In July 2015 I was diagnosed with Graves’ Disease. A year before, I knew something was wrong with me. It started with edema in my legs and feet, then exhaustion, high anxiety, feeling sick all the time, and insomnia. Every joint in my body hurt. I went to see my family doctor countless times and was eventually diagnosed with fibromyalgia.
Cindy McLaughlin, Thyroid Thriver
Diagnosed with Graves’ Disease in 2015
The doctor didn’t believe me
Other symptoms persisted so I started researching, and it always led back to thyroid issues. I would tell my doctor this, but she would just check TSH and say that everything was normal. I was frustrated. A few months before my Graves’ diagnosis, I started sweating profusely, my body was shaking and my resting heart rate would sometimes be 120bpm. My doctor still refused to believe I had a thyroid condition. More research led me to discover antibody tests. Lo and behold! There was a problem with my antibodies. My family doctor sent me to an endocrinologist, who also didn’t believe my symptoms, but who decided to do more advanced antibody tests.
Three weeks later, I got a call saying that I had Graves’ Disease and that I needed radioactive iodine treatment. Nothing was explained to me, nor was I offered any alternatives. On July 23rd, 2015, I took the radioactive iodine, and three weeks after that, the real nightmare began. No one had told me what to expect or what would happen or how long it may take. Hypothyroidism hit fast and hard. Still, I waited another week to take a blood test because I was told to wait four weeks.
I was scared
A few days after the blood test, I got a call and was told my thyroid had died: there was no more function at all. The endocrinologist still just gave me a prescription by phone for 150mg of Synthroid. She did not arrange to see me to explain what I was feeling, or what to expect. No one took the time to explain anything to me. I was scared.
I could barely get out of bed and walking seemed impossible. Life, in general, felt surreal. The first time I took Synthroid I thought I was having a heart attack. The pain in my chest was unbearable, but I thought it must be in my head. I didn’t want to go to the hospital because I was afraid they’d look at me and say I was crazy. It seemed like they all thought I was a hypochondriac.
After two days, I finally called my family doctor. She saw me right away (which was miraculous) and she said that my body had gone from having too much hormone to none, so I was to take half of the pill for a week and then resume the full dose. A month after my thyroid died, I was also diagnosed with diabetes. Yay!
No improvement while on Synthroid
After almost six months on Synthroid, there was no improvement. I felt like some days I was going crazy. Sometimes it felt like I was standing on the edge of a cliff and an internal battle was waging: Should I jump and make everything go away or do I take a step back and fight?
Lack of sleep even though I was exhausted, mood swings I couldn’t seem to control, some days just drifting through the fog, excessive weight gain. Despite all this, I was told by my doctor that I should be feeling fine because my TSH levels were in the normal range — my symptoms must be in my head or they were not related to my thyroid issues. I’ve never been so frustrated or this discouraged in my whole life. I raised five kids alone, had drug-addict boyfriends who terrorized me, stole from me, beat me, and still, I never gave up. I still laughed every day, played with my kids, and was still active and full of energy. It never got me down.
I’m a shell
And then this tiny gland and incompetent doctors stole my life away from me. I’m a shell of how I used to be. Looking in the mirror I don’t know who I am: all I see is a woman with a bloated face and tired eyes with no spark left in them. Being able to do all the dishes is now a major accomplishment. I have no one to talk to, no one who understands me.
Finally, a month ago I got mad at my doctor and told her that she had two choices: either she prescribed me natural desiccated thyroid, or I stopped the Synthroid and I would eventually die. I had been begging for months to try it and she would always say no. I knew I had to do something: Synthroid was no help. I still felt dead inside and showed no signs of improvement. Things had been the same since the beginning of the treatment. I told her I didn’t care what the blood results said. I told her I feel like death.
I’ve also been hospitalized three times for UTIs that went to my kidneys and into the bloodstream, and I’ve been on antibiotics since November 11th. Additionally, I have growths on my ovaries and it’s taken my doctor over two months to finally send out a referral to a gynaecologist.
One good thing is that I won the battle for natural desiccated thyroid (NDT). I’m on the thyroid by Erfa, the Canadian version of Armour. Unfortunately, my doctor has no clue how it works. I went from 150mg of Synthroid to 30 mg of NDT for a week, then 60mg for another week and now I’m on 90mg until my next blood test on March 25th.
No one understands me
The suicidal thoughts are back full swing, I’m crying all the time, and now I sleep even less than before. My anxiety is off the charts. I don’t know how to handle all this; even my diabetes is out of control. I can’t remember half the things I say or do. I’ll be talking about something and completely forget what I was talking about. I feel stupid and incompetent.
