My name is Barbara Lougheed and I became hypothyroid after radioactive iodine treatment (RAI) for Graves’ disease in 1993. I was exhausted from the high heart rate and insomnia that is common in hyperthyroidism, and glad that RAI “fixed” my problem. I was unaware of the potential side effects of RAI and fortunate that my doctor gave me a relatively low dose. However, I now needed thyroid hormone replacement for the rest of my life, and finding the correct dose is trickier than doctors would have you believe. I have been on levothyroxine (T4, like Synthroid), liothyronine (T3, like Cytomel), natural desiccated thyroid (Armour, Nature-throid, Erfa’s Thyroid, and NP Thyroid), and combinations of these medications. I am also menopausal, and use compounded bi-est sublingual tablets and topical progesterone.
After radioactive iodine treatment, I was put on Synthroid and seemingly did fine for many years. In 1998, I injured my back at work moving some heavy boxes and was diagnosed with sciatica. The pain was unbearable and worse than labor! I was put on a prednisone pack, and to my utter amazement, the pain slowly disappeared. Physical therapy restored my mobility and I continue to do the stretching exercises I was taught and the sciatica has not recurred.
The prednisone pack may have temporarily shut down my adrenals, because that seems to be when my thyroid problems started. My levothyroxine no longer seemed to work—my hair was falling out, I was gaining weight, and was becoming brain fogged. I asked whether my dose needed to be increased and was told that my TSH (Thyroid Stimulating Hormone) was just fine, smack in the middle of the range, like 3.0. I muddled along, buying bigger clothes to accommodate my expanding waistline.
I switched health plans around 2002 and ended up with a new primary care physician (PCP). I asked him if maybe my hair loss was due to my thyroid dose being too low, and he proceeded to tell me a story about female pattern baldness, and how most of the women in his family have it. He is also bald, of course. But he is also pretty open-minded, so he prescribed me a higher dose of levothyroxine for my next refill. I would take the new dose for 6 weeks, get lab tests, and then return to him, with no improvement in symptoms. I went from a levothyroxine dose of 75 mcg to 88, to 100, to 112, and then when I was about to ask for 125 mcg, I saw an article about natural desiccated thyroid and asked if I could try that instead. I was put on 1.5 grain of Armour, and the first thing I noticed (in only three days) was that the whites of my eyes became white! They had been yellowish, like that of an old person, even though I was only in my early 40s. But there was really no improvement in my hair loss.
On 1.5 grains of Armour, my TSH spiked up to 4.66 and my total T3 shot over range. I switched from 112 mcg levothyroxine one day to 1.5 Armour the next, and maybe it was just too much T3 all at once, for someone who’d probably been low for a while. The prednisone could’ve also lowered my adrenal function. At this point, my PCP referred me to an endocrinologist. The endocrinologist saw my TSH and said I needed a higher dose of Armour and worked me up to 2 grains. I felt great! But the next set of labs showed my TSH was below range, so I was cut to 1.75 grain. Then the labs after that showed my TSH was still low and I was cut back to 1.5 grain. My hair became thin again, I was cold all the time, and I had to wear a jacket in the office. But on the next set of labs, my TSH was in range! [TSH levels do not reflect thyroid levels]
Somewhere between cutting my dose from 2 grains to 1.5, I endured three hurricanes two weeks apart, had a hysterectomy, my father died, I had knee surgery, and got laid off. This was all during a 15-month period. Then I developed asthma. Since I was home all the time, I started researching the causes of asthma on the internet and concluded that I just needed to raise my Armour back up to 2 grains. [asthma can be caused by low thyroid] But that was easier said than done. My adrenals must’ve been pretty stressed out, because when I tried to raise my dose, I felt worse, not better, like before. I suddenly had a fast pulse and high blood pressure. It didn’t make sense, because I’d taken 2 grains before and felt great. I thought I was hyper so lowered my dose and eventually had to deal with low cortisol and low thyroid symptoms like hypoglycemia and insomnia.[hyperthyroid symptoms when hypothyroid]
That’s when I started joining various health groups on the internet, where patients exchange advice with one another. I learned about reverse T3, had labs run, and found that my ratio of FT3/rT3 was 11.8, considerably less than the desired 20 or more. This was on 2-1/4 grains of Nature-throid, and the protocol to clear reverse T3 is to take only T3 and no T4, since all reverse T3 comes from T4. I slowly changed the dose till I was taking only 1 grain of desiccated and 25 mcg T3 (5 mcg fives times a day). I actually didn’t feel any differently, and certainly did not feel “hyper” or have a very fast heart rate, though it was in the 80s (below 80 is preferable). But one day, I realized I’d lost considerable brain function. I have always done a lot of math in my head while shopping, taught by my engineer dad how to add, calculate percentages, and figure out the tax. Then one day, at a produce store, I could not figure out the change from a dollar. Simply could not compute. I can remember driving all the way home trying to figure out the change from 87 cents. Of course the clerk had already given me my 13 cents, but I still hadn’t “verified” it in my head, like I normally do. I thought it odd that I couldn’t add anymore, but didn’t think anything more about it. Then later that afternoon, I replied to a post on one of the internet forums. It appeared a few minutes later and I read it, not realizing that I was the one who’d written it. I had absolutely no recollection of writing it, but everything is time-stamped, and that post had been written only three minutes earlier. Since the only change I’d made in my thyroid meds was to add more T3 and reduce the T4, I figured the problem was either too much T3 or too little T4 for my brain. This protocol was not for me! [high T3 can cause hyperthyroid dementia] I immediately went back to 100% desiccated for a while, before recently switching to desiccated + T4, since my FT4 is too low on only desiccated. [T3 and T4 both need to be optimal] And I’m back to doing math in my head and remembering what I’ve written again, thankfully! Since adding in T4 and lowering the desiccated part of my dose, I have more hair, and the texture is not as dry; even my hairdresser noticed! Some of the dark tanning I’ve had under my arms also seems to be slowly fading away.
