Please login or register.

Login with username, password and session length
Advanced search  

News:

Menopause Matters magazine ISSUE 81 out now. (Autumn issue, September 2025)

media

Author Topic: help please!! testogel- why does it affect me so badly?  (Read 5214 times)

vintagefiend

  • Member
  • *
  • Posts: 360
help please!! testogel- why does it affect me so badly?
« on: September 05, 2021, 06:08:41 PM »

Hello,

Ugh! i'm so fed up of this shit- i'd really appreciate anyone's take on my situation
sorry, it's a looong read:

i'm 49
ovaries and womb removed last november- was menopausal anyway (prev 2 yrs) and on estrogel which was fine just couldn't bear the progestogens (hence operation)
very pissed off that had my ovaries removed- feel very depressed about that- but that's where i'm at.
few months post op felt crappy, knackered- changed my estrogel to estradot patch but didnt help.
decided to try testosterone as read that ovaries actually continue to produce this so having mine removed has removed large chunk of supply (doc didnt tell me this)
i have tested my own testosterone sporadically over the last 2 or 3 years- (private company- finger prick test)
i know that my testosterone was v low even prior to ovary removal
i know it's not a massively accurate test and didnt have free testosterone checked but it has ranged from 0.08 to a max of 0.2 so extemely low anyway and i think this may have a bearing on how i tolerate it now.

i was prescrbed testogel (also continuing my 75 estradot patch)
in the first week i applied about a 30th of a sachet per day- ie a third of prescribed dose- wanted to be cautious!
over the following days had palpitations, awful dreams, acne especially on chin, anxiety and feelings of doom
so, after just 1 week i did a private blood test and T was over 10!! i.e. man levels!!
i also checked oestradiol and that was 760 or so, so quite high but just about within limits i think.
again, i don't know what my free testosterone was but it's safe to say i react hard and fast (and not in a good way) to testogel

this will sound odd but i decided to increase dose of testogel by about twice the amount- counterintuitive maybe, but i just wondered whether using the tiny amount i used initially was having a paradoxical effect (this was what happened when i first tried estrogel so there was method in it!)
turns out that wasn't the issue. i stuck with the new regime for a month until yesterday- the day before that i'd felt awful so couldnt face putting it on yesterday.
just to reiterate- my new, higher dose was still marginally less than outer dosage for women- 1 sachet lasting 17 days.
so had a break yesterday and felt better than day before
today i applied 1 thirtieth of a sachet (i have the measuring down to a fine art!!) thinking start really slow again
and here i am again with anxiety, very irritable (poor kids!!) the odd heart palpitation and feeling very down.

maybe i should cut down further, maybe i'm reaping what i've been applying for the last month, i just don't know and i know that docs won't be able to shed light on this
on the plus side i suppose i am having a reaction!
is it safe to say that my free testosterone is prob quite high too given that i have symptoms?
slightly off tangent but had blood pressure done in order to have the testogel and it was initially high coming down to just about ok on re-check (and obvs doc gave me the gel). i mention this as i normally have exceptionally low blood pressure- it's never even been  average so i was v surprised by the reading and i wonder if it's the estradot. i gather estradot is synthetic whereas estrogel natural?? i did try to go back on estrogel prior to testogel appointment (as it was the docs number 1 preference on account of being bio-identical) but felt crap quickly so gave up but think i'd like to be on it again- maybe that would help wth the testosterone treatment??

i don't know, i'm just brainstorming wildly!!
thank you for reading this epic rant.

Logged

sheila99

  • Member
  • *
  • Posts: 5956
Re: help please!! testogel- why does it affect me so badly?
« Reply #1 on: September 05, 2021, 06:57:17 PM »

Before you started testosterone you say you felt crappy and knackered. Can you elaborate? As you know fatigue can happen for numerous reasons. Did you have blood tests to rule out eg vit d, vit b12, thyroid etc? Just wondering if it's possible your symptoms weren't meno related. Assuming you didn't increase oestrogen when you started t then I would cut down your t a lot more (no idea of testogel dosage, I'm on Tostran). It does seem that some women don't need it at all and others need less than the prescribed dose. Perhaps you absorb it particularly well. Did you have any symptoms that are specific to low testosterone? Libido? Muscle weakness?
Your symptoms could also be from too much oestrogen. Sorry, I don't think I'm much help  :(
Logged

vintagefiend

  • Member
  • *
  • Posts: 360
Re: help please!! testogel- why does it affect me so badly?
« Reply #2 on: September 06, 2021, 09:07:44 AM »

thanks so much for replying, Sheila  :)

what you say makes sense- it is entirely possible that, a) i am feeling lethargic for other reasons and, b) i don't need as much T as others do and/or i absorb very quickly

