Morning nausea improved, blood tests are back, new plans

[carolm]

Hi all,
Last week I had lots of blood drawn to do a thyroid panel (among other tests) to see if there was another reason for my nausea, fatigue and lack of stamina. The good thing was that when my GP received the results, she reviewed them, made notes on them then sent them to me in time for me to take them to my GI visit yesterday.

Regarding the thyroid panel, the TSH and T4 were in the range. The T3 was 76 with a range of 76-181, so it was at the very lowest part of the range. My GI and discussed it and our conclusion was that it bears watching to see what the TSH does over a period of time. And obviously it can fluctuate. Thyroglobulin antibodies were less than 20 and that was within the acceptable range.
Surprising to both of us was that my B12 level was 469 (range 200- 1100). I think both my GP and I were leaning in that direction as being problematic. After I had blood drawn I started B12 supplements and I do feel better. Iron was also ok.

I had a mild decline in renal function with a creatinine score of 1.24. Last July is was .89. The range is .50--1.05. My GP thought was could be because of my restricted diet and the GI didn't disagree. I don't know what to think about it.

Good news- My triglycerides went from 289 last July to 152 and in fact my cholesterol in general looks pretty good. It's at the top of the range but I'm thinking if I can knock off a couple more points, my GP won't be on me to start Zocor again.

More good news- and this one does make me happy- my ANA (for lupus) was negative, my rheumatoid factor was 9 (reference was < 14) and my C-Reactive Protein was .18 (reference was <.80) so my immune system has not completely derailed, and hopefully I won't be battling another autoimmune disorder soon.

So the real question is how can I feel so rotten and my blood work look good? Well, my GI said she believes I do have something else going on, not colitis related. She wondered about inner ear inflammation and asked if I was having allergies and post-nasal drip, which I do. So I opted to start Sudafed to dry that up and see if it makes an impact with any motion related sickness. She also stated again that she wants me to be alert for low blood sugar and for diabetes. This is probably due to my symptoms of sudden weakness and nausea, my family history for diabetes, and (my guess) is that she's seen it develop in other patients because this is like the 3rd time she's mentioned it. I have a glucose monitor so I'm going to start carrying that and when that weakness and nausea hits, I'll check it.

The other thing she had me do over a week ago when I called her about my increasing nausea was to start Dexilant first thing in the morning. And it has helped significantly in reducing my morning nausea. I asked her yesterday what made her suspect excess acid or gastritis when I wasn't feeling any heartburn and she said there is such a thing as silent reflux which can be problematic. She also said even though I eat foods that I don't react to, eating the same thing repeatedly can sometimes be irritating to the stomach. She also reminded me that Benadryl can take the edge off of nausea--even 1/2 of a 25 mg tablet-- so if I'm driving and Zofran is not an option Benadryl can be. I have heard that before but had forgotten.

Lastly because I am C prominent we are starting a regimen of titrating up with very small doses of fiber to see if we can get Norman to show up every day and to see if we can interfere with the aggressive bowel episodes I get once every couple of weeks. She said it will take at least a month to see, but I'm happy that we are tackling this problem. I feel I am so close to effectively managing my LC, that if I could interfere with this pattern, I would be in really good shape. She said if we did not have an impact on my slow motility and the aggressive bowel pattern with the fiber regimen then she is thinking it is time to opt for tests that allow us to take a better look inside-- either another scope or the SmartPill. But that's down the road.

So that's the outcome and I really have no complaints. I would post the fiber regimen if anyone else who is C prominent wants to see it. I can assure you it is titrating in very small amounts.

I have to be impressed with how well our bodies work to maintain a balance in the face of so few calories, very little variety, and illness over the course of months.

Carol

[maestraz]

Hi Carol,
Sounds like you had very productive conversations with your docs.

Interestingly, my GP also raised the possibility of silent reflux at my annual physical, related to 3 very sudden- onset episodes of laryngitis in the past year. We didn't pursue it beyond that. The last episode occurred immediately after incredibly awful motion sickness (which I have never before experienced) while on the train to NY city. I literally lost my voice over the course of lunch with friends.

RE: B-12, My test prior to the physical had my numbers in the 480s and my GP is continuing the injections I've been getting since last fall-- weekly at first, now monthly. She wants to see my levels higher before I attempt sublingual B-12. She thinks it's an absorption problem, since I'm prone to D, not C, so supplements won't do much for me.

