10 reasons many thyroid patients are still frustrated, angry, and sick
Updated in 2015:
It’s a continuing travesty, and you see it in patient groups.
i.e. many patients still find themselves sick and disabled, stumbling miserably from one uninformed doctor to another…in spite of the wonders of natural desiccated thyroid, the testimony of changed lives, the education of patients thanks to the STTM website & book, and a small but growing body of wise doctors who seem to be “getting it”,
So what’s the problem?? It lays with our doctors and the entire medical profession.
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Heavy-handed control over your medication:
You go to pick up your prescription, and find your medication has been lowered by your doctor without your agreement or knowledge, as happened to Terry here (scroll down to find her post).
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Ignorance about adrenal insufficiency and treatment:
You clearly have an adrenal problem, and one doctor dismisses its existence, another doctor poo-poos the saliva test, another doctor tells you cortisol supplementation is dangerous, another doctor thrusts all his herbal supplements at you, another doctor thinks that 5 or 10 mg cortisol is enough…and on and on and on.
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Thinking that falling in the range is optimal:
If a lab result within those numerical boundaries, which are based on a set of people a laboratory picked to come up with the range, says I’m normal, WHY do I still have issues??
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Dismissing you:
You are wise thanks to reading, researching and living in your own body, yet your doctor calls you a problematic patient on your charts, dismisses you, or gets angry.
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RT3 huh?
You have strong suspicions that your Reverse T3 is too high thanks to low cortisol or low iron or Lyme or undiagnosed gluten issues, etc, yet this doctor refuses to test you, that doctor says an RT3 excess is rare.
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Look at me! Look at me!
You make an appointment with that great doc who has a fabulous website/book and who shouts that he uses desiccated thyroid with a big smile…yet some or all of the above and below occurs with him/her or his “trained” associates.
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Continued worship of the TSH lab test:
Too many doctors still think the TSH lab test is from God Almighty. So when you finally start to feel well on desiccated thyroid with a TSH at zero or below…WHAM…you must lower your meds because you are somehow “hyper” in spite of no symptoms to match whatsoever and improvement in our bone density and heart health.
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Pharmaceutical addicts:
You mention your lingering hypothyroid symptoms, and you are bandaided with anti-depressants, anti-anxietal meds, statins, BP pills, pain tablets, acid reflux pills, calcium for your thinning bones…instead of understanding from your doctor that these are ALL side effects of poor thyroid treatment.
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The country you live in:
The desperation of UK thyroid patients is deep thanks to a thyroid association and a College of Physicians which tightens the screws if a doctor dares to prescribe a life changing medication with T3 in it. Or just as frustrating, having a government which forbids desiccated thyroid to arrive to you in the mail, or like Denmark, refuses to dispense it.
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Reformulations and Big Pharma apathy:
In 2009, then Forest Labs turned one of the most popular and effective desiccated thyroid brand, Armour, into a pill with too much cellulose and too little sucrose, causing a massive return of symptoms in many. Â RLC also reformulated their Naturethroid to some degree, and though some patients still do well on it, others did not anymore. Erfa made some kind of change in 2014 which they denied, yet certain patients all over the world reported new problems they had never had before. You are left wondering WHAT is going to happen next!!
And there are more reasons you might want to bring up in the Comments part of this post.
So you see, it’s no wonder so MANY patients feel forced to self-treat, yet they are also condemned for doing so.
All-in-all, we still have a way to go, baby, and especially with the doctors we try so hard to get help from…but can’t.
P.S. Are you brave? Walk into your doctor’s office with the STTM shirt. And here’s how to find a potentially better doc.Â
Have you guys looked at thyroidmom website? I am getting some help from this….although you may have helped me with the erfa…I dont think we have this…I am not taking anything because I get too angry! Dont put any faith in U.S. docs…they suck also. Mine just told me hormone cannot make you angry…impossible. I did not take it for 6 weeks…took it and one day later..psychotic again. I have no idea what to do. Thank you for all your replies they help…yes I am in the united states and suffering because nobody really gives a flying f…!!!
