Hypothyroidism Support Group
Hypothyroidism is the disease state caused by insufficient production of thyrohormone by the thyroid gland. There are several distinct causes for chronic hypothyroidism, the most common being Hashimoto's thyroiditis and hypothyroidism following radioiodine therapy for hyperthyroidism. Advanced hypothyroidism may cause severe complications, the most serious one of which is...
Hi,
I am new to this group. I have had a thyroid nodule for a long time that was always tested benign on needle biopsy etc. But, since I also have ulcerative colitis and my then gastroenterologist was recommending Remicade (which still seems like a viable option given my GI disease), I had to undergo a bunch of tests, including a chest x-ray that revealed the nodule to her. It was quite big, and was deviating my trachea. My GI doc would not approve Remicade until it was totally ruled out as cancer, which three negative (well, one inconclusive) needle biopsies apparently did not do. My thyroid tests always showed I was euthyroid.
After a lot of fussing and contemplating, I finally had a hemithyroidectomy on February 19. The surgery went really well. I had no complications. The surgeon told me afterwards that he had taken a bit more than he expected (more of my left side) and I MAY have to take thyroid hormones. The pathology was negative for any cancer at all.
That was exactly 4 weeks ago tomorrow. Yesterday and today I have (rather suddenly) felt very tired and listless, to the point I could not get up and face my 45 minute commute and challenging job. I also have a mild headache. I feel really guilty for not getting up and going to work.
But I did go and get tested based on the requisition my surgeon gave me a week after the surgery. I have an appointment with my GP tomorrow. My test showed TSH at 16.2 (normal 0.27 to 4.2 mU/L; and T4 free at 10.6 (normal 10.5 to 20.00).
I have read much about hemithyroidectomy that suggests the thyroid will recover and grow to make up the difference. My BIG question is whether, if I take thyroxine at this point, my remaining thyroid will not pick up the slack. Does anyone know? I am a 59 year old female.
Thank you so much.
Tekla
I am new to this group. I have had a thyroid nodule for a long time that was always tested benign on needle biopsy etc. But, since I also have ulcerative colitis and my then gastroenterologist was recommending Remicade (which still seems like a viable option given my GI disease), I had to undergo a bunch of tests, including a chest x-ray that revealed the nodule to her. It was quite big, and was deviating my trachea. My GI doc would not approve Remicade until it was totally ruled out as cancer, which three negative (well, one inconclusive) needle biopsies apparently did not do. My thyroid tests always showed I was euthyroid.
After a lot of fussing and contemplating, I finally had a hemithyroidectomy on February 19. The surgery went really well. I had no complications. The surgeon told me afterwards that he had taken a bit more than he expected (more of my left side) and I MAY have to take thyroid hormones. The pathology was negative for any cancer at all.
That was exactly 4 weeks ago tomorrow. Yesterday and today I have (rather suddenly) felt very tired and listless, to the point I could not get up and face my 45 minute commute and challenging job. I also have a mild headache. I feel really guilty for not getting up and going to work.
But I did go and get tested based on the requisition my surgeon gave me a week after the surgery. I have an appointment with my GP tomorrow. My test showed TSH at 16.2 (normal 0.27 to 4.2 mU/L; and T4 free at 10.6 (normal 10.5 to 20.00).
I have read much about hemithyroidectomy that suggests the thyroid will recover and grow to make up the difference. My BIG question is whether, if I take thyroxine at this point, my remaining thyroid will not pick up the slack. Does anyone know? I am a 59 year old female.
Thank you so much.
Tekla
Alot of doctors - especially those who take out 1/2 of a thyroid - HOPE that the other 1/2 will compensate. That is rarely the case. Thyroid tissue doesn't normally regenerate to the level that it will compensate for the missing tissue. It doesn't simply "grow back" as it was before. SOME tissue may come back, but rarely (and I mean extremely rarely) does it "come back" enough to provide adequate hormones. Does it happen? Yes, but in very rare cases and with only certain types of goiters (hyper involutions and adenomas in HYPER thyroid patients ONLY). If you were hypothyroid because of Hashimoto's you will have very little tissue regenerate if any at all. And, most patients with Hashimoto's (the most common form of hypothyroidism that causes goiters) will actually produce less hormone in the tissue that remains post surgery. So, I wouldn't count on "regeneration".
Since you had a goiter, I'm curious to know what your "euthyroid" labs actually looked like. The TSH test can often look "normal" in patients with goiters, eventhough they have very little actual thyroid hormones (Free t4, Free T3) which makes them hypothyroid. Many times, adding thyroid hormones can "shrink" a goiter. In my case, that's exactly what happened and I escaped surgery. If you have those labs it might tell us if you were hypothyroid prior to surgery. I'm not calling your decision to have surgery into doubt at all, but it might tell us what was really going on with you. Did they tell you that you were HYPO? If not, those labs would help us find out. But, that's up to you as to whether or not you want to share that info.