[Deb]

Carol, I have been having fatigue, stamina issues and am suspecting thyroid, though I just had about a month long flare of MC after two years so who knows? I thought I would mention, though, that DH and I both had issues with our triglycerides and both dropped significantly eating a low carb diet. Mine went from 150+ to 90 something pretty quickly.

[DebE13]

Carol,

I seem to have very similiar issues as you. What blood tests did you request? I have my annual P/P exam this Friday with my family Dr.'s nurse. I told the scheduler that I wanted my thyroid tested and was told to come to the appointment fasting. Hopefully the nurse will take me seriously about asking for the free T3 & free T4 test. Is that how I should ask for it? I don't really understand it but have been told here that is what should be tested. It's been almost a year since I hit rock bottom and my non-D issues are still ever-present. None of the medical team took me seriously since I had refused steroids for over 3 years. Now that my D is improved (not where I'd like it) I want to address the same issues and I've also seen an opthomologist and rhuematolgist and passed with flying colors . All of my previous blood tests have come back in the normal range many times so I have the impression that the docs actually think I like visiting them. Hopefully, they will do the tests just to satisfy me (or prove me wrong) but my life still is limiting because I only have enough energy to make it through the day at work because I have to- making dinner is a chore and then I'm spent for the night and do absolutely nothing. It's very depressing especially this time of year when it's so nice to be outside. I've thought of tearing out all of my gardens and planting grass because it's all becoming too much for me and gardening is what I do.

I have persistant nausea, worse in the mornings. I usually tell my husband that I just feel "pukey" all the time. It had improved and thought it was due to the elimination of foods: GF/DF/SF/EF but now it has returned and there isn't much more I can eliminate. I have severe fatigue and stamina issues. My eyes always hurt and burn terribly and my eyesight has seemed to become worse (I've used the dry eye drops and it feels good but doesn't help). I have seasonal allergy issues unlike I've ever had before- I use benadryl, nasal crom, and allegra and seems to help some. I just plain and simple feel like my ass is dragging all the time and even sleep doesn't help, although that's what I do the best.

I don't mean to sound so pathetic but I'm determined to figure this out but don't know how to approach the doctors for the right tests since they've just written me off as a nut. I am disappointed that after 6 months I don't feel better. The D has made improvements but my overall sense of well being is lost somewhere so there has to be more going on.

Any suggestions would be appreciated.

[carolm]

Hi Ladies. thank you for your responses.

DebE13-- I am convinced now that I must have some kind of gastritis or stomach irritation because this is the second time she's had me start the Dexilant and it's helped the nausea both times. The earlier time I agreed readily because I could feel acid and heartburn increasing. But this time really caught me off guard. So I take Dexilant, even though we and my GI know that a PPI can have it's drawbacks too. Since Dexilant lasts 24 hours after a couple of days I can tell the difference and the last 3 days I have not been waking up nauseated nor have I needed a Zofran or Bonine (otc meclizine). I was considering taking a Dexilant and one Benadryl first thing in the morning and I still may try that. Nausea is a tricky thing because sometime I feel I'm nauseous because I haven't eaten much, but then nausea makes it nearly impossible to eat, so it's hard to get out of that cycle. I know there are times when I am not getting many calories, but I just do the best I can for the day.

As far as what tests to ask for, I asked for the full thyroid panel and I did ask for free T3 and T4, and my Dr said those would be in a full panel. I told her I specifically wanted to rule out Graves disease and she jumped on board with that because obviously if your immune system can attack you GI system, it can certainly attack your thyroid. I also took in this research article "Microscopic colitis: a large retrospective analysis from a health maintenance organization - NCBI" www.ncbi.nlm.nih.gov/pubmed/19575491 because there is a table in this article that shows the prevalence of thyroid, diabetes, and other conditions that are higher in the LC and CC population compared to the general population. It's a well done piece of research and you can scan the tables easily and see the prevalence. My doctor liked that.

I hope I've answered your questions but if I haven't let me know.

When you read the symptoms of B12 deficiency, it is exactly what you and I are experiencing and my GP was clear she wanted that checked. If you've been to a rheumatologist you probably have already had the ANA titer, but I am very glad to have that information. I feel less worried about where my health is headed.

