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Thyroid Levels after stopping Eltroxin

I have for the past 5 months gradually suffering from high anxiety levels and decided that I needed to have a check up on my thyroid again. Well it turns out to be hyper thyroid. 4 and a half years ago I had surgery for a nodule which they removed, the right side of my thyroid. It was encapsulated in the thyroid so they did not feel it was necessary for Kemo.They then put me on a dose of 0.05mg of eltroxin to check if that would be the right dose for me. 3 years all was good.  I have been clear ever since, with regular checkups. About a year ago I was forced to go to a public hospital for check up which the doctor decided that I should go on a higher dose which was doubled to 0.1mg. I was told by the pharmacist that this was a high dose and decided to not take it to regularly which I did not for approximately 6 months. Then the past + - 5 months I thought I best start taking it regularly as I don’t want to go against what the doctor had told me. Big Mistake! Since then I was very anxious but tolerable. The last month however has been a nightmare! Went to a different doctor who took blood and pulled a report a month and a half prior to us meeting where I landed up in hospital due to a huge panic attack. He pointed out to me that my TSH level was 0.01! The emergency room did not see this. He then immediately told me to stop taking the eltroxin and go for blood test. Went for blood tests the following day (Bering in mind I was still taking the eltroxin just before giving blood) my results came back and this is how it was. T4 was 15.7 (normal ranges 7 - 16) T3 was 5.0 (normal ranges 3.8 - 6) it has been exactly 14 days since I stopped the eltroxin and have been feeling better but very up and down still with the panic attacks still frequent. I’m taking Xanor 0.5mg s/l to cope. My question is how long before my levels balance out and feels back to normal again???? Any one please help!! The doctor is saying I should be over the symptoms of hyper thyroid but does not completely feel that way...
26 Responses
1756321 tn?1547095325
From Medline Plus - Factitious hyperthyroidism (aka iatrogenic or "doctor-induced" hyperthyroidism)...

"You must stop taking thyroid hormone. If you need to take this medicine, you will need to reduce the dose.

You should be re-checked in 2 - 4 weeks to be sure that the signs and symptoms of hyperthyroidism are gone. This also helps to confirm the diagnosis."
Avatar universal
It sounds like you are feeling some relief from the hyper symptoms???

It takes 4-6 weeks for thyroid meds to be completely out of your system, but hyper symptoms should continue to improve as time goes by.  If you don't feel that you are continuing to improve, you might ask your doctor to test your levels to see what they are now.  Panic attacks can be symptoms of both hypo and hyper.  If your symptoms worsen, it could be because your levels are now too low, i.e. you needed a meds reduction, but still need a lower dose of meds.
Avatar universal
Hi Red Star and goolarra

Thank you so much for your responses. The Doctor has informed me that I should go for another test to see where my levels are at so I will be going on Monday morning to give blood and should have results back by Wednesday. This will be 18 days after my last test was done as results shown above. I must mention from the day I stopped with the eltroxin the Hypo symptoms did stop more on the basis of the most intense or should I say high levels of hypo symptoms after + - 11 days. "I thought I was going to losing my mind!!” Since then I have had fluctuating feelings of good emotions to panic/anxiety attacks. It’s really rattled me and got me feeling extremely emotional, confused and not sure of myself anymore ....if I’m okay or not okay, this after the "Hypo". To put it simply I just feel nervous and anxious most days and feel as though I’ve lost a bit of reality, a kinda stuck between 2 worlds, never sure of myself anymore. This has been by far the most scary/emotional/traumatic experience I have ever been through! I must say that my prayers go out to people that suffer this for long periods of time. I’m normally a friendly outgoing person but after this experience it feels as though I have lost a piece of myself. Now taking the Zanor daily just is helping me "cope", again lost between two worlds. I have even considered taking some form of an anti depressant until things normalize. I guess my real question right now will be more or less how long will it take or in which rages should I be in to safely say I’m "good". I think the contribution to the anxiety right now could also be psychological having gone through this experience. Could I be having fluctuating sensations like a come down from the "hyper"..
Thanks in advance!
Avatar universal
Hi Red Star

