Seriously, he was right?

Ok 5 days into taking the pill and guess what?  The pain is better, not quite gone, but better.  Wow!  This means that likely he was right and it is endometriosis.  At 33!! 

We know that it is a relatively new development cuz he has pics in my chart of in there from 2006 when he tied my tubes and all looked fine without any endometriosis patches.  I gotta say this is the LAST thing I really needed to add to my plate with the thyroid issues, iron issues, headaches….blah blah blah.

I go back on the 25th to discuss how I’m doing and what the next option is.  He mentioned doing 3 things.  1.  Staying on the pill.    I already have my tubes tied and had an endometrial ablation for heavy bleeding so I CANNOT have more kids, why be on the pill.  I understand that it is for other reasons but still.  2.  Going on Lupron.    This basically puts you into a chemical menopause so the endometrium doesn’t form.  I did this for only 1 month before the ablation and IT SUCKED BIGTIME.  The hot flashes and mood swings were awful.  I cannot imagine doing it full time!  3.  Hysterectomy.      I give it both actually.  I’d love to be done with it all as I do still get a light period after the ablation but to do best with endometriosis you need to have your ovaries removed too.  I’m  not willing to do that at 33.  I still need the hormones for heart health, breast cancer prevention, etc.  I’m not a big fan of hormone replacement therapy this young either.  Uggh.  What a pain!!

Guess I’ll just wait and see what he has to say and go from there……

More Iron and Endometriosis????

Two appointments today for me.  After working all night I got to start (or is it end) the day by visiting the GYN.  Always a lovely doc to go and visit!!  Actually though I get along great with mine.  He has quite the dark sense of humor so it took me awhile to get used to him but now that I have we get on famously. 

I went in for a “sick visit” I guess  you’d call it.  Suddenly about 2 weeks ago I started having pain in my girly area during certain….lets say….activities….and then just all the time.  So, in I went.  As per my usual fashion, I don’t do anything the easy way and after the exam he told me that he had NEVER had anyone with pain where I have it.  Just lovely (insert eye roll)!  On to the ultrasound room where the tech asks how long ago my c-section was….4 years ago….why I ask….oh nothing…she says.   Uh..no  you aren’t getting that one past me!!!  Turns out I have a fluid collection there at my c-section scar….what!!  Moving on thru the painful exam she doesn’t really see anything else abnormal.  Back in comes my doc.  He thinks I now have endometriosis!!  WTF???  At 33 I’ve suddenly developed endometriosis???  Normal?  Of course, NO!!!  So, onto the pill for a month then come back and see how I’m doing to discuss my next options.   GREAT!!

Home for a nap then on to the hematologist for the iron deficiency.  My numbers aren’t horrible this time.  When I saw him initially my ferritin was 12 up from 7 after three months of oral iron…..whoop whoop!!  So he gave me an infusion, professed me cured when my ferritin went up to 223 from it and sent me on my way.  Really didn’t care when it was down to 115 after 3 months even though I had wondered why.  So, 9 months later here I am back when it’s down in the 50’s and I’m starting to have the symptoms again……so dog tired, starting to be short of breath, having the start of the muscle weakness.  My primary care doc was rolling her eyes but I’m like…hey I’m not getting back to the way I was when they couldn’t figure me out for so long and were sending me to every doc in the state and testing me repeatedly for things like myasthenia gravis.  NO WAY!! 

He thinks my diet just doesn’t meet my demands (hey I’m a demanding woman!!!) and decided to give me another infusion to see how I do.  That is scheduled for next week. 

How I’ve been feeling lately

Figured I should do an update on how I’ve been feeling lately.  I have been getting so many comments on the IV iron infusion post so I thought it was time for an update.  Wish I could say it was great but that is mostly my fault, well I guess not mostly but it’s a combination of my body’s fault and mine.  Let me explain….

My body….  my TSH is off as usual.  One week I bet it’s pretty normal as I feel pretty normal and the next it’s in the toilet.  I can usually tell cuz those week I feel like crap.  Hot, irritable, moody and terribly hungry.  The last time my endocrinologist and I talked she said she has never seen anyone fluctuate like I do.  Not a comfortable thing to thear your doctor say!!!  I’ve been recently doing some more thyroid research and I’d really like to make sure that my thyroid is the only problem and that this isn’t all pituitary driven.  I mentioned this to her yesterday morning as I was leaving work when I ran into her and she said she doubted it but that we could talk more about it at our next appt.  As to the iron…..  my last ferritin is in the low 50’s.  A far cry from the 7 or 8 where I started this whole mess but  also a far cry from the 200’s where I was after my infusion.  My symptoms are all back too.  Not at all like when I started this blog, so I’m not complaining too much!!  But at the same time I’m wicked tired.  I work night shift and I really don’t bounce back like I used to.  That had gotten sooooo much better after the iron infusion.  My muscles are weak again and I get so short of breath climbing stairs etc.