I think the feeling of not being understood is by far the worst. Is there any hope of ever regaining some semblance of normality? Any suggestions, and hope that things will one day be okay, would be beyond appreciated. Thank you so very much for reading my story.
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Questions or anything to add about your thyroid doctor? We want your thoughts, please. You might just help someone else in need.
Get to a Naturopath or Functional medicine doctor, get your Reverse T3 tested.
People on T4 Only medication develop high Reverse T3. It should be at the BOTTOM of its range.
Reverse T3 BLOCKS T3 from getting into your Cells.
Your situation is VERY COMMON.
Get a Full Thyroid Panel including Free T3 and Reverse T3, get a copy of your results, then join FTPO CANADA group, on Facebook, post your results there for Feedback.
T4 Only medication like Synthroid, DEPLETES your Iron and MESSES up the Adrenals, BOTH OF WHICH, need to be in good shape to successfully raise NDT to your optimal.
You are currently on 90 mg of Thyroid. That is 1.5 grains. Most need between 3 — 5 Grains.
But you cannot raise past 1.5 without testing Reverse T3.
Thank you for posting that. I certainly can relate. But is encouraging to know you are not alone.
I so understand I went through the same thing ,the Endo I had made it clear that I was to stay on synthroid only, so for 3 yrs I suffered I always felt sick tongue was always twice the size, body always swollen I craved carbs .. then I woke up one day and decided I needed to dig deep into how this all worked ,I researched every thing thyroid and I have tried almost every thyroid med out there ,however what I discovered was I needed both synthroid and NT .I have found while on natural med only my T4s would drop this went on for about 2 yrs and I finally ask my doctor to add some t4 to the mix ..and it has done wonders for me , I also had RAI and no longer have a thyroid due to graves . . It took me many yrs to get to this point and I finally feel like I am getting somewhere ..I have an amazing doctor whom really listens .
I find many stories on sites about thyroid problems very humbling. I have an underactive thyroid and take levothyroxine and apart from gettimg tired more easily than my friends and a couple of other gripes I’m well, especially compared to those who have graves desease or Hashimoto’s thyroiditis.
My point is this, there are so many of us makeing waves at doctors surgeries all over the world we are complaining all over facebook and other sites even on television sites (at least here in the uk there have been 2 programs mentioning ) yet there is no change.
How do we reach those influential organisations who could help change the attitudes of health authorities?
Can anyone send me the names of relevant authorities such as The World Health Organisation.
Sorry error in my email address.
You poor dear soul. Please don’t give up. I don’t have any answers for you, but I wanted you to know you were not alone. I so often feel the same. I have three young boys at home. And when my husband happens to be home from a job project he constantly complains that I’m not doing enough. It even warn him when I’m not feeling good (and those are my worst days) yet he lies around the house expecting me to be his humble little servant. (Yes, there are other issues there.) In any case, I have been down your road, though not as severe. Have you tried changing your diet? I would suggest researching how diet affects the thyroid. It may not help you lose weight, but I have noticed it at least helps me feel clearer. Also, maybe you’ll need to be at the same 150mg from the desiccated stuff. I live in Germany, so I am completely in the dark as to what the drs give me. But I was having a horrible time with my meds. Then we moved, I found the closest dr to me, and she gave me a Rx. I didn’t remember the name of the old one, so she gave what she always prescribes. Within a week I noticed I had so much more energy. Wow! I am hoping this trend continues. Good luck.
Your story sounds so much like mine. I feel your pain. Some days I just sit here in a daze. Can’t remember things from the day before and just feel lethargic. I have slept whole days away, but thats also my hyposomnia. Then I also get insomnia when im trying to go to bed at a decent hour. So my life is really a yoyo and i get mad at myself cause i cant do the things i used to be able to do. Or I forget something I was supposed to do after the fact. I have an appointment set up in a month for my endo and shes gonna hear it this time. Something has to be done. Im on Armour 90 mg a day. And my diabetes is out of control as well. I hope you and I both get some real answers and some real help soon. The struggle is real.
Please see a naturopath right away! Most thyroid patients have underlying adrenal fatigue which I suspect is why you are feeling anxious with the dose increases of the thyroid hormone. Also get your adrenal and sex hormones checked through the Dutch test which your naturopath can order. With adrenal fatigue, progesterone is often low which can cause symptoms of anxiety, water weight gain, depression, insomnia just to name a few symptoms. Low iron can also cause anxiety and extreme fatigue and get that checked as well.