I know exactly what you mean about stamina being gone. Even on days when I feel good I can start in working on a project at home (painting a room or planting flowers) and I just run out of energy quickly. It's discouraging. I've come to the realization that I am at a point where resting more is not the answer. Laying around will not increase my stamina, so I know I have to start an exercise routine--even when I don't feel like it. I think that's what it will take.

Carol

[carolm]

DebE13,
I should probably add that I did my best to be descriptive, even graphic, in what I am experiencing. I told the Dr of times I was at work and trying to explain to a committee at the alternative school about a student's psychological status-- and I was so queasy and dizzy that I was gripping the arms of chair to keep myself oriented. I described how I was dry heaving while driving, that the nausea and weakness can hit suddenly and I feel drained, that I dropped 4 pounds in 10 days without changing my diet or exercising, that I feel I am made of lead, and that although I feel my gut and LC are doing relatively well, I am concerned I have something else going on that is muddy-ing the waters-- why else would I have these symptoms. It was the sudden weightloss that got us thinking about thyroid. Real life examples of how you couldn't follow through on things you wanted to do or had to stop a normal daily activity due to nausea or poor stamina seem to be the most powerful in getting my GP to understand the depth of this issue early on. When in my first big flare I said to her "remember the last stomach and intestinal virus you had. Remember it? I feel like that EVERY DAY". That made an impression-- it was a good starting place.

Carol

[CathyMe.]

DebE13,
I should probably add that I did my best to be descriptive, even graphic, in what I am experiencing. I told the Dr of times I was at work and trying to explain to a committee at the alternative school about a student's psychological status-- and I was so queasy and dizzy that I was gripping the arms of chair to keep myself oriented. I described how I was dry heaving while driving, that the nausea and weakness can hit suddenly and I feel drained, that I dropped 4 pounds in 10 days without changing my diet or exercising, that I feel I am made of lead, and that although I feel my gut and LC are doing relatively well, I am concerned I have something else going on that is muddy-ing the waters-- why else would I have these symptoms. It was the sudden weightloss that got us thinking about thyroid. Real life examples of how you couldn't follow through on things you wanted to do or had to stop a normal daily activity due to nausea or poor stamina seem to be the most powerful in getting my GP to understand the depth of this issue early on. When in my first big flare I said to her "remember the last stomach and intestinal virus you had. Remember it? I feel like that EVERY DAY". That made an impression-- it was a good starting place.

Carol

Hi Carol,
Are you a School Psychologist? Small world as I am one as well, been working @ the same public school for 18 years. DebE, I too had similar symptoms and want you to know there is hope! I would not want to get out of bed in the morning, felt like I had weights on my arms and legs and would be exhausted by 7pm and I was used to being a very active 43 year old. I pushed for more blood work and encourage you to as well...we know our bodies best, and found that my pituitary is not working properly. I started BC pills 10 days ago and while I'm not 100%, I have been having more good days then bad as far as feeling good. My advice is to write down your symptoms and go over each one and don't let them put you off!!

[carolm]

Cathy, I am a school psych and the Autism Intervention Team Coordinator for a special ed cooperative that covers 4 school districts. I've done that for 18 years. I started my career as a clinical psych and did that for 14 years. I enjoy school psych and definitely like the team approach.

I'm glad you spoke up. It's always fun to meet other school psychs.

Carol

[DebE13]

Thanks Carol and Cathy for the good advice. Hopefully I'll start finding more answers after my visit.

[carolm]

DebE13--- Keep us posted on how it goes.

Carol

[DebE13]

Thanks- I will.

[CathyMe.]

Cathy, I am a school psych and the Autism Intervention Team Coordinator for a special ed cooperative that covers 4 school districts. I've done that for 18 years. I started my career as a clinical psych and did that for 14 years. I enjoy school psych and definitely like the team approach.

I'm glad you spoke up. It's always fun to meet other school psychs.

Carol

That's great Carol. I too have an interest in Autism/Asperger's, etc. and 3 years ago went to train on the ADOS in NYC. I use this tool quite a bit. Do you utilize this in your area? It's nice to meet you too!!

Deb-let us know how things go on your visit!

