Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: joziel on July 27, 2024, 12:36:56 AM
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Well it’s 1.15am and all my night time symptoms are back. I don’t know that I can continue with Sandrena as likely I’m going to get zero sleep…
I’m on 4mg Sandrena which is supposed to be 8 pumps of Oestrogel. I was on 12 pumps of gel but my serum estradiol was the same as 6 pumps at 328pmol so we weren’t sure which dose to match.
We are trying to get me up to 450-650. I’d also stuck a 50 patch on this last two weeks which I thought helped…
What am I going to do? I can try increasing Sandrena. If I go back to gel I need to ask my NHS GP to switch back again. And 12 pumps isn’t practical. And every time I change something via Newson it costs £££ to see the doctor.
I wish someone would just give me access to everything so I can figure this out myself. I have 3 boxes of 50 patches and 4 bottles of gel and a ton of Sandrena.
I just got up and put 4 pumps of gel on. So that should bring me to 12 pumps total if 4mg Sandrena is 8 pumps of gel!!!!?
How hard can this be…..!!! I’m supposed to stick to 4mg for a month but if it’s going to mean zero sleep I’m not doing that, I’d rather go back to gel. Should I;
1) Just increase Sandrena to 6mg? (12 pumps equivalent) Or 5mg?
2) Increase and split AM and Pm? ( it takes ages to dry which is hard at night)
3) Switch back to gel and call NHS GP on Monday and make appointment with Newson to see if I can introduce and increase patches and find some patch/gel combo that works… I haven’t explored patches higher than 75.
4) Ask to switch totally to patches at high dose. (300??)
I feel crap because it’s only the first night on Sandrena and I know we’re supposed to trial each dose for 4wks but I just can’t do it. It means no sleep, hypnic jerks, heart beating loud and fast…
I also feel like I should trial what Newson prescribes before asking my NHS doctor for it because I really don’t want her to start objecting to the high doses from Newson or me asking for changes. I can’t afford to pay for such high doses privately so need the NHS on board.
Off to take a trazodone now…
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Hi Joziel, I'm sorry you have had such a lousy night. I don't know if I this applies to you but had there been a time when you felt better on a lower dose of oestrogel before the different bottles etc were introduced? I'm only wondering whether for example you had been ok on the old bottles at say only three pumps of gel then that equivalent on Sandrena would be much less than 4 mg. More like 2mg for example. So you might possibly have given yourself a massive hit?
The other possibility is I think with Sandrena some people find it better splitting the dose too as it does seem to absorb really well and this can iron out peaks and troughs. So I agree this would definitely be worth a try. Also... If you feel ok during the day but it's the nighttime that's haywire then to me that's suggestive of fluctuation due to a big hit of oestrogen first thing then your levels are dropping at nighttime and your body doesn't like it?
It would be a shame for you to have to give up after only one day as any swap will take time to settle, although a bad night is enough to make you doubt yourself.
I switched to Sandrena after being given oestrodose which brought a return to brain fog etc. The clarity quickly came back and i felt much better. However I thought the Sandrena was then causing me palpitations so switched back - big mistake! I am now settled back onto Sandrena, splitting the dose evenly - i think this really helps deal with fluctuations and I sleep much better at nighttime too. This is the best I have felt so far along this journey.
I don't know whether any of that is any use to you.
Sorry, a lot of waffle there. If it were me, I would split the dose first before deciding to increase as you might get into more of a pickle. But whatever you do, expect a bit of a bumpy ride while your body adjusts. Perhaps keep a diary while you are swapping too as this might make it easier to understand what's going on. x
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Hello Joziel
I have been on Sandrena gel for some time and I agree that it takes longer to dry.
Perhaps the easiest thing to do is to increase the sachets to the equivalent of twelve pumps of gel and see how that goes. This should mean you are back to your previous dose of Oestrogen and if that works at least you will resolve your night time symptoms. With this experience you can then approach your GP and/ or Newson and work out a plan for splitting the dose.
I am sorry that I can't be of more help and I do sympathise.
Take care and sending hugs.
K.