Thank you so much for your response. The Doctor has informed me that I should go for another test to see where my levels are at so I will be going on Monday morning to give blood and should have results back by Wednesday. This will be 18 days after my last test was done as results shown above. I must mention from the day I stopped with the eltroxin the Hypo symptoms did stop more on the basis of the most intense or should I say high levels of hypo symptoms after + - 11 days. "I thought I was going to losing my mind!!” Since then I have had fluctuating feelings of good emotions to panic/anxiety attacks. It’s really rattled me and got me feeling extremely emotional, confused and not sure of myself anymore ....if I’m okay or not okay, this after the "Hypo". To put it simply I just feel nervous and anxious most days and feel as though I’ve lost a bit of reality, a kinda stuck between 2 worlds, never sure of myself anymore. This has been by far the most scary/emotional/traumatic experience I have ever been through! I must say that my prayers go out to people that suffer this for long periods of time. I’m normally a friendly outgoing person but after this experience it feels as though I have lost a piece of myself. Now taking the Zanor daily just is helping me "cope", again lost between two worlds. I have even considered taking some form of an anti depressant until things normalize. I guess my real question right now will be more or less how long will it take or in which rages should I be in to safely say I’m "good". I think the contribution to the anxiety right now could also be psychological having gone through this experience. Could I be having fluctuating sensations like a come down from the "hyper"..
Thanks in advance!
Avatar universal
Hi goolarra

Thank you so much for your respons. The Doctor has informed me that I should go for another test to see where my levels are at so I will be going on Monday morning to give blood and should have results back by Wednesday. This will be 18 days after my last test was done as results shown above. I must mention from the day I stopped with the eltroxin the Hypo symptoms did stop more on the basis of the most intense or should I say high levels of hypo symptoms after + - 11 days. "I thought I was going to losing my mind!!” Since then I have had fluctuating feelings of good emotions to panic/anxiety attacks. It’s really rattled me and got me feeling extremely emotional, confused and not sure of myself anymore ....if I’m okay or not okay, this after the "Hypo". To put it simply I just feel nervous and anxious most days and feel as though I’ve lost a bit of reality, a kinda stuck between 2 worlds, never sure of myself anymore. This has been by far the most scary/emotional/traumatic experience I have ever been through! I must say that my prayers go out to people that suffer this for long periods of time. I’m normally a friendly outgoing person but after this experience it feels as though I have lost a piece of myself. Now taking the Zanor daily just is helping me "cope", again lost between two worlds. I have even considered taking some form of an anti depressant until things normalize. I guess my real question right now will be more or less how long will it take or in which rages should I be in to safely say I’m "good". I think the contribution to the anxiety right now could also be psychological having gone through this experience. Could I be having fluctuating sensations like a come down from the "hyper"..
Thanks in advance!
Avatar universal
You don't have to post separate answers to each of us.  We can all see them.  It's fine, just for future reference...

It's not easy to say what range you should be in.  We all have to find out for ourselves where we feel best.  Individual differences can be huge.  

One thing that can help is having FT3, FT4 and TSH tested on every blood draw.  If you do that, you will see where you feel good.  If lab values later change, you'll know which direction to adjust your meds to get back to those levels where you felt well.  That point is different for all of us.

As a general rule, most people find that FT4 has to be around the middle of the range before hypo symptoms are relieved.  FT3 often has to be upper half of range.  That's a general rule, but remember, lots of us break it.  I've gone hyper with labs that most people would still be hypo with.  Track your labs (do you have any old ones from when you were feeling good to look at now?), jot symptoms and meds dose down on the report, and you will be building a really valuable history.

By all means, if you need temporary help from meds until you get through this, do what it takes to feel better.