I continue to educate myself, reading books and medical journals (hooray for Google Scholar, PubMed, and the internet!), and realized there is a lot of misinformation out there, and strong (erroneous) opinions held by both doctors, and patients on the internet. I created this website to serve as an information source for multiple hormone topics. If there are side effects to a protocol, I feel one should be aware of them. There should be full disclosure, whether the recommendation is from a doctor or a fellow patient, but that doesn’t always happen, and I feel many have been harmed by some of these protocols. This website is my voice, and a way to express my opinion.
I have included medical journal references that back up my statements, because I did not want this site to be “Because-I-Said-So.com.” If I could not find a reference, then my opinion was formed from the first-hand reports of multiple people that have posted on thyroid internet forums. While some will contend that you cannot believe anything without a double-blind, randomized, controlled study, I feel it is equally wrong to dismiss multiple anecdotal accounts that, in aggregate, point to the same conclusion. The most obvious example of this is that one cannot dose by TSH.
I am not employed by any pharmaceutical, medical or vitamin/supplement companies. I became a self-employed writer when I released the Tired Thyroid book. I created TiredThyroid.com to counter all the misinformation I feel is propagated on the web by both doctors and patients, who innocently repeat the same misinformation over and over. Ads on the site are intended to generate revenue to cover the costs associated with a legitimate website: domain name registration fee to retain the name TiredThyroid, an annual web hosting fee to my webhost, iPage, and numerous software and business license fees. If you’ve benefited from the information presented here, would like to support the site, and occasionally order items from Amazon, place your next order through the amazon link located in the sidebar, bottom left. Your price will not be any higher, but TiredThyroid will receive some pocket change. I have a Wish List of books that I hope to add to my collection with your support. You can also order my Tired Thyroid book on Amazon, which contains much more detailed explanations with charts and graphs. There are five case studies in the first part of the book: me, a Graves’ patient who had RAI, a hypopituitary man, a woman with Hashimoto’s disease, a young man with an iron loading condition, and a woman with Graves’ who used modified block and replace and alternative treatments to control her Graves’. The second part of the book contains new information not found on the website: chapters on iodine, autoimmunity, reproductive problems, and thyroid physiology. As one amazon reviewer said: “If you can only buy one book about thyroid, this would definitely be the one to choose.”
Have something to say? Leave a comment on the website, your story on the blog, or if you’re interested in an affordable hormone counseling session, contact me for more details at barb @ tiredthyroid . com.
Education: Bachelor of Business Administration in Marketing, University of Hawaii. Initially majored in Zoology, and coursework included chemistry, biochemistry, zoology, anatomy, and microbiology.
Previous position: Database map analyst using MapInfo GIS software and DI-Diver database analysis tool; employed at The Orlando Sentinel daily newspaper 1986-2005. Enjoy analyzing data and looking for patterns.
Member of multiple thyroid and hormone internet forums.
I do not always agree with everything I read, but my views have been formed from books/websites by the following doctors/authors (in no particular order): Broda Barnes, Uzzi Reiss, Jacob Teitelbaum, Mary Shomon, Kathryn Simpson, Raquel Martin, Janie Bowthorpe, Jonathan Wright, Michael Platt, John Lee, Stephen Hotze, Eugene Shippen, Phuli Cohan, Michael & Mary Eades, Abraham Morgentaler, John Crisler, Romeo Mariano, Richard Shames, Philip Miller, Stephen Langer, Stephen Sinatra/James Roberts, Suzanne Somers, Michael Ozner, Rodger Murphree, Winnifred Cutler, Elaine Moore, Datis Kharrazian, Ian Blumer/Sheila Crowe, Sally Fallon, Barry Durrant-Peatfield, James L. Wilson, and Thierry Hertoghe. Thank you public libraries!
I like to know the underlying cause of a symptom and have researched topics in autoimmunity, cardiology, dentistry, dermatology, endocrinology, hematology, oncology, and ophthalmology. I love the internet!