Dear Thyroid^TM

Doctors, endocrinologists, integrative specialists, only those that don’t work with their patients; wake up! Your patients are more than the sum of their numbers. Regardless of what they try; many of them still have glaringly thyroid related symptoms. Your magic pills aren’t working for every patient. Start practicing medicine, figure out why your patients are struggling and why they aren’t achieving wellness. Stop pawning your patients off on other doctors (for thyroid symptoms) and do a little research. Really, it won’t kill you. That’s why you’re a friggin doctor.

Below, are some very brave patients speaking up about their symptoms and issues. I suggest you read this in its entirety and do something about it. Because if you don’t, we’re not going to stop speaking out about our respective illnesses. We will not give up. We will continue to fight and ensure that we get the treatment we so rightfully deserve. I’m just sayin’.

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Dawnalive I have to partially re-pierce my ears every now and then. They close up easy.

HDinOregon Does having had a thyroidtectomy cause excessive rains in Oregon? Are there statistics to that effect? Growing webbed toes

aimlessaimers mine’s not very rant-ish. More whiny. I’m cold & can’t get warm even in hot shower. That’s all. not very ranty.

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Kaytee Sumida I’ve been very achy for the past few days, and yesterday had an “off and on” migraine for most of the day. Not sure if it’s exactly “thyroid related”, but I did start DIM on Tues, and progesterone cream yesterday morning. These were recommended as a way to “balance” estrogen dominance, which may be why I have hypothyroid signs/sx in the presence of normal lab results and minimal response to thyroid rx. Hopefully, this is just a “clearing” that needs to happen so improvements can be made; I was told it usually takes 10 days to 2 weeks before there are any noticeable results, and about 3 months before any significant changes

Anna M. Holyst-Sourile My balance is off and i was freeeeeezing last night which actually brought our Raynaud’s – love having purple fingers yeay!!! If they only oozed purple paint – NOW THAT would be cool.

Tina Golding- Conklin Dr. lowered my meds a couple weeks ago. I went in to see him today because I feel like sh*t, he blew me off. Its like he wasnt listening to me, I am so frustrated and tired of feeling like this. He is usually a great dr. I hate this thyroid crap.

Lori Caprio Callahan Thyrant here I come…my thyroid supposedly looks normal but it’s so far from normal. I was painfully reminded this week how sick that little thysucking gland still is.  You let me down big time this week. I needed you more than ever and you said fuck you to me, but I will forgive you and be good to us this weekend with a massage and reflexology, and a trip to the bead store. I still have to work this weekend but if I don’t take care of me, you will continue to stomp on me and I’m not backing down from this fight. Hope you heard me because I mean it! Fuck you, right back atcha!

Amy Elizabeth Parker I got some thyroid labs and blood sugar labs done this week….seeing my Dr. on Monday. Hoping all is well! Can never be too careful when pregnant or otherwise, really!!!

Anita Roberts well, i’ve had an interesting week. last weekend i started on my new drug, plaquenil. i did everything i could to avoid it, but the RA just won’t remit or go away. slowly over the last 5 months my joints have begun to worsen, so i went ahead with it. a few days later, i got my erfa thyroid meds from canada. wow. suddenly i have energy and a slight lessening of joint issues. in fact, i had one day on wednesday with no limp. i’m waling miles every day now. nice. brain fog clearing, eyes de=puffed, sleeping better. no naps, and go go go all day-all week!!! well, yesterday i sort of hit the wall and the joints were really sore and stiff again. and i forgot to take the plaq. but, it’s all good. i can see that this combo will work. my voice is lower tho and throat a bit swollen. will have labwork for thyroid done in a month to see how new meds are affecting the ‘roid. other than that, i think it’s gonna be an interesting summer…

Anna M. Holyst-Sourile Yes my hair is still falling out – ughhhhhh! Ok maybe morrow i’ll look at cool wigs!  (Happy Thoughts)

Joanna Isbill So very grateful for all the awesome sleep I’ve gotten this week. **dripping with sarcasm**

Elizabeth Campbell I feel fat and I have another sinus infection.