I think i'm seeing a bit more clearly now that it's a new day; yesterday i felt so despondent

i have a new plan! i'm not going to change much cos that never goes well, but i'm going to lay off the T for at least a few days then attempt very small amounts if i feel up to it.

at some point down the line i'm going to try to switch back to estrogel and maybe a lower amount- i agree that i may be running a bit high on oestradiol

i'll also consider baseline bloods thyroid/vit D etc when i can be arsed!!

i'm also going to make a massive effort to get outside- i've basically been a hermit and get pretty worked up about going outside by myself these days- added to which walking sometimes feels like running a marathon! i know that this inertia will be compounding how i feel anyway

re symptoms of low T: i did have a drop in libido- from low to non-existent!- and that was what made me think of the oophorectomy's legacy on my T levels- but it could be due to something else- kind of hope so!!- i had switched from estrogel to estradot during this time and i wonder if it could be that. i did always have a modicum of libido on estrogel- now it's zero. have also been coming off prozac extremely slowly- still on 10mg  and not decreased for a few months now- struggled with discontinuation symptoms but these seem to have levelled out as far as i can tell.

there's always so much else that can muddy the waters, isn't there

thanks again for listening! it's really helpful for me to write this stuff down and figure out my thoughts :)

Logged

Wrensong

  • Member
  • *
  • Posts: 2240
Re: help please!! testogel- why does it affect me so badly?
« Reply #3 on: September 06, 2021, 09:43:07 AM »

Hi Vintagefiend, sorry to know you are still struggling with the HRT & I know it seems like a long time but if you're not yet a year since BSO (& like you I had that op postmenopause), it might take a little while yet to get you feeling better, so please don't give up hope.  Mine's still a work in progress 3 years on, so I really sympathise as it can feel like a marathon of endurance.

Your query about Estradot v Estrogel - both deliver oestradiol as you'll know, which is body identical.  Maybe have a look at the following link from Newson Health for reassurance?

https://www.menopausedoctor.co.uk/professionals/menopause-and-body-identical-hrt

I do wonder whether the palpitations etc could be because the 75mcg patch could be a bit much for you if your recent level was 760 postmenopause.  A senior, BMS approved gynae I saw recently said he'd aim for 300-500 with me (I'm late 50s, so a decade older than you).  But what we feel well on seems to vary so much between individuals.

That your T tested @ 10 after just a week on 1/30 sachet of Testogel seems astonishing to me.  I was making a sachet go 3-4 weeks instead of the 10 days prescribed (so roughly same as you) using a tiny amount every day & my level was 0.7 (mid range) when last tested.  If it was a finger prick test, any chance it was on a finger you'd used to apply the T?  Could you maybe get it tested with blood drawn from the arm next time?  I have mine done privately but a phlebotomist does it.

As an aside, I now apply T using the back of a teaspoon to make sure none gets on my fingers.

As you say if you are also coming off ADs that can really muddy the picture for you.  I'm sorry not to be able to suggest anything with more certainty.  :hug:
Wx
« Last Edit: September 06, 2021, 09:57:12 AM by Wrensong »
Logged

vintagefiend

  • Member
  • *
  • Posts: 360
Re: help please!! testogel- why does it affect me so badly?
« Reply #4 on: September 06, 2021, 08:04:05 PM »

hello again wrensong!

