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Stomach problems, normal blood tests, Androgenetic Alopecia alopecia???

Discussion in 'AGA Related Blood Work and Doctors' started by *samelia*, Sep 14, 2016.

  1. *samelia*

    *samelia* New Member

    Jun 29, 2016
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    This is my first time posting on these forums, I had the worst appointment at the doctors yesterday and am now at a loss of who to turn to for advice!
    I noticed my hair was thinning maybe 2 or 3 years ago, (I'm now 27, so when I was around 24) it happened very gradually, and I didn't particularly notice any dramatic shed, just getting thinner over time. It got really bad about 1.5 years ago, I noticed when in some photos it looked like I had a bald patch because the hair was so thin where the light was hitting it on the parting on my right side, that's when I started to really worry about it. I was living overseas at the time, but I found a dermatologist and had some blood work done (not sure what, all the regular stuff I think, not sure about hormone levels though - he didn't speak much English) but it was all normal. He said it was probably Androgenetic Alopecia alopecia, ie, hormonal. Back when I was at university I'd been told by a doctor that I 'might' have PCOS, because I hadn't had a period in over a year, and that was probably the easiest diagnosis for her to give me, but it wasn't a clear or definite one by any means (I later realised the period thing was because I was way too skinny (UK size 4), and wasn't taking care of my body properly. Fortunately I developed a much healthier attitude towards food and am now a size 10, have had regular periods ever since). So when the derm mentioned PCOS as a possible cause, I was like 'oh yeah, could be that' - I also get hormonal acne and some facial hair, so I thought, even though I'm not overweight, that could be the cause. They recommended I use rogaine (different brand name over there though), though I didn't start using it right away, because I was scared of starting something I wouldn't be able to stop.

    A few months later, it got even worse, my hair was so sparse, I bought some caboki (similar to toppik I guess) and couldn't go out without it, I started using the rogaine because I figured I didn't have much choice. I didn't notice a dramatic shed from the rogaine, nor any improvement, things just continued to decline. I also took biotin, silica, and msm.

    I came back to the UK in April, to be honest I was relieved to have left my job overseas, since I could barely cover my loss with the caboki any more and didn't feel comfortable being in a work environment. A few months after that I stopped taking the rogaine - it was making me so tired and giving me big bags under my eyes, I get fatigued easily anyway, but it was much more than normal. I found out that rogaine does have this side effect on occasion, and can affect something to do with collagen. It wasn't helping me anyway. I started using joico cliniscalps 3 step advanced treatment instead, just to have something to replace the rogaine with. I didn't notice things get particularly worse when stopping the rogaine, and actually noticed more smaller hairs than normal growing through. I had also started taking saw palmetto, pumpkin seed oil, and fish oil as well as the silica, biotin and msm, and using an essential oil treatment on my scalp 2-3 times a week. Still can't say it's getting better overall though. I haven't been in public (or even in front of my family) without a scarf, hat, or wig on for 4-5 months, it's gotten that bad. I'm sure it doesn't help my hair to be wearing a scarf or wig so often, but I can't even bear to be seen without something on my head anymore. And actually, it's made me feel so much better - I actually like the scarves, they're more comfortable than a wig so I wear them most often, I feel like I can look nice and feminine even if I don't have a full head of hair anymore.
    These pics aren't of me, found them on pinterest, but they're the sort of style I usually wear:
    I'm going to be going back to university soon, and will be wearing headscarves there I've decided. It's kind of good to be starting out in a new place at this point, since nobody will have seen me with hair anyway, so from the start I'll just be the girl who wears scarves. It's a business related course though, so there will likely be professional events too, in which case I might wear a wig, or not...

