Another "female Issues" Thread

[disneyfan]

And I forgot to add, I chewed ice for years, cracked a tooth from so much, and that was a major sign of low iron. Had no idea!

[disneyfan]

I don't know what I did that my post was attached to your question. Hope this posts correctly. Sorry...

Here is a good article about homocysteine levels. After reading your post, I had several thoughts for you. Depending on your age, it could be the beginning of menopause.

In all the testing that was done, did anyone check your thyroid levels? The first sign that my thyroid is going hypo (low) is my monthly cycle becoming very heavy.

Also, have your iron levels (ferritin) been checked? Before I figured out the celiac connection, I was very anemic for years. Once my iron levels stabilized, everything else seemed to stabilize. It made a huge difference.

Also, according to this article, you may be lacking in B vitamins and folic acid. Are you taking a good multivitamin? I hope some of this info helps. I don't think I would wait 6 more months to be rechecked. I would find a doctor that could help me much sooner. If you are anemic, that is too long to wait. Hope you get some answers.

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[ohsotired]

Thank you for responding, and for the link, disneyfan.

RE: this being the beginnng of menopause, it may well be. My mother went through it very early, and she keeps telling me that alot of what is going on sounds familiar.

In response to your questions.....

In all the testing that was done, did anyone check your thyroid levels?

My GP tested my thyroid (along with a bunch of other stuff) this past October. Doc said numbers were fine, but after getting test results and posting here, some said that my numbers were low.

I tried to approach that subject with my GP, and she promptly referred me to an endocrinologist (to which I haven't been to see yet). I got the feeling that she was referring me not because she thought I needed it, but rather to appease me.

Results as follows....

Thyroxine...............6.6 (Range 4.5-12.0)

T3 Uptake..............33 (Range 24-39)

Free Thyroxine..........2.2 (Range 1.2-4.9)

TSH......................2.012 (Range 0.450-4.500)

[TSH was also checked last July, with results being 2.238 (Range 0.350-5.500), if that matters]

ANA, Anti-dsDNA, RA Factor, Sed Rate and C-Reactive Protein levels were checked at this time as well. All those also came back "normal" (can post numbers if you like).

Also, have your iron levels (ferritin) been checked?

In all of the test results that I have in hand, I do not see a test (or tests) that specifically say iron or ferritin. I don't have the results in hand from this last round where they were checking for the clotting disorder, but I don't think that's something they tested for. Won't know for sure til I see the paperwork.

The only other thing I see here that may be relevant (outisde of the CBC tests I initially had done back in July) are Folic Acid and B12, done in August of last year at the same time my Celiac Panel was run.

Folate (Folic Acid), Serum............>24.0 (Range>5.4)

B12................34 (Range 211-911)

I am not currently taking any vitamins. I know I should be, but I was a little leery about making the decisions myself on what I needed - I guess I wanted a dr. to tell me what I should be taking, but my doctors have never brought this up. I'm not sure any of them really knows much about Celiac and all the stuff that goes with it.

A good friend of mine just referred me to a nurse practioner that she sees, thinking maybe the NP can help me put this puzzle together. She does everything from nutritional counseling to lab work to gastrointestinal disorders. Maybe it's worth a shot to go see her.

Any other thoughts are welcome. I'm at a point where I think I've got the Celiac/digestive issues in check, but I'm tired.......so tired (physically, emotionally) of these other seemingly random things that are going along with it.

[disneyfan]

Thank you for responding, and for the link, disneyfan.

RE: this being the beginnng of menopause, it may well be. My mother went through it very early, and she keeps telling me that alot of what is going on sounds familiar.

In response to your questions.....

My GP tested my thyroid (along with a bunch of other stuff) this past October. Doc said numbers were fine, but after getting test results and posting here, some said that my numbers were low.

I tried to approach that subject with my GP, and she promptly referred me to an endocrinologist (to which I haven't been to see yet). I got the feeling that she was referring me not because she thought I needed it, but rather to appease me.

Results as follows....

Thyroxine...............6.6 (Range 4.5-12.0)

T3 Uptake..............33 (Range 24-39)

Free Thyroxine..........2.2 (Range 1.2-4.9)

TSH......................2.012 (Range 0.450-4.500)

[TSH was also checked last July, with results being 2.238 (Range 0.350-5.500), if that matters]

ANA, Anti-dsDNA, RA Factor, Sed Rate and C-Reactive Protein levels were checked at this time as well. All those also came back "normal" (can post numbers if you like).

