as usually thyroid patients can't, but I think I'm a different case...!
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Joziel, I am still on T meds, I’m on T4 62.5mcg, started at 50, Dr Momi tried me on v low dose of T3 which I do need but my headaches and anxiety were off the scale !! So I tried extra 25 T4 and had to just add 12.5. Then Covid hit last week so I’m not in a good place atm. Think I have central hypo but prob is I will need T3 and worry how I’m going to take that. It’s all pants and disrupts ones life so much! Best of wishes for your upcoming apt x
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That all sounds a bit rubbish I'm sorry :( Have you investigated high/low cortisol problems as that is a frequent reason people can't tolerate T3? Have you done a 4 point saliva cortisol test?
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It’s horrid Joziel, I don’t know what’s going on. Yes I had 4 point saliva cortisol tested in June and it was fine. Bottom line I need T3 at some stage.
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How are you finding it pepperminty? Are you on oral because you couldn't absorb transdermal?
Hi,
ok at the moment thanks. I started on prempac ( the GP and me at the time didn't know much about HRT and the GP still doesn't)- Prempac didn't agree with me and then i was given femosten. I haven't tried transdermal yet . Too scared to change in case it all goes wrong . My job is stressful and while F works and I am healthy- don't drink /smoke/ not overweight, my risk is still low. Once I get to 60 I will consider changing to transdermal. But as I understand it the risks of oral HRT are lower than if I drank and smoked and was obese. I get on ok with the progesterone in F and wish they would re introduce it here again. But apparently Louise Newson said there is no commercial interest . I wish some high profile person would create some interest then ! ::)
PMXX
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I agree, don't change if you've found something that works :o
The problem with "commercial interest" is that capitalism is bollocks and drives the entire planet. It will be responsible for the end of the human race because it's behind global warming. Only things which make money are prioritised. And unfortunately there's no money in hormones. (There is in endless natural supplements and things that barely work but are heavily marketed.) Anyway don't get me started...
I might have just found something that works but it's 12 pumps of gel and a 50mcg patch which I don't think is very practical ??? ;D Still, if all else fails I can come back to it ;D Hopefully Sandrena will save the day. Or maybe I just need a ton of patches.
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I agree, don't change if you've found something that works :o
The problem with "commercial interest" is that capitalism is bollocks and drives the entire planet. It will be responsible for the end of the human race because it's behind global warming. Only things which make money are prioritised. And unfortunately there's no money in hormones. (There is in endless natural supplements and things that barely work but are heavily marketed.) Anyway don't get me started...
I might have just found something that works but it's 12 pumps of gel and a 50mcg patch which I don't think is very practical ??? ;D Still, if all else fails I can come back to it ;D Hopefully Sandrena will save the day. Or maybe I just need a ton of patches.
If men required hormones then I hazard a guess that there would be a whole smorgasbord of available options to try. ::) PMX
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Thyroid-folks, I'm re-surrecting this thread...
So, this summer I came off thyroid meds. The dosage I was on just before coming off, was 50mcg T4 and 45mcg T3. I followed the advice of my thyroid doctor (who I hoped never to have to see again because I was going to be totally fine, right?) and halved the T4 to 25mcg and then reduced T3 by 5mcg every few days. When I was off all the T3, I stopped the T4. All this took about a month.
I then waited 6 weeks and tested. And got these results:
Blue Horizon venous draw (Platinum test)
Off all meds (6wks off)
TSH 2.38
free T3 2.6L (3.1-6.8 )
free T4 12.3 (12-22)
Total T4 64L (66-181)
rT3 17 (10-24)
Reverse T3 ratio 0.15
Thinking I just needed to give it longer, I waited another 4 weeks (so this is 10 weeks off meds) and tested again, this time with Lola Health (who use an NHS lab) and the results were exactly the same:
Lola Health venous draw
Off all meds (10wks off)
TSH 2.66
free T3 2.5L (3.1-6.8)
free T4 12.4 (12-22)
By this time, my hair was falling out in the shower. My feet were ice blocks at night. I could only sleep about 4 hours again. My metabolism had slowed right down and I was going to end up reducing my food intake and ending up back where I'd started. My skin was really dry. And on the same blood test my cortisol was high and my prolactin was also high. (Apparently both high E and hypothyroidism can cause that.)
Why is my TSH not going high to demand more thyroid hormone?! And why is my rT3 relatively high when all my thyroid hormones are so low?
I re-started 15mcg of T3 in 3x doses a day. And now I'm a bit lost. I was going to take this for 6 weeks - and then re-test and see my private thyroid doctor about it all, with all the results. But someone on FB has freaked me out by telling me it could be central hypothyroidism (ie caused by my pituitary or hypothalamus, not my thyroid) and I should go to my GP and get referred to an endo, and how I might need an MRI and all this scary stuff.
BUT - my GP (I think) is only going to test my TSH and free T4 and these will both look fine (as above). So she's not going to refer me, right?? Or can she still refer me? I can show her these blood results with T3 etc, but they are not NHS results. (Although they are done in an NHS lab.)
