Suffering on Synthroid: imagine how horrific it was before the internet

Elizabeth Alexander 1959

I think back about my mother.

At age twenty-one in 1939, she had most of her thyroid removed due to Graves disease and hyperthyroidism. Because a small part remained, hyper set in once again by 1960 complete with bugged eyes. So Radioactive Iodine I-131 was the next step to once-and-for-all annihilate the thyroid.  Not long after, as her thyroid hormone levels fell, she was one of the early victims of the “new and modern” T4-only medication called Synthroid.

And all hell broke loose. Depression enveloped her everyday life—one of her worst lingering symptoms of hypothyroidism due to the shoddy treatment of a T4-only med as well as the TSH lab test.  I remember her moods, her frequent anger and lack of patience, and her constant counseling appointments.

By 1963, and right before President Kennedy was shot, she submitted herself to Electric Shock Treatment in a futile effort to control her depression.  What a crock.  She was never again the bright and quick-witted woman I remembered as a younger child. Her brain was fried and she had a new dull flat reaction to life. And for the rest of her life, she lived on her antidepressant/anti-anxiety med Elavil and had daily constant naps, weight gain, rising cholesterol, dry hair, heart surgery, stiff joints, brain fog and inability to stand on her feet long–her own manifestation of lingering symptoms while on the lousy thyroxine.

And she did the T4-horror show…all…by…herself. No internet,  no patient groups and forums, no Stop the Thyroid Madness website, blog or book,  no good doc, no thyroid Facebook or Twitter groups, no other good thyroid books or websites. Nada. I came along as a Thyroid Patient Activist too late for my mother, who died in 2003.

It makes me shudder thinking of that lonely hell. But then again, it’s not just in the far past: it happened to her only daughter, me, for nearly 20 years. Complete lonely hell of my own with intense and disabling Dysautonomia induced by my continued hypo state while on Synthroid and later Levoxyl.

And today, because the mass media or any media personality refuses to speak the truth of the 55 year scandal of T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, or the cuckoo’s nest of the TSH lab test and range, HUNDREDS OF MILLIONS of individuals still suffer. How stupid can they get.  This is a scandal that has effected a huge mass of individuals globally, past and present,  including those today who STILL linger with undiagnosed hypothyroidism thanks to the worthless TSH lab test or lingering hypo on the lousy T4-only medications. And all the above when we, as patients, have learned a far better way to treat our thyroid problems

Did you have relatives like my own Mom (who died in 2003) who lived the T4-only scandal alone?  Use the Comment form to tell us about them.  Have YOU suffered from a T4 med? Report it to the FDA here.

Also below, read about Jane Pauley and the health issues that make you wonder, since they can all be connected to a thyroid problem, either undiagnosed or untreated.  Below that, you’ll see posts about Oprah, Reverse T3, the problem of cellulose in our meds, the desiccated thyroid shortages, and more.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY present. A card will be included, and the book will be in an envelope with a red bow!! Save money the more you buy!

22 Responses to “Suffering on Synthroid: imagine how horrific it was before the internet”

  1. Enrique

    So sad about your mother and Synthroid. I was on it for 18 years and now off it for a month! I found out I had high RT3 and I’m now on T3 only hoping to eventually transition to Erfa Thyroid . Thank god for the internet!

    Reply
  2. Jon Ewens

    Keep up the good work Janie. You are an inspiration for all of us. Never quit! I see things beginning to change in our favor.

    Reply
  3. May

    Come to think of it, my Mom had a subtotal thyroidectomy done in her late 30’s, and it wasn’t too long after, she began getting terribly moody & tired, gained weight and I can remember her saying she didn’t think the “thyroxine” she was given was working. In retrospect, she has never been the same since. She also has terrible osteoporosis, and her quality of life has greatly diminished.

    Like the stone cutter, hammering away at his rock, perhaps a 100 or more strikes before there is a visible crack, we will persevere. Humbly I say, Thanks Janie for ALL you do,

    Reply
  4. kendra

    who said they see “progress?” maybe amongst active searchers in hopes that there is more to life. But Im scared, all i see is a huge Government wheel that wont budge or listen and its crushing our supply of dessicated thyroid. Why wont they listen? I have to get my meds from Canada, Canada! A med that I need to live I cant just run to my pharmacy nooooo, isent there something wrong with that?

    Reply
  5. Jane C.

