I had a left thyroid lobectomy three weeks ago. (Benign non-toxic goiter 4cm with normal TSH, T3 and T4 ). One week after my surgery, I began feeling very sick. I was in a fog, depressed, sweating, and very anxious. My surgeon thought I might be low in calcium. But, when I had bloodwork done, all my levels were fine except my TSH shot up to 5.5 from .9 pre surgery. I was told to take 50 mg of generic Synthroid and follow-up with him in 6 months. I have opted to start Armour Thyroid instead. I was repeatedly told by my surgeon that 80% of people can function with only one thyroid lobe without any meds.I was also told by his nurse that if I became hyothyroid, it wouldnt be for at least 6 months. Will the other half of my thyroid eventually start to work better? I have been struggling with all of the physical symptoms since surgery. I feel like I am holding on to a tiny piece of thread. There is no doubt that I am done with my surgeon! I feel abandoned and lied to. I should have done more research before having this surgery. I saw a top endocrynologist at the Cleveland Clinic, whom I got a second opinion from before surgery, and was told to call him if I ever needed anything. Needless to say, after two weeks and four messages, he has never returned my call. The health care in this country is truly second rate. Please emal me ***@**** because I dont know how much longer I can endure this.
What symptoms are you having? A TSH of 5.5 is higher than normal, but TSH is a pituitary hormone, and is not indicative of actual thyroid status. .
Have you had Free T3 and Free T4 tested? Those are the actual usable thyroid hormones and are much more important than TSH. If you have current levels, please post them. Be sure to include reference ranges, since these vary lab to lab and must come from your own report.
Even being low in the ranges, can cause symptoms, even though most doctors will tell you everything is fine.
FYI - e-mail addresses get bleeped out, because it isn't necessarily safe to give out a personal e-mail address on a website such as this. While I trust all of our members, here, we don't know who else might be checking out the forum. You can communicate with people via Personal Message (PM), if you like.
Thanks Barb. I was wondering why me email didn't post. My surgeon was only concerned with my TSH. Not sure what the other levels are. One week after surgery, I plummeted into hypo hell. I had tingling in my hands and feet, high then low blood pressure, sweating profusely, a disconnected or foggy feeling, mild depression and not able to think clearly. I am seeing a new doctor on Tuesday and hopefully he will be able to get all of this leveld out. I feel like my surgeon just washed his hands of me. Im hoping that the right half of my thyroid will be able to function normally and produce enough hormones to compensate for the left side. But as of today, I can tell it hasn't been able to yet.
I'm not sure of statistics, but it seems that once a lobe is removed, the other sometimes can't keep up.
Many doctors are only interested in TSH, which is just plain silly, because as has been explained, both here, and in your other thread, TSH is a pituitary hormone and is so variable, it simply can't be used to determine thyroid function.
When you see the new doctor on Tues, be sure to specify he FT3 and FT4 tests, and get them every time you test, since they are the important hormones to monitor.
Do you know if you have Hashimoto's Thyroiditis? Or do you have Graves Disease?
Neither. I had a non-toxic, benign goiter on my left thyroid. Other than the size (4cm) everything was perfectly normal. I had a functioning thyroid despite half of the left one having dead tissue. But I still had maybe 1cm or so of normal, healthy tissue on the left and a healthy, normal functioning right one.
We have one thyroid, with 2 lobes (left and right) and an isthmus (center). A goiter is a swollen thyroid, so was the problem because of the left lobe being enlarged or did you have a nontoxic nodule that was 4 cm? I'm only asking because I'm curious about removing 1/2 of your thyroid. I wonder why they removed it because of dead tissue; was there something suspicious?
I had a non-toxic nodule on the left lobe that had almost tripled in size since 2007. It was benign. My surgeon suggested removing it because if it kept growing, which he suspected it would do, it would eventually compress my airway. The nodule basically took over the left lobe, yet my thyroid function was completely normal. I had maybe 1 cm of healthy tissue left.
