Dx w/ Graves Disease 18 Months ago and now dealing with other issues

[GMEN1984]

Hello Everyone,

About 18 months ago, I was diagnosed with Graves. I had gone to the doctor because my entire body was aching, my muscle tone was going away, and it felt like my entire body  was mildly vibrating as if someone just shot me up with epinephrine.

Doctor had me do blood work the same day. My blood work came back with a low tsh, but high t3/t4 and he gave me a referral to see an Endocrinologist

The endo did a quick physical exam and then did an Ultrasound. He wasnt specific about my nodules but felt one was a little suspicious. He sent me to go do more blood work, a nuclear scan, and a biopsy. The blood work consisted of several antibody and immunoglobulin type tests. I did my blood work first and they came back positive for graves, but the nuclear scan and biopsy was still needed. I went ahead with the biopsy (of just one nodule) and it came back as benign. A couple weeks later, I took the nuclear scan tests and my uptake came back high for both time periods (6 and 24 hour marks). The exact term used by the person who performed the test was as follows:

'Increased radioiodine uptake compatible with Graves' disease. Correlate with lab values."

So I returned to see my endo and he confirmed that I had Graves. Over the next year, I was talking Methimazole to stop the production of thyroid hormones. The meds were not working at first, so we gradually increased dosage and as of November 2016; by blood work came back normal. It was still high, but back in the normal ranges. My TSH was still undetectable however.

So after my blood work returned to normal, my doctor prescribed a lower dosage (5mg), to get me into remission. I was suppose to return after 2 months, but I couldnt. Despite not seeing him, I kept taking the Methimazole. 4 months go by (around the end of march) and suddenly my symptoms return, but this time; they were worse and my voice started to change. I also started to have a sore throat, so I stopped taking the meds and called my Endo. He wasnt please with me that I didnt come see home sooner but sent me a work order to do more blood work.

On April 3rd, I went and had some blood drawn. A few days later, my thyroid blood work came back abnormal. This time, they were higher than they were before. The results are as follows

T3, Total Range = 87 - 190 ng/dL. Results = 281 ng/dL
Free Thyroxine  Range =  0.60 - 1.80 ng/dL. Results = 2.63 ng/dL
TSH was <0.01 uIU/mL (undetectable)

My WBC was normal.

So he then prescribed me 20mg and told me to return in a month. I went on the meds for a month and since ran out. I havent been on the meds for 8 days now and still have a sore throat. Its specifically on one side. I dont know if the meds have been causing it, or if its something else. My voice is beginning to be a bit hoarsed as well. Its a little noticeable as well. I scheduled an appointment with my endo, but he doesnt have an opening until June 16th.

With the fact that my throat has been sore, for almost 2 months now, and has only gotten worse (slowly but surely), is there a reason for this? My WBC came back normal, so Im not sure if its the meds that are causing it.

Other symptoms Ive had is pain in the side of my neck, back of neck, and under my collar bone. Ive also had no fever, no coughing, no runny nose; which is something my endo told me to look out for while taking my meds.

Has anyone else experienced this?

[Barb135]

It's possible the nodule has grown (they can do that, even if benign) and is putting pressure on your neck.  It's also possible that inflammation is causing your neck to be sore and the voice changes, even though your WBC is normal.  My WBC is almost always normal, but inflammation markers, such as CRP are often higher than normal.

It's also possible that the 20 mg methimazole was too much and caused you to go hypo, since hoarseness is a common symptom of hypothyroidism.

You can try changing your diet and eliminate inflammation causing foods, such as sugar, yeast, white flour, etc and see if that helps.  It helps me, to a certain extent...

You can talk to your doctor and see if it's safe to try OTC anti-inflammatory med, such as Ibuprophen or Tylenol.  That's what I did when my thyroid was inflamed.  I also found that laying a lightweight cool damp cloth across my neck helped soothe the pain.

If your thyroid is producing excess hormones, you can try eating more goitrogenic foods, such as broccoli, cauliflower, cabbage, Brussels sprouts, broccolini, mustard greens, kale, turnips, and collards, strawberries, etc.  Some say these will inhibit thyroid hormone production or absorption; others say it won't or the effect is minimal.  At any rate, they're all good for you and very anti-inflammatory... It should be noted that cooking destroys the goitrogenic properties, so they should be eaten raw if attempting to discourage thyroid hormone production.

Did your doctor only give you a 30 day supply of the methimazole?  Typically, they allow refills of prescriptions, so you should be able to get more when you run out. It should say on the bottle if you have refills. If not, you should call the doctor and explain what's happening and that you were unable to get an appointment within the month the doctor wanted to see you and tell them you need more medication, as I'm sure the doctor would not want you to be without medication for an entire month.

[GMEN1984]

I apologize for the long post. To summarize

I was diagnosed with graves. Have been treated for 18 months. We tried 1st trial of remission but that failed.

Since end of march, Ive been having a sore throat and slight voice change. My WBC is normal. I dont have any flu or cold like symptoms.

Could the meds be causing the sore throat and voice change?