Best of luck, and let us know how it all turns out...
Avatar universal
Hi

So would it be "safe" to say that with T4 as high as it was 18 days ago i would be having these "conditions/symptoms" (anxiety ect.)? If so, more or less how long would you say it would take for it to "normalize". I asking just on the fact that everyday is a bit of a struggle for me right now and not sure how it works/takes to get balance.

Thanks again!

Avatar universal
Am I expecting too much too soon...P.s never kept records of reports before as I have moved around a bit. As a matter of fact busy doing a move to New Zealand soon, so stress is not helping me either...What a time for this to happen!! Do you have any recommendations on a product I could use to ease these symptoms I could recommend to my doctor? The doctor is a specialized homeopathic doctor as at this time I cannot afford to go to specialist until getting to New Zealand.
Avatar universal
It does take patience because it takes thyroid meds so long to go out of your system.  

It's so hard to say how long it will take because we're all different.  Some of us will process thyroid hormones out of the body faster than others.  I think you should be feeling somewhat better after a couple of weeks.  You should start feeling better and better as time goes on.  

Start keeping records of your labs.  That's one of the best things you can do for yourself.  It's especially important for someone like you, who moves around a lot.  

Stress makes it all worse; there's no question about that.

I'm afraid I have no suggestions of what you can do.  Have you asked your doctor what he suggests?  
Avatar universal
Okay so here are some results i got from the doctor leading up to this point ie the start of the episodes.

(This is when i landed up in the emergency room)
Dated: 15-09-2013                         Reference/Ranges:
           Free    T4 :13.2                   7.2 - 16.4   pmol/L
           Free    T3 : none was done          
               S-TSH : 0.10                   0.37 - 3.50 mIU/L

Dated: 15-10-2013                          Reference/Ranges:
           Free    T4 :14.3                    7.2 - 16.4   pmol/l
           Free    T3 :none was done
                S-TSH: 1.12                    0.37 - 3.50 mIU/L

Dated:  07-11-2013                          Reference/Ranges
           Free    T4 : 15.7                    7.2 - 16.4   pmol/L
           Free    T3 : 5.0                      3.8 - 6.0    pmol/L
                 S-TSH: 0.68                    0.37 - 3.50 mIU/L

I will be tracking back to previous lab results to find my "good range"as you mentioned
Avatar universal
Well, you can see the progression of the FT4 upward.  It was already a bit high at 65% of range (50% is the target) in September, and it went to 77% in October and 92% in November...much too high.  It's no wonder you were hyper.

Unfortunately, we only have one FT3.  It's at 55% of range, which is just about right for FT3.

You said you landed in the ER in September.  How were you feeling by October and November.  Were you getting more and more hyper?
Avatar universal
Hi

It did get worse, yes i did get more and more hyper. The sensations have gotten better but by no means gone. It increased from date of emergency room and i still continued with eltroxin as i did not know what was happening. Only stopped the eltroxin on the 7th November. Then the Extreme out of my mind "hypo" symptoms stopped a week later on the 17th. I then decided to stop taking the xanor that day as i was feeling great! Then that evening the only way i can explain it was like a bus had just hit me! The anxiety shoot through the roof! That left me stumped/confused! What the hell was going on?? I thought that the worst was over feeling really good but that would be the Hyper symptoms feeling really good then reverse? Was not aware that this would happen. Hence my comment "never sure of myself" not sure when is okay...I have attempted to see if i can go through a day without the xanor from time to time to see if i can "cope". For example Friday morning drive to work and the sensations started to build up and up to boiling point and had to take the zanor. Come Sunday, same thing. decided to see how i would feel without the zanor and same thing happen again....just for the record i really hate to take tablets that have any addictive additives so it gets me nervous on how much longer i would need to take it...I think im expecting to much to soon...hating this!! Anyways...

I took your advice and located all my previous results through calling all the doctors and hospitals ect Amazing what a little of persistence can do, so now have some history built up. Gave blood today and will have results on Wednesday which i will post with older ones i recently acquired .

