Did you get the scary diagnosis of having an enlarged thyroid (goiter). Do you have any problems or symptoms? What are the best treatments?
“Why did my thyroid start going crazy?!!” My first answer to that question is ‘Are you having any symptoms?’. Do you have a hard time swallowing or has your voice changed? Do you have sleep apnea? What medications are you taking? What kind of environment do you work in? Where do you spend most of your time, in general, and where do you spend most of your free time.
All of these questions (and many more) are very important in figuring out what happened with your thyroid. Depending on how big it has gotten and also depending on how long it has been enlarged…you may be having difficulties keeping your lab work stable. My labs were all over the place every time I went back for more blood work (every 6-8 weeks). One time I was put on .075mcg and took it every day and when I went back they put me on .100mcg then the next time I went down to .5 mcg. I didn’t understand until recently what had been going on.
When your thyroid is enlarged and your body is still attacking it, you will get what’s called a “dump” of thyroid hormone into your bloodstream. This increases the levels in your blood for a short time and then levels back out to normal. You can’t necessarily predict when these dumps will happen so you can’t time your lab tests to your normal period. You need to find a doctor that understands what dumps do. I didn’t find one for over 10 years so I tried to self medicate (very NOT smart) by taking my pill for 3 or 4 days and then skipping a day or 2. That didn’t help when the dumps came though. There’s just no predicting it…unless you get a major trauma to your neck…then, you can be assured you will get a dump. Another thing that causes the dumps are stress. Stress actually causes your Hashimoto’s to flare worse, which means your immune system attacks your thyroid worse. You get all your typical symptoms worse. Which means if you ache all over, it’ll be worse. If you have painful joints, it will be worse, whatever your particular set of symptoms are…they will be worse.
What Can I Do
If you’re thyroid isn’t too enlarged and it isn’t causing you any symptoms then the best approach is the wait and see while we work on our body approach. It’s also just fine and probably a good idea to get an ultrasound done, just in case, so you will have a record of any increase/decrease in size or if there are any nodules present that you might want to keep an eye on. Nodules are present in almost every thyroid by the time we are 60 so don’t stress about it if you have 1 or 5. Most people will have 1 by the time they are 35-40 and if your thyroid is enlarged you will likely have more than 1. You can focus on finding out what sent your immune system crazy and fix it. I have several options for what the cause may be in this article. I would get an ultrasound again in 6 months and if there is no change wait 6 months to a year before the next one. If you can calm your immune system down and get your body back to normal you may have found a way to reduce the thyroid gland size or at least reduce any more complications from it. Make sure you tell your doctor if you ever had any lasting infections like EBV (Epstein-Barr Virus) or Herpes II. If you clear up the EBV (or others) and/or suppress the Herpes, it will help your immune system greatly.
If your thyroid is already causing problems or symptoms, if you have a suspicious nodule, or if you’re Dr thinks you may Hashimoto’s or Graves’ disease they will ask for a biopsy after they give you an ultrasound. The sting of the lidocaine hurts worse than the biopsy procedure. A biopsy proves if you have Hashimoto’s or not and also confirms cancer or benign nodule status if any are shown on your ultrasound. You want this!! I will go ahead and warn you so you can get over it…they usually do 4-6 needles per nodule that is over 1.5cm in size or any size nodule that has cancerous characteristics. You also want this!! I was stuck about 43 times for all of my biopsies on 2 different days. It really isn’t that bad and only takes about 20 minutes, once the procedure begins. My hospital requested someone there to drive me home even though I wasn’t given anything except the lidocaine under the skin. I got to watch the ultrasound screen while they did the procedure, I thought it was neat and I really liked that I could see and be sure they were going into the nodule(s) and getting the right samples. You do feel pressure and at one point I think they went close to a nerve or some not-so-numb part of my neck so I felt a little burning kind of pain, it wasn’t too bad, just caught me off guard. Don’t take ibuprofen, Tylenol or aspirin before you go, it’ll make you bleed longer. You can only take Tylenol after the procedure, not ibuprofen or aspirin…for the same reason.
Your next steps if you have had an ultrasound and biopsy is to wait a few days to a week for the results. I personally don’t mind them taking their time and getting me the right information instead of rushing through for my peace of mind. Just do some research or reading up on the possibilities if you need to but think positively about your results, no matter what they are. 95% of thyroid cancers are HIGHLY survivable. They are considered some of the “better cancers to have”, if there is such a thing. Also, just for your information, the cells in a Hashimoto’s thyroid look like Hurthle cells which resemble Hurthle cell cancer. Hashimoto’s is not a cancer but the cells greatly resemble each other. Something to keep your eye on for the future. Some labs are not familiar with Hashimoto’s Hurthle cells so if it says Hurthle cells present on your biopsy report, don’t freak. Your doctor should already have, or will, run antibody tests to find out if you could have Hashimoto’s disease.
How To Fix It Before Surgery
One thing I will say about your medicine for hypothyroidism, if you don’t take it properly, you aren’t doing yourself ANY favors. You won’t absorb the whole level of T4, T3, or T4/T3 combo that you are supposed to absorb. If you don’t absorb it then your levels won’t be right. And if your levels aren’t right then you still feel bad or you will start to feel worse.