In all of the test results that I have in hand, I do not see a test (or tests) that specifically say iron or ferritin. I don't have the results in hand from this last round where they were checking for the clotting disorder, but I don't think that's something they tested for. Won't know for sure til I see the paperwork.

The only other thing I see here that may be relevant (outisde of the CBC tests I initially had done back in July) are Folic Acid and B12, done in August of last year at the same time my Celiac Panel was run.

Folate (Folic Acid), Serum............>24.0 (Range>5.4)

B12................34 (Range 211-911)

I am not currently taking any vitamins. I know I should be, but I was a little leery about making the decisions myself on what I needed - I guess I wanted a dr. to tell me what I should be taking, but my doctors have never brought this up. I'm not sure any of them really knows much about Celiac and all the stuff that goes with it.

A good friend of mine just referred me to a nurse practioner that she sees, thinking maybe the NP can help me put this puzzle together. She does everything from nutritional counseling to lab work to gastrointestinal disorders. Maybe it's worth a shot to go see her.

Any other thoughts are welcome. I'm at a point where I think I've got the Celiac/digestive issues in check, but I'm tired.......so tired (physically, emotionally) of these other seemingly random things that are going along with it.

I think the referral to an endocrinologist is a good idea. The ranges for thyroid vary and some doctors and patients find that if the TSH is above 2, patients may start to have symptoms of hypothyroid. I know personally that if my TSH is above 2, I gain weight, feel sluggish, and my monthly cycle is completely off.

From the results you posted, your B12 is extremely low. That would explain some of your exhaustion and dizziness. Google B12 levels, tons of info. You really should take a multivitamin. There are many that are gluten free and safe to take. Nature Made makes a multivitamin and they also have a Balanced B supplement that I would look into. If you do a search on this site, you will find many people have to take B12 supplements for a while.

I would ask to have your ferritin levels checked by whoever you decide to go to. If you are anemic, you need to know and start iron supplements. My endocrinologist doesn't usually test for that unless I specifically ask. Do you get legs cramps or restless legs? If so, that's iron deficiency.

I hope you get some answers, and I would encourage you to pursue further testing or seeing a doctor sooner than later. You don't want this to continue when you can help yourself feel better.

[ohsotired]

Whoops.........one small typo in my last post.......B12 was 634 (not 34). But again, that was last August, so it could be very different now, especially after the whackiness my hormones and total body seem to be going through.

I think I will have it checked again, along with the ferritin too. And I think a visit to the endocrigologist may be a good idea.

Funny you asked about restless legs and leg cramps......

The restless legs started a few months back, and I didn't think much of it except that it was really annoying. I've had pretty severe leg cramps the last few days, but only in my right leg.

So I'll mention all this to my GI on Wednesday, but I think I'll be calling either my GP or that nurse practioner in the morning to see when I can get in. I sure don't want to wait the six months the hematolgist recommended.

[ohsotired]

Saw the GI yesterday.......love this guy more every time I see him. He's obviously done his research (he knew very little about Celiac when I first saw him, but he was willing to learn, and obviously has).

I explained to him some of the things that had been going on (the irregular period, the extreme fatigue, the ice eating - think I forgot to mention the dizzy spells though) and he had his PA do a blood draw to check for low iron & B12. He's also referring me to a rhumetologist (again - he referred me back in August after I mentioned joint pain in my right hand, but that went away and I never made the appointment) because of some other things I mentioned to him (extremely dry, itchy skin, dry gritty eyes and dry mouth, among other things) and the 'elevated ANA' the hemotologist mentioned.

So I'm waiting on blood test results and will be making an appt with a rheumetologist.

Sigh. I just want to feel good again. I hope we figure this all out soon!

[Jestgar]

I admire you pursuing the quest for answers. And thanks for sharing the steps as you do it, it somehow helps to know other people also have hurdles to jump.

[ohsotired]

I think that's a big part of what's compelled me to post about all of this, Jestgar. If it could somehow help someone else jump through less hoops, or spark some questions they hadn't thought of to ask their doctor.......

I have to admit, though, I'm tired of this. I'm tired of seeing doctor after doctor, and I just want some answers. But I feel guilty about feeling that way too. I know there are members here who have more serious and more debilitating symptoms than I do. I think about that, then I doubt myself......"maybe I'm just lazy, not exhausted". Oh that lovely mental merry-go-round in my head. LOL

Anyway, I'll keep posting updates on this until we figure it out.

