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Levothyroxine dosage changes - what is considered too large of a dosage change?
My wife gradually lost all thyroid function after radiation treatment for cancer back in 1990. She received radiation therapy for her initial bout with uterine cancer.
After a year, cancer returned to her vaginal cuff and a radical 13 hour surgery called a pelvic exenteration was performed to remove her vagina, lymph nodes in her legs, bladder, ovaries, part of her large and small intestines, and some of her rectal muscles. As part of the surgery, an artifical bladder (florida pouch with stoma) was created along with an artifical vagina.
She has now been diagnosed as being in stage 4 kidney failure after years of being treated by antibiotics for constant UUT infections caused by having to re-use catheters (before insurance finally stepped up to the plate and paid for 6 fresh catheters/day).
Her thyroid condition is currently being treated by a local general practitioner that I'm beginning to question - that he knows what he is doing.
He had started her at 100 mcg and within a year had her up to 300 mcg per day (still couldn't lose weight even after eating < 1000 cal /day).
She was feeling terrible at the 300 mcg dosage - even after 6 weeks at that dosage. Symptoms were irritability, exhaustion, not being able to sleep more than 2-3 hours at a time, no appetite, jittery, and weak all over.
She ended up in the hospital a couple of months ago after one of her Upper Urinary Tract Infections (UUTI) went septic (caused by bacteria entering one or both of her twin external nephrology stints that go from her back into her kidneys and down into her internal urostomy pouch).
During her stay at the hospital, her internist commented that he was concerned at the high dosage of levothyroxine that she was on and consulted with the hospital staff. They immediately reduced her levothyroxine down to 200 mcg per day. My wife recovered from the septic shock, and went home. She was feeling good at the 200 mcg level.
She stayed at the 200 mcg level for several weeks until she went to see her general practitioner around 3 weeks ago. He immediately jumped her levothyroxine from 200 mcg to 400 mcg per day (one 300 mcg and one 100 mcg pill).
My wife has been absolutely miserable. She is back to not being able to stay awake - but unable to sleep more than 2-3 hours at a time. She is so drug-out that she cannot do even the simplest things around the house. She is extremely nauseous all the time and cannot eat which causes additional nausea from all of the pills she takes for her failing kidneys. She is dizzy at times, very jittery , depressed, and has all but given up because her quality of life is so poor.
Something doesn't seem right here... I had always heard that when someone is being treated for a thyroid condition, you never made large jumps in dosage (either up or down). I'd always been told that increases/decreases to thyroid medicines were made in fairly small steps with a stabilization period of 4-6 weeks per dosage change. I was led to believe that making too large a change all at once could be life-threatening by throwing the body into shock.
Going from 200 mcg to 400 mcg in one fell swoop doesn't seem like a small step to me. Am I being paranoid or am I right to feel concerned about what I feel is a too large a dosage change? I told her to call an endocrinologist or internalist ASAP. Would I be wrong in advising her to go back to the 200 mcg level until she can see a doctor or would I be exasperating the problem by having her make another large jump backwards to her previous dosage after being on the 400 mcg dosage for 3 weeks?
On top of everything - her kidneys are only operating at 30-40%, so she has problems voiding meds out of her system that have not been fully metabolized. We need to be careful that her meds do not start building up in her system - causing over-dosing. I'd imagine levothyroxine would work the same way.
Any thoughts?
After a year, cancer returned to her vaginal cuff and a radical 13 hour surgery called a pelvic exenteration was performed to remove her vagina, lymph nodes in her legs, bladder, ovaries, part of her large and small intestines, and some of her rectal muscles. As part of the surgery, an artifical bladder (florida pouch with stoma) was created along with an artifical vagina.
She has now been diagnosed as being in stage 4 kidney failure after years of being treated by antibiotics for constant UUT infections caused by having to re-use catheters (before insurance finally stepped up to the plate and paid for 6 fresh catheters/day).
Her thyroid condition is currently being treated by a local general practitioner that I'm beginning to question - that he knows what he is doing.
He had started her at 100 mcg and within a year had her up to 300 mcg per day (still couldn't lose weight even after eating < 1000 cal /day).
She was feeling terrible at the 300 mcg dosage - even after 6 weeks at that dosage. Symptoms were irritability, exhaustion, not being able to sleep more than 2-3 hours at a time, no appetite, jittery, and weak all over.
She ended up in the hospital a couple of months ago after one of her Upper Urinary Tract Infections (UUTI) went septic (caused by bacteria entering one or both of her twin external nephrology stints that go from her back into her kidneys and down into her internal urostomy pouch).
During her stay at the hospital, her internist commented that he was concerned at the high dosage of levothyroxine that she was on and consulted with the hospital staff. They immediately reduced her levothyroxine down to 200 mcg per day. My wife recovered from the septic shock, and went home. She was feeling good at the 200 mcg level.
She stayed at the 200 mcg level for several weeks until she went to see her general practitioner around 3 weeks ago. He immediately jumped her levothyroxine from 200 mcg to 400 mcg per day (one 300 mcg and one 100 mcg pill).
