Aa
Need Thyroid help
I have switched from hypo to hyper. They have not done the tsh levels for 3 months so I don't know how long I've been this way. I do know my pulse has been high for a few weeks over 100, but today its 120.
My TSH is 0.007 and the Free T4 is 2.64, both way out of range. The problem is I am taking medication for hypo and a high dosage of synthroid 150mcg. Over medicating now and I don't want to end up in the hospital like lala did over this. I have called the doctors office but no return call yet. Probably won't, as this is the holiday weekend.
I did not take any synthroid today, and not sure if I should take any tomorrow or Sunday. I am hoping someone will read this who understands the from hypo to hyper and offer advice, or some understanding of the situation.
I have been off tx since Sunday if that's of any importance.
My TSH is 0.007 and the Free T4 is 2.64, both way out of range. The problem is I am taking medication for hypo and a high dosage of synthroid 150mcg. Over medicating now and I don't want to end up in the hospital like lala did over this. I have called the doctors office but no return call yet. Probably won't, as this is the holiday weekend.
I did not take any synthroid today, and not sure if I should take any tomorrow or Sunday. I am hoping someone will read this who understands the from hypo to hyper and offer advice, or some understanding of the situation.
I have been off tx since Sunday if that's of any importance.
seems to be a lot of variables in how long folks think it takes for dosages to be effective.
I was told 6 wks. reason being, the pendulum swings, even small dose changes make huge differences, the level at 3 wks may be perfect, but it can still go further the other way after that. Takes time to dial in if a dose is right.
I suppose whether you got info from an endo or GP, older or younger would effect their answer here.
Also, take the meds same time of day, on empty stomach. I take mine in the wee AM hrs. If you forget a dose take it anyway when you do remember, full tummy or not, but forgetting or having food with or too soon can leave you uncertain even a 6 wks as to whether your dose is correct so try to be vigilant. I used Epill..rings me same time each morn, or you can set the pill out where you will see it when you awaken, wake drowsily, go pee, come bak to bed, grab my pill, go bak to ZZZ's...later, when I really wake up, if pill is gone I know I took it...whatever works for you.
I wouldn't think the INF/Riba would make any difference in one week off.
Riba stimulates, but takes 6 months to clear, less INF itself on day 8 alone shouldn't raise your pulse, but I wouldn't rule our Riba stuff...depends on how you tolerated it. I had a lot of probs with it, and could feel when EVERY dose kicked in, but not everyone feels that.
What was your pulse normally? Have you been more active after long activity? That alone could raise it. Caffiene can raise it. Getting dehydrated can effect it. I stopped drinking so much water after tx, and dehydration effects BP and pulse.
.
My other question is did you go off of any other meds? Going off benzos, anti-anxiety or anti-depressant meds can also raise your pulse.
Also you can expect some weird body stuff from the Riba alone. Since I tapered my INF slowly down over 2 months I know that abruptly stopping the Riba gave me some very strange symptoms.(the taper meant it wasn't the INF and symptoms were abrupt (2 days off Riba) and my INF was at 3/4 dose then)
It was Mostly joint stuff...I went back on half dose for 2 wks, and then stopped again, and this time didn't get the all the weird stuff. Another member also took this approach.
They looked at me funny when I said I had such instant joint stuff coming off the Riba...but why would I make that up? Honestly chemo should be tried by providers, rolleyes.
my endo wanted me to stay between .0 and ,1 TSH, says it's better for me and that 2 or 3, the old "normal" is NOT good.
a lot of the stuff I read years ago said you should have full panel thyroid test...but that just confirms that the TSH was an accurate reading, so they are not essential as some lay people believe. For my money, were I you, I'd rather ask for an antibody test to rule out hasimotos or grave's disease.
INF can push anyone into autoimmune stuff, and this is something I've dealt with for years...and something you really do want to head off at the pass is any autoimmune stuff.
Anyone on chemo can react with autoimmune stuff. When you cease INF the lower level can cause inflammatory stuff as well. INF itself can set off Rhumatoid arthritis, one of the worst, so no surprise if it sets off Hashi or graves. Basically INF therapy is an overstimulation of the immune system by injection of more of an immune system fighter compound than is normal.
Also if you are diebetic or hypothyroid you know to watch for symptoms of congestive heart failure I hope. If you've only had thyroid issues during tx, and no Type I or type II diebetic stuff then not to worry, but if so, google congestive heart failure and learn to watch for signs of water in the heart sac. Do not let a doc be dismissive of your concerns if you have those symptoms as that needs early attention to avert.
The good news is the systems of most folks will adjust to the greater, and later the lesser amounts of both riba and INF...but often the transitions on and off of all this stuff can be a bit rocky.