Oh, I remembered another thing the hematologist said. Apparently I have two mutated MTHFR genes. I don't remember which particular genes though. I have lab results coming in the mail, and hopefully I can decipher it all. He didn't seem to think this was a big deal either.......

[Jestgar]

I think about that, then I doubt myself......"maybe I'm just lazy, not exhausted". Oh that lovely mental merry-go-round in my head. LOL

Anyway, I'll keep posting updates on this until we figure it out.

Oh, I remembered another thing the hematologist said. Apparently I have two mutated MTHFR genes. I don't remember which particular genes though. I have lab results coming in the mail, and hopefully I can decipher it all. He didn't seem to think this was a big deal either.......

YOU ARE NOT LAZY!

Sorry to yell at you like that, but I used to tell myself the same thing. Now that I'm finally crawling out of my hole I'm astonished that I managed to function at all.

I read up on those MotherFu MTHFR genes once. All I remember is that the were associated with migraines. What did he tell you about them (or I guess I could just go look them up again....if I weren't so lazy )

[Jestgar]

oh wait

hyperhomocytenemia, which is an elevated level of an enzyme called homocysteine found in blood plasma.

didn't you have elevated homocysteine levels?

[ohsotired]

Yep. From what I read (and it was just super quick reading), folic acid and B12 supplements can help bring it down. He didn't say how elevated it was though, just wanted to wait 6 months and test again. My thinking is that I suffered with the digestive issues for so long before figuring out what it was, I'm not real keen on the "wait and see" attitude. I'd rather be proactive about it.

But I'm not a doctor so what do I know, right? Hmmmmm.......is 34 too old to go to med school? LOL

I know I'm not lazy. But dang do I feel that way a lot lately. And I'm not great at expressing just how tired and run down I'm really feeling, so the family doesn't quite get it. Which doesn't help any.

[ohsotired]

Still waiting on the results from the iron/B12 testing, but got my test results that indicated the MTHFR/homocysteine/ANA issues.

And I'm PO'd. There are notes written on these lab results (although not sure who wrote them), and no one ever mentioned ANY of what was written here!

Such as..........

Anti-Nuclear Antibodies...............POSITIVE

SPECKLED PATTERN

HOMOGENEOUS PATTERN

H 1:40

(handwritten notes say "we can retest in a year and she can tell her PCP about it")

Ummm......yeah. If no one tells me, how can I tell my PCP?

And this, written next to the Protein C Activity and Protein S Activity results........

"Tell her she is + for a disorder but a very mild one. I would recommend 81mg of aspirin daily & have her tell any doctor before any surgery"

The hematologist never mentioned any of this, so I'm thinking he didn't see these results. He just took the 'wait 6 months & see' stance. But he mentioned 'elevated homocysteine' levels, which there are no notations next to on the lab results at all. (Homocysteine was 7.9 with a ref range of 5.0-12.0)

So what do I do with this information? Should I seek another hematologist's opinion, with all my lab work in hand? Or should I make that appt with the Rheumatologist and go armed with all this info?

Oh, and the MTHFR mutations I mentioned were C677T and A1298C, both heterozygous. Whatever that means. (I did some research but can't wrap my brain around it at the moment......)

[Jestgar]

I'm not an expert, but I can pass on some things I've heard, and others I've looked up.

The first is: 1:40 is not high, at least not high enough to be indicative of a specific disease. It could mean nothing, or it could be a byproduct of something else going on in your body. My guess is that's the reason they want to retest in a year.

The elevated protein C and Protein S suggest that you might be at an increased risk for blood clots (hence the aspirin).

I'm closer to an expert for this next part:

Your two MTHFR mutations show that you have one normal allele (at each locus) and one polymorphism (at each locus).

A polymorphism is NOT, by default, a bad thing. Many polymorphisms are ethnically distributed.

For example:

...studied geographic and ethnic distribution of the 677C-T polymorphism in the MTHFR gene in more than 7,000 newborns from 16 areas in Europe, Asia, the Americas, the Middle East, and Australia. The TT genotype was particularly common in northern China (20%), southern Italy (26%), and Mexico (32%). There was also some evidence for geographic gradients in Europe (north to south increase) and China (north to south decrease). The TT genotype frequency was low among newborns of African ancestry, intermediate among newborns of European origin, and high among newborns of American Hispanic ancestry.

