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EndocrineWeb Community Advice

Nothing is normal! HELP!

From: bitterlion - 48 weeks 1 day ago

Hi, I'm 23 yrs old and I was diagnosed with hypothyroidism when I was 18. Without even explaining what hypothyroidism was, my doctor gave me a prescription and sent me on my way. I took what he prescribed (I was given Eltroxin at the time). After a couple of months, my symptoms got worse. Nothing was getting better. I was tired all the time, barely could get out of bed every morning, was always cold but had night sweats on a regular bases. I stopped taking the medicine after 8months and decided to see what happen. My condition got slightly better so I was convinced that I didn't have a thyroid problem and it was something else. A year after I stopped taking the medicine, I went to a different Doctor. He gave me the same diagnosis, but this time I was put on (Euthyrox). It didn't make me feel better but it didn't make me feel worse either. My results kept fluctuating so I constantly had to adjust my dose. At some point, when I went to get my prescription filled, euthyrox was out of stock so they gave me Eltroxin. And I constantly switched between the two. Little did I know that you should never do that and that it takes about a month for your body to adjust to the medicine. I changed doctors again, and he told me I had hashimoto's disease and was told that that was a combination of both hypo and hyperthyroidism. By this point, my dose was constantly changing and I had tried 2 different medicines and they both didn't really make my symptoms go away. And at some points, my symptoms got worse but I kept telling myself it was because things were more stressful than usual. Fast forward to December 2014. I got my thyroid checked. Test results were fine and when I told my doctor that I just wasn't getting better, he shrugged his shoulders, smiled and said, you're just depressed. My dose stayed the same but 2 weeks after that, I got really sick. It turns out that the dose I was taking was too high so I was getting all these symptoms of an overdose from my thyroid medicine (lost 10lbs in a matter of 3-4days, would be really cold while sweating a lot, my whole body was shaking, I was dizzy all the time, lost my appetite, etc.). It got to the point where I have to be carried to a doctor to try to figure out what was going on. Now one thing I should mention is that I never had ONE doctor that was monitoring my thyroid. Because I wasn't getting better, I constantly changed doctors to get other opinions AND I was also a college student living abroad (probably not the smartest thing). The doctor I went to in January reduced my dose and the symptoms of the overdose went away but I still felt like crap. He also prescribed anti-depressants and told me that I was depressed. I got a tiny bit better but then a lot worse due to circumstances I had to deal with (lots of stress and dealing with family that was halfway across the world, all the while trying to get a job). I told myself that I felt worse because on top of my thyroid problem, I now had depression. Fast forward 10 months later (now), I have reached rock bottom. I have never felt so stuck, so trapped, so helpless in my life and for the last couple of weeks, I just kept telling myself that it's the depression. Right now, I'm not so sure about it. One of the side effects of Euthyrox is depression and anxiety. I have both these conditions so I don't know if it's due to the medicine. I also lose weight like crazy. I've lost 7 pounds in 4 days. I currently weigh as much as I weight when I was 13! I haven't been that weight since then! I look pale, I lose my appetite constantly and have short windows where I have cravings and if I don't get to satisfy that craving, I lose my appetite again. I cry constantly for no reason. Everyone keeps telling me I have everything going for me so I need to snap out of my depression (which makes me feel worse and suicidal). I've been joking a lot about suicide lately and how I should just spare everyone the agony of having to put up with me. I don't think I have it in me to act on those suicidal feelings but it scares me how much I think about it. At this point, neither my antidepressant (I'm on Wellbutrin) and my thyroid medicine are working. At least it doesn't feel like it. My blood tests constantly come back normal so the doctor just tells me that my thyroid is fine and that it's just my depression. What in the world is that supposed to me. There's a lot of stressful things that have been going on in my life since last November but at this point, I think it's beyond that. I have mood swings constantly, I regularly wake up "on the wrong side of the bed", I constantly cry sometimes without anything even triggering it, my depression and anxiety are at an all time low, and I'm exhausted ALL THE TIME. The only symptom that I don't seem to have is the weight gain, I lose weight so easily and without even lifting a finger. Everyone says I'm so lucky that I lose weight easily but I tell them that I would rather be fat and healthy that sick and skinny. I don't think people who don't have a thyroid problem or depression understand how horrible this feels. I feel miserable and I don't know what to do about it. Is it the depression? I don't know. Is it the thyroid? I don't know. Everyone thinks I'm just a big crybaby and nothing is wrong with me and all of this is just in my head since the tests are NORMAL, but nothing about this is normal. I don't know what to do. I don't know why I keep taking my antidepressants and thyroid meds when they make me feel worse but I know I can't stop either. I'm getting a full checkup in the next couple of weeks by yet another doctor who also an endocrinologist. I plan on discussing with him a different treatment plan because this is just not working. I'm lost, hopeless, and out of options. I don't know what to do and I can't live with myself. The saddest part is, I'm visiting my family and I just can't express any emotion, whether it's joy or sadness. I'm just numb and the tears keep falling. Help! I need some hope. I need some answers. I need some advice.

