Symptoms after stabilised

[Hypervan]

Hi Everyone, I was diagnosed with and treated for hyperthyroidism the last couple of months. The last phone call from the physician simply said he is happy that my levels have stabilised, so no more treatment and re-test end of October. My question is, how long does it take for symptoms to go away after your levels have stabilised? Some symptoms are gone, but others (like heat intolerance and tremors) are still very present. The doc is not at all informative and I'll definitely get a different one next time around. Thanks.

[Barb135]

Hi, Hypervan... I'm sorry I didn't see your latest posts...

Yes, your TSH is still very low, and under normal circumstances, that wouldn't be a big deal, since TSH is only a messenger from the pituitary to the thyroid to produce more hormones.  Right now, that indicates that the pituitary is not stimulating the thyroid, which is most likely why your FT4 dropped so much. You may have a pituitary issue instead of a thyroid issue.  If TSH goes higher, your thyroid would begin to produce more, but as long as it stays very low, your thyroid may be unproductive, which is just as bad as over productive.

The scintigram is not the same thing as an ultrasound.  The scintigram measures uptake of the chemical Pertechnetate, which is often used in place of I-131.  It does indicate hyper, as with Graves, but that's not conclusive, without the antibody tests.  You could still have been going through a hyper phase of Hashimoto's and are now about to enter a hypo phase.

Unfortunately, the scintigram doesn't show whether or not you have nodules on your thyroid, as an ultrasound would show.

I do think it's time for a new doctor.  It is concerning that your doctor didn't give you all the information from the tests that were run.  

Most likely he didn't do the antibody tests, because they uptake test indicated hyper as associated with Graves, so he diagnosed Graves and left it at that, but neglected to tell you.  

If you do have Graves Disease, it rarely goes into remission on its own.  

I would not recommend trying to get pregnant until the thyroid issue is resolved, since your thyroid hormones are so important to, both, you and a fetus.

[Hypervan]

Thanks for getting back to me, I really appreciate your input! I am currently waiting for an appointment with an endocrinologist, I'm sure he'll be able to help me better than the physician.

I don't understand why he took me off the meds while my TSH was still so low, but he didn't do an antibody test to confirm Graves. It has still only been speculated.

At the moment I actually feel like I'm going more hyper again.
Thanks for the info; I will post an updated answer when I have been  to the endo (hopefully soon).

[Hypervan]

Hi Barb135

I finally got my results today and even though my Free T4 levels improved my TSH is still way below normal range. Here are all my reslults:

Bloodtests

11/06/2016 (different lab)
TSH             <0.01   ?REFERENCE RANGE?
FREE T4     38.0     ? - 16.4

25/07/2016
TSH             <0.02  0.35 - 4.20
FREE T4     27.2     10 - 20

29/08/2016
TSH             <0.02  0.35 - 4.20
FREE T4      16.4   10 - 20

THYROID SCINTIGRAM
Pertechnetate take 5.4% (normal 0.75 - 4%)
Diffuse enlargement, as associated with Graves.


At the moment I am just really mad that the doctor knew about the enlargement and Graves possibility and 1. Didn't even tell me and 2. Didn't test for it.

Definitely a new doctor now but I am unsure of the road ahead and the time involved, I guess that depends on the outcome of a Graves (antibody) test?

[Barb135]

I'll look forward to seeing the results of your tests, including the ultrasound, if you have that.  Then I'll be able to help you further.

[Hypervan]

Sorry I see it was not an ultrasound but a scintigram measuring uptake of pertechnatate. Oh and the Diffuse enlargement is a Smooth Diffuse enlargement.

[Hypervan]

Any advice when looking at my results?

[Hypervan]

I did not have the antibodies test but I did have the ultrasound. Doc was really useless in giving results of all the tests.
Yeah I know it is dangerous to get pregnant when hyper, which is part of why it is important for me to sort it out ASAP but the doc didn't really seem to care he just said "just wait".
I will get a copy of the blood test in the week ahead and will post my results then. Thanks a lot for your willingness to help. This is super confusing being told I'm stabilised but still having symptoms.

[Barb135]

Were you tested for antibodies to determine a cause for the hyperthyroidism?
The most common cause of hyperthyroidism is Graves Disease, but it's uncommon for some with Hashimoto's.  Hashimoto's is associated with hypothyroidism, but quite often, one can start out with hyperthyroidism, which often alternates with hypo and/or normal before settling into permanent hypo.  

Each of these conditions produces specific antibodies.  To test for Hashimoto's, you would need Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb).  You need them both, because some of us have one or the other and some have them both.  

The definitive test for Graves Disease is Thyroid Stimulating Immunoglobulin (TSI).  

You should also have a thyroid ultrasound to check for thyroid nodules.  Sometimes nodules on the thyroid can produce hormone separately of the thyroid.  This can also be intermittent.  

It's good that you mentioned the menstrual cycle (it's not too blunt) and wanting to start a family, because thyroid hormones, can definitely affect it.  You should not try to get pregnant until you're sure that your thyroid hormones are adequate and stable, because adequate thyroid hormones are essential for the proper growth and development of a fetus.  Once you conceive, your fetus will depend on your thyroid hormones until its own thyroid develops enough to produce its own thyroid hormones.  

As long as you are having symptoms of being hyper, your hormone levels are probably not where they should be.  

Do you have a copy of the blood test from when the doctor said your levels were stabilized?  If so, it would be good if you could post them here for us to see and we'd be able to help you better.  Be sure to post reference ranges from the lab report, as well, since ranges vary from lab to lab and have to come from your own report.

If your doctor did not provide a copy of the report, he's required to, upon request, if you are in the U.S.  It's always a good idea to keep copies of lab reports for your records.  I have all of mine dating back to the year 2000, so I can compare now to then.  Once I learned what to look for, I can see a lot of things that were missed back then.

[Hypervan]

And yes we have already decided that if it is not stabilised as he said and we have to continue treatment we will find a different physician.

[Hypervan]

Thanks a lot for your response. I was on Neo-Mercazole. We're not really happy about the doc, he's been very nonchalant about my condition from the start, saying it is not too serious. Did two rounds of Neo-Mercazole and then he said it's stabilised. Symptoms that are still present are hand tremors, heat intolerance and very light menstrual period  (sorry for the bluntness but this one is a big one for me as we would like to start a family). I don't know if I should wait 4 weeks and if the symptoms are still not gone test again or if I should wait the prescribed 8 weeks before testing again.

[Barb135]

Hi there... What medication were you on?  Typically, when one goes off medication, the hyperthyroidism would come back, unless some other steps were taken to prevent it.

What symptoms do you still have?  Just because your hormone levels might be in a normal range, doesn't mean it's good for you.  It sounds like your doctor may have taken you off the medication too soon.

You might want to think about getting a second opinion.