Just a reminder... Before ever going on thyroid meds last year, my results were pretty normal:
INUVI venous draw
On no meds
TSH 1.37 (0.270-4.2)
free T3 3.9 (3.1-6.8)
free T4 18.6 (12-22)
rT3 32 (8-31)
The issue was a low in range T3 and a high rT3. I was given a tiny dose of 15mcg of T3 to see if it helped, due to my severe night time symptoms (which I now think were estrogen related).
It didn't help but it sent my T4 below range (which is normal for T3) - and my old doctor freaked because she didn't realise it is normal for T4 to go below range on T3 only. So she insisted I start 50mcg of T4 and then my TSH got suppressed. I was only on thyroid meds for a year and my TSH was only suppressed for 7 months. Whilst on them, I did a reverse diet, got up to eating 2400 calories a day, high protein - and then, since the thyroid meds didn't help my night time symptoms, I weaned off them.
And now this...
I was thinking - oh no - I guess I just have to be on some amount of thyroid meds forever, then. And that was bad enough and needed some adjusting to. And now this person on FB (who is not in the UK) has freaked me out even more by telling me I need to go get scans and tests and MRIs on my pituitary done. Does anyone know about any of this????
Arrrgggg.. You think you've turned a corner with all this health crap and then there is the next thing.... Will there come a point where I am just living life again?
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Hi Joziel, I can’t answer this properly now as got guests in. But we’re in similar circumstances albeit from different starting angles.; you’re hypo and I’m hyper.
I’ve found an okay-ish Endo and we’re trying to kickstart my low TSH and zero T4 using anti thyroid meds to take my T3 down to bottom of the range- mine are standard T3 ranges of 3.6 to 6. 8.(standard NHSRanges)started. So we’re both trying to get my thyroid to produce it’s own, in range t3,t4 and TSH.
I’m 6 weeks into Anti thyroid meds, t3 has reduced from 40 to 8 so still over range. By next week my T3 will be at the low end of the range and likely give me hypo systems. In this 6 weeks my TSH hasn’t improved and my T4 is still zero.
My Endo has told me the once suppressed TSH could take 6 months to improve and another 6 months to get in lowest of ranges. Could it be that to need longer for the TSH to climb?
I’m concerned about what I’ll do next week when I’ve got very low T3, no T4 and TSH takes poss 6 months to perform. I think I’ve hypo systems now and some hyper thyroid ones remaining.
I’ll answer your Q’s tomorrow when guests have gone.
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Joziel please stop freaking out.
Before you start worrying about central hypo, have you ever had thyroid antibodies tested?
Looking at your results, before you took any thyroid meds your fT3 was low. Now your frees are both struggling.
TSH is a pituitary hormone that signals to your thyroid to produce more hormones. I think that's why someone has told you about central hypo as your TSH doesn't reflect your levels of frees. This could just be that it needs time to catch up after your body getting confused with the chopping and changing that's been going on.
Don't get hung up on reverse T3. It doesn't actually do anything to you and certainly doesn't block T3 from doing it's thing.
Looking at your latest results, I'm not surprised that you're having issues with hair loss, cold feet, terrible sleep, slow metabolism and dry skin. These are all typical hypo symptoms. Believe me, I've had them all and more ::)
Chin up girl. You will be well again. :)
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Sorry you're dealing with this.
I'm not particularly well versed in thyroid conditions but did have an empirical trial of T4 and T3 treatment myself whilst waiting for my pacemaker.
I do know that it can take months after stopping treatment for your own system to revert to baseline.
High cortisol can also suppress the HPT axis - if our cave dwelling sisters were facing a prolonged stressor such as famine they would want to shut down their metabolism to conserve precious calories.
You are unlikely to get any help from the NHS with this as your T4 and TSH are in range, and most GPs will not test T3 - they are strongly discouraged and it may not even be possible to select T3 as a test from the primary care dashboard.
This is due to the cost of T3 - the logic is if nobody is tested, nobody needs treatment.
I think the best person to seek advice from on this issue is the thyroid specialist who prescribed your treatment.
Either they can reassure you that central hypo is not a concern, and manage your hypothyroid symptoms, or they can recommend appropriate investigation - they may be able to write a letter to the NHS advocating for this if so, which can be really helpful.
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Why am I not surprised ::)
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Thanks folks. Amanda that is very interesting. So - do you have Graves? Why is your T3 so high? And how can it be, if your T4 is zero - where is the T3 coming from?!
I'm very interested that your endo has said it can take 6 months. I have tried to find this out but all I can find is that it can take 6 months for TSH to recover to normal range. And my TSH is in normal range. That's the problem - it shouldn't be. I mean, my other thyroid hormones are not likely to increase if my TSH isn't requesting that...
I just don't know how to get out of this situation, because if I get back onto thyroid meds, how is that going to support my TSH recovery? On the other hand I can't live this hypo for up to 6 months....