Elaine Apodaca-Martinez My eye is acting up again. I thought I was done with my TED business. My bottom lower left eyelid had been flipping inward. An attached lash embedded itself into my eyeball. I had a bubble on the side of my eyeball and headaches and did not know why. Thankfully after the doc removed it and gave me meds it is going down. Who would have thought. Lids turning inward…………..what next???????

Kathleen Taylor Just this week diagnosed with COPD. Now, I’m not blaming you, thyroid..however the fact that you make me need the Levothyroxine, and THAT can contribute to my breathing problems is not helping me any! I hate taking meds! How many more can I juggle?! This is interrupting my sleep along with the apnea you’ve had a hand in bringing on. Don’t worry though..I’ve got it covered. I’ll get that sexy CPAP next week. Maybe when I want to get romantic, I’ll put some lace on it..thanks!

JT false memories. I have a thought – like “I’m going to leave my keys in the ignition, so I don’t lose them” and this thought will make a memory that I did leave my keys in the ignition. However, I will then forget to leave my keys in the ignition and then I just fall back on this very real memory that I did, which leaves me hopelessly confused and frustrated. WHERE THE HELL ARE MY KEYS??? If I can’t trust my own memories, then what good are they?

Elaine Bastajian You mean it’s not just MY brain that’s wacky?

A D Blackadar I had a thought this morning. I’ve never thought of myself as having a thyroid ‘disease.’ More like a ‘disorder’ or ‘condition,’ but never ‘disease.’ So on a lark I googled hypothyroidism definition, just to see what would come up. Most of the time it was defined as a ‘deficiency,’ ‘condition’ or ‘disorder.’ Seldom was it called ‘disease’ (Hashimotos, Graves and thyroid cancer excluded, of course). For what it’s worth, Wikipedia actually referred to hypothyroidism as a disease. Words have meaning, and I found myself wondering if perhaps the reason why more people don’t take this seriously is because it isn’t really considered an illness or disease in the arena of public perception. It’s taken forever for alcoholism and depression to be considered diseases, and sufferers still find themselves the target of misinformation and stigma. There are still people out there who think depressed people or alcoholics bring it upon themselves somehow, as a result of a character defect. Unfortunately that also seems to be the attitude thrown at many of us who wrestle with our thyroids (e.g. metabolism has nothing to do with weight gain, we’re just fat, lazy (pre)menopausal hypochondriacs).  Just some food for thought.

Lauren Cosh I just feel so so ill and so depressed. Just dont know what to do.Ive had Graves for years, had RAI a year ago was severely Hypo. I am in normal range but my blood tests change every week…. plus i have low ferrtin 18 and low serum Iron of 7. My new integrated Dr has diagnosed me as Clinically HYPO, adrenal fatigue, insulin resistant, poss PCOSand IBS plus I get migraines. Im lying down all day and even that dosnt help. Will I ever feel normal, happy energetic with no anxiety and feeling severly weak and ill. It never ends… feel like gving up. MY only hope left is that may be starting on whole thyroid next week. Any advice or suggestions would be appreciated, thanks alot.

Linda Barton Reed My current rant: I am just so tired of feeling like crap 90% of the time. My mind has so many wonderful ideas and things I would like to do/accomplish, but my body will not have it. Most days I just want to crawl in the bed and shut out the world, even though I know how truly blessed I am. I don’t even like myself when I feel this way! I’m on meds, but apparently not the right amount. Plus, I started having new symptoms like dizziness, shakiness, achiness- especially legs and ankles, and feeling excessively tired, but wired- hard to get to sleep- at the same time. Thankful my dr. appt is coming up. I have to get some relief! If this dr. can’t help me, I’ll just have to find one who will. My daily “pep talks” to even get small things accomplished are helpful, but not near enough. Sometimes I feel so conflicted between my head and body that I don’t even feel like the same person. That is scary and very unnerving. Just knowing others understand really helps a lot, though! So, I’ll press on the best I can and take it a day/hour at a time until I see the light at the end of a very long, depressing tunnel! At least the sun is out today- that helps!

