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Dear Thyroid, What – IS – WRONG – WITH – YOU?!
Dear Thyroid, Why can’t I find any Standardize Healthcare to abolish you?!
Why do I have to advocate my care, yet am expected to pay a Dr? Why do Docs act like they understand, when your gut knows better? Why do I walk out of the appointment feeling more frustrated? It’s like pulling teeth. I’ve never seen a brochure in any Dr. office with thyroid info. My Doctor said I shouldn’t believe what I read on the internet. Yet it was the Net that aided me in my descision to get checked out. Why are there many other symptoms that are only occasionally mentioned? I live in America, it’s 2012, so why all the secrets? Mary Shomon is a HUGE GIFT and I want to thank her for all that she has exposed. Thank-you MARY FROM THE BOTTOM OF MY HEART!
My brief story:
I had been feeling poorly for sometime with increasing symptoms over a period of several years. Under suspision after researching my symptoms online, my best friend and myself made an initial appointment with his GP with a request to check my Thyroid. They drew blood & a nurse called me the next day with the results. She told me I had an inactive thyroid & needed my pharmacy’s number to call my prescription in. The only instructions were to set up an appointment to check my levels in 6 weeks. Their bedside manner made me cringe!
That was in June of 2011. Knowing I would be returning, I did more research. Upon my 2nd appointment, I was armed with questions. They drew blood once again. I was having stomach problems. She sent me to a Gastroenterologist. Llong story short, I have a hiatial hernia. Followed by another call regarding my blood levels that led to an increase of my dosage.
Upon a 3rd appointment for levels, ironically my levels stayed the same despite feeling like crap. She recommeneded I go see a physchiatrist for depression. I was pissed. What do they expect… she too would feel depressed if she was in this situation. They don’t get it!
In between these appointments, I was referred to a chiropractor? I found this odd, but must say that the extensive questions, along with giving him permission to have the results of my blood work from the GP to save me money, plus he spent an hour with me during our initial appointment. He was the one that diagnosed me with Hasimoto’s. He wanted me to follow a fruit, vegtable & protein diet only, along with supplements. I never started the diet for the fact that these supplements, as he warned me may not make me very happy if I didn’t follow it precisely. I feared that, but I recently have been considering starting this diet if all else fails.
I decided to go see an endocrinologist because I was getting nowhere fast. Finally after a long wait list, I saw the endocrinologist at the end of March, 2012. She seemed in tune with my initial appointment. The doc ordered blood work and an ultrasound of my throat. The results, 3 weeks later, confirmed the Hasimoto’s and she wanted me to take the name brand Synthroid & increased the dose. I have 2 small nodules that I am expected to not worry about, her words. She kept nodding and telling me “I Know,” for every concern I voiced…. “I get it.” You hear these stories daily, but you really don’t get it. I know this, you don’t walk in my shoes. You hand me my prescription, smile in a happy mood & leave the room. You are beautiful, smart & happy, I get that, but I came for help and walked out feeling like a fly on the wall. I want to walk out feeling like you do. You rush me because you were 45 minutes late. I watched you walk in, you had to be buzzed in. I feel like I’m throwing money out the window, now my prescription costs are $85 for 3 months opposed to the $10 that I was paying. A drug addict has more options for help than someone with Thyroid Diesease, that we didn’t bring on ouselves, this simply makes no sense at all?
This thyroid crap is a viscous circle of evil. I can’t work because I am that ill, which means I have no health insurance, which leads to depression. I am running out of money. I used to thrive on being busy. People said I worked out too much. I was in great shape. I miss me! I miss my energy! To me this is like having a cancer with foggy options from practitioners. The choices that you make will hopefully make you feel better.
I have a new goal & mission. I want to challenge other Thyroid sufferers to start a standard list of “What to expect and the steps to take when diagnosed with any type of Thyroid condition”.
A blood level chart will be listed, too. Most people don’t know what the norm is. I hope that Doctors will help in this list. I hope that celebraties will follow suit. ***Please see below
I for one never knew the seriousness of a thyroid condition and I can speak for thousands of others. I want brochures in doctors offices with this info. I don’t want to play guessing games anymore.I don’t want anyone guessing and waiting anymore. The info is there yet vague. We need more precise detail on how to manage our thyroid health.
