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.
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.
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:
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!!!!
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.
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.
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 and inflaming it, making you hypothyroid. I wasn't hypothyroid, like I said, but I responded well to medication...at least I did in the beginning. I found my doctor on thyroid-info.com. I looked up Dublin and there's one doctor listed with a positive review. I don't know if that helps. There are more listing for doctors in the United States, where I live.
PCOS can be tested for with an androgen panel. They check your testosterone, FSH, DHEA, and something else I don't remember. Sometimes your doctor will want you to get an ultrasound so they can see if your ovaries have lots of pearl-like cysts. A lot of women with PCOS have insulin resistance, which was a big problem for me. I'm on Metformin to keep my blood sugar low and that helps a lot. My doctor said I should avoid carbohydrates. Now...my androgens were normal and my doctor never ordered an ultrasound. I was just given Metformin to treat the insulin resistance. Most women with PCOS are given a birth control pill or some kind of anti-androgen to alleviate symptoms. I wasn't since my hormones are supposedly normal. My new endocrinologist does not think I have PCOS because my hormones were normal and I have regular periods. I never got an ultrasound until I had a large cyst (15 cm) on one ovary. I had my right ovary removed when I was 28, and I experienced a severe depression after that. I did some research, and apparently having an ovary removed causes estradiol levels to plummet, which is similar to what happens with post-partum depression, so I think a lot of my PMS/mood stuff is hormonal. Even with only one ovary, though, my hormone tests are always 100% normal. I cry at weird things, too.
As far as bloodwork, though, we're similar in that my low iron stores has been my only "negative" thing.
I know what you mean about the depression diagnoses. I went to a doctor who told me that I was gaining weight because I was depressed and ate too much (he didn't even ask me how much I ate or what I was eating) and he told me that my hair was falling out because I was depressed and therefore stressed out. Nevermind that I was gaining weight despite spending 16 hours a week at the gym and my hair started falling out when I was 10 (I've only got about 30% of my hair left!) That would depress anyone!
I find your heat intolerance interesting, too. I live in a cool climate, and often when I go indoors from being outside, I'll immediately start sweating profusely, even though it's normal room temperature. 17c sounds about my level of tolerance, too (Ok, I had to visit an online fahrenheit degree converter to find out what that meant, but yeah...sounds about right). I have night sweats, though my feet get so, so cold. Very odd.
My appointment with the hematologist is June 13th. I'm terribly nervous about it!