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Thyrant:  I would like a little consistency with the info that my doctors give me!!!  One month they tell me that I am doing so well I’ll be in remission by the next appointment; at the next appointment they’re all doom and gloom about how if my number don’t improve they’re going to remove/kill my thyroid!  A month later they’re back to good news and another month after that it’s bad news.  Doctors: do not give me false hope!  I feed off good news so when a month later you rip it away from me I am double-y upset.  If you don’t know where my numbers are going to do, just say you don’t know!  I can take the ambiguity, I just can’t take the roller coaster!!!! ~ natasha

Thank you all for your bravery and beautiful rants; every one of them is important.

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(Written by Sharen, Thyroid Patient)

Dear Thyroid,

Happy New Year. You and I have finally WON! Well, let’s say we’ve won the first step, and that is finally getting the insurance company to open their eyes. Not sure if it was my patient call, or the medical bills or the doctor’s office finally calling to let them know that the generics are not accepted in my body. Anyway, I received a call today to let me know that they are letting me take the correct medication for one year.

Dear Thyroid,

Well, two days have passed so I called the pharmacy, and—yep!—they are saying that the insurance company will not process the medication. So I called the insurance company back, and they are stating that the pharmacy did not call them. So, they will call the pharmacy back, then me.

Dear Thyroid,

Another day has passed and so far not a call from anyone. The pharmacy states that the insurance company didn’t call, so I will call the insurance company. Called the insurance company and the lady suggested that I stay on line while she talks with the pharmacy. She called them, then she talked with me, stating that the pharmacy was lying and that the medication will go through at a certain dosage only per pill.

Dear Thyroid,

Well, another day has gone by and I am still fighting with the pharmacy and now the doctor’s office. How hard is it to understand that the pill can only be 25, not 50! Finally, after 4 HOURS, I’m able to pick up the right dosage and the insurance company is paying.

Dear Thyroid!

Oh Good Grief! I stopped at the pharmacy and they have not even started to work on the prescription. Then they state they do not have the full amount, that I will have to come back sometime next week. They also stated that none of this was their fault.

Dear Thyroid,

I am back on the right medication, and I am feeling better. The thyfog is less and the thyblindness has eased as well. The thought of seeing the doctor in March is not high on my list. I have kept record of all the running around that has been done due to her people and herself and I feel she needs to know that this is not the way people should be taken care of.

But I won, ONE battle, and maybe because of this victory, others will be able to fight and win as well.

So, OK Thyroid! Wakee….Wakeee….

Sharen

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ABluePearl #ThyRant! what the HELL is up with the itchy, flaky scalp?! I’m SURE it must look like a plowed field from all the scratching!

Marya Leaich Many times when I come here, I end up ranting. Today, I would like to say something positive just so that I can feel good about something. I think we can often get into the rut of ranting and forgetting the good things in life. Positive today: I saw the sun shining, my husband told me he loved me at least 4 times today, I am alive, and though I am not feeling my best today, I know that a lot of worse things could be going on in my life right now

Hans-Dieter Honscheid Thyroid symptoms are bad enough alone, add a common cold and you really feel miserable.

Stephanie Lawton Got back my test results. I’m still hyper, which I knew, but since I have cancer, they want my TSH levels suppressed, so I have to keep feeling pretty lousy and not sleeping, you know, forever. Kind of depressed about it obviously.

Ruth Garcia I need to rant. This is so not fair. I just spent 50 bucks on medicine so I can feel somewhat normal! Am I expected to do this for the rest of my life??? We go through crappy doctors that tell us we’re fine when we very much don’t feel close to fine. Then if we are lucky enough to find a dr that will listen and prescribe natural thyroid hormone the pharmaceutical company decides to stop making it. Then if we find a pharmacy that will compound it for us our insurance doesn’t cover it! WTF??? Why can’t a thyrollicious girl get ahead?

Regina Cintron Hair on the ground, hair on the ground. I could make a wig wit all my hair that’s on the ground! Let’s adjust my meds… AGAIN! It’s been over a year now!

Marie Poling I’m afraid I may be setting myself up for failure. I have signed up for grad school. It’s a distance program so most of the time I can stay home, which is what I do anyway. Unfortunately, I have a week long residency ahead of me with all day classes. The food available is Marriott. I talked to them and the only thing I can have is their meat (I didn’t list factory farm meat as a limitation, bleah!) No way. So I’ll be juggling classes with having to try and cook for myself. Even when my conditions are optimal, I get so weak and so tired so quickly. I’m terrified that I’ve made a terrible decision but I want so badly to move on with my life. I don’t want to be at thyroid prisoner! Wish me luck!