Diet wise stay away from gluten and goitergens (uncooked greens). Eat small meals often with mix of proteins, carbs and fat to keep your blood sugar steady and prevent you from feeling like death all day.
Above all, do not give up!! You will overcome this! I went through 6 different doctors before finding the right one and I’m a health care professional! Most doctor’s are completely oblivious and narrow-minded!
Google Izabella Wentz and Stop the Thyroid Madness…they are great resources. They tell you how to order your own lab tests as well. Not sure if you can purchase your own medication without a prescription in Canada…might look into that.
Forgot to mention that Amy Myers MD is also a good resource. Check her website. She went through what you are going through, had Graves disease and was given radioactive iodine.
Graves disease and radioactive iodine treatment. Know what your going through. Treated 16 years ago and still going through most of what you do. The anxiety, brain fog, insomnia, digestion issues, muscle pains, and the list goes on. And its always your labs are in range. Can get very discouraging! Hang in there! Never once offered an alternative med. take levothryoxine.
I can say ditto to most of your story. Hang in there. Six-9 months after being on NTD I feel like a new person. It takes awhile. I have been where you are …on that cliff. It is so disheartening when you feel all alone…but as long as there is even just one person…even if on fb…its a reason to keep at it.
Get to a function doctor/integrative doctor. I have been on the same path as you for the last 2 plus years but my integrative doctor has really made a positive change in my quality of life. My opinion is you’re not on enough of the NDT, but really pay attention to your diet as well. Good luck.
You need to see a functional MD or integrative MD or bio identical hormone doctor. RUN AWAY from the endo and your GP for thyroid treatment. Once you get a doctor that knows how to treat correctly you will start to feel better. A good doctor will test TSH, Free T4, Free T3, antibodies, iron, adrenals etc. I know this is hard and I have been where you are. Flat on my back for 3 years being told it was all in my head and stuffed full of synthroid and antidepressants. WE NEED TO FIGHT for better care! All of us need to get off our butts and demand better care. I found a doctor who knows how to treat correctly. DO NOT GIVE UP!!!! Google is your friend. Find a bio identical hormone doc in your area and ask if they treat using ERFA thyroid or compounded thyroid meds. Google functional MD or integrative MD in your area and keep fighting! Join Facebook group called Canadian Thyroid Support Group
Get your vit B12 and D levels checked, it’s very common to have those deficiencies as well as thyroid problems. The symptoms overlap as well. Vit b12 should be over 400 and D over 80. Once all 3 things are optimal you should start to feel better.
I am so sorry and I completely understand how you feel. I saw a few really terrible doctors also. One that even tried to convince me that my TPO anti-bodies being the tens of thousands was fine because my TSH was : / Meanwhile the anxiety, weight gain, lack of energy, and my hair. I lost so much I had bald spots of the top of my head. It wasn’t until I went from being hypo to hyperthyroid that I finally got in to see a holistic doctor and she changed my life forever. I don’t know what your options are in Canada for natural doctors but it wasn’t cheap, they aren’t covered by medical insurance. She put me on small dose lithium to bring my thyroid back down into the normal range. I also started giving myself B1 & B12 injections because I had neither of those vitamins in me at all. Apparently that’s very common in thyroid sufferers. My diet changed, no wheat at all and no dairy. I can do some carbs, potatoes, rice but no bread or any white refined sugars even the gluten free kind. They send my numbers crazy high, triglycerides, blood sugar and I bloat up and hold water. I am also taking 2 grains of nature-throid and high dose iodine (Iodoral x4) supplements to support thyroid function. I’m nowhere near normal but I am getting there. I have way more energy, little anxiety and my hair is growing back in spots. My antibodies were recently tested and came back at 204, so I am healing. It’s been about a 6 year journey, most of which spent trying to convince doctors there was something wrong with me. I hope you find someone who can help you, you are not alone <3 Next time you go in to the dr's, at least tell them to give you a B12 shot.
I can definitely help you with this, when you had to have the radioactive iodine as you know that’s the poisonous one that will kill anything including your thyroid, I don’t know if you’re aware but there is two, you need to research Dr David Brownstein who has treated his patients with lugols iodine. My son had hypothyroidism when he was 10 and no Doctor would help him, I did some research and put him on survival shield x2 nascent iodine, one of the best iodines money can buy, he was also taking selenium with the iodine as this helps convert t4 to t3, my son no longer has hypothyroidism, he’s completely cured, you can also eat a lot of foods that contain iodine the main ones are seaweed and fish. Lots of good luck. ?