The two you reported have been linked to a variety of diseases, but you are HETEROZYGOUS. You have one "normal copy" ("normal" based on the Caucasian genome). If you have a mixed race ancestry (even a bit of native american), this is probably the source of your polymorphisms.

Why am I bringing up race? All of Mexico is not dead. If you have an ethnically linked polymorphism that predisposes you to some disease, you probably also have a compensatory polymorphism that mutes the problem.

So I guess my long winded answer is:

Sure, bring it up to the rheum, but don't stress over it. Keep it in mind if you decide to get pregnant, keep an eye on your blood pressure, take your aspirin and your folic acid, and be happy that you now know how to take care of yourself.

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[ohsotired]

Another update.......

My iron is apparently low enough that they're suggesting iron infusions.

They say my B12 is fine.

Haven't seen actual numbers yet, but they're on the way in the mail.

So this could be the reason for the weird dizzy spells, the fatigue, and the recent RLS type symptoms. I have no idea yet how many infusions they will want to do, but should hear something in the next week or so.

In regards to the 'female issues', so far no other really weird cycles (knocking on wood - can feel symptoms of the next one coming on).

[hannahp57]

i was sick for three months solid before my diagnosis. i didn't eat, at all, and i stopped having my period for three months. after going on the gluten free diet my cycle regulated but it was completely different than it had been before. before, i had cramps, nausea, headaches, everything. they typically last 8-9 days. after the gluten free diet, the cramps never came back, nor did the nausea or headaches and instead of 8 days they are about 5-6 and very light. i have always wondered if there was a coincidence here or if the diet had anything to do with it. they weren't regular either until i got on the pill. i also started having severe depression about once every three or four moths on the first few days so the pill helped that too

anyone know anything about this?

[fripp017]

She was visiting pretty regularly every 28-30 days.

And here I am - DAY 23 of bleeding (to include the few days of nothing early on).

This has been the strangest period I have EVER experienced, and I'm a little freaked out that something serious is going on. I'm feeling fatigued (moreso than usual) and have been a little light headed a few times over the past couple of days. I'm concerned I might be becoming anemic.

There reason I was actually, eventually, diagnosed with Celiac Disease is because it all started with abdominal on top of irregular bleeding. I started having "normal" menstrual bleeding two weeks after I just finished my last period. I am also pretty regular (28 days) and I bled for 12 days straight, not always heavy but enough to have to use some kind of napkin. When I visited the ER, the nurses initially thought I was having a miscarrage, but I was on the Mirena so it was very unlikely. Then the doctor told me I was just having cramps, but his assistant ordered an pelvic ultrasound. The ultrasound only showed "normal" sized cysts. Then I spent a month in and out of the female doctor's office. They couldn't find anything, but I was still having serious abdominal pain. Eventually, I got to the GI specialist (after 3 weeks of unnecessary antibiotics, removal of the Mirena, and 4 to 5 pap smears and pelvic exams).

I have been on the pill now for 4 months and my menstrual cycle still isn't back to "normal." It is off a couple of days and the bleeding is still irregular and the cramps are worse! I am considering going back on the Mirena since it wasn't the problem and it cuts out most of the bleeding anyways. You might want to look into that. I am only hesitant to go back on because they initially thought that was my problem, or that I had a uterine infection because of it. There was nothing, and I loved not having to take a pill every day!

Good luck and I hope they find something!

Jessy

[ohsotired]

hannahp57 - I'm so sorry you were so sick! Glad you got a dx and are on the road to recovery! My first few periods after going gluten-free were a breeze as far as PMS symptoms went (bloating, cramps, moodiness, etc). Then I had the month long ordeal, and since then everything is like it used to be. Cramping in my lower back/lower abdominals, bloating, extremely irritable, etc. I sure hope it goes back to little or no PMS symptoms, because this is the pits!

fripp07 - Thanks for posting! Sounds like you had quite the ordeal as well! Glad you're on your way to recovery! My doctor has advised against me going on any form of BC that contains any type of hormones (pills, IUD) - I'm 34, still a smoker (working really hard on that part) and have a "mild clotting disorder" so blood clots are a risk. I'm actually leaning very heavily towards Novasure/Essure (endometrial ablation, permanent BC ie tubes tied). That won't help at all with symptoms, but it will help with the heavy, long periods.