Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: abbyH on January 09, 2017, 12:25:08 PM
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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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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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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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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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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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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
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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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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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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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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 :-[
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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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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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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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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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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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aaahhh ........ we don't rest though do we ::)
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just to reiterate. I'm keeping track of what I eat (via online tracker)
I don't eat sugar...
I exercise daily
my basic needs are probably 1800, but I eat less it's true - I actually can't eat that much!
I have an underactive thyroid and am taking medication.. yes T4 low (not sure of T3 as they don't test) TSH low because on thyroid meds..
am gaining weight rapidly not losing despite reducing calories and upping exercise!
I eat a very healthy diet, vegetables, plant protein, tofu, quinoa, leafy greens, almond milk no dairy.. and since Jan 1 no eggs or cheese (veganuary!) not too many potatoes (sweet potato mainly and celerica) and pasta once in a while mainly spelt or brown
Symptoms (on oestrogen therapy)
sore big boobs
waking and insomnia
have had mood issues up and down...
weight gain (8.13-10stone)
some hot flushes
hair loss
I don't think my diet and my weight gain are related.. I rush around and do stuff all day, so even without exercise on top my calorie intake is matching my BMR and output.. and I shoudl not be gaining weight..
on HRT I feel awful, any dose, and whether patch or gel, I feel bloated, I look 4 months pregnant and feel as if I have fat plastered to my body, like a suit. I'm normally a 5.4 woman slim with a good body fat ratio.. I now look like, well like I'm pregnant!
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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 would struggle to eat 2000 calories a day and I would also struggle with NHS dietery advice as they still push the old low fat high carb advice. . I do listen to dieticians more than 'nutritionists' but with every bit of my being I can tell you that I do eat well - good as in non-processed and whole foods, a range of carbs, proteins (plant based) and healthy fats (olive oil, some nuts and seeds, avocado) and a range of fruit and veg. I have been interested in nutrition for a long time and read a lot and enjoy cooking. if I was eating, for example, a lot of white bread, cakes, biscuits and soft drinks then yes, I can see your point in adjusting my diet. But how can I make it any healthier? here is my sample menu (from today)
Breakfast. Coffee with almond milk. Porridge oats with: blueberries, flax seeds, pumpkin seeks
lunch, vegan cheese sourdough sandwich, soya milk flat white
dinner: veggie burger, salad (including green leaves beetroot and tomato)
water... about 4 glasses..
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No, it definitely doesn't sound like your diet is the problem, sounds like you're doing really well with that. Sorry, I know nothing about hrt but can you get an earlier appointment with hospital or Gp? Sounds like you're doing everything right which must be so frustrating. Hope you find the answer
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I LOVE beetroot ::)
How fatty is almond milk and soya milk, all nuts can put weight on .... despite being good for us. I try to eat a handful of Brazil nuts daily but often forget, they are good for selenium apparently.
I have no idea how many calories I take in because my diet isn't the same each day. I also know that I don't exercise as I used to do, nor how I ought to despite having a tread mill ::). Must Try Harder ? [that's all I remember on my school reports ::) ]
Maybe the thyroid is the problem?
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Almond milk is v low fat.. not fattening at all.. same as soya milk... these are v low fat/low calorie options... as are all non-dairy milks actually.. for the amount I'm taking in Roughly maybe 100mls a day.. really nothing...
nuts in moderation..
Brazil nuts high in selenium a myth I'm afraid, its all down to the soil they were grown in having high enough levels ( a dietician told me that!)
yes.. maybe.. I am trying to tweak my medication upward.. will see if that helps...
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Which is why we are often low in selenium due to the Earth not having enough.
Let us know how you get on?
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I will do.. But as an aside. The doc's don't recognise I have a thyroid issue (as borderline) despite having Thryoid antibodies. So am self medicating.. I think possibly needing to up my medication first and then try oestrogen might be the way forward... I think my diet is really as good as it could be, I have the odd treat as everyone does, but I'm not diving into the biscuit tin daily or eating vast amounts of empty calories/carbs etc
I just feel like no one is able to help me, apart from myself! and I am not always sure what I am doing
thanks anyway xx
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Hi Abby,
I really, really sympathise.