I did find this paper which was interesting in terms of eating disorders and thyroid stuff: https://pubmed.ncbi.nlm.nih.gov/3114819/
It talks about "normal basal levels of serum TSH with normal or delayed responses to TRH. " And " A delayed TSH response to TRH was noted in 66% of patients, hyporesponsiveness was seen in another 24%, and a normal response in only 10%. " That would fit with my increased prolactin, which is responding like it's supposed to, to TRH - whilst my TSH isn't.
I have always been a just-normal BMI, I mean I haven't been formally diagnosed with an eating disorder or hospitalised. I would just eat for a day and then fast for many days because my metabolism got so slow that eating normally for that one day would then take many days of fasting to get over. I did this all my life, I couldn't see an alternative. A few years ago I tried to 'just eat normally'. After 2 months I'd gained about 2 stone and I decided to call a halt to the experiment. It seemed that my body would hold onto anything I ate after a lifetime of deprivation. Whilst on thyroid meds, I discovered I could override all this. I could actually eat normally and my metabolism sped up to be that of a normal person's. It was life-changing. (Socially, personally, in every way. If I need to be on thyroid meds to live like that, I will be - it's a quality of life thing.) I reverse dieted up to 2400 calories. Then I came off the thyroid meds and tried to maintain all that, thinking that now I was eating normally and regularly and high protein, things would be okay. And this is what's happened. I am still eating, but my metabolism has slowed. Not to what it was before I went on the thyroid meds, but slower than when I was on them. Which is to be expected, looking at that thyroid panel.
SundayGirl, I've been dealing with thyroid stuff for a year now so I know all that. rT3 is relevant - but only in the context of the rest of the thyroid panel. My antibodies are always normal. They have been tested many times, including just now.
Bombshell, I've contacted the thyroid doctor I was seeing to ask if he can fit me in, as the next appointment he has online is January. I'm a bit reluctant to involve my NHS GP as it would mean sharing these results which have the high estradiol result on them (890pmol). I've since reduced my gel dose, aiming for 650pmol - but I don't want her to start refusing to prescribe my high dose E or I'll be in a mess as I can't afford these doses privately. :-\ I tried cutting the gel out totally and just using 200mcg patches, but I got the horrible night time meno anxiety back, so that was taking me too low - so I halved the dose to 3 pumps at night only. (I was doing 3 in the AM and PM.)
I have people telling me I should book a private head/brain MRI to check my pituitary and also get a private ACTH blood test done.... Everything is just so expensive and the NHS is so crap with both meno and thyroid stuff. I think about getting health insurance but it would now exclude all this ::)
If I don't suppress my TSH (because I don't take enough T3 to suppress it), will that enable it to recover? And then I can gradually wean off this 15mcg of T3 I'm on?
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Joziel I have a feeling that you're overthinking everything.
What exactly do you mean by TSH recovery?
And can you expand on this bit below.
rT3 is relevant - but only in the context of the rest of the thyroid panel.
Oh and as an aside, I don't have, and never have had, any Thyroid antibodies. I still have thyroid disease and a well below range TSH.
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Just to add that hypopituitarism is rare and not usually caused by brain tumours.
You would also almost certainly have other symptoms, including amenorrhea (as no gonadotrophins) and LOW cortisol (as no ACTH).
I wouldn't bankrupt yourself on private brain scans based on the comments of people online who may have kind intentions but are almost certainly not clinicians.
If your specialist has the remotest suspicion of any structural pathology they can feed you back into the NHS with a referral that will carry a lot more weight than going to your GP and saying you think you have a condition that is as rare as rocking horse manure, based on lab tests they will regard as normal.
Mine took about 8 months to return to within "normal limits", by which I mean bottom of the range, and slightly lower than before treatment.
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SundayGirl, my TSH should be very high, demanding more thyroid hormones - given how low mine are. It would actually be more reassuring to have a high TSH because it would mean that my other levels could be expected to increase in coming weeks. Without that, things will stay the same, as they have between the 6 and 10 wks tests. What is happening is what's described in the abstract to this article: https://pubmed.ncbi.nlm.nih.gov/3114819/
Basically, the TRH (not TSH) should trigger both TSH and prolactin to rise. Since my prolactin has risen, that suggests that the TRH is being produced as normal and should be triggering TSH to rise as well. But that's not happening. If I now go back on a TSH suppressive dose of thyroid meds, it will never happen. So I am thinking I need to take a low dose of meds to take the worst of the hypo symptoms away but without suppressing TSH, giving my TSH time to 'realise' it is no longer suppressed - which may take some months - and then potentially to very gradually wean off this 15mcg of T3 I'm on, possibly re-testing each time I reduce by 5mcg. I might never get off entirely and it might be good for me to always take this low dose and I'm prepared for that as well - I don't want to come off and be suboptimal, since low T3 is implicated for loads of different health conditions. I just don't want to be full-on thyroid meds unless I really need that.