Thanks again goolarra!! Your feed back is really helping!
Avatar universal
Just a question

You mention "we beak it" would you be saying that its almost like a sudden onset of Hyper symptoms? Almost like a here and there discomfort of Anxiety  before the "break"sudden onset? If so would you say the "come down" would take more time? Takes longer with hypo symptoms to dissipate? You were referring to FT3?

Again thanks for your replies!!
Avatar universal
I'm saying that many of us find ourselves hypo or hyper when labs are "in range".  You don't have to be out of range in order to be hyper (overmedicated).  We all have a personal comfort range, and we will feel hypo or hyper outside of that, even if labs are "normal".  

The longer you were overmedicated, the longer it can take for hyper symptoms to go away.  The higher your FT3 and FT4 levels before reducing meds, the longer it can take.  Also, some of us process meds out of our system faster than others.  It's all very individual.

I'll look forward to seeing your new results.  However, I am going away on Wednesday for the holiday (our Thanksgiving), so it may be Friday before I can get back to you.  
Avatar universal
Hi There

I hope you had a good Thanksgiving. Well i have received my results back and here is how it goes. I'm not sure if this is good but seems like its on the rise (T4 and T3) but TSH rising at the moment. Possibly as you mentioned that the meds are still in my system...as its only been 3 weeks almost to the day since i stopped the meds.

The thing which bugs me is when i wanted to go earlier for tests (as i have gone now) because i am leaving soon. His reply was that its too soon(which would probably be correct). I then said i was not feeling any better so he decided he wanted to have them done(sooner, the date i wanted to go). Then after seeing the results he said that he is pleased to see the TSH has gone up slightly but the T4 had gone slightly up and he was not concerned about the T4 but more on the TSH result. I then asked him, might it be that it is to soon as the meds might still be in system. His reply was he does not believe that it could, but possibly because of my stress and i should stop overanalising all of this....The contradiction is that the first time we discussed going for the tests "sooner" he said no its too soon but went earlier as i was not feeling better. I believe he did not remember his own words to me.....but anyway. Im hoping you could shed some light on this.

Im including the previous results i posted with the latest one at the bottom.

(This is when i landed up in the emergency room)
Dated: 15-09-2013                         Reference/Ranges:
           Free    T4 :13.2                   7.2 - 16.4   pmol/L
           Free    T3 : none was done          
               S-TSH : 0.10                   0.37 - 3.50 mIU/L

Dated: 15-10-2013                          Reference/Ranges:
           Free    T4 :14.3                    7.2 - 16.4   pmol/l
           Free    T3 :none was done
                S-TSH: 1.12                    0.37 - 3.50 mIU/L

Dated:  07-11-2013                          Reference/Ranges
           Free    T4 : 15.7                    7.2 - 16.4   pmol/L
           Free    T3 : 5.0                      3.8 - 6.0    pmol/L
                 S-TSH: 0.68                    0.37 - 3.50 mIU/L
(latest results)
Dated: 25-11-2013                           Reference/Ranges
           Free    T4: 16.3                     7.2 - 16.4   pmol/L
           Free    T3:  5.1                      3.8 - 6.0    pmol/L
                 S-TSH: 1.12                   0.37 - 3.50  mIU/L

Thanks In advance.

P.s As mentioned previously i acquired all my previous results from way back and would like you to take a look at them. Can i possibly email then to you??
1756321 tn?1547095325
Interesting that your free T4 isn't very high considering your TSH is very low.  These are my labs to give you a comparison...

