anyone with PCOS and ME / chronic fatigue?

(6 Posts)
notsurewhatshappening Wed 23-Jan-19 13:04:15

I've just been referred to an endocrinologist by my GP. For the last 18 months I've experienced crippling fatigue, itching all over and tingling and aching muscles. At first it was periodic but now constant. I'm not exercising any more as the last time I exercised I experienced a horrible sore exhausted feeling 2 days after.
Wondering if there is a link between this ( GP suspects ME) and PCOS. I've had extensive blood tests: thyroid, vitamin deficiencies, lupus, iron, ferritin, calcium, b 12 etc and all are clear.

What will the endocrinologist do at the hospital appointment?

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notsurewhatshappening Wed 23-Jan-19 13:05:19

Sorry- just to clarify I already have a diagnosis for PCOS but I'm not taking any medication for it (except contraceptive implant).

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MiniMum97 Wed 23-Jan-19 13:06:52

Ummm this sounds familiar. What were your actual blood test results?

notsurewhatshappening Wed 23-Jan-19 14:02:33

I don't know but I saw them on the screen and all were well within normal range, no borderline results at all.

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MiniMum97 Wed 23-Jan-19 14:31:33

It would be good if you could post the results with ranges. You can ask your GP for a copy. At lot of practices proved results online.

To rule out a thyroid problem you need your TSH, T4, T3 and antibodies checked. A lot of GPS only check TSH. Some people can feel very unwell however because they have raised antibodies (so Hashimotos) but their thyroid isn't damaged enough yet for their thyroid results to go out of range. Or you can have an in range TSH but below range T4 or T3 and your pituitary hasn't responded yet (it took mine 8 months from first test and I felt very unwell for months before that). You could have central hypothyroidism where you would have low thyroid hormones and low TSH. Sometimes these are all just low in range.

You have a higher likelihood of thyroid problems because you have PCOS.

Vitamins. Ideally you want these mid range to be optimal and vitamin D around 100. Ferritin levels below 50 have been shown to cause symptoms similar to Anaemia.

Don't ever accept "normal" from a GP. It's just an opinion not necessarily a fact. I've had lots of different opinions on what's normal from different doctors. So I do my own research and choose doctors who seem to actually know what they are talking about!

And definitely don't accept a diagnosis of fibromyalgia or CFS without the above being thoroughly ruled out. They tried to diagnose me with fibromyalgia. Turns our I have hypothyroidism (and also Graves/hyper, lucky me!). 😢

notsurewhatshappening Wed 23-Jan-19 14:50:19

Thanks I was going to ask for a print out but the endocrinologist referral threw me, plus I had my son with me unexpectedly

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