At the Endocrinologist’s: Confusion Reigns

Before you read this post you may want to read The Walking Dead in which I describe my first trip to the endocrinologist.  I am so confused I find this a very difficult post to write!

Earlier this week I had my follow-up appointment to my first visit to the endocrinologist.  I had been praying for a diagnosis of some sort because my symptoms in the last few months have become so severe; excessive weight gain, so tired to the point where I have fallen asleep while eating with my family, severely nauseous and more.

I had to wait for more than an hour and a half.  I had come early because I was trying to run an errand before that and I became so nauseous that I decided to just go to the doctor’s office because I could no longer drive. When they first called me, the nurse brought me in to an office and handed me my test results and then said to go back out to the waiting room, the doctor would be with me in a few minutes.  I looked at my lab tests and was horrified because there were many abnormal results including that I had a nodule on my thyroid.  I have never been to a doctor where they give you your lab tests with no explanation!  I sat in the waiting room trying not to cry.  I talked to the woman next to me and started laughing it up because if I didn’t make jokes I would have totally lost it!

Finally it was my turn.  Here is something you never want to hear a doctor say: I don’t understand these results, you are confusing me!

I did appreciate her honesty though.  I have had too many doctors who think they are God, who either don’t believe you at all or try to guess at what is wrong with you.

First of all, she said that yes, I had a nodule but that it was too small to be causing any of my symptoms and we were just going to put a watch on it.

My fasting blood sugar was high.  Just 106 ( a normal range should be up to 99) but because I had gestational diabetes and my symptoms of weight gain, fatigue, and nausea were so severe, she wanted me to see a dietician to start the diabetic diet.  I was in disbelief, although diabetes runs on both sides of my family and I knew I would be getting diabetes sooner or later due to the G.D…I guess no one wants to hear that news.

Diabetes is just one of those diseases that if I had my say, I would pick another.  To me, it is so invasive, life changing.  “But Halloween is coming up, and the holidays!”  “If you keep eating like you are, you are just going to get bigger and bigger.  You are going to bloat up, sweat and just keep getting sicker.”  (Yes, but why did this have to happen during the holiday season??)

My cortisol level was mind blowingly low.  A ’5′; the scale begins at 6.2.  And here is where it confused her the most.  Low cortisol levels, although they account for my horrendous tiredness, are the opposite of the rest of my symptoms.  Symptoms of low cortisol include blood sugar yes, but LOW blood sugar not high, weight issues yes, but weight LOSS, not gain!

I started to cry.  “I don’t understand, what then is making me so sick, why am I so sick?” “Well, what bothers you the most?”  “I guess the weight gain, it is just so out of control.” “So let’s get you to the dietician first.”  She wrote up a prescription to repeat the cortisol level and some other tests.  She walked me out with her arm around me.  “Don’t worry, we’re going to fix you up.”  She is the sweetest, I must say!  I have to see her November 10th.

I already have cut out the sugars on my own and have lost a couple of pounds and feel a bit better.  So I guess she has something there, ha, ha.

It’s just…Why did this have to happen during the holidays???

No candy for you!

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About mamasick

Emily Cullen is a pen-name. I suffer from chronic illnesses and diseases which include Asthma, Diabetes and Fibromyalgia. I had battled Lupus and Rheumatoid Arthritis but there is no longer evidence of me having these diseases and my Rheumatologist has declared them to be "burnt out" of my system. I am separated from my husband, “Grant”. Our son, “Tyler” was born in September of 2006 and suffers from tics and Obsessive Compulsive Disorder, and is delayed in fine and gross motor skills. In my blog I seek to let sick moms know that they are not the only ones going through this, and to educate people about what can happens when one becomes catastrophically ill. I also strive to break down stereotypes of what a “Welfare Mom” is like. Anything that I have gone through due to being sick, is written on the pages of Mama Sick.
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13 Responses to At the Endocrinologist’s: Confusion Reigns

  1. Shannon says:

    Bah! Don’t you worry about the weight thing too much. I am with you on the same page with that regard. I too have gained an alarming amount of weight recently. But for me the pain was more important to deal with. Now that it seems a bit better… perhaps it is time to tackle the weight too.

