Aa
Beginning to doubt my dosage and my sanity... Can you help?
I will try to keep this short, but I think I'm loosing it! I went to a friend's vacation home about 3 & 1/2 hours away from my home, but then thought I had to come home two days later because I "literally" forgot what day it was... and came home an entire day early! To an organized person who traveled almost to excess for business before I had my daughter about 5 years ago, this seems almost frightening to me. I had a TT in Sept '07, RAI in Nov. and been trying to level out on meds ever since. I take 137mcg of Levothyroxine and 25 of Cytomel daily. On March 11th (my last endo visit) my numbers were:
free T3 - 5.7
free T4 - 0.94
Thyrogolobulin <0.1
Anti Thyroglobulin <4
TSH 0.80
Since I never took thyroid meds b4 surgery, I have no frame of reference for all of this. I do know for cancer suppression that I should have a TSH close to 0, but that's about it. I question the Cytomel and how effective it is vs. Levothyroxine only. I asked my doctor if I could go on Levothyroxine exclusively, as I was having difficulty remembering to split my 25 Cytomel dosage into two. It also made me feel a little jumpy late in the day and hard to sleep at night, when I forgot to take the second dose in a timely fashion. He didn't want me to stop the cytomel, but asked that I take the entire dosage in the morning after the Levothyroxine. Said we should try that first. Then he patted me on the head and sent me home for the longest res pit between visits I've had thus far... 3 months!
I have since exprienced a couple of senarios, one of which I stated above. But I also had the feeling I was going to faint about two week age. Completely unexpectedly, while shopping (I'm not a fainter, but I thought hey, this must be what fainting feels like...) Everything just went black. I didn't actually fall to the ground, and I was fine, but the episode did scare me. I know this can happen with low blood pressure and did in fact, happen to me many times when I was young getting up from a laying down postion. But it hasn't happend to me in at least 20 years and my blood pressure is always at the tall end of normal. This fainting thing seemed to happen for no reason while I was standing up!
I had another experience while visiting my friend (above) that I went from feeling fine, or so I though, to "I'm going to pass out (this time food related, I guess) if I don't get some food NOW!" Also weird for me. I felt woozy and slightly disoriented, and felt I could have fainted if I didn't get something in me or go directly to bed. I have the feeling as well, that I'm exerting myself too much just walking up a slight incline for a couple of blocks. The feeling is like I'm not going to get enough air in my lungs and passout. Never had that pre-TT. I have suffered from low calcium and very low vit. D. Both which I self-diagnosed and brought to my endo for confirmation. I am subsequently being treating for these deficiencies with modest success right now. Lots of joint pain, most of the time moving really slow getting up from a resting position. Does all of this seem normal? Sometimes I feel like I have a ton of energy, but it doesn't come to me like it used to, or as often... where before I could clean the whole house (and not a small house) in one day, top to bottom! And I mean REALLY CLEAN! Other days, ok most days now, I feel like the couch is where I'd like to grow roots.
Anyone (with more knowledge on these thyroid test numbers, than I... or just plain experience with something like it) have any information for me about this? I thought I was doing well post cancer. These recent events have scared me and gotten me to question myself and really "look" at my symptoms and dig a little deeper. I tend to focus on how "right" everything is going, and ignore what could be wrong... Usually a good trait... I thought...
Your help and input is truely appreciated! And thanks for all your help in the past as well!
free T3 - 5.7
free T4 - 0.94
Thyrogolobulin <0.1
Anti Thyroglobulin <4
TSH 0.80
Since I never took thyroid meds b4 surgery, I have no frame of reference for all of this. I do know for cancer suppression that I should have a TSH close to 0, but that's about it. I question the Cytomel and how effective it is vs. Levothyroxine only. I asked my doctor if I could go on Levothyroxine exclusively, as I was having difficulty remembering to split my 25 Cytomel dosage into two. It also made me feel a little jumpy late in the day and hard to sleep at night, when I forgot to take the second dose in a timely fashion. He didn't want me to stop the cytomel, but asked that I take the entire dosage in the morning after the Levothyroxine. Said we should try that first. Then he patted me on the head and sent me home for the longest res pit between visits I've had thus far... 3 months!
I have since exprienced a couple of senarios, one of which I stated above. But I also had the feeling I was going to faint about two week age. Completely unexpectedly, while shopping (I'm not a fainter, but I thought hey, this must be what fainting feels like...) Everything just went black. I didn't actually fall to the ground, and I was fine, but the episode did scare me. I know this can happen with low blood pressure and did in fact, happen to me many times when I was young getting up from a laying down postion. But it hasn't happend to me in at least 20 years and my blood pressure is always at the tall end of normal. This fainting thing seemed to happen for no reason while I was standing up!
I had another experience while visiting my friend (above) that I went from feeling fine, or so I though, to "I'm going to pass out (this time food related, I guess) if I don't get some food NOW!" Also weird for me. I felt woozy and slightly disoriented, and felt I could have fainted if I didn't get something in me or go directly to bed. I have the feeling as well, that I'm exerting myself too much just walking up a slight incline for a couple of blocks. The feeling is like I'm not going to get enough air in my lungs and passout. Never had that pre-TT. I have suffered from low calcium and very low vit. D. Both which I self-diagnosed and brought to my endo for confirmation. I am subsequently being treating for these deficiencies with modest success right now. Lots of joint pain, most of the time moving really slow getting up from a resting position. Does all of this seem normal? Sometimes I feel like I have a ton of energy, but it doesn't come to me like it used to, or as often... where before I could clean the whole house (and not a small house) in one day, top to bottom! And I mean REALLY CLEAN! Other days, ok most days now, I feel like the couch is where I'd like to grow roots.