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I am so sorry U feel uneasy on this, U R always so helpful to Members on the Forum.
:foryou:
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Might be getting close to time to admit defeat and try oral? Perhaps try the equivalent of 12 pumps first but it's looking as though sandrena won't be any better than anything else you've tried.
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I agree Sheila, I’m going to need a high dose of anything transdermal I think. I don’t want to try oral until I’m off the thyroid meds because those raise SHBG and so does oral estrogen. So I might get all my estrogen bound and unusable. But if this continues I’ll go back to the Oestrogel whilst I come off thyroid meds….
Last night at about 2am, I put 4 pumps of gel on & took a trazodone. By 3am I was asleep and then slept well (deeply, restfully) till 9am. I just woke up. I don’t think that was the trazodone because it only puts me into a light and crap sleep if the estrogen isn’t right.
And I agree with splitting the dose. But this is looking like being on 6mg Sandrena and splitting that. Where can I apply it? I don’t have another shower at night and I don’t want to reapply over the morning dose… I also don’t want to use my blood draw arm in case I contaminate it for draws.
Yesterday I did a sachet and a half on each inner thigh and a sachet on right outer arm. I don’t see how to stick to their recommended sites if I’m going to increase. I can just apply it elsewhere on my thighs, where I applied the Oestrogel…? Or maybe upper inner thighs and arm in the AM and lower inner thighs and arm in PM?
This is all made worse by how complicated it is to switch products as I have to get my Newson doctor involved each time (expensive) and then get her letter to my NHS GP and then make an appointment for her to approve the change and update my repeat prescriptions. ???
Anyway… going to increase Sandrena to 6mg and split the dose. This won’t be an increase on my 12 pumps though. I will need to go higher if I absorb these two the same. As 6mg = 12 pumps. So this really isn’t practical is it?? Because I still wasn’t in this magic 450-650 range even on 12 pumps. Is it worth even trying this really is my question…. Or am I just wasting time and should go back to Newson doctor… I feel like everyone is going to tell me to go away and try Sandrena for longer though.
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Is an implant a possibility?
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Sheila, the only thing I know about implants is from the US Facebook groups I'm on. They don't recommend them, because you can't adjust anything once one is in. They prefer injections. But that doesn't seem to be an option in the UK. I think I'd be too scared to try an implant. I don't know if Newson even offer them.
I think I should next investigate higher dose patches. I only got up to a 75 patch because my estradiol was then around 230 and I decided I wasn't absorbing patches well and I'd try the gel. I didn't know then, that I don't absorb anything well. But 3x 100 patches for eg would be a lot easier than all this gel. But I probably have to make a token effort of trying this Sandrena situation a bit longer.
Dotty, that info is very rough - and wrong. Look at the 'Standard dose' column in the same document: 2 pumps of gel = 1mg of Sandrena.
If that's the case then:
4 pumps of gel = 2mg Sandrena
6 pumps of gel = 3mg Sandrena
8 pumps of gel = 4mg Sandrena
10 gel = 5mg Sandrena
12 gel = 6mg Sandrena
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Hi Joziel,
I know the standard equivalence is 2 pumps = 1 sachet...
However, 1pump is 0.75mg of estradiol, so those standards don't really stack up, especially for the higher doses.
Obviously there are no exact equivalents due to absorption etc.
4 pumps of oestrogel gives (0.75 × 4) 3mg of estradiol. This, therefore would be the same as 3 sachets of Sandrena (not the 2 sachets stated)
One forum member suggested this is down to NHS cost cutting rather than absorption issues. I tend to agree.
I also agree taking a dose at night to try to help sleep.
Good luck with this x
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joziel, have you worked your way through all types of oestrogen gel available in the UK? In theory they are all supposed to be the same but in reality they are not. I've personally used Oestrogel and Estrogel in the UK but now I use a Spanish brand called Oestraclin which is very good.
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Banjo, this is interesting but my sleep deprived brain is struggling…
If 4 pumps of gel is 3mg Sandrena, 8 pumps is 6mg… right?