    I too have cut out sugar, caffiene and totally eliminated soda pop consumption in the house altogether lol. Stevia is an excellent sugar replacement – a natural one. I have 1 coffee a day, if that. It’s not been hard to do at all.

    Let me tell you something though. If I had family locally and/or young children, this is NOT the time of year I’d be concerning myself with weight loss. I haven’t seen my family since my mom passed in 2008 and before that it was 2003. We live too far away to make seeing them possible due to finances. If I could, I’d be spending time having as much fun as possible with my family and friends over the holidays – that’s what they are for right (friends, family and holidays)? To enjoy. So ENJOY!
    Shannon´s last blog post ..Relaxation for Fibromites #1

  2. I remember being told about the diabetes back at the beginning of the year. It was devastating!! Loooooooong story short, because I totally feel the SAME way, and am STILL not following the diet I’m supposed to be…I have found some ways to help me out….

    Get a kids diabetic cookbook. Seriously. None of the fancy schmancy stuff you’ve never heard of…and truly…my own kids are loving the recipes! I’ve yet to actually look for one with the sweets recipes, but with the holidays coming up, I’m certainly on a mission to find one.

    I also just wanted you to know you’re not alone with those feelings. How many months later, and several concurrent diagnoses later…I’m still struggling. xoxoxo
    Brynn Clark (@SpoonieVille)´s last blog post ..Healing Through Art: Domestic Goddess

  3. Grace says:

    “Here is something you never want to hear a doctor say: I don’t understand these results, you are confusing me!”

    And yet, only a doctor with confidence and professionalism would ever say that. Like you, I prefer the honesty.

    I’m sorry about the diabetes. Come to Britain for a few weeks. We don’t eat candy for Halloween here…
    Grace´s last blog post ..Iron-rich recipes #4: Lentil burgers

  4. mamasick says:

    Thanks, Brynn.

    One of the biggest problems I am going to have is that I am too disabled to cook. If I make three dinners a week it’s a good one! We are always ordering in, eating the left overs from ordering in, or eating a frozen pizza. I didn’t write that in my post but I don’t think the doctor really understood my dilemma. I am just in too much pain, too nauseated, headachy, can’t stand, too exhausted, etc. to cook normal, healthy meals. Right now I am doing the best that I can, this is going to be some challenge.

    Thanks for the suggestions and letting me know you felt the same way about it when it happened to you.

  5. mamasick says:

    Hi Shannon,

    My weight, or weight gain has always been a depression trigger for me, so I am very unhappy. One of the benefits of having Lupus was that at least I was skinny! But overall it is not about esthetics, eating like this is making me feel like crap, and I am noticing an improvement just cutting out the sugar. I have to learn not to associate eating with good times and concentrate more on my family, but it is easier said then done.

  6. Clarington says:

    Hey sweetie,
    Normally right now I’m looking at BYDLS but since the forum is down I’m trying to remember the links to members blogs / pages to try and check up on everyone. What a test for the brain!!

    The diabetes thing, yes it sucks. My mother was hit with it earlier this year (the reason why I did the 22 mile sponsored swim) and since she’s been following the diet she has lost over two stone and is heading for her third. She looks amazing!

    Be sure to tell the dietitian that you don’t cook, can’t cook, so that they can focus that (and changing any snacking habits you might have) and adapt plans to be a bit more cripple friendly rather than singing on their normal sheet. Mothers diet is a real no brainer and is healthy rather than strictly sugar free but unfortunately since you aren’t cut out for bashing pots and pans around I can’t share the tips she’s been taught. Shame though – some of those meals are AMAZINGLY yummy!

    Good luck.

  7. mamasick says:

    Hi Clara,

    Your advice on what to tell the dietician makes good sense. Healthy people don’t seem to be able to quite grasp the situation of when I say I can’t cook, I really mean it!