No matter what time you work or what time you wake up in your day, always take your medicine at least 1 hour before you eat anything or have your first cup of coffee and at least 4 hours after you have eaten anything. You have to drink about 300ml of only water. I’m a huge barely-sweetened-iced tea drinker and I don’t like to drink plain water unless I’ve been running or really sweating outside, but this is a serious key. Tea, coffee and soda breaks down or affects the way our bodies absorb the thyroid hormone that we need-which again, means you won’t get your levels right. I usually set my alarm for 4am, I have a bottle of water on my bedside table and I take my medicine and roll over and go back to sleep until 5 when my coffee pot goes off!! It made me not able to go back to sleep the first few times I took it this way but that might be just because it was something new, or I was scared I wouldn’t wake up with the next alarm. I started to just take my medicine at 3:30 because I almost always wake up at that time now to go to the bathroom. I take my medicine and crawl right back in bed until the coffee wakes me 🙂 I set my alarm now for 3:30 instead of 4 because another thing you should do is take your medicine at the exact same time every day.
The next crucial part is that you can’t take any other vitamins or supplements for at least 4 hours after you’ve taken your thyroid hormone. If you do, it could mess with the conversion rate of T4 to the active form T3 that we need. I try to take my vitamins by 8-830 am and then I take my D3/K2 combo at dinner.
If You Do Have To Have Surgery
Please check and research and double check who you are referred to. It’s best if he/she is an Ear, Nose & Throat surgeon. If you can’t find anything online about them, call the hospital and ask to speak to an RN in Surgery dept. Let him/her know you are trying to find out who the hospital staff would have to their thyroid surgery. If the RN you’re talking to is new and doesn’t give you any info, call back the next day at an earlier time. RN’s do not mind you asking and they have no problems telling you who is ranked #1-3. If there is something particular about you and your surgery let the RN know about that and see if he/she has a different opinion of who he/she would recommend. Don’t be shy about asking questions when you finally see your surgeon. You are going to have to live with whatever repercussion come from it (like damaged vocal cords, low calcium for the rest of your life). Your surgeon needs to have done at least 2 Thyroid surgeries per week. If he says he averages 1 per week but you feel comfortable with his knowledge and ability, that’s fine too. I wouldn’t be comfortable with anything less than that. Even if you have to drive 45 mins or more to the next good hospital, do it. My Dr was well-known and admired around here and did 2-4 in a given week and my vocal cords were still mildly damaged. It’s just the way it works sometimes. I only had 1 tone of voice or else it was a light whisper. If I tried to yell, my voice just quit. Now it’s 6 months after surgery I can talk in a few more octaves but it’s still a little waffley on the getting loud part (which my kids love!!) My parathyroid glands worked better after the surgery than they did before the surgery and while the surgeon was in there he saw a suspicious lymph node. He removed it and sent it off for biopsy with my whole thyroid gland too. All was fine but my point in saying that is, you need to be confident that your surgeon will be able to deal with any surprises once he opens you up. Ask him directly what problems he may be anticipating with your surgery after he sees the CT/MRI.
You will go have a CT or MRI of your head and neck area so he can get a full image of where your thyroid lays at inside the thyroid bed in your neck. If there’s any overgrowth extending down into your chest or back behind your throat. He needs to see if you have compression on your trachea. When you first go see the surgeon he will most likely send a little camera down your nose (after he numbs you), it does not hurt at all and it only takes about 2 minutes total. Simple. He will make you say Eeee, or aaaaahh or something so he can see your vocal cords and he’ll make a note of what he sees in your chart for reference later if needed. This is when you can ask him what he might be anticipating with your surgery. If you don’t like his answer…find another Dr. Be sure to have it on record that you want another opinion or a referral to see a new surgeon. This is a MAJOR surgery. You’re entire body functions off of your thyroid and parathyroid hormones and any surgery is a big deal. This isn’t like someone bandaging your knee or a routine birth. Plenty can do that. There are nerves in your neck that can paralyze your face and other things like your throat. If you can’t swallow, you will live on tube feeding. So don’t feel bad or shy about asking questions.
Once I had my surgery, I felt like a million bucks!! Well, I did after the 3 or 4 days of pain went away. Most people I talked to said they never took any pain medicine and the few who did said it only lasted a day or 2. I guess because of how huge my thyroid was, mine was more invasive and traumatic so I hurt quite a bit for a couple days. I expected it to hurt longer, honestly. Do not try to drive for several weeks. You just don’t know how much you use your neck in driving until you just can’t!! Try to stay home period, the seat belt comes right across your neck too. My incision was approx 4 inches in length and curved up on one side. I told my surgeon I didn’t care about the scar, I would be happy to have it all removed without additional scars down the sides of my neck like 2 hockey sticks facing each other. You should discuss the incision you will get with your surgeon too.
If you have a hemi-lobectomy or a partial thyroidectomy or like me, a total thyroidectomy, your body will be in a shock and it does take a few months for everything to level out. I was on top of the world after the first week post surgery and it lasted for 3 weeks. Then I just crashed. I couldn’t get out of bed again and I hurt all over. My incision wasn’t healing well and everything got bad again. It took me several weeks to feel even OK again and even though I still have aches and pains here and there, my energy level is higher now than it has been in the last several years. I’m still learning and fixing myself but the best thing for me was having my surgery. I wouldn’t go back now at all!! My thyroid levels have leveled out and I have maintained 1 dose of 200mcg since shortly after the surgery. I don’t have heart palpitations anymore due to the “dumps”, I don’t feel like the only thing I will accomplish in any given day is breathing and keeping my bed warm. Surgery can be a great thing. If you CAN fix it before it gets to that point, I definitely would. If I had known why my levels couldn’t get stable, maybe I would still have my thyroid and getting all the thyroid hormones I should be getting.
Let me know if you have any questions or leave a comment and feel free to share a little about your story here too. Share this article with someone who may need this information.