A quick question about your menu - without knowing what's in the veggie lunch and burger - it strikes me that you could do with more protein with every meal?
x
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beans/nuts
i have been a meat eater (moderate white meat and fish) am on Veganuary! so doing a vegan diet for a while...
but eating a lot of pulses and green leaf veg
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Problem is that beans/pulses are also higher in calories. So you'll need stronger portion control.
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Nuts are really calorific, too - I saw a photo spread of different nuts grouped with calories the other day - was shocked at how few nuts = high calories.
It adds up.
I know because I've been there!
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really ? a normal size bean/nut burger is about 200 cals
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;D what's normal for one might be tiny or large for another person ::)
Have you not been referred to an endocrinologist ? someone who can over-see all the problems? Maybe ask your GP? No one should have to feel ill as you describe, though not all GPs realise that 'borderline' thyroid function tests should be investigated!
I want you to feel well, I remember how ill I felt during my bleeds and with PMT :sigh:
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Hiya,
Yes, of course, if you're eating a bean burger where you know the calories, but I meant if you're eating nuts as snacks.
What exercise do you do daily?
I suspect like everyone else that it's about needing medication/hormone levels and nothing you're doing. I'm in a similar boat. I've just started HRT but despite huge efforts my normally slim body has changed shape considerably this past year. I feel so chunky. I do HITT workouts, eat really well. Very on it nutrition wise. I've come to accept its hormonal, and hope the HRT will help.
It's a huge challenge. I'm sorry you're going through this.
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Diet-aside, what symptoms did you have that made you want to try HRT?
Perhaps you don't need it if your hormones are balanced but just in smaller amounts now (from adrenal glands etc).
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hi Dangermouse
I have had a total hysterectomy and ovary removal so am advised to take HRT for the reason I am not producing my own oestrogen or testosterone anymore
My symptoms were and are: massive hair loss, weight gain, insomnia, some hot flushes.. both in Peri and also now in surgical meno
Thanks
abby
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Hair loss can be stress related or there may be no known cause. Does thyroid mis-function affect the hair follicles?
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Yes, lots of co-morbidity with low thyroid (or even over active thryoid)
I'm currently taking 1.5 grains of Naturethroid, going to increase to 2 shortly and then 3 to see if that might be the missing link, not being medicated enough..
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Do you keep a note of what you take and how you are feeling; sorry, I can't remember
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But how can I make it any healthier? here is my sample menu (from today)
Breakfast. Coffee with almond milk. Porridge oats with: blueberries, flax seeds, pumpkin seeks
lunch, vegan cheese sourdough sandwich, soya milk flat white
dinner: veggie burger, salad (including green leaves beetroot and tomato)
water... about 4 glasses..
Sorry to hear about your weight issues and problems with hRT.
Sounds like you defo need to work out a way to take in oestrogen but you need an endocrine overhaul too from endocrinologist re thryoid and you other hormones and especially given your Total hyster + BSO. I would try this and then get onto a 25 mcg patch as soon as you can and build up from there.....
I have only skimmed the posts as this thread is long but my first observation on your diet is too many carbs! You are eating extra carbs at every meal! I eat them at one at the most and often none! My son directed me to this when i was having the same problem - continuing to gain weight despite exercise and what I thought was a good diet - with TSH easily within normal range ( though not having measured the others).
I would replace carbs (as in the oats, sourdough and the burger bun) with veg, fruit, protein if you can. You should not need to measure calories - I have never done so but have always lost weight whenever I have needed to - on various diets over the years - and have always eaten when I'm hungry!
I would maintain a low fat low carb diet for some time and see how you get on - by low fat I mean low fat from protein ie in your case limit cheese severely, and keep fried foods to minimum except a little olive oil. Initially cut down on coconut milk/cream but take in most of your fat from nuts and things like avocados. If you are non dairy then that makes things a bit tricky re breakfast - I have oat type/muesli breks about once or twice a week and then no added carbs at other meals - but do eat normal unprocessed foods that contain carbs eg beans, pulses, root veggies except spuds. I usually eat eggs, yogurt and fruit for brek so not sure what you would have that is satisfying but low carb ( I'm sure there are ideas online....). I eat tons of veg based soup - always at lunchtime - big filling bowl of it - take in flask if you go out to work! Lots of unsweetened stewed apple ( but not excessive fruit).