Okay, that makes sense. I agree with the surgeon that if the nodule had tripled in 5 yrs, it would continue to grow, and best to get it out.
Where he went wrong, was "assuming" that 50 mcg was going to be a good dose for you, AND in waiting 6 months to retest. He should have started you at about 25 mcg, retested in 5-6 weeks and adjusted medication as needed, based on FT3 and FT4, along with your symptoms. He should have continued testing approximately every 6 weeks, until your levels stabilized and your symptoms were gone.
I'm happy to hear you are done with him, because doctors like that almost invariably keep their patients, ill. Can you just call and make an appointment with the endo in Cleveland, rather than waiting for a call back? Many/most doctors won't respond to phone calls from someone who is not their patient.
I couldn't believe what my surgeon was suggesting either. I was in such a fog at the time, I just agreed to everything! I had to ask HIM if he wanted me to call in about two weeks to let him know how I was feeling. He kind of said..ummmm,yeah, go ahead and do that. And then, I did not want the Synthroid but that's the only medication they treat their patients with. And it's only the generic. It's so uncomfortable for me to call his office because his nurse is such a b, I mean, so unfriendly. So, I have just been riding the rollercoaster of hypo symptoms until Tuesday. I'm thankful the surgery went well, no cancer and the scar is healing nicely. But after that...
I am a vegeterian and had to do a major overhaul of my diet bc half of what I eat makes hypothyroidism worse. I love kale and broccoli and dark green lettuce, like arugula. I have a powder I was using that has kale, broccoli, wheatgrass, barley grass, some spirulina which I stopped using bc I don't want my numbers to spike until I get on the right meds. It's been challenging.
I will make an appt to see the endo at the Clinic. He actually listened to ME and didn't throw numbers or variables at me. He's so hard to get an appt with I thought it would be easier to call him directly. So, I will be starting on Tuesday with a new family dr who can help me get a grip on all of this. I made sure he treated with Armour and he does. I also made sure my local CVS carries it, and it does.
I honestly sometimes feel like I am 80 living in a 40 year old body! But at the end of the day, it's all good!
You are VERY knowledgeable about thyroid issues! I feel 100xs better about everything since I found this site. So many words of encouragement!
I honestly never thought my surgeon would be so nonchalant about this. Hes the nicest guy and seemed very informed about thyroid issues. He's a general surgeon but he did a fellowship in endocrine disorders so I trusted him wholeheartedly. But my faith in him went out the window when he prescribed the Synthroid and then told me to follow-up in six months. He couldnt provide an answer when I asked him about going hypo so soon after surgery. He prescribed the medicine and told me to relax until it kicked in.
Its good to know that I can still eat kale and broccoli. Im just concerned that if I eat too much, I will plummet deeper into hypo hell. So I guess Ill just wait until Im on the right meds. I'm hoping this dr will retest my levels, especially the free t3 and free t4.
Im not sure if Im missing something here?! Called my surgeon's office to get my free t3 and free t4 results. He didnt check the free t4 and my free t3 came back as101.1 the range being .60-1.50. The nurse said it is normal. Ummmm, to me it looks like 101.1 is out of range. Not sure what to make of it. I guess it doesnt matter bc I want the dr to run all new labs tomorrow. Wouldnt that number make me hyperthyroid?! And if I have a normal free t3, does that mean no Armour. My head is spinning.
I had half my thyroid out in 1986 and have had a perfectly functioning other half since then... my surgeon tried to prescribe drugs for me at the time of surgery and I declined. The other half kicked in and I have not had any issues. Good Luck
It's reassuring to know that my other half may still do the work for both sides! Yesterday was the first day in three weeks that I felt good and had the energy to get things done. I felt pre-surgery normal. Today, so so. Foggy today and tired. But, my new dr took blood and is checking for everything! All thyroid hormones plus all my levels. Will get the results on Thursday. Fingers crossed that my right lobe is starting to work!
