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Dear Thyroid Community, What Do YOU Think Is Wrong With Me? Did I Mention, I’m Just A College Student?!

Post Published: 30 August 2010
Author:
Category: Dear Thyroid Letters
This post currently has 20 responses. Leave a comment

Hi Everyone – Katie here. I don’t normally introduce letters, but this isn’t a letter. This is one of our recent community members with a lot going on. She’s young. She’s in college and her concerns and issues have concerns and issues. After speaking with Daniella, she graciously agreed to allow me to post this email. I wanted to put this out to the community, so everyone can share their experiences with Daniella. After all, you are pretty awesome and fiercely intelligent. So… What say you?

My name is Daniella, I was in contact with you on March 23rd on Twitter regarding my thyroid concerns. Thank you for agreeing to read my story.
In February 2003 I was diagnosed with a severe coarctation of the aortic valve. The doctors told me I would be going in for surgery likely the following spring as I was headed to college in September 2003. They were going to wait until I finished my first year as the back log of patients wouldn’t allow for me to get in before I started school. It was explained to me that it was a miracle that the doctors we able to diagnose such a condition as its usually not diagnosed until the condition kills its victims, which in my case would have been by the age of 45 or during child birth, should I have chosen to have children. In November 2003 I was contacted by a nurse from the hospital performing the surgery indicting they had an opening on December 19th for the surgery and that because of the severity, they would prefer not to wait until spring and she understood I had a month off school for winter break.  My 19 year old self tried everything to put this off as I was terrified, but I soon found out that placing that call to me was the last step and that everything had already been set up and was in full motion. I soon found myself in pre op and before I knew it December 19th 2003 had arrived.

As I was wheeled into the surgery I noticed that all the nurses had these bizarre bright pink and green colored outfits on. I watched them suit up in the hallway. Judging by the way they were slinging these things around, they were heavy. I asked a nurse what it was that they were wearing and she told me it was magnets to protect them from the radiation. They had a small piece covering their necks a big one that they pulled on over their heads that covered their backs and fronts. From what I can remember they had something on their heads as well. As I was lying on the surgery table completely nude, a nurse came over and said this will be like a bikini bottom and covered a small area with a rolled up towel. She then said “lift up your back side” and she slid something under me and told me it was a magnet to protect my ovaries from radiation. I never gave any of this a second thought until the day I realized it may be coming back to haunt me. I returned to the same sort of procedure in the same type of room again in November 2004.

Now to fast forward to the summer of 2004 I was beginning to notice that I was getting anxiety and I was no longer able to handle family drama or work stress from my summer job. I was getting an instinct in me to run for the hills. I convinced myself it was because I had been away and had become accustom to only taking care of myself and had been living a carefree college life. I began to count down the days until my college return.

As August ended I packed up my belongings and hit the road back to college. I began to notice that I was feeling kind of “off” I was experiencing dizziness and positional hypotension. There was times when I was sweating or freezing I never really felt comfortable. I was always tired my friends would laugh because I never lasted through a movie no matter what time of the day we were watching I was out like a light. I was even feeling a little down for no apparent reason. By the middle of September this got worse I remember feeling like I was falling backwards and being dizzy a lot when I was walking down the halls at school and I couldn’t focus I had to read the same thing 3 or 4 times to understand it. I began getting big bruises all over my legs and arms I remember leaving my room and going to visit a friend I sat on the edge of his bed and had my legs crossed and my leg was just touching his desk that was beside his bed. That night when I went to bed I had a bruise as big as my fist on my leg the exact spot that was against his desk. This went on for awhile I found it very alarming. My period had also become unbearable it went from 5 or 6 days to 8 or 9 of excruciating pain and heavy flooding flow, there were days where I couldn’t even get out of bed or get dressed I laid in a ball in my bath robe.