So as I was only able to absorb up to 6 pumps of gel (results about the same 325pmol for 6 and 12 pumps), I should be around that amount now…
Today I did 3mg AM and 3mg PM. Fingers crossed…. My symptoms are all at night.
Mary as far as I know we only have Oestrogel and Sandrena in the UK. There’s Lenzetto (spray) but it’s pretty weak and I seem to need such a high dose it probably wouldn’t be practical.
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Better night. About as good as 12 pumps of gel. 😂 Slept well till 4am. Then woke very hot but not sweating. 🥵 (This is because I get inner tremors in my sleep which act like shivering somehow and make me hot.). Put the fan on and managed to go back to sleep Not as good sleep after than but managed till 8am. Woke at 8 to find my heart beating fast (90bpm).
This is how things were on the gel too - and why we wanted to get levels higher to see if we could fix things more. I don’t think I can go higher than 6mg Sandrena so at this rate will end up trying high dose patches next… 😬
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Hello 2am. ;D ;D
Well this Sandrena thing isn’t going well. Practically it takes about 45min-1hr to dry and not be sticky. So I have to go upstairs about an hour before bed to put the evening dose on.
And all my night time symptoms have come back, including the very cold feet which need an electric blanket for 2 hours even in 28C 😬 Then the starting awake every time I drift off and the inner tremors. I know people might say to give it longer, but this is hell.
I just stuck a 50 patch on and will go back to 12 pumps of gel tomorrow and make an expensive appointment with the Newson dr again.
I am thinking maybe as my estradiol levels were the same on 12 as 6 pumps, that I should gradually decrease gel back to 6 and try increasing patches with a view to a gel and patch combo. Will discuss with doctor.
Are Estradots still having problems at the mo? They’re what I was on before…
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Hello Joziel
I am sorry that you are still having so much trouble.
For comparison I use one 1 mg Sandrena gel and I find it takes about 25 minutes to dry. The fact that yours takes so much longer may of course be due to the larger quantity or may indicate that you are not absorbing very well, which I guess you know already.
My most recent experience with pumps was that the gel was much more liquid and dried really quickly.
If gel in any form isn't suitable for you then a return to patches may be you best option.
Wishing you well and take care.
K.
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That's very interesting Kathleen. Do you mean your Sandrena is totally dry and not sticky after just 25mins? That's very different to me. It shouldn't make any difference that the quantity is larger because I'm not applying it over itself - each sachet is applied to its own area.
For sure, Oestrogel is much quicker.
I am writing an email to my Newson doctor. I dread how much all this is going to cost and getting my NHS GP to continue to change my prescription via letters from Newson...
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Hi joziel I just wanted to respond to your concern about SHBG being increased;
Are you on any androgen replacement because that lowers SHBG.
I am on Zoely (1.5mg oral estradiol) and take dhea.
My SHBG is 40 which is near the bottom of the female reference range.
Also that 240pmol/L from a 75mcg patch doesn't suggest poor absorption to me, it's perfectly reasonable (assuming most of it wasn't your own estradiol - I am not sure where you are in peri/menopause)
Don't forget these patches, developed in the wake of WHI when everyone was petrified, are only designed to give us enough estradiol to keep us off the floor, not to thrive.
You may be able to achieve a therapeutic level by wearing 2 or 3 x 100mcg patches, assuming you can keep them on and don't itch with them!
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What is an androgen replacement? ;D Is that testosterone? Yes, I'm also on testosterone.
Good to know you are okay with SHBG on Zoely. Unfortunately thyroid hormones really increase SHBG, especially T3 (which I'm on a hefty whack of at 45mcg at the moment). So I'd be worried to add oral E into that. I mean, if it doesn't seem to work, is it really 'not working' or am I just not able to use it... I'm due to transition off thyroid meds (they were an experiment to see if it could be responsible for my terrible night time symptoms, but they haven't helped) so once I get off them, I would try oral if patch and gel combo hasn't helped.
