Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Chi chi]

Hi again everyone, if you've read any of my other posts you'll know I've been struggling with my HRT after an initial good phase. Since September ive felt low and down again and my anxiety is pretty bad also, not debilitating but a constant worry and stream of "what ifs".
I'm  being treated for low estrogen and testosterone since June this year, not sure if I'm peri or not? I've been on birth control pills since the age of 16 (I'm now 40) so in effect my periods have been controlled by this so I don't even know what my cycle or periods are like naturally?
I still have all my symptoms that I had before starting treatment such as anxiety, headaches everyday, aches and pains in joints, low mood, loss of libido, tiredness, etc etc. since starting treatment my stomach has got bigger/fatter more wobbly lol and for the last 2/3 weeks I've felt quite dizzy most days and sometimes have a weird ringing in my ears, don't think its tinnitus?? But it's weird, like a humming? I've also felt really jumpy especially at night in bed, my hubby checks his phone in bed and even the noise from that makes me jump!

I'm currently on 3 pumps of Oestrogel and a tube of Testim spread over 2 weeks, I am supposed to take Utrogestan each month but since my first attempt in September (felt awful) that's been delayed and haven't taken any since.
It was suggested by Prof Studd that I'm progesterone intolerant?
I'm just so fed up of not feeling right and wonder wether my hrt needs changing or tweaking or if I actually do need more progesterone? I seem to tick all the boxes for low progesterone. I'm even wondering if my bad experience the first time was because I "expected" it?
I keep reading about estrogen dominance and wonder if I have that? My level was on the low end of normal but I didn't have my progesterone tested so I don't know what that is.
Hubby keeps on at me to get in touch with Prof Studd but I really don't know what to say anymore that I haven't already said in previous emails, his replies are very vague and doesn't seem to answer any of my queries 

I'm just still so confused and really unsure where to go from here? 

Any comments, advice, or thoughts are really appreciated 
Thanks
Estelle

[CLKD]

Hi! many ladies don't fare well during the progesterone part of treatment.

the dizziness may be caused by a nerve at the back of the neck, if I bend backwards I sort of go 'oh' because my head feels woozy.  Or it could be postural hypertension i.e. giddy on standing?

When is your next review?

[Chi chi]

Thanks for your reply, My next review isn't for another 5 months  it happens wether I'm standing or sitting so not hypertension.
I did pull my neck/shoulder in my sleep about 3 weeks ago, was painful for days but seems ok now. I've had the dizziness since before then anyway.

[Suzyq]

I had dizzyness, headaches and extreme anxiety with too much estrogen and very low progesterone but I had testing consistently which showed me this! Sometimes you have to just try different things to work it out! Everybody seems to be of the opinion that progesterone is just a necessary evil, but for me I just cannot function at close to zero levels!! 5 months for a review is just unacceptable when you are seeing a private doctor! I can see my specialist every week if I need to (but I'm in canada). Hope you feel better soon xxx

[Suzi Q]

The first sign for me was Dizzieness when I was premno at 37 I had brain scans the lot
KNOWONE even considered pre meno not even me so t could be that? It seems a common symptom
It was dizzy and a ringing in my ears not a ringing as such but a BZZZZZZ noise it lasted over 18mnths
In the end after no results of brain tumors thank god I went to a Cjiropractor with in a month GONE!!!
That was over 23 years ago and occasionally I will get an attack I take a stemital asap and it goes
As for hormones Im sorry cant help I didnt take HRT for medical family genetic reason
i took the mini pill and ovestin vaginal cream maybe go back have a chat
if its not helping then maybe its not for you or the one oyur on isnt for you xxxx

[Chi chi]

Hi and thanks for the replies, I agree 5 months is too long especially as I'm not settled on my current treatment  after my initial appt my follow up was 3 months later, had that in September then at the end he said " well I'll see you in 6 months"!! We're only in there about 15/20 mins and that costs us £200 plus another hundred on train and tube! 
I am thinking that maybe my estrogen might be too high, but I also have a lot of low progesterone symptoms too, don't understand why this wasn't tested??
Suzyq do you feel better now? How often do you take progesterone and in what form? I Keep thinking about the cream??
SuzyQ so was it just a pulled muscle? Yeah with me it's just like my hearing goes very dull and a sort of muffled buzzy sound, doesn't last very long either.
I've also noticed that I feel like I have bruises at the tops of my arms and bottoms of my legs but there's no marks?? Almost like little hot spots that hurt when pressed.
My stomach is also massive! My mum actually asked me if I was pregnant 

