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Pcos

20 replies

Applejack87 · 19/02/2019 21:20

Hi , has anybody had pcos with elevated testosterone ? I’m currently waiting for scan it came about when I went to see my Dr about hair loss

OP posts:
botemp · 20/02/2019 06:31

Yes, I do. When first observed it was twice as high as what it should be. Had to get an MRI of the adrenal glands to rule out it wasn't caused by a tumour and had to see another specialist to rule out Cushing disease/syndrome.

As far as I know it's not unusual at all with PCOS but they do take it more seriously than other PCOS 'vague' symptoms but that may have had to do that I presented fairly atypical for someone with testosterone dominance. On balance, talking it through with my specialist, we decided that the side effects of the medication to lower it was more bothersome than the current side effects of the elevated testosterone and it was observed to lower after a certain amount of time. Still not in the 'normal' range but not too far outside it to be alarming. Only had hirutism issues at the time so minor lifestyle and diet adjustments along with some laser treatments resolved most issues.

Recently have been having issues with hair thinning as well, though it's been gradual rather than sudden. Minoxidil 5% applied topically has been working well for me so far. I have been offered spironolactone alongside it if minoxidil on its own wasn't up to the job but so far there doesn't seem to be a need for it.

As an aside, I'm not in the UK so assessment and proposed treatments may be very different on the NHS.

Applejack87 · 20/02/2019 14:18

Hi Botemp , Thankyou for your informative reply, my Dr hasn’t discussed treatment at the moment but I picked up the referral notes today for an abdominal and internal scan to check everything basically

I am worried but haven’t asked what the testosterone level is but it has elevated.
I’ve read that ladies with elevated testosterone can develop heart disease this also concerns me

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botemp · 20/02/2019 19:00

Have you only just been diagnosed with PCOS, as the scans you mentioned are the typical tests to diagnose/confirm that?

PCOS itself is very closely tied to insulin resistance which is often a precursor to diabetes. Even without high testosterone levels, you're already at elevated risk for heart disease, unfortunately. That's why a healthy balanced diet and the right types of exercise are really important. I can't do anything high impact, it triggers too much cortisol and that subsequently makes the testosterone levels kick up a notch. It's a job in itself to keep track of all the variables.

So, yes, whilst you're right to be concerned, you should be assured that you do have some level of control in preventing a lot of future potential damage. It's not easy, it takes a lot of dedication, and, realistically, money. You have to eat healthier than anyone you know and do more exercise to see results and if you need to shift weight (best thing you can do for managing PCOS) it's so much more difficult due to the insulin and hormonal imbalance.

sandyk88 · 20/02/2019 20:34

Botemp-

That's a really interesting point re high impact exercise and corsitol.

I have been on a low carb diet for around 18 months. Lost just under 5 stone and got my BMI down to 30.5 During this time I have exercised towards the end but wondered whether this slowed down the weight loss due to the hormonal changes from running/spin/body attack classes! I did ask GP but they said it was nonsense and to keep exercising but not really sure if they had the knowledge.

Applejack87 · 20/02/2019 20:37

Before having my daughter I had difficulty conceiving so had the various fertility tests and was told I had pcos . I really didn’t think much of of at the time I knew it was common & went on to conceive naturally .So the years have gone by & I’m menopausal with hair loss although it’s not obvious but concerned me . I do eat well & have just started exercise classes .
I really don’t know much about pcos apart from a few things that I’ve read would you know if there’s foods like carbs to be avoided ?

OP posts:
botemp · 21/02/2019 07:41

sandy, it's not that unusual for weight loss to become more difficult once you're nearer a lower weight but the types of exercise mentioned may not have helped in that sense with you. I've definitely noticed it and it was observed in tests in me that it was a contributing factor to my hormonal imbalance and I've heard HITT is counter to menopausal women as well. What is often overlooked is that most of these tests that seek out optimization of excercise are performed on either highly athletic or very obese men depending on the aim of the study. Optimal exercise and weight management is very much tied up with our hormones and men and women are very different in that regard. In men it's extremely hard to raise testosterone, and it's useful as it aids with muscle building, hence the steroid use, but it's terrible for a woman's cycle, never mind one with PCOS.

