Tonight was a beautiful night to do my aerobic walking. It had poured this afternoon for 30 minutes, so the early evening air was slightly cool and very clean.
And on the last leg of my journey, I stopped and said to Carlin as she was walking out of her front door “Where you have been lately? I haven’t seen you out walking with your husband.”
Carlin and her husband Clint are probably in their late 70’s–both vibrant individuals and frequent walkers in the same area.
“Well”, she said wistfully as she glanced down the street I had just walked, “I have to go in Monday for a Pacemaker.”
Turns out she has fibrillations and other heart issues, and even walking from her bedroom to her living room can exhaust her. I told her how well my mother-in-law has done with her pacemaker. She told me she’d be in the hospital for at least 3-4 days for the surgery and observation.
And as we were chatting over the low white fence, I couldn’t help but notice the scar on her neck–the same scar my own mother had from the removal of her thyroid years ago. And the rest of Carlin’s story, and the reality of her story, made me want to punch the nearest electrical pole in disgust.
Carlin’s thyroid was removed over 40 years ago. She remembers being on “2 grains of something”–clearly it was desiccated thyroid. And she says she felt really good. But she wasn’t on it long, as her doctor removed it and put her levothyroxine over 30 years ago. You know, that “new and modern” T4-only CRAP which doctors fell for like the blind following the blind beginning in the 1960’s until today. (The story behind the introduction of T4 onto patients in the early 1960’s is in Chapter One of the STTM book)
So I knew. Her heart troubles could be one of the many side effects of the inferior treatment of T4-only medications (which also include Synthroid, Levoxyl, Eltroxin, Oroxine…all of them). My own mother suffered the same fate while on Synthroid her entire life. And patients chat about this all the time on thyroid groups–heart issues while on T4.
I started probing. She has had issues with high blood pressure. Another typical side effect of the crap T4-only medication, and which is removed with desiccated thyroid. She has had issues with depression–another typical side effect of the crap T4-only medication, and which is removed with desiccated thyroid. She talked bitterly about the slew of medications she’s had to be on for years to counter all her problems, and which had given her bad side effects.
And the next worse thing she told me? She had acid reflux so bad a few years ago that they did surgery on her stomach. She had surgery for a condition which is VERY common with thyroid patients who are on T4 meds–low stomach acid from a lower metabolism, which causes acid reflux. i.e. a symptom of continued hypothyroidism which is CORRECTED when on desiccated thyroid.
It was hard to contain myself. Here was this vibrant, life-loving, intelligent woman who has been on T4-only for over 30 years and has endured health problems, surgeries, side effects from all sorts of money-grubbing pharmaceutical pills, and now, has to go in Monday for a pacemaker. And in all probability, most of what she has gone though could have been prevented if some doctor had been WISE enough to keep this woman on desiccated thyroid.
I am livid and sick to my stomach.
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- Are you chewing up your Armour or Naturethroid? It will make the treatment far better, as it will release the desiccated thyroid from the excess cellulose. If you are on compounded, you need to tell the pharmacist to stop using cellulose as a filler. On Erfa? You can do it sublingually.
- If you are reading this right on STTM’s blog, and would like to be notified of each blog post, just sign up to the left and under the links.
- Have you done labs and found yourself with high RT3? Get off Selenium for the time being, as it can help convert T4 to the RT3 along with the other reasons you make too much.
- Want to spread the word about far better treatment? T-shirts and bumper stickers are here.
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9 Responses to “A continuing MEDICAL SCANDAL which is just too close to home and I grieve. WAKE UP DOCTORS!!”
Sandra
Oh, my gosh, that poor poor soul. If it was there mother would they really do all those things to her?