I just re-checked my records and I didn't test on 75 patch, only on 50. On 50 patch it was 198pmol on one test, and 230pmol on another. I guess I made extra myself... But none of that is high enough for this 450-650 range I'm supposed to be trialling - to see if getting there fixes the night time symptoms. I agree HRT is not designed to give women optimal pre-menopausal levels but seems very conservatively dosed with worries about estrogen driving that.
I didn't itch with Estrodots before....
I am hoping to reduce my gel back down to 6 pumps and also increase patches up to at least 2x 100 and then re-test bloods. Dependent on what the results are there, I could continue to decrease gel and increase patches further. I'll ask my Newson doctor for 100 patches as I can cut them in half when I need 50. I made an appointment for a week's time.
At least I am not working this August ;D ;D
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Hello again Joziel
Yes my one sachet of Sandrena dries in about 25 - 30 mins. I probably have particularly porous skin lol.
I assume that you are spreading the contents of each sachet over an area of about two palm widths. I'm not sure where I learned that, it may be even have been on the patient information leaflet!
Wishing you well and take care.
K.
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That's really not awful for a 50mcg patch.
Are you still producing your own estradiol or is all/most of that from the patch?
Regarding the thyroid hormone - if your levels are normal on treatment, I can't see how this affects SHBG differently than if you were producing the T3 and T4 endogenously?
And yes by androgen I meant testosterone although I get mine from dhea due to both cost and absence of safety data for using testosterone with a combined pill whereas this does exist for dhea.
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It's not high enough (230) even for bone protection or whatever the minimal amount needed for that is. So it's pretty bad.
I have no idea how much estradiol I'm producing but yes, I am still peri and that was a couple of years ago now so some of that would have been mine too. Although I did test during my period to try to get an accurate idea.
With thyroid, it's well known that taking T3 raises SHBG. Don't ask me how, thyroid is very complex.
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No I know 230pmol/L isn't bone protective, and I wouldn't accept that level for myself either, but I meant if you could get that from a 50mcg patch, it's conceivable that you could achieve a therapeutic level with patches if you wore one or more 100mcg patches.
But you're right if you're not yet menopausal a significant proportion of that probably wasn't from the patch.
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Even if it was during my period? Actually, I don't remember if that test was. Early on, I hadn't figured out that was when it was best to test.
I'm just too worried to totally switch to patches now, after what just happened with Sandrena. I'd rather do a phase out of gel and a phase in of patches I think. Test when I'm about 50/50 and decide whether to keep going or hold there...
My task for this summer was to get off thyroid meds and if spend the whole time mucking around with estrogen, I'm not going to get around to that (as I don't want to do both at once!). Things are not perfect on 12 pumps of gel and a 50 patch but they are better than they've been before...
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Thyroid is a hormone that we require :-\ so why mess with that? These hormones have been running along side each other without problems until: how long ago did U begin to require thyroid treatment?
I don't think that we can overdose on oestrogen and do go on symptoms rather than testing levels as hormones fluctuate all the while. If U R finding some improvement on this regime could you add a 50 patch every 3rd dose for example? Replacement therapy isn't a sudden cure and needs time for the body to adjust to each hike/drop in regime.
If this is helping symptoms why not stick with the current thyroid levels and 12 pumps with the 50 patch for at least 3 months ?
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Because I don't need to be on thyroid meds and because there are serious health consequences if you stay on high dose thyroid meds when you don't need them.
Because they were trialled to see if they help my night time symptoms and they don't. I had a very normal thyroid panel with just low but in range T3 and high rT3.
Because they are highly likely creating a lot of SHBG which is binding to my estrogen and could be a huge reason I am unable to use the high doses of estrogen I'm taking.
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Tnx. Let us know how you get on!
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Because they are highly likely creating a lot of SHBG which is binding to my estrogen and could be a huge reason I am unable to use the high doses of estrogen I'm taking.
Hi Jo, I have very high T3 (no thyroid meds), I also have high SHBG of 90- I think this is connected. I’ve now increased HRT to counteract the high T3 and am using 100mcg Estradot Patch plus 6 pumps of Oestrogel gel. So far it has reduced my FT3 from 26 to 20.9 on NHS range of 3.6- 6.8 - but this is only 14 days.