Hope you feel better soon, and let us know how it turns out. OK?
mb
I was told 6 wks. reason being, the pendulum swings, even small dose changes make huge differences, the level at 3 wks may be perfect, but it can still go further the other way after that. Takes time to dial in if a dose is right.
I suppose whether you got info from an endo or GP, older or younger would effect their answer here.
Also, take the meds same time of day, on empty stomach. I take mine in the wee AM hrs. If you forget a dose take it anyway when you do remember, full tummy or not, but forgetting or having food with or too soon can leave you uncertain even a 6 wks as to whether your dose is correct so try to be vigilant. I used Epill..rings me same time each morn, or you can set the pill out where you will see it when you awaken, wake drowsily, go pee, come bak to bed, grab my pill, go bak to ZZZ's...later, when I really wake up, if pill is gone I know I took it...whatever works for you.
I wouldn't think the INF/Riba would make any difference in one week off.
Riba stimulates, but takes 6 months to clear, less INF itself on day 8 alone shouldn't raise your pulse, but I wouldn't rule our Riba stuff...depends on how you tolerated it. I had a lot of probs with it, and could feel when EVERY dose kicked in, but not everyone feels that.
What was your pulse normally? Have you been more active after long activity? That alone could raise it. Caffiene can raise it. Getting dehydrated can effect it. I stopped drinking so much water after tx, and dehydration effects BP and pulse.
.
My other question is did you go off of any other meds? Going off benzos, anti-anxiety or anti-depressant meds can also raise your pulse.
Also you can expect some weird body stuff from the Riba alone. Since I tapered my INF slowly down over 2 months I know that abruptly stopping the Riba gave me some very strange symptoms.(the taper meant it wasn't the INF and symptoms were abrupt (2 days off Riba) and my INF was at 3/4 dose then)
It was Mostly joint stuff...I went back on half dose for 2 wks, and then stopped again, and this time didn't get the all the weird stuff. Another member also took this approach.
They looked at me funny when I said I had such instant joint stuff coming off the Riba...but why would I make that up? Honestly chemo should be tried by providers, rolleyes.
my endo wanted me to stay between .0 and ,1 TSH, says it's better for me and that 2 or 3, the old "normal" is NOT good.
a lot of the stuff I read years ago said you should have full panel thyroid test...but that just confirms that the TSH was an accurate reading, so they are not essential as some lay people believe. For my money, were I you, I'd rather ask for an antibody test to rule out hasimotos or grave's disease.
INF can push anyone into autoimmune stuff, and this is something I've dealt with for years...and something you really do want to head off at the pass is any autoimmune stuff.
Anyone on chemo can react with autoimmune stuff. When you cease INF the lower level can cause inflammatory stuff as well. INF itself can set off Rhumatoid arthritis, one of the worst, so no surprise if it sets off Hashi or graves. Basically INF therapy is an overstimulation of the immune system by injection of more of an immune system fighter compound than is normal.
Also if you are diebetic or hypothyroid you know to watch for symptoms of congestive heart failure I hope. If you've only had thyroid issues during tx, and no Type I or type II diebetic stuff then not to worry, but if so, google congestive heart failure and learn to watch for signs of water in the heart sac. Do not let a doc be dismissive of your concerns if you have those symptoms as that needs early attention to avert.
The good news is the systems of most folks will adjust to the greater, and later the lesser amounts of both riba and INF...but often the transitions on and off of all this stuff can be a bit rocky.
Hope you feel better soon, and let us know how it turns out. OK?
mb
Some things I've learned:
Synthroid has a long half life. Dose changes might take close to a week to see even partial effect. It's also important to be reasonably consistent with your morning food patterns, to keep the absorbed dosing consistent.
Synthroid has a long half life. Dose changes might take close to a week to see even partial effect. It's also important to be reasonably consistent with your morning food patterns, to keep the absorbed dosing consistent.
Tippy, you don't want to end up like me. most people monitor TSH every 4 months, but during a switch or change, it is important that you get TSH done as often as possible, weekly. be careful with the pulse, are you on an beta-blockers? i was on 20mg to slow the pulse down a little. also, if you are anemic, pulse rises, so get cbc checked.
my endocrinologist said that if you were predisposed to have Grave's disease, then TSH will stay low.
my endocrinologist said that if you were predisposed to have Grave's disease, then TSH will stay low.
I have always been hypo and was wondering if the hyper will switched back to hypo when the interferon is out of my system. Is that how is usually works?
My PCP caught the thyroid thing, the hep team mentioned it once or twice but did not follow up. The PCP is very thorough, and is vigilant no matter what specialist I'm seeing. His take on that subject is "specialists are fine, but sometimes the 'ist' is silent!"
