I forgot to mention,
Yesterday I could not keep my eyes open by 9 am ( i wake up at 5:30 am) and I decided to take my Diotroxin in the morning from today and not at night ( when I take all my other meds) and I have more energy today ( it's 12pm now). I still have some energy left. So it does seem like the Seroquel does have an effect on the thyroid meds somehow.
Medications and my own observations
1/2006 Eltroxin .5mg
11/2006 Increase Eltroxin to 1mg
5/2007 Started Estrofem 1mg
Changed Eltroxin to Diotroxin due to severe itching on Eltroxin
2/2008 Enlarged left eye, bad infection in right eye
MRI & cat scan show lesions on eye muscles and muscles are enlarged
Specialist said I had TIA
Was taking ZOLOFT 50 mg at the time
2009 No thyroid test done. Diagnose Bipolar Manic and prescriped SEROQUEL 400mg p/d
Had bad reaction to ZOLOFT 12/2008
17 Jan 2011 - Thyroid ultrasound show no abnormalities on what is left of thyroid.
Found the following during research
1 "Slightly elevated T3 levels may also occur in pregnancy or during estrogen therapy. (Dr.M.Aroon Kamath
MB BS, MS, FRCS(Edinburgh))(http://www.*****************/forums/viewtopic.php?f=83&t=47131)"
2 Hypothyroidism: Clinical trials with SEROQUEL demonstrated a dose-related decrease in total and free thyroxine (T4) of approximately 20% at the higher end of the therapeutic dose range. Reverses when SEROQUEL treatment is stopped. (http://www.accessdata.fda.gov/drugsatfda_docs/label/2004/20639se1-017,016_seroquel_lbl.pdf)
Observations based on all previous test results.
1 Estrofem could have increased FT3 thus TSH started decreasing since 2007 when Hormone replacement therapy started ( lead to hyper symptoms )
2 Diotroxin (combination T4/T3) also increased T3 levels since treatment started in 2007 ( lead to hyper symptoms )
3 Seroquel suppressed T4 since treatment started in 2009 ( lead to hypo symptoms )
That is why I am experiencing Hyper as well as Hypo symptoms.
Hypo symptoms - Constipation, Feeling sluggish, run down, lethargic , I yawn a lot to get oxygen
Hyper symptoms - I feel overheated, skin feels as if it is burning, I am losing weight the one day and gaining the next day, I feel irritable, My skin looks thinner,
My muscels feel week, I am having difficulty falling asleep , but then cannot wake up the next morning, I have been diagnosed as having panic disorder,
My eyes seem to be enlarging
Combined symptoms - I feel fatigued, exhausted, My hair is coarse and dry and falling out badly, I have pains in joints, hands and feet, I have no sex drive,
My eyes feel gritty, dry and burns, I have tinnitus.
Question
1 Would the best course of action be to change the thyroid medication back to a T4 containing medication only in order to avoid the high concentration of T3
should the next thyroid test show that the FT3 levels are to high? ( which I suspect will be the case ).
I will be going for the next thyroid test in 3 weeks (testing TSH, FT4, Ft3 and antibodies)
Let me repost the lab results to make it more readable
1/2006
TSH 3.3 Range .35 to 4.9
FT4 18.3 Range 9 to 19
11/2006
TSH 21.77 Range .35 to 4.94
FT4 12.7 Range 9 to 19
2007
TSH 11.94 Range .35 to 4.94
FT4 11 Range 9 to 19
Ft3 2.9 Range 2.6 to 5.7
2008
TSH .2 range .27 to 4.8
FT4 16.7 range 11.8 to 22
2010
TSH <.01 range .35 to 4.94
FT4 13.4 range 9 to 19
2011
TSH .05 range .35 to 4.94
FT4 10.3 range 9 to 19
Hi gimel
I did some research and gone through all my previous blood test and put that and all medication changes and things together and this is what I got. Can you please have a look and give me your input.