With the rT3, you will always make some rT3 because T4 will always become rT3 and also T3. Where things go wrong, is when too much rT3 is made in proportion to T3. For example, my rT3 on that test I did 6wks after coming off is 17 and mid-range. That would be totally fine if my T3 was also mid to high range. But to have a T3 which is far below range and a rT3 which is so 'normal' and mid-range is a bad combination.
It's about the ratio and balance rather than one result by itself.
Bombshll, thanks. I think I just had a migraine last night whilst this person on social media was terrifying me and I could feel my cortisol and adrenaline going up (right before bed unfortunately) - and then had a crappy night with 4-5 hours sleep again.
Can you give me more details about how your results took 8 months to return to normal? What dosage were you on, of T4 and T3? And do you have the results from when you came off? All I can find is stuff about TSH itself normalising and it taking a while, but not about T3 and T4 remaining low (and unchanging) whilst TSH is normal. I am thinking that your TSH was high??
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Hi Joziel, I totally understand you not wanting to be hypo for 6 months. I’m trying to accept that’s what I’m looking at too, my 6 months doesn’t even start until my T3 reading get’s under 6.8 and I’m constantly cold now, so think hypo is near. Hyper symptoms have lessened thank God.
I asked the Endo if they’d add levothyroxine if I couldn’t manage with hypo symptoms. I was told not for the first 6 months as that will dissuade the TSH to operate normally. She said TSH can be slow to respond but they want to see if it can.
Your last blood tests at 6 & 10 weeks show a slight TSH increase, I think that’s positive as it’s signifying more hormones are needed.
You’ve sorted out your nutrition, Estrogen levels and are working out, maybe your body needs more time to coordinate the changes and trust these changes are the new normal? They say HRT changes take 3 months to settle and hours of thyroid research suggest the thyroid needs even longer! I’m not a patient person so I understand your frustration too!
Your original thyroid results from INUVI are identical to my normal/pre Hyper chaos taken 3 years ago. I was eating low carb and think this dropped my T3 reading but I had no thyroid symptoms and was hiking for 8 months solid, fittest I’ve ever been. I’ve never tested rT3, I think you’re right to attribute it to fasting.
I have a ‘diagnosis’ of T3 Toxicosis. Cause unknown. It isn’t autoimmune, not Graves, no thyroid nodule found. I’ve had my diet scrutinised, done a low iodine 6 week food plan, stopped all supplements and gone grass fed, gluten free etc. T3 doubled on iodine restricted menu and lost more weight.
Tomorrow I’ve got a PET scan, Wednesday a DEXA, Friday another Uptake test. A smear on Thursday, deep joy not! Somewhere in here I need to do a full time job and have 3 dogs and horses to exercise.
Be careful with going private for diagnostic tests for thyroid, if possible get your GP involved to go NHS route, numerous scans soon cost a fortune. It can take a long time to get to see an NHS Endo, but worth it. I have private healthcare and it does not cover chronic conditions, I’m not sure if all thyroid issues are classed as chronic but I chose not to involve insurers.
When is your next blood test?
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I think you have a confused view of the HPT feedback loop.
SundayGirl, It would actually be more reassuring to have a high TSH because it would mean that my other levels could be expected to increase in coming weeks.
Not necessarily if your thyroid is failing.
So I am thinking I need to take a low dose of meds to take the worst of the hypo symptoms away but without suppressing TSH, giving my TSH time to 'realise' it is no longer suppressed
This won't work in the way you want it to. Thyroid medication actually replaces what your thyroid should be making. It doesn't act in addition to what your thyroid is making. If you go down this route, your TSH will drop as the HPT feedback loop is compromised by the addition of Levo/lio.
By the way, your TSH is in no way suppressed. In fact, it's higher than the majority of people who do NOT have thyroid issues. (A TSH of 0.04 - now that is suppressed. ;) )
With the rT3, you will always make some rT3 because T4 will always become rT3 and also T3. Where things go wrong, is when too much rT3 is made in proportion to T3. For example, my rT3 on that test I did 6wks after coming off is 17 and mid-range. That would be totally fine if my T3 was also mid to high range. But to have a T3 which is far below range and a rT3 which is so 'normal' and mid-range is a bad combination.
It's about the ratio and balance rather than one result by itself.
There are many reasons for rT3 and yes everyone has some in their body. One explanation for high rT3 is a very high T4. In this case your body converts excess T4 to rT3. Another reason is your body has problems converting T4 to T3. I have a feeling that the doctor you saw may have picked up on a possible conversion issue with you which is why you were prescribed Liothyronine.
rT3 is totally inert and is expelled from your body really quickly. The important ratio is the T4/T3 one.
The tests you had after 6 weeks and 10 weeks off all thyroid replacement not only show a low T3 but also a low T4. Your low T3 is a result of this as your body needs T4 in order to convert it to T3. If those were my results, I'd prefer to go back on Levothyroxine and monitor my T4/T3 conversion especially considering that your TSH is rising.