Another aspect in your experience may also be that you weren't eating enough to compensate for all the exercise you were doing, causing further stress to the body, shutting down into preserving what it has and making you reach a plateau. Did you calculate your BMR and TDEE according to new weight and exercise regime?

I tend to favour weight training or pilates these days. Works best for me, I occasionally do skip rope following the Tabata methodology which is a bit like HITT, that seems to be manageable (I can usually feel cortisol surges as they happen) being higher impact, and it's a pretty efficient way of exercising. I like it as it rids me of restless energy, which isn't good for
the body either. I don't push myself to the absolute limit though which was always stuck in my head as 'the proper way' to exercise. In my case it really isn't, HITT makes me gain, and it's not muscle, and drains my energy for days. The rest of it is incorporating low impact into your life, I cycle everywhere, take stairs where you can, long walks in the woods, etc.

It's worth reading up on cycle synching for the exercise component, the food aspects are less interesting to me as I'm more of the opinion that as someone with pcos those foods are all good any time of the month and I feel it's better just to have them when you feel like it (or they're in season even).

Apple, personally I'm very anti restriction of a specific food group, PCOS diets need to be sustainable long term not just for a short while. Broadly speaking moderate in complex carbohydrates (45-55% in terms of macros), high-ish in lean protein, go higher as you get older (25-35% macros), moderate in healthy fats (20-30% macros), definitely get the oily fish in twice a week. Fibre is important, get in 25g a day minimum. Cruciferous vegetables are really good for people with PCOS so they're usually a good starting point to build a meal around. The GI scale is a bit flawed but it is a good starting point for foods to eat rarely and often.

There are some concerns with regards to foods high in phytoestrogens like soy, flax seeds, sesame seeds, oats, etc. I personally do better without them in my diet but I do feel this is more likely anecdotal.

To tackle my testosterone levels a switch to exclusively organic dairy (always take it in full fat versions, reduced fat anything has more sugar, even the ones without added sugar, though there are some dairy products that are low fat naturally which is usually fine, like Skyr) made a good difference. I don't eat meat, but if I did I would have switched to organic exclusively there as they don't use hormones in rearing cattle, although this doesn't happen much in Europe, but there's plenty imported, so I mostly don't take any of it outside the house unless it explicitly states organic dairy is used, though a rare occasion won't trip me up, obviously.

The only thing I am exclusionary of is added sugar since it's all about insulin management and this just sets it off balance massively. Whole fruit is fine, juices and smoothies not so much. Obviously there are allowances for the odd bit of cake on a birthday worth celebrating or a fantastic pastry on holiday but it's really a rare thing and it better be fantastic when I do indulge. Reality is when you cut off sugar everything tends to taste far too sweet when you go back to it and hardly tastes like you remember, especially the mass produced stuff.

I've never been much of a drinker but stopped completely years ago. It makes blood sugar drop drastically and it's been theorised that the body can't metabolise fat for something like 24 hrs (more as you age).

I'm generally of the opinion that supplements are just expensive piss and if you Google PCOS and supplements you will get a list ridiculously long but with scientific backing there are a few worth taking.

Vitamin D, although the evidence surrounding it as the only medically backed supplement seems to be questioned at the moment, with PCOS there has definitely been shown to be a relationship that benefits from taking Vitamin D. My gynecologist recommends one 10,000iu of Vit S3 per five days but I find it hard to remember every five days so do 2,500 daily, makes my hair and nails grow really fast though.

There's also Myo inositol, 2g twice a day with a meal. Alpha lipoic acid (600mg) alongside it helps it perform even better. Gynecologists will often push a Myo and Ciro inositol combination product with women TTC. It's expensive and the research indicating the need for a combination approach with a specific ratio is based on one small case study, but it was specific to women with PCOS whereas the 2g Myo was performed on those with insulin resistance. Anyhow, inositol is considered a good supplement to use to help keep glucose levels steady.