It was the weekend of November 4th, 2004 when all hell broke loose. I had what seemed like a severe anxiety attack I couldn’t breathe my head and heart were racing and nothing seemed real. I went to the emergency room and they ran some tests I never saw any of them but was told they were all normal. A social worker came in to talk to me about the stress of school and when to know when to walk away from a bad situation and take a break and so forth. This was all surreal I had no idea what was happening to me but I knew I hadn’t been feeling well for awhile and this had nothing to do with school or stress. Before coming to school I was working at a busy doctors office as a manager I got this job in highschool filing and so forth when I decided to take time off school after high school I was hired full time that was stress not living carefree in a dorm with a thousand kids my age having the time of my life. I tried to tell these docs and social workers they had it wrong and they wouldn’t listen they advised me to get in touch with my family doctor and discuss going on anti anxiety meds. After a few trips to the emergency room, I got in touch with my family doctor back home. He ordered a lot of tests.

I remember doing a lot of blood work and abdominal ultrasound and 24 hour urine test. He said he was testing me for thyroid and other hormonal problems as well as a disease called Cushing’s syndrome and looking for a tumor on my adrenal gland. After calling him during many of these episodes of racing heart and head, shortness of breath and at times even inability to walk properly (I was staggering) he began to question me about what I had recently eaten and drank and we soon found out I was having severe hypoglycemic attacks. He told me to drink orange juice while he waited on the phone and after about ten mins it stopped but I soon noticed if I didn’t eat it would happen again and hour later. I then went in for more tests he was checking for an insulin producing tumor. All of these tests came back normal. The doc suggested I go on anti anxiety meds (paxil) and adivan for breakthrough attacks. Feeling lost and like I had nowhere else to turn I agreed. I remember for quite awhile I was walking around in a haze or fog everything seemed surreal I didn’t know who I was anymore. One time I was sitting in class and looked around and nothing seemed real it was like I was in a huge fog I had to excuse myself and stand outside for awhile. I was in the middle of my worst nightmare and couldn’t wake up.

When second year finished I was suppose to stay in Toronto with my college friends but I was so messed up I went home to try and get my life back. I started frequenting my family doctor he sent me to an endocrinologist who was really old and was half laying down he didn’t like my direct questions and grabbed me my the back of the shirt and kicked me out and sent a note back to my family doctor saying I had psychological problems.  I went to see another endocrinologist who ran a few hormone tests and another cushings screening and told me he was releasing me with a clean bill of health. I became the laughing stock of my doctors office the last time I seen this particular family doctor he laughed at me and one of his staff members told me they were going to get me a psych. Consult.

In January of 2007 I got a new family doctor. I had been having a lot of pain in the front lower right part of my neck and someone pointed out to me a swelling in that part of my neck. The new family doctor told me would run as many tests as he needed to in order to find out what was going on with me. He started with some blood work and an ultrasound of my thyroid. For the first time in a long time I had hope that I would finally get some answers. You know you’re in a bad place when you’re hoping for a diagnosis instead of good health. Two days after the tests were run I got a call the nurse told me I had to come in for my results and that they found something. I was nervous going in but was thinking at the same time that my prayers were about to be answered. When I got to the appointment the doctor told me they found two 2mm cysts on my thyroid, my cholesterol was high and my iron low. He said there was no course for further action and that he would be sending me to the local dietician for some lifestyle changes to improve the cholesterol and weight problem and to take a supplement for the iron. He said that a huge amount of the population had thyroid cysts and it was completely normal. When I left that office I felt like my world was crashing down around me I was no further ahead than before. I started frequenting this doctor now with my continued symptoms and pain and discomfort in my neck and he had his staff tell me that my mind and body had lost all connection and the symptoms mean nothing. They asked me to go back on anti anxiety meds and to go to cognitive behavioral retraining where I would learn to live with not feeling well because it was never going to change or get better. They also suggested I look into alternative healing like praying or reiki.

I began doing a lot of research on the internet and became more and more convinced that I had a thyroid problem. I went back and looked at all my old tests and watched my tsh rise with each new test from 1.99 –> 2.22 –>  2.5 –> 2.7 –> 3.9.  I have had it tested 3 times in the past year and it has consistently been 3.9. I had a walk in clinic refer me to see a new endocrinologist last year and she told me that a tsh of 3.9 cannot be treated it is only treated when it reaches 10. She agreed that mine has a history of rising but also said that she has many patients who don’t follow up with theirs and stop taking medication and end up with a tsh of 100 and not only don’t have any symptoms except being a little tired but have only gained 10 pounds which is all water and drops off once she gets their TSH down again.