I find the Estradot 100mcg patch’s to be far stronger than 2X 50mcg Estradot Patches AND the Oestrogel equivalent.
I was looking to switch to Sandrena, thanks for posting your info on drying times- they are too long for my lifestyle!
Bombshell - thanks for your info , I’m going to be looking into oral.
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Amanda, wow that's interesting on many levels.
Are you saying that increasing estrogen has reduced your T3...?
And with a T3 that high, you'd be hyperthyroid, no? Do you have Graves? (Did you mean high rT3? or T3?)
I am about to transition off T3. I'm currently on 50mcg T4 and 45mcg T3. The plan is to halve my T4 to 25mcg immediately when I start and to reduce T3 by 5mcg every 3 days. This all means it should take me about 3.5 weeks. Then I stop the last 25mcg of T4 at the end (will take a few weeks to fade away).
I'm very nervous about it all. I think I'm worried that I'm going to be hypo on the way off and gain a ton of weight. I'm not going to weigh myself until I'm out the other end and off meds, or I will freak out if I gain weight and drop calories hugely - which will slow my metabolism and make thyroid recovery harder and in the long run. This would just put me back with high rT3, which is the whole reason I went on thyroid meds in the first place. So I just have to be brave and get through it...
I do read that many people do this easily especially if their thyroids function, so I'm hoping I am just worrying about things which don't happen. My thyroid labs are actually low at the moment and yet I'm fine. My T4 is below range and my T3 is the bottom 21% of range. If I was staying on thyroid meds, I'd have been increased on my dose...
Good to know about the Estrodot patches! I am going to ask if I can go back to 12 pumps of gel for a couple more months whilst I get off thyroid meds and then transition off some gel and onto patches... Will update with what my Newson doctor says about this request on Thursday...
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Hi Joziel,
Your plan looks good, I totally get you being worried about what could happen as the symptoms have a rapid drastic affect on doing normal daily tasks like working. Hopefully you won’t get the hypo symptoms and if they start can you slow the T3 reduction to say 6 days etc?
RT3 - what a minefield! I’ve not had it tested and it hasn’t been mentioned by the Endo I see. I have an undetectable FT4 so am thinking mine will be low. There appears to be so many causes of high rT3, I used to eat very low carb which I see is now a possible cause so I now eat more fruit. Are you still doing the protein/calorie increase to speed up metabolism? If so how’s it going?
I’m undiagnosed, still under investigation. A month ago I stopped high dose Propanolol so expected T3 levels to increase further. It’s not Graves or nodules, the symptoms are the same as hyperthyroidism and have eased over the last 2 weeks. I can’t claim it’s because of an HRT increase as it could be a coincidence. I don’t know why my T3 levels shot up so I can’t know why they are dropping but this is the second decreasing T3 result since increasing so I’ll stick with the increase.
It’s really positive that you feel fine when your thyroid results are low. How has your sleep been since the lower results? My insomnia is off the scale with T3.
Good luck with reducing and can you get the scales out of the house?
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Yes, if I get symptoms I can slow down the decrease - only this might just prolong the misery. We need to get my TSH unsuppressed so my thyroid can kick in and start making hormones again. Pootling around and taking ages above the level where my TSH gets unsuppressed could just leave me hypo for no reason. It might be better to get quite low relatively quickly and then pause at a low dose whilst my thyroid gets working again. Body builders routinely use T3 only to cut before shows and the usual body builder approach is either just to stop it dead(!!) or to cut to 12-15mcg and hold there for 2-3 weeks whilst the thyroid gets working again.
I had to get my rT3 tested privately, but if your T4 is below range I don't think you need to worry about that.
Yes, I am still doing the high protein diet and I'm maintaining now around 2100 cals. I'm being very careful as I come off the thyroid meds and tracking everything. I work from home and otherwise I can get a bit snacky around the fridge ;D ;D
Do you have symptoms associated with your high T3? Like a ravenous appetite and fast metabolism?? Are you losing weight or doing runny poops? Or is this just an anomaly on bloods?
