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!!! 

Thyroid and Iron updates

I missed my last thyroid appt (oops, forgot and overslept!!).  Actually that isn’t like me at all but my 4 year old son had had open heart surgery the week before so my mind was in another place.  I got the appt rescheduled for a month later but knew something was up with my thyroid.  My TSH was fairly normal at my last visit but I just haven’t been feeling right lately.

 

Hungry, irritable, hot, irritable, hungry, hot, irritable, hungry, hot, oh and did I mention irritable!!  And my hair is falling out in droves!  If only I was losing weight.  Instead I’m actually gaining because I’m eating like a horse from being so hungry.  Did I mention I’m irritable too?  Oh and hot?  Terribly hot!! 

 

I ran into my endocrinologist at work about a week after my missed appt and told her how I’m feeling (remember….hungry, hot, irritable…thought you may have forgotten by now  ) so she said to go ahead and get my labs done.  TSH came back at 0.28.  Not my lowest but close.  Certainly explains my symptoms (no don’t worry I won’t go over them again!!) 

 

When she called me back she told me that she wants me to consider going on antithyroid meds.  That’s a first.  I’ve been on this Grave’s Disease journey for around 3 years now and my numbers fluctuate all over but this is the first time she has mentioned this.  It sorta shocked me!  But she thinks this may help it go into remission.  Up to this point, and now still really, I’ve been subclinical, meaning that all that is off is my TSH.  My T3 and T4 are both normal and except for now and then they always are.  Usually you don’t treat if it is subclinical.  But we’ve both had enough.  She had figured by now I’d be better and I’m just done with feeling this way. 

 

My next appt is December 10th.  I’m to get labs done again on the 1st and we will see what they are then.  If they aren’t back to normal then we are going to have a serious discussion about going on antithyroid meds.  Anyone out there have any experience with them?  If so, I’d love to hear from you…..

 

As to the iron update….when I got those last labs done I had my iron studies done too.  When I saw the hematologist last my iron level was 115.  It had been over 200 a month after the iron infusion.  He wasn’t concerned that it had dropped at the 3 month appt and professed me cured.  But now I’m down to 56.  And as you know, if you have been following me I had a uterine ablation done so I don’t bleed much anymore monthly so not sure where I’m losing the iron from.  Also all the symptoms that I had when I started this blog (fatigue, muscle weakness, shortness of breath, etc are back).  Gonna talk on Dec 1st to the endocrinologist about that too and see if I need to go back to the hematologist.  Uggh….does it ever end?

Neuro/Headache appointment

I forgot to add to the last post that I had to get up this afternoon to see my neurologist.  Uggh to say the least!!  I go every 4-6 months to see how my headaches are.   I get atypical migraines and tons of tension headaches.  I am still getting quite a bit more than I would like currently but he thinks it’s due to my low iron so for now we wait it out and hope for the best.  Then see him again in August and see if we need to make any changes then.  Keeping my fingers crossed that he’s right.  I’ll be calling if not…….

Cryoablation Done

Glad to have that over and done with!!  The procedure itself wasn’t too bad.  Even with 10mg of oral valium I watched the entire thing and chatted with the gyn doc and ultrasound tech!!  It took maybe 20 min or so.  Then they asked me to sit up….

And I thought I would die!!  That is when the pain hit.  I actually thought I was in labor again!!  It was that bad.  But after a few tense minutes it eased up and I was able to get up and walk out.  And then…..

I decided I needed to go to the bathroom real quick before leaving.  That’s when I started bleeding.  They forgot to tell me that might happen!!  So, got home and slept all day like the good doc told me to.  Now awake and crampy (and crabby!!) but doing ok.  Hopefully it will all have been worth it.  We’ll see in a month I guess when I find out if Aunt Flo comes to visit or not…..

Almost there….

I had my lupron injection and I gotta say that menopause is NOT something I’m looking forward to!!  It is medication induced on my part but man these symptoms suck!!

Today I went in to get my cervix softening gel placed so I should have quite the crampy night at work I’m told.  I guess we’ll see.  Then first thing in the morning I go to the gyn office for my cryoablation procedure. 

Why would I work all night before it you ask?  That is what the doc recommended actually!!  He said then the valium he is giving me would kick in and I could just sleep all day.  I’ll let you know how it goes!!