I have recently lost my job and my family has given up on me. They want me to check into a psych ward and seek help. I have gained a lot of weight since this all began and have to eat little bits frequently or I have hypoglycemic attacks. I find that my body is not digesting food properly and I am no longer able to eat anything sweet; if I were to try to eat candy, sugar or even a sugary drink I have a crippling low sugar attacks and my sugar spikes up and crashes. There is also a lot of fruits I can’t eat any longer including grapes and melons. My family is convinced I am having some sort of post traumatic stress from the surgery and am now just fat lazy not to mention crazy.

Here is a list of symptoms I am having:

– fatigue
-muscle aches
-bottom of my feet ache
-developed yeast allergy
-developed an intolerance to gluten
-blood sugar problems
-constipation
-hair falling out
-high blood pressure
-eyes have a starring look
-weight gain
-gagging
-discomfort in neck (sometimes all the way to my ears or even the back of my neck gets sore)
-inflamed neck in the morning (yawning brings awful pain feels like my throat is being stretched)
-dry flaky itchy skin
-itchy inner ears
-bloating
-gas
-snoring
-loss of interest in daily activities
-head sweating
-being cold
-skin cold all the time even if I don’t feel cold
-acne (face neck chest arms back)
-cracks in corners of mouth (gets crusty to) been there since sometime in October
– recurrent right eye infection (3 times in last 6 months)
-emotional
-heavy painful periods
-blurred vision at times (also see black spots sometimes)
-trouble falling asleep and staying asleep
– feel withdrawn and prefer to be alone
-difficulty exercising
-difficulty climbing stairs
-swollen hands feet and legs
-periods of drowsiness during the day
-puffy face (some days worse than others)
-prickly feeling at front and back of neck (maybe from nerves)
-become claustrophobic
-nervousness
-big belly
-irrational fears
– obsessive compulsive with having food ready to eat (because of the allergies there really isn’t anything quick I can eat so I have cooked meals ready to go at all times. I find I’m snacking when I don’t need to or shouldn’t be to avoid a hypoglycemic attack)
– I wake up with pain in my throat most days early in the morning 2 ..3 sometimes 4 a.m.

There is probably a million more things I should be mentioning that I’m forgetting. Anyways back to my question could the radiation that I was subjected to on two occasions have damaged my thyroid. This did all seem to happen after that. And is it also true that one could be suffering from a thyroid problem for years before it shows up on the tests and that is manifests itself slowly?

Am I holding onto nothing here? I truly hope I haven’t lost 4 years of my youth and become unrecognizable for nothing!

Its funny one of the doctors actually told me “you have already been given a gift and been diagnosed with the heart condition that is virtually undetectable. There can’t be anything else wrong with you” …….. I’ve been through a lot and it all makes me wonder.

Feel free to ask anything personal or not and thanks again for reading this loooonnngggg email 🙂

Daniella

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20 Responses to “Dear Thyroid Community, What Do YOU Think Is Wrong With Me? Did I Mention, I’m Just A College Student?!”

  1. Hypogirl says:

    Daniella,
    I have skimmed your letter and will return to read it more throughly later on tonight. Once question – you mention that they put a magnet on certain parts of your body during surgery – do you remember them putting on on your neck? I had Scoliosis as a child and had nurmerous x-rays on my back. While they put something around my lower half and my chest – they never put anything on my neck. I am thinking there may have been a correlation. It’s just a thought. I was pretty young 5-6th grade. So I am not sure…

    3.9 is probably high for your body system (everyone is different)! DO NOT WAIT any longer to get on some form of thyroid med. Getting on it sooner than later will result in a ton of wellbeing! The longer you wait the longer your recovery time. Please seek a new doctor if they don’t agree.