Susan, this may help: http://www.stopthethyroidmadness.com/ndt-doesnt-work-for-me
Dear all,
I’ve been taking the NDT (50microgramm 2x day) for over a year, now I feel much better. However I my doctor won’t prescribe me more, so I decided to add 100 microgram a day (Prothyrid t4: 100mcgr) + t3 (10mcgr) + t3 (5mcgr.: thybon). So I take 225 mcgr. Thyoridmeds: 200mcgr. on t4 and 25 mcgr. t4.
It sounds a lot to me. I am worried about my TSH (even if I probably shouldn’t, but I need reassurance from you).
TSH< .005 (norm ,27 – 4,20), ft4 1,40 (norm ,93 – 1,70) ft3 3,66 (norm 2 – 4,40).
I don't have any hyper symptoms. And my hyposymptoms are almost gone: except for lack of energy and weight gain 🙁
What do you think about my lab values,especially my TSH?
What about bone density and am I doing it right?
Thanks for any advice
My hypothyroid symtoms returned within 5 day of starting the reformulated Armour. I had been doing great on the old formula with complete relief of symptoms on 60mg(1gr)qd which I had been able to stockpile for a year by reducing the dose. Now I feel horrible with all of the hypo symtoms returning plus stomach burning and bloating from the cellulose I assume. Something in the new formula has reduced the efficacy of the medication. I recommend that everyone inundate Forest Labs with complaints and urge them to revert back to the old formula. The # is (800)678-1605 x66297 and ask to file an official medication complaint. A nurse will be brought online to record your complaint information for the record. If enough of us complain they will have to take this seriously.
The biggest problem with doctors (in this case, Endocrinologists), is that they refuse to listen to their patient, they refuse to treat the patient based upon symptoms and, most important – they refuse to THINK! They just treat you based upon the protocol they were given in Med School. The patient’s symptoms are not taken into account, nor does the doctor consider other factors provided by the patient. I suffer form a neurological disorder which affects the endocrine systemn, and also take pain meds which suppress the endocrine system. Unfortunately, the four Endocrinologists I went to – knew nothing about the fact that narcotics supress the endocrine system, nor did they have a clue about the many symptoms I was having. Amazing! How can someone who specializes in the endocrine system – this is ALL they do – and yet have scant knowledge in that area? I gave the doctors a typed list of the symptoms I was having and also provided a list of the meds I was taking, and the package inserts for the meds (which discussed the suppression of the endocrine system). Each of the doctors threw all of this info to the side without reading any of it, and then proceeded to tell me that my was a puzzling case and it was going to be very hard to treat me. I informed the doctor that all I needed was to supplement the endocrine system with meds, since it was being supressed by my pain meds and my disease. The doctors refused to give me anything. I finally found an endocrinologist who was willing to work with me — she gave me Armour Thyroid and prednisone (a small amount to “kick start” the Adrenal). The prednisone was only temporary. I am now wide awake, no more fuzzy thinking, and most of my symptoms have disapeared. We are still working on just the right amount of thyroid med, but we are almost at the finish line!
I get very very bitter when I think about the two years I suffered needlessly, when the doctors refused to give me thyroid meds, despite all of the evidence showing the necessity for same. I was sleeping constantly, passing out continually, gained 30 pounds, felt sick all the time and thought of suicide constantly. I was all so needless! I just don’t understand why doctors are so unwilling to prescribe thyroid meds – it’s not like they are a controlled substance – it just doesn’t make sense. I have come to hate and despite doctors, because they just do not care how much their patients suffer – they are incredibly cruel, and for no reason. Until we pass new laws to hold doctors accountable for their negligence, the helpless patients will continue to suffer.
I have been on 50mg of eltroxin since last sept, and i still feel the same cold very easily, tired, headache and much more got thyroid checked again 8 weeks ago and doc says it okay but i still feel like crap . Any advice be welcome
(From Janie: http://www.stopthethyroidmadness.com/t4-only-meds-dont-work For feedback, use patient groups: http://www.stopthethyroidmadness.com/talk-to-others )
gabriella,
I am wondering what dosage you are on. I started erfa in March 2010, ordered 100 , 60mg tabs and seemed to be getting better. pushed it up to 90mg, felt ok but was told to drop it down ’cause TSH was .01 something. Still seemed ok ,I now ordered the larger batch of 300 still 60mg , taking it 1x day.
About 2 weeks later my hair was DRASTICALLY falling out.