[Suzyq]

Hi Estelle I started using ultrogestan 100 every day (vaginally) but have now switched to compounded progesterone cream - applied twice a day - this is made up for me by the compounding pharmacy on prescription. Please note though it took about 3 weeks for me to feel better when I started using progesterone daily.  Can you not ask your go to test your hormone levels? Specifically estrogen and progesterone. It's a right pain all this trial and error....

[Chi chi]

So I just spoke to Prof Studd, he said to go back to 4 pumps of oestrogel and to increase my testim back to 1 tube a week, he also said I could try taking the Utrogestan vaginally for 7 days each month. I asked about the prog cream but he said it doesn't work?? It obviously does for you!

He also suggested again about me having a hysterectomy  While I'm not totally against the idea (petrified of being put out tho ) I don't understand how it would help? I mean he's saying I'm prog intolorant but still need it, I haven't had any since beginning of sep and I still feel crap, the reason for the hysterectomy would be to remove the need for progesterone but as I haven't had any and still feel rubbish I dont understand 

I had my hormones checked back in June at my 1st appt and they were
Oestradiol 125 pmol
Testosterone 0.4

By my follow up appt 3 months later they had improved to
Oestradiol 1001
Testosterone 8.3 ( not sure if this is a mistake as there is a ? Against it and it says analytical interference, request fresh sample)

My progesterone has never been tested?

[Hurdity]

Hi Estelle

Just to clarify - you don't need to get your progesterone levels tested because if you are obtaining sufficient to protect the womb then this will be more than enough for its other functions in the body. The gynaecologist can determine whether you are having sufficient, from your bleeding pattern and from scanning the uterus.

Progesterone is extremely low and almost undetectable during the first two weeks of the menstrual cycle, as it is post-menopausally - and as above your bleeding pattern is an indication if you are getting sufficient, so it is not normally tested.

There are private practitioners in other parts of the world (not usual in the UK) who will make up prescriptions of progesterone cream at sufficient dose to protect the womb but this is extremely expensive. The best way to obtain sufficient progesterone for this purpose is to use the proprietary brand (ie Utrogestan) available through the NHS and to use it vaginally - which will minimise systemic absorption and negative side effects.

I can't remember your complete story but I know I have posted before and elsewhere about the difficulties in your case and commented on your oestrogen levels - and unfortunately I can't add anything further to what I said before because I'm not qualified to do so!

As far as I recall you are being treated for low estradiol - because you suffered PND as well as low mood just at the end of your menstrual cycle? I can't remember if you are actually peri-menopausal or not?

The point I made is that HRT for menopause is designed to be given at a dose that averages out the estradiol levels throughout the cycle. If levels are consistently at the pre-ovulatory peak I imagine you might feel odd, but I doubt that amount of gel would produce levels this high even when at their lowest.

It seems from what you & gynae say, that you are probably progesterone intolerant as well as having low estradiol - you would know this if you consistently experienced negative side effects for almost the whole of the two weeks in the second half of the cycle.

If you are peri-menopausal then your estrogen levels will fluctuate so that they are sometimes quite high and sometimes very low - the oestrogel will help with the troughs. Similarly progesterone levels fluctuate dramatically (during peri-menopause) and where you don't ovulate sometimes you produce none and bleeding will then be heavier in the cycles when ovulation occurs.

I think I'm repeating myself here!  The thing is if you are peri-menopausal it is a tough time because hormone replacement can only partially even out the fluctuations and it is much more difficult to get the balance right.

If you aren't peri-menopausal - then the only thing you can do is either follow Prof Studd's advice and hope you feel generally better overall than before, or perhaps find another gynaecologist (like Panay) who also treats hormonal depression accordingly (ie with hormones). I remember another member saying there was a long wait to see him but if you are not due back to Studd for 5 months you could put your name down. I've no idea what he costs compared to Studd!

Sorry I can't be of more help and this ia a bit of a ramble again...