It takes a couple of weeks for the change in meds to become effective. I went through a couple of dose changes before we got it right, but now it seems to be stable.
Good luck with that.
It takes a couple of weeks for the change in meds to become effective. I went through a couple of dose changes before we got it right, but now it seems to be stable.
Good luck with that.
Well that is a relief! Once you get the rapid heart rate you start to freak out and that can't help but make it go faster and it's like a never ending circle! ;)
I guess three weeks is fine right cause they have to give time to the decrease to set in but it would seem to me that they'd better check you again in another few weeks after that, seriously I don't see what the problem is (trial or not trial) because it's just a blood test and doesn't affect any of the meds or anything to do with tx drugs - it's a serious thing and they should HAVE to keep on top of it just because they are doctors right?
Any chance you can just go to an endo doc on your own? I mean really it has nothing to do with the trial ;) I would try and get to the endo - maybe it's going to be time for a new nuclear imaging scan too now that you've flip flopped the backwards way? Gosh docturs (nurses) are so hard to deal with when they think they know everything aren't they?
I guess three weeks is fine right cause they have to give time to the decrease to set in but it would seem to me that they'd better check you again in another few weeks after that, seriously I don't see what the problem is (trial or not trial) because it's just a blood test and doesn't affect any of the meds or anything to do with tx drugs - it's a serious thing and they should HAVE to keep on top of it just because they are doctors right?
Any chance you can just go to an endo doc on your own? I mean really it has nothing to do with the trial ;) I would try and get to the endo - maybe it's going to be time for a new nuclear imaging scan too now that you've flip flopped the backwards way? Gosh docturs (nurses) are so hard to deal with when they think they know everything aren't they?
The trial won't check my tsh level again until July 29th. I started the lower dosage July 4th. Does that seem about right to have it checked again? I was thinking I should have it done in 2 weeks but that may be a waste.
Yes I know they should have checked my thyroid monthly, like they told me they would. They did check it the first three months. This is one of the things I would argue with the idiot nurse about when I caught her in lies. I knew I should have checked it on my own about 6 weeks ago. I didn't follow my gut feeling. Oh well it will all work out eventually.
By the way I am feeling great now and things are looking up. No more rapid heart rate.
Yes I know they should have checked my thyroid monthly, like they told me they would. They did check it the first three months. This is one of the things I would argue with the idiot nurse about when I caught her in lies. I knew I should have checked it on my own about 6 weeks ago. I didn't follow my gut feeling. Oh well it will all work out eventually.
By the way I am feeling great now and things are looking up. No more rapid heart rate.
Wow Tip - they had you on an awful lot of syntrhoid didn't they? you must have been very hypo (but you had it for a long time). When I went hyper to hypo they started me on .75mcg then put me on .88 and right now I think my TSH is about 1 somewhere and it has been consistently. You have been taking double that all this time...that's gotta be a lot!
I am SURE if you decrease the dosage it's going to level right out. Since you are going up and down (or down and up) they are going to have to monitor you more closely for a while.
While hyper is worse than hypo I can tell you that my TSH was 0.01 when I was diagnosed and I was fine - I don't know about going from hypo to hyper but I mean I had no 'real' complications (you know what i mean).
You are doing the right thing keep on monitoring it and adjusting it. The interferon really does cause a hassle with the thyoid especially I guess if you've already had the problem it makes sense it would go haywire. Weren't they looking for this to happen - I would think they would monitor you every month especially since you started out with it. Three months is too long after all it's just one more vial of blood at the blood draw!
I am SURE if you decrease the dosage it's going to level right out. Since you are going up and down (or down and up) they are going to have to monitor you more closely for a while.
While hyper is worse than hypo I can tell you that my TSH was 0.01 when I was diagnosed and I was fine - I don't know about going from hypo to hyper but I mean I had no 'real' complications (you know what i mean).
You are doing the right thing keep on monitoring it and adjusting it. The interferon really does cause a hassle with the thyoid especially I guess if you've already had the problem it makes sense it would go haywire. Weren't they looking for this to happen - I would think they would monitor you every month especially since you started out with it. Three months is too long after all it's just one more vial of blood at the blood draw!
sorry you are going through this. i can't offer much in way of help but hope you feel better soon. i know nygirl went through some problems with thyroid going from hypo to hyper or the other way around. i'm sure she will comment on this and give you some good first hand advice. wishing you the best.
I would say to monitor your pulse and B/P and go to ER if it does not improve within a couple of days with the lower dose. Good luck girl and congrats on finishing tx. I'll say a prayer for ya.
