For years, a huge body of thyroid patients have remained hypothyroid, or gotten worse with increasing hypothyroid symptoms, due to believing in their doctors.
And the worst group of doctors, as reported again and again by thyroid patients, have been Endocrinologists. So when a new person on any patient forum states they are looking for an Endocrinologist, more experienced thyroid patients wince.
And this is why Stop the Thyroid Madness, and most especially the book, exists–to educate you about successful patient experience and wisdom so that in turn, you can recognize what is good doctoring, and what is NOT…in any physician.
Below is a graphic letter written by an appalled patient about her disappointing experience with her Endocrinologist. Nearly any thyroid patient can identify!
I am writing to you as an ex-patient.
I saw you as a hypothyroid patient with significant weight gain, extreme fatigue, dry skin and poor concentration. You decided that I was “fine” on 50mcg of Thyroxine because my TSH was 3.9. You also suggested that I attend a bariatric clinic for weight loss.
I saw you a second time with multiple biochemical abnormalities. They were high cortisol, low bicarbonate, high anion gap, detectable CRP, and detectable ANA. You told me that none of these results were anything to worry about.
I sought another doctor, because whilst you may be comfortable in completely dismissing numerous abnormal results in someone who remains symptomatic of hypothyroidism, I was not comfortable with this.
Since seeking a second opinion, here are the improvements I have experienced:
* no longer gaining weight
* no longer have dry skin
* no longer exhausted 24/7
* bicarbonate is now in the normal range
* anion gap is now in the normal range
* TSH is now 1
* I no longer need to take salt tablets in order to correct salt wasting
I have also received a diagnosis of Adrenal Insufficiency. This was gained via 4 separate saliva samples over a 24-hour period, which allowed me to see my cortisol fluctuations throughout the day. As I explained to you, I felt that my cortisol was too low during the day and too high at night. This is exactly what my salivary cortisol results show.
You ordered a 24-hour urinary cortisol test for me, and I asked if it would show you my fluctuations throughout the day. You said that it would. I want to draw your attention to your completely erroneous statement. I have no doubt that you were simply trying to end the discussion with me.
My urinary cortisol tests were normal, as I expected they would be. But, this normal result did not indicate just how inappropriate my cortisol secretion is. That is, too high at night and too low during the day. I am thankful that I did not remain under your care, as I have no doubt that you would have continued to minimize my concerns regarding my cortisol levels.
The treatment I have received since leaving your care is T3 medication (RT3 and liver enzymes are both abnormal until I correct the cause and then move to Natural Desiccated Thyroid). This is the first time in years that I have seen an improvement in my thyroid health (lowered TSH, increased fT3), and my adrenal health (I no longer require salt tablets). I don’t think you ever bothered to test my aldosterone levels, which I consider to be negligent in a case where the patient is urinating frequently and requiring salt supplementation.
You and your peers are quick to label hypothyroid patients as lazy — not outright, but by your tones and your suggestions. Rather than offer me an increase in Thyroxine, you condemned me to many more months of poor health. You felt I was better off going to a bariatric clinic than changing my medication! And I know that you would never have offered me an alternative thyroid medication. So, under your care, patients such as myself (who have felt no benefit from Thyroxine) are surely just lazy drama queens. Or so your behaviour would indicate. It’s even more distressing that you maintain this attitude despite clinical signs of hypothyroidism (weight gain, dry skin, exhaustion), and despite multiple biochemical abnormalities.
It’s odd that Thyroxine is the standard medication for hypothyroidism, as effective treatment with this requires that T4 is converted to T3. For many patients, it may be a fair assumption that this conversion process will take place. However, for those of us with continued symptoms and biochemical abnormalities despite “adequate” doses, it is clear that something is not happening as it should. For me, the dramatic differences in my health since beginning T3 medication has demonstrated that conversion was not taking place as it should. You and your peers are happy to call me lazy, but I know that a simple medication change is all that was required to regain my health.