    Kendra – I don’t see “huge Government” as what we need to fear. It’s huge Corporations, i.e. Big Pharma, that has us by our throats. And our spineless elected officials that take huge contributions from Big Pharma listen to them instead of us.
    It’s all about money.
    All we can do is vote with our dollars, and if that means sending our dollars to Canada, then so be it. Seems to me that they care more about those of us who depend on dessicated thyroid anyway.

    Reply
  6. Paula

    This one really hit home. I’m a relative newbie here – I’ve only been researching and hanging around a couple of weeks; and still working on getting my doctor to CALL me to schedule labs. I have some left-over armour from 2008, though, and I started it, started my daughter will be on the Nutrimeds version; we’re both on Isocort, and we’re both feeling a bit better already. I got her labs over her Thanksgiving break from school as well.

    My mother was depressed as far back as I can remember. I also remember her telling me that her temperature was below normal her entire life, as was her blood pressure. And a few years before her heart failure, I remember a conversation with where she just cried, and said she couldn’t remember not being in pain or tired. By then I had been diagnosed with Fibromyalgia, and I hinted to her that perhaps she had it as well. She wanted nothing to do with any diagnosis *I* had. After 10 years of sitting on the couch watching TV and smoking cigarettes because it was about the only thing she had the energy for, she finally had heart failure – and lived about five more years after that, still struggling with depression, smoking, and pain. We of course blamed the cigarettes for the heart failure, but I wonder now whether it was the chicken or the egg.

    Funny thing is, now it’s almost 20 years later – no treatment for fibromyalgia has EVER worked more than a little bit for me; and now I’m extremely resistant to pain meds – even Vicodin doesn’t work well on me. (On the plus side, it doesn’t whack me out either, but what’s left for every-day pain at this point?)

    Worse, my daughter has fibro and all the symptoms, and is struggling in college, despite the fact that’s more than intellectually capable. Last week, she asked me for orthotics and knee braces for Christmas! She’s 19. I cried later; it pains me so much to think that she hurts this badly. She should be asking for slinky dresses and girly things.

    Thank you SO much. Despite the fact that we haven’t yet found a doctor to work with, we’re taking it slowly; but taking charge of our own health. Really, both of us feel better already! I can think of no better Christmas present this year for ME than to think that I can help her achieve a life of good health where she once had no hope. . . . and that she can pass her knowledge on to her own children.

    Reply
  7. Starrie

    My grandmother also had hypothyroidism and took synthroid – and she was depressed, tired, had aching joints, had weight problems, was always cold etc.

    Reply
  8. Sally

    To my knowledge, my mother never was diagnosed with hypothyroidism, but I’m sure she had it. She struggled with her weight, had rosacea, wasn’t energetic, was cold-natured, had food allergies, etc. Those are the symptoms I’m aware she had; I’m sure there were others. From things she said, I also think her mother was hypothyroid. I see the tendency in both my daughters, who are in their twenties. Believe me, I plan to make sure they know what to do and what to tell their doctors so they get decent treatment!

    Reply
  9. Kim

    In March of this year I had a total thyroidectomy and had one enlarged parathyroid gland taken out that the surgeon mistaked in surgery for a lymph gland was diagnosed with micro-papillary cancer. I was also diagnosed at that time with De Quervain’s thyroiditis. It took 7 months before my thyroid levels were even in the normal range as they were constantly either Hyper or too Hypo. I have had so many things show up wrong since and have gotten no answers from the doctors I have seen.

    I developed Livedo Reticularis 2 months after surgery, tightening in the backs of my lower legs near the ankles, severe tendonitis, ocular migraines with no headache, stomach pain, diarrhea, constipation, knee pain, feet pain, lrg pain and scalp pain.

    I am also Vitamin D deficient and Vitamin B12 deficient for which I am being treated.

    I see the doctors so much I might as well live there. Life just sucks after having a thyroidectomy.

    I am on Synthroid 88 mcg’s, Vitamin D, Vitamin B12 shots every week, estradiol and nexium for the GERD that Came with the thyroidectomy.

    I also have a paralyzed vocal cord on the right and a floppy and swollen on the left. It has been 8 months and its not any better.

    I would love if just once if these doctors did their job instead of blowing us off.

