Menopause Matters Forum

Menopause Discussion => Personal Experiences => Topic started by: TNM45689 on April 26, 2019, 04:02:57 PM

Title: Estrogen levels gone down despite an increase in dosage?!!
Post by: TNM45689 on April 26, 2019, 04:02:57 PM
Hi I have just had my latest bloods done (at request for Chelsea and Westminister) - my estrogen level is now 63 (as 100 in Jan) despite having my dosage increased from 50mg Estradot to 75mg. They really want to get my levels up as I have been diagnosed with osteoporosis. Has anyone else had similar? Any advice? Thanks
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Tc on April 26, 2019, 04:19:50 PM
TNM4. I have had exactly the same issue. My levels didnt rise at all on 4 pumps gel. I'm now on a high dose patch but don't feel its doing much either. Like you my levels are as though I am not even on HRT.
I just seem to struggle to absorb. I am, hopefully, being referred to C and W as the meno nurse told me it's the best place to sort this issue out. So it would seem you've gone to the right place
Sorry I dont have any answers it's the brain of my life at the moment. I was told its "unusual". I felt so alone with it but another lady on here had the same issue.and I thought I'd let you know you are not alone in this problem.
Xxx
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Joaniepat on April 26, 2019, 05:05:59 PM
Hi I have just had my latest bloods done (at request for Chelsea and Westminister) - my estrogen level is now 63 (as 100 in Jan) despite having my dosage increased from 50mg Estradot to 75mg. They really want to get my levels up as I have been diagnosed with osteoporosis. Has anyone else had similar? Any advice? Thanks

Hi, yes. I have had a similar situation. I also go to the Chelsea and Westminster, and have osteopaenia. On three pumps of Oestrogel I had less than 100pmol/l. They changed me to two 1mg Sandrena sachets, still only got to 140 pmol. Then they put me on 125 mcg Estradot and the last reading was a stunning 467 pmol! They have now reduced it to 100 Estradot. What did they suggest you do now? Switch to gel?

JP x

Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Saffy on April 26, 2019, 06:37:00 PM
Argh, it's a nightmare isn't it?! I was on Estradot 100 with levels of 100 pmol/L so meno specialist suggested trying different patches (Evorel) to see if I absorb differently - felt no better and was allergic to the adhesive. Then I tried 4 pumps of Oestrogel and also felt no better. I now use 2x100 Estradot and have finally managed to get my levels to 257 pmol/L but still don't feel any better ::).

If you haven't already you could try a variety of patches or gels to see if that helps or, if your SHBG levels are 'normal', then you could try pills instead. There is also the option of implants. For osteoporosis your levels need to be around 250 pmol/L or higher I believe.
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Tc on April 26, 2019, 06:47:55 PM
...and here are the other ladies in our little club.
Hi saffy hi JP.
We seem to be the "hard cases" when it comes to eastrogen.
It's nice to be different but not in this instance  :)
At least we know were not alone.
 :foryou:
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Saffy on April 26, 2019, 07:19:17 PM
Aww thanks TC :D. *Waves*

I'm actually sitting here having a hot flush - you know, those things I thought had gone a year ago  :o. Unbelievable! Think it's the flippin' progesterone causing it as it's been a bit rougher this month for some reason  ::).
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Tc on April 26, 2019, 07:54:43 PM
Saffy as soon as I change anything, even increasing eastrogen, they come back with avengence.
Have you changed anything in last month?
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Saffy on April 26, 2019, 11:38:49 PM
Sorry, I disappeared!

Pretty sure I've not changed anything TBH. Unless you count the vast quantities of chocolate I've managed to stuff in this week. I will have to test that link out more often  ;D. Some months just seem to be like this. By about day 6 of the progesterone my stomach is cramping a little, the tinnitus is screaming, I have sore, swollen breasts, my nose, eyes and ears are dry and itchy and constipation kicks in. No mood changes although I'm at peak apathy currently. Flushing isn't usual for me 'though  ::).
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Salad on April 27, 2019, 10:00:49 AM
Hi I have just had my latest bloods done (at request for Chelsea and Westminister) - my estrogen level is now 63 (as 100 in Jan) despite having my dosage increased from 50mg Estradot to 75mg. They really want to get my levels up as I have been diagnosed with osteoporosis. Has anyone else had similar? Any advice? Thanks

Hi, I was also seen at Chelsea and Westminster  :)
 My level was 194 nmol/L on Estradot 100 mcg. They prescribed me 200 mcg patches, 3 times a week and I got my level up to 600, to isolate symptoms not menopause related.
I was found to be Vitamin D deficient (which I corrected). The last 3 symptoms were then found to be Autoimmune disease related- Psoriatic Arthritis.
They also gave me permission to cut my patch to get to a level I was still menopause symptom fee - my current dose is 133 (ish) mcg but I still change 3 times a week.

