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Allergic to all Hashimoto Meds, help!!
I was diagnosed with borderline thyroid disease in 2002. My internist prescribed Armour lowest dose, I take a fraction to see if I can tolerate it, I cannot tolerate SSRI's or cold medicine.I felt great for a few hours and then didn't sleep, couldn't relax and discontinued as symptoms were barely perceptable.
2007: My TSH was up at .3 (forgive if I misplace the decimals), and then one fluke .8, I had a goiter and was told I had Hashimoto's Thyroiditis. The internist said I had a goiter, tried me on 25 mg. Synthroid, and smallest doses of Levithroid & Armour Thyroid meds. I couldn't intolerant the meds. He sent me to an endo to do an ultrasound.
The endo with 2 years said I had a goiter with enlarged nodules and inflammation on one side of my thyroid, sent me for an ultrasound. Results: no goiter, no enlarged nodules, no inflammation. She then said my thryoid gland had been ravaged by the disease with ragged edges & irregularites, said I was prediabetic & gave me Synthroid 88 mg.
My internist and a second well respected endo were both up in arms and said no way was I prediabetic by their tests. The second endo was because I couldn't tolerate synthroid, hoped he'd try me on other meds. He tried lowest doses of Levoxyl and Armour again. I couldn't tolerate either. He became exasperated & said something else was going on. He tested my adrenals they were fine & he said I had "a perfectly formed thyroid gland."
My first internist said my thyroid was huge but it would shrink if not under pressure. It's big right now, and I have a gently rising, visible swelling mound just above my clavicle bones about where you would insert a trach. Also my thyroid is now huge again with sharp protrusions not visible.
In Sept., the endo said my T-3 and T-4 ranges are just a little outside of normal & shouldn't cause such exhaustion, depression, irritability, (yet the TSH is raised somewhat indicating antibodies attacking my thyroid) but taking one fourth of the lowest doses of synthroid, even every other day, causes me not to sleep (so I double up on Valium for a tense 8 hours sleep), and am very depressed and irritable by the third day. I am not exaggerating.
I didn't go to seek help until I was laying so listlessly on a recliner sleeping for hours, and I'd wake up, 4 hours passed to find my arms would be dangling off of it like a rag doll, I would feel passed out rather than like I had napped. I was putting in 10 hours a day + 2 hours commute time and would be worn but happy by the time I got home 11-12 hours later.
When the symptoms of 2007 set in, I was too tired to get a drink of water. After so long I went on the long road to trying the lowest doses of the following meds: Synthroid 25 mg., Levithroid, Levoxyl, Armour Thyroid (which was most tolerable at first, but I hit the barrier when I couldn't sleep and started experiencing heart palpitations and racing pulse, so regretably I went off it and the 2nd endo chastised me for trying it).
Naturally, all the doctors say is, 'well everyone is able to take synthroid, we've never heard of your case.' I've lived an energetic life and hate to waste my time in doctor's offices pretending to have symptoms, or sitting in a chair tight with tension on meds or exhausted and inert but sad, despairing yet relaxed off meds.
My most significant background before my symptoms began was that mny husband prior to this, had a catastrophic illness, was in ICU for 4 months, and is at home not expected to live, on oxygen 24/7, they've "done all they can." We've been in this holding pattern since he came home May, 2006. Slowly he gets weaker, and I have to check his breathing a few times a night. I am aware that a certain amount of mental distress, anguish, and shock have been suppressed since he has been home that our lives have come to a halt from two hard workers to two convalescent patients, he is 62 and I am 51.
Reading I might have worn my adrenals out with all the extreme fear and terror I felt watching my husband's unexpected admittance into ICU for congestive heart failure and subsequent stroke, coma, valve replacement, infected pacemaker, double pneumonia, toes amputated from gangrene due to poor oxygen circulation, and the unexpected determination of a terminal lung disease called pulmonary fibrosis, wherein the doctors said he would not survive the hospital, and since he did, that a small cold or flu and pneumonia would kill him due to his heart which is at 25% capacity and lungs about 35% might have plunged by immune system into this strange condition.
But the TSH is elevated and the symptoms and goiter are all there. The Endos checked my adrenals by needle and by spit test. I was fine. They wonder if something else is going on but I have no sore throat or fever to rule out many of the diseases. So day after day I sit in my chair full of anxiety and immobilized with fear, possibly over my husband and probably due to the devastating Hashimoto's Disease present in all of the female members of my family who were diagnosed early on and went on the meds in their 30s and had no problem.
So I think it is Hashimoto's. Because I was in full swing taking care of him when he got home. One aunt had throat cancer, voicebox removed, one had thyroid and breast cancer and had her thyroid and breast removed. My mother died of a sudden heart attack in her hallway at age 69.