    When I had gestational diabetes I did cook some great recipes; turkey meat balls with rice, pasta with tons of veggies. But of course, I was not as sick as I am now, nowhere near it, or I wouldn’t have had my son in the first place. I was a healthy pregnant woman who had one flare of RA from walking Tyler back and forth too much when he would cry. October of 2007 I started feeling much worse, and he was one then. I lost my job in March of 2008 and then in July I got my Lupus diagnosis.

  8. POP says:

    Please look into the low cortisol. I corresponded with a patient who had Addison’s yet gained weight even thought that’s not supposed to be ‘possible’.

    If you go to my blog and click post a comment, the message that pops up will give you two message boards full of experienced adrenal patients. Go talk to them. Low cortisol can be very dangerous.

    And I would not be surprised if either you have diabetes plus low cortisol–other conditions can change test reults– or if your body is trying to compensate for the low blood sugar by over producing.

    M
    POP´s last blog post ..Fast 10

  9. SnipeWife says:

    I found you through Mama Kat’s and I’m just reading through your blog. My heart just aches for you and applauds your strength and openness. I too am the chronically ill one and have recently been struggling with mystery symptoms which have resulted in a diagnosis of psoriatic arthritis. But I am also the one with other issues, anxiety and panic attacks in particular. That didn’t help the frustration I felt when all my tests would come back “normal” until the final ones and the evidence of so much fluid on my knees. Again, thank you for sharing your story in your blog. I intend to visit often.
    SnipeWife´s last blog post ..G.I.G.O.

  10. Weight gain with adrenal insufficiency is way more common than they say. I’m a living example. :-P However, I’d be suspicious that your thyroid probably isn’t okay, even if they tell you it is. Even otherwise very competent endocrinologists often can’t diagnose thyroid issues. And huge weight gain really points to hypothyroidism.

    And true, it’s possible you can have both diabetes and adrenal insufficiency at the same time. Adrenal insufficiency can be even more dangerous of the two. Adrenal insufficiency, thyroid problems and type I diabetes (or any two of these) often coexist. Sure, if your symptoms and lab tests point to diabetes, it’s more likely to be type II – but it’s possible to get type I as an adult and many people get misdiagnosed, because the type II is seen as so “obvious”.

    Adrenal insufficiency is kind of bad news, because it really sucks (at least for me, it seems to suck a lot less for many others). But if the results are right, it also means you could feel much, much better just by taking hydrocortisone.

  11. mamasick says:

    I really appreciate you writing, Maija. I feel like it is people like you who are more educated than the doctors because they live it! My endo is sending me for a retest, my rheum. is sending me for a retest! I just feel so sick, a fasting blood sugar of 106 just can’t be making me this sick you know? I see my endo November 10th, and this time with readers of my blog like you helping me and my own research, I will be a whole lot more educated. I am not afraid to see another endo if I don’t like this one.

  12. Melissa says:

    You could still have Hashimoto’s – did they test for thyroid antibodies? My TSH and T4 were in the normal range (and that’s all the normal docs tested). Once I started seeing my fibro doc, he tested my T3 levels and they were abysmally low and my antibody levels were through the roof. I have Hashimoto’s and was really skinny – I couldn’t gain weight! But that was due to the combination of adrenal insufficiency and Hashimoto’s and IBS. Once I started on supplemental cortisol and T3, I was a healthy weight for the first time in 10 years. I would totally recommend my fibro doc to you (he’s in King of Prussia, so not close but not too far from you), but he doesn’t take insurance, so I don’t think you’d be able to afford him. We barely can sometimes!
    Melissa´s last blog post ..melitami: @obsidianspider yeah, I don’t really use the share function either, I just tweet or FB links to articles I find interesting (rarely).

  13. Queenie says:

    It’s commonly what most physicians tend to do or act. What else we can expect from them who’d spend much of their time studying and specializing things and most people asked help from them concerning their health. They almost see their self as individual next to God. It’s really irritating but it’s what reality is composed of, annoying and power-abusing people.
    Queenie´s last blog post ..hair loss in women thyroid

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