Have you found a cause for your Osteoporosis?
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: TNM45689 on April 27, 2019, 07:38:55 PM
Thanks ladies - sad but it is reassuring to know that others are in the same boat.

I have an appointment on Thurs so will report back with what they suggest. I am so bloated and feel awful on 75mg (was fine on 50mg) that I really do not think I can go up any more....

They havent found cause of OP yet - low Vitamin D but I have now managed this....

Yikes this is hard work...

Thanks for your support.
xxx
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Tc on April 28, 2019, 03:09:43 PM
TNM4 good luck with your appt. Please let us know how you get on xx
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: AlphabettiSpaghetti on April 29, 2019, 10:50:57 PM
I have this prob too- on 4 pumps gel per day but levels are really low at about 40
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: TNM45689 on May 02, 2019, 07:20:48 PM
Hi - just a quick update. I had my apt with Mr Panay today. He suggests changing the patch every 3 days rather an 2 a week and lowering my dose to 65.5 rather than 75..and test my estrogen levels on day (I did on Day 1) in 6 weeks time..... we shall see..xx
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Salad on May 03, 2019, 07:26:21 AM
Hi - just a quick update. I had my apt with Mr Panay today. He suggests changing the patch every 3 days rather an 2 a week and lowering my dose to 65.5 rather than 75..and test my estrogen levels on day (I did on Day 1) in 6 weeks time..... we shall see..xx

Fingers crossed  :)

I think it's the three times weekly change of patches for me that gives me that ‘consistent ‘ feel- good luck.
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: TNM45689 on May 03, 2019, 08:41:32 AM
Oh fab - fingers crossed... it is weird how such small tweaks can make such a difference - it is such a minefield. x
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Tc on May 03, 2019, 01:29:46 PM
Thanks for the update. TNM.
So did he say to do the blood test on day 1 of patch?

Salad. Changing 3 times weekly. Do you put it on Monday and then change Thursday and Sunday for instance?

Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: TNM45689 on May 04, 2019, 08:35:26 AM
Blood test on Day 2...

Good question - he said every three days so if I change today do I change again on Tuesday then Friday etc

x
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Tc on May 04, 2019, 09:07:37 AM
I'm thinking the 3 days includes the day you take it. So say you put it on today saturday then I change it  Tuesday and then I change it  Friday. But I dont know if that's right. The 1/2 day thing did my head in. So that's how I've been doing it. The gp had a go at me though she said I shouldnt have run out. I told her they come off and have to be replaced which is true to a certain extent. She doesnt know I've been using 3 in a week instead of two!!
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: TNM45689 on May 04, 2019, 12:36:44 PM
 ;D TC
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: AlphabettiSpaghetti on May 20, 2019, 10:48:07 PM
I had a discussion with the consultant today who has increased my dose from 4 to 5 pumps per day. She said some ppl just don't absorb oestrogen very well, and I'm one of them (sigh...)
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: allie007 on May 21, 2019, 02:19:36 PM
What are your levels supposed to be? Im going to try and arrange some blood tests  privately because I still feel lousy on 100 Estradot. GP won't do any blood tests.
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: AlphabettiSpaghetti on May 29, 2019, 09:00:23 AM
I've increased to 5 pumps in the last week and my hot flushes are getting worse not better! I despair. Why is this happening??
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Salad on May 29, 2019, 09:49:25 AM
Salad. Changing 3 times weekly. Do you put it on Monday and then change Thursday and Sunday for instance?

Apologies, only just seen this  :)

Yes, they suggested Mon/Wed/Fri. It keeps the dose more constant.
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Tc on May 29, 2019, 11:32:12 AM
Hiya ladies. I posted yesterday but wanted to share and elaborate on non absorption.