Hope this helps a bit....
Hurdity x
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Thanks Hurdity.. (the veg burger was without a bun just FYI..)
eating a largely veg/vegan diet .. so protein coming from beans and pulses
but will look at the overall carb ratio... xx
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Just to be clear. Not eating cheese at all!
veggies, fruit, almond milk on porridge in am, fruits, beans, lentils, rice (brown)
tofu - some
green veg all the time.. kale, pak choi etc
no potatoes, celeriac, parsnips or sweet potatoes
tons of real whole food nothing processed, barely any sugar
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Hi again AbbyH
Sorry - yes I know you eat a really healthy diet and I was just really trying to look for something you could do differently and because although I am not in the same position ( I have not put on weight through HRT except boob size, and still have my female bits) I do struggle with weight and have to be on a permanent fairly low carb diet just to stay the same weight. If I take my eye off the ball ( eg Christmas!) it all goes to pot.
I can see with a vegan diet it is more difficult to get the right protein without also eating quite a lot of carbs although your fat intake is likely to be pretty low. In fact I'm not sure how you would do it without grains if you don't eat eggs or any dairy?
Mostly people on vegan diets are very slim so it really does sound like something hormonal as it's not as though your diet needs changing drastically. I don't know if this has been said but with your exercise I presume some is muscle strengthening rather than just cardio - as muscle used more calories at rest so you would put on less weight with the same amount of food.
We have discussed thyroid function before - is it possible to pursue this further in your case?
Somewhere on the thread there was a comment about metabolism. Basal metabolic rate is a function of age, gender, diet, fat content of body, lean muscle mass, genetics, endocrine factors etc. Fast metabolism simply means you have a higher BMR! They are the every day word for the same thing.
Hurdity x
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No fish
No eggs
abbyH - What is your body *feeding* on ??? ......... we aren't designed not to eat meat, look at your jaw/teeth formation! The body needs calories to burn off calories ::) .......
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Tofu
pulses
green veg
legumes
rice
fruit
a whole heap of things
I don't really want to get into the whole veggie/vegan vs meat eating
I'm basically a vegetarian whose trying to limit animal produce in her diet
I know I miss eating fish - and like it so will probably re-introduce
I don't want to eat farmed meat or dairy - and for reasons that are probably not suitable to discuss on this forum
The issues are about my hormonal imbalances which I suspect I can't really correct while I'm without ovaries and not able to function on oestrogen only therapy - which was my original question
I do have a thyroid issue - adn am treating that.. after I've stabilised my thyroid meds I wil try the 25mg patch again
it just feels like an uphill struggle
Abby
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Abby
I think your whole issue is bloody hormones and thyroid NOT diet
You seem to know what you're doing re diet (damn sight better than what I know) and everyone could pick at all sorts trying to work out the why's of your symptoms but all said and done you have no ovaries and a dodgy thyroid !
I REALLY hope you get the help you deserve xxxx
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I'm not picking at your wanting to be a non-meat eater but maybe your body is 'missing' something? A few years ago, well, probably 15 by now, a friend who had been vegetarian since aged 11: suddenly at peri craved meat. She began with chicken, added more fish to her diet, ate red meat twice a week and within months, felt different and certainly better. She was at one and same time horrified :D ......... that her body had on the one hand, 'told' her that she was missing something and on the other, she had to eat meat in order to feel well. She went through The Change without too many problems and once she felt OK stopped eating meat and has been OK since.
Food for thought (sorry ::) )
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last year I was eating loads of meat
After having low iron levels in peri
I decided this year (2017) I wanted less animal produce in my body - that's not to say I won't eat fish again or even a really good (organic) steak once in a while.. but I thought I'd try at least to go veggie/vegan for a while
I feel fine
but really is is, as Annie says, my hormones and thyroid
both of which I'm trying to balance!
after not having any oestrogen for a week or so my hair has got noticeably worse - which means there is definitely a correlation
I'm going to go back to doc next week and ask for Tibolone and see if that makes any difference, I've read good things I just don't think I'm cut out for the oestrogen only route
Thanks for all your input tho!