Along with the usual symtoms of fatigue, weight gain, foggy brain, hair loss, dry skin,brittle nails, aches & pains, etc., these pamphlet’s should include helpful advice regarding the following.
Diet- dairy free – gluten free?
Amor Vie Therapy – Iodine Intake Measurements
Has this affected your teeth, eyesight, your learning abilities?
I probably missed many topics, inputs are welcomed.
Communication is key in our health care to feel well again. I’m tired of reading so many different opinions amongst our health care practioners.I’m tired of them not joining forces per say to abolish or to help heal all who are suffering.
It is nothing but a confusing controversy to a foggy brain thyroid patient.
Thanks for taking the time to read!
Sincerely,
Rae K
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Resources from Mary Shomon, Coping with Thyroid Disease, Hashimoto’s vs Hypothyroidism, Living Well with Graves’ Disease & Hyperthyroidism, Thyroid Blood Tests, Getting Tested and Diagnosed and Key Thyroid Function Tests Lab Values and Interpretation.
Tags: becoming your own patient advocate, learning about thyroid disease, managing autoimmune diseases, thyroid patient frustrations, thyroid patient stories, thyroid treatment
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12 Responses to “Dear Thyroid, What – IS – WRONG – WITH – YOU?!”
Leave a Reply to D
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Unfortunately, there are too many of us who walk in your same shoes.
I have actually had doctors tell me that my symptoms are all in my head.
I finally had one doctor who would prescribe me Armour. I felt so great on it. Unfortunately, my job at the time changed insurance companies and he was no longer on my insurance. I was stuck going to another endo who put me back on Synthroid stating that Armour doesn’t work & has never been proven. The funny thing is that Armour has been around a lot longer then Synthroid. It’s just that the company that makes Armour isn’t a big player in the pharmaceutical market. So they don’t have all the marketing reps that can put a positive spin on their drugs and a negative spin on the others. And since they don’t have the marketing reps, they also don’t give the offices perks to prescribe the drugs. I know that they aren’t supposed to give major perks, but they find ways around it. I myself have worked in the medical field since the late 80s. I had to stop working as of last year because of my health. So I got to see first hand all the “incentives” the docs would get to prescribe this and that drug.
I have been through over 20 different endos in the 2 counties in my area. Most of them would say that my symptoms weren’t as bad as I was stating. Thankfully, I found a GP who believed me. He saw me deteriorate rapidly.
It has actually gotten to the point that I started having seizures if my thyroid numbers are out of whack. My TSH is routinely over 150. It is very difficult for me to get it lower then that on Synthroid. I even had one doctor try to trick my body into lowering the TSH by alternating doses of Synthroid every other day. The only thing that did was cause heart palpitations.
One thing I have never figured out is why Hashimoto’s & Grave’s are the ONLY autoimmune diseases where they don’t treat the immune system. They allow the immune system to run wild and only put a very small band-aid on the symptoms by giving Synthroid. I honestly feel that if they would slow down or stop the autoimmune attack, we would have at least some relief of symptoms.
I do know that I feel at my best if I can stay away from gluten completely. However, gluten free foods are extremely expensive & I have not been able to work for over a year now. I am fighting tooth and nail to get on disability because Hashimoto’s and hypothyroidism aren’t recognized as diseases that can cause you to become disabled if they get to bad.
I agree that things have to change. However, I don’t see too many celebrities jumping on the bandwagon since the majority of them can afford the gluten free diets. Their doctors will prescribe them whatever they want. So they are never left to suffer like the rest of us.