(I've been hypothyroid for many years now so would hope that I know what I'm talking about)
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Amanda, my next blood test isn't booked. I think I will wait to see what my thyroid doctor has to say about it all. My original plan had been to stay on 15mcg T3 for 6wks and then re-test and see what that was doing. Obviously if symptoms are really bad or unbearable I might need to revisit that idea. I don't mind staying on this dose long-term, I was on it to start with and have labs on it - but my ignorant original doctor (who is also a private thyroid doctor!) insisted I start T4 when the 15mcg of T3 sent my T4 below range. That was enough to suppress my TSH and then it was a much bigger deal to get off meds.
SundayGirl, sorry but thyroid medication doesn't necessarily replace your thyroid - unless you take a high enough dose to suppress TSH. Levo and lio work very differently. It is unusual to have suppressed TSH on levo only, in fact they try to avoid it.
You don't need to tell me what a suppressed TSH dose is ;D mine has been 0.007 for a lot of this year on 50mcg T4 and 45mcg T3.
If you suppress your TSH, you turn your thyroid hormone production right down to a tiny trickle. (It never totally turns off but it is dialled completely down.) You then need to replace those missing hormones with exogenous hormones - as in - fully replace them, because the TSH is dialled almost off. If you don't suppress the TSH, the T3 you take adds to what you already have. You can easily see this in my first labs after going on thyroid meds. Before thyroid meds:
TSH 1.37 (0.270-4.2)
free T3 3.9 (3.1-6.8 )
free T4 18.6 (12-22)
rT3 32 (8-31)
On 15mcg T3:
TSH 1.15
free T3 4.3 (3.1-6.8 )
free T4 9.7 (12-22)
Total T4 54 (59-154)
rT3 15 (8-31)
There is no way 15mcg of T3 is enough thyroid hormone to provide anyone with enough. It is in no way a replacement dose. It is working in an additive way, to boost endogenous hormones. That is why my T3 is boosted here and my rT3 has been hugely reduced. This would be a good place for me to get back to, now - since it would keep my rT3 down and give me a little boost to the T3. It would also not worry my NHS GP because my TSH is not suppressed and that's all she tests for, like all GPs.
Unfortunately T3 also sends T4 right down, and it did that here. This freaked out my ex-thyroid doctor who insisted I start 50mcg of T4 as well. The addition of T4 suppressed my TSH, and some of that T4 got converted into rT3 (which is fine, because T3 was also good/high):
TSH 0.026 (0.270-4.2)
free T3 5.1 (3.1-6.8 )
free T4 13.8 (12-22)
rT3 20 (8-31)
It is a lot harder to come off meds if the TSH is suppressed because it takes longer for everything to get going again - much longer than if it had been shut down less with TSH not suppressed. Basically, you have to go through a period of feeling/being hypo because that's what is required for your thyroid to kick in again. This effect is much reduced if TSH isn't suppressed and is functioning, it will react more quickly to a dose change (if you are euthyroid, which I'd been assuming I was - but who knows now).
Yes, there was a difficult choice to make about whether to go back on a low T3 dose or whether to start a low T4 dose. Given that my body really likes to make rT3 from T4 - and will do that even when thyroid hormones are low, making things even worse (as it already is) - I opted for the low T3 dose. Especially as this is a dose I've been on before, and especially as I may end up remaining on this dose if I need to - rather than temporarily trying to fix things with it. After all, I don't know if I can improve on the kind of labs I had before going onto meds. It was a gamble to see if eating properly and consistently changed thyroid stuff for me, and getting back to those first set of labs on 15mcg of T3 could be a good place for me, keeping rT3 down and giving T3 a little boost. If I can stabilise here in terms of hypo symptoms, I could also wean slowly off - much more slowly than I just came off everything, - several months between each 5mcg reduction. I've never been on T4 only, as that wasn't going to help me with my original conversion issue - I would just have made more rT3 from it. So was reluctant to try something I'd never tried before, at this dodgy time.
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This won't work in the way you want it to. Thyroid medication actually replaces what your thyroid should be making. It doesn't act in addition to what your thyroid is making. If you go down this route, your TSH will drop as the HPT feedback loop is compromised by the addition of Levo/lio.
Thanks for posting this SundayGirl, this is exactly what my endo said. It makes more sense to me now.
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This won't work in the way you want it to. Thyroid medication actually replaces what your thyroid should be making. It doesn't act in addition to what your thyroid is making. If you go down this route, your TSH will drop as the HPT feedback loop is compromised by the addition of Levo/lio.
Thanks for posting this SundayGirl, this is exactly what my endo said. It makes more sense to me now.
You're very welcome Amanda :)
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Joziel you seem hell bent on ignoring everything except the bits that you think you understand.
SundayGirl, sorry but thyroid medication doesn't necessarily replace your thyroid - unless you take a high enough dose to suppress TSH.
You're wrong in your thinking with that. The clue is in the name - thyroid hormone replacement. Not medication. If you take any any amount of T4, then the HPT feedback loop takes account of the extra hormone circulating and therefore TSH will drop as your thyroid doesn't need to make as much T4 and T3.
Levo and lio work very differently.