Right now I have a gradual mound of swelling where my trachea is or it might be the bottom of my thyroid. It has been 7 months that I have been told and cannot take thyroid meds, and am getting worried. I have no energy to get to another doctor, i.e. rheumatologist or allergy/immunology doctor. Frankly, drinking beer covers up the symptoms and covers up the depression until I get good and sick of that and switch planes on the titanic, at which point, an overwhelming sense of fatigue and depression returns as I progress back into sobriety.
And, by the way, it was the Hashi meds that drove me to drink beer to tolerate the agitation, anxiety, insomnia and resulting spaced out feeling, and body tension.
I am on premarin (lowest dose) for 13 years due to a complete hysterectomy, no kids, I have been on 50 mg. of trazodone for 13 years, and am on Valium since my husband is dying.
I am now at 220 lbs., 5'4" with cholesterol and triglycerides way off the charts of high. My endo says I am a "time bomb" and have the same rate of survival as a person with breast cancer.
But how, out of high anxiety, racing heart from thyroid treatment to relief from it with complete inertia both bringing various forms of despair and anxiety, can I be focused enough for a "food plan" or "exercise". I am dizzy and thirsty, weak and inert. Would eliminating premarin (a female hormone contrary to thyroid hormone (?)) or desyrel (trazodone) help me tolerate the Synthroid? Can you suggest a med I have not mentioned? Very grateful for your time, Mandy.
2007: My TSH was up at .3 (forgive if I misplace the decimals), and then one fluke .8, I had a goiter and was told I had Hashimoto's Thyroiditis. The internist said I had a goiter, tried me on 25 mg. Synthroid, and smallest doses of Levithroid & Armour Thyroid meds. I couldn't intolerant the meds. He sent me to an endo to do an ultrasound.
The endo with 2 years said I had a goiter with enlarged nodules and inflammation on one side of my thyroid, sent me for an ultrasound. Results: no goiter, no enlarged nodules, no inflammation. She then said my thryoid gland had been ravaged by the disease with ragged edges & irregularites, said I was prediabetic & gave me Synthroid 88 mg.
My internist and a second well respected endo were both up in arms and said no way was I prediabetic by their tests. The second endo was because I couldn't tolerate synthroid, hoped he'd try me on other meds. He tried lowest doses of Levoxyl and Armour again. I couldn't tolerate either. He became exasperated & said something else was going on. He tested my adrenals they were fine & he said I had "a perfectly formed thyroid gland."
My first internist said my thyroid was huge but it would shrink if not under pressure. It's big right now, and I have a gently rising, visible swelling mound just above my clavicle bones about where you would insert a trach. Also my thyroid is now huge again with sharp protrusions not visible.
In Sept., the endo said my T-3 and T-4 ranges are just a little outside of normal & shouldn't cause such exhaustion, depression, irritability, (yet the TSH is raised somewhat indicating antibodies attacking my thyroid) but taking one fourth of the lowest doses of synthroid, even every other day, causes me not to sleep (so I double up on Valium for a tense 8 hours sleep), and am very depressed and irritable by the third day. I am not exaggerating.
I didn't go to seek help until I was laying so listlessly on a recliner sleeping for hours, and I'd wake up, 4 hours passed to find my arms would be dangling off of it like a rag doll, I would feel passed out rather than like I had napped. I was putting in 10 hours a day + 2 hours commute time and would be worn but happy by the time I got home 11-12 hours later.
When the symptoms of 2007 set in, I was too tired to get a drink of water. After so long I went on the long road to trying the lowest doses of the following meds: Synthroid 25 mg., Levithroid, Levoxyl, Armour Thyroid (which was most tolerable at first, but I hit the barrier when I couldn't sleep and started experiencing heart palpitations and racing pulse, so regretably I went off it and the 2nd endo chastised me for trying it).
Naturally, all the doctors say is, 'well everyone is able to take synthroid, we've never heard of your case.' I've lived an energetic life and hate to waste my time in doctor's offices pretending to have symptoms, or sitting in a chair tight with tension on meds or exhausted and inert but sad, despairing yet relaxed off meds.
My most significant background before my symptoms began was that mny husband prior to this, had a catastrophic illness, was in ICU for 4 months, and is at home not expected to live, on oxygen 24/7, they've "done all they can." We've been in this holding pattern since he came home May, 2006. Slowly he gets weaker, and I have to check his breathing a few times a night. I am aware that a certain amount of mental distress, anguish, and shock have been suppressed since he has been home that our lives have come to a halt from two hard workers to two convalescent patients, he is 62 and I am 51.
Reading I might have worn my adrenals out with all the extreme fear and terror I felt watching my husband's unexpected admittance into ICU for congestive heart failure and subsequent stroke, coma, valve replacement, infected pacemaker, double pneumonia, toes amputated from gangrene due to poor oxygen circulation, and the unexpected determination of a terminal lung disease called pulmonary fibrosis, wherein the doctors said he would not survive the hospital, and since he did, that a small cold or flu and pneumonia would kill him due to his heart which is at 25% capacity and lungs about 35% might have plunged by immune system into this strange condition.
