This patient support community is for discussions relating to undiagnosed symptoms, breathing difficulties, feeling cold, cough, diarrhea, dizziness, fainting, fever, indigestion, itching, nausea, numbness, pain (chronic), paralysis, rash, sweating, swelling, urination problems, and vomiting.
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.
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.
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!!!!
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.