very kind of you to respond to my long post
and i so appreciate the words of comfort re the BSO- you're so right about the endurance :(
thats v helpful re blood oestrogen parameters- i would appear to be a bit high and to be honest i'm happy to go down (at some point- i'll go slowly!)
i did wonder if the testogel had maybe augmented my oestradiol reading as i had been kind of settled on the 75- tho not entirely- i did have the odd palpitation every morning
i know wht you mean re finger prick tests- i've accitendally had an oestradiol reading of 7000 odd when got some gel on my finger!
i now have glves, syringes to help with T application- arrived today so will start using tomorrow- if i decide to put it on- didnt use it today as couldnt face it
otherwise may try phlebotomist- ended up doing this for oestradiol when on estrogel
gosh, we spend a fortune on all this, don't we?
wll now check out link you sent  :)
Logged

Wrensong

  • Member
  • *
  • Posts: 2240
Re: help please!! testogel- why does it affect me so badly?
« Reply #5 on: September 06, 2021, 08:54:19 PM »

Hi vintagefiend, I should have posted the following link as well as it clearly shows the range of oestrogen replacement products classed as body identical, the two you were unsure about, Estrogel & Estradot included:-

https://www.menopausedoctor.co.uk/menopause/hrt-the-different-ingredients-brands-and-strengths-available

The oestrogen level range my gynae stated as optimal may have been with my osteopenia in mind & bearing in mind I am 9 years postmenopause.  You may need to be outside that range to feel well (above or below), so frustratingly it's all a case of persevering until you find best fit.

I don't know for sure, but doubt that tiny dose of Testogel would have had any bearing on your oestrogen level if you're thinking about the fact T is said to convert to E if we're not already sufficiently oestrogen replete.  If a sachet is lasting 30 days you could hardly have taken less, though you could perhaps resume on alternate days if you want to continue with it & you're wary of it now?

Yes, agreed it can all get expensive, what with private consultations, testing etc & we're not well off.  With other health conditions as well I've been desperate for better QOL though, so forego other things to go private for what the NHS has been unable to do for me.  I know many can't afford to do that at all, so I do feel lucky.  Will the NHS not test your levels until you're stable?  I haven't asked my GP to test T because I have to have other endocrine bloods done privately & get a package price, so it's less hassle to get the lot done together.
« Last Edit: September 06, 2021, 08:59:23 PM by Wrensong »
Logged

vintagefiend

  • Member
  • *
  • Posts: 360
Re: help please!! testogel- why does it affect me so badly?
« Reply #6 on: September 07, 2021, 02:17:26 PM »

thanks again, wrensong

interesting to see the various comparisons and they tally with what i had thought
what is interesting for me is that i swapped like for like dose-wise from gel to patches but had that slightly elevated reading on the estradot 75mcg, whereas 3 pumps gel daily had me running at about half that (i'd forgotten this fact but just rechecked previous private results)
this has really got me thinking- i reckon you may well be right re my oestrogen too high- certainly if that tiny amount T unlikely to cause elevation of patch oestradiol then i have to look at form of administration.
like you say, we're all a bit different and have to figure out our bespoke dose!! maybe patch absorbed better by me than the gel
that's a good idea re blood tests at GP- I'm sure they'll do it- they might not prescribe tesotgel but at least it's cutting some costs.
i actually had my hyst/bso done privately- had to get a medical loan- but there's nothing more important than this (though my house could do with some serious work!!)
Cheers x
Logged

Wrensong

  • Member
  • *
  • Posts: 2240
Re: help please!! testogel- why does it affect me so badly?
« Reply #7 on: September 07, 2021, 04:54:02 PM »

Many of us on here seem to absorb well from Estradot.  Bloods have consistently shown I get approx 4 times the level of oestradiol from Estradot compared with what I got from Evorel Conti.  I only used Estrogel for a short while & felt as though not absorbing it well, but wasn't tested while on it.  There does seem to be wide variation in how well we absorb from the different types of HRT, judging by reports on this forum.

Can you not get your GP to prescribe your Testogel from now on?  Mine was happy to do that at my consultant's request.

Like you, I've had some private surgery (needs must) & don't regret it, though the cost was a very big consideration.

Good luck with the tweaking.
Logged

vintagefiend

  • Member
  • *
  • Posts: 360
Re: help please!! testogel- why does it affect me so badly?
« Reply #8 on: September 08, 2021, 02:16:17 PM »

i haveny actually asked my gp re testogel- i will do so.
i can totally believe that about the estradot- i've been having palpitations/surges of adrenaline since ive been on it.
you obviously absorb it very well too!
no wonder it takes a while to get hrt right.
Logged

Mindfulmoomins

  • Member
  • *
  • Posts: 300
Re: help please!! testogel- why does it affect me so badly?
« Reply #9 on: September 08, 2021, 04:52:20 PM »

Hi Vintage,

Sorry to hear about your struggles with T. I hope you find a way forward soon.