Thanks
Maria
1993 Subtotal Thyroidectomy. Grave's disease - 5.4mm left of Left lobe & 5.6mm left of right lobe
1996 RAI treatment due to Hyperthyroidism not reacting to medication
01/2006 TSH=3.3 Range .35 TO 4.9 Labresult=Euthyroid Meds=Eltroxin .5mg FT4=18.3 Range 9 TO 19.0
11/2006 TSH=21.77Range .35 TO 4.9 Labresult=Primary Hypothyroid
FT4=12.7 Range 9 TO 19.0 Meds=Increase Eltroxin from .5 to 1mg
5/2007 TSH=11.94Range .35 TO 4.9 Labresult=SubClinical HypoThyroid FT4=11 Range 9 TO 19.0 Meds=Eltroxin changed due to severe itching, FT3=2.9 Range 2.6 TO 507 Changed to Diotroxin (t4/t3 combination)
2/2008 TSH=0.2 Range .27 TO 4.8 Enlarged left eye, bad eye infection in right eye FT4=16.7 Range 11.8 TO 22 MRI & Cat scans show lesions on eye muscles and enlarged muscles, Specialist said had TIA, Was taking ZOLOFT 50MG at the time
2009 NO THYROID TEST DONE Diagnosed Bipolar Manic Started Seroquel 400mg p/d in May 2009 Bad reaction to ZOLOFT 50mg (12/2008 to 1/2009)
4/2010 TSH=< .01 Range .35 TO 4.9 Labresult=SubClinical Hyperthyroid FT4=13.4 Range 9 TO 19.0
1/2011 TSH=0.05 Range .35 TO 4.9 Labresult=SubClinical Hyperthyroid / FT4=10.3 Range 9 TO 19.0 T3 Hyperthyroid
17-Jan-11 Thyroid Ultra scan No abnormalities on what is left of thyroid.
Found the following during research
1 "Slightly elevated T3 levels may also occur in pregnancy or during estrogen therapy. (Dr.M.Aroon Kamath
MB BS, MS, FRCS(Edinburgh))(http://www.*****************/forums/viewtopic.php?f=83&t=47131)"
2 Hypothyroidism: Clinical trials with SEROQUEL demonstrated a dose-related decrease in total and free thyroxine (T4) of approximately 20% at the higher end of the therapeutic dose range. Reverses when SEROQUEL treatment is stopped. (http://www.accessdata.fda.gov/drugsatfda_docs/label/2004/20639se1-017,016_seroquel_lbl.pdf)
Observations based on all previous test results.
1. Estrofem could have increased FT3 thus TSH started decreasing since 2007 when Hormone replacement therapy started ( lead to hyper symptoms )
2 Diotroxin (combination T4/T3) also increased T3 levels since treatment started in 2007 ( lead to hyper symptoms )
3 Seroquel suppressed T4 since treatment started in 2009 ( lead to hypo symptoms )
That is why I am experiencing Hyper as well as Hypo symptoms.
Hypo symptoms - Constipation, Feeling sluggish, run down, lethargic , I yawn a lot to get oxygen
Hyper symptoms - I feel overheated, skin feels as if it is burning, I am losing weight the one day and gaining the next day, I feel irritable, My skin looks thinner,My muscels feel week, I am having difficulty falling asleep , but then cannot wake up the next morning, I have been diagnosed as having panic disorder, My eyes seem to be enlarging
Combined symptoms - I feel fatigued, exhausted, My hair is coarse and dry and falling out badly, I have pains in joints, hands and feet, I have no sex drive, My eyes feel gritty, dry and burns, I have tinnitus.
Question
1 Would the best course of action be to change the thyroid medication back to a T4 containing medication only in order to avoid the high concentration of T3 should the next thyroid test show that the FT3 levels are to high? ( which I suspect will be the case ).
I will be going for the next thyroid test in 3 weeks (testing TSH, FT4, Ft3 and antibodies)
I suspect that the new doctor's opinion of you being hyper is based mainly on TSH, since most of the symptoms you have mentioned seem hypo to me. I also think that the low result on the FT4 test you had is inconsistent with being hyper. The only symptom that is somewhat unusual with hypothyroidism is the weight loss you mentioned, but we have even heard of that occasionally from hypo members.
So I think you should pay close attention to how you are feeling and if you notice any worsening of symptoms, I would not wait the full 4 weeks to go back to the doctor for a follow up. When you do go back I would take a copy of that checklist for hypo symptoms that I gave you previously and show the doctor the ones that you have. I also strongly suggest that you need to get the doctor to test you for free T3, along with the free T4 and TSH. I think you also need to ask if the doctor is going to be willing to treat you clinically, by testing and adjusting FT3 and FT4 as necessary to relieve symptoms. Symptom relief should be all important, not test results.
If it turns out that you you actually need an increase in meds, but your doctor is adamant about the TSH, then an alternative would be to include a separate T3 source in your meds, rather than just adding more of your current med. Remember that FT3 correlates best with hypo symptoms."
The doctor might also be interested in this quote from a large scientific study, reported in the BRITISH MEDICAL JOURNAL VOLUME 293 27 SEPTEMBER 1986 .
"We consider that biochemical tests of thyroid function are of
little, if any, value clinically in patients receiving thyroxine
replacement. Most patients are rendered euthyroid by a daily dose
of 100 or 150 mcg of thyroxine. Further adjustments to the dose
should be made according to the patient's clinical response."
