Anyone with PCOS? :(

[wolfem]

I haven't been on here in awhile--got my crohn's under control through diet. I've been in remission for about 6 months now However, now I'm having lots of other issues! :shifty-t: I don't have a clear diagnosis yet but I'm on HRT which seems to be helping a lot. I have older posts on here of me complaining of neuropathic pain and pins/needles. I mentioned possible hormone imbalance to my doctor and spoke with 2 gyn and 2 endocrinologists. They all think I could possibly have PCOS because of the hairloss, joint issues, neuropathic pain, crazy appetite, vision issues, high androgens, extreme mood swings, random lower pelvic pain (near my right ovary). All of this could be related to either disease condition. I noticed a majority of my symptoms get better when I'm on estradiol. Does anyone else have this predicament?

Oh and my thyroid has been tested numerous times. All normal

Thanks for all your feedback!

Mary

 

[Rebecca85]

Neuropathic pain and pins and needles? Firstly, have you had your bloods thoroughly checked for vitamin and mineral deficiencies? Secondly, shouldn't you need a referral to a neurologist, just to rule out any problem with your nerves (peripheral neuropathy).

In answer to your original question, I don't have PCOS but I do have pins and needles, and am being investigated for the cause (hence my interest!).

 

[kimmidwife]

Mary,
Usually people with PCOS have hair growth on their face and can have thinning hair on their head. What do you mean by hair loss? ALso some of those other symptoms you mentioned I have never heard of being associated with PCOS. THat said the high androgens and mood swings can certainly be associated with it. A good Ob/Gyn should be able to do all the diagnostic tests for PCOS. There are a bunch of them, including a test for insulin resistance which is one of the hallmarks of PCOS. Some Ob/Gyns specialize in treating PCOS. You may want to look for one that does.

 

[wolfem]

Thanks everyone for all your responses and advice : )

I do have hirsutism too and I have seen a neurologist. He told me I most likely have an electrolyte imbalance. My symptoms do seem a lot better on HRT--pins and needles virtually disappear. Low estrogen can also cause low sodium levels. I'm tested regularly for vitamin deficiencies. So far, I'm doing o.k. It seems too complicated to know for sure what is causing what and I've seen lots of doctors. Nobody can give me a clear answer. Anyhow, not everyone with PCOS has IR too. I'll be tested for that in four weeks. If I do have IR then I most definitely have PCOS-- or, who really knows I'm not a doctor. lol. Even the OBGYN I was seeing told me nobody really knows everything about the effects hormones have on the body.

Rebecca85- do you have low cholesterol too? The only abnormal bloodwork I have is high androgens and very low cholesterol. I had my terminal ilieum removed and I'm not sure if that has impacted my metabolism.

There are two doctors where I live that specialize in PCOS but they aren't covered by my insurance

 

[Rebecca85]

I don't think I have had my cholesterol measured. Having said that, my terminal ileum seems to be absorbing fine (had my b12 done last week and it was fine). You are right, having your TI removed affects absorption of certain nutrients (b12, sodium, fats) which could explain why you are having electrolyte and cholesterol problems.

 

[Rebecca85]

Just been reading through some of your past posts and from our symptoms we could be twins! Have you ever had a brain MRI? Because I did and they found inflammation ( now I'm just waiting for tests to find the cause).

 

[wolfem]

I'm so sorry I hope it isn't anything serious. I had a recent MRI of my spine which showed nothing significant. I had a brain MRI a long time ago. I'll talk to my doctor about it. Let me know what happens.

 

[wolfem]

Darn cholesterol issues! lol. I wonder if they removed more than they told me... I think it can be dangerous if my levels are too low.

Wait. I've got a question. I'm still having this symptom. Do you get a numbing/cold sensation at the middle of your spine if you stand for too long leaning over cleaning, etc.?

 

[Rebecca85]

I haven't particularly noticed it, but then I can't bend over too long before my back cramps up and I have to move around.