I am also sorry to jump on your thread but I too have been offered a hysterectomy for progesterone intolerance. I am worried about making anything worse so would love to know if you have any thoughts? Do you feel better for not taking progesterone?

Thank you! Xx
Logged

vintagefiend

  • Member
  • *
  • Posts: 360
Re: help please!! testogel- why does it affect me so badly?
« Reply #10 on: September 09, 2021, 04:53:13 PM »

hi mindfulmoomins

thank you and i'm happy to be of assistance :)
without a doubt, a hysterectomy was the right idea for me- just wish i hadnt had ovaries removed or had at least given that part some thought!
caveat is that it may not have made a jot of difference if i'd kept ovaries but i'll never know
but, certainly not having to take progestogens is fantastic- no loss at all!!
i have read that even women who only have womb removed can experience ovarian failure to some degree but i'm not sure how likely this is- i suspect that many docs would say that doesn't happen anyway but i've certainly seen anecdotal evidence of this- so i guess it should be borne in mind??
no way could i face any more prog- hate that stuff!!
good luck in whatever you decide xx
Logged

ardee

  • First Flush
  • *
  • Posts: 1
Re: help please!! testogel- why does it affect me so badly?
« Reply #11 on: September 03, 2024, 04:29:05 PM »

Sorry to jump on your post but I wondered if you have any updates, 3 years on please?

 

I could have written your post (total hysterectomy some years ago for PMDD, on 75mcg oestrogen patches, on Testogel way below the recommended dose as levels at first blood test too high, coming off anti-depressants very slowly and having terrible mood swings and anxiety, low blood pressure).  I cannot take the anxiety any longer and am seriously considering going back onto a full dose of antidepressant.  Did you do that?  Did you find anything that helped?
Logged

vintagefiend

  • Member
  • *
  • Posts: 360
Re: help please!! testogel- why does it affect me so badly?
« Reply #12 on: October 04, 2024, 09:54:56 AM »

Hi ardee,

sorry just seen your post and so sorry that you're struggling
ah, I wish I could tell you something good but I continue to struggle myself!
I've actually come off all HRT as it makes me feel worse.
continue to decrease the prozac by tiny amounts- it doesn't help me so want off it!
I've had covid over the summer and I think that has sent me spiralling- my mood is awful- I don't know what to do.
Like you I'm thinking about the need for a different and full strength anti-depressant but I'm so reluctant as there really is no such thing as a free lunch- I so desperately wanted to sort this with hrt as I know this is hormonal and I don't want to be stuck on an anti-dep for life
I've deliberately lost over 2 stone in weight and have managed to start jogging- when my mental and physical state will allow- I am trying so fkn hard and just can't catch a break.
I know this isn't a me thing, I know it's something awry physiologically, but I can't get anywhere
apologies for vent and I sincerely hope you find something that works for you- sorry I can't be the bearer of better news
Just to give you the other side- I know of many women- online- who have had surgical meno and managed fine on no hrt- maybe after an initial hiccup- and obvs there are those who find hrt to be brilliant- so please don't think I represent the standard experience!!
I'm pretty sure I'm a bit of an outlier!

Logged

Moog77

  • Member
  • *
  • Posts: 64
Re: help please!! testogel- why does it affect me so badly?
« Reply #13 on: October 06, 2024, 07:57:43 PM »

Hi

I'm 47 on 2mg Sandrena and Utrogestan 2 weeks of my cycle.

I've tried testosterone twice and both times its affected me not in a good way. The second time I inadvertently was on twice the dose I should have been  - not all testosterone gave the same strength/dosage! - and tests showed my levels were v high as a result. It massively impacted mood and energy.

However after about 5 days of using it I did feel great for a day or 2. Like proper 'awake' and I suspect I probably will benefit from it at the correct dosage but I honestly can't be arsed trying just now.
Logged