Right now, I an on 90mg again b/c was tested end of Sept by my GP and my TSH was up to 6! Interesting! This is when I developed a rash on my neck AND my scalp hurts- thats when I know my hair will DUMP out of my head. extreme hair loss for 3 months and now the rash.. I am thinking that the new batch may either be contaminated / not as effective/ or could they have changed the formula as well and are not telling us?
Since you started on erfa in may and I started the 2nd batch around the same time, could there be a correlation? BTW, I did call cross border pharm. where I get the
erfa thyroid and they have not heard of any complaints. I am going to call ERFA directly today to inquire. Meanwhile I stopped taking the meds for 4 days now and took off work today to see if there is a change in the rash.
I am sorry you are feeling badly. there are other symptoms like fatigue etc. but too long to list . Maybe compounding formula will help. this may be my next step.
(From Janie: Amanda, this has nothing to do with the batch. It has to do with allowing a doc to first dose you by the TSH, which naturally goes low on desiccated thyroid and is not hyper. Second, you could have low ferritin and an adrenal problem. http://www.stopthethyroidmadness.com/ferritin and http://www.stopthethyroidmadness.com/adrenal-info Join patient groups for feedback: http://www.stopthethyroidmadness.com/talk-to-others )
Well, I’m at a loss as to what to do next…I ordered the ERFA and feel horrible. Some symptoms left, but honestly, i’m dizzy, tired, not motivated, etc. I have to chew 5 of the pills the pills up to even get them to work and they don’t really work not to mention later in the day I have supplementing w/iodine, selenium, etc. and while there is a little boost, basically I feel like crap and I’m angry and flat emotionally. I’m sick of this and really don’t know what else to try next. I’ve been on everything and honestly the only thing that ever worked was the old Armour.
(From Janie: You are probably here: http://www.stopthethyroidmadness.com/adrenal-info )
Dear Gabriella, Have you found anything that helps. Old Armour worked well for me Just recently tried NP Thyroid and didn t work back to New Armour. Used to feel a boost but not any more. Sometimes I drink a lemon water to get stomach to absorb better. About 5 hours after taking start to feel groggy. Take cinnamon to help with blood sugar. Fish oil. Emergen C drink Magnesium Zunc Garlic gel caps and a Dhea compounded time release. Feel headachey nausea took another Cinnamon. Helped. Sometimes ibuprophen helps. Had thyroidectomy in 2000 for Pap Cancer. Now eyes hurt. Trouble focusing. Am 69 yrs old now. Also take Vit D. Will take another Armour around 5 pm and a 3rd grain in the evening. Just don t think it is absorbing. Take a Enalapril before bed for blood pressure and a Bayer aspirin. No energy can t think. Selenium helps.
Karen, NP Thyroid works well. Sounds like you didn’t use it properly. Study this page: http://www.stopthethyroidmadness.com/natural-thyroid-101
I was on the re-formulated armour for three months. I hit bottom. I had gained 60 lbs. dizzy, sick, had all the symtoms. I called to tell the doctor not to call another perscription until she could check my blood work..It was totally out of range..She perscribed Cytomel generic, Liothyronine…She had me go back in two weeks, I had lost 17 lbs., and was starting to feel somewhat better…I have now lost 27 lbs., and feeling great..We all have our own chemistry so some things work, others don’t..I thank the Mary Shomons site, and the bloggers, for helping me understand others were having the same symtoms..and what to ask for with bloodwork! I also never knew the foods you should avoid on thyroid meds..Its all working now..Good Luck To All!
I have been hypothyroid for over 10 years but never had a problem until last year. I have Hashimotos – my TPO is over 3,000. When I was first diagnosed, Synthroid caused seizures for me so I can’t take that. For years, I only took Cytomel. Finally in Dec, I got someone to prescribe Armour and am now getting Erfa. None of my tests are even in range let alone optimal & I am having trouble getting anyone to up my dose.