My sleep is a constant work in progress. It's the whole reason I started thyroid meds in the first place. I had a very normal looking thyroid panel before starting meds - except low in range T3 and high rT3:
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)
And we were looking for the cause of my night time symptoms, which were severe insomnia, heart beating hard and fast through the night, hypnic jerks any time I began to fall asleep, inability to get into deep sleep, inner tremors/shaking. Sometimes only 3 hours of light sleep a night. I couldn't function. So it was a bit of a trial to give me some thyroid meds due to that high rT3 and see if it did anything. It didn't do anything to these symptoms after all kinds of dosages (right through to T3 only up to 90mcg!), so it's time to come off now.
I haven't noticed any difference to my sleep on T3 but it is crap anyway because that was my original problem. It has improved a lot because I think I've been able to get my estrogen up a bit (now at 325pmol ish) but I want to try getting it even higher once I'm off the thyroid meds. Or maybe I will suddenly be able to use it better because my SHBG will drop...
With the scales, I seem to either want to weigh myself every day or never weigh myself at all (because I'm scared of what I will see, it's been so long ;D ) so I think I can do a month without weighing. The other factor is I've put A LOT of muscle on doing strength workouts 5x/wk with heavy dumb bells and eating high protein - I didn't really have much fat anyway but I've lost a lot of what I had too - so if the scale does go up I feel I can reassure myself it's muscle anyway. My body feels totally different. If I fold my arms, I'm distracted by my biceps. :o My glutes have become a shelf instead of a pancake ;D ;D ;D It's hard to imagine being lean and fit and muscular and also 'fat', so if I can focus on this ideal body type instead of an arbitrary number on some scales, I can free myself....
I did the first cut to T3 today, 5mcg reduced. On Weds I will halve the T4.....
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Okay, just had Newson Health phone appointment...
Scrapped Sandrena. The goal is some combo of patches and gel. Hopefully more patches than gel, but it depends what I can absorb.
I have to go down on the gel and up on the patches. :o
At the moment I'm on 8 pumps of Oestrogel, 2 sachets of Sandrena and a 50 patch. It's quite an estrogen cocktail ;D (I can't just throw out the Sandrena and the pharmacy won't take it back, so I'm using a sachet AM and PM and hoping this doesn't mess things up. Might need to adjust again when I finally stop it but as I have about 4 boxes of it, this will be ages ;D ) )
Will increase to 100 on the patch tomorrow.
Meanwhile I'm reducing the thyroid meds, I'm on the 2nd reduction of T3 now. 35mcg T3. And on 25mcg T4.
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UPDATE - OMG, I just had the best sleep I've had IN THE LAST THREE YEARS, since all this peri crap started ::) Two consecutive nights of it. I'm finally on the right path.
It's happened because I've finally got my estrogen up. (I know that, because I increased my patch dose to 75mcg and started to spot a day or two later - and then the amazing sleep started.)
So I'm now on 75mcg patch, 6 pumps of gel and 2 sachets of Sandrena a day. I'm not really supposed to be on the Sandrena but I have about 4 boxes of it, which is going to last forever and I can't bring myself to throw out precious estrogen. So I'm using a sachet AM and PM and hoping it helps the gel go further.
But really the plan is to get onto patches as much as I can and top up if necessary with gel. I am increasing patches again this Friday to 100mcg and decreasing gel. It remains to be seen where this goes but it's looking good.... Meanwhile I have an appointment with my NHS GP tomorrow, with the hope that she approves what Newson recommended.
Oh and currently I'm on 25mcg T4 and 25mcg T3, so I'm about halfway through weaning off thyroid meds without symptoms (yet).
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Hello Joziel
Thank you so much for your updates.
I think you are using every oestrogen product known to man at the moment lol.
Hopefully your GP will be supportive of your efforts and congratulations on the improved sleep, it is so reassuring when something actually works isn't it!
Take care and let us know how get on at your appointment tomorrow.
K.
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" I think you are using every oestrogen product known to man at the moment lol."
I don't think men know anything about estrogen products ;D ;D ;D ;D ;D ;D ;D ;D ;D