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5 Responses

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I am so sorry you are going through so much! That sounds so rough. I have had some similar experiences. I was extremely tired and so I went to an endocrinologist for 2 years to test my thyroid. While it was a little low, they told me I was "fine." Fast forward three years later and I started having major mood swings and feeling extremely depressed and anxious. I kept telling people I just didn't feel like myself. My chiropractor suggested to try a naturopathic or homeopathic doctor. After having multiple doctors tell me I was just depressed, once I went to a homeopathic doctor I finally had a professional on my side! She listened to me for an hour and a half and had me get way more blood work than any other clinics. She found out that I had hashimotos. Since then she's had me cut out caffeine, sugar, and gluten from my diet. I got off birth control and started taking many vitamins. While I still don't feel fully healed I feel so much better! My husband tells me a lot that he can see a huge change in me. So, if you're open to trying a homeopathic doctor and cutting gluten, caffeine and sugar from your diet, I think it may help. I hope that helps in some little way. I know how alone you may be feeling. Hashimotos is really hard to describe to other people and I never really feel like any one truly understands. I think your depression all stems from your hashimotos. Good luck!!

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You need to be seeing an Endocrinologist, with regular follow ups, and blood tests, in my opinion. I went through everything you are describing, and more. Seven doctors told me there was nothing wrong with me, and more than one recommended a shrink. You. Can. Get. Through. This. I suffered for months, and had the same thoughts and feelings. 15 years later, I am almost always symptom free, and have been for 12 years. You may have to reorganize your life a little to stick to one good endo doc but we are talking about your life here. I am hyperthyroid, with toxic nodule goiter. I would never go to another doctor that doesn't specialize in this. Many doctors skip a rotation in endocrinology because they find it boring. So they only have a cursory knowledge.

Hang in there, you are NOT crazy.

morecatspls

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I am very sorry to hear of the problems that you've been experiencing. Let me see if I can try to help. I am 68 years old. I was diagnosed with Type II diabetes at age 63, breast cancer at age 65, and hyperthyroidism with a goiter and toxic node at the age of 67. Two new thyroid nodes grew within the thyroid properly over the following year. Right now I have about seven different specialists chasing a high white cell count for which none can come up with a diagnosis - though I will admit that some of their attempts have included a variety of potential cancers. Chronic kidney disease also showed peaked out from my blood work over the past six months. My age may have something to do with all of my medical issues - but I also spent 2 years in my 20's trying to convince my doctor to take a gall bladder x-ray because of abdominal pain that had me bouncing off walls at 2 in the morning, developed other disorders that I was too young, too thin, too something to have, was balled out for taking up the valuable time of an emergency room doctor when I suffered from angina in my mid-30's and have rather a long history of medical issues that went misdiagnosed - often for many years - or that puzzled any number of doctors to the point where they simply shrugged their shoulders, wrote worthless prescriptions just to make it look like they were doing something. I wanted to tell you this so that you can stop thinking that you are alone in the world of medicine. It is an art, sometime masquerading as a science and those of us prone to presenting with disease that doesn't match the text book can suffer for many years while chasing answers. Allow me to give you some advise, base on my experience.

First of all, stop chasing doctors. From what you've described you have some form or forms of endocrine disorder that may involve your thyroid and other glands. You need a really good endocronologist. The best are found associated with University programs. Second, you are probably suffering from both depression and anxiety. These can be directly associated with endochronial problems, like hyperthyroidism or (given your exceptional weight loss, the possibility of diabetes), or they can develop all by themselves, or both. In either case, you need to find a good counselor/psychologist who can work with your other doctors as part of a functioning team, prescribe medication that will work with other medication you are on, and monitor your reactions. You also need someone who you can talk to and who will listen - because the emotional issues associated with just plain living - like significant stress or trauma - can significantly affect your physical health and the ability of your medication to work the way it should. Lastly, you need to find a knowledgeable primary care physician, because that doctor is supposed to be coordinating your care, keeping in touch with any specialists, reviewing all lab and related reports, and helping you to understand the issue(s) you are dealing with. You don't sound like you have one. I would recommend with a University medical center to locate a doctor who can handle co-morbid conditions because not all primary care physicians have that capacity.

