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I'm perfectly healthy....NOT

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Old 07-11-2011, 05:37 PM   #1
Join Date: Sep 2008
Location: australia
Posts: 9
Annie75 HB User
I'm perfectly healthy....NOT

I'm at my wits end. I'm a 36 year old female. I am exhausted, aching, brain dead and infertile. Plus when I'm really tired my eyes are too sore to *look* with. Often I feel 'too tired to breathe and too tired to sleep'. This is not new, I'm just in a flare up stage at the moment (happens every 4-8 weeks) and I have been like this as long as I can remember but I soldier on living for the good days.

My twin sister has almost identical symptoms/test results.

I have suffered recurrent miscarriage and am now infertile. About once a year when I can't work because of this I go through a 'desperate to find answers stage'.

All I have to go on are a few (unrelated? related?) test results and not much else. Is anyone able to point me in the right direction to finding any answers? I truly feel I can't go on like this.

All my test results are NORMAL no matter how bad I'm feeling when they're taken (incl crp, esr, celiac, rheumatoid, lupus etc). What does show up is this:

Testosterone: virtually non existent (well below range)
DHEA: virtually non existent (well below range)
Thyroid: Confirmed Hashimotos Thyroiditis (medicated with Thyroxine)
Morning ACTH: very low (below range) but cortisol within range
Immunoglobulins: IGg normal, IGA low, IGM fluctuates normal - low, IGg3 low
Premature Ovarian Failure (early menopause): Low AMH, High FSH on day 3 of cycle.
Brain MRI (pituitary): normal

All of these things have all been dismissed by my doctors as meaning nothing.

3 months ago I started a Gluten Free diet and felt FANTASTIC...for that whole time. It was like a miracle. Then last week BAM! I'm back to where I was. I'm hoping it's just a low ebb but I'm so afraid I'll never be normal. Can anyone help me?

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Old 07-12-2011, 05:05 PM   #2
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Join Date: Mar 2011
Location: Melbourne, Vic, Australia
Posts: 22
gbear76 HB User
Re: I'm perfectly healthy....NOT

Hi there,

Just a few thoughts thoughts for you, not sure if any of it will help or be relevant. I have also had a shed load of tests done in the last year to try to find answers. I am currently diagnosed with hashi's, fibromyalgia and lactose intolerance. I still am not 'well' and just want to feel better. Anyway.......

You have hashimoto's and are on thyroxine, but how often do you have your levels checked? And does your doc test for FT3 and FT4 as well as TSH? You can still have symptoms if your meds aren't enough for you, I know I did and ended up having an increase in dose.
Also, it is possible you have fibromyalgia. It seems to be a bit related to hypothyroidism. And you get 'flares' of it like you describe. Lots of pain, extreme fatigue etc. I was told I have it after the thyroid meds did not alleviate my symptoms. Might be worth trying to get your doc to give you a referral to a rhematologist? Not sure how helpful your doc is but if they are not willing to help you I suggest you try elsewhere if at all possible.

As for feeling great on gluten free, did you/do you have tummy troubles? Not sure if this relates to you but I always thought I had IBS made worse by bread/pasta etc for over 15 years, but my doc recently sent me for hydrogen breath testing. Came out that I was lactose intolerant. Lactose is in a lot of foods, not just dairy. (I am not one to drink/eat a lot of dairy so never put my tummy troubles down to it) The tests are not expensive, I paid AUS$55, but they are not rebateable by medicare.

Not sure about most of your tests, but I'm sure that even us females need some testosterone don't we? I would check again with your doc.

Sorry you are feeling so bad and hope that this bad spell passes. It is very frustrating not getting answers and I get that you feel you will never be normal. Best of luck and keep pushing. Please keep us posted on how you go.


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Annie75 (07-16-2011)
Old 08-03-2011, 03:55 PM   #3
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Join Date: Jul 2011
Location: Long Island, Ny
Posts: 23
LeaBeans HB User
Re: I'm perfectly healthy....NOT

I've been to about a bajillion doctors as well and have had no answers. I've been to a gastro, neurologist, rheumatologist,endocrinologist,regular primary care physician, gynecologist,urologist, and now recently a immunologist. first off, let me just tell you I have had done alot of tests, and until the other day I had been under the assumption I have had all the necessary tests done to help figure out what's wrong with me but, according to my immunologist after looking over my blood test results from other specialists she claims I was never tested for many things that could have contributed to my symptoms.

Also, I asked her if it is possible for an immune disease to not show up on blood tests and she said, absolutely. She also explained that many people end up going to her as a "last resort" because, they never got any definitive answers from previous doctors so, I would honestly recommend going to an immunologist. check to see what their patient rating is. I now have to go by that in order to avoid wasting time with retarded doctors.

I also found out that I was MISDIAGNOSED with poly cystic ovary syndrome and was taking medicine that was having an adverse reaction with my body so, It is possible for doctors to not have a clue on what to do. So many people are in your position and have the same exact symptoms and get no help. My doctor also recommended that if the 14 viles of blood taken today find out nothing then she would refer me to a hematologist (blood doctor) who could possibly decode some of my lab test findings for me and possibly have a better idea on what may be going on with me. Last resort, is to go to a John Hopkins research center and see what they can do for me. You may find yourself doing the same thing.

Last edited by moderator2; 08-03-2011 at 04:02 PM. Reason: please do not post a commercial website

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