Hurdity x

[Chi chi]

Thank you hurdity for replying and I don't think you ramble at all, your really helpful 
I think I understand what your saying, as I've been on one kind or another of birth control since I was 16, how do I know what my normal/natural cycle, periods and moods are like? I was on the mini pill for a few years 6 weeks prior to first seeing studd and didn't have periods. I can't be sure how heavy or how long they last? Or If they're even regular? 

[Suzyq]

1001 for estrogen?! That doesn't sound low to me! I don't know any specialist who would want levels that high.... It amazes me to be honest that prof studd appears to think most women are progesterone intolerant! How did we survive before menopause???

We have had this discussion many times! Progesterone does more than just protect the womb! It is not known as the calming hormone for no good reason! I am not suggesting that you don't follow your specialist, but it appears you have, and that hasn't been working! If I were you I would think seriously about requesting a referral to a menopause clinic and perhaps seeking a second opinion.

I do hope you find some answers and that you start to feel better very soon

Xxx

Ps hurdity is correct bio-identical compounded progesterone is very popular in canada (and also free!) it is favoured as a more effective method of absorption, just as patches and gels are favoured by most women for estrogen! I appreciate it may be more difficult to obtain in the uk, but it is certainly not 'ineffective' ...

[Hurdity]

Just caught this but in a hurry as working tonight - can't answer properly but just to say it's important to know the units of measurement of estradiol for comparison. In US it is usually pg/ml (I understand?) but in UK it's pmol/l
1 pg/mL = 3.671 pmol/L
so divide UK figure by 3.671 and you will get US figure (of pg/ml) ( if I'm right about the units of measurement).

1000 pmol/l would be a good amount for pre-ovulatory peak  ie within range but of course is lower elsewhere in cycle. One measurement doesn't tell you a lot esp if peri as depends when it's taken.
Studd will be referring to the creams available from the internet that women buy during peri and cannot be used to protect womb as insufficient prog - suzy yours is different - and lucky it's free. It would be good to have the alternative formulation here as it's a different mode of delivery although it would still be more likely to have side effects than vaginal use because it has to be absorbed through skin into bloodstream and carried round to uterus. There is progesterone vaginal gel (Crinone) but it is rarely prescribed for HRT. Vaginal prog is best for women who are prog intolerant as goes straight there but enough is absorbed for progs other functions in body.
Prog intolerant women suffer throughout their fertile lives during the second half of the menstrual cycle instead of just pmt for a few days just before bleed.
Sorry this is rushed!
Must dash!
Hope this helps

Hurdity x

[Milamam]

Just to add to this discussion although I understand very little of all this. Three days ago I went to have mt bloods checked as i was due to the gyno for a six month follow up. At 9 am estradiol showed at 1970 pmol/l. Of course I was shocked as I know I am low on estrogen and currently on HRT (Femoston 2/10). The test was done on day 3 of cycle (spotting no real cycle at all). I then remebered that i have just taken my HRT pill just an hour before the test. This might have caused the sudden surge. I went the next morning and repeated the test without taking my pill. Guess what, estradiol was no 500 pmol/l and within limits. I did both tests privately.

The doctor today looked at the results and said that for the purposes of the therapy these tests are more or less irrelevant as largely influenced by the HRT, its type and when it is taken. He is more interested to lok at FSH levels for example. He said he wouldnt be testing progesterone levels as well as also irrelevant at this point. What he was most interested was how I was doing generally on the program and what is the situation with the original symptoms.

Regardless of the high estrogen and normal progesterone, I didnt get a proper bleed this month. My womb lining was also normal and within limits as measured today.

[Chi chi]

I don't understand why prog isn't tested? Aren't our hormones supposed to be balanced for us to feel good and well? Physically and mentally? Is estrogen dominance and such a myth then? 

[Suzyq]

That's how my specialist explained it to me - the ratio between estrogen and progesterone!

It is confusing with so many opinions and in the end you have to be patient and find what works for you. My experience is different from hurdity, whose experience is different from xxx try to listen to your body and go slow. I can now recognize when I have too much estrogen by my symptoms. Do you feel better now an when you started hrt? If so, hen it's about tweaking until you get it right.

If not, then consider whether the method or doseages are at fault.  I do hope you feel better soon xx