Last week, I saw doctor the sixth doctor in 11 months trying to get treatment. I took the name from the Armour site thinking he wouldn’t have a problem with desiccated thyroid. He never heard of Erfa. He doesn’t like Armour and did not understand why their name was on that site. He never heard of Cytomel. He apparently did not believe me that Synthroid caused seizures for me because that is what he thought I should be taking. I finally stopped him & said it was obvious that he could not help me so there was no point in either of us wasting our time. The stupid jerk sent me a certified letter saying that I should look for another doctor “because of my unwillingness to follow instructions and your leaving abruptly from the office.” That was the only time I had ever seen the jerk. Normally, I would just walk away but I sent him a letter letting him know that I thought he was an arrogant jerk – and yes, I did say that in the letter. Here is what my letter said:
You could have saved yourself some money and not bothered with the certified letter as I had no intentions of ever returning to your office. You are an arrogant, ignorant jerk. You obviously did not hear what I said to you before I supposedly “abruptly left” so I will repeat it in writing “You are obviously not able to help me so there is no point in either of us wasting time.” There was no satisfactory relationship to begin with – I thought you were an arrogant jerk less than one minute of your coming into the room.
There was absolutely no unwillingness to follow instructions. I will NOT take a medicine that has caused seizures for me and that fact has been proven by a neurologist. That neurologist has very good credentials, something you obviously know nothing about. Nor will I take statins when it is a proven fact that thyroid problems cause high cholesterol.
There are plenty of good doctors out there and I will not waste my time on morons that should not be practicing medicine. I know the difference between a good doctor and a bad doctor and besides being an arrogant jerk, you are a bad doctor.
Living in the USA is easy in one sense. Despite medical assurance not being accesibble to lots, and the elevated cost of Blood Lab Test, you can move into finding a good holistic doctor, (i’ve seen many and very good in differentes websites) and treat your condition analyzing all. I live in Argentina, and it’s hard to find open-minded doctors related to thyroid. Traditional medicine is the way, and TSH, T4, T3, T4L, ATPO and ATG is the more i can get. (RT3? FT3? FERRETIN? Vitamin D? Vitamin B12? Dissecated? Not a chance!) Today i came to a doctor that is like the top of the top on thyroid matters. When i show him all the material i get: “Do you want to teach endocrinolgy to me?” “Maybe you’re stress, i have a TSH of 2 and my hair falls, my skin is dry and i’m very tired, stop trying to associate all of your problems to the thyroid” “This is wierd. You have an obsession because knowing all of these test and asking me what test you want to do”.
I’m only 20 years old-male, and with “Subclinical hypothyroidism”. Having a LOT of hypo simptoms… i don’t know what to do, i know if i can travel to the USA i have lots of doctors to see.
Cheers
I feel SO fortunate! I found a NP who (gasp) listens to me!
I went in last time and told her I was feeling great and didn’t think I needed to be tested every 7 weeks. She said “really, because your numbers are telling me that you shouldn’t be feeling great”.
We had a misunderstanding and she didn’t know I was still taking my T3.
Ultimately, she said “I don’t see any reason to change your meds based on your numbers if you’re feeling this well” and we left everything alone. So I have a spring in my step, the depression has lifted, I don’t take many naps anymore and when I do it’s because I CHOOSE to not because I HAVE to and they’re about :45 instead of 3:00.
What had me feeling so well was that her MA told me that she’d found out how to get Erfa and we didn’t have to try to make due with Levoxyl and T3 since we couldn’t get Armour anymore (and quite frankly, since the reformulation it was only working marginally better than Levoxyl).
And I gotta say: Erfa kicks Armour’s A$$! I am thrilled with Canada and their lack of FDA!
I think my husband may have adrenal fatigue.
Blood work done years ago and he was on the lower end but not in what they consider a danger zone.
Doctor and nurse were up front about what they have seen and how they thought. It was about the terrible side effects that happens to people on treatments with steriords?
So we did nothing. Not wanting to harm other parts or organs of the body.
How do you self treat with HC? Do we start at health food store. What do we buy or look for.
One note about him. He has alergies, out door stuff mostly. Feb. is bad, tree pollen. Top of eyes get dark and he can not move.
I make a call get pednisone pack or pills for him. This has become a yearly thing now. He takes for the amount of days allowed. He fells so great and has relief from pain and more engery. Is this a clue? But then it will be a bummer when meds are gone. But it has left him stronger.
Wonder if a very low daily doseage is needed, would it be good for him and do no harm. It is such a boost when used around Jan or Feb.
Any ideas out there?
One more thing we have both changed from Thyroid usp to Erfa this week. I need 2 grains and he needs 4 grains to keep blood work normal and not go hyper.
Before that on the RLC maker of thyroid and husband did not do well.