As to why it’s partly MY fault…..  My endocrinologist and I agreed at my last appt that I would call the hematologist and go back to him to see why my ferritin fell so much and that I would go to a GIdoc to make sure I don’t have a slow GI bleed and to be further tested for celiac.  And…………………………..I haven’t done that yet……oops!! I’m just such a procrastinator.  I always think of it either on the weekend or after 5 pm.  But Monday, Monday for sure!!

Seeing a sign

I have been reading a book called Too Busy to Pray:  Slowing Down to be with God by Bill Hybels, and actually I had already read it but need to read it again as I really didn’t absorb enough of it!!!  I’m not at all good at praying.  I find it very hard in all reality.  In all honesty I’m  not a very spiritual person.  It just doesn’t come naturally to me.  You know what I mean, you see those people that are just soooo spiritual no matter what.  They pray for everyone and everything.  I wish I could be like that.  Hence the book….

In reading the book I’ve been trying to pay more attention to God’s signs to me also.  Signs that He is here in my life and that He is answering the meager prayers that I am praying.  This is another weak area for me.  They have to be blatant, smack me on the head signs for me to really get them!!!  But a few days ago I was on facebook and was reading posts by friends and my friend Janette had one that is called “daily message from God”.  Kinda snickering (cuz how realistic could it be????) I read it and then did one of my own….

I figured what the heck….why not?  It will be a good laugh.  Sometimes the daily devotionals I get from Max Lucado are right on for what I needed that day and I know that they are from Him but something on facebook??  Doubtful!!!  But, here I went….

I gave it a go and guess what?  My very first one was so spot on that I knew it was the Lord Himself sending me that message.  I’m sure He was up there saying ”Tracey…you laugh but I’ll use whatever media I need to to reach you in your time of need.  And I’ll deliver whatever message you need to hear”.  I read the message and about cried!!  It summed up things so brilliantly that I couldn’t believe it.  I had to read it twice in fact!!  And then I didn’t laugh….but instead I cried…and asked for salvation.  And knew…….it was a sign.

I’ll come back and post the actual message soon.

Drum roll please……………..Celiac results

And they are……………………………………NEGATIVE.  Told ya in the last post didn’t I????  I knew they would be too.  Nothing is ever easily explained with me.  When I started this medical mystery journey they were looking for myasthenia gravis because of my symptoms and it turned out to be iron deficiency.  Yeah they are related…not!  No one thought to look for iron deficiency because I’m not anemic.  I always have great blood counts.  My hgb usually runs around 13.  The time I gave blood it only went down to 11. 

 

The Celiac thing would have summed it all up nicely.  But nope.  Smack.  Bam.  Back to square one.   And for those that will ask….yes, I ate plenty of wheat in the weeks before my test.   The only other thing is that I don’t always make antibodies to things.  I have antibody negative Grave’s Disease for example.   The first time I had Lyme Disease my antibodies were negative.  Etc, etc, etc.  So, I’m just saying…….

 

The plan now…..I had bloodwork done again today to see how far my ferritin has dropped under 56 in the last month.  Then I go back to the hematologist.  Then I think I will go to a GI also.  Yak it up with him a bit and see what he has to say about it all.  Then maybe have an endoscopy and get the Celiac biopsies done. 

 

Any other suggestions out there?  The Celiac came from Regina so anyone else??????  Please 

The Plan

Had my appt with the endocrinologist today.  My TSH is still down.  0.27 this time.  My T4 is down too.  It sometimes is but not always.  Not surprising they are down since I am still having symptoms.  We talked of going on anti-thyroid meds, but she wants me to wait a bit longer and try to get this iron thing straightened out.  Unfortunately, the Celiac antibiodies aren’t back yet.  She jokingly asked what they are doing with them down there in the lab….lol!  She is so sweet.  Actually, I’m lucky…she’s a great doctor and a great friend too.

 

We came up with a plan depending on what the Celiac test comes back as:

If it’s positive it explains my iron, vitamin D, etc etc that I posted about before.  Then I go see a GI and go on the gluten free diet.

If it’s negative (which I told her it will be cuz that’s just how things go with me!!) then I go back to the hematologist for sure.  And maybe still go to a GI to see if  I’m bleeding somewhere.  Although I don’t think I am as I’m NEVER anemic.  Only iron deficient.  Or to see if the GI has some other take on why I don’t absorb iron. 

 

So that’s the scoop for now! 

“May contain Milk” What?????