Rae, I love the idea of brochures for thyroid patients! I doubt very many doctors would allow them in their offices though – patients taking control of their own health and comparing notes?! Crazy, haha…
I agree with Norma above that it absolutely doesn’t make sense not to treat the immune system. There are many people, like myself, who go undiagnosed for years while the antibody levels are sky high! It’s just my little theory that the longer the body has to attack and destroy the gland, the more symptomatic you will be later regardless of TSH, etc. I’m wondering if those who are caught the earliest in the disease process are the people who seem to have the least amount of symptoms, and also are more likely to do fine on Synthroid alone?? Just a thought…
Anyway, there is at least one celebrity who has become quite a thyroid patient advocate – Gena Lee Nolin. You should check out her “Thyroid Sexy” FB page – lots of good info. and support among thyroid patients. Good luck to you, and everyone else with this awful disease!
I too suffer from Hashi – but I was lucky enough to find an endo that works with me. I am using a combination of Armor and Synthroid and although my numbers fluctuate wildly – the combo seems to keep me doing relatively okay. I’ve upped my anti=depressants to a major level since I need them and with that I’m doing well enough to work full time. I have bad days and good days but I know that I’ll get through the bad days – usually. It’s hard though – some days I fight to get out of bed. I never have enough sleep, my hair continues to fall out and my nails break if I look at them the wrong way… and don’t even get me started on my weight. I fake my energy level to get by at work, come home and collapse. I wish you luck finding a way to cope. Keep looking for a doc – you will find one you can connect with, I have faith. peace.
I totally understand your frustration. I recently was diagnosed with Hashimoto’s disease. I too was greatful that finally I now know why I feel so badly. I suspect that many of my issues are related to this disease. Such as severe hip and knee pain, increased LDL, dry skin, palpatations, foggy mind, gum disease, unexplained distorted toe nails, decreased libido, allergies, dark circles under my eyes, and rashes. The worst symptoms for me are being so exhausted in the morning that I don’t have the energy to even reach over and take my Synthoid. When I look in the mirror I see a stranger, a sad stranger. I’ve gained over fifty pounds, I feel so unattractive I am so depressed! Will I ever feel myself again? Why is it that my doctor thinks its o.k. to put me through this slow torture? Let’s remove my thyroid and put me on a dosage of Synthoid that works instead of having me feel like shit for six weeks until we meet again!!!
I am unable to work and soon will be going to a disability hearing. I heard this will not be easy but at this point I have no choice but to fight.
I am greatful to found this site and know that I am not alone.
Regards,
D
I’m a Certified Health Coach and was diagnosed with Hashimoto’s back in 2009. For the most part it’s under control… unless I “cheat” and eat gluten. Yes, there is a connection.
If you haven’t read “Why do I Still Have Thyroid Symptoms?” by Dr. Datis Kharrazian, I suggest you do. It outlines the connection between gluten and Hashimoto’s. In a nutshell, the gluten molecule looks very similar to the thyroid molecule. To our overactive immune systems (this is an autoimmune disorder, remember) the gluten gets misidentified as thyroid and so every time you eat gluten your thyroid gets attacked and a little more of it gets destroyed. Your antibody numbers go up.
By avoiding gluten you protect your thyroid from all of this damage. You invest in the future health of your thyroid. You make it so that you don’t end up having to take more and more thyroid medication.
In addition, many patients with Hashimoto’s are sensitive to the “beasty bits” (as my doc puts it) in Armour. This is why some people do better with a synthetic. However, not all do. Some are better on Armour because it contains both T4 (what synthroid contains) and T3 (what your body can actually use). If your body is having trouble converting T4 to T3, then taking a T4 only medication, such as synthroid, won’t help you!
My doc has me on a custom compounded T3/T4 combo that is synthetic. By using a custom compounded dose, she can give me exactly what I need of BOTH. Another thing we’ve done is put me on low dose naltrexone. In low doses (1.5-4.5 mg), naltrexone helps boost the immune system, which reduces my Hashi’s.
Hope these tidbits help – and DO read that book, both you and your doctor!
I have Hashi’s. Started having symptoms after a severe infection behind my left eye that lasted for about three weeks. It moved into my ear, down my neck, and into my glands. They did a scan(radiation exposure) to rule out tumor because of migraine lasting three weeks. It finally went away. A friend had a similar illness happen to her seven years earlier and she ended up with Hashimoto’s. About the same time, I had braces for the second time; went to an older ortho who had really old equipment. Wondering about radiation exposure. Around the same time I also had my tonsils out. Also we used to live in a really old house, just before this all began. We found the furnance had been leaking carbonmonoxide. I also took Metabolife for weight loss. Possible it runs in family, as well. I also have three children, which pregnancy can bring this on. It is no wonder I have this disease now, as many of things could have contributed to the onset.
