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Author Topic: Really struggling....  (Read 14391 times)

abbyH

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Really struggling....
« on: January 09, 2017, 12:25:08 PM »

HI everyone. Happy New Year all!

I'm wondering if anyone has any advice for me.
Post surgery BSO and Total HSYT last June. Trying to get some sort of HRT stable but I can't.
I have tried gel and patch from low to high (ish) dose and even at the low dose I feel awful, my clothes dont fit, my belly's overhanging my trousers I exercise and eat a vegan (ish) diet]

Have been to DR Panay's team in the hope would get testostone, but have to be on Oestrogen to raise levels first, but there is no way I can do this.

I hate the effects of the oestrogen - the way my boobs increase in volume and are sore and my body just feels like fat is clinging to it
I have no improvement in sleep (still wake several times a night) and am still no libido

I am beginning to just think I can't take HRT - but I know I need to
I desperately wanted testosterone as I felt this might be the missing link, but there is no way that I can be prescribed it without having sufficient oestrogen levels (or is there?)

I asked doc for Tibolone and she said no (because of hair loss)

I'm at the end of my rope, I've tried the 25mg patch and even that has the same effect
What to do?

Hope you might have solutions. It will be nearly a year (in June) since the op and by the time I get back to the hospital in London (they'll see me April) and I'm no better off.. Still over a stone overweight and miserable...

I run, eat well, do yoga, don't eat sugar etc etc and I'm gaining not losing.. which as I'm sure you all know is awful
the one TINY improvement I see is my hair and feel it has stopped falling out and is looking better.. On another board there is a recommendation to rub a tiny bit of prometrium (uterogestan) in it at night a few times a week. I've been doing this and my hair has stopped falling out

Hooray!

so ladies please, advice. I know Tempest has been in the same boat.. Do I try perhaps the transbuccal mode of delivery (taking Zumenon or another tab of E?)

has anyone done that?

Abby
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CLKD

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Re: Really struggling....
« Reply #1 on: January 09, 2017, 02:00:14 PM »

Probably your diet to blame?  The body needs calories to burn off calories which includes sugars and dairy. 

Also, people seem fixated on testosterone ........ where your hormone levels tested when you saw Dr Panay?  Who tells you that your are overweight? 

As oestrogen levels drop off so the muscles may become lax = aches and pains: = loss of muscle tone: = dryness in the body.

I know when my weight alters because my jeans feel different!
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Annie0710

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Re: Really struggling....
« Reply #2 on: January 09, 2017, 02:29:11 PM »

Hi Abby

My heart goes out to you it really does

Have you tried oestrogen in pill form ? Elleste solo 2mg (max dose) served me 100% for 13 years up til my peri started, to be honest I've never felt right since. But it is always worth a try because you've tried gel and patch, if you do try, start at 1mg.  I always had very high levels on the pill form whenever it was tested (hysterectomy hence why I needed blood levels testing)

I googled what you said about progesterone cream on head, it seems (from a page I read) it can block the dht from testosterone so I'm finding that really interesting as I'm suffering too.

I'm not sure what the difference is really between taking Tibolone and using testosterone gel, I did initially think gel would be best but to be fair either are going to put T in the body and give effects and potentially cause hair loss. 

And Tibolone can cause weight gain but if more energy is produced and you're an excercise-y person it could balance out with no weight gain

Just trying to throw out some ideas for you.  I know how I've struggled and still am really but you were thrown into this from your surgery x
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abbyH

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Re: Really struggling....
« Reply #3 on: January 09, 2017, 05:25:31 PM »

Thanks both
for the record am: vegan, sugar and dairy free and exercise most days...
so, there's no real reason why I'm holding onto all this weight, apart form hormonal.. I do feel about 4 months pregnant ALL the time

"Probably your diet to blame?  The body needs calories to burn off calories which includes sugars and dairy. 

Also, people seem fixated on testosterone ........ where your hormone levels tested when you saw Dr Panay?  Who tells you that your are overweight?  "

my testosterone and oestrogen levels are way low, because I'm in surgical menopause
I know I'm 10lbs over MY comfortable weight, of course I am not 'overweight' for my height etc.. but its how I feel that counts.. and I feel yuck!
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abbyH

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Re: Really struggling....
« Reply #4 on: January 09, 2017, 05:28:28 PM »

Am currently taking in about 1400 calories per day and exercising on top.. There is no medical reason why I would b gaining or not losing.. I did lose a bit from Oct-Dec but seems to be reversing!

trying really hard.. but the whole thing has just made me so depressed.. I despair I just won't be able to take HRT

am going to try the pill next I guess... but over at surmeno... the discussions are around transbuccal delivery, which might also be the way to go...

If I could take something, not suffer horrendous swelling up and feeling lousy in myself, I'd take it....
I literally am crawling in my own skin most days on oestrogen only

Does anyone else have that experience?
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Annie0710

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Re: Really struggling....
« Reply #5 on: January 09, 2017, 05:34:46 PM »

Abby, I get you, I really do

Don't think I was trying to poo poo what you're struggling with, I was really trying to think of things to help

EVERYTHING you are going through points to testosterone and oestrogen deficiency. That's why I thought maybe pill form would get you a good level to start T? Or to try Tibolone and carry on with progesterone cream on scalp


I haven't had E levels tested since I started patches so no idea how I am in that dept nowadays

Xxxxx

« Last Edit: January 09, 2017, 05:38:44 PM by Annie0710 »
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abbyH

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Re: Really struggling....
« Reply #6 on: January 09, 2017, 06:31:28 PM »

But how can I try Tibolone if doc's wont prescribe and I'm months away from the next hospital appoitnment when they could prescribe me Test?

