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Thyroid To Doctor, It’s Time For A Gland To Gland

Post Published: 29 December 2009
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Category: Dear Thyroid Letters
This post currently has 11 responses. Leave a comment

Dear Thymon:

I swear, eventually you will get me kicked out of a doctor’s office. The “normals” with the medical degree don’t know any better, so kind of take it easy on them.   This GI doc seems promising.   I stress “seems”.   We’ll see what happens.

Thanks for coming to my rescue though, to pound my problems through his thick, male, normal skull.   I really think he was terrified of us.

Hee Hee.

I see your point, Thymon, after waiting over 6 months to see him, the first words out of his mouth were “Oh, are you here for a gastric bypass referral?”

As soon as you heard that, Thymon, you drew your little sword and ran to defend my honor.   As John was trying to find a parking place, he missed out on the beginning of the duel and came in late.   When he came in, it looked like you had started the fight.

I kept trying to tell Dr. Normal that the weight was due to you, but he really didn’t want to listen.   Finally, you drew your sword and held it to his throat. Unfortunately, no one else can see you and it comes out of me like this:

Me: Shut up and listen!,   I’m here for a reason.   I have severe stomach pain, I can’t eat and I’m losing weight.

Doc:,   We’ll address your weight issue in a little bit.

Me:,   F#(% you.!,   I have Hashimoto’s, pernicious anemia, severe Vitamin D deficiency, severe B12 deficiency, Rathke’s cleft cyst, and Adult Growth Hormone Deficiency.

Doc:,   I see…Where did you read this?

Me:,   What do you mean, where did I read this?

Doc:,   All of these things you mentioned are rare.   You couldn’t possibly have all of this wrong.

Me:,   Call my endo.   His records should be in your chart.

My husband came in the room after this and the doctor started to examine me and actually listened to my problems with my stomach.   A few minutes later, he called the nurse in and started to tell me his “plan” for making me well.

Doc:,   Ok, the first thing I want you to do is to see a nutritionist to be put on a liquid diet.   If that doesn’t work, we will think about gastric bypass.

Me:,   No f—ing way!,   Are you not listening? I said….

Doc (interrupting):  Are you going to listen to my plan?,   If not, then this appointment is over.

John (my husband):   Jackie, you promised me you’d behave.

Me:,   Ok, I’m listening

Doc:,   No, you’re angry.   We’ll continue at another time.

Me:,   Just TELL ME ALREADY!,   I’ll still be angry, but TALK, damn it!

I swear, Thymon, just like Zorro’s “Z” you slashed a “T” right on his throat.   Your sharp sword becomes my sharp tongue in the real world.

You got the doc to proceed with his plan.

Doc:   Ok.   Again, I want you to see the Nutritionist/Obesity specialist and go on a liquid diet.   We’ll see why your Vitamin B12 and D levels are low.

Me:   Ok. Listen.   I am taking growth hormone, B12 injections, synthroid, prescription Vitamin D (100,000IU) a week.   I really want to talk to my endo before I do this.

Doc:   Oh, I didn’t know you had other things wrong.   You never told me about the lack of intrinsic factor.   You’ll have to take the shots to get the B12.   Your body doesn’t metabolize it.

Me:   See, you WEREN’T listening.

Doc:   Well, I just assumed that since you were obese, you were just overeating junk food and stuff.   Ok, now I want you to go to the psychiatrist to deal with your emotional issues.   In the meantime, I want to schedule some scopes and the capsule endoscopy as you might have a twisted intestine and that is what may be causing your severe stomach pain, and not because you don’t know when to stop eating, like I originally thought.

Me:   Thank you.

Doc:   Although, since you have a thyroid condition, your digestion will be off due to your metabolism.   Once you get your thyroid in range your stomach may go back to normal.   Bye.   Call my nurse to schedule the testing.

Haven’t had any testing done.   But Thymon, just like in the ER, you got them to sit up and finally listen to me.   You are saving my life.

By the way, for all my fellow “Thyroidians” out there, I recently found out from my endo that due to the autoimmune aspect, a lot of people end up with lack of intrinsic factor.   This is an enzyme in your stomach that only depletes from gastric bypass or some autoimmune diseases.   Hashi’s is one of them.   Graves I believe, also.   Due to lack of intrinsic factor, your body cannot metabolize B12.   Your body needs the intrinsic factor for your body to use B12.   The only way for the B12 to get to stay in your system is by intramuscular injections of it.   I only take 1 shot a month and already my B12 levels are almost normal.   My fatigue has also improved.   So have my “crazy” spells.   My doc said that I was so deficient for so long, I was getting early stage B12 dementia.   It was also causing B12 urinary incontinence.   Please, please get your B12 levels checked.

Also, due to the Hashi’s, I found out that a lot of Hashi people have Vitamin D deficiency.   I got this off the Living with Hashimoto’s Disease Facebook page.   Everyone on there has Vitamin D deficiency.

Then I called my endo told him about it, and did some research with him to make sure I wasn’t getting wrong info.   There is a connection between thyroid problems and parathyroid problems.   They tend to run together.   Parathyroid problems can cause severe Vitamin D deficiency.

If you have parathyroid tumors, your Vitamin D will NOT go back to normal until the tumors are gone.

My endo will be testing my parathyroid levels next month and doing another thyroid ultrasound and possibly a biopsy.

You hear that, Thymon.   Just be nice and keep running to my rescue and maybe, just maybe, the endo will let you stay with me.   Otherwise, (making a slashing motion across my throat),   LOL!

Everyone have a fantastic holiday season and I’ll talk to you in January!