But the TSH is elevated and the symptoms and goiter are all there. The Endos checked my adrenals by needle and by spit test. I was fine. They wonder if something else is going on but I have no sore throat or fever to rule out many of the diseases. So day after day I sit in my chair full of anxiety and immobilized with fear, possibly over my husband and probably due to the devastating Hashimoto's Disease present in all of the female members of my family who were diagnosed early on and went on the meds in their 30s and had no problem.
So I think it is Hashimoto's. Because I was in full swing taking care of him when he got home. One aunt had throat cancer, voicebox removed, one had thyroid and breast cancer and had her thyroid and breast removed. My mother died of a sudden heart attack in her hallway at age 69.
Right now I have a gradual mound of swelling where my trachea is or it might be the bottom of my thyroid. It has been 7 months that I have been told and cannot take thyroid meds, and am getting worried. I have no energy to get to another doctor, i.e. rheumatologist or allergy/immunology doctor. Frankly, drinking beer covers up the symptoms and covers up the depression until I get good and sick of that and switch planes on the titanic, at which point, an overwhelming sense of fatigue and depression returns as I progress back into sobriety.
And, by the way, it was the Hashi meds that drove me to drink beer to tolerate the agitation, anxiety, insomnia and resulting spaced out feeling, and body tension.
I am on premarin (lowest dose) for 13 years due to a complete hysterectomy, no kids, I have been on 50 mg. of trazodone for 13 years, and am on Valium since my husband is dying.
I am now at 220 lbs., 5'4" with cholesterol and triglycerides way off the charts of high. My endo says I am a "time bomb" and have the same rate of survival as a person with breast cancer.
But how, out of high anxiety, racing heart from thyroid treatment to relief from it with complete inertia both bringing various forms of despair and anxiety, can I be focused enough for a "food plan" or "exercise". I am dizzy and thirsty, weak and inert. Would eliminating premarin (a female hormone contrary to thyroid hormone (?)) or desyrel (trazodone) help me tolerate the Synthroid? Can you suggest a med I have not mentioned? Very grateful for your time, Mandy.
COMMUNITY LEADER
You've attached to a very old thread - this one is from 2007 and none of the previous posters are active on the forum any longer.
The active ingredient (levothyroxine) in thyroid medications is identical to that which your body would make if it could, and allergy it is virtually unheard of.
Rarely, a person has an allergic reaction to the inactive ingredients (fillers, binders or dyes) in the pills. In this case, there's a medication called Tirosint that's a gelcap and does not contain the fillers, binders or dyes contained in other levothyroxine pills.
I'm assuming the surgery you're referring to is having your thyroid removed? If you have your thyroid removed you have not choice but take some type of thyroid replacement medication, since you can't live very long without thyroid hormones. They control your heart rate, body temperature, metabolism and other body functions.
I don't know what 3 stages of Hashimoto's you're referring to.
The active ingredient (levothyroxine) in thyroid medications is identical to that which your body would make if it could, and allergy it is virtually unheard of.
Rarely, a person has an allergic reaction to the inactive ingredients (fillers, binders or dyes) in the pills. In this case, there's a medication called Tirosint that's a gelcap and does not contain the fillers, binders or dyes contained in other levothyroxine pills.
I'm assuming the surgery you're referring to is having your thyroid removed? If you have your thyroid removed you have not choice but take some type of thyroid replacement medication, since you can't live very long without thyroid hormones. They control your heart rate, body temperature, metabolism and other body functions.
I don't know what 3 stages of Hashimoto's you're referring to.
i'm in the same predicament I've been suffering from 2009 and have seen so many thyroid doctor's who don't know much of anything going to see another 1 2 days before Christmas have had ultra sounds and they say there small but they keep getting inflamed i'm 48 taking 600 ibuprofen every 4 hours as needed and eat pepitas for inflammation in the body it does help it's the raw form of pumpkin's seeds. I pray that God will guide this new doctor to let me get the surgery and I found out there is 3 stages to the hashimoto's thyroiditis . I can't take any of the medications i'm allergic to all of them too.
Yes, also give the med some time. It takes time to work and your body will likely adjust to it. A real allergy risks anaphylaxis and is systemic, it's not about insomnia. There are other brands besides Synthroid. It's one thing if the doc hears the symptoms and takes you off, but if you automatically just take yourself off, without the doctor concurring, that's another.
I am sorry to here about your husband. My father died of Pulmonary Fibrosis. You have my heartfelt sympathy.
You should discuss with your Endo the idea of dropping one of the other meds and trying Synthroid again, or some other hormone replacement. It may be the right answer.
You should discuss with your Endo the idea of dropping one of the other meds and trying Synthroid again, or some other hormone replacement. It may be the right answer.
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