I am aware that T3 medication is dangerous for heart health at high doses, and that this fact makes many doctors avoid its use in cases of hypothyroidism. However, I have three reasons to oppose this conduct:
1. Most medications are dangerous in high doses. T3 is not alone in this regard.
2. In someone with hypothyroidism who has experienced no benefit from Thyroxine, supplementing with T3 medication (or even better, natural desiccated thyroid) is just replacing what the body is struggling to create. This does not mean that the patient’s T3 levels are suddenly excessive, or consequently dangerous.
3. The damage done by inadequately treated hypothyroidism is significant, and certainly greater than low doses of T3 supplementation
So, I write to you both despairing at the level of care you provided, and relieved that I’ve found better care elsewhere. I’m sure you’ll ignore this letter, as you and your peers remain adamant that Thyroxine is the only form of treatment, and those who fail to see improvements must themselves be lazy or unmotivated. This attitude is clearly that of people who have never experienced the devastating effects of inadequately treated hypothyroidism. I hope that one day you and your peers will be able to show empathy for patients such as myself, whether you’ve personally experienced hypothyroidism or not. Whilst personal experience of hypothyroidism should not be required in order for doctors to be empathetic, walking a mile in my shoes would no doubt change the way you treat your patients.
I will continue to see improvements to my health with the addition of T3 medication, and I will be thankful that I am no longer under your inferior care.
A happily-former patient of yours
- See why actress Sofia Vergara is doing thyroid patients no favor by representing Synthroid here.
- Been told you have Chronic Fatigue Syndrome? It might be more than you think.
- Are you on Flat STTM?
- Identical UK twins talk about their hypothyroidism here.
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24 Responses to “Amazing and brutally honest “Tell It Like It Is” letter to her lousy Endocrinologist”
You all sound so educated and comfortable with your thyroid issues. I went to my OB/GYN about five years ago feeling tired, constipated, dry skin and putting on weight. He sent me to an endo who ordered a sonogram and told me I had thyroid issues. She put me on Levothyroxin. Within a month I felt like I was going insane. My brain never stopped churning and I was paranoid. I did some research on my own, and she agreed to put me on Synthroid. She wants me to take 2.5 pills per day; I take about 3/4 of one pill. When I take more, I feel like I’ve taken amphetamines. Today, even at 3/4 of a pill, I feel speedy. My endo never follows up with me and I know I’m overdue for a new sonogram (even though in five years there has never been a change in the results). I literally don’t know what to do.
Hi Dianne. This is just a guess based on what you are saying, but it sounds like you have either low cortisol or low iron, which the Synthroid is revealing. And the irony is that if you do, many patients have found out the hard way that Synthroid would make these two issues worse! What patients do in your shoes is order a 24 hour adrenal saliva test plus all four iron labs, which are shown on this page: https://stopthethyroidmadness.com/recommended-labwork When the results are back, they go to the bottom of the page, click on the Lab Values link, and see what we’ve learned as patients on how to read Labwork. It’s not about “being in the normal range”. Then we treat those if something is wrong, and move over to what we’ve found to be a MUCH Better treatment with Natural Desiccated Thyroid: https://stopthethyroidmadness.com/natural-thyroid-101 Also sounds like you need a much better doctor! https://stopthethyroidmadness.com/how-to-find-a-good-doc
I gave up on conventional doctors! I will continue to see them for the things they do handle sufficiently, but when it come to my Hashimotos, and all the add on conditions that come with it…I am seeing a functional medicine practitioner. My insurance does not pay for his services and I have to pay out of pocket, thank goodness he accepts payments, but my health and my state of mind are worth it.