Love,

Jackie

(Bio) Hi.  My name is Jackie, and I am 40 years old.   My life ended as I knew it, the Spring I turned 30.   I didn’t know what was wrong with me.   Doctors insisted I was crazy.   I almost believed them.  Thank you, Dear Thyroid for your site.  I hope this letter I write will finally allow me to accept my condition…

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11 Responses to “Thyroid To Doctor, It’s Time For A Gland To Gland”

  1. Robyn says:

    Fantastic letter! And kudos to you for standing up for yourself to the doctor. I have Hashi’s and also was VitD defiecient–I need 4000IU/day to stay mid-range. I also recently learned about the B12, and let me tell you, MOST people (rather mammals) do not metabolize it well and IM shots are the way to go. It sounds like you have a good endo, too–keep up your end and best of health in 2010!

  2. amy says:

    Thank you for sharing, Jackie! Shouldn’t doctors listen to us first? Seriously! I also have Hashi’s but my Vit D is not bad. I take 5000/day. I have never has Vit B12 checked but I do supplement w/ B complex. Thanks for the letter, I have a feeling that felt good to get off your chest. Best wishes!

  3. HD inOregon says:

    I am really glad you stood up to your Doc. Hurray to You. They are no adonis’ in white smocks, they are there for you! You are their “customer”. – I fired my endo because he couldn’t/wouldn’t listen.

    May the New Year bring you understanding docs,
    health and happiness!
    HD in Oregon

  4. Jackie Kipilo says:

    It was funny.. My endo recommended the GI doc and sent all the records over in a timely manner, but he never read them.

    My endo wants to talk to me first before I go back to the GI doc. He said he would smack him.

  5. Jackie Kipilo says:

    Sorry…Happy New Year to everyone and may 2010 bring new treatments that work!

  6. markdavidson says:

    Is this a common experience for thyroid patients? What a horribly frustrating experience to have with one’s doctor. You shouldn’t have to fight with your doctor and the fact that you did, and it was the only way you were able to get a proper diagnosis and treatment, is deplorable. I’m so glad your post ends with successful treatment. I also think sharing your experience and providing detailed information that others can benefit from, is wonderful. Standing up to your doctor required courage and I find that inspiring.

  7. Anand says:

    Hi Jackie, as a doctor, increasingly frustrated with the way my profession of choice is turning out to be, I am really happy that you shared this.
    It is a great reminder that we tend to grossly over-estimate our insight into the patients problems, and impose our set ideas onto them

    I must say, though, that not all doctors behave this way, in fact most of the people i learnt the craft from believe and practice listening.

    all the best with the treatment.

    @robyn, from the evidence at hand, i would say we manage intricnsic factor well enough for most parts, not everyone needs shots.

    Anand

  8. Lolly says:

    Jackie,

    So glad you stood up to your doctor sometimes it needs a little bit of courage and alot of balls to say how you feel and let them know you are not happy either with your treatment or there diagnosis.

    A doctor no matter what field needs to listen first and foremost to there patients. I find writing symptoms down is a great help that way you leave nothing out.

    Great letter,jackie hope 2010 is going to be a better year for you.

    Anand I wish all doctors were like you, sad fact is they are not. After all they went to medical school and got the degree, what they fail to teach some not all is bedside manners and listening to there patients, if they could all be like you maybe we wouldn’t need to rant and rave about our treatment.

  9. Lori says:

    Bravo Jackie. I’m so proud of you. I am so sick and tired of being treated like I am not important or like I don’t know my own body by doctors. I’m paying them lots of money for their service. I feel like they should have to pay me back for such lousy/no service. I’ve gone broke over several years just trying to get diagnosed with Hashimoto’s and now have to fight to get treated properly. I also have vitamin D deficiency. My B12 was checked several times a few years ago because of idiopathic polyneuropathy (nerve pain in legs) but it was always normal. Maybe I should get it checked again.

    I do not convert T3 and still don’t get enough from NDT but I have to wait until April to see yet another endo who will probably not believe me. In the meantime I’ve lost another job because I can’t stay awake. My T3s are below normal, shouldn’t that be enough, and I’d bet my RT3 is high but who will order an RT3. It’s not fair and no one seems to care. I’ve always worked in the medical field and it’s a disgrace I am treated this way. I think I was giving my PCP too much credit. She has never prescribed Cytomel and won’t give it to me, but she had never prescribed NDT and she agreed to let me try that, and thank goodness she did or I swear I’d be in a coma by now.

    Thank you soooo much for sharing this. You give me courage to stand up for myself. I have actually attempted to stand up for myself but have been dismissed and treated like I was crazy for trying to get them to listen, and they walk out.

    It’s so discouraging. I wish I could take you with me. Maybe I’ll print this and bring you with me that way. I’ve learned a few things from your letter I never knew before. Happy 2010.

    (((HUGS)))
    Lori

  10. Zari says:

    An awful lot of people without thyroid problems also have vitamin D deficiencies especially in the winter, and it’s always a good thing to check on.

    Could you tell more about how the B12 intrinsic factor works? I’ve read about it being a factor in other problems.

    Personally whenever I have tests done I have them send me copies, which has been helpful. Also I get doctors reports on stuff and show them to other doctors when I think they might be helpful. Nothing like an official piece of paper to impress them.

    I hope all this works out. It sounds awful.

    Zari

  11. katie says:

    Robyn;

    Really great points and great advice. You know, I have Graves’ disease and my VitD is so low, it’s 6. Like you, I have to take thousands of units per day. It’s not going up, that’s another story, to be discussed another day.

    So glad you posted this!

    xo
    k

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