Anyone (with more knowledge on these thyroid test numbers, than I... or just plain experience with something like it) have any information for me about this? I thought I was doing well post cancer. These recent events have scared me and gotten me to question myself and really "look" at my symptoms and dig a little deeper. I tend to focus on how "right" everything is going, and ignore what could be wrong... Usually a good trait... I thought...
Your help and input is truely appreciated! And thanks for all your help in the past as well!
AR-10
Neither he (my endo) nor I would know anything about any T3 resistance I may have, as I've never been on just a T4 drug only. In fact, there are no real records of my total levels including Free T3 & Free T4 prior to my TT. I was told they were going to take blood to check my levels when they found the nodule, but they just told me the levels came back "normal". And, it was an ENT I was seeing at the time I found my nodule. Not sure if she even knew to test for the free T's. Scary, I know! Thanks for the dialog. It is helping tremendously.
social17
Thanks for your response. I have subsequently done a bit of reading regarding the generic vs. name brands and it's spurred me on to find out more. Do you have any particular links you'd wish to share here?
Neither he (my endo) nor I would know anything about any T3 resistance I may have, as I've never been on just a T4 drug only. In fact, there are no real records of my total levels including Free T3 & Free T4 prior to my TT. I was told they were going to take blood to check my levels when they found the nodule, but they just told me the levels came back "normal". And, it was an ENT I was seeing at the time I found my nodule. Not sure if she even knew to test for the free T's. Scary, I know! Thanks for the dialog. It is helping tremendously.
social17
Thanks for your response. I have subsequently done a bit of reading regarding the generic vs. name brands and it's spurred me on to find out more. Do you have any particular links you'd wish to share here?
Generic thyroid is not as effective....I have read many articles about this...Thyroid replacement is one of a few meds that you should never take generic for. Cytomel made my heart race and then I would get a little dizzy. I don't know if this helps any.
I don't understand it either. You have plenty of room for you T4 to go up, and plenty of room for your T3 to go down.
From the information you have provided, he could keep you slightly hyper (for cancer suppression) on a regular T4 medication like Synthroid.
He didn't say anything about T3 resistance, did he?
As for your Thyroglobulin, it's really low. That's good. Your Anti Thyroglobulin is realy low. That's great!
From the information you have provided, he could keep you slightly hyper (for cancer suppression) on a regular T4 medication like Synthroid.
He didn't say anything about T3 resistance, did he?
As for your Thyroglobulin, it's really low. That's good. Your Anti Thyroglobulin is realy low. That's great!
I don't remember being shaky, just woozy. I asked my pharmacist about generic vs. name brand and she said there was no difference. That they were all subject to the same FDA regulations and inspections, so I never asked my endo about a name brand switch. I might try to see if he would be amenable to switching me over the phone but I bet it's for insurance reasons. But what do you think his reasoning for trying to keep me on Cytomel, when I requested to come off of it? I thought there was some reasoning like the cancer thing...? When I requested to come off of it, I was thinking it would be a more even keeled energy vs. a jolt in the morning, then a lag, then not being able to sleep for whatever reason...
I think you need to ditch the Cytomel and up your Levo a bit.
I think you need to ditch the Levothyroxine and try a brand name like Synthroid or Levoxyl or Levothroid.
I have no idea why your TSH isn't lower with your Free T3 as high as it is. Your T4 is a little low, but your T3 is high enough that you should be considered Hyperthyroid. The only thing I can think of is your TSH is not lower because your T4 level is triggering a request for more.
I realize that is where the doctor wants you. He wants your TSH below 1.0, maybe as low as 0.1, but your T3 could fall below upper limits and still put you there. I think the Cytomel is not needed.
but I'm not a doctor.
The episodes of near fainting sound like they may be brought on by sugar levels. Do you get shaky when these spells occur?
I think you need to ditch the Levothyroxine and try a brand name like Synthroid or Levoxyl or Levothroid.
I have no idea why your TSH isn't lower with your Free T3 as high as it is. Your T4 is a little low, but your T3 is high enough that you should be considered Hyperthyroid. The only thing I can think of is your TSH is not lower because your T4 level is triggering a request for more.
I realize that is where the doctor wants you. He wants your TSH below 1.0, maybe as low as 0.1, but your T3 could fall below upper limits and still put you there. I think the Cytomel is not needed.
but I'm not a doctor.
The episodes of near fainting sound like they may be brought on by sugar levels. Do you get shaky when these spells occur?
I mean I know the ranges posted in the report. The free T3 is higher than the desired range of 2.3 - 4.2 and is marked as "H" in the results column. And that the free T4 is on the low side, but that tells me nothing really. I'm not sure what that means to me and what side effects apply. I'm also very confused about the thyroglobulin and it's significance when you don't have a thyroid left. That's why I posted the question. You guys have the experience to answer all this stuff for me. I defer to all of you who have "been there, done that"... Thanks in advance.
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