Stumped my dr's, home sick 7 months, s/p thyroid surgery

[wonderpatient]

Since the beginning of January I, have been intermittently tachycardic (HR 95-120, generally 2-3 times a day), hypertensive (running anywhere from 170/110-220/140), nauseated, flushing (dry flushing, lasting anywhere from several minutes to 24 hours, present on face, neck, chest, and arms), and intermittent low grade temperatures (99.0-100.5).

Initially was thought to have influenza, but no swab done. Then ?bacterial infection, course of antibiotics with no improvement. Continuing symptoms with no change. Visited ER multiple times and received IV fluids, which did not improve tachycardia or hypertension as it generally does with dehydration. Sepsis workup was negative, CT scan chest negative as well as chest x-ray. CT abdomen/pelvis did reveal a focal lesion on the liver, and small nonspecific inguinal lymph nodes. Follow-up MRI finding was focal fat left hepatic lobe. Normal appearing adrenal glands and pancreas.

Prior to January I never had any history of hypertension or flushing. Flashback to Feb 2010... I had a mediastinal mass resection that pathology came back as benign thymic tissue. Had experienced tachycardia 4 months prior to resection and was hospitalized, sinus tachycardia 130's and ended up on diltiazem drip (avoided beta blockers due to asthma history). No mass on CT at that time! Had not experienced any further tachycardia since that then. July 2010 left thyroid nodule discovered on US and FNA completed...indeterminate, too few cells. This was followed by 2 ultrasounds 6 months apart with no change. It was decided at that point that no further follow-up was needed. This was at Mayo…

Back to present...Echocardiogram completed the end of January was normal. We did end up starting diltiazem CD 180 mg with absolutely no improvement in tachycardia or hypertension. Spironolactone initiated 50 mg twice daily, minimal improvement. Performed 24 hour urine for metanephrine/catecholamine...negative, I don't have the specific values from this. Also performed 5-HIAA at that time, which was negative. Phone consult with endocrinology by my primary MD came up with ?carcinoid. Chromagranin-A was negative as well as tryptase. Dexamethasone suppression test completed 3 times, slightly elevated (2.4, should be =0), Prolactin 1.3 (5.2-26.5), Calcitonin <5.0 (<8).

May 2, I had surgery. When I woke up in recovery it was like someone flipped a switch. No nausea and no flushing at all!!!! Blood pressures and heart rate still elevated. Also had horrendous pain at the incision site that we could not get controlled. Once we got home, I continued to have really bad pain for a couple weeks (cheeks would flush with pain only, and stop once improved). Blood pressures and heart rate began venturing back down to 140/80-160/100 (not good, but definitely a major improvement from prior to surgery). Continued to not have any nausea or flushing. Pathology came back as benign adenoma.

I continued to be the one in a million patient and ended up with an infection in my incision, an allergic reaction to mederma, and a myositis in the muscles on the RIGHT side of my neck…but still no flushing, nausea, tachycardia, etc. My body had every reason to have those symptoms, but didn’t!

3 weeks later all of my symptoms came back with a vengeance..blood pressures, heart rate, flushing, nausea, palpitations…EVERYTHING!! At that point, meds were the same dosages. Blood pressures much more resistant to medications this time. Have had to titrate meds up a lot. Diltiazem stopped, labetolol started (200 mg twice daily).  Had to decrease it due to near syncopal episodes, but interestingly enough, I never had a low blood pressure even with spells.

Currently on Labetolol 100 mg twice daily, Clonidine 0.2 mg three times daily, Spironolactone 25 mg twice daily, and Lasix 20 mg daily. Even with this regimen am very routinely running blood pressures 170/100-210/130! Heart rates finally 80-95. Other symptoms basically the same. TSH was 1.65 in Jan, 0.8 in June, and 1.77 last week (reference range 0.36-3.74),  FT4 0.79 (0.76-1.46) and T3 130 (80-200) last week.

So, here is where things sit as of today.  My gut feeling is that this is thyroid, even though labs are normal and have been the entire time. It seems really strange that after surgery, for a full 3 weeks, all symptoms were improved. Then, at the 3-4 week mark when you can start to figure out if the remaining thyroid will take over full function, symptoms came back. We already know that there are cysts on the remaining right lobe. It is also interesting that I was nauseated and had no appetite prior to surgery and gradually lost some weight over 5 months. In the immediate 1 month post-op period, I lost 15 pounds without trying, and eating high calorie, high protein, small meals.

