Several years ago a Hypothyroid Mom reader contacted me with a letter that she wrote to her family. She asked me to keep it anonymous. It turned out to be a letter that resonated with so many of my followers that I invited her back again to give us an update. This letter to herself is inspiring and incredibly beautiful, exactly what we all need on our worst of days.
Written by “Anonymous Thyroid Warrior”
A Letter to Myself
I originally wrote the Hypothyroidism: An Open Letter to My Family post on Hypothyroid Mom just over 3 years ago. It was a really bad day, and I just sat down and started to type all of the feelings that were bottling up and making me feel even sicker. Fast forward 3 and a bit years, and so much has changed, I don’t even know where to begin. So, with a racing mind, here I sit, typing again, writing a letter to myself. To remember where I started, and where I am now.
Overall, my life has transformed in many ways. My boys are growing up quickly; one off to university in the fall, the other still finding his way in high school. The bigger question, did the letter work? It did! I didn’t force anyone to read it, I simply told them that I had written something and it was very important to me that they read it and understand the words, absorb the words that I had penned. They were truly shocked. They knew I wasn’t well, but didn’t truly grasp the entire concept of hypothyroidism and Hashimoto’s. In large part, I wanted my boys to understand what could potentially become their reality as Hashimoto’s is often genetically inherited as was the case with me. After reading it, they didn’t apologize, I wasn’t looking for apologies, they understood as best they could. They can look at my face, watch my body movements and they tell me to go have a nap while they do the chores!
I did have to give up my evening job, but that’s a whole other story that I will get to, and a very important story to tell. However, I’m still going strong at my full time job, and maintaining this crazy life we lead. I still take naps, but hey, that’s part of taking good care of myself with this chronic illness. I try to keep my naps to a maximum of one hour per day. Some days are longer, some are shorter, and some I can fight through with none at all. I set aside one weekend day where I can sleep in and take my time doing what needs to be done around the house, but more importantly what I need to do for myself. Self care, self love and positivity will be the key to maintaining my warrior status!
My numbers are all over the map as I grow older. I flip between hypo and hyper, but in general, I do feel better overall. Along with my cocktail of drugs, I’ve added some B12 and am really trying to cut down on the caffeine and replace it with good old fashioned water. We eat one vegetarian meal a week, and I do try to eat healthy carbs. I work closely with my family doctor, who is absolutely amazing and with his help, we always find a solution to whatever it may be that crops up. The latest, Reynaud’s disease. A very common phenomenon that affects many people with autoimmune thyroid disease. Typically affecting the hands and feet (but certainly not limited to), the nerve endings spasm and temporarily block blood flow in my fingers on those really cold Canadian days. I won’t lie, it’s really creepy to see your fingers turn pure white and lose all feeling. I had to laugh when my doctor sent me out to buy the warmest, thickest mittens I could find, with instructions on how to effectively wear them. I felt like I was five years old but had fun shopping for them!
So why did I leave my little evening job? In June 2018 my youngest was graduating from elementary school. Here I was, on the parent committee, rushing off to meetings, decorating the gym, jumping up and down to hang things, climbing ladders, and the entire time, I just wanted to curl up into a little ball in the corner, have a nap and nurse what I thought was a Charlie horse in my right calf. I muddled through until the pain worsened to the point that I could barely walk. One day, bringing my laundry downstairs, my leg went numb, gave out, and I tumbled top to bottom. The laundry stayed in the basket though! Thank goodness, we do have a carpeted basement to cushion the fall. My youngest was playing downstairs, helped me up and demanded that I go to the doctor because as he said, “This ain’t no Charlie horse, Mom.”
Turns out it wasn’t. You see, I had been taking estrogen to try to regulate my cycles because they were so erratic. I knew the warnings, I researched them, my doctor warned me there would come a time I would have to stop and just deal with it for my own safety. It was too late. I had developed a DVT deep venous thrombosis in my right leg…one in a million chance, and I was that lucky one. Turns out there is also an increased prevalence of hypothyroidism in patients with DVT. Unfortunately, because I had hobbled around for over 2 weeks like this, the main veins in my leg were fully blocked, my nerves permanently damaged and my veins basically mangled. After nearly 8 months of very potent blood thinners the team of doctors treating me decided that my body would naturally absorb what remained of the clots. Sadly, this left me with PTS (post-thrombotic syndrome) which is irreversible. Some days are good, others my leg looks like a balloon, tingles, I can’t walk well, but since I can’t change it, I’ll take it for what it is and be extremely grateful it wasn’t any worse. My son tells me to this day that falling down those stairs was the best thing that has ever happened to me.
How else has my life changed? The summer after I wrote the letter to my family, my father was diagnosed with an incurable and very rare blood cancer, basically a death sentence. That was over 2 years ago. He too is hypothyroid with Hashimoto’s, and guess what, he’s kicking his hypothyroidism AND his cancer in the behind! He knows that there is no cure, only management, and only a matter of time. BUT, he gets up every day, smiles when he feels good and makes the most of what time he has. He is my hero! Here I thought I was a warrior, not even close in comparison to what he lives through. This cancer generally causes a stroke or heart attack, and that is how your story ends. Imagine going to bed every night not knowing if you will wake up? He is an inspiration to me. He taught me how to self love, to self care, and to know when it’s simply time to sit down and rest. I have some pretty serious OCD issues and I’m slowly letting go of them. It’s not easy, but I keep thinking of my father, myself, my kids, my husband, my mother and all of those who love me and I keep on going no matter how crappy I feel and I won’t complain. I have a hero to be brave for!
It sucks. I know it does right! BUT – the power of positivity, of letting go, of persisting, persevering, will get me through this journey AND let me live the best life possible. I did this crazy little thing just before Christmas. Something I said I would never, ever, ever do! I started to believe that positivity “crap” really did work, better than any medicine, any supplement I’ve ever taken. So I took the plunge and I did this special thing, just for me, it’s mine, I own it, I didn’t even tell anyone I was doing it, I just took off out the door one day, hopped in my car (literally) and did it! If you believe, anything is possible, even on the worst of days, some glimmer of hope, the smallest bit of positive energy, a small milestone….well those all add up. So keep on adding those little things, and never, ever stop believing in yourself! You are beautiful, you are strong, you ARE a warrior!
Much love, from ME!
xoxo
About Dana Trentini
I’ve been battling reflux, burning esophagus, vomiting bile, severe diarrhea, mood swings, massive hair loss, and a prolapsed Uterus. I’m tired of my primary MD putting band aids on these serious issues that impact my life negatively.
I’m working 4 days a week, with Tuesday’s off. Cramming MD appointments in when possible. The meds aren’t helping my reflux or my well being. Unfortunately, I’ve never been tested for hypothyroidism. I’ll be 68 years old in December.
Why hasn’t my MD tested, treated, and prescribed
the necessary medication?
I’ve been battling reflux, burning esophagus, vomiting bile, severe diarrhea, mood swings, massive hair loss, and a prolapsed Uterus. I’m tired of my primary MD putting band aids on these serious issues that impact my life negatively.
I’m working 4 days a week, with Tuesday’s off. Cramming MD appointments in when possible. The meds aren’t helping my reflux or my well being. Unfortunately, I’ve never been tested for hypothyroidism. I’ll be 68 years old in December.
Why hasn’t any of my primary care, gynecologists
taken the time to discuss, diagnosis, or treat me with the necessary medication?
Hi Mary, While not everything is due to a thyroid problem, given that you have a number of potential signs of thyroid dysfunction, it is important for you to have full thyroid testing to be sure. Here in this article you’ll find a chart of the 6 key hypothyroidism lab tests to request: https://hypothyroidmom.com/top-5-reasons-doctors-fail-to-diagnose-hypothyroidism/
Good to have you at Hypothyroid Mom.
