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What would you do next?

In January of 2018, my endocrinologist (I’m diabetic) informed me that I have a goiter. For 2-3 years, I have had shooting or cramping pain in my neck. It has gotten progressively worse. When she told me this, I thought, “OK! We can figure this pain out now.”

She ran a series of blood work related to thyroid. All of which came in on the low side of normal range. Included in the tests were:
TSH = 1.06
TSH Receptor Antibody = <.90
T4 Free = 1.52
Thyroglobulin Antibody =  <10 and
Thyroid Peroxidase AB = 10.

She also scheduled me for an ultrasound on my thyroid. Ultrasound revealed I have 7 thyroid nodules: 4 on the right, 3 on the left. One of which is a centimeter in diameter. The others are around 5-6mm each.

The endocrinologist called to give me all the results and said, “You’re fine. Blood work is good and the nodules are small so we’re not worried.” I asked what I can do to have this growing pain diagnosed. I had started keeping a log and it happens 5-6 times per day where I get a level 10 pain that lasts for a few minutes. Her answer: Call an ENT.

I make an appointment with and ENT. By the time I go see him, I have a raging sinus infection. He scopes me and says he can’t really tell because of the infection and puts me on antibiotics and 30 days of prevacid to rule out GERD. I complete the 30 days of medicine and go back for a follow-up. I see his nurse practitioner. She asks, “Are you better?” My answer, “No.” Her response, “Let’s schedule a head and neck CT.” She didn’t examine me. She only asked the one question. I saw her less than 3 minutes.

I go for the CT. The office never calls with results. Instead I see them on the patient portal. Nothing remarkable. The thyroid nodules are noted and the sizes confirmed. That’s it. I go back to the endocrinologist for a 6 month checkup and she schedules another ultrasound because I’m not better. The ultrasound results are the same. The head of the practice notates my results with “recheck in a year.” Not totally unreasonable, but for some reason, NO ONE seems concerned about the pain that I’m having but me.

As long as the bloodwork is fine, the endocrinologist doesn’t think it’s an issue. And the ENT is a waste of time for me. Frustrated, depressed, and exhausted with it, I decide to ignore the pain and try to live without concern. Just not going back to doctors.

It’s a new year and I think I’m strong enough to re-embark on trying to figure this pain out. The problem is that I don’t know where to start. I’ve thought of some options:
1. Do I go back to the endocrinologist and beg her to do more blood work?
2. Do I go to a family care doctor and ask them to review my records for some guidance on next steps?
3. Do I find a new ENT and start over there?

Any help is MUCH appreciated. I’m feel like I’m crazy.
4 Responses
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1756321 tn?1547095325
The pain sounds like it is due to the multi-nodular goiter pressing on areas it should not be pressing on. As you mention you are diabetic this should interest you...

"Our study demonstrated that the insulin resistance was a risk factor for thyroid nodule in patients with T2DM. We concluded that the thyroid nodule volume and thyroid nodule size were increased with HOMA-IR in T2DM patients. The thyroid nodule volume and thyroid nodule size were larger in females than in males with T2DM, and they also increased with the level of IR. Alleviating the IR may decline their growth rate and minimize the volume and size."*

*Correlation between Insulin Resistance and Thyroid Nodule in Type 2 Diabetes Mellitus -
Int J Endocrinol. 2017; 2017: 1617458.

I needed magnesium to stop the sugar cravings (both insulin resistance and diabetes flush out magnesium just to add) so I could stop eating sugar and reverse my insulin resistance.

I watched a very interesting video on YouTube about a doctor with type 1 diabetes switching to LCHF (low carb high fat). This way of eating shows amazing results for both type 1 and type 2 diabetics. Highly worth watching.  YouTube Search: Troy Stapleton - I Manage My Type 1 Diabetes By Eating LCHF.

Also, thyroxine and iodine is shown to be more effective than either one alone to reduce thyroid goiter/nodules.

"Controlled trials have shown a beneficial effect of thyroxine treatment for both diffuse goitres and thyroid nodules. A goitre reduction of 20–40% can be achieved, but results are variable and potential long term harms of TSH suppression warrant consideration.18

The most difficult challenge for the clinician is to obtain suppression of the serum TSH level to between 0.5 and 0.1 mIU/L without going beyond this limit.

A recent trial demonstrated the combination of thyroxine and iodine was more effective than either agent alone. Thyroid nodule reduction was achieved with TSH being kept in the lower part of the normal range to minimise potential side effects.19"**

**Thyroid August 2012 - Goiter - Causes, investigation and management Volume 41, No.8, August 2012 Pages 572-576
Helpful - 0
363281 tn?1643235611
Hello, you have received some excellent answers, I would like to add that it would maybe be a good idea to see and Internist instead of a regular GP, they delve deeper into issues, thereby being able to maybe have some different ideas on what will help.
Helpful - 0
649848 tn?1534633700
Hi... Can you describe where the pain/cramping actually takes place?  

Do you have a copy of the ultrasound report?  If so, does it remark on any characteristics of the thyroid, the nodules or the position of the nodules?  It's possible to have pain from thyroid nodules if they're positioned just right, possibly putting pressure on another structure or something.  

I see, for blood work, they did TSH and Free T4 to test thyroid function, but I don't see a Free T3.  That doesn't really surprise me because many doctors don't do that, but since Free T3 is the hormone that's actually used by nearly every cell in your body, you really need to know what that level is in order to know if your levels are actually "normal".  

In addition, we need to know the reference range for the Free T4, since ranges vary from lab to lab and have to come from your own report for the best comparison.  Same for the TgAb (Thyroglobulin Antibodies) and TPOab (Thyroid Peroxidase Antibodies).  I can see that the TgAb is negative, but the TPOab may not be.
Helpful - 0
20841821 tn?1547942964
Hello! Sorry you are having pain, and going through this frustration. You thyroid nodules, or goiter, are within normal limits, but need to be followed. It is common practice to perform a fine needle aspiration or biopsy when the nodule is greater than 10mm. Pain is not usually associated with thyroid nodules, which is probably the reason you were referred to an ENT. I'm confused as to why they did a CT scan of your head. I understand the neck.

I would visit with your PCP and share your concerns. That seems like the next logical step. I hope you find some answers soon. Be well.
Helpful - 0
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