I asked the surgeon if we should have removed the entire thyroid. He can see where I'm coming from and can see the reasoning behind it. He told me he can see a huge difference from before surgery, to after, and to now!  Also is willing to take the other half out, but endocrinology is adamant that this will not help flushing and hypertension issues. They also can't explain why symptoms went away or why they came back…or what they were from in the first place.

Next Wednesday I have a consult with the surgeon that trained my surgeon. If he has seen anything like this or can see my rationale, he will give the go ahead for surgery. I'm at my wits end and just want to feel better and have my life back.  I feel like my surgeon is the only one pulling for me aside from my primary doc. My gut is that this has to be done to prove one way or another.

I have sat down with my main endocrinologist and had a consult with another. In very clear terms I explained what I think is going on. I told them that they have to take a step back from their numbers and doctor hat. They have to be able to look at things from the patient perspective. Ultimately this is my body and that counts for something. I'm the one living this miserable, scary reality. The really frustrating thing is that my primary doc, who is wonderful, doesn't even know what to do for meds for BP anymore. He asks what endocrinology think, who in return, don't really seem to be concerned with the situation or finding a fix. I'm stuck in the middle and just want to feel better.

I do have a cardiology consult in August, but truly think that if we take the other half of the thyroid out that we won't need it.

Does my thinking make sense to anyone else?  Any feedback would be truly appreciated! A million thanks in advance!

[wonderpatient]

Figured I would update since it has been a while since my original post.  Had a second opinion with the surgeon that my ENT trained under.

The surgeon LISTENED TO ME, which was huge! He said that there comes a point in medicine that it doesn't matter what you do or don't know...ultimately it comes down to the patient listening to their body, and that the doctors need to pay attention to it!  I almost fell out of my chair.  Finally someone that understood that the patient has instincts.

He wanted me to bump up my cardiology appointment so that we could rule out any heart issues, since blood pressures have been so resistant to massive doses of medications.  He said that if cardiac is ruled out, that he would give the okay to remove the remaining thyroid lobe.  Once again, it was reinforced that no one can explain why symptoms went away or came back, or if surgery would actually fix the problem.  The thing that made me feel good, was that he said if I was his sister, he would do the same thing.  I asked for him to put it in writing...letter was sent to my surgeon...now I feel a little more relaxed simply knowing that we have an ace in the hole if we need it.  No more pushing for someone to listen to my theory.

I saw cardiology last week.  He had reviewed everything prior to seeing me, which was great not having to reinvent the wheel for the 500th time.  He had several things that he had in mind.  1. Pheochromocytoma (ruled out previously) 2. Carcinoid (addressed a couple times previously, but since liver MRI just showed focal fat and no masses on pancreas, and not having diarrhea it has been kind of put to rest...still have symptoms that fit) 3. Coarctation of the aorta (we were able to pull an old MRI and follow the aortic arch, looked ok), and finally 4. Renal artery stenosis.

He said that renal artery stenosis could make a very good argument for why the blood pressures aren't responding to meds appropriately.  So, I had an MRA on Friday to look at the blood flow.  The only medication adjustment was increasing my lasix dose, otherwise need to wait on results.  Now the cardiologist is on vacation, comes back sometime this week.  I called on monday and got a nurse to give me the main results from the MRA.  Sounds like no evidence of renal artery stenosis, kidneys looked ok, aorta was normal, and one artery was small in caliber...vague details, but at least decreased my anxiety level enough that I suppose I can wait until I hear from the doctor in the next couple days.

In the meantime though, my flushing has intensified to the point that I'm only sleeping 2 hours at night.  Flushing at least 20 hours a day. I have no idea anymore...just so frustrated...and tired of not feeling good...and tired of people saying "wow, you have a really bad sunburn," when in reality it is my out of control flushing!!!!

Will update again once I hear something, thanks for listening!

[Red_Star]

Pulse pressure is normally around 40mmHg. Eg: 120/80 = 40.  

Causes of high/wide pulse pressure includes:

Atherosclerosis
Arteriovenous fistula
Aortic regurgitation
Thyrotoxicosis
Fever
Anaemia
Pregnancy
Anxiety
Patent ductus arteriosus
Aortic dissection
Heart block
Endocarditis
Raised intracranial pressure  

My reason for high pulse pressure was hyperthyroidism (from the list above - thyrotoxicosis). When I had very hyper symptