My ongoing mystery health problem

My blood tests are back...the only values which are off are oestradiol, which is LOW, and a few other things which having looked them up would point to a problem with my liver, though my liver came back "normal" (apparently nothing much happens until you have actual liver failure though!).

My doctor thinks I have PCOS and Iis sending me for an ultrasound. If I do have PCOS, which I thoroughly doubt, I don't really have any of the right symptoms, then I am sure that it would still be more of a symptom in itself than a cause, as I never had any of this a couple years ago.

The weird thing is, if my oestradiol is low, how come I am overweight? Oestrogen packs on the weight if I remember correctly, so I am a little concerned that if it does go back to normal I will suddenly become a balloon!

Not that is really the problem right now, the main thing is I have thyroid symptoms, fatty liver symptoms, so many symptoms of all kinds of things and yet the cause is still evading me. I have tried adjusting my diet, my sleep, my work, my digestion via supplements, there's not much I haven't tried but nothing has made any improvements. I feel like I am navigating towards a unmarked island without a map, in the dark, while its foggy. I have read so much and I'm still going round in circles. I am sure there are lots of people who feel like this and I sympathize!

So the purpose of this loooong post is just to say shout out to anyone who has experienced this and I would love to hear from anyone who has any ideas.

Thanks so much.

6 Replies

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  • Did you manage to get your ferritin, vitamin B12 and folate levels up? Have you had a vitamin D test? If so what is the result.

    What is your TSH, FT4 and FT3 plus ranges?

  • All my thyroid results were normal, in mid range. I have been taking b12 and d3 everyday for about 6 months. My b12 test was mid range about 4 months ago, by rights it ought to be perfect now :)

    I never had vit d done but that should be fine also as I have been taking it for ages too. This is why its all such a mystery. I am lacking in nothing and yet, nothing is working!

    Thanks for taking the time to reply, I really appreciate it.

  • SP,

    The liver is important as where most thyroid hormone conversion is done.

    Women with eating disorders may have low levels of estradiol. Are you still eating well ? ? . Adequate oestrogen is also important for bone health and our brains and low levels can result in depression and menopausal symptoms such as hot flushes and vaginal dryness. It can also indicate PCOS.

    Are you having periods ? ? …Even if your ovaries have switched off you should still be producing a little estradiol in fat tissue, etc & the adrenal glands … putting more strain on them…

    Oestrogen should be balanced with progesterone and imbalances can effect thyroid hormone. I read that estradiol test timing is important but hard to establish if your monthly cycle is kaput.

    Oestrogen does pack on the weight ... all boobs & hips. I am evidence of this after starting HRT in feb. If low oestrogen is stopping your thyroid meds from working, your weight gain is probably from low thyroid hormone. A resumption of oestrogen levels would hopefully make thyroid meds work better and weight would even out.

    Is your low estradiol level being investigated ? ? ...

    .

    Oestrogen

    yourhormones.info/hormones/...

    .

    PCOS

    patient.info/health/polycys...

  • Thanks for your detailed reply. I am not currently onthyroid meds at all as my levels are normal and Iit was therefore assumed my thyroid is fine. No, the doctor seems to be fixed on the pcos idea, not actually interested in the low estrogen - and the thing is if it was pcos I feel sure my testosterone etc would be messed up too, and they are all fine.

    I am eating very healthy and plenty of food, good carbs, good protein, good fats, not stuffing myself but I don't get too hungry. I feel I am eating the right amount and I am getting alot of nutrients, anybody else with my lifestyle would be looking like a film star! Not so here... ;)

    And no, no periods. I've only had 2 in my entire life!! I can't say I miss them but I don't like to think what Iits doing to my bone density. Its like I have menopause already.

  • gosh your symptoms sound like mine. I have a mystery illness too, and a lot of what you say resembles what I'm experiencing. If you do have PCOS then that can cause weight gain. Estrogen should not make you gain weight, I know other people say they experience this and everyone is affected differently but ive been on hrt since I was 27 (now 31)and it had no impact on my weight at all (even though ive got weight complaints which started prior to hrt)but if you have PCOS you there may be the possibility your insulin resistant? (I'm not sure if you've had this looked into as yet but I can imagine you will be tested for this if its confirmed you have PCOS (or if hey suspect so) have you had a bone scan at all?

  • I haven't had the scan yet and honestly I may cancel it, as not everyone with pcos even has visible cysts. All they are going to do is throw estrogen pills my way and then I won't be getting to the root of the problem, whatever that is - my instinct says it is not pcos (though I know thats not exactly 100% reliable, lol!). Pcos does not make your liver and abdomen swell up, does it? Or cause myxedema? Or turn up magically and randomly right after anorexia recovery? It seems suspect to me - I think I am simply going to get wrongly diagnosed this way. I am thinking of going the holistic route with herbal medicine, acupuncture, etc. I am pleased for you that you didn't have weightgain from HRT - one less thing to worry about!

    Thanks for your help. Much appreciated.

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