It took me four years of pressuring doc to get an endo referral. I was started on synthetic, have been on for 5 years. For the most part, they keep me in the range but do nothing for symptoms. DEPRESSION, hair loss, elevated LDL (which led to Simvastatin and gallbladder removal), constipation, weight gain, mental fog, dizziness, sleepiness, fatigue, no energy, lethargy, irratibility, anti-social behavior, low libido, elevated sugar levels, heaviness in limbs, tingling in feet, aches and pains.
My regular doc has run so many tests and ruled out anything else. She says it is the thyroid. My endo keeps saying I am in the range so I should be fine. Every symptom I throw at him, he has some flip excuse for what can be causing it. I have heard that this all the HMO’s will do for you–they will not try to treat it any other way. He said I had to go to mental health.
Mental health has been a nightmare. First antidepressant was horrible. Then put on Wellbutrin. It was horrible–triggered insomnia and severe anxiety like I have never had. In researhing and talking to pharm, some people can not take antidepressants or anti-anxiety meds. It is almost like an allergic reaction. So now what? I found some research that people were treated with low dose prozac, d-amphetamin, and something for sleep. I will have this disease for the rest of my life, which means being on these prescriptions for life. Cost is an issue, not to mention being on a controlled substance for life. Then there aren’t any gaurantees that there won’t be side effects from all this. I have been feeling pretty depressed at the thought of facing this for the rest of my life. It is difficult to work a full-time job. I work four hours a day and this takes everything I’ve got. I don’t have much left for my kids–16, 14, and 12. Three kids are very expensive and so is college. My husband is a public school teacher. It is very rough. Feeling very hopeless at this point.
Kim, balancing out your TSH doesn’t actually treat Hashi’s, which is an autoimmune disorder.
If you haven’t read the book I mentioned in my comment above yours (“Why Do I Still Have Thyroid Symptoms? When my test results are normal” by Datis Kharrazian), I highly recommend it. In it, he explains exactly what’s going on with your thyroid and how it needs to be treated when you have Hashimoto’s.
First and foremost, you MUST remove gluten from your diet. Just doing that alone could control many of the symptoms you’re talking about!
Second, you may want to talk to your doctor about trying Armour thyroid instead of a synthetic (or a combo of T3/T4 synthetics). Armour thyroid has been proven in studies to be more effective than many antidepressants for depression. Interesting, eh? =) You do not necessarily need to go on something like prozac if the problem is with your thyroid!
Just because your TSH number is within range doesn’t mean that the rest of your thyroid numbers are correct. For instance, you might not be converting T4 to useable T3, or any number of other issues.
If you have any questions and want to chat, I’d be more than happy to fill you in on my journey and what I’ve learned. <3
Hugs and empathy for my fellow Hashi’s!
Rae,
I understand what you are going through. I was just recently diagnosed with Hashi’s. I started reading a book called “Hope for Hashimoto’s” by Dr. Alexander Haskell. I have not finished it, but it does touch on some natural ways to battle the disease. Best of luck and keep your chin up, there are a lot of wonderful resources on the internet.