I also have had problems for years once I had the radioactive iodine treatment. I left the endo’s when it was obvious that they were not listening. I went back to my family physician and begged him to help me. I started with the change over to Armour thyroid and then he later added adipex which helped with the appetite. I was on these 2 meds for about 2 years and I finally was feeling like myself again since this combination kicked started the metabolism. I was exercising, my skin was no longer dry, my hair was no longer brittle and my feet were no longer burning and so dry that I couldn’t stand it. I was on top of the world health wise and then for some unexplained reason my doctor took me off of the adipex and didn’t not substitute anything for it and now I am back feeling awful and he will not listen. All doctors think that it’s the age old adage that women always complain about weight gain and no energy well lets see them walk in our shoes for a month and see how they feel. A lot of doctors are prescribing this for their patients now and it’s working because the metabolism is working. For gods sake open your eyes and listen to us these are legitimate complaints, they are not made up. For me I was finally my old self again and people that knew me noticed it and then my doctor just dropped me just like the endo’s did. Good luck to all because I don’t know how to tell you to get your doctors to listen.
I agree that some doctors are lazy and arrogant and others are just not well informed or educated. The above article and comments are very educational. I have not yet read Janie’s book but I intend to get it ASAP.
One thing that came to my mind though is that the comments and article only mention a very few supplements such as Dedicated Thyroid Extract, aldosterone etc. No one has mentioned a good vitamin/mineral supplement. The human body requires approximately 72 minerals and vitamins. They work in synergy to synthesize the hormones and enzymes that are needed for optimal health. A friend of mine had tremendous results for her hypothyroid using a top grade nutritional supplement.
There are good supplement and others are not worth the package they are sold in.
Another thing that I noticed, there was no mention of “goitrogens”. These are the vegetables that prevent the uptake of iodine. Do not avoid goitrogens altogether but space them after a meal high in iodine (such as sea kelp). Remember the brassica vegetables are high in vitamin K and help prevent cancers.
To better Health
I have read many comments about how people suffer when given insufficient thyroid hormone or hormone that their body does not accept. Are people aware that insufficient thyroid hormone can cause death? My friend, Ellen, was able to survive on 137 mcg of T4. Her doctor gave her a TSH test and lowered the dose to 100 mcg, without telling her. Ellen’s daughter handled the pills and Ellen never saw the label. First Ellen suffered short term memory loss and confusion, a common symptom of low thyroid; her doctor had Ellen’s memory tested and said Ellen had dementia. Next Ellen’s muscles got weak and, instead of upping her thyroid dose, the doctor got her a walker. Ellen had RH and the doctor gave her a standard dose of Opiate which caused her systems to shut down and it was thought she would die; giving a standard dose of an opiate to a hypothyroid patient usually causes death ( I discovered that a couple of years later in a medical textbook ). However, she survived this. After 2 years of mental and physical deterioration, My friend was placed in hospice care at home unable to eat or drink; she was in a coma. I visited her to say my goodbye and noticed that her face was swollen. That is another symptom of severely low thyroid. “Wait a minute!” I said to her daughter, “How much thyroid have they been giving Ellen?” Oh, 100 mcg. All the time Ellen and I thought she was still getting 137 and did not correlate the new symptoms with hypothyroidism. My friend died the next day. Her doctor did not consider that Ellen’s symptoms were from the lowered thyroid dose. I have the same HMO and started a fight to keep my 137 mcg thyroid dose and my life.
That’s awful, Ruth. 🙁 I am so sorry. And according to decades of patient experience, you might want to consider moving over to Natural Desiccated Thyroid, which gives even better results. https://stopthethyroidmadness.com/natural-thyroid-101 and Chapter 2 in the revised STTM book for more.
I don’t see my comment; perhaps I clicked the wrong thing. Anyway, I tried porcine thyroid when I was diagnosed but I got terrible hives. Unfortunately, I have a myriad of allergies. I got hives from Synthroid and some generics too.I did take Thyrolar 2 ( T4+T3 ) for a long time until it had to be refrigerated; then I switched to generic T4. I might go back to Thyrolar 2.
Sorry, I meant RA, not RH. She was given an opiate for arthritis pain.