Optimal:
TSH - 1.5 mU/L (0.20 - 4.00)
Free T4 - 16.6 pmol/L (10 - 20)

Hyperthyroidism:
TSH: <0.05 mU/L (0.20 - 4.00)
Free T4: 25 pmol/L (10 - 20)
Free T3: 8.0 pmol/L (2.8 - 6.8)
Avatar universal
Hi

Need I be concerened about this, as I don't really feel well anymore..my heart rate goes up and down and I just don't feel as though I'm coping....I'm going for another blood test Monday to check again...
Avatar universal
The doctor says he is not to concerned about the FT4 but more of the TSH right now and that I should have started to feel better already...I have to take meds 3 times a day now just to cope with the symptoms.
1756321 tn?1547095325
Has the doctor tested for thyroglobulin serum? I forgot to add that I had another two month bout of Hashitoxicosis (due to antibodies seen with Graves disease) causing far worse hyperthyroid symptoms than my build of thyroxine (the hyperthyroid lab I posted above).

Of great surprise, my labs showed a TSH was 6mU/L and my free T4 was 13 pmol/L while I was sitting in the doctor's office with raging hyperthyroid symptoms! But of note, my thyroglobulin serum was high.

"The 34 patients with Graves 's disease were followed for an extended period of time before, during, and after various forms of therapy. All hyperthyroid patients had elevated serum thyroglobulin (HTg) levels before therapy, regardless of cause."

"Serum thyroglobulin levels may have utility in distinguishing Graves' disease from factitious thyrotoxicosis. In Graves' disease, the level of serum thyroglobulin is increased, whereas in factitious disease the levels are decreased."
Avatar universal
Three weeks is a little early.  It will give you an indication of where labs are going, but you have to take into account that it will still be a few more weeks before you are totally meds free.

So, the trend I see here is that FT4 continues to rise as does FT3.  Since FT3 and FT4 are what determines your symptoms, it's perfectly logical that you wouldn't be feeling better.  Your labs are continuing to get more "hyper" despite discontinuing meds.  Three weeks after discontinuing meds is a little short, but you should be seeing improvement.  TSH causes NO symptoms.  Until you see your FT3 and FT4 levels starting to fall, you will not feel better, no matter what your TSH is.  I disagree completely with your doctor...you should NOT have started to feel better already, because your FT3 and FT4 continue to get "worse".  

If you would rather, you can send me old labs in a PM.  Just click on my name at the top of this comment to get to my profile page and click "send message".

Once again, you do not have to be out of reference range to feel hyper.  We all have a personal reference range, and once outside of that, we will feel hypo or hyper, no matter what the population range is.  I've been hyper with FT3 and FT4 much lower than yours.
Avatar universal
Hi goolarra

goolarra. I have sent you a message as you mentioned in your comment. Just wanted to say Thank you! Thank you! Thank you!!!! Hope to get a response as soon as you can as it would really help right now.

Hi Red Star

Firstly, Thanks for your response. To answer you question, no they have not tested for thyroglobulin serum. The only tests that have been done are the ones posted but have previous results dated last year for that which turned out fine. But has symptoms seem worst now with head aces in the back of my head which never experienced before. Increased doses of tranquilizers each week.
Avatar universal
goolarra and Red Star

Im going in on Monday to have tests done again. He has given me the blood test page that gets ticked for what tests he wants done(GP) and he is only doing TSH and free T4 again. What other tests should i have done to check for other underlining maybe as you mentioned thyroglobulin serum. This i can request myself when going into the lab.

Thanks again in advance!
Avatar universal
Definitely check FT3.

If it's possible, also check off TSI (thyroid stimulating immunoglobulin).  I can't find it at the moment, but if you haven't been tested for TPOab (thyroid peroxidase antibodies) and TGab (thyroglobulin antibodies), which are the markers for Hashi's, you could check those, too.

Tell me more about the nodule you had.  Was the whole right lobe removed or just the nodule?  Did pathology indicate it was malignant?  Did they elaborate on the characteristics of the nodule?
Avatar universal
Hi did cant seem to find on this report under thyroid. They only have (TSH, T4) combined. Then TSH, Then TSH (umbilical cord blood). Then Free T4, T3. I will as the lab to look on there systems when i get there to find it and tick those off hopefully. I sent you a message on your profile if you could reply to me on that to please.

Thanks again in advance!

Reece
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