My wife has been absolutely miserable. She is back to not being able to stay awake - but unable to sleep more than 2-3 hours at a time. She is so drug-out that she cannot do even the simplest things around the house. She is extremely nauseous all the time and cannot eat which causes additional nausea from all of the pills she takes for her failing kidneys. She is dizzy at times, very jittery , depressed, and has all but given up because her quality of life is so poor.
Something doesn't seem right here... I had always heard that when someone is being treated for a thyroid condition, you never made large jumps in dosage (either up or down). I'd always been told that increases/decreases to thyroid medicines were made in fairly small steps with a stabilization period of 4-6 weeks per dosage change. I was led to believe that making too large a change all at once could be life-threatening by throwing the body into shock.
Going from 200 mcg to 400 mcg in one fell swoop doesn't seem like a small step to me. Am I being paranoid or am I right to feel concerned about what I feel is a too large a dosage change? I told her to call an endocrinologist or internalist ASAP. Would I be wrong in advising her to go back to the 200 mcg level until she can see a doctor or would I be exasperating the problem by having her make another large jump backwards to her previous dosage after being on the 400 mcg dosage for 3 weeks?
On top of everything - her kidneys are only operating at 30-40%, so she has problems voiding meds out of her system that have not been fully metabolized. We need to be careful that her meds do not start building up in her system - causing over-dosing. I'd imagine levothyroxine would work the same way.
Any thoughts?
COMMUNITY LEADER
This is a very old post and DMADRARAS is no longer active on the forum.
I would like to tell you, though, that the "side effects" you posted for levo, are not really side effects of the medication....... those are symptoms of being over medicated/hyper. If you have those symptoms, you are on too much medication!!
TSH is a pituitary hormone, which varies greatly, even intraday; it should never be used, alone, to diagnose or determine a treatment strategy.
You need to get Free T3 and Free T4 tested; those are the actual thyroid hormones and will give a much better picture of what's going on than TSH will.
If you've ever been tested for Free T3 and Free T4, please post your most current levels, with reference ranges, which vary lab to lab and must come from your own report.
I would like to tell you, though, that the "side effects" you posted for levo, are not really side effects of the medication....... those are symptoms of being over medicated/hyper. If you have those symptoms, you are on too much medication!!
TSH is a pituitary hormone, which varies greatly, even intraday; it should never be used, alone, to diagnose or determine a treatment strategy.
You need to get Free T3 and Free T4 tested; those are the actual thyroid hormones and will give a much better picture of what's going on than TSH will.
If you've ever been tested for Free T3 and Free T4, please post your most current levels, with reference ranges, which vary lab to lab and must come from your own report.
wow 400 MCG is alot of levothyroxine. i have started taking medications for my thyroid and am on 176 MCG and i have been on it for a year now. They started me out at 50 MCG and have slowly increased my dose based on my TSH level. If you increase your medication to fast you can cause more problems than not being on medication. The doctor should check her TSH level every 6 weeks until lab values are within normal limits. I see an Endocrinology to manage my thyroid disease.
This is the side effects of too much levothyroxine : Nervousness and irritability,Palpitations and tachycardia,Which is an irregular heart beat and a extremely fast heartbeat,Heat intolerance or increased sweating,Tremor
Weight loss ,Increase in appetite,Frequent bowel movements or diarrhea,Lower leg swelling,Sudden paralysis
Shortness of breath with exertion,Decreased menstrual flow
Impaired fertility,Sleep disturbances (including insomnia)
Changes in vision, or double vision,, Exophthalmos, or forward protrusion of the eyeball, Fatigue and muscle weakness, Thyroid enlargement
Hope this helps.
This is the side effects of too much levothyroxine : Nervousness and irritability,Palpitations and tachycardia,Which is an irregular heart beat and a extremely fast heartbeat,Heat intolerance or increased sweating,Tremor
Weight loss ,Increase in appetite,Frequent bowel movements or diarrhea,Lower leg swelling,Sudden paralysis
Shortness of breath with exertion,Decreased menstrual flow
Impaired fertility,Sleep disturbances (including insomnia)
Changes in vision, or double vision,, Exophthalmos, or forward protrusion of the eyeball, Fatigue and muscle weakness, Thyroid enlargement
Hope this helps.
Thank you for responding to my post about my wife's thyroid level changes...
She said she will get a copy of her last couple of thyroid lab results and I'll post them as soon as we get them. Yes, it is very hard on both of us - but it is her that I worry about. I would do anything in the world to help her...
She said she will get a copy of her last couple of thyroid lab results and I'll post them as soon as we get them. Yes, it is very hard on both of us - but it is her that I worry about. I would do anything in the world to help her...
COMMUNITY LEADER
I, too, am sorry to hear of your wife's ordeal; it must be very hard on you both. As gimel said, please post your wife's latest thyroid lab results, along with the reference ranges, which vary from lab to lab, so must come from her own report. If you don't have a copy of the lab report, your doctor is obligated by law to provide a copy.
It's generally recommended to make small changes and let the patient's body adjust to them, then retest before making further changes. I'd be interesting in knowing what your wife's GP was basing his decision on, to double her medication, all at one time.
It's generally recommended to make small changes and let the patient's body adjust to them, then retest before making further changes. I'd be interesting in knowing what your wife's GP was basing his decision on, to double her medication, all at one time.
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