Doctors can have a wonderful way of handing you a prescription, a diagnosis, and dismissing you from the office without answering your questions and providing explanations. If you have an older, more experienced friend, bring that person with you to any appointment. It's amazing what a second voice and some gravitas can accomplish. When you make your appointment be certain that the appointment desk has scheduled sufficient time to allow you to ask your questions and have them answered. Bring a list of questions with you. These would include (1) what is your preliminary diagnosis(s); (2) what test do you intend to order to confirm your diagnosis; (3) what is the purpose of each of these tests - what do you expect to learn from them; (4) when will the results be available and who will be available to explain them to me; (5) assuming that further testing confirms your initial diagnosis, what is you go-forward plan? Make certain that your physician reviews all of the medications that you are taking and identifies any drug interactions that could be a problem (you can also do this with your pharmacist). You should never simply accept a prescription, fill it and pop it in your mouth. Read carefully the background on the medication, note any drug interactions, side effects, or other information that you need to know. WRITE IT DOWN.

On the subject of writing it down - it helps to keep a daily journal that allows you to note how you are doing in the course of the day. If, for example you are experiencing fatigue, note it. Note when, Note what you did to deal with it. Check your vitals at least twice a day and write them down. Keep track of what you are eating. Note sleep problems. Note when you experience anxiety and nervousness and what was happening when these feelings came over you.

Stick with your group of doctors long enough to allow them to get to know you as well as your condition. And don't run away because a doctor made a mistake. Work through that unless the doctor is unwilling to do so.

I suspect that working with a good endochronologist and getting yourself a good psychologist/psychiatrist will help you a great deal. There are excellent medications to treat anxiety and depression. It may take time for them to build up in your system so that you get the maximum benefit. (note that Welbuterin has caffeine in it, so if you have a problem with anxiety it's probably not the best antidepressant you could be be taking). I take both an anti depressant and an anti-anxiety medication and a beta blocker to deal with palpitations - the result of hypothyroidism, have learned to regulate my diet and the value of regular exercise, and the need to respect my body's need for rest. I have just asked my psychologist to write a letter to my primary care doctor (cc'd to other specialists) discussing my psychological issues, the nature of recent trauma that occurred approximately at the same time as my white cell count hit the ceiling, and suggesting that my psychological conditions, together with medication interactions just might have something to do with my high white cell count - because, through for the past four months my doctors have been happy to talk to me about the possibility of leukemia, multiple meyloma, renal failure and how long I may have before I have to start dialysis none of them have either asked about any underlying psychological conditions, the timing of emotional trauma or the potential that the diagnosis and outcomes discussed with me might just possibly created a level of emotional stress just MIGHT have something to do with my elevated white blood cell count - even though the number of medical papers written on the subject could easily cover a city block.

Good luck to you. Just know that the presence of even serious medical conditions does not mean that you cannot live a good and high quality life provided you do not allow these problems to become the sole focus and you take the appropriate steps to deal with them.

Above all - tell people who tell you to just "snap out" of your depression and anxiety to take a hike. They don't belong in your life. You can't just will yourself into wellness and your medical problems are real unless proven otherwise. Anyone, including a doctor, who fails to acknowledge that is unhelpful.

Is this good advice?
0

I am very sorry to hear of the problems that you've been experiencing. Let me see if I can try to help. I am 68 years old. I was diagnosed with Type II diabetes at age 63, breast cancer at age 65, and hyperthyroidism with a goiter and toxic node at the age of 67. Two new thyroid nodes grew within the thyroid properly over the following year. Right now I have about seven different specialists chasing a high white cell count for which none can come up with a diagnosis - though I will admit that some of their attempts have included a variety of potential cancers. Chronic kidney disease also showed peaked out from my blood work over the past six months. My age may have something to do with all of my medical issues - but I also spent 2 years in my 20's trying to convince my doctor to take a gall bladder x-ray because of abdominal pain that had me bouncing off walls at 2 in the morning, developed other disorders that I was too young, too thin, too something to have, was balled out for taking up the valuable time of an emergency room doctor when I suffered from angina in my mid-30's and have rather a long history of medical issues that went misdiagnosed - often for many years - or that puzzled any number of doctors to the point where they simply shrugged their shoulders, wrote worthless prescriptions just to make it look like they were doing something. I wanted to tell you this so that you can stop thinking that you are alone in the world of medicine. It is an art, sometime masquerading as a science and those of us prone to presenting with disease that doesn't match the text book can suffer for many years while chasing answers. Allow me to give you some advise, base on my experience.