I saw a different Gynae and she said There is a small but unfortunate group of women who don't absorb through skin. At last a doc finally said that. The others have treated me like a bit of a freak. Questioning me about how I'm applying gel or patches and giving me side eye as though they dont believe me or think I'm doing something wrong.

And finally one says  Non absorption transdermally is real. Unfortunately those of us in this apparent  minority are seen as "not fitting the box". Hence the docs I've seen previously didnt know what to do with me.

My level has remained well below normal post meno level  for someone not on HRT and has actually gone down despite being on 150 patch. No wonder my symptoms are getting worse and worse.

I understand the frustration. It makes you feel desperate. I might as well have been on nothing and it certainly feels that way symptom wise. At least on nothing I wouldnt have to deal with the dreaded progesterone. AND.....

 therein lies another issue which arises from non absorption. for me it led to an imbalance as I was taking continous utrogestan but with such low and ineffective E it lead to progesterone dominance. 
No doc will prescribe E without P to someone with a uterus. But  the facts are my blood E level is consistently well under post meno . I havent bled at all in all this time despite stopping the utrogestan for a month. My body is in the same position it would be in post meno without HRT and all that progesterone played havoc. She suggested that I take 200mg for 7 days.

I dont want to give up HRT yet. but t's  tougher for some of us to sort out. We are the eastrogen "hard cases"  it would seem!!

She offered pill but I want to give the implant a go.
C and W offer it to ladies with transdermal non absorption and I've been lucky to be referred there.

In the meantime its 2x100 patches but I honestly think I could cover myself in the blinking things from head to toe and not get anymore E into my bloodstream.

 I think it' is  important to monitor bloods for those who are symptomatic and have absorption issues .and it's certainly not unreasonable for us to want and expect that  If we choose to take HRT at least it should give us a blood level effective enough to benefit bone and cardio vascular health, if nothing else.

Xxx
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: AlphabettiSpaghetti on May 31, 2019, 08:33:30 PM
Can you tell me more about the implant? What are the pros and cons and why is it so difficult to get? Will I need to be referred to the Chelsea and Westminster? (Currently at John Radcliffe, Oxford)
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Tc on May 31, 2019, 10:45:19 PM
Alphabetti. I will let you know when I find out about the implant.
My gynae said it is not available in my local hospital and I either have to go to Barts or c and w. I'm in Essex. I dont know if it's available in other areas. I will look into it tommorow and let you know xxxxx
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: AlphabettiSpaghetti on June 01, 2019, 09:14:11 PM
Thanks TC I appreciate it. I can't carry on like this for much longer and really want to go back and see the consultant armed with all the info. I'd love to hear what you find out.
Title: Re: Estrogen levels gone down despite an increase in dosage?!!
Post by: Tc on June 01, 2019, 10:17:59 PM
Alphabetti.
I cant seem to link it on here.but if you Google Chelsea and Westminster menopause implant there's a pdf file which explains about the implant.
It says it is  a slow release estradiol only pellet which is 100% body/bio identical. It would seem they aim at getting levels between 300 and 600. It is permenant and is  active for 6 to 8 months. It says most women will have 50mg and the max is 75. 
t does say towards the end of its "life" you may need to "top it up" with patch or gel which is a bit worrying as I dont absorb  either.
It says risks are the same as transdermal HRT delivery.
I'm not sure if you have your uterus ALPHA but if you do, it says they recommend mirena coil as gold standard  for use with the implant.but other options can be discussed.
They also offer a testosterone implant.

I've summarised here  but have a look if you can at the file it gives much more info.

It says i"implants are  unlicensed but can be prescribed by specialists " which might explain the patchy availability. If you are interested I would suggest asking your doc/specialist as I'm not sure what is available in your area.

I have started a thread today asking for any ladies to share their experience of it for those of  us who are considering it. Keep your eye out for it. hopefully we will get some replies,

I'm in two minds about it  it's either try this or give up on HRT. I'm not over keen to try the other option, the pill, as I'm overweight, have been a smoker for many  years and have family history of blood clots. I guess it all comes down to risks and benefits. I have felt so awful I considered giving up HRT altogether  to see if I actually felt better off it  but my gynae is convinced I will feel better once we get my eastrogen levels up so that makes me think I should give it a shot.
Xxx