To: meakea
I was aware it could happen. Thank God I kept on top of my blood work because when I called she never told me it was out of range. I had her fax the blood work to me and saw it then. Had I not of done that I could have ended up in the hospital like lalapelle. I just got back with my loser dose medicine of 137mcg. Hope it does the trick. Pulse is down to 105 now.
I was aware it could happen. Thank God I kept on top of my blood work because when I called she never told me it was out of range. I had her fax the blood work to me and saw it then. Had I not of done that I could have ended up in the hospital like lalapelle. I just got back with my loser dose medicine of 137mcg. Hope it does the trick. Pulse is down to 105 now.
I hope it levels out for you very soon Tippy! I'm sorry you are having to deal with this especially now that your TX is over. My best to you.
To: meakea
its 150mcg. I don't think its the anxiety causing the high pulse because I just find out about this yesterday and its been high for a few weeks now, but especially high today, 120. I will keep an eye on it as the blood is high also and that's not normal for me.
To: FloridaMouse
I've been hypo for 15 years and know all about that, never switched over until now. I know its the interferon. Did you have the rapid pulse rate or high blood during the hyper period. Had blood done last week and cholesterol has dropped a lot. Very strange since I been on this high fat diet while taking the meds. I think thats due to being hyper too. I know hypo cause cholesterol to rise.
its 150mcg. I don't think its the anxiety causing the high pulse because I just find out about this yesterday and its been high for a few weeks now, but especially high today, 120. I will keep an eye on it as the blood is high also and that's not normal for me.
To: FloridaMouse
I've been hypo for 15 years and know all about that, never switched over until now. I know its the interferon. Did you have the rapid pulse rate or high blood during the hyper period. Had blood done last week and cholesterol has dropped a lot. Very strange since I been on this high fat diet while taking the meds. I think thats due to being hyper too. I know hypo cause cholesterol to rise.
My thyroid did the same thing while I was on tx. I was at 112 of synthroid and was down to 88 by the time I got off tx. They did the same thing with me that they are doing with you, they did gradual reductions to see if and where it would level out. Keep in mind it take approximately 3 weeks for a dose change to take effect.
Mouse
Mouse
PS, anxiety over this is probably adding to your heart rate. Happens to me like that.
Glad you got a call back from the doc. Let me know what your pharmacist says about the dosage.
As I mentioned, I take levothyroxine which is a generic version of synthroid and my dosage is .025mg and I take 1 and a half pills once a day (early morning). There isn't a pill that is dosed between .025 mg and .050 mg so my doc told me to take 1.5 pills to get to the .0375 mg she wanted me to take. That small dose is doing the trick for me. That dose took my TSH from 8 down to 2.
Seems like a huge difference between my dose of .0375 and your original dose of 150. Maybe Synthroid and Levothyroxine are dosed differently? Is your 150 written as mg?
As I mentioned, I take levothyroxine which is a generic version of synthroid and my dosage is .025mg and I take 1 and a half pills once a day (early morning). There isn't a pill that is dosed between .025 mg and .050 mg so my doc told me to take 1.5 pills to get to the .0375 mg she wanted me to take. That small dose is doing the trick for me. That dose took my TSH from 8 down to 2.
Seems like a huge difference between my dose of .0375 and your original dose of 150. Maybe Synthroid and Levothyroxine are dosed differently? Is your 150 written as mg?
Doc called and he will decrease it to .137 but that seems like a small increase when I'm taking 150 now. Oh well I will talk to the pharmacist about it as I think that . decimal might have something to do with it. My heart is racing like crazy. Geeez its always something.
Well, that's ****, Tippy! Why wouldn't your doc have the courtesy of telling you what to do about it instead of just giving you labs that are obviously going to upset you (as they would all of us)?
Personally, I would not take any more synthroid until you talk to your doc. I am hypo and I'm on levothyroxine and I do know that hypo can turn to hyper and, since your thyroid labs are out of whack showing hyper, I would not keep taking medication for hypo.
If, by the time you get to talk to your doc, he/she tells you to keep taking Synthroid anyway, well, you've done no harm because hypo is probably less serious than hyper.
Most docs have an on-call doctor for after-hours so I hope they call you.
Personally, I would not take any more synthroid until you talk to your doc. I am hypo and I'm on levothyroxine and I do know that hypo can turn to hyper and, since your thyroid labs are out of whack showing hyper, I would not keep taking medication for hypo.
If, by the time you get to talk to your doc, he/she tells you to keep taking Synthroid anyway, well, you've done no harm because hypo is probably less serious than hyper.
Most docs have an on-call doctor for after-hours so I hope they call you.
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