First of all, stop chasing doctors. From what you've described you have some form or forms of endocrine disorder that may involve your thyroid and other glands. You need a really good endocronologist. The best are found associated with University programs. Second, you are probably suffering from both depression and anxiety. These can be directly associated with endochronial problems, like hyperthyroidism or (given your exceptional weight loss, the possibility of diabetes), or they can develop all by themselves, or both. In either case, you need to find a good counselor/psychologist who can work with your other doctors as part of a functioning team, prescribe medication that will work with other medication you are on, and monitor your reactions. You also need someone who you can talk to and who will listen - because the emotional issues associated with just plain living - like significant stress or trauma - can significantly affect your physical health and the ability of your medication to work the way it should. Lastly, you need to find a knowledgeable primary care physician, because that doctor is supposed to be coordinating your care, keeping in touch with any specialists, reviewing all lab and related reports, and helping you to understand the issue(s) you are dealing with. You don't sound like you have one. I would recommend with a University medical center to locate a doctor who can handle co-morbid conditions because not all primary care physicians have that capacity.

Doctors can have a wonderful way of handing you a prescription, a diagnosis, and dismissing you from the office without answering your questions and providing explanations. If you have an older, more experienced friend, bring that person with you to any appointment. It's amazing what a second voice and some gravitas can accomplish. When you make your appointment be certain that the appointment desk has scheduled sufficient time to allow you to ask your questions and have them answered. Bring a list of questions with you. These would include (1) what is your preliminary diagnosis(s); (2) what test do you intend to order to confirm your diagnosis; (3) what is the purpose of each of these tests - what do you expect to learn from them; (4) when will the results be available and who will be available to explain them to me; (5) assuming that further testing confirms your initial diagnosis, what is you go-forward plan? Make certain that your physician reviews all of the medications that you are taking and identifies any drug interactions that could be a problem (you can also do this with your pharmacist). You should never simply accept a prescription, fill it and pop it in your mouth. Read carefully the background on the medication, note any drug interactions, side effects, or other information that you need to know. WRITE IT DOWN.

On the subject of writing it down - it helps to keep a daily journal that allows you to note how you are doing in the course of the day. If, for example you are experiencing fatigue, note it. Note when, Note what you did to deal with it. Check your vitals at least twice a day and write them down. Keep track of what you are eating. Note sleep problems. Note when you experience anxiety and nervousness and what was happening when these feelings came over you.

Stick with your group of doctors long enough to allow them to get to know you as well as your condition. And don't run away because a doctor made a mistake. Work through that unless the doctor is unwilling to do so.

I suspect that working with a good endochronologist and getting yourself a good psychologist/psychiatrist will help you a great deal. There are excellent medications to treat anxiety and depression. It may take time for them to build up in your system so that you get the maximum benefit. (note that Welbuterin has caffeine in it, so if you have a problem with anxiety it's probably not the best antidepressant you could be be taking). I take both an anti depressant and an anti-anxiety medication and a beta blocker to deal with palpitations - the result of hypothyroidism, have learned to regulate my diet and the value of regular exercise, and the need to respect my body's need for rest. I have just asked my psychologist to write a letter to my primary care doctor (cc'd to other specialists) discussing my psychological issues, the nature of recent trauma that occurred approximately at the same time as my white cell count hit the ceiling, and suggesting that my psychological conditions, together with medication interactions just might have something to do with my high white cell count - because, through for the past four months my doctors have been happy to talk to me about the possibility of leukemia, multiple meyloma, renal failure and how long I may have before I have to start dialysis none of them have either asked about any underlying psychological conditions, the timing of emotional trauma or the potential that the diagnosis and outcomes discussed with me might just possibly created a level of emotional stress just MIGHT have something to do with my elevated white blood cell count - even though the number of medical papers written on the subject could easily cover a city block.

Good luck to you. Just know that the presence of even serious medical conditions does not mean that you cannot live a good and high quality life provided you do not allow these problems to become the sole focus and you take the appropriate steps to deal with them.

Above all - tell people who tell you to just "snap out" of your depression and anxiety to take a hike. They don't belong in your life. You can't just will yourself into wellness and your medical problems are real unless proven otherwise. Anyone, including a doctor, who fails to acknowledge that is unhelpful.

Is this good advice?
0

Speaking only for myself, I was told that I had depression and anxiety as well. That does not necessarily mean I needed a psychologist. As soon as I was diagnosed, and properly treated, and my hyperthyroidism brought under control, my symptoms disappeared. I still have occasional anxiety attacks, for which I take an occasional tranquilizer, instead of the heavier drugs they wanted to give me. My point being, that I would recommend going to a shrink only after a good endocrinologist evaluation. I wanted to pull my hair out if one more doctor told me it was all in my head, when I knew it wasn't. It's a common symptom of hyperthyroidism to be anxious, and who wouldn't be, when you are sick with 30 crazy symptoms that change all the time! Same for depression. Why let yourself be doped up, if you don't need to be.

Ellenruth, please don't think I am dismissing your suggestions, as they may be valid. I just think that too many doctors take the psychology route when women have complaints that maybe they just don't have the answers to.

morecatspls

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