  2. Missy says:

    You’re email is heart breaking! What is wrong with Drs? Why can’t they see that we need help??? Many of the symptoms sound like thyroid issues. I’m not an expert on radiation, but I wouldn’t doubt that it could damamage your thryoid!

    You must be your own advacate. If one Dr. says nothing is wrong, go on to another, or insist on other tests. You know you are not feeling right, don’t let them tell you it’s in your head. Thyroid causes SO many problems. You are paying for these tests, remind the Dr. of that, that if you want it you deserve to have it done!

    I wish you the best of luck. Please keep us informed.

  3. Donna says:

    Hi Daniella,

    I am so sorry you have had to live this nightmare but happy that aortic valve problem was caught and you made it through that. That you for the detailed information. I am a follicular thyroid cancer survivor and can tell you that many of the symptoms you are experiencing are totally related to your thyroid messing with you. I’m certain that this lovely community will confirm that. You are not alone and you are too young to go through this alone.

    Since your luck with endos seems to not have worked out so well might you be able to find a good internist as your family doctor? This was the best change that I made towards getting my life back. They understand how everthing affects your thyroid and the trickle down theory of it all, if you can find a good one they can help you. If I did not need an endo for follow up cancer stuff my internist could treat me for that too.

    You are not crazy, these thyroid symptoms can certainly make you feel that way sometimes but if you can get to a better place with those levels I do believe a lot of your symptoms can be alleviated.

    Regarding the anxiety meds there are days they probably do help but my experience with them made me numb to my body and I did not react as quickly as I should have to many things. I’m not saying you should not take them, just take them with care. I think my former doctor had no problem numbing me with klonopin, kept me off his ass.

    You can get your life back, you need a plan of action and find a good doctor who will listen and be a partner in your care and treatment. They do exist. Please do everything you can to continue educating yourself and be an advocate for yourself. You have way too much life to live to just accept this as your destiny. I know you won’t because you would not be here if that was the case.

    One step at a time honey. I’m sorry you don’t have the support you need from your family and friends. It is difficult for those that don’t have these problems to really understand. But, you have us now and we will be here for you to celebrate each victory and to pick you up when you run into an obstacle.

    I am proof positive that it can and will get better. It took me time to stop letting doctors determine my well being. I’m in charge now and won’t accept mediocre care, I wasted a few years letting them misdiagnose me and I don’t blame them 100%, I was an active participant who chose the wrong path. I don’t beat myself up about it because if I did not get to the bad place I would not be as educated and informed about my disease. My life will be better going forward because I am an advocate for myself. I know my shit and the doctors know it.

    Hopefully, you can get some relief soon. I’m not big on medicating yourself but some of the natural thyroid stuff that you can get over the counter might be an option but please do your research first. There are also supplements that can help with some of your symptoms if you are interested. And I know exercise is tough when you feel crappy but how about a nice brisk walk each day?

    Keep you eye on the ball honey, you are heading in the right direction. Make a list of what you can do and start making those things happen. I know it is easier said than done but you can’t get better unless you start somewhere. It will help your mental spirit just knowing you will eventually get some relief.

    It is possible that the radiation may have done some damage but it is what is is and it is better to focus on what you can do, use your energy for positive results. Forget the shit care you received and demand better care with a fresh non defeatist attitude.

    I hope I don’t sound pushy and I know it is not easy, I do but I want you to get to a better place and you can. We all can and some of us have.

    Good luck and please keep us informed. Healing positive thoughts being sent your way with a huge hug!

    Donna xo

  4. jillautumn says:

    Daniella,

    Your letter made me cry because I have been through the same exact things over the past ten years and it was almost like reading a letter from myself. Thyroid disorders can cause many pychiatric disorders and I have found that doctors would rather dismiss issues as anxiety and depression because its easier for them. Truly sad. It took me ten years, and eventually getting pissed off to make a change. You can go to 20 doctors and if they dont want to help you, you need to find doctor number 21. I have both Graves and Hashimotos, as well as a few other issues (including cardiac) that were all misdiagnosed as depression. Because of giving into these doctors and going with what they said, rather than my own gut feeling, I almost died. I got that ill because I wasn’t being properly treated.

