Possible PCOS but GP won’t refer me to endocrinologist - hair loss main issue

[Colbrit]

Hi all,

Just found the site. I’m 38 and in Nov. I had a transvaginal scan and have fibroids and ‘suggestion of polycystic ovaries’. I have been on the pill since I was 31 - starting for bad skin (horrible acne type on chin during time of month) and before the pill I had normal periods, a 28 day cycle, PMT in lower back around time of month and stomach upsets around this time. I didn’t have very very heavy periods and do not believe I had fibroids at that time but can’t prove that.

I was put on Yasmin a combined pill skin cleared up and all the discomfort of menstruating went away.

I noticed hair loss when I was 27 but didn’t talk to my GP until I was 31 - they did the blood tests found I was low in iron zinc vitamin D and B12 - given some supplements but not taught how to take iron properly so just made my stools black. Then pushed it and sent to local hospital dermatologist was diagnosed with two hair loss conditions and then sent to a London for second opinion which they confirmed and told to take minoxidil @5% which they won’t sell over the counter to women, they’ll only sell you the 2% version. I had to go to the London hospital’s pharmacy and buy it from them which just wasn’t feasible. I was also advised to move onto the pill Dianette which my GP did.

Fast forward to age 37 my weight creeps up from 12 stone pre pill weight to 16 stones, I’m weighed at the GPs during my pill checks and I have normal blood pressure but no one links my weight to the pill or hormonal issues. My hair loss continues so I start a visit to a private local trichologist who can sell me the minoxidil at 5%. By now I’m on Cilest as my GPs have removed me from Dianette as I was on it longer than I should have been.

I start taking more supplements the iron properly again and the minoxidil however my hair loss continues in the year that follows and my weight is now 18stones. I finally mention to my GP that my weight is getting me down along with my hair loss. Through out this time I’ve had blood tests and they come as “normal” though the last one found some inflammation, cholesterol is slightly high. Due to my weight and age they remove me from Cilest and move me to a mini pill - Cirelle which broke me out in spots, flatulence, urgency to go to the toilet and hot flushes. My trichologist was also weary as it is a pill not good at lessening androgen levels which might be causing my hair loss.

I am sent to have the scan and a dietitian which takes a while to get an appointment -I have tried weight loss programmes but have failed them all. I also have done exercise but am not consistent I am in a desk bound job so I know that’s bad.

The scan was in Nov and I got given the results by my GP. Iam not in a relationship and not looking to have children which I have told him. I asked if I can see an endocrinologist however he said it’s not something that they could help me with? How can I pursue this?

I decided to come off the mini pill and to be pill free which my GP agrees with. So I can have blood test levels not masked by the pill. That happened in beginning of Dec and to this day I haven’t menstruated. I’m due to have a blood test this week and am worried my levels will still come out “normal” and there won’t be any follow up as he’s already told me they only do blood tests every 6 months if all shows as normal.

Does anyone have experience with endocrinologists re: hair loss and weight gain? My issue isn’t fertility at the moment and I’m feeling fobbed off by my GP because of that fact.

Thank you Sandra.

[Emtiggy]

Hi Sandra

Sounds like you have had a horrible time. I can tell you about my experience which may help?

I was diagnosed at 15 with PCOS and only treatment offered was pill, which I found didn’t really agree with me. In my 30’s I tried the mirena coil which for a short time was better. I am now 43, in last few years my weight had increased no matter what I did, had hair loss and hair growth anaemia and b12 deficiency, I was having palpitations and my memory was shot and I felt unwell most of the time. Gp was struggling and didn’t really know were to send me.

I decided to pay to go and see an endocrinologist as I had a feeling it was hormonal, it was the best money I’ve ever spent. That was 12 months ago, he has put me on medications. I’ve lost nearly 7 stone without difficulty my hair is better and all the other symptoms have gone and I feel like a different person, I wish I had seen him years ago.

Problem with this condition is no one really uderstands it and focus is on fertility but as you get older it’s about protecting your body from other conditions that it can lead to.

Hope this helps, best of luck

[Colbrit in reply to Emtiggy]

You have given me hope thanks very much. I love the NHS and support it but have felt let down. All my contact with the NHS has been with men who just don’t get the distress I’ve been through with this hair loss. I will see how my blood results go and talk to my GP again, if I have to go private I will.

[Stingy1 in reply to Emtiggy]

My daughter is 13 & diagnosed pcos. I'd be really interested to know what your endocrinologist prescribed for you.

I don't want her to start taking the pill & keen to explore other options.

She is overweight, not very active, acne, hair excess, regular but painful periods.

She has attempted to take her life as feeling so anxious & low.

So worried & hoping she can deal with all of this.

Thank you in anticipation

[Bella1988]

Just to put it out there I was told to lie and say I want to start trying to have children in order to get taken seriously. ..I was discouraged by one doctor and to thus day I still haven't gotten over it. I still hate him. You need to have a doctor that takes you seriously and you need to speak with a gynocologist only. GP's are not experts in pcos. U need to push for more thorough tests. Have you even had a scan of your ovaries ?

[Hols969]

What was your weight like on Yasmin, it is similar to dianette - the combined pill should help the symptoms and you should not put on any weight, there are lots of different varieties to try.

As for weight, look at theanswertopcos diet - I did it about 10 years ago and have kept it off (I am nearly 50 now), its the only one that worked and I lost weight each week, which helps with the motivation!! I think it does get more tricky as you get older too.

Have a look at the NICE guidelines on PCOS and what to expect from the NHS as you should be able to be referred to an endocrinologist but I think the NHS is so hard up that they tend to say no!