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I’m Ready To Throw In The Towel

Post Published: 14 April 2010
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Category: Dear Thyroid Letters
This post currently has 23 responses. Leave a comment

(Written by, Nancy: Thyroid related Depression/Weight gain)

Dear Thyroid,

Not only is my Synthroid on the wrong dose, I have been upped to 125, to no avail. I have gained 15 pounds, my skin is like sandpaper, and I have become super depressed. It feels like there is no reason to go on. I am serious. I am exhausted and depressed five weeks into this new dose, and nothing. No real sign that this is the dose for me.

I am over doctors, and I quit my whole-grain diet, it damn near made me sicker too, just disgusted. I will be 52 at the end of this month, and I really feel like 80, breathless, exhausted, and no reason to live. My memory is fading, and this is not living at life’s potential. So my Synthroid went to 125. This feels bad, I give up. Between that and gluten being a problem for me (which, I might add, I figured out all by myself). Went back to a normal diet, but there is just no hope.

Sorry, but if the doctors can’t get it right, I can’t either. I’m disgusted, feel like I am 80 going on 100. Depressed intensely. Please respond, because I am done feeling this way.

Nancy Debusk


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23 Responses to “I’m Ready To Throw In The Towel”

  1. Tracy says:

    Have you looked into you adrenal function? I have read that if your adrenals are sluggish then the medication won’t work.
    http://www.canaryclub.org/diurnal-cortisol-4x-zrt.html(the saliva test is the only accurate test)

    I have researched so much and treating the thyroid is so much more than throwing you on Synthroid. Have you had your iron levels (ferratin) checked? Have you had your Vitamin D, B and B12 checked? Have they checked your free T3 and T4? I would start there and check out the Stop the Thyroid Maddness website. Its worth it to find out how to really help yourself when your feeling this low. Hoping you can get this sorted out soon.

  2. Linda B Reed says:

    Nancy,
    I can’t tell you how many times I have felt this way! Just know that you are not alone and that your fellow thyfriends are here for you. HUGS!!! 🙂

  3. Heather says:

    Nancy, I don’t know where you are located, but try to find a different doctor NOW!! It sounds as if synthroid is not the answer for you. How often are they checking your labs? I was depressed to the point where I was considering suicide… I read “The Mood Cure” by Julia Ross and it changed my world. I ran it by my nurse practitioner & started to change my life!! After I added the supplements she suggested in the book, I have not had the same feelings of worthlessness and hopelessness. My husband and I used to fight constantly, and since I started the supplements (I take St. John’s Wort, L-Tyrosine, 5-HTP, and GABA) I can count on one hand the number of disagreements we have had. It has been a slow process, but I finally see myself, the me before Hashi’s, again!
    I have cut out gluten and have lost 20 lbs since August. It’s slow, but it’s moving! I would suggest reading Mary Shoman’s “The Thyroid Diet,” it has some great ideas on how we can lose weight.
    I wish you the very best!
    Heather

  4. Becky says:

    Hi Nancy,
    Let me start off by saying, I know how you feel. I was diagnosed with cancer in ’04, they removed one side of my thyroid and put me on synthroid. I gained a total of 60 pounds and was severly depressed. I had to switch doctors twice before I found one that would look at my symptoms and not just my lab results. Hang in there girl, it is a tough road…but it will get better. Remember that it takes a full 3 months for your body to adjust to a new dosage. I am now on 137 mcg and I have lost 30 pounds, but it took about 4 years to get there. Please don’t give up, keep researching and find what is best for Nancy…this is not a cookie-cutter illness, not everyone is the same.
    Good luck,
    Becky

  5. Sarah G says:

    Nancy: I am so sorry. I hope that you will reach a point of equilibrium where you don’t feel as horrible as you do now.

    The depressed mood and the tendency to gain weight can continue even after you are on a level of Synthroid that keeps the TSH down and gets you (semi) functional again. Doctors know a lot more about the thyroid than they used to, but nothing beats the original equipment (as my grandmother used to say). I think there are a zillion “little” things the thyroid affects that we are still learning about.

    Keep working with your doctor (or endocrinologist) to find the best treatment possible, but you will have to work out some of the balancing on your own. You’re figuring out how gluten affects you/your weight, which is good. I hear soy gives some thyroid patients trouble, too. My spouse is trying eleuthero (aka Siberian ginseng), which she believes is helping a little with her energy.

  6. Linda says:

    Nancy, I know exactly how you feel. I am right there now too. I get so sick of watching everything I do. Take this, eat that, don’t use this, don’t eat that. Sometimes I feel like nobody knows what really would make me feel better. Information overload and if it is so important why aren’t there people working on fixing it. Lord knows I am too foged and tiard to do it. Just trying to avoid soy and floride is a full time job. I know this isn’t any “words of wisdom” or “try this” help.
    All I know is sometimes you have to give up before you can regroup and try again. Just know there are others out there that feel the same, and we understand. I have blood work this Sat. Once I find out what they say I am going to regroup and try again. Please try and do the same.

  7. Nancy, you deserve a doctor who listens to you. You deserve to feel well. You deserve to be comfortable in your own body. We are here for you. To fight with you. To cry with you. To find reasons to laugh with you. To walk this road with you. Because YOU ARE WORTH IT!

    xo,
    Joanna

  8. Erica says:

    Nancy,
    This letter could totally be written by me. I know that isn’t helpful but you definately are not alone. I try to find the little things to get out of bed for. A lot of days its just to read the letter on Dear Thyroid and see if I can connect with someone for the day. (((((HUGS)))) here’s hoping things start looking up.

  9. Cate says:

    Nancy,

    I understand giving up on doctors, believe me. My quest for the right diagnosis and treatment has been ongoing for 15 years. Don’t give up on you! Do whatever it takes to make yourself feel better today, without self criticism. I know this is difficult. Trust your instincts. I just started Raw Thyroid and am having interesting results. In a couple weeks it cleared up a horrible, chronic rash I’d had for a decade.

    Cate

  10. Cat says:

    Nancy! Don’t give up! It took me TEN YEARS to get the dose right! My synthroid is all the way up to 163(odd yes since I’m a very petite person for such a high dose but that was the right one). You’re not alone!!!xoxoxo

  11. lori says:

    Nancy, many of us have been where you are and you can get better. You have to hang in there and fight for what you deserve. We are here to support and help you do that. I have felt the same way. I never thought I would survive it at times but I did and you can too. I turned 50 last December and I am determined to not let an ignorant doctor keep me from healing and have a better life. There are good docs out there. You have to keep looking. I heard these same words from the thyamily here but worried I would ever find one. I thought I’d never be that lucky but I have one now. Sometimes when we go in armed with information and ask for specific tests they listen. I started with my primary care and she saw I was not doing well on T4 drugs and started ordering more test, but she never would have done it on her own without me asking. I then found a hormone doc that could help me more. At the end of this post, I am going to copy and paste my adrenal gland story, which I had just posted on Dear Thyroid on Facebook.

    I think Tracy’s recommendation on blood tests are very good and these are a must to know how your thyroid is functioning, as well as other problems that often accompany thyroid disease. I would add another blood test to that list – “DHEA-S. This will test the status of your adrenal glands. If your adrenal glands are not functioning well, T4 drugs or Synthroid will not work and can even make you worse. Another good test is an “RT3” or reverse T3, which is harder to get ordered by many docs because they are not familiar with it, but should be checked if things are still not improving.

    I also have Julia Ross’ book “Mood Cure”. It is an excellent book but please be careful with the kind of supps this book recommends, as there are contraindications to many of these, and do as Heather did and OK this with a professional.

    ——————————————-
    I wanted to get my adrenal glands checked before treating myself but that was not going to happen with my primary care at the time. Everything was falling apart at the seams and I was headed for a crash I didn’t think I’d come out of so I treated myself with Dr. Tietlbaums’ “Adrenal Stress-End supps, which did not have a contraindication to anything I was currently doing. I think they just about saved my life, that’s how sick I was.