    Don’t let it get that bad. No matter what condition or disorder you may have, I urge you to search for a doctor that will help. If you have exhausted all resources in your city, drive to the next city- and then the next. It is worth the time and effort and eventually you have to come across a competent doctor. Dont stop until you find him/her. That is what I did.

    I wish you the best of luck. I wish there was more I could say.

  5. Justi says:

    Take your list of symptoms, and keep shopping around for a doctor who will treat YOU, and not your symptoms. I went my entire adult life undiagnosed. I had many of your same symptoms, I was told my one doctor that I was Bi-polar…I disagreed (while crying hysterically). The psych doc challenged me to do an out patient for 3 weeks, and if the psych’s there had a different diagnosis she would recant hers. I was diagnosed as Major Depressive disorder after my miscarriage, and dealing with things like hair loss and vertigo.

    My point is your thyroid will make you feel crazy, but your not. I moved cross country, shopped through doctors until I found one who kept digging until he found I had been living with Hashimoto’s Auto Immune disorder. More tests all normal or inconclusive, I took a huge leap of faith and had my thyroid removed. They found a tumor in it that none of the lab tests, or biopsy’s revealed.

    I was actually relieved when they said hey you have Hashimotos, and oh sorry cancer…because if finally validated that I was SICK not crazy!

    XOXO I will keep you in my thoughts and good wishes!

  6. thehoot says:

    Find a doctor who you feel comfortable with, who will listen to you, and ask about the following conditions and/or tests: Hashimoto’s thyroiditis, Grave’s disease, Carcinoid Syndrome, ANA test, Lupus, Sjogren’s Syndrome, PTSD, PCOS, ITP (idiopathic thrombocytopenic perpura), and Mastocytosis.

    Explain to them exactly what you told us about the history of radiation exposure with those procedures, an do not rest until you find a doctor who will take you seriously and work WITH you. Get copies of every single record, report, and test result from every doctor an hospital you’ve been to. Put them in a binder and research what you find in them. Ask questions of the reporting doctors if there are things you don’t understand.

  7. Linny says:

    Dear Daniella,
    I am so sorry you have been thru so much. You are a very bright articulate young woman. It is clear to me that you think very clearly, remembering all these details does not suggest you have any mental imparement.
    I think they , in the medical profession have wronged you….making your illness a joke? What principles could they possible have to injure you this way. Too bad we don’t have a REAL HOUSE DR to put these lazy Dr.’s to work. The EGO of some is unexcusable.
    You went thru a very tramatic experience with your treatments of raditation. I would want to ask what they were protecting themselves from if not YOU< the patient. When did it happen that the patient is put last?
    I am not qualified to tell you medical advice, but I would like to share what helped me after I tried all "conventional medicine" . I tried Holistic, and can tell you that it has changed my life for the better. I have been appling these choices in my lifestyle and will never do things the OLD WAy,completely. I do feel it necessary to be 1/2 and 1/2 with this measure. Medicine compliments Holistic and you can get balance from both.
    I am confident you will find answers, don't give up….you are valuable. We in this group of wellwishers we be here for you…..xoxoxoxoxLInny

  8. HDinOregon says:

    Dear Daniella,

    You’ve been through hell. – I agree with the posters before me, please do find a doctor who treats you right and that you trust. – Don’t put up with doctors who tell you all is OK, you know otherwise.

    You write about the “magnets” that the nurses wore and that were place on your body. I never heard of magnets being shielding against radiation, but I did hear that lead absorbs radiation very effectively. So maybe that is what is was and the nurse was confused.

    As to thyroid issues and your TSH numbers, they are not the whole story. Your values may be “in range” (and even then there are differences between blood testing labs), but there may other things to look at. You see the thyroid takes the T4 hormone and converts it into T3 hormones, and even with “normal” TSH levels this conversion may be impaired. Pls see this article:
    http://thyroid-disorders.suite101.com/article.cfm/understanding_the_t3_and_t4_thyroid_hormones

    So, please have your doctor not just check your TSH, but also T3 and T4, and freeT# and freeT4 levels. If any of these is off, even though your TSH is OK, there might be a problem.