As a biologist that considered going to medical school and knew people that did, I completely agree doctors are under educated.
I have symptoms of ht but my primary doctor has insisted on treating each symptom on its own. I finally insisted he refer me to an endocrinologist thinking that would be better. After reading this I’m thankful I will be seeing a naturopathic doctor instead. Thank you.
Excellent letter! Well written.
Love the letter! It reflects exactly how I feel about most doctors today! I still don’t understand why this occurs! Are the doctors lazy or do they not want to deal with insurance companies? It took me a whole year and 4 different doctors before I finally found one who would listen to me!
I think a lot of American doctors are undereducated. It’s too easy to specialize instead of becoming good at treating the whole body, and many who specialize become arrogant and lazy, thinking they already know all there is to know instead of realizing that they need to do constant research to stay up to date as science learns more about the human body and disease. A lot of doctors find it extremely difficult to admit they don’t know about something–I’ve worked with many of them over the past 22 years. If you go to them and tell them what you’ve learned about your disease, that takes the control away from them and they don’t like that. Medicine has to get back to treating the body and the person. They need to learn to listen to the person who is having the symptoms. Many are into the big bucks more than really seeing a person in need of care. Thankfully not all are this way but too many seem to be. Especially the older doctors.
Even the specialists are undereducated. After I read a textbook that said the hypothalamus regulated perspiration, body temperature and told the pituitary to emit TSH, I asked my endocrinologist if there might be something wrong with my hypothalamus as I made literally no TSH, did not perspire and had a body temperature of a 3 hour old corpse. Her answer was that, “Why the hypothalamus has nothing to do with TSH!”
It’s not just American doctors who are under educated. I live in Toronto, Ontario and I’m on my third endocrinologist. I’m 62 and I had Radioactive Iodine treatment (worst medical mistake ever) for Graves hyperthyroidism in April 2011. By Sept 2011 I felt miserable and my endo pretty much said too bad so sad, bye bye. I went to my family doctor and she did her best to help me by upping my synthroid dosage and then after much begging on my part, added cytomel in Feb.2012. It help with the cold body temp but not much else. So she sent me to another endo who, after the second appt said this is very complicated and sent me to a third endo who she said was an expert in T3. I saw him today and he thinks I may be overmedicated! No thyroid function, 75 mg Synthroid and 10 mcg Cytomel and I’m over medicated – really? I’m not overweight and I work out so he couldn’t tell me I’m lazy and change my diet or anything like that, but he said my symptoms could be caused by other things that my family doctor will have to deal with. He just looked at the numbers rather than listen to how I feel. Anyhow, he had blood work done to ‘rule out’ other issue eg adrenal, cortisol etc. OMG, if he reduces my meds, I don’t know what I’ll do. I’m having a very hard time finding anybody here who will prescribe NDT and have asked ERFA if they can provide some names.
When I read these comments I swear my home has been bugged by all of you because how else could you know what I’m complaining about!
Great letter! Several years ago I saw 3 different Drs. once each (1 endo) and fired each because 2 of them insinuated I’m lying about my symptoms. One emphatically told me to eat more broccoli! The endo didn’t take an interest or pursue. I continue to feel like crap 24/7/364. I eat very healthy (never eat out), low fat, high fiber, no meat but sufficient protein via non-meat. I walk A LOT every day mostly because I have to, and also do some cardio and toning, despite constant fatigue. My hair is dry and thinning, skin is dry, body temps as low as 95.3 even when it’s hot outside. For years I’ve wondered what is wrong with my face, eyes then recently found hypo symptoms of dull expression and puffy eyes. I’m in Pittsburgh PA area. If anyone out there knows of a proven good endo and reg MD, PLEASE share with me! THANKS. Good luck to all!
Please please PLEASE reconsider your diet! Go read Mark Sisson’s blog (Marks Daily Apple) or any paleo/primal blog… Just like the docs keep telling us such garbage about our thyroids, so the mainstream (medicine, media, govt) tells us the stupidest (and horribly unhealthy!) things about diet, nutrition, and health!