Why is this my first time to read they screwed us too by changes in their formulation? My husband kept telling me he did not fell good on Nature or Westhroid.
We are so tired of feeling sick and being in pain. Sometimes we do not know what the cause may be. Then we read again the makers of our drugs have changed the content. Did RLC mention this. I do not think so.
So are husband and I back to the thyroid being our main issue for poor health and daily pain?
Let’s see how many weeks or months do we need to wait too find out from our body?
Yes get on the Natural thyroid and adrenal Yahoo group with Valerie as one of the moderators. They will help you. There is no reason not to get the help you need, now. The longer you go the worse you will feel, I went hypo last april from the Armour debacle, had a misscarrage lost hair, got so sick. I am still recovering. Dont go there. Get to that group now.
I hear ya. From the day after my first appointment with my new thyroid doctor he wanted me to start on 1 grain of natural desiccated thyroid as well as the 100mcg of levo-thyroxine I was already taking before any of the lab test results came back (he ordered all of the tests recommended by STTM and more except the saliva test for adrenals – he wanted to see what the am/pm blood test said first) and despite my better judgment (from all I have learned from stop the thyroid madness) I went along with it. Needless to say I got VERY BAD adrenal symptoms almost immediately so I dropped the levo-thyroxine as directed and continued on 1 grain of NDT for 2 weeks. At two weeks on ndt I went to my follow up appointment where I got the results of my blood tests. To cut a long story short I was deficient in MANY things but my TSH, free T3 and free t4 were all normal… he acknowledged we could raise the free t3 level it a bit higher. He wanted me to raise my natural desiccatted thyroid from 1 grain to 1.5 grains by taking 2 grains in the morning one day and 1 grain the next. When I expressed my concern about getting adrenal symptoms from adding 1 whole grain to the 1 grain I was already taking he told me I shouldn’t as it takes 3 days to get into your system when I know from experience it does not – I could feel it working almost immediately at first, nevertheless I accepted it and went along with it. I asked over the phone for a script for 1/4 grain capsules so I could increase it more slowly which I did and this worked (I increased it to 1.5 grains over 6 days). My cortisol blood test results came back normal but judging from the symptoms I was experiencing he decided to order a 24 hour saliva test for adrenals along with a number of other hormones which I could not do for another 3 weeks because I had to wait until day 21 of my menstrual cycle. I have only just sent this in. I was put on a herbal supplement for adrenals – this has not helped even nearly enough. When I tried to increase my dose of ndt to 1.75 grains I experienced bad adrenal symptoms that did not go away after 5 days. These were not symptoms I needed to be experiencing due to other MAJOR stresses going on at home which I have currently escaped by going to live with my brother for 1 week. So it’s been over 6 weeks now on 1.5 grains of NDT, needless to say I have BAD and WORSENING hypothyroid symptoms and adrenal symptoms. I am STILL waiting on the 24 hours test for adrenals results and I am STILL waiting on my reverse T3 result – apparently they are short of the reagent used to due the test at a MAJOR lab testing facility in Australia. I strongly feel I should have stayed on levo-thyroxine (I was better on it than I am on NDT for the moment). I am currently unable to do the things I would usually do (including contributing to thyroid groups online – writing this has been very difficult to concentrate on). Moral of the story – just because a doctor is good (I do believe he is good)and knows about NDT, reverse T3 etc) and has helped many, many people does not mean you can’t request to be treated differently for your thyroid problem in a way you believe will work best for you. I strongly REGRET not trusting my judgment and following the STTM ‘golden rules’ (things we have learned and mistakes patients make) and I will be doing so from now on. My doctor does not seem to mind me questioning him or requesting different treatment… it’s just a matter of me having the guts to do so. Sometimes, you just have to trust your judgment and do it – just ask the questions and give your reasons! 🙂
Thank you for ALL of your time and effort, Janie. I have been self treating for almost three years now and have been feeling ok about it but want to have a baby soon and am scared to be handling all this myself, especially knowing that my doctors all want me to get off of HC. I haven’t been able to find a doctor yet who will treat both my thyroid and my adrenals and I’m really getting concerned about whether or not I’ll ever find one or if I’ll get pregnant and still be on my own! 🙁
Any ideas for me?