    My new doc has since tested my DHEA-S or DHEA-Sulfate, which is a standard blood test test every doc should know about and not have a problem ordering. Mine is still elevated so I still have a way to go but I’m glad to have it documented. Many people are able to get this under control with lifestyle changes but that was not going to happen. All the stress-reducing techniques in the world were not going to get me out of that hell. I think this is partly why I could not tolerate T4 meds and even became worse on it. NDT was not enough by itself either, for me. Unfortunately docs only know about adrenal crisis which you can’t rebound from and need cortisol likely forever. For some reason, most docs don’t recognize you don’t just end up in adrenal crisis and that there is adrenal fatigue/exhaustion before one reaches the stage of crisis.

  12. pat says:

    been there. I have had thyroid problems for 41 years and blah. up and down with medication etc blah weight up, whatever now though since i know i want my medication upped (had thyroid out 30 years ago) but the numbers keep saying no, i have been taking kelp which is amazing. depression sucks but I have learned that I am not and never will again let my thyroid win and yup it gets hard but i am nasty stubborn and I am going to win and I try daily to think of something comical to get over it. sure the weight part sucks and you should go find another doctor who will listen and get things going for you. this is a great site for this and you will notice you are and never will be alone with this

  13. Christine says:

    Nancy
    What I want most to do is to hold your hand, to assure you that you are most certainly not alone in this. Please please please know this.

    It’s an awful place to be in, playing the medicine numbers game. (I was at 400 synthroid, now at 200 and still adjusting) – the symptoms can plain and simple KICK YOUR ASS, it can be the best of times or the very worst of times and right now you are in the bowels of “worst”. For all of that I am so sorry. When you’ve been where you are, and get the chance to be on the other side of it, you don’t want for another single human being to have to experience the same. You’d move mountains, scream from the rooftops to make it so.

    What I can do is offer you my friendship and understanding. I can stand beside you and hold you up until you can once again stand on your own with confidence and a renewed sense of health.

    I know you’ve heard it before but it does bear repeating, it CAN get better, little bits at a time, it can inch into a place where you are better.
    I am in total agreement with the others in relation to blood tests, Adrenal Function etc..

    I mentioned to Katie not too long ago…
    “even in the midst of the darkness…… GAWD the darkness…… each day still is a fight to stay in the light, sometimes I can and do, other times I am stuck in there still. Even after diagnosis and getting proper treatment, the living with it, mourning the loss, the confusion, anger and sadness lingers. While the physical aspects of our disease are harsh, hellish, hateful – I think it’s the emotional and mental toll that takes even longer to heal and recover from” it’s true, while the physical aspects of this were tough, the emotional toll it took on me were almost unbearable.

    Please Please Please hang in there.. take my hand, take our hand, together we will lift each other up.

  14. annacai says:

    Dear Nancy,

    If you have not already done, so please have your vitamin D levels checked. Depression is one of the most important places where my hypothyroidism and vitamin D deficiency overlapped. At the end of winter anyone who has not been supplementing is subject to be insufficient in vitamin D. Sunlight and vitamin D supplements have lifted me enough to keep dealing with the thyroid issues. Best of luck and please don’t give up, never giver up. We need you.

  15. HD inOregon says:

    Nancy,

    I’m very sorry to hear that you feel so rotten. Hang in there!! I hope it will get better for you soon!

    One of my endos ones told me that it takes between 4 to up to 10 weeks for a change in dosage to manifest itself in the body. With me any change in Levothyroxine takes a very long time also. Alas, not like an aspirin for a headache, that kicks in in about 30 minutes.

    I too am very fatigues still, and this week I will, as Tracy suggested, have my adrenal function checked.

    HD in Oregon

  16. Lolly says:

    Nancy,
    so sorry to hear you are in the depths of dispair,things mya seem hopeless right now, but you realy have to fight for yourself dont give up you are worth more than that.

    I have been adjusting my dose now since having my thyroid removed over 3 years ago and even though they say 4 to 12 weks to really feel the change it works fast in me no matter how little I reduce.

    Do write down how you feel symptom wise and get your doc or endo to test all the test mentioned above.
    You are not alone.

    We will hold your hand and see you through this bad time just lean on us that is what we are here for.