Levo is T4 and Liothyronine is T3 and yes I do know they perform differently.
It is unusual to have suppressed TSH on levo only, in fact they try to avoid it.
Actually it's very common. Yes the medical profession (if that's who you mean by they) doesn't like it and will spout all sorts of nonsense about heart issues etc because TSH is the be-all and end-all, but for many people it's the only way that their T4 and T3 levels are correct for them.
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Bombshll,
Can you give me more details about how your results took 8 months to return to normal? What dosage were you on, of T4 and T3? And do you have the results from when you came off? All I can find is stuff about TSH itself normalising and it taking a while, but not about T3 and T4 remaining low (and unchanging) whilst TSH is normal. I am thinking that your TSH was high??
Hi, I was able to find results from the peak of my T3 treatment, and those 8 months after.
Peak T3 treatment - 75 mcg T4 and 35mcg T3
Tsh 0.03
T3 5.0
T4 10.7
Cholesterol - LDL 2.4 Total Chol 4.4
8 months after stopping, on no thyroid treatment
TSH 2.8
T3 3.2
T4 12.0
Cholesterol LDL 3.5 Total chol 5.5
(these were very similar to baseline bloods I had done before starting, I think my TSH had been 2.2, t3 3.something and T4 12.something. Cholesterol also virtually the same)
I didn't test earlier than 8 months after stopping.
Having established that whilst treatment did improve longstanding symptoms suggestive of hypothyroidism - sluggish metabolism and GI transit and lifestyle independent raised cholesterol (all of which I had long before the brain injury which left me with severe dysautonomia affecting my heart rate), it was unable to increase my resting HR above 50, and because I only did the trial to see if I could avoid a pacemaker, I weaned down by about 5mcg a week and stopped T3 completely the day before my pacemaker was sited and afterwards did a similar fairly quick taper off T4.
If money and access to treatment were no object, I probably would have stayed on some form of T3 based therapy long term, however I feared becoming dependent on this since it is not provided by the NHS. Even with a private prescription there were issues sourcing the T3, and it was essentially just a really expensive laxative, anti reflux med and statin rolled into one.
I did just want to mention the cholesterol in case this is of interest to you because whilst I knew that raised "bad" cholesterol can be caused by sluggish thyroid function, it was really quite an eye opener to see this in action in my case. If you have had a lipid panel done at various points in your journey this may be an additional tool by which you can track your thyroid hormone activity.
I have never at any point had a high TSH. Ironically in the wake of my brain injury I was tested for hypopituitarism, which I did not have, although I do have dysautonomic hypoaldosteronism and mild DI.
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Hi joziel,
I am the same as you. I am 48 and was a poor absorber. I was sent to newson and they increased my dose from 100 patch to 100 patch and 6 pumps of oestrogen. It’s basically like 10 pumps. At first I felt great but my body struggled and I started to have sleep problems and then within 4 weeks full on insomnia. I also struggle with little jerks. My anxiety is also bad.
I have been told two things. One my body did not like the increase in oestrogen and caused something called oestrogen dominance. I have also been told it kicked of a histamine intolerance. Both cause insomnia and jerks.
So my gp dropped my oestrogen back to a 100 patch. I found a doctor in the US treating the histamine intolerance. I have been out on an antihistamine for 3 weeks and told to tapper off over the next week, a specific probiotic and something called DIM. I am hoping they can fix this. It is so stressful.
X
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Bombsh3ll - it's always best to include the reference interval when posting results - lab ranges vary. Without this, it's just a meaningless number.
...... however I feared becoming dependent on this since it is not provided by the NHS.
Liothyronine is most definitely available via an NHS Endo.
Even with a private prescription there were issues sourcing the T3,
Liothyronine is easily sourced from many pharmacies.
.....and it was essentially just a really expensive laxative, anti reflux med and statin rolled into one.
You've posted some very dubious things over the past months but this just takes the biscuit. ::)
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Hello again ladies.
As a Hashimoto Thyroiditis patient I am finding the discussion on thyroid problems very worrying. Suddenly everything seems so complicated!
Can someone reassure me that having TSH and T4 blood levels within the normal range is okay? My GP assures me that it is and that my Levothyroxine medication is doing a good job.
I spend too much time fretting about my HRT, I certainly don't want anything else to worry about lol.
No offence intended ladies and take care.
K.
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Hello again ladies.
As a Hashimoto Thyroiditis patient I am finding the discussion on thyroid problems very worrying. Suddenly everything seems so complicated!
Can someone reassure me that having TSH and T4 blood levels within the normal range is okay? My GP assures me that it is and that my Levothyroxine medication is doing a good job.
I spend too much time fretting about my HRT, I certainly don't want anything else to worry about lol.
No offence intended ladies and take care.
K.
If you feel well on your current treatment and have no residual hypothyroid symptoms that is all the proof you need :)
Most people treated with levothyroxine can convert this to T3 without any problems.