    Reply
  10. Andrea

    Was and is. My mother is currently on T4 and she says it’s just fine. She’s exhausted all the time, can’t think, can’t remember things and must succumb to daily naps, doesn’t have the stamina to endure anything outside of day to day chores, and even those can be draining. She can’t handle stress, and has mood swings but mostly lingers in depression. She takes antidepressants, and anti anxiety meds. Her paranoia is so bad sometimes that I withhold information so I won’t have to defend myself. She has fibromyalgia, athritis, asthma, osteoperosis, carpel tunnel that required surgery, and was recently diagnosed with MS. Yet she is convinced that she is fine because her doctor says she’s fine. I think she is far from fine. I have told her about STTM, and about what I have learned, but she doesn’t want to hear it.

    Reply
  11. El

    I strongly suspect my mother has both thyroid and adrenal issues. She suffers from weight gain, mood swings, brain fog – despite the fact that she’s an extremely intelligent person – and severe osteoarthritis. My sister has actually had borderline thyroid function and definite adrenal fatigue confirmed in tests. Yet both resist seeking proper treatment, my mother especially – I suspect it’s a reluctance to confront the problem and embark on the long road she’s seen me go down, and I’m sure this fear is itself a thyroid/adrenal symptom.
    I try to encourage them as much as I can but it’s a fine line before you come across as interfering which could be counterproductive.

    Reply
  12. chris

    my partner had ‘radiation caused papillary cancer’ on the back of her thyroid, and it was removed. After that, she was on synthroid for 14 years, which caused her to develop a heart condition where her heart will sometimes stop for up to a minute before starting up again. She was on a TSH roller coaster for those 14 years! Only a couple years ago, when her doctor switched her to Armour Thyroid, she showed great improvement, and her dosage has leveled out to 2 grains per day. Then the Armour Thyroid became hard to find in the right dosage, next, her medicaid stopped covering it, now, her pharmacy cannot even get it at all, so she has had to find a compounding pharmacy to get it from. The compounding pharmacy is not covered by medicaid, and it costs about 10% of her monthly income just to get this medication she needs to continue living. Recently, she went 2 months on half her needed dose and still ran out before she could get more, due to the cost, and now the closest pharmacy to us quoted a price for 30 days, and sent her 30 capsules, a 15 day supply! she will run out again on New Years Eve, but her disability does not go very far, and that means that she will probably have to go without for another week until her money comes in.
    On another note, she has also recently been diagnosed with fibromialga (after the ‘Armour fiasco’ began), and i have read here that fibromialga seems to be common among those suffering from hypothyroidism. Is there a connection?

    (Yes, and use this: http://www.helpingpatients.org )

    Reply
  13. Patricia

    About the cost of Thyroid at compounding pharmacies — it’s really worth calling different places; the compounded Thyroid varies hugely. I live in the greater Boston area, and found one place in Hopkinton (south west of Boston) that charges $70 for 100 capsules of any size (or maybe any reasonable size, up to maybe 4 or 5 grains). This isn’t ideal for people who want to space doses during the day, but if you can live with one dose/day, 100 capsules is 3-1/3 months worth, which is less than I was paying for Armour tablets (because I had to buy several smaller tablets to make up my daily dosage. Lots of these places will send the prescription by mail order.

    Reply
  14. Samie

    To Dear Janie,

    For a very long time I have wanted to tell you about my Mother. It is difficult and emotional for me to talk about.
    My Mother was always depressed when I was growing up and with very low energy and plus with weight gain. She took good care of her family. During those years my family tried to get her hypothyroidism treated but the Doctors always refused saying she was normal. Her depression and other pathetic hypothyroid symptoms continued and became severe over the years. Nothing was done to help her. They gave her many pills and surgeries during all those decades for all her complaints. Never thyroid hormones. I married and moved far away. I also was having problems with many of the long pathetic list of hypothyroid symptoms.
    I was struggling to survive and raising my children. Doctors were telling me it was all in my head and my family trusted this diagnosis. So when, I received a call from family telling me that in a few hours they were doing “electric shocks treatments” on my Mother for her depression, I pleaded with family not to allow it. They went ahead with the electric shock treatment, trusting these experts. Well, soon only hours later they told me that during this treatment my Mother’s heart had nearly stopped and they had to perform CPR on her. She was crying in pain after and they finally told my family about the CPR and having some ribs broken or bruised.
    This was only ten years ago!…
    They sent her home without further treatment, and she continued to decline for another decade until her very recent death.
    My Mother’s last years were spent in great mental and physical disability in a nursing care facility. She lost the ability to stand or walk. I visited her as often as I could, and I was told she was low in Free T3 and was now treated with Armour thyroid. I was puzzled no improvment!… Why?… One day, during a visit I looked closly at her Armour thyroid medication and I saw that it was Armour on the presciption label, yet Armour was not at all inside that blister pakage. They admitted to me, that It was not really Armour, and refused to tell me what it was. Armour thyroid hormone will not work if it is bogus or a placebo.
    I never found out what it was they gave her in place of the Armour thyroid. She died a short time later of “dysphagia”. Please add this to your long pathetic hypothyroid symptom list. “Dysphagia” is a kind of nerve damage that can occur with poorly or untreated hypothyroidism or other nerve or metabolic disease. Dysphagia causes the inability to swallow fluid, food or your own saliva and this leads to “aspiration pneumonia”.