I need to read this to my mother to convince her. She is in her 70’s and is still sloooowly recuperating from pneumonia. She has been hypo and on synthcrap for over 30 years and 1 1/2 years ago had a double surgery for 1/2 thyroid removal and open heart for a thymoma (lump in her chest) at the same damn time. She struggled badly to recuperate from that operation and made it only half way .She also recently developed Myasthenia Gravis a rare autoimmune disease. After her surgery she was never given any thyroid hormone and wondered what was wrong 1 year later. I convinced my doc who put me on NTH and HC to give her a low dose of synthroid short term until we tested her adrenals and he said her results showed she was IN RANGE! and won’t give her any Hydorcortisone. Now she has palpitations and a racing heart rate but her blood pressure is fine. She is bed ridden. Also she now has a swelling in the other half of her thyroid, has severe acid reflux that she has to treat with Nexium which she has tried to stay off of but just got such bad heartburn had to go back on it. The pneumonia and myasthenia caused her to have extreme coughing fits that she could get her breath and she felt as though she was suffocating/couldn’t get air into her lungs. Once she was on a puffer and anitbiotics it subsidede but now that she is at home she has extreme anxiety over this experience and has extreme fear it will happen again and she may not make it if it does. She is too depressed, tired, confused, to hear what I think is wrong and let me help her so she just sees her regular MD who only tests TSH. I have learned so much from Janie STTM, Val, Sam, Darla and just know what is wrong but am helpless. I am a thyroid cancer survivor, 1994 and have made the switch to NTH in Feb and am on HC and am trying to get my own life and energy back after the last 6 years of hell so I’m doing my best to help her with the strength I have and with the incredible support of the thyroidless and adrenal groups.
I owe her my life and need to find a way to help her, maybe this very sad story will let me do that, thanks for sharing with us Janie.
Sandra
Laurie
I am new to this forum, but not new to thyroid issues. I am a 49 year old female in Michigan. I had 1/2 of my thyroid removed 15 years ago due to a goiter. At the time had weight gain, tiredness, dry skin, lack of clarity, memory loss – all the major symptoms of hypo.
After the successful removal of the goiter and a portion of my thyroid I’ve been on synthroid ever since. Notably, I cannot take the generic, Levoxyl as it has an even lesser affect.
Although I felt the best I had in many years, my doc reduced my dosage over two years ago. Hypo symptoms returned. I increased my synthroid on my own to live a normal lifestyle. Doc was very upset. I asked about armour and he flatly refused. Said it was not as controllable as synthroid.
Last year my cholesterol shot WAY up. It’s always been low and I’ve received a smiley face on my annual physical; in fact other than thyroid problems I’ve never had as surgery or major health problem. I’ve been seeing an excellent chiro for the last few years. I was feeling sick one day per week for six weeks straight – down in bed due to tiredness. My chiro asked about my thyroid. She recommended a product called, “Thyroid Activator” stating she uses it although she is not classified as hypo, she has all the symptoms, too. Began taking it and within 24 hours felt the symptoms lift, had lots of energy like I used to and lost the bloated feeling I had for the last few years on synthroid. (Still taking synthroid as prescribed)
I go in for my annual check-up next week. Unfortunately, due to an upcoming job loss I will no longer have health insurance beginning 10/1.
As you see I am under a time line here to ask my doc to take the proper additional tests and request some type of desiccated thyroid.
Would someone mind typing out the exact questions I need to ask him and requests for tests I should be making of him? If he refuses to see things my way I’ll need to get into another doc who may be more open to my requests – but again, Oct 1st = no insurance coverage and I don’t have the ability to pay out of pocket for my health care. Any information is greatly appreciated!
Thanks!
~Laurie
(From Janie: I think you’ll get the feedback you need by joining patient groups, and specifically NTH: https://stopthethyroidmadness.com/talk-to-others Also read these (which are also in the book with more detail if you have it to take with you): https://stopthethyroidmadness.com/dear-doctor and https://stopthethyroidmadness.com/recommended-labwork and https://stopthethyroidmadness.com/things-we-have-learned )
Michelle
Reading this made me so upset. What is WRONG with doctors? Do they not take an oath when they become doctors that they’ll do no harm? We are all telling the same sad story here of how we’ve been treated when even DARING to question their so-called “expertise” when it comes to thyroid meds.