You could have hyperthyroidism. O started hypo and it went undiagnosed for decades and developed nodules on both sides of my thryoid. Which started to become overactive on one side. I have/had all the symptoms you mentioned. My MD put me on methmazole 10 mg/day. I take it at night before bed. What was happening to me was my body was stuck in the flight or fight response. This medication helps tremendously with that.
They also wanted to kill off the rest of my thryoid and put me on some other mess but I refused. I opted with this med and this one only. Im just relieved it worked. I am not going to kill off my thryoid and be on a pill for the rest of my life. I will try supplements first. If your doctor (and mine is a endocrinologist) wants to do something as thryoid ablation from 1 televisit with you ( like mine wanted). I would not go with their suggestion without doing more research. Its ok to say no. If you have turned hyperthyroidism the meds your on are going to make it worse.
hey! i’ve been having ALLL of the Hashimotos symptoms for over a year now, from 30 lb weight gain in less than 2 months, chronic fatigue, Raynaud’s phenomenon, decrease in blood pressure, chronic constipation, extreme EXTREME bloating, etc. i just got my diagnosis in early February n i was healthy prior to my diagnosis, but i stepped up my game following my diagnosis (my TSH is considered normal, so i can’t take any thyroid hormones). I went on the AIP protocol, adrenal repair supplements, zinc, Mag 07, charcoal supplements, and im still struggling to return to health. My tpo is 6, t4 is .94, t3 is 91, and my tsh was .686 on january 27 and 1.331 on march 5. i had some anxiety before this, but it’s worsened n now i have depression days, too, and mood swings. i just turned 24 and feel like im too young to be experiencing this. im constantly told that it’s in my head n that i need to stop complaining about it and it’ll get better- im literally crying for help and i can’t find anyone that will help me to alleviate my symptoms. i feel like im going insane- my numbers aren’t terrible, so why do i feel so poor? why does it feel like my body is failing me?
I have been battling Hashimoto thyroid for a number of years and have had no help for my actions and what was going on with my body!! For the tenth or so time, I was reamed(literally) by a doctor for being overweight and not doing anything about it. In the process my primary physician has dropped me and I am in need of one because I just got out of the hospital on heavy antibiotics and it seems I will die before I can get anyone to help me. Thank goodness I am close to the end of my life and I will not have to deal with my painful body!!! Or the strange behaviors that through your posts I’ve understood what was going on! I have been reading your posts for a time now and it has helped me to get through the ravages ! I will be able to go on, thank you for your advice and your stories!!!
Hi Phyllis, I’m sorry to hear your struggle. It is hard to struggle through symptoms that you don’t understand and that doctors find difficult to resolve. I am working on some great resources to help my Hypothyroid Mom readers locate good thyroid doctors so stay tuned for more on my site Hypothyroid Mom.
I’ve had hypothyroidism for years and treated with Thyroxin .112 mcg. In February I was ill for more than a month, Covid? maybe. During that time I had no appetite and began losing weight. Fast forward to late August. I’ve lost 35 lbs, still have no appetite, I was irritable and emotional I’m now anxious and emotional. I have trouble with temperature regulation, I have insomnia, I’m anxious always, I feel my heart pounding in my whole body, I have waves of weakness come over me, I’ll feel suddenly nauseated. I feel like I’m going crazy. My Dr just lowered my dose to 100mcg/day. She says it could take up to a month to see an improvement. Meanwhile, I am so stressed and feeling out of whack, can’t focus, settle or accomplish much and just feel done.
Does this seem like an appropriate treatment and what can I do to feel better meanwhile. I just feel like I’m in a holding pattern and I don’t have any emotional reserves left to deal with this.
I also have Fibromyalgia.