    Janie, please do a blog about fake thyroid in nursing care facilities and please add metabolic neuropathy (nerve damage) to your long pathetic list of hypothyroid symptoms. I wish you would do a blog on hypothyroid caused nerve damage sometimes called, peripheral neuropathy or metabolic neuropathy.

    Dogs are commonly afflicted with hypothyroidism and they often suffer from severe to mild hypothyroid neuropathies; there is some interesting information to see on the veterinary sites and in vet med textbooks. Hypothyroidism in dogs is similar to humans yet so often missed there, also.
    Janie, I’m so sorry about your Mother and mine, and so many others we cannot begin to talk about here. I must go on now. I wish I could do more to change this terrible situation, especially for our daughters. I have taken Armour thyroid for nearly 30 years. Now, I have lost it, had it taken from me without any feeling or compassion for my suffering.

    Janie, I must be truthful, I am not doing very well and so far Erfa thyroid is not helping me. I am now sitting here wrapped up with the heat up and shivering with icing cold fingers. More neuropathy (nerve damage for me). Someone please help us, God help us….

    Love you Janie!!!

    (From Janie: I am so sorry to read about your mom. I have added that symptom to the long and pathetic list of hypothyroid symptoms. And I hope you are talking to other patients about your Erfa here: http://www.stopthethyroidmadness.com/talk-to-others because some just have to raise the Erfa higher)

    Reply
  15. linda jennings

    Hello,

    I have been using synthroid for 24 years. I’m now 46 and have added Armour for about the past year. (that is until the shortage of Armour) I cannot get Armour anymore and without it I feel really bad inside and look bad too. I have gained 20 pound in a years time and now I’m being told I’m diabetic type 2. I’m loosing my hair and going crazy! Always thought that I would at least have my hair.

    I feel like an old fat bald lady!

    I have tried other drugs for T3 but nothing is working.
    I have recently had an operation D&C and have been advised I will need a hysterectomy. I’m so frightened, not over the surgury, but the hormone nightmare and how my already underactive thyroid is going to react.

    Do you have any advise on loosing weight and any info regaurding the thyroid and hysterectomy? HELP!

    (from Janie: Linda, use this page for feedback: http://www.stopthethyroidmadness.com/talk-to-others )

    Reply
  16. Jessica Williams

    I read these letters, and realize my mother too was a victim of the thyroid madness in America created by big Pharma to make many men very very rich. Her life was short: 70 years. She died tired, depressed, worn out, unable to think or hold a conversation. Her hair was dry and her skin brittle. She slep 12 hours a night and took naps daily.
    Now I am her, but I am fighting. Two years ago a doctor who actually does T3 and T4 panels found me to be severely hypothyroid. I was near the myxedema coma. I was diagnosed late. I probably had it for 10-12 years. No doctor found it in their TSH panels. I was diagnosed with fibromyalgia, depression, bi-polar disorder, Chronic Fatigue Syndrome, Heart Disease, Post Traumatic Stress Syndrome, Liver failure, renal failure, and more.
    I am on dessicated thyroid USP made by a compounding pharmacy. It works well. I have bad days, but the good ones are GOOD. And at 62 I may have the stirrings of a libido again.
    Women are not important in the New World. Madeleine Albright said that last night on the Craig Ferguson show.
    I wonder if this is some sort of conscious “plan” to get rid of a lot of us at once. I am not into conspiracies, but Lordy!… if men had this problem pigs would be sacrificed at an altar every minute of every day.
    Not one PEEP on national news, not one mention anywhere except STTM and a few very off the beaten path sites.
    My insurance will not pay for my meds (expensive) but any man can get a 3 month free supply of Viagra.
    I think it’s time for another Women’s Movement. We never ratified the ERA!
    Blessings on everyone of us here fighting for our lives and our QOL.
    Stand fast! Fire your TSH-only doctor.
    Synthroid is a toxin.

