Sunday, April 18, 2010

Endocrinologist Agenda:Looking for a Hero

The Goal

I am concerned that there are multiple hormonal things going on and important details are getting missed. My goal is coordinated care where someone is pulling all the disparate threads together.

Right now there are multiple doctors doing different things and nothing is coordinated. Everyone is dealing with the parts and not the sum.

I would like some help in figuring out the right treatment regimen for me. I want to be sure we're not missing something important.


The History

1. 1988-1999 Asthma diagnosed at 15. On prednisone more than off along with multiple ER visits until the late 90s when modern asthma meds finally gave me some control.

2.Regular menstrual cycles and normal weight loss with low fat, low calorie, high carb, high exercise regimen in late teens/early 20s. Maintained for 5 years until...

3. 1991-2000 Asthma and Cushings related to prednisone use in the 90s (in my 20s). Had Cushings twice within this time period. (Copy of lab work to be provided.)

4.Inability to lose weight doing what I had done before, which was treated medically with 'Go to Overeaters Anonymous' when that was not my problem. Always on a diet, always exercising, never losing weight but I was a very fit fat chick. I even taught aerobics.

5.2002, tried to conceive and found out I had PCOS and a luteal phase defect. No family history of Diabetes or PCOS.

6.2002 Given Metformin and Fortamet for the PCOS on 3 separate occasions, discontinued each time due to muscle pain and cramps. No GI upset, just muscle pain and cramps.

7.2006 Worked with an endocrinologist on a PSMF and lost 60lbs. Unfortunately, I still didn't ovulate, I still had dyslipidemia. All the same health problems, just prettier packaging.

8.Jan 2007 Got pregnant via IVF. Never responded to injectible cycles, but did have OHSS with IVF--twice.

9.Had an uncomplicated pregnancy but was on prednisone in 2nd trimester for asthma flare and was told not to low carb because it wasn't 'safe.' So I didn't and gained about 35 lbs.

10.Gained even more weight with the 1.5+ year of severe sleep deprivation as a new parent.

11.2008 Developed a (determined to be benign) sinus heart arrhythmia and racing heart. This improved somewhat in 2010 when Advair was replaced with Symbicort, but I do still experience an oddly (to me) racing heart beat.

12.2009 Hypertension diagnosis but no meds until 2010—Pending question of hormonal influence. 2010 Low-dose dexamethasone suppression test ordered, but due to an asthma exacerbation in March, could not complete because of prednisone. My BP dropped on the prednisone. I had to discontinue all BP meds. Weight loss of 25 lbs did not effect BP. Actually gained 8lbs of fluid with prednisone and had low BP.

BP required 2 meds and control still was not achieved; we were waiting and seeing if additional weight loss would help or not, but then I got sick.

13. 2010 Enlarged thyroid with nodules too small to biopsy and thryoid levels are normal. (Copy of lab work to be provided.) Advised it was Hashimotos but no antibodies test was done. My maternal aunt has Hashimotos. My maternal grandmother had hypothyroidism.

14.Currently on an alternate day taper of prednisone 10mg every other day. Should finish this week. Concerned about Cushings developing again.

15. 2010 a CT scan found a small lung nodule in right lower lobe. Due for second CT scan in December.

16.Found a lump that may need to be assessed further.

Questions

1.Is it possible to test for the antibodies to find out if I am developing Hashimotos' or not?

2.Should I supplement with iodine? I realized that I don't actually get much in my diet. How much should I supplement?

3.Is it possible that the thyroid is enlarged due to low carb eating? I have read that long term low carb can affect the thyroid.

4.What about prednisone = normal blood pressure and discontinuing BP meds?

5.Should we test my adrenals to be sure they are coming back online after this latest round? I'm concerned about Cushings again.

6.Should we try Metformin again? But how do we ensure it's safe? Is there a way to test and find out if the muscle pain is a serious side effect or not?

The pain is significant enough I don’t know if I could handle it even if the muscle side effects aren’t dangerous. So perhaps it's moot.

7.What can be done to address the insulin resistance? The supplements I use have been studied and shown to help, but I have no idea if they are helping me or to what degree. I am kind of making things up on my own and shooting in the dark, which is not ideal.

8. I think it might be a good idea to do a glucose challenge--I've had some wonky hypo like episodes that have me concerned. My insulin is high and I've recently been made aware that anyone with a fasting blood sugar over 90 tends to develop Type II within 5 years (or was it 10??) and I'm a candidate for that. My fasting blood sugars have been over 90 since 2002.

9.Switch weight management clinic to your system?

10.What do you think the next step should be?

2 comments:

  1. Hi, First time I stumbled upon your blog, picked it up from chronicbabe.com.

    As far as the Hasimotos, my endo test me every few years because my sister has it. Your doctor won't test you is that the problem?

    I have secondary Addison's disease due to hypopituitary, so I can't say I blame you about your concern with your adrenals. If it were me I would certainly insist on being tested. Long term steroid use can make you go either way - Cushings/Addisons.

    You sound like you have a lot of problems, I feel bad for you.

    Maureen (mo)

    ReplyDelete
  2. Maureen:

    Thanks for the comment. :)

    My issue with the Hashimotos is, why not test for the antibodies and find out for sure? The previous endo said he 'can't test for antibodies' which I don't think is true from what I have read. I want to know for a few different reasons...

    A. There are studies that may change how Hashimotos is treated where they give thyroid meds before the thyroid is destroyed which helps preserve it, so having a diagnosis will be good if that kind of treatment becomes standard practice and...

    B. It gives me more time to learn and prepare for what is coming if I do have Hashimotos.


    C.If it's not Hasimotos then we know to look more at iodine deficiency or the effects of a low carb diet.

    At least that is how I am thinking.

    M

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/