I started my hypothyroidism journey when I was diagnosed with Hashimoto’s disease last year. My latest round of lab work has mixed results, so I started thinking and then I started writing. Writing is such a powerful tool! Thank you for sharing all that you do! It’s so important to stay positive. I’ve been learning to use more positivity and humor while living and managing my Hashimoto’s.
Hi, I’ve just been put on 50mg Levothyroxine and I really know nothing about thyroid disorders. The GP didn’t really explain anything he just said “your thyroid hormones have dropped like a lead balloon and your immune system has destroyed your thyroid”. I’ve got a 6 month old that I’m breastfeeding and a 3 year old, I’m exhausted all the time. I’m so frightened what this diagnosis means for my life/future. Any advice would be greatly appreciated.
Meant to say my health hasn’t been great since we lost our first son at 38 weeks pregnant to an umbilical cord accident. I was pregnant again only 7 months later with our second son. All three pregnancies have been Gestational diabetes controlled with insulin injections. My body is just exhausted!
It means fire your doctor for so inadequately taking into consideration how your pregnancy hormones may be affecting you and for not explaining more thoroughly why he’s treating you as he is. If you can find a functional medicine doctor who can treat you as a whole person, you will likely have a better response! So sorry for your experience with this inept doctor!
Hi Dana,
I have been diagnosed with thyroid disease for 15 years when my son was born. I have really struggled with this issue off and on with medication been dx with depression, anxiety and bipolar disorder, chronic fatigue syndrome. It’s so frustrating to see Drs and endocrinologist that are more educated on this than I am but they really don’t care just give you another drug. I want to understand the relationship between the Tsh,FreeT3, and freeT4 and how to lower my Tsh since it’s a bit high.. I really feel overwhelmed and Emotional with all the info out there and not sure what I should try with diet, and supplements since I did go off my meds for depression and thyroid with my dr approval to see how things go. I feel better but think I could do some other things to make me feel great but I’m just stuck…on so many things my diet,my weight since I need to lose 30-40 lbs and my body can’t really do major workouts like I use to since I will regret it but love yoga and low impact workouts.
Any suggestions you have for me would be greatly appreciated.
TSH- 7.3
FreeT3- 3.15
FreeT4- 0.78
Thank you,
Gina R
Dear Gina, let’s see if I can help here … been hypo for a decade now. Looking at your Free T4, your results clearly indicate hypothyroidism (lowest “normal” range I’ve seen from labs is 0.8, highest is 2.2). Hypothyroidism is even further confirmed by your high TSH, for which the typical “normal” range is 0.4-4.5.
I am perplexed as to why your doctor approved your stopping the thyroid medication, which I assume was T4 hormone supplementation (levothyroxine, Synthroid, etc). Once you get back on it and your T4 starts to rise, your TSH will lower, and eventually it will bring you back to euthyroid (normal) state. Thus, to answer your question, there is an inverse relationship between T4, TSH and thyroid state – the higher the T4 within the normal range, the lower the TSH within the normal range; the closer to normal (euthyroid) thyroid state you will be.
As you get closer to the normal thyroid state, your depression, anxiety and chronic fatigue should resolve themselves as they are all known indicators of hypothyroidism. The great thing is that your Free T3 at 3.15 is nicely in range (2.3-4.2), which indicates your body is converting whatever T4 (inactive) hormone you have into T3 (active hormone that does all the good work in our bodies), so chances are pretty good that once you start supplementing T4, you will be able to lose some of the weight as well.
Managing thyroid condition is a long game, easy does it (so that you don’t go into hyperthyroid state), so start on a T4 dose (it will likely be higher than what you’ve been on before) and retest every 6 weeks until you get into normal range and your symptoms resolve. If your doctor says that you do not need T4 supplementation, I would highly recommend finding a new doctor who will patiently and diligently work with you. You deserve nothing less.
I wish you all the best, Gina!
Please read the book and check out the website STTM.
Study up and take control of your health.
After reading this please pass it on to one other hypothyroid person and tell them to do the same.
Angela