    Hugs
    Lolly

  17. NANCY DEBUSK says:

    THANK YOU SO MUCH FOR ALL THE SUPPORT, SOME OF YOU, ALL OF YOU, HAVE GIVEN ME SUCH NEW IDEAS, THAT I WAS NOT EVEN AWARE OF. I WILL TAKE EVERY BIT OF ADVICE AND USE IT, BEING AS I LEARNED TO BE MY OWN ADVOCATE. BUT SUCH GREAT IDEAS!!!!! CALLED MY ENDO TODAY, BUT NO ONE HAS GOT BACK TO ME AS OF YET. THINGS I WASN’T AWARE OF, THAT ALL OF YOU HAVE MENTIONED, I WILL START USING. BUG THE DOCTORS IF THAT IS WHAT IT TAKES. SUCH GREAT PEOPLE AND GREAT IDEAS, SOME OF THESE THINGS HAVE NEVER EVEN BEEN MENTIONED TO ME IN ANY DOCTORS OFFICE. THAT IS A SHAME, BUT I HAVE ALL OF YOU TO THANK.

  18. Dear Thyroid says:

    Nancy;

    We are so sorry that you are going through all of this shit right now; it’s heartbreaking.

    You will get through it. We’re so proud of you for having the courage to share your honest, raw feelings – very brave. We’re here to support you.

    xo

  19. Dear Thyroid says:

    Thymmunity – you bring tears to my eyes and joy to my heart. Loving you to bits and pieces.

  20. Heide says:

    My deepest regret you have been hurt so badly, being ill can drain us completely, but even sick your presence in the world is important! I have been were you are too, I sympathies. I don’t think your Dr. is doing right by you. My sister in law found Top Docs A list of patient recommended doctors around the world, and helped me find a Dr two hours away, I was skeptical but many people had recommended her. I had my first app and to my surprise she was kind and supportive, but best of all listened to me. I came in with a list of my medical history and symptoms . She thanked me for it, and said it would help a lot. Before this I had given up on ever feeling well again, this new Dr. was at least my fiftieth. The people here are wonderful and supportive, I have made new friends who have no expectations for me to be healthy but will cry or cheer as I make progress or fall a step back.
    I know having the strength to do the search and then explaining all you’ve been through can be horrid, writing it down for the Dr. made it easier for me, nothing was forgotten because of my nerves, or my fear that has developed from so many uninformed Doctors. The important part is you need a competent, and caring, Doctor highly educated on the newest thyroid issues. You deserve it!
    Nancy, I have been fighting this problem for twenty years and it is very frustrating, to say the least. I used to worry that the old Dr. would be angry at my leaving, and somehow do something to make me look bad to another Dr. Since I found Dear Thyroid, I have learned what to look for in a Dr. and I can bring research, and studies, backing up my belief that one answer is not right for all people, their is no magic number or dose for everyone. One thing I have found is I had to give up old expectations of myself. I try to find the joy in small things, the green of the grass, flowers,even a new friend who is understanding of what it is like to be chronically sick. May the support of this group give you the extra strength you need to fight for the good health you rightfully deserve. You must be an amazingly strong woman to have been through so much. I look forward to Seeing your future posts in Dear Thyroid, to add support or to vent, it is important to know we are not alone!
    (((hugs))) & love, Heide

  21. Lolly says:

    Nancy,

    You go girl forwarned is forarmed take a list so you don’t forget, ask, no don’t ask insist that they do these tests and then go from there and if you are not happy with this doctor research for a new one.One who will listen and work with you to get you too better place one who is up on thyroid related illnesses and symptoms and one who is opened minded and willing to try things with you. Don’t give up hope, we have or most of us have been there at some point and still struggle from time to time this is a great place for support and friendhship and great advice. We’re a thyamily.

    Heidi,

    What a great reply. sorry that you too have been going through this for such a long time but bravo for taking the bull by the horn and advocating for yourself and finding a better doctor. Your words of encouragement are reassuring and heart felt.