I do not have a diagnosed thyroid disorder, but undertook a trial of treatment based on symptoms and clinical evaluation (including the fact I had a resting heart rate of 42), with a private specialist who agreed it was reasonable to make sure I was not one of the very small group of people who have either almost, or actually, ended up with a pacemaker who turn out to have untreated or suboptimally treated hypothyroidism.
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SundayGirl, I find your tone really combative, insulting and rude - not just towards me, but towards others (bombshll) as well, whose views I really respect and value. You're (of course) welcome to participate in this thread, as anyone is, but I won't be engaging with you.
Bombshll, I know what you mean about T3 and not wanting to end up on it long-term if you can help it. I also didn't want to, for the same reasons so i definitely don't find that a 'dubious' thing to say. You are very right that (whilst not impossible) it is extremely difficult to get it on the NHS - and it is really expensive (especially if you need a decent amount of it, I am hoping if I need 15mcg dose long-term, it will be affordable - when I was on 45mcg, I was burning through it). However, I also know that having low T3 (even low in range) has loads of health implications. (Like people with low in range T3 are more likely to have cardiovascular issues, dementia etc). So I definitely want to optimise things with my thyroid and if that means staying on meds then i will. There is also a quality of life thing, because I had a very slow metabolism before - and could hardly eat anything without gaining weight. Being able to actually eat a decent number of calories has been life changing and enabled me to go out to social meals and basically live life again...
I also have a slow resting pulse, it's about 54bpm. Maybe not as slow as yours, but after I had surgery for endometriosis all the alarms kept going off because my pulse was so slow and i had to tell them it was normal for me... At night my pulse is 38bpm in my sleep. On this 15mcg T3 it has raised to 42bpm, which is probably a good thing.
kathleen, the most important number to look at is your T3. Not your TSH or free T4. You do want to know those as well but it's like trying to understand what's going on without the full picture. For eg, at the moment my TSH is normal and my free T4 is in range (just) - but my T3 is way below range and I feel awful. If I didn't know my free T3, I wouldn't have the info I need. Unfortunately the NHS doesn't test T3 in most thyroid patients via GP so you have to do this test privately. But also how you feel is very important too. Just as with HRT it's a very individual thing and one person will feel fine with numbers that would make someone else feel really bad.
cs24, my understanding of what's happened (for me) isn't quite the same as what you say there. I am definitely a poor absorber and I am lucky to be with Newson and be able to get access to high doses. However, increasing the estrogen has helped me so much. I had turned a huge corner a couple of months ago, by increasing it. Then I weaned off thyroid meds and I think basically the symptoms of low estrogen and low thyroid are very similar. So now I am working on the belief that my estrogen is in a good place but my thyroid levels need to get back where they were. I have explored histamine intolerance about 2 years ago, with a low histamine diet - it didn't help. And I don't believe in 'estrogen dominance' - there is no such thing, it is progesterone deficiency(!).
Don't forget that our bodies have estrogen up to 20,000pmol during pregnancy and around 1000-1200pmol during ovulation. Instead of focussing on the dose someone gives you, look at the serum estradiol levels. Many women need to be between 450-650pmol to be symptom-free during peri due to the fluctuations. At 890pmol, I was too high - unless I really needed to be there. I have heard of some women who need to maintain around 1000pmol to be without symptoms. I first tried cutting out the gel completely which should have taken me to around 550pmol (this is all worked out by dozens of blood tests during my period over 2 years on various dosages) - but this was too low and I got my symptoms back. So I halved the gel to 3 pumps at night and that seems to have done the trick, I reckon I should be around 650pmol now but will test again in 6wks and see. I still need to sort out the thyroid... but I don't think I can rush that if I want my own thyroid to recover.
I think there is a lot which isn't understood about the ovary-brain connection yet. When the ovaries fail, this communication also gets messed up - and the brain can react to this causing a lot of neurological symptoms. It's incredible all this hasn't been researched yet.
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SundayGirl, I find your tone really combative, insulting and rude - not just towards me, but towards others (bombshll) as well, whose views I really respect and value. You're (of course) welcome to participate in this thread, as anyone is, but I won't be engaging with you.
I'm welcome to participate in this thread? Gee thanks but no thanks.
So I'm combative, insulting and rude because I'm trying to share knowledge of a condition I have lived with for many years????? ???
I find it insulting that you have a "Joziel knows best" attitude with something that you have a very confused knowledge of.
I knew deep down that I was basically banging my head against a brick wall. You were very argumentative with some very knowledgeable and experienced people on another forum earlier this year. People that do a hell of a lot to help others understand their condition. You didn't hear what you wanted to hear there either.
I. GIVE. UP.
You carry on with your mutual appreciation society with someone who will not contradict you or tell you you're wrong. You're both obviously desperate for affirmation.
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Hello again ladies.
As a Hashimoto Thyroiditis patient I am finding the discussion on thyroid problems very worrying. Suddenly everything seems so complicated!
Can someone reassure me that having TSH and T4 blood levels within the normal range is okay? My GP assures me that it is and that my Levothyroxine medication is doing a good job.
