Comments on: Suffering on Synthroid: imagine how horrific it was before the internet http://www.stopthethyroidmadness.com/2009/12/01/suffering-on-synthroid/ Thyroid Treatment Scandal and Hypothyroid Mistreatment Thu, 02 Sep 2010 05:43:45 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: jaime http://www.stopthethyroidmadness.com/2009/12/01/suffering-on-synthroid/comment-page-1/#comment-51173 jaime Mon, 05 Apr 2010 02:22:27 +0000 http://www.stopthethyroidmadness.com/?p=4079#comment-51173 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. 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.

]]> By: Coralie http://www.stopthethyroidmadness.com/2009/12/01/suffering-on-synthroid/comment-page-1/#comment-51163 Coralie Sun, 04 Apr 2010 23:29:28 +0000 http://www.stopthethyroidmadness.com/?p=4079#comment-51163 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 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

]]> By: Louise http://www.stopthethyroidmadness.com/2009/12/01/suffering-on-synthroid/comment-page-1/#comment-47985 Louise Sat, 23 Jan 2010 21:39:09 +0000 http://www.stopthethyroidmadness.com/?p=4079#comment-47985 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. 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.

]]> By: Jessica Williams http://www.stopthethyroidmadness.com/2009/12/01/suffering-on-synthroid/comment-page-1/#comment-46829 Jessica Williams Wed, 30 Dec 2009 07:19:03 +0000 http://www.stopthethyroidmadness.com/?p=4079#comment-46829 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. 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.

]]> By: linda jennings http://www.stopthethyroidmadness.com/2009/12/01/suffering-on-synthroid/comment-page-1/#comment-46809 linda jennings Tue, 29 Dec 2009 23:37:23 +0000 http://www.stopthethyroidmadness.com/?p=4079#comment-46809 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 ) 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 )

]]> By: Samie http://www.stopthethyroidmadness.com/2009/12/01/suffering-on-synthroid/comment-page-1/#comment-46575 Samie Sun, 20 Dec 2009 21:59:44 +0000 http://www.stopthethyroidmadness.com/?p=4079#comment-46575 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) 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)

]]> By: Patricia http://www.stopthethyroidmadness.com/2009/12/01/suffering-on-synthroid/comment-page-1/#comment-46509 Patricia Fri, 18 Dec 2009 19:28:13 +0000 http://www.stopthethyroidmadness.com/?p=4079#comment-46509 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. 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.

]]> By: chris http://www.stopthethyroidmadness.com/2009/12/01/suffering-on-synthroid/comment-page-1/#comment-46447 chris Thu, 17 Dec 2009 06:16:03 +0000 http://www.stopthethyroidmadness.com/?p=4079#comment-46447 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: www.helpingpatients.org ) 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 )

]]> By: El http://www.stopthethyroidmadness.com/2009/12/01/suffering-on-synthroid/comment-page-1/#comment-46286 El Mon, 14 Dec 2009 16:16:27 +0000 http://www.stopthethyroidmadness.com/?p=4079#comment-46286 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. 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.

]]> By: Andrea http://www.stopthethyroidmadness.com/2009/12/01/suffering-on-synthroid/comment-page-1/#comment-46115 Andrea Thu, 10 Dec 2009 07:04:24 +0000 http://www.stopthethyroidmadness.com/?p=4079#comment-46115 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. 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.

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