Only other supplement I'd consider is an Omega 3 if you don't/can't get oily fish in often enough.

Apologies for the length Shock

Applejack87 · 21/02/2019 18:29

Thankyou so much for all the info botemp it’s greatly appreciated , I’m also peri menopausal which is another story that I’d need to discuss regarding hrt

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sandyk88 · 22/02/2019 14:43

Botemp

I really appreciate all that info- and it makes so much sense re HIIT training and how it impacts on hormones especially with PCOS. I got to a point where I was doing 7 days a week but have taken a step back and decided I need to probably use low carb as a way of life rather than a diet!

Applejack87 · 22/02/2019 14:56

It’s so difficult following a low carb diet , I’m currently waiting for a scan then I can discuss the best way forward with my Dr all going well

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botemp · 23/02/2019 07:06

Low carb diets are very difficult to sustain long term and AFAIK they're not recommended either due to elevated risk of intestinal cancer. I think if you are going to do it, then I'd look at counting net carbs instead as it's not as restrictive and you still get a good amount of fibre in. I've never done it as low carb diets make me actively ill, but you basically deduct the fibre content from the carbs (as we don't digest this the same) and you eat somewhere between 50g - 150g of carbs daily. General health guidelines say not to eat under 120g of carbs (total, not net) so I'd personally be sticking to the higher end of that range.

Exercise is great, but the reality is weight loss is mostly down to diet. For a perfectly healthy person exercise can help speed things up and help counteract the occasional misstep, and it's great for mental health and keeping you motivated and on track, but the reality with PCOS is that it's management of a syndrome. Everything happens low and slow and with as much consistency as possible. So just do something active daily that you actually enjoy and takes little effort to incorporate into your life as that will make it sustainable.

trinity0097 · 23/02/2019 19:21

A low carb diet is easy to sustain long term if you change the way you shop and cook slightly! However you need to up the fats to make you feel full.

For example I have embraced cooked radishes in place of potato! For example, you can chuck in a stew, you can pan fry, you can roast.

Applejack87 · 24/02/2019 10:46

I find it so hard reducing carbs in my diet , I’m currently doing slimming world I’m not quite sure if it’s a good idea as the weight is slow to come off maybe peri menopause has something to do with it
I had a call from the hospital yesterday there’s been a cancellation for my pelvic & abdominal scan I’m feeling nervous 🙁

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Applejack87 · 24/02/2019 10:47

Sorry I meant there’s been a cancellation so I’m booked in tomorrow

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botemp · 24/02/2019 20:38

Good luck tomorrow, Apple, don't worry too much, it's nothing too uncomfortable. Tell them if you're nervous as it will all go a lot easier if you're (somewhat) relaxed. I get the scans annually and it really is over before you know it Smile

Applejack87 · 24/02/2019 21:49

Thankyou so much for your kind words botemp, I’m really dreading it & hoping there’s nothing wrong that’s my fear as well

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Applejack87 · 25/02/2019 16:50

I had an abdominal & pelvic scan this morning nothing was found , I was told that I don’t have pcos 🤔,
Just wondering now why my testosterone is raised could it be menopause

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botemp · 25/02/2019 20:28

Glad to hear nothing was found. That is odd being told you don't have PCOS. There was one year that no follicles showed up on one of my ovaries which I was told was impossible with PCOS but there was no real explanation either. Perhaps it is all menopause related in your case. Hopefully your doctor will help you figure it all out.

Applejack87 · 25/02/2019 21:25

Hi botemp, yes it is very odd , my husband said I should be relieved that all is ok but me being me am still worried about the elevated Testosterone , three week wait to see my GP as she’s on annual leave

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Applejack87 · 05/03/2019 18:15

So I phoned my surgery and my test results are back vaginal scan of my ovaries & abdominal the receptionist said it’s complicated for her to tell me the results it’s incimclusive and I should speak to the Gp on the 15th March which is my appt
I am worried because if I don’t have pcos what is causing my raised Testosterone
Advice please

OP posts:
Bex4567 · 08/04/2024 11:35

Hi did u find out what was wrong after

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