    Lolly

  22. Robin says:

    Nancy,
    I have been dealing with this for 11 years now and the last year and half have been the worst. I was very depressed and anxious, had to quit my job because of it. I found out I was extremely anemic (another great side effect of this disease) anyway, I am normally a very happy optimistic person so this was very weird for me. I really hope you do not throw in the towel, and I hope you find a doctor who will keep looking into other possibilities for you. I asked if I could switch every day from .1 to .112 because I kept varying between the two and I am hoping that works. Keep up the research and keep talking to us that are going through it also. Does anybody else think that synthroid is not as good as it used to be? I was pretty good until the last five years or so, but I am also hypo-parathyroid so it’s sometimes hard for me to tell what symptoms are with what…just a thought! Hang in there girl! There are many hangin’ with ya! Take care!

  23. NANCY DEBUSK says:

    I AM TRUELY HUMBLED BY ALL OF YOUR WORDS. ROBIN, YOU SAID A MOUTH FULL WHEN YOU SAID”DEPRESSED AND ANXIOUS” I KNOW THAT FEELING WELL. I WILL FIGHT THE GOOD FIGHT BECAUSE I REALIZE THAT I AM NOT ALONE, AND I AM NOT CRAZY. EVEN THOUGH ALOT OF MY FAMILY MEMBERS DO NOT UNDERSTAND AT ALL. WHAT NO ONE UNDERSTANDS IS I DID NOT CHOOSE THIS, IT CHOSE ME. MY FATHER, MY SISTER, MY BROTHER, AND I , WE ALL WERE DIAGNOSED AS HYPOTHYROID. SO THIS IS A FAMILY TRAIT. I WENT THERE BECAUSE I AM VERY HONEST. HOW CAN YOU EXPECT ANY HELP IF WE DON’T EXPRESS THE TRUTH?WHEN YOU LOOK AT YOUR DOCTOR, AND HE SAYS IT’S MENTAL, THEN ANOTHER DOCTOR SAYS YOUR BLOOD WORK IS OFF, HOW DO YOU MAKE SENSE OF ALL OF IT? DESCRIBE NORMAL DOCTORS!!!!!! CAUSE I MISS NORMAL!I DON’T WANT TO ACCEPT THIS SITUATION ANYMORE. MY DOCTOR’S OFFICE CALLED BACK TONIGHT, SAID PULL THE SYNTHROID TILL FRIDAY. THEN THE DOCTOR WILL LOOK OVER MY CHART. GEE, THANKS! IN THE MEAN TIME, I WILL TRY NOT TO BE HYPERTHYROID(WHICH IS WHAT MY NUMBERS ARE NOW) OR HYPOTHYROID,BEFORE THE 125MCG’S. CONFUSION IS FROM ALL DIRECTIONS. I AM ARMED AND READY TO MEET HIM HEAD ON, SINCE I HAVE BEEN ON THIS SITE. KNOWLEDGE IS POWER. NOW, I KNOW MORE THAN I DID 2 DAYS AGO. I WILL RESEARCH MORE OF ALL THESE SUGGESTIONS, AND I WILL BE READY! I AM NOT GONNA LET ONE MORE DOCTOR TELL ME BEING ANXIOUS IS IN MY HEAD, SLEEPLESS NIGHTS, ARE ANXIETY, AND DEPRESSION, IS NOT RELATED TO ALL OF THIS. I SAY BULL! I AM ANGRY NOW! SO MAYBE THAT IS BETTER THAT I HAVE SOME FIGHT IN ME. I WILL KEEP ALL OF YOU IN MY GOOD THOUGHTS, AND NOW, THANKS TO ALL OF YOU, I AM READY TO BE INFORMED AND INSIST ON THESE TESTS. IF THIS DOCTOR CAN’T UNDERSTAND THAT, THEN I WILL MOVE ON. NO PROBLEM. BUT IF WE WERE THIS INCOMPETENT ON OUR JOBS, I WOULD SAY WE WOULD HAVE BEEN FIRED. TELL ME I AM WRONG! I AM NOT GONNA STOP TILL I HAVE AN ANSWER. I CAN’T TELL YOU JUST HOW HAPPY I AM THAT THIS SITE EXISTS WITH ALL OF YOU.

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