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Undiagnosed Symptoms Community

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What's wrong with me?

by Ella_b, May 21, 2008 04:02PM
I'm hoping that someone out there can point me in the direction of what to do...

I'm 30yr old female, who for the last year has been suffering with the following:
Fatigue (so late for work that Im likely to be sacked) (doesn't improve with rest)
Low Iron Stores but not anaemic (on iron tabs constantly for the last year, no improvement - has always been a problem)
Severe PMS including cramping so bad that I have to call in sick at work
Unexplained anxiety which initially manifested itself as panic attack like episodes
Heat intolerance (temps of 17c or more drive me spare)
Chronic sinus (dont know if this is related)
Recurring sore throat, particularly at nightime
and last but not least thinning/ lossing hair on head, dark single nipple hairs, dark single hairs in a line from pubic area to naval.

Ive been tested for thyroid disorders - negative. I dont have psychological issues (been for CBT and to see a psychiatrist). Been to see 3 docs who told me to keep my eye on my symptons and get back to them if they get worse!!!!!

Initially I tried Lexapro and Xanax but had to come off them as they drove me bananas - the first doc I saw diagnosed me with depression - bit of a cop out in Ireland at the moment - i.e. if you can't diagnose it throw anti-depressants at it!

I would be grateful for any advise anyone might have on this, including any tests that could be recommended but particularly any doctors in Dublin, Ireland that are worth a visit... I wont rest until I get to the bottom of this!!!!!

Member Comments (6)

by darlingdivatx, May 21, 2008 04:40PM
A couple of questions....it's my understanding that low iron is anemia. What tests did they do that made the docs arrive at this conclusion. Would you elaborate on this? Have they tested your "ionized calcium", PARAthyroid, and vitamin d levels,?

Also, there was a post yesterday from someone with similar symptoms. She had low ferritin levels that don't respond to iron supplements. There was talk of Thalissima but tests were inconclusive. You may want to check out her post.

by zoedoom, May 22, 2008 01:36AM
To: Ella_b
I'm the one who posted yesterday! Yes, you sound a lot like me. I could have written most of your post myself! We're the same age, too (I turn 30 in a few months). Have you had your thyroid antibodies tested? My thyroid tests are always normal, too, but I had a doc test my antibodies and they were quite high. He figured that the antibodies were interfering with my thyroid hormone, so he put me on medication. It helped immensely, but I'm afraid that was only a temporary solution. I've had hair loss most of my life, and the only time it's ever grown back at all was during my first year or so on thyroid meds.

Also, you may want to do some research on polycystic ovarian syndrome. PCOS can cause excess body hair, thinning head hair, painful periods, and bad PMS. Could you have high testosterone? (I hope you have better luck with that than I do...I've had ovarian problems, but my androgen tests are always normal)

How much iron are you taking? Like darlingdivatx referenced,  I also am not anemic, but have very low iron stores. I had a doctor tell me to take excessive doses of iron (at least 180 mg elemental iron a day). I took more than that  (213 mg elemental iron in supplements in addition to iron in my diet...the RDA for women our age is 18 mg) for two years and my iron stores barely changed! I'm going to see a hematologist soon to get to the bottom of this. If you haven't already tried that level of iron, then it's not a bad idea to go ahead and do it (if your digestive system will allow it, that is!) Of course, that did nothing at all for me, so I stopped doing it, but that's what doctors suggest (I've heard this from two of them). I can't handle this fatigue, I really can't. I've been to 15 doctors about my hair loss. I've stumped every one of them! I am devoted to find the cause of this, like you!

Ask for an "iron studies" test. That will check your total iron-binding capacity (TIBC...to see how well your blood binds to iron), your serum iron level (to see how much iron is in your blood) and your transferrin (which is what transports iron around...I don't remember the details about that). Mine were normal, but if nothing else that proves that I have enough iron in my blood...it's just not getting stored in my body for some reason.

I also have heat intolerance and (more recently) horrible PMS accompanied by crying spells, hot flashes, and severe depression.

I'm sorry you're going through all this, but I must say I'm glad to see someone on here with similar symptoms. Misery does love company, after all.

by Ella_b, May 23, 2008 02:51PM
To: All
Thanks a mil for your excellent posts! Very much appreciated!

I don't have a clue what to ask doctors to test me for - had the usual thyroid tests, they came back "normal" 4 times in the past year.

Only "negative" result was "low iron stores". I've been taking 100mg elemental iron for the past year (as in 365 days) - I used to take it for a week prior to my period (had been doing that for approx 5yrs as I've always had a problem with iron).  All 3 doctors I have visited (who discovered the low iron stores) told me to keep taking the tabs! They are binding my insides up to no end.... I live on spinage/ chick peas etc and as I don't really eat red meat the docs tell me that could be the problem - I wanna scream!!!!!

Vit D was fine....

What is "Thalissima"???

How do you check for PCOS?

I have come across a doctor (through the internet) who seems to be well up on checking everything when you have a "strange" illness, I might make an appointment with him. I am at my wits end with doctors at this stage... I even put myself through going to a psychiatrist to prove to one doctor that I wasn't suffering from depression...

I'm going to ask for the following tests:
Iron studies
Thyroid antibodies

Zoe - I delighted to find someone who understands what I am experiencing. I actually cried watching Ireland on the eurovision the other night - how sad is that!!!!! I cannot explain any of this - although I do think it's hormone related as a pregnant colleague has some of the same issues lol and I am definitely not pregnant!!!!!

Let me know how you get on with the hematologist!!!!

by darlingdivatx, May 23, 2008 04:31PM
If I understand you correctly, the iron is bothering your stomach??? I have a solution...take iron BISCLYCINATE. Solgar is one brand that sells it. The bottle will usually say "gentle iron." It really does help. Also, studies have shown that this iron is more effective than other types.

by KatEyes, May 23, 2008 07:31PM
To: Ella_B
I'm the one whose daughter has Thalassemia Trait. Thalassemia is a blood disorder in which the blood cells are misshapen and the cell types are out of balance. It is similar to Sickle Cell in the respect that those with the full blown disease have severe complications, while those with the trait usually have few.

Your varied symptoms are likely coming from multiple sources. In the effort to chip away at contributors, have you had a sleep study? Fatigue, sore throat at night, anxiety (if at night) could be symptoms of a sleep disorder. If sleep doesn't rest you, there could be something going on while you sleep. May not be your issue, but at this point I'm sure you want to cover every base. Good luck.

by zoedoom, May 23, 2008 11:22PM
I had my thyroid tested three or four times before I found a doctor who wanted to test my antibodies. Some doctors test for antibodies routinely, but I think those doctors are few and far between. High antibodies indicates a condition called Hashimoto's thyroiditis, which just means that you have antibodies attacking your thyroid