Hi gimel,
I went to the 2nd dr yesterday, and he is of the opinion that the thyriod is overactive, based on the tsh level and full list of symptoms. He wants me to use a bit less than the normal 1 tablet dosage for 4 weeks, go for an ultrasound and re-test all levels (tsh, ft4, ft3 and antibodies) in 4 weeks time. The ultrasound is to rule out problems because when they removed the thyroid in 1993 they only removed 2/3 and when they did the radioactive iodine it might not have killed all of it. I gave him the last 6 years blood tests that I got from the previous dr and they really do go up and down. The last "normal" euthyroid state was in 2006. The year before I had the Transient Ischemic Attack. Since then it has just been going hyper ever so slowly.
So the new dr is of the opinion that the RAI was not very successfull and because of the shock of the TIA my thyroid might have just started working again. Is that possible? I know that my thyroid was fine after they removed the 2/3's and after my mothers suicide in 1995 it went all crazy hyper again and because I did not react favourably on the medication they did the Radioactive therapy.
Thanks a million, I'll definitely take it with. Hopefully I can convince him to do a proper test. I know the other GP won't. Already had a run with him and anti depressants 2 years ago where it ended up badly for me.
I went through the symptom list and the only ones that really apply that I have, is hypothermia, hair falling out badly ( especially the last 5/6 months ), no sex drive, the need to yawn, strange feelings in my neck ( neck stiffness ) and tinnitus. My body just doesn't seem to do the weight gain, I rather loose than gain.
I have also contacted the ThyroidClinic in CapeTown ( I live in SouthAfrica ) and I have asked for a referral to a doctor in Johannesburg. Hopefully, I'll get sorted with a good dr.
A little insomnia, so I happened to see your post. I suggest that for your appt. you use this link and check all the symptoms for hypothyroidism and identify any that you have, and then discuss it with the doctor. I also suggest that you discuss with him your desire to be tested for the biologically active thyroid hormones, free T3 and free T4, along with the TSH they always run. If he resists, then you should insist and not take no for an answer. Remember that you are the customer.
http://thyroid.about.com/cs/basics_starthere/a/hypochecklist.htm
Then I think it would be a good idea to take a copy of this link and discuss with the doctor as well. This link is a form letter from a good thyroid doctor. It is sent to the primary doctor of patients that have consulted from a distance with the author of the letter, to help direct treatment. If you read the letter you can readily see that he firmly believes that the only effective way to treat hypothyroidism is clinically, by adequately adjusting FT3 and FT4. Maybe seeing this in a doctor's letter could have a beneficial effect on your new doctor. Along with this I think you should discuss your intent to be treated clinically in this manner and see if the doctor has any problem with that.
http://hormonerestoration.com/files/ThyroidPMD.pdf
One other thing to keep in mind is that in spite of all the credibility given to thyroid test results, and reference ranges, there are studies that clearly show that the test variability (for many reasons) is so great that you cannot, with any statistical validity, use thyroid test results alone to distinguish a hypo patient from a euthyroid patient. And I can provide links to this data.
Hope I'm not giving you more of all this than you really want. LOL I just wanted you to be best prepared for the appointment.
Best to you.
Hi
Thank you for your answer.
I felt like death yesterday and discussed the issue with my husband and decided to go and get a second opinion. I have already made an appointment with another dr for later today and I will see what happens from there.
My thyroid was removed in 1993 due to extreme hyperthyroidism and since then I have been on Eltroxin which was changed to Diotroxin 4 years ago and all they have ever tested is the TSH, T4 levels. But they have always been in normal ranges.
I think I will ask the dr for copies of all the previous bloodworks and take that with me when I go see the other dr this afternoon.
Thanks a million for your input.
Regards
The first and most important thing you need to do is find a good thyroid doctor. That does not mean it has to be an Endo. In my opinion a good thyroid doctor will treat you clinically by testing and adjusting levels of the biologically active thyroid hormones, free T3 and free T4 (not total T3 and total T4), with meds as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief is all important, not test results.
FT3 and FT4 tests results are best used as markers to measure your increased levels as you progress toward symptom relief. FT3 is actually the most important because it has been shown to correlate best with hypo symptoms, while TSH and FT4 did not correlate very well at all.
I am concerned with your current doctor. Even though he is not deterred by your low TSH levels while you are taking significant dosage of thyroid meds, doubling your meds all at once could very well cause an adverse reaction to such a big change. You should never increase by that amount. Also, he is increasing your T3 meds without any apparent testing for T3????? Not recommended.
Not sure what doctor options are available to you, but you need to find a good thyroid doctor that will treat you clinically, for symptoms, as I described above. I think you should also not increase your meds by any more than 25 mcg of T4 and 2.5 mcg of T3. Then monitor results for about 4 weeks and then you can increase again if all is okay.
Best to you.