IV iron infusion–a long day

Today I had my IV iron infusion and it was quite the long appointment.  4 hours!!  I had never had IV iron before so I had to have premedications and a test dose then wait before having the actual dose.  So the day went like this:

Got to the appointment at 9am.  Got my IV in after 2 sticks.  The first one was in my left hand and that one hurt like the dickens.  The nurse who put it wasn’t very good at it and I’m gonna have a terrible bruise there.  But she was finally successful in my right arm.  Then the premeds each which took about 10 mins:  benadryl, zantac and a steroid.  Then the test dose over an hour.  At this point they watch closely for any reactions.  I guess anaphylaxis is common with this drug hence the premeds and test dose.  I had no issues though so onto a bag of saline over an hour to wait for any delayed reactions.  When that was over it was onto the real thing.  I wanted to kiss the bag!!  But instead I just took a picture: 

 

               

And another of the lovely stuff going in:

An hour later it was done.  It was 1pm at that point.  I was starving and out of there!  In a month I will find out if that is it or if I will need another. 

Iron deficiency appointment

FINALLY the long awaiting beginning to an end.  At least that’s what I’m hoping for.  I’m so hoping this is the answer to all my symptoms. 

I saw the hematologist today and we went over my medical history thoroughly.  He agreed that iron deficiency is probably the cause of all my symptoms that I mention here.  We talked about the work up I had done previously and what my primary doctor had said about this being normal since I’m not anemic etc.  He was quite thorough and answered all my questions.  He also agreed that the cause of the deficiency is likely the heavy menses and was quite happy to hear that I was having the uterine cryoablation done. 

Then he basically gave me 2 choices:  1)wait until after the ablation and stay on oral iron and see if it works after more time or 2)have a dose of IV iron for better absorption.  We agreed as a team that choice #2 was better since I had already done the oral iron for 3 months without much difference.  He said I was actually someone who doesn’t absorb iron through my GI tract very well. 

I will go back to his office tomorrow morning to have my iron infusion!  I will be there 4 hours………wow!  Since I have never had it I have to have pre-medications and then a test dose before the full dose.  He said if its going to work I will feel a difference in about 2 weeks.  I go for my follow up blood work in a month along with another office visit with him.  Originally he thought I would need several doses but once I told him about the upcoming ablation he is hopeful that this will be the only dose I will need!  Keep your fingers crossed and say a prayer for me please!!

Iron deficiency–second opinion

Since I have such conflicting opinions on this iron deficiency without anemia nonsense I decided to take matters into my own hands.  Sometimes being a nurse has it’s advantages.  Wink wink!  This morning after work I ran into one of my hospital’s best oncology/hematology specialists and ran my story by him.  He did agree that whether iron deficiency without anemia needs to be treated is still controversial at this point.  But he said if someone has symptoms of it then he would always choose to treat.  Then if their levels become normal and they still have symptoms then they need further work up for the symptoms.

Well, anyone who has read my blog for any amount of time knows I already had the work up! 

He said he would like to see me in the office with all my labwork I have had up to that point and we would go from there.  He also said that a low ferritin is common in a woman my age but that 7 & 12 are quite low and that he would like to see me around 100!!!  I went home and called his office and my appointment is scheduled for 4/28.

Now I’m really confused

All this iron stuff is really confusing me.  I have my endocrinologist who is saying that my iron being so low is not good.  And that makes total sense to me.  You need iron to make blood etc.  So not having much cannot be good, right?  Plus I don’t feel good.  That is why I started this blog in the first place.  Because I had all these crazy symptoms:  fatigue, muscle weakness, shortness of breath with any exertion, difficulty swallowing.  And for those I had this HUGE work up as everyone thought I had myasthenia gravis.  But that was all negative and no one could figure out what was wrong with me.  Then the symptoms got better for a bit but then they have come back.  Not as bad but they are back.  Also back is the double vision.  It’s back with a vengeance along with the eye movement disorder that the eye doc had I think called superior oblique myokyma.  I had always thought the double vision was bad but the movement disorder is so much worse.  And they are here together making it double awful. 

My endocrinologist tells me based on my results that I need more iron but that she isn’t an iron expert and to call my primary doctor.  So I do and the short version of that story is that she tells me that since I’m not anemic and I’m a female who still gets my menses this level of iron deficiency is normal.  WHAT?????   Along with how I feel it’s normal???  Who do I believe?

So I scour the Internet and come across this article.  And it pretty much describes me and how I feel.  And it talks about how unrecognized this problem of latent iron deficiency is.  Latent meaning that you are iron deficient but NOT anemic.  So I call the primary doctor again and basically get the same response.  Take a multivitamin with iron if it will make you feel better but you aren’t anemic so you don’t need to worry.

So, now what do I do?  Ahhhhhhh!