Your goiter was interfering with your trachea - and I would have consented to surgery as well in that case. I'm sorry you went through all of this, but I'm glad the surgery went well. I'm also sorry you've been added to our club (hypothyroidism), but I'm glad you found us because we can help!
Now, on to your questions:
Your TSH is WAY too high. Anything over 1 is indicative of hypothyroidism (you will never get most doctors to admit this but it's true none-the less). That means you're hypo like a rock-star.
The other thing - and the most important test for hypothyroidism (not TSH) is your Free T4. Its at the absolute rock bottom of the range, which means, again, you are absolutely severely hypothyroid. And you need medication NOW.
Most people feel well when they have a TSH of less than 1, and a Free T4 level in the upper portion of the range. You're no where near that. You're at 1.05% of the range - where as a healthy person needs to be at AT LEAST 75% of the range to be able to function. You, my dear, are severely hypothyroid. So, get on those meds pronto, and don't worry about "regeneration" that's never going to happen anyway - at least not to the level that it will provide you with enough thyroid hormones to function.
Now, will medication inhibit the "growth' of new tissue - no. There's no proof that this will happen, and besides, what are you doing to do in the meantime? Sit around and wait for tissue that can take years to grow if it ever shows up at all? Nope. You need help NOW because you have a life. :)
Let us know how it goes, and update us with your next set of labs post meds and we can guide you on getting to "optimal" (no symptoms). It can be done...and you're on your way.
PS - Here's a wordy techy document about "regeneration" and a "personal account" of someone who's gone down this road before you:
Techy wordy document:
Excerpt:"The patients with Stroma Lympatosa (hashimotos disease) not only failed to show regeneration (post operation) but actually showed a tendency to store less iodine (indication of thyroid function) as they were followed."
In other words: It's extremely unusual for hypothyroid patients (Hashimoto's) to "regenerate" any tissue whatsoever, and they can often have tissue that continues to die because it is an auto-immune disease - so overall thyroid function decreases post operation.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1802984/pdf/annsurg01433-0017.pdf
First person account:
BTW - I'm not advocating for Armour only. Some people do just fine on synthroid alone. Some do not. Whether or not you want to start out on synthroid or armour is a personal decision. Either way, it's better than where you are now:
http://www.stopthethyroidmadness.com/stories-of-others/nancys-story/
I hope that helps! Keep us posted.
Thank you so much for the kind effort you putting into replying to me the other night. I was quite scared, and feeling really awful and you helped a lot.
I saw my GP (oddly enough, when I was in the office my husband called and said my surgeon had called and said I needed medication and he would phone it in). I told my GP how awful I was feeling. She prescribed 150 of levothyroxine, based on my weight (I regret I am 5'9" tall and 185 pounds). She said she would have done 100 but since I was feeling so bad she went to 150. I have an appointment with the endocrinologist on April 7 where hopefully things will be stabilized etc.
You asked about previous labs. The last I have are from September 2013. My TSH was 2.1 (0.27-4.2 mU/L) and my free T4 was 16.6 (10.5-20.0 pmol/L). I am no expert but it looks pretty normal to me despite my huge nodule (multinodular) problems.
It is nice to be breathing more freely, and my husband say I no longer snore (yah)!
Anyway, I have taken two doses of the synthyroid and I am not sure yet but I think I my head is starting to clear a bit. I am so disappointed that I will likely have to take this drug all my life, but I am also grateful that I am feeling better.
I have taken 4 days vacation off work to hopefully get back on track. Trying to concentrate was quite the challenge!
Thanks again.
Tekla
Those labs are too old to be able to tell what's going on with you now, but no doubt, you need meds.
Sometimes doctors rx by weight. Just be aware that if you are "sensitive" you may experience some unkind symptoms on that high of a dosage. If you're not the sensitive type you maybe can get away with it. The "normal" staring dosage is around 25-50 mcg. So, if you have issues, please post back, K?
"The last I have are from September 2013. My TSH was 2.1 (0.27-4.2 mU/L) and my free T4 was 16.6 (10.5-20.0 pmol/L). I am no expert but it looks pretty normal to me despite my huge nodule (multinodular) problems. "
Your TSH is elevated. But the range most docs use is waaay wider than what we consider "suspicious". Anything over 1 is suspicious. Yours is 2.1.
Your Free T4 should be in the upper portion of the range (75-100% of range). Your is 64% of the range. And, any doc looking at that wouldn't give you medication.
The problem with nodules is that sometimes they can be "euthyroid" - meaning your levels may be bouncing up and down or remain perfectly stable, but if the nodule is interfering with your breathing...it has to come out. So, you made the right decision.
Be kind to yourself during this time, and remember that it takes time to "balance" thyroid meds. So, if this isn't the "one shot deal" you pray for, please post back. Thanks! And, good luck!