Melanie Genot That doctors don’t take the time to listen or care when it’s about your thyroid.

April Frandsen-Mateus I am tired of being tired! I’m 34 and feel like I’m 50! I have been hypothyroid for 10 years! My meds were uped 3 months ago from synthroid 112 to Levoxyl 150! In hopes of shrinking a 3cm nodule on my thyroid (which did not work)! Now my dr gave me 3 choices.

1: ignore it
2: biopsy
3: surgery
One is not an option! And he could not tell me which of the other choices was better for me! All of this is adding to the fatigue! I am a wife and mother of three who teaches kindergarten! I don’t have time for TIRED!

Gina Kinderdine Elson Oh, April, I am in the same boat with you, same levels, teach 5th grade and 2 kids..add in husband who likes the house cleaner than what I can get it. being frustrated makes me tired too

Elaine Bastajian I am so tired of being tired and I don’t even have a husband and kids to worry about! You ladies are Troopers!!!  I did take care of my elderly father back in the mid to late 90s, so I do understand a little of what you are going through. My dad, bless his heart, was like the child I never had.  I’m also tired of being cold!!! I’ve been going through this for 20 years~~I’ll be 60 in July and feel like I’m 80 :~(

Sherrie Osterman I just went for bloodwork, and my doctor is only testing my t4 level, what is with that? Why wouldn’t he test both my t3 and my t4 level? I think it’s time he sends me to an endocrenologist. The one in his practice does not specialize in thryoid problems, only on diabetes. Will not see patients for thyroid issues. This practice has over 40 doctors, in all different kinds of specialties. This is one of the specialties that they don’t have, and I do not think that our small suburb does not have one, so I may have to travel 100 miles one way to see one. My results will be back tomorrow. If he tells me that my t4 is above a 2, and he says that is ‘normal’ we’re going to have ‘words’.

Elaine Bastajian OK, I’ll rant. After I had my thyroidectomy 20 years ago, my doctors told me I’d be “fine”, but they lied to me :~/ Cancer free, yes, but feeling “normal”, a big NO!!!

Sandy Plant O’Donnell I’ll rave. I’m feeling good. It’s such a treasure to feel normal again! Thank you NT for coming back on the market, thank you my primary care doc for listening to me and letting my tsh stay low low low and thank you to all the web resources that taught me how to fight for what makes me feel good and also the web resources that taught me how to eat healthier.

Kaytee Sumida For me, the “routine” thyroid test always has just been TSH level. If that is “normal”, the rest aren’t done unless the dr specifically orders them, AND they are not ordered along with “routine” bloodwork…. I had to have blood drawn twice for my last dr visit– even though the FreeT3 and T4 were ordered (because I’m on thyroid meds), they were not done the first time because it was for a routine physical.

Cyndi Potts Woodruff I went to my endo on the 1st. He raised my Levoxyl back up to 175mcg and I will still take my Cytomel twice a day. Sp, let’s see if this will help. I’m so over how I’ve been feeling lately.

Sherrie Osterman I am going to post my blood test results here and I please want opinions as to whether or not they are ‘healthy’. Ladies I need your help. I owe my girlfriend for finding this group, she had thyroid cancer.

Kelsey Newman Lauder uugg. I felt so great on natural thyroid for 3 days ( i just tried it..then I think went hyper for a few days, lowered my dose..now I’m tired again!! But at least I’m happy I found that natural thyroid works much better for me than synthroid..just have to find the right dose!!

Larissa Askew I had to wait to see my Endo Dr for 3 hrs only for him to tell me. That I should have just gotten my blood taken last week and I need to see him in May.

Amy Elizabeth Parker My throat hurts, not like a sore throat but, like my thyroid hurts. And seem to pull a ton of hair out of my brush every morning. I think I should call my Dr. She usually doesn’t check levels until the end of the first trimester(6 more weeks). I just want to be on top of things. What do you guys think?

Angel Strecker sometimes….I just don’t have the energy to care!!!!