[carolm]

Cathy- yes we do ADOS. We were trained by the Autism Team from KU Med Center, in Kansas City, also affiliated with the University of Kansas in Lawrence, which is about 30 miles from KC. They come to my town once a year to do outreach screenings and consult on tough cases but my team does the rest. Of course the eventual goal is for us to do all screenings and evaluations, then use Telemed for consultations. but we are not telling the KU team to go away, by any means. We save the tough cases for them-- kids who have more issues that just ASD. We've had this in place for the 5 years I've been the coordinator. It works well. The KU team is awesome, so easy to work with.

I have 9 years of Applied Behavior Analysis training and practice from my years working at Parsons State Hosp and Training Center--lots of early research came out of Parsons-like joint action routines, and other educational strategies, etc. When I consult the first thing I do is look at sensory integration issues and communication concerns. To address these two things first eliminates a lot of behavior problems. After that then we see what ecological data tells us and we go from there.

My team is made up of a big variety of staff-- OT, PT, Speech clinicians, Psychs, Special ed teachers, a few general ed teachers, a counselor, and our Assistive Tech person. I just pull staff as needed for consults, depending on the needs of the student and the referring teams request. My goal is to establish "in-house' teams in all our buildings and to put myself out of business. We have in-house teams in about 1/3 of our schools and my referrals have dropped significantly.

How does your Autism team operate? It's always good to see how others are handling the challenges.

Carol

[CathyMe.]

Cathy- yes we do ADOS. We were trained by the Autism Team from KU Med Center, in Kansas City, also affiliated with the University of Kansas in Lawrence, which is about 30 miles from KC. They come to my town once a year to do outreach screenings and consult on tough cases but my team does the rest. Of course the eventual goal is for us to do all screenings and evaluations, then use Telemed for consultations. but we are not telling the KU team to go away, by any means. We save the tough cases for them-- kids who have more issues that just ASD. We've had this in place for the 5 years I've been the coordinator. It works well. The KU team is awesome, so easy to work with.

I have 9 years of Applied Behavior Analysis training and practice from my years working at Parsons State Hosp and Training Center--lots of early research came out of Parsons-like joint action routines, and other educational strategies, etc. When I consult the first thing I do is look at sensory integration issues and communication concerns. To address these two things first eliminates a lot of behavior problems. After that then we see what ecological data tells us and we go from there.

My team is made up of a big variety of staff-- OT, PT, Speech clinicians, Psychs, Special ed teachers, a few general ed teachers, a counselor, and our Assistive Tech person. I just pull staff as needed for consults, depending on the needs of the student and the referring teams request. My goal is to establish "in-house' teams in all our buildings and to put myself out of business. We have in-house teams in about 1/3 of our schools and my referrals have dropped significantly.

How does your Autism team operate? It's always good to see how others are handling the challenges.

Carol

I too have ABA in my background and graduated from a very behavioral based program in school psych. I also am a firm believer in using strategies from both SL and OT folks and the benefit their knowledge brings to the table when working with these kids. We are trying to do more RTI with all of our new referrals as our state is behind the curve of the nation..we are supposed to have it implemented by July of this year but don't see that happening. However,in cases of suspected ASD, I am always involved on some level, most often I will do informal observations, talk with the playground supervisor, lunch people, etc. and then bring in whomever else I think would be helpful. We don't always necessarily do a full evaluation but will meet informally, put into place some strategies and then see what works/doesn't work and meet again. My district is pretty small (2500 kids total) and there are 3 School Psych. people. You sound like you have a much larger district?
On another note, do you ever go to the NASP conference? I went to San Francisco a year ago and am going to plan on going to Seattle next Feb. Let me know if you do go and we can possibly meet up?

[carolm]

HI Cathy, I think we are all getting smarter about how to approach the challenges of autism and not seeing everything as 'behavior' even when it looks like behavior. RTI is hard to implement consistently across the board. In my own schools we have pockets of RTI that could serve as good role models and then we'll have other times that it just doesn't happen. Our district has approximately 3500 kids in our schools plus we also have a strong Catholic school system here, And our cooperative covers 3 other outlying smaller districts all within 20 miles of Hays, so we do serve a few more. We have 8 psychs but 2 of them are part-time (working 50%) and our early childhood program requires a full time psych to themselves. We are spread a little thinner than we used to be but I'm sure that has happened everywhere.

I would love to go to NASP but budgets are such that I'd have to pay for the entire trip out of my own pocket, so I doubt that I 'll be going this year. Thanks for asking though. It would have been great to get together.

Take care and keep in touch,
Carol