“low fat, high fiber, no meat but sufficient protein via non-meat”
Low fat? The body’s hormones are built on healthy fats! (That does NOT mean “vegetable” oils (which should be called: industrial *seed* oils — ever squeeze corn and get oil out of it?!) (Watch Tom Naughton’s ‘Science for Smart People” on YouTube — very funny and all science-based!). Read Dr Mike Eades’ blog post on fiber! (Not healthy — the whole ‘eat more fiber’ crap turns out to be just as wrong as the ‘take some T4 and shut-up’ advice. And if any of your “sufficient non-meat protein” comes from soy — well, soy damages the thyroid!
Working to heal your adrenals and thyroid are necessary — but without ‘healing’ your diet too — you’ll never arrive at health! And what we’ve been told about diet is as screwed up as what we’ve been told about thyroid health! PLEASE go educate yourself on this too!
I too use to have your symptoms, was even on thyroid medication, was following low fat “healthy’ diet. felt tired all the time, gained weight. I started following a primal way of eating with more protein and fats, feel way better, doing parkour and won my age group in an obstacle course race.at age 50. No meds now either. Definitely check out Mark’s Daily apple.
what a great letter! and comments. i still haven’t found a dr whom i like,and still feel tired and am gaining weight.
I agree Karen and right there with you. I continue to gain at least 10 lbs every year for the last two years and its alarming to me as I approach 185lbs. I’m 43 and 5’6″ and I am too exhausted to exercise, no energy at all and I eat very well.
I’m devastated that my doctor was similar in saying,”it must be something your bit doing right!” I left that doctor!
Trying to find a solution but the depression is overwhelming and I isolate myself since I don’t feel comfortable going out and doing anything at my size.
I miss me and wish I could find an answer to lose the weight before it gets out if control. And really lose myself.
I need help and I just don’t know where to go and what to do anymore.
Debra, so sorry what you are going through. Time to start learning from patients! Read https://stopthethyroidmadness.com/things-we-have-learned and the revised STTM book has more detail. You CAN get out of that depression, fatigue and weight gain by learning what patients have learned. 🙂
I agree wholeheartedly with Janie, stopthethyroidmadness is a phenomenal site and covers the many complxities that thes hormones affect, including how when one goes (thyroid or adrenal) the other goes too, they have a relationship. I am a nurse and they didn’t tell us all this great stuff in nursing school. I also am adrenal/hypothyroid. I have a wonderful natural doc, who is an MD, and he can tell if i am still not on enough thyroid from my pulse. He encourages me to increase my dose by my nown judgement and tells me what symptoms to look for. I am finally showing a normal thryoid pulse on 6 grains of natural thryoid daily. That is alot, anyone will tell you. But I also take 1500 mcg of iodine and 7.5 grains of raw adrenal daily. Then i discovered the 12 tissue salts, (homeopathic) and they have boosted my system a little more. They make the cells more accepting of the nutrients I am trying to shove in there. And since taking them, (a month0 i am no longer showing low electrolytes. It was a challenge to take extra salt and magnesium and C and everything. I still take high doses by most standards, but it is much less than I was having to take. It can be expensive. I also used alkaline water (pHenomenal) for month and that helped my sore feet and energy levels too, so I could work 16 hour days again. I am only off it because I ran out of pHenomenal water and it is spendy too. Also, my doc upped my progesterone to 240 mg per day, in a cream (I am 50). This caused my saggy old boobs to fill out. My husband is pleased.
..so does anybody wonder why we sufferers call such doctors Endoprats?
As a person who’s been given more meds that hurt me than I care to think about (two that were taken off the market after people died), I find the concern concern over T3 and just how meds are researched and approved very interesting. I’ve been there with endos, and wonder how some arrived at specializing in the area