    I wish you best of luck,
    and I am sending many healing thoughts your way.
    Hang in there!!!
    And, please find a new doctor!!!

    {{{ Hugs }}}
    HD

  9. sadiemac says:

    Hi Daniella,

    I am still fairly new to this community, but I can tell you that you’ve come to the right place. I so relate to that “head for the hills” feeling, I sometimes stare at the tree-line in the distance and fantasize about running wild in the woods where civilization and its trappings can no longer smother me. And the staring gaze? I have that too, sometimes I find myself frozen in place for minutes at a time unable to move, and sometimes I come out of this trance and have no idea how long I was “frozen”. I share many of your symptoms, though my only off-kilter lab was a suppressed tsh.

    My endo says that some people are just more sensitive to thyroid imbalances than others, and I love him for saying this. I just know that this is true, and that over time and with more awareness, all doctors will come to accept this reality and incorporate it into their standard of care. Until that time comes, you’ve got to hang in there girl, and keep pushing for answers. Lean on this community hard and often, there is strength enough here to get you through and nobody here is gonna tell you that you’re crazy!

    Sadiemac

  10. Maria Minno says:

    It sounds like you have a bunch of serious nutritional deficiencies. Very likely that the radiation damaged your thyroid and much more. Were those really magnets, or were they lead? They use lead to stop gamma (x) rays. I don’t think doctors use magnets. That’s alternative medicine! At your age it is still probably possible to recover completely, but not if you keep going to doctors who don’t know what they are doing.
    I recommend contacting Dr. Thomas Cowan. He’s the only one I know of who works over the telephone who can help people with complex issues such as thyroid problems. He works holistically, and understands that mental and physical health are closely tied. It’s unconscionable for a doctor to blame you or laugh at you, and I am sure he would not do either.
    http://fourfoldhealing.com/
    Best wishes to you!

  11. M says:

    Daniella,

    You have been climbing a steep hill and have yet to reach the top. Keep pushing yourself…YOU have to lookout for your health and well being. YOU have to push Dr’s and ask questions and educate yourself.

    I recall the years prior to my diagnosis. The way I felt, how my body had changed and seriously contemplating investing into Kimberly Clark…. to say that it was nerve racking would be an understatement.

    I asked for copies of test results. I kept a journal of what was said. I felt that every where I turned someone was attempting to apply a bandaid to fix the problem rather than solve it.

    Keep looking for a Dr who hears you, who listens and takes account of what you are telling them. Do NOT settle until you find one, because once you do, you FEEL better. You feel as though you are finally understood.

    You are not alone on this leg of your journey. You have a community to support you, to provide links and information, and this will arm you for your fight against this disease.

    You are not holding on to nothing!

  12. Alice says:

    You may NOT FIND a doctor that will help you, especially if you don’t know what tests and treatments to explore.

    If u find a doc that is kind and open minded that is often the best you can do… but it’s important you learn as much as you can…

    start here,

    google stop the thyroid madness, this is what started me to finding out about my thyroid issues (this may explain the problems you have had with proper diagnoses/doctors/treatments). there are two yahoo groups (the links are on the STTM site) also that offer phone consults (that’s what i did because i couldn’t focus very well).

    Unfortunately you are learning the downside to much of modern medical care, you will have to be your own advocate, you can do it! stay determined!!

  13. Nicola says:

    Daniella, You’re not alone. I’m agreeing with the rest of the butterfly babes that you need both to double check that thyroid for your issues and to also dont give up.

    1. Your previous medical monkeys need a heapin healthy bitchslapping. Any doc who’d grab my shirt-front or back-would get his nuts shoved back up his pelvis. Plain and simple. The rest of the jerk staff who laugh at you are ignorant and are aparently in their jobs becuase of the tough economy and insurance and have No place in the medical profession. I do not recommend you go bitchslapping anyone at this time…however, take heart knowing you are not alone in this frustration of quality medical care….let alone their weight in skills, heart and smarts. It’s a thin market.