Not sure what to do now. My labs came back today and my TSH is now at 4.7 from 5.5. I am only 3 weeks post op and Dr. Lupo said sometimes it takes 4-6 weeks for the remaining lobe to realize it has to produce enough hormones to compensate for the missing half. I didnt get the free t3 back yet. I dont know whether to wait 3 more weeks or start a low dose of Armour Thyroid. I have been having very mild hypo symptoms the worst being the feeling that I am in a fog. Your advice is very much appreciated!
I feel AWFUL! I am so sick of this. Why oh why did I have this surgery? I am in a constant fog. I am losing faith that the right thyroid lobe will start to work. Dont know whether to start the Armour or jump off a bridge. I am hating the world right now, especially doctors!!!!!! Still dont know what my free t3 is. My dr. said it wasnt back yet and that it was going to be normal. WTF? How will it be normal when my damn TSH is elevated. Just cant do this anymore. Tired. So very tired.
I read in the past that the minimal thyroid volume in adults should be at least 6 cu cm to produce enough hormones; if the volume of remaining lobe is less than this, the TSH will go up, causing nodules to grow in the remaining lobe.
Therefore a low replacement dose of thyroid hormone may not be a bad idea.
The 4 cm nodule is difficult to manage without surgery; even the PEI may not be effective.
Thank you for the info! This has been so frustrating. I think I'm starting the Armour Thyroid tomorrow. I'm just not used to feeling so foggy. It's not constant but it comes and goes. And it's hard to function when I feel like that. Im hanging in there as hard as it's been. :)
Hi! I was wondering how long it took for your other half to kick in and start working. It's been eight weeks since my surgery and I have been on 30 mg of Armour thyroid for 5 weeks but I still feel off. My hair has been the most affected. I'm on the boards now as Alymarie71 if you could message me at that name. Thanks!
i had a solitary nodule in the left lobe of my thyroid , my lab results are normal t3 t4 and tsh , i made an MRI and it says that it s a cold nodule the surgeon advised me to remove it or to remove the whole gland , really i m confused , i have no symptoms no problems with breathing but i m confused should i make the surgery or monitor the nodule by ultrasound every 3 months for any enlargement , plz advise me .........thxxxx
I had nodules and no function in the left half of my thyroid and it was removed. The surgeon said I had a little function left in the right side so he didn't want it removed. Is it possible that the right half kicked in and started working well enough to cover the half that's gone? I seem to still have all of the same symptoms of hypothyroidism yet every time I'm tested, they say my levels are normal!! I'm so tired of feeling miserable and the doctors treating me like I'm a hypochondriac!! My Tsh is 1.95 with the standard range of .35-4.94. My T4 free is .97 with the standard range of .7-1.48. My T3 uptake is 29 with a standard range of 24-38. They all seem on the lower ends of the "standard" and I wonder if this could be contributing to my problems. Any insight would help as I just want to be reassured I'm not crazy!!
TSH is a pituitary hormone that is only an indicator of thyroid status, to be considered along with more important indicators such as symptoms, and also levels of the biologically active thyroid hormones, Free T3 and Free T4 (not the same as Total T3 and Total T4). Further just being anywhere within the very broad reference range does not assure that all is okay for you. The ranges are far too broad to be functional across their entire breadth, for every patient. In addition, you have not been tested for Free T3, which is the thyroid test that correlates best with hypo symptoms, while Free T4 and TSH does not correlate at all.
Whenever I see that a patient has been tested for T3 uptake, I immediately assume that the doctor has been around for a long time and has not recognized that test is outdated and not very useful. You should always make sure they test for Free T3 and Free T4 each time you go in for tests. In addition, since hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin, you should get those done also. When you have those results, please post, along with ranges, and members will be glad to help interpret and advise further.
A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with after initial tests and evaluation. The letter is then sent to the participating doctor of the patient to help guide treatment. In the letter, please note the statement, "the ultimate
criterion for dose adjustment must always be the clinical response of the patient."
When you go back for those additional tests, you should discuss this with your doctor and ask if he is going to be willing to treat clinically, as described in the link. If not, then you will need to find a good thyroid doctor that will do so.
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