I spend too much time fretting about my HRT, I certainly don't want anything else to worry about lol.
No offence intended ladies and take care.
K.
Yes thyroid disease can be complicated but on the flip side lots of people have well controlled hypothyroidism just taking Levo.
If you have no symptoms of hypothyroidism, then you are taking the correct replacement amount for you.
Please don't start worrying because of some of the things you have read on this thread. :)
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Joziel, iv flipped through this thread so apologies if iv missed stuff. Have you had covid or covid jabs as it’s well known both can affect T3, and TSH stays within range, Google it.
I have read covid attaches itself to the HPA and this then affects thyroid etc. This is me and I am on T4 but it’s not converting, Dr Momi tried me on T3 and it was a disaster as my cortisol is on the high side anyway. He was lost as to what to do. I have apt in Jan with someone else to try Armour and I’m scared tbh. My last T3 was 3.9 but before covid kicked off it was near 6!! I have long covid again since getting it in July. True nightmare.
A lot of women’s thyroids are out, even those on same meds for years.
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Hi Floral.... Sorry to hear you are still struggling and now with long Covid too.
Have you tried the supplement called Seriphos? Dr Momi actually recommended it to me. At first I thought I'd tried it, because I've tried other kinds of choline, Alpha GPC and phosphatydylcholine or however you spell it.... But Seriphos is different (according to ChatGPT anyway!!). I just started it and I'm hoping it will help with the high cortisol issues. Will report back. I also take zinc and ashwaganda late afternoon/early evening, since this is when my cortisol tended to be too high - on into the night. Have you done a 4 point saliva cortisol test and tried to time your T3 doses away from high cortisol times, whilst taking cortisol lowering supplements at those times? If I take too much T3 at times of day when my cortisol is high, I get hyper symptoms.
I'm about to try taking some of my P vaginally as well, to see if absorption of that is improved and perhaps I get cortisol lowering systemic effects more. (I'll take 200mg orally and 100mg vaginally I think, to start - rather than 300mg orally.)
I haven't had Covid, amazingly - no. I must be one of the few people in the world not to get it, perhaps they should study me ;D I did have the first 2 shots back when they came out a few years ago, AstraZeneca. I haven't had any boosters since. I got spooked by the experiences of my sister in law after a routine Covid booster - she ended up with myocarditis. But those AZ vaccines were 3 years ago now. So I can't really attribute it to those.
Do you have high rT3 with your T3 that low? Is the T4 converting to rt3 instead? I have major rT3 issues. I can't believe that even with my T3 way below range and my T4 low, my rT3 was already mid-range. I mean... WTF...
And have you tried micro-doses of the T3? They usually say 5mcg is the lowest dose - do you get responses just from that? You could split even smaller? I just think our bodies are not used to having these sudden injections of T3 sometimes and for some people more frequent doses of lower amounts seem to work better.
I am feeling MUCH better after just 5 days back on 50mcg T4. I am sleeping deeper and longer, and able to fall back asleep when I wake at 5.30am (what is it with 5.30am??). My feet are warmer. I'm pooping every day again (instead of 2-3 days). I can think better. I have way more energy. I weighed myself today and I've lost 3lbs with no change to my diet, just from starting T3 about 2 weeks ago and T4 5 days ago. I'm not even trying to lose weight and eating a normal amount, so will need to increase calories. I just hope all this continues. My hair is still falling out but I think that will take a few months to stop.
I do think there is some tinkering to do with the estrogen because the remaining sleep issues are due to that. I'm going to test again in the new year as I'm suspicious of this 893pmol result and whether that was just an anomaly due to fluctuations....
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Dear Joziel thank you for all your kind suggestions. I’m broken atm, covid has wrecked me, I’m so exhausted and low. Yes I do take Seriphos at night and I take high dose Ashwagandha. Dr Momi suggested all this and I had been improving though the T3 even at 2.5mcg had unbearable consequences. He didn’t know what else to do due to covid I guess. I changed to Dr Conway and she was going to start me on Armour but I said I’d wait til January to see if I’d recover more first. She said to start reducing T4 but I couldn’t deal with that because of my present health. Do u think I could change over to Armour without reducing T4 first when jan comes?
You have had a time of it yourself with all this hormonal stuff, I’m sorry I can’t helpxxx.
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Hmm, I don't know much about Armour as it's not something I've taken. My understanding is that taking T4 and T3 separately allows you to adjust each better (like taking separate E and P) but then some people just don't react well to levo and lio and do respond to Armour, so maybe it's worth a try.
With reducing T4, my experience has been that it takes at least a week after stopping it before I notice any changes - because it has such a long half life. And when I've restarted it, it takes about a week to build up to 50% of its final level in the blood. It will be at 75% after 2 weeks. But I begin to feel better about 5 days after starting it.
Which is all to say, you should be able to stop taking T4 for 5-7 days without noticing anything whatsoever, but it will also allow you to fade in the Armour. Hope that helps...
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Thanks Joziel. Trial and error that’s for sure!