I will do anything at this point to just feel normal again
Thanks so much for your understanding.. so, am I right in thinking that doc's COULD prescribe me Tib?

Don't want my hair to fall out tho, will carry on with the rubbing of prog on said head!
xx
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abbyH

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Re: Really struggling....
« Reply #7 on: January 09, 2017, 06:32:21 PM »

Yes, can ask for pill form oestrogen next to try (adn take it transbuccally).. So Elleste solo? or Zumenon I blieve is my next

xx
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CLKD

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Re: Really struggling....
« Reply #8 on: January 09, 2017, 06:53:41 PM »

When did you have your thyroid function blood test?  What you describe may well be due to a thyroid that requires balancing?  I think that women are supposed to take in 1200 calories? (off to have a look-see  ::) ). 

I think that you would benefit from talking to a dietician, maybe your body isn't getting the correct nourishment at this time of Life? 

Are you hydrated?  If the kidneys are depleted all kinds of bodily issues happen  ::) and if one tried to diet, then the body stores fats in order to maintain the bodies activity [not being very clear, sorry ]

If you are under the care of a Consultant, the GP will wait for the next letter advising what is required.  Maybe ring the Secretary and pose the question?
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CLKD

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Re: Really struggling....
« Reply #9 on: January 09, 2017, 06:56:35 PM »

NHS Choices suggests:

"To maintain a stable weight, the energy we put into our bodies must be the same as the energy we use up through normal body functions and physical activity. An important part of a healthy diet is eating the right amount of calories; balancing the energy you put into your body with the energy you use.

"As a guide, men need around 2,500kcal (10,500kJ) a day to maintain a healthy body weight, and women need around 2,000kcal a day (8,400kJ).

"A healthy diet is not only about eating the right amount. It also means eating a wide range of foods to ensure you get all the nutrients you need. You can still eat less when following a balanced diet. Learn more about a balanced diet in the Eatwell Guide. "

I LOVE puddings  ::) but have found in recent years that if I wait for about 20 mins. between my main meat and veg./pasta/chips - my gut fills up so that I don't have room for my pud ........  :(!  I know that I eat too fast which will fill me with wind too  :-[
« Last Edit: January 09, 2017, 06:59:42 PM by CLKD »
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Annie0710

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Re: Really struggling....
« Reply #10 on: January 09, 2017, 06:58:08 PM »

After my hysterectomy and still with ovaries I was given elleste solo 1mg then 2mg

Now they can't see my ovaries they presume they've shrivelled and gone but I can't see why oestrogen in pill form can't be given, same with Tibolone, I was offered it

Abby, if it's any consolation when I started testosterone my hair seemed more manageable and less loss, but soon after it started shedding again so I personally wouldn't think there's much difference between Tibolone and testosterone .  Its ways of blocking the conversion of testosterone to dht that 'could' stop the loss. Your progesterone on the scalp or propecia (tablet wait for it licensed for men's hair loss) is another x
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CLKD

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Re: Really struggling....
« Reply #11 on: January 09, 2017, 07:01:09 PM »

Perhaps keep a detailed food diary of exactly what you drink, eat, exercise; times when you drink, eat ....... to give yourself an idea of what you do eat.  Make a note too of your mixes: i.e. veg. with fish/meat, stir fry with lots of coloured veg..
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nearly50

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Re: Really struggling....
« Reply #12 on: January 09, 2017, 07:02:27 PM »

When did you have your thyroid function blood test?  What you describe may well be due to a thyroid that requires balancing?  I think that women are supposed to take in 1200 calories? (off to have a look-see  ::) ). 

That wouldn't be nearly enough calories. I'm 5ft 2 and 7 stone12 and my basal metabolic rate is 1400 which is how much I have to consume if I don't move at all and want to maintain my weight. Most people are bigger than me so will need more
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CLKD

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Re: Really struggling....
« Reply #13 on: January 09, 2017, 07:09:35 PM »

Who suggested that metabolic rate has anything to do with our weight?  I used to say that I had a fast metabolism as I was thin and on the go all the while in a very busy job; but in 1999 a dietician told me that unless the thyroid function was out of kilter, the body burns off what it requires as and when.  It's what we put into our mouths and at that time I was border-line anorexic  :'(. [long story short].

As I began to relax I ate more but it was when I stopped exercising in 2000 that the weight went on  :o although I didn't eat much more, it took 14 months to get it down to 8st..  Also each of us uses up calories differently depending on Life style, worry etc.. 

I found that grazing helped keep my weight stable and also stopped the awful sudden nausea in peri..  Ain't it Trial and Error  >:(

abbyH  -  could you make a list of symptoms, decide what you need sorted first so that you can discuss with the Consultant's secretary, could the appt. be brought forwards? 
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nearly50

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Re: Really struggling....
« Reply #14 on: January 09, 2017, 07:13:09 PM »

Basal metabolic rate is how many calories we need while at rest. Nothing to do with having fast or slow metabolism.
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