Nikki Hundt Prohaska What does a thyroid really do? I asked myself about 7 years ago, this all in my head – while I watched the last breaths of air leaving my father’s body as he was now dying of cancer. I was consumed by insane questions flooding my head as I was watching him die, as I was diagnosed with Graves disease – (after a bogus TSH test came positive) – the day before he passed.  That’s right! – NOT the TSI Graves antibody testing that CONFIRMS you have autoimmune disease – but the lousy, stupid, shitty TSH – so many have come to hate!  Not saying Goodbye to him right, to mend my soul to let go and to go on myself – but thyroid fears overtaking me is something I have now for life.

Stacey Barrett Just started taking Desicated Thyroid & Iron on Monday. Feel great, the iron is causing some gas n stomach stuff, but nothing too extreme. The Thybloat is diminishing from my abdomen very quickly. High energy, carpal tunnel symptoms gone, feeling a little randy (woo hoo)…really good. One question. I am feeling a little foggy behind my eyes & still have thyroid foggy brain…I am on only 1 grain/60 mg for the first two weeks…is this normal, any ideas? I dont want to bring this concern to my Dr as I am afraid she will take me off the Thyroid and put me back on Synthroid only.

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Flying With Broken Wings by Sarah Downing goes live today, too. She’s discussing relationships, thyroid issues, sexual issues and much more! Stay tuned.

Great rants. Please share yours in comments and respond – These are our thyeeps.

Check out these fabulous patient rants, all great; some sad, angry and funny, always honest. Care to share yours? Post in comments. We also publish Thyrants every Saturday morning.

Faith Gaspare coughing,pain below waist The agony…

Linda Barton Reed My current rant- Tired of constantly struggling to just function when I really want to exceed! My mind has so many wonderful ideas of things I would like to accomplish and experience, but my body screams “Good grief-are you crazy…NO” and prevents me about 90% of the time.

Joni Canfield awlful, caught something, head hurts, throat hurts, add to all the usually stuff, just is going to make for one bad day again.

Lori Graham Atkinson Thyroid: Is my cold never going to go away? Is this your fault? I tend to blame a lot of things on you, so if I am off, just let me know. Everyone else had a cold for 3 days. I have had one for 2 weeks. grrrr

Aimee Gilmore thyrant for today:: why, why I ask, is it necessary for me to bust my everloving tail to lose 1 or so pounds.. when I USED to not worry about it at all.. and why has my self esteem gone to hell too??

Sarah Downing Another bloody fungus. Why me thyroid?

Rebekah McAlinden Thyroid! You’ve been treating me ever so marvellously for the last few months. Now I’m down again with that horrid tired feeling and a nasty cold that I can’t shake. Go screw yourself please. Excellent.

Lolly: I don’t know what it’s like in other countries but here in the UK the labs/technicians seem to be the new Doctors, Endocriminologist’s who say what test can be done even though they have been requested on lab forms by Endo’s and GP’s and get this also inform your GP on your lab results that you are on adequate replacement when clearly you are not.. like in my case today call for my results My GP calls me back relays the results including numbers and say adequate replacement well I am clearly hyper as my FT4 is out of range FT3 has still to come back from private labs. It pisses me off each time but with a cool head and a foggy brain I say well as I am out of range and Hyper do you think it would be okay for me to reduce by 25 mcg as i am taking an alternating dose he is happy with that but how many poor uneducated or trust the labs and Doctors fucking word for it, carry on and end up in an even worse state For fuck sake who is the Dr. here labs or Doc can he not think for himself can he not see that I am out of range are they looking just at the fucking TSH which is in range but heading low. I am so used to doing this but each time I want to scream down the fucking phone and say for fuck sake doc can’t you interpret thyroid labs for yourself ( I did scream at him once must have thought I was some neurotic women i said I had enough of the roller coast ride he had me On and wanted to be referred he did and I am now with an endo who still on trial  jury is still out on this one.

Katie Schwartz Graves’ Eye Doctor, my lady balls are in remission, seriously?! When your eyelids topple your man balls, your vision is blurry and you can’t be indoors or outdoors without sunglasses, you tell me if your G-fucking-O is in remission?! I hate you. I hate you. I hate you.

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