    2. Take some time out in between appointments and get yourself a composition notebook. Each day write things like what you ate and drank, what medicine you are on (how much etc.), a general entry about your day (made love to hubby, contemplated getting my hair cut like jen anistons, eliminated a lingering debt-go me, best friend getting married) This gives a short to the point events of the day that might affect your moods.
    *If you are feeling depressed, claustrophobic, annoyed, angry…even happy. Write that down as well. Ask yourself, “WHY am I feeling like this?” If a logical answer doesn’t come up to mind (ie: had to put the dog down, went home in rush hour traffic-moron in front of me is on his cell phone…etc…) it’s best to mark that down “No Reason I can think of for being sad/upset” so you know the triggers…If it’s concrete write it down anyways…screwy thyroids can amplify emotions which makes them sound very much like the see/saw of bipolar disorder. If it is, You’re just having a crappy day. And those days can be treated by therapy, art and all that lovely new agey mumbo jumbo that’s recommended to you. 😀 I’m with many others here that think you need things better treated medically and you need better respect from the medical and familial community of yours but dont knock shrinks and praying time.

    3. I’m very happy with my Doc at Cleveland Clinic. If you dont find what yu’re looking for…it’s worth the roadtrip to check out doctors in another town.

    4. Forgive your family. The jerk docs and medical staff still need slapped I believe but Your family can be ignorant of what’s going on with you, but you can’t blame them for not knowing what’s truly wrong with you when you’re still figuring it out yourself. It’s important to educate yourself as well as offer them something to look at as well. Everyone’s going through something so maybe just let them breathe a little and approach them gently.

    5. Take your time and forgive yourself and dont overwhelm yourself with that you can’t control. You have low iron? you’re taking iron…High Cholesterol? You’re working on that as well. Feeling like the sky’s crumbling? IT’s not. You’re fine. Unless you have a drunk next door operating a wrecking ball by your home…there’s a 99.9% chance you’ll be just fine and check into some of that neato new agey stuff that helps with stress: …reiki….sushi…I recommend cucumber rolls. 😀 <3

  14. Nicola says:

    Justi, My hugs are with you too. I’m a Battling Butterfly Babe too!

    Yes, Daniella. Definitely check your antibodies (Hashimotos) and the A1C & DHEA-S (PCOS) for those painful periods and sugar problems. My superEndo put me on stuff for insulin resistance (for the PCOS) and finally thyroid medication.

  15. LisaPisa says:

    Daniella,
    I had a lot, like 85%, of those symptoms you listed with Graves disease! You’ve learned a lot of self care so far just trial and error! Now you have a place where you can ask questions – and get answers! My dietary suggestions would be to stay away from soy products! Cut them out of life completely. They will make you feel tired and lethargic. Read labels. Soy is everywhere. It’s great that you are cooking for yourself. Watch how different things react with you. I discovered randomly that I can’t eat millet.

    Do you wear contacts? You mentioned eye infections. I got them repeatedly with my hard contacts. It turned out it wasn’t infection it was my eyes changing shape and not fitting the contacts anymore and dry eyes. I went through many eye prescriptions. I don’t wear contacts at all anymore. Glasses are more comfortable anyway.

    I can give the name of my Dr in Seattle if it helps. He’s really good.

    And don’t discount alternative medicine. Naturopathic and acupuncture helped me lots, too.

    Take one day at a time. You’ll make it!

    Lisa

  16. KeiraVivian says:

    Daniella,

    Where do you live, sweetie? I bet between all of us, we can recommend a caring endo in your area. Like others in the community, it took me many years and many doctors to receive a diagnosis. And, the difference for me truly was a dedicated, caring, open professional. If it provides you any comfort, your symptoms sound quite a bit like mine (thyroid cancer and Hashimotos). I am so sorry that you are hurting and that you have to go through all of this. I promise you, there is a light at the end of the tunnel.