Hello All
I want to give you all some words of encouragement. This disease if very tough, but you have to try and musturd up some hope. I was diagnoised in August of 2011. At first I didn’t know what it was. Then I became so ill I wanted to commit suicide. I would go from doctor to doctor with no help. They to would give me a pill for thyroid, then depression, then nerve pain, and I could go on and on. I then began to pray and ask God for help and He did. We live in a society where people don’t care, are to busy, or they just don’t know what we are going through and I’m glad they don’t. But I decided to put my trust in God. He cares. I decided that I would try and educate myself but not with hopeless situations. My sister has Hashi’s and you would think that she did’nt. She is doing good. The first key to Hashi’s is attitude. Believe that you will get better and live like it. I get up and get dressed. I do my hair and kiss my girls and my hubbie. Listen, your life is not over. It is ok. We will get through this. Is it hard? Absolutly. I am in pain right now typing this post. But this to shall pass. God says “just believe”. I know that everyone does’nt believe in God, but I encourage you to wake up in the morning, thank God for life, then look at all the good that you have in your life. Don’t let this illness trick you into thinking that you won’t get better. You can and you will. Live people. I know it’s hard, but it is possible. Hang in there and find people who can encourage you every day. My sister is my hope. She is doing great with Hashi’s and she is not glutten free, she hates veggies (which I am working on her) and she is living. The worst we can do with this disease is to feel hopeless which inducess stress, which weakens the immuned system. If you believe, you will begin to heal. Don’t get me wrong, do all you can to be proactive about your health. Take glutten out, eat more healthy. All of this plays a huge role on getting better. One last word of advice, don’t go to the doctor thinking they are gonna have time to care about you. That is not there job. You care about you. You just use them to do there job, which is labs and meds. That is all they do. If you are lucky to find someone who cares praise God. But if you don’t, you care about you. And no that there are many people who are living good with Hashi’s and so can you if you believe. I am praying for all who reads this that you will heal well. We will make it.
I was just diagnosed with hyperthyroidism yesterday. I can totally relate to the lack of bedside manner. I was told my prescription was called in to my pharmacist and that was it. No care instructions. No foods I should eat or avoid. Just a prescription for methimazole and instructions to come back in two months for a blood draw. Hyper is so rare where I live that my pharmacist has to order the medication and I can’t start until Monday. I’m feeling a little lost here as I try to gobble up as much info as I can as I try to ease my pounding heart … which is how I came across your blog. I’m adding it to my favorites.
This is my first visit, I’m just beginning to look into thyroid. I listened to a webinar this week by David Brownstein, MD, (abbrev, DB) about thyroid disease; it was an online seminar sponsored by a nutritional products company (he isn’t my doctor). My thyroid values were subclinical about a year ago so my doctor said, no treatment necessary; Dr. DB says he does treat subclinical findings. I’m commenting b/c I wondered when I read comments about improvement with treatment but not total improvement (e.g., some lingering symptoms), if the iodine level is okay…this was on my mind b/c of what DB said, that he doesn’t focus on T levels w/o also focusing on iodine b/c when the thyroid starts functioning with treatment, iodine, if not sufficient, will go into further deficiency (my paraphrase of what I remember). I got the sense that if iodine is deficient and is treated along with the T levels and BOTH are treated sufficiently, that symptoms will clear considerably. My symptoms that I believe might be thyroid related–the ones that I can see, b/c I don’t know what might be happening unseen like heart effects, are low level depression, headache upon awakening (when a h/a occurs), and always, always lack of morning oomph…& oh, I almost forgot, nano brain focus (an ADD/ADHD similarity). (I was excited to read Tami’s point above about T3 not converting to T4 for some people, thus a compounded formula of T3 and T4 bypasses that problem, b/c I remember that point from the class this week.) I’m looking forward to feeling “top of the morning” someday and to not being scattered!!, and to not having symptoms that my body has adapted to that I probably don’t notice now, but when gone, I’ll be amazed that I put up with them for so long. Ah, don’t I sound hopeful? That boost for me is to your credit DearThyroid, thanks for the forum. I hope the iodine wondering helps someone. Now, back to my attempts to point the dish to the proper satellite for internet connectivity before it gets dark. Tree limb hit the dish. Life goes on! Hey, speaking of dark, a nice lift is to take a lounge chair outside, load up Droid Sky on a smartphone (a neighbor’s maybe?)–it’s an Android app by Rock Creek Studios, and look at the planets, stars, constellations, etc. on the phone screen. There are apps for looking at satellites too… not as much of a lift…the sky is like an expressway at rush hour for those. I like the sight of God’s handiwork better. (Oh, add to symptoms, a problem with transitioning in tasks! LOL. Gotta go. Best regards.)