    Anyway, back to the main point, I went to the doctors in the UK to have some blood tests to check hormone levels and hopefully get a clear diagnosis of PCOS, as well as various other tests for fatigue, hair loss, and also the stomach problems I've had over the last year - stomach pain and/or discomfort, loss of appetite, etc. which I've had on and off. Recently I've had more pronounced abdominal pain as well. Had bloods, an upper endoscopy, and an MRI when overseas which showed up nothing abnormal. I went to the docs yesterday to discuss the blood test results - he was one I haven't seen before, and highly unhelpful. He said everything was normal, and as I'm not overweight and my periods are normal he thought it unlikely I had PCOS. I asked why I'm losing my hair if my hormone levels are normal, he basically changed the subject, and kept doing this - I'd be trying to talk about something and he'd interrupt and ask about something else. For those of you in the US, over here I've found that docs generally act as though you're a massive inconvenience to them, are nothing but a hypochondriac, tell you that you're fine, to go away and not worry. I was wearing a hat - he didn't even ask to see my hair to determine the kind or extent of loss. I started talking about my stomach problems, he asks me what I want to do next, I tell him he's the doctor, he's supposed to tell me, what do they normally do in this situation. I had to really push him just to tell me exactly what the blood tests had ruled out, since my last doctor was equally unhelpful and hadn't told me what they were actually testing for. So I found out that I don't have any infection or anything that causes inflammation in my digestive system, since that would have shown up in the bloods, but when I asked him if there could be a problem that doesn't cause inflammation, he stood up, said he'd already given me a lot of his time (we only get 10 mins per appointment), that I need to stop worrying and go. At this point I got so mad I started crying, I always cry, involuntarily, when I get really angry, and that makes me even more frustrated because I know it makes me look hysterical which makes me cry even more. I told him I wasn't worried (true) just that when I'm in pain I want to know why and I want it to stop - I was feeling really ill the whole of last week, and that's the third time in 6 weeks I've felt like that- I don't want to ignore something that could be a problem. I said I'm tired of doctors not taking me seriously and not giving me any respect, that 10 minutes wasn't enough time to discuss this and that if I had the option to make a longer appointment I would have. He asked if I wanted to make another appointment to come back, and I said not really because I didn't feel comfortable discussing this with him anymore. Then he said that I could see another doctor, and also that he could make an appointment for me to have an ultrasound to give me some peace of mind. I said I'd take him up on that because it was the only way I'd be able to discuss this with someone else.

    I know that the stomach problems could be IBS, but this is meant to be the diagnosis given when other problems are ruled out - it's digestive problems and stomach pain with no known cause - but this was the diagnosis my old doctor tried to give me 1 year ago before any tests had been done. I also know that the hair loss could just be one of those things, that I'm just unlucky and I have to deal with it, and I am getting to a place where I am, mostly, ok with it (I know stomach problems can also be caused by stress and anxiety, so I should mention that, even with the hair loss, I haven't been feeling stressed or anxious since returning to the UK. I was also feeling really good health-wise from April to June/July, so I thought it had just been work related stress that had caused it.) But I also think, could they be connected, and why am I losing my hair if all of my blood tests are coming back normal? I'm going back to pick up an acne prescription, so I'm going to ask for a print out of the test results so I can look at them myself, (and also to see what he wrote on my record because I want to know exactly what he wrote) and hopefully when I have the ultrasound I'll be able to talk to somebody there about my problems.

    If anyone has been in a similar situation, or might have some answers or advice, I'd love to hear it! I'm just not sure what to do, I feel like whatever the cause or diagnosis was, I'd be able to deal with it, but I hate not knowing, and everything appearing, on paper, to be fine, when evidently it's not, or why would I be having these problems?
    Sorry for the long post, thanks for reading! :)

    Update: I got the blood tests from the doctors, and the testosterone and free androgen index are both on the low side of normal, while the SHBG level is actually a couple points higher than normal (125), whereas my understanding it that it would usually be low for someone with Androgenetic Alopecia and PCOS... very confused by that. The only other things I noticed were the FSH and LH levels (4.6 iu/l, 12.3 iu/l)- I'm not 100% sure what point I was in my menstrual cycle, so they're either a little low, or the LH is a little high, according to the reference limits on the printouts. There is some discrepancy (not 1:1 ratio), but I don't know how much difference is enough to be significant. Also my ferritin level is quite low (25), especially considering my fatigue and hair loss, I saw on another thread that low ferritin levels can be a factor, so I'm going to try and raise that and see if it helps.
    #1 *samelia*, Sep 14, 2016
    Last edited: Sep 15, 2016
  2. jump1

    jump1 Established Member

    Sep 22, 2016
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    How r u now

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