I’ve been on .25 of Syncrap for 7years. For the first year I felt great, the best I ever felt in my whole life. Shortly after I had gotten pregnant and had my 4th child only to find out she was born with multiple birth defects. After that from the stress of it all it was all down hill and I have days where I just feel like I’m suffering inside. My BP is high. I tell my doc about adrenals and she blows that off and puts me on BP pills and diagnoses me as having anxiety( NOT!). I tell my ENT , they blow me off and tell me its something else, as my symptoms can’t be from the goiter I now have from my poorly undertreated thyroid. Let’s rip that out.
Between me and my daughter I’m so sick of doctors, so sick of getting them to listen to me and help that I feel like I just can’t take it anymore.
I’m like another poster where I’m just plain out of money and am trying to scrimp and save so I can treat myself because evidently doctors don’t have a clue.
Why don’t they listen?
And guess what? 7years later I’m still on .25 of Syncrap!That would be great if I was, what, an infant??!!
i made an appointment with a high profile doc on Mary’s top doc list who prescribes NTH, paid $650 for the initial visit and $250 for each follow up after that, only for him to push my complaints aside saying things like, “you can’t expect to take a pill and have every ache and pain disappear.” When i informed her of my opinion that this doc is incapable of adequately treating thyroid she wrote me back with no clear answer about editing the listing. in fact, over eight months later his name still remains listed, with no additional comments or updates. i also attended her one day seminar in new york with two other friends and we were told to bring bloodwork results as each of us would meet with someone to go over everything. no such meeting occurred. while there was some useful information discussed, i can’t say it was all that i expected.
I am unapologetically self-treating. I don’t have the time, patience, or money to hunt down a good doctor. Maybe someday when I get it all figured out I’ll try to get a doctor on board w/ the progam I figure out for myself. I think it’s ridiculous to have to go to a doctor and try to get them to do for me what I can do for myself!
How are you self-treating? What supplements or medicines do you use?
Still treating myself and feeling better for it. I am staying away from the “Save Natural Thyroid” facebook page.
They are not what they used to represent. Now it’s mis- representation. They encourage everyone to follow their docs orders regardless, encourage use of T4 only drugs, and will not talk about adrenal fatigue or other contributing factors from T4 only drugs. And my struggle still continues today in finding the right doc or n.p. to work with. Gennifer
My doctor is still clueless. She won’t do anything but the TSH. She ignored me asking for adrenal tests. Then she sent me to a quack endo who didn’t know anything about Hashimoto’s and said it was just inflammation and I should take Aleeve for it. My doc still has me on Levothyroxin. I feel like crap on it, but it lowered my levels and I’m not in danger of losing my thyroid right now. But I feel horrible all the time. I have the cold tongue and fatigue and pain all over. I know I’m being undertreated and not being treated right. But I can’t go doctor hopping here, they all suck. I just feel stuck. And I’m out of money to be ordering my own stuff. It’s just a bad situation. I even showed my doc info from this website and she acted like it was junk. She’s useless and thinks all she needs to do is monitor the TSH every three months. She ignores all my symptoms.
I feel the same way, quacks, no money to get the right treatment.
To add to all the questions and difficulties, yesterday Mary Shomon posted a “shame on you” letter to tell everyone they better be working with a doctor. They should never treat with out a doctor’s orders, etc. It was very discouraging to read her tirade as I was left wondering who she is working for, really who is she working for?
I work with a doctor but he only knows half of what he should know to treat me properly, so I must educate myself and learn as much as I can for myself to really get well. For example my doctor looked at my recent thyroid labs which had a RT3 result only because I asked for it and told me all was well. When I presented my results to Val she said I definitely had a RT3 problem my ratio was 12.5.
The minute she said that a light bulb came on, that is why I have never, in more than 10 years, been on the optimal amount of syncrap and now even on ERFA I am unable to get rid of hypothyroid symptoms. My body can’t use it properly until I take care of this RT3 problem and no doctor, for more than ten years (and all having been Mayo educated), has been able to treat me properly. If I do what Mary Shomon insists we do I would stay sick forever, so I must continue the good fight and educate myself. I just want to thank you for making a difference through education, encouragement and empathy.I like your style Janie.
I had to stop following an about.com advocate’s Facebook page, she is a drug pusher. This is the only site that has a clue! Thank you STTM!
You rock, Janie !! Thankyou for everything you do! : )