    Reply
  17. Louise

    Reading this today brings back a flood of memories and not always good. I am 41 years old and when I was 21 my mother had a massive cardiac arrest and spent the next 12 years in a coma. She was was 42! I look back on my childhood with new eyes; knowing all that I do about hypothyroidism and now my friend Adrenal Fatigue. My mother was not a very large woman but kept her weight in her stomach and butt area. She was always cold. Her fingers were always numb to the point that they were white/yellow. Her hair was very thin and she had almost no eyebrows. This is just the external stuff. My mother had a very poor temper. She did not have the patience for three girls. She smoked and she drank more than she should have–I firmly believe this was her form of self-medication. I am not condoning; simply understanding. She would nap in the afternoon. She had high blood pressure and cholesterol and took meds for that. I never recall the mention of her thyroid as a problem but looking back I am sure she had a problem.

    My sister, has classic bi-polar symptoms and another sister exhibits hypoT symptoms.

    I am still in amazement that our thyroid controls so much. So much so that it wreaks havoc in families. I am happy to have found help for my thyroid; even though I am still working on it. I do not want to leave my children in the same boat as my sisters and I.

    Reply
  18. Coralie

    There is a fabulous doctor in Australia who treats thyroid and adrenal fatigue – Dr Berkowski – her office is in Chatswood. She has thyroid problems herself, and is very kind and sympathetic.

    Also, I noticed a post by someone with Fibromyalgia. I have been on the Guaifenesin Protocol for 2 years now, and my TMJ has gone (suffered over 10 years) and my upper back, neck, shoulders are all about 80% improved pain wise! You MUST do the protocol properly and stay away from salicylates if you want it to work for you. Its crazy to think that the ONLY treatment that treats the CAUSE is poo pooed by so many.

    Coralie

    Reply
  19. jaime

    I am thankful to God for the computer and the internet, and thankful for you, Janie. I almost did not get a computer, either, in 2004 but bought one anyway, and just in the nick of time,because it was a year later when all my thyroid hell surfaced and i was being given the runaround by doctors.

    Reply
  20. TMC

    Jessica Williams, I’m very offended by your strange conspiracy theory. I am a man with quite bad low thyroid problem, and I have the same issues everyone else here has with convincing doctors to give proper treatment. Sometimes I feel like my body is disintegrating from the inside, and my doc keeps just adding on to the levothyroxine dosage. I’m not getting better, if not worse.

    Saying that reduction of Armour is some plot to get rid of women sounds (no offense) completely insane and paranoid. If this is what you seriously think, you might be having worsening hypothyroid symptoms and I urge you get rechecked.

    Reply
    • Rose

      I realize this post is old, but I feel compelled to reply. I don’t think Big Pharma is out to kill folks. I think Big Pharma’s goal is to keep us sick. The sicker we are, the more medicine we are apt to buy. Big Pharma has a hand in the curricula of most medical schools, teaching med students to prescribe, prescribe, prescribe. What is better than a drug that has such horrible side effects that you need even MORE drugs. It’s not a conspiracy theory either. Just look at the long list of side effects of virtually every prescription drug out there. Big Pharma makes it very clear that what they sell is dangerous. But, we – like sheep – listen to our doctors who are brainwashed by Big Pharma.

      Reply
  21. Rosanna

    I am a 47 yr. old woman who was diagnosed with hypothyroid when I was 31. I have been on Synthroid since. The last couple of years I have been having troouble swallowing. I am told I have silent acid reflux and my dysphasia is from radiation I had when I was 15. I am in denial only because it has been 32 years and no radiation side effects. I was a young trooper with all that and never had any bad side effects! no Dr. will admit it could be my meds. and everything else was checked. I feel like a rat in their lab because nothing is being done to correct this and I can’t eat. I am getting depressed-with good reason and I lost 15 pounds. If I stop the synthroid I will get a goiter and risk thyroid cancer. Going to endocrinologist this Tues. Can’t even afford his visits anymore with all the testing, medications for acid reflux (denial again) and different doctors I have gone to. What is this alternitive everyone is speaking about? I am telling him to take me off the synthroid, but What is going to not give me dysphasia? I am afraid I will die from this -soon. I choke all the time I CAN’T BELIEVE WHAT I AM READING. So glad u have all posted- Thank u. It has been a few years, I wish everyone well.

    Reply

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