Having recently been tested for Celiac disease I’ve been reading a lot of food labels recently.  Actually I’ve been reading food labels since my daughter was diagnosed as milk & soy intolerant at age 2.  But I never used to read them for myself.  Not yet doing any gluten free eating but just reading labels to see how much gluten I eat I can across this interesting label tonite.  It is on a prepackaged Baked Ziti dish (covered with cheese) that I got frozen at work when I missed the open salad bar time. 

 

The ingredient list is as follows:  Enriched macaroni product (semolina, egg whites, niacin, ferrous sulfate, thiamin mononitrate, riboflavin, folic acid), tomato sauce (tomato puree, crushed tomatoes, onion puree, carrot puree, sugar, garlic, salt, soybean oil, sherry wine, spices), italian sweet sausage (pork, salt, spices, sugar, dextrose, extractives of paprika), cooked ground beef, parmesan cheese (cultured milk, enzymes, salt, cellulose to prevent caking, natamycin to protect flavor) food startch-modified, glucona

 

Then comes the allergy information as follows:  Contains: Wheat, Eggs, Soy.  May Contain: Milk

 

Ok Seriously!!!  Last I knew Parmesan cheese is made from milk.  Right there in the ingredients….cultured milk!!  Am I missing something here???? 

Testing for Celiac

Thanks to Regina (who has been a wonderful resource for my commentors….thanks Regina!!!)  I called my endocrinologist before my latest round of lab work and asked her about the connection between Celiac disease and the other problems I have been suffering from.  I told her about the:

• Iron deficiency

• Vitamin D deficiency

• Autoimmune thyroid disorder (Grave’s)

• Generalized joint pain

• Vague abdominal symptoms

• Chronic constipation

• Chronic fatigue

• Chronic gas

• Muscle weakness

 

She said that she hadn’t really thought of Celiac with me but that it surely would put all the pieces together nicely!!  So, I had the blood work for it done today and it is all pending.  It should all be done by my next appointment with her which is on Dec 10. 

 

It would make for an interesting household if I come up positive as my daughter is milk and soy intolerant.  She has her own cabinet of food.  Guess we could each have our own!!   In all seriousness, it would be great just to feel well all the time!!

Asthma….sucks

Had a sick visit with the pulmonologist a few days ago.  I had a cold about a month ago and did my usual routine….lots of fluids and airborne.  Usually works like a charm!  And this time it was too but then my son had to have open heart surgery and being with him in the hospital stressed out and with little sleep it got the best of me. 

 

It ended up developing into a raging sinus infection and ear infection.  I ended up going to a walk in clinic on the Sunday after he was discharged from the hospital as neither my regular doc or the pulm were open then and I felt like I wanted to die!!!  They gave me a 5 day z-pack and some decongestant etc. 

 

I felt better but never really got back to baseline.   I have cough varient asthma not the more classic wheezing type.  So, while the raging sinus infection was gone I never stopped coughing and still had phlegm etc despite having taken the antibiotics.  Not surprisingly I got fussed at for waiting so long to make a sick visit with him!!

 

He said that I never got back to baseline because my sinus infection didn’t fully clear up and I now have a chronic sinus infection that is exacerbating my asthma.  Hence all the coughing and phlegm.  The plan:  continue my advair twice daily thru the winter months, start a new stronger antibiotic for two weeks this time, use afrin for 2 days to clean out the sinuses and use sudafed also to dry them out.  This should do the trick.

 

Keeping my fingers crossed!!!

101 in 1001 Updates

I thought it was time to look over the list and see what I had done and mark them off.  I surprised myself that I actually had done a few things!  Here they are:

 

#33  Save all my son’s Kindergarten projects….I have all of them tucked neatly in a file drawer.  It will be fun to look at them with him sometime in the future!

 

#62 Do a charity walk…This was extra special as I did a walk that meant something to me personally.  One of my sons has cyclic vomiting syndrome and he and I were able to do a walk for it.  I raised nearly $300 for it too.  It was so nice to meet some other parents and other people in general with the same condition.

 

#64 Give blood…..this I did in Sept at Boston Children’s Hosp when my daughter had one of her follow up appts.  We make the trek there about every 4-6 months to see her doctors and so make a day trip of it.  It’s pretty neat to give blood there though too.  They keep it right there and give it to the kids in the hospital.  One adult unit can be give to 4 children there.  Pretty special.

 

#96 Go to Disney…..we went as a family in July.  Had a great time, but then again how can you not in Disney!!!!

 

#100  Spend a night with hubby away from the kids….Just did this over the weekend in NYC.  Had a fabulous time!

Looking at the list I need to get going.  I have a long way to go!!!