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Oestrogen only doesn't do me any favours either, it did for years when I still had a cycle of sorts but no once that packed in I needed something else adding in the mix
Hair loss- in my experience, its bad whatever I take, so could well be genetic for me, who knows ? No one medically cares and I'm not a dr so sod it, I'll try and get myself well with or without loads of hair
Tell your GP to research Tibolone or better still print off reputable websites where it says it's for post menopause AND ladies without a uterus xxx
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I will do
Thanks Annie... I know it's all very hard.. My hair has got worse since NOT being on any kind of HRT (tried it for a few weeks) so it's clearly linked, I can feel it shrinking and falling out even as I write!
I think docs don't have a clue and just want to get rid of us but come April when I woudl have been evaluated again it would have been nearly a year since my surgery and I've just been left to get on with it basically... and lost so much more hair!
I'll let everyone know how I get on...maybe a 3 month trial of tibolone ?
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Hi abbyH
Did you say you did not have your ovaries? If so ( ie no ovaries) then it is more likely to be testosterone you need rather than progesterone - I mean have you been offered this in addition to oestrogen? When I went to have mine prescribed (T gel) the gynae said that many women find that increasing oestrogen does not work but when given a small amount of testosterone this did often help with symptoms.
I agree it really does sound like hormones rather than diet - as I said also in my first response on the thread. I only mentioned diet because there had been a lot of posts on it and I am sure that even for those with mild thyroid problem (sub-clinical) the slightest change in diet makes a difference - and if you are in surgical menopause then even more so. eg for the last week I started having (oat based) cereal for breakfast as I've been feeling under the weather/migraine etc - and I have put on another couple of pounds - the rest of the day I eat virtually no carbs - so I think some women do respond very quickly to these changes - and I take a fair bit of exercise. Doc said this week there was nothing wrong with my thyroid - looking at blood results from TWO years ago!
First and foremost though your hormones do need a proper investigation and not be dismissed!
Hurdity x
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Do take a list to your appt.. Thyroid dis-function can cause problems of it's own >:( ::)
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Thanks.. yes I have been trying to get hormonally balanced since my op in June
Hurdity, there's no reason why oatmeal can't be part of a low carb diet plan it's rich in fiber and one cup is only 28g of carbs!
If you are on a seriously low carb diet (i.e 20gs or less a day then yes) it's what goes on top that is probably problematic.. I have the whole grain variety with berries, flaxseeds, sometimes goji berries and it really gives me a feeling of fullness and energy. When I go back to eating eggs again (after my vegan january) then a few days of egg-based (i.e protein) based breakfasts will be great
CArb cycling is a good way to go I think, doing one day of low or no carbs and one day of a (good carbs, not white bread and rice types)
anyway.. I'm going to see my doc next week, she knows I've been in the same place since June last year (i.e struggling post-total hys and BSO) and I'm going to ask for tibolone to at least get some hormones into my system. I just don't think teh oestrogen only route is working and I feel miserable on it
I'll report back!
Abby
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Good Luck!
Himself started me on Lizy's organic muesli a few years ago and I don't get that hunger dip mid morning now! It's a bit chewy though ;D but has lots of sunflower seeds etc. in ......... I think that there are 3 types now. Years ago we bought the basic ingredients from the Health Food Shop and made our own, we also bought pea-nut butter from a barrel: we would take our own 1lb jars and re-fill.
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HI Hurdity. I don't have my ovaries :-*
So, the idea was that I'd take oestrogen only patch/gel and try and get levels up before adding in T but I am finding the Oestrogen only bit really hard and I don't think I can carry on for another 4 months on that alone before the T can be added.
So, I think perhaps Tibolone might be an option for me - although slightly anxious about a few things
Do you know if, once hormones were more balanced I would be able to swtich from Tibolone to a topical HRT such as Patch +Testosterone gel?
Abby
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Abby I'm not completely sure if hormone levels test the same on Tibolone, I may be wrong but as Tibolone mimics the conversion to E,P and T I'm sure I've read it won't give true readings.
one for the more educated I think and that's not me ! X