Help understanding blood test results

[walfoh]

Hi,

My daughter has been suffering from hair loss, excessive weight gain and a range of other PCOS symptoms and recently had a scan which was clear but her blood tests showed 2 abnormal results : sex hormone binding globulin level 19.9 (ref range 32.4-128.0) and free androgen index 9 (ref range 0.0-4.0). There was no explanation of what these tests meant from the Doctor all she said was “loose weight and stay positive”! She did not think that my daughter has PCOS. My daughter came away from the session in floods of tears and very disheartened. To say we have no confidence in the doctor is an understatement.

Any help in understanding what these blood test results mean would be much appreciated. For instance is 9 for Free Androgens very bad?

[Hols969]

I personally think it sounds like PCOS the SHBG is low which can indicate insulin resistance which needs to be controlled and should not be left (not all pcos ladies are insulin resistant).

Is it just a GP you are seeing or an endocrinologist. If you can afford it I would pay privately to see an endocrinologist (you can then be referred back to the NHS). Where is it you live ? We have lots of local groups in the UK so someone may be able to recommend someone, If you can get to London you could see the chap who advises Verity, who is excellent and really nice too.

[Yorkwalford in reply to Hols969]

Hi, Many thanks for responding. We live just outside York. My husband has endocrine related problems and knows the NHS team in York and Isn't that enthusiastic about her going there. It was a frustrating experience getting the right treatment for him. With previous medical issues we've often found that the consultants we pay to see privately are usually the ones we see on NHS!! Maybe it's different in other parts of the country. That's certainly what happened when I needed my auto immune problems diagnosed.

I've already booked her in to see another doctor with the plan of getting her referred privately as we've been fobbed off for years about her hair loss. If anyone knows of a good private consultant in York or Leeds I'd love to know.

Must admit my blood is boiling at what the female doctor said to my daughter. She rushed to tell my daughter she was about to retire. The sooner the better I say!

How would we go about seeing the Doctor in London? Would we just need a referral letter from our own doctor?

[Yorkwalford in reply to Yorkwalford]

I should point out that my husband (walfoh) and I joined the site independently. My husband created this thread and I am responding in his absence. Sorry for any confusion. We are quite frazzled at the moment. Seeing our daughter so upset is making us feel quite helpless. If we need to delete one account please let me know.

[Hols969 in reply to Yorkwalford]

Yes it is often the way the private one you see is the NHS ones too but sadly not all Endo's are experts in PCOS - Prof Stephen Franks is the chap that advises Verity and does loads of research into the condition so really knows his stuff - I think you can be referred to any Endo you like now for the NHS (he does NHS too but obviously quite a long waiting list). There are long term health consequences of pcos, sadly it is often just dismissed still (I was diagnosed about 25 or so years ago and it has slightly improved but still not great!) You are often just left to it as well.

Low GI and cut out all white carbs is the way for your daughter.

If you use Facebook we do have a Leeds local group (search Verity and it should bring up all the groups) so there may be someone who can advise. If not I would recommend Stephen, bit of a faff to get to London etc but at least you will get the answers you need.

I went on the combined contraceptive when I was 15 (and still on it now age 48) and it has controlled my symptoms pretty well (I put on 3 stone when I came of the pill to try to conceive). I would get her on that as it masks all the symptoms and makes losing weight easier.

If she ate the RDA she will still put on 2lb a month so over a stone a year so does need to eat considerably less just to stay the same weight. It is frustrating and think for the youngsters, where everything 'look's so perfect on everyone else, it is a real struggle.

There is also a link between depression and pcos too so that isnt uncommon, they dont know if it is the hormone imbalance or the symptoms that cause the depression.

PCOS can come down both the male and female line, it is not ovary related so the name is misleading. They are pretty sure my hubbie has it and my son is a carrier too!

Good luck, let me know how you go (I did guess both users were related when you responded!!!)

[Yorkwalford]

Thank you much for this information. It will certainly help focus the discussion when we go to see the GP in a few weeks time.

[walfoh]

I just wanted to post an update to say after a very unhelpful appointment with a female doctor resulting in my daughter in floods of tears we finally got to see an excellent endocrinologist in Harrogate and she has finally been diagnosed with PCOS. What a horribly upsetting experience it’s been to get to this point. The consultant will be writing to our usual doctor ( not the ghastly female one) with recommendations on medication etc. Thank you for your support on this thread. It helped a lot.