  17. Katie says:

    definitely sounds exactly like Hashimoto’s….some of your symptoms very hypo some of your symptoms very hyper. I have struggled with hypoglycemia all of my life, I suggest a protein diet. I also carry nuts with me for when I feel my blood sugars dropping. With Hashi’s it is very important to just understand what your body is telling you each day. The bottom of your feet hurting, muscle pain and fatigue is normal with this disease and is the fibromyalgia that goes with Hashi’s. You can try to take magnesium and Vitamin D to offset that.
    If you are not on synthroid or thyroid replacement a small dose can help reduce the cystic activity. But the best thing is a no to low carb diet…it seems the cysts feed off of carbs and grow larger with carbs and stress.
    Just having this disease causes stress, so 30 minutes of low activity everyday is a must, Curves is an awesome workout for fibromyalgia sufferers or just walking…you must break through the pain and if you do it everyday it will get easier. I also highly recommend soft massage as a way to release the knots of fibro….inserts in your shoes may help your foot pain, I use Heelthatpain.com for my inserts….and my feet feel 100 times better. As far as the brain fogs and anxiety, hopefully if you eat Hashi friendly low carbs, exercise, and try breathing and relaxation techniques it can bring relief of some of the symptoms. Each day is a new day…you will learn what works and what does not. Also, what works this week may not work next…but as a 10 year unmedicated Hashi’s sufferer and 5 more years medicated to date, I learned diet is the best medicine out there. Also controlling your blood pressure and cholestrol is a must, our bodies in this hyper hypo state are unable to stabilize this on its own so low doses of these should be enough. Your sugar levels can be controlled with diet….again low carb…I try to eat no more than 50 grams of carbs in a day….30 to lose weight….and that is not much when two slices of bread can wipe out my whole days worth….

    After 15 years with Hashi’s, I am finding quite a few members of my family also are now being diagnosed with thyroid disease….look at your family history…someone else may have it also. I am not sure if your procedure you had caused it….I think it goes back further than that and the procedure may have triggered it to rear it’s ugly head….

    You will survive this disease….just take the steps now to eat right, exercise, and relaxation techniques to keep you sane….and know that we speak today with great compassion as we too were diagnosed as depressed and a little crazy many times during this process….but if you hang with us….you will conquer this journey!!

    Good wishes to you… katie

  18. Rosemary says:

    Bless your heart. I have had a lot of the same issues over the years, even tho i was put on thryoid RX 23 years ago at age of 17. I still take meds for depression and anxiety as well as ADD – keep looking for a dr that will LISTEN to you. one of my best frens has been symptomatic of hypo for 5+ years…they finally found a goiter and are starting to treat her…keep looking!

  19. kitINstLOUIS says:

    Find a naturopath. They aren’t going to wait until your TSH is 10 to treat you, they’ve been better educated than the typical endo or family doctor (especially the older ones.) Tell us where you are, maybe we know of someone who can help.

    Yes, your TSH could be 3.9 and you still be very sick. You need to find out what your reverse T3 is, and definitely get both sets of autoimmune thyroid antibodies checked 1.)anti-TPO (for Hashi’s) and 2.)TSI(for Graves’)

    Did you get your frees checked?

    You are definitely not alone. And the psychiatric problems that complicate thyroid conditions can make it hard for your family to understand that it’s all part of the same physical problem. I would be glad to write them a letter once you’re diagnosed. I’m no medical expert, but I do have a local (St. Louis) Facebook support group. If you want to friend me, I’m Kit Kellison, and I’m glad to help anyway I can.

    I’m so sorry your folks aren’t being supportive. Let them know when you need help, they can’t possibly know what it’s like for you unless you tell them. But I understand how difficult it is when the people close to you prefer to think you’re a hypochondriac than give you the benefit of the doubt.

  20. DANIELLA1983 says:

    Hello everyone!
    I’m so sorry it’s taken me this long to get on here and respond. My computer is down and I just figured out how to aces the site and log in from my iPod.
    THANK YOU all for your posts they have brought tears to my eyes (who am I kidding I’m crying like a baby)
    I live in Ontario Canada for those of you that asked. I would like to respond to all of your questions. I am new to the site so bear with me do I respond by posting comments here? Is there another place where everyone chats?

    I must say this is one fab place and I’m glad I found you!!!

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