You would think after 100s of patients say the same thing that they’d at least consider another point of view instead of just pulling out Ye Olde Prescription pad again to prescribe yet another medication to counter symptoms caused by the first one.
It is absolutely disgusting and more people need to wake up about the sorry state of our health care systems. The problem right now is that unless you’ve been through this kind of hell yourself, you don’t understand how it is. I’m at the point where I will do anything to avoid a doctor visit – just thinking about it fills me with dread. My family sort of think I’m nutty for going against the grain with my “alternative” treatments (natural thyroid + iodine, etc). Nothing I say changes their mind about doctors – they think they are Gods or something. Meanwhile they sold their souls to the pharma companies a long time ago and we are all suffering.
Michelle Vincent
I told my endo I felt anxious, that I couldn’t “settle down” on synthroid, that lowering the dose doesn’t settle me down and then more hypo symptoms…I also discussed that I felt like something is in my throat. Having had thyroid cancer 2 years ago, we had another ultrasound..nothing suspicious. Well, she said maybe you have acid reflux. How could she not relate the symptoms I discussed with her to lingering hypothyroid? It’s ridiculous malpractice…”Lord please help me to instill in my children an ability to see beyond the obvious and use some darn divergent thinking..”.Do these doctors ever read more about their speciality other than what is printed in a textbook? Urgh,
L. Morgan
I had “Inexplicable” depression for about seven years while on Synthetic. It lifted after I started Armour. The doctors wouldn’t listen to me and I kept being given antidepressants and antianxiety meds. I still have anxiety issues, but no constant, daily depression. I know synthetic caused many other problems for me (i.e. stomach issues, etc.). It’s criminal…
Ria The Deer
I feel for Carlin and yet at the same time feel scared for myself. 3 years post thyroidectomy and suffering with T4 only and a sore foot from kicking doctor’s butts, I wonder will my own tragedy continue for another 30 or more years? I don’t think I can do it. My heart has Atrial Fibrillation, (found from my insistence to wear a Holter Monitor for 24 hours and proved to them that it wasn’t just anxiety!)I get depression severely when they say to lower my dose, I go cat on a hot tin roof when they say go up a dose. Waaaah!
Aussie doctors here aren’t any smarter than Carlin’s USA doctor. Sigh…. wish her luck from me!
Andrea
I chewed the desiccated once and that was a NASTY taste in my mouth and haven’t done it since. My mood has gone south and I can’t convince the doctor that WE found to let me have the bouncing off the wall feeling again which I now equate to being happy. Weight is still a problem. Now I produce too MUCH male hormone yet I still stress like crazy. Still on blood pressure medication and having problems sleeping at night.
DC I was on Synthroid for over 10 years. I hope I can reverse the damage it has done. I am 40 now and was diagnosed hypothyroidism at age 30ish. I do NOT want a pacemaker.
DC
My poor Aunt is the same way. Partial thyroidectomy at 20 (now 62) diabetes, several ? heart conditions, tons of drugs, operations, etc, etc. My heart does some weird things which is better since starting dessicated thyroid. I just hope I didn’t wait too long to get off that garbage Synthroid that it can’t be reversed. 🙁
Oh, then my Mother tells me that her Mother had a goiter and never did anything about it. :-O Where was this information 25 years ago? She died of a heart attack at 58.
Laurel
Similar thing happened to my grandmother-she’s been on the same dose of armour since 1955 or so, and then, all of the sudden, her TSH was ‘too low’. Her dose was cut, and in six weeks, she was on cholesterol, anti-hypertensive…s, diuretic and reflux meds, and diagnosed with congestive heart failure. Pointed out to her that this all came on after her thyroid was reduced, and she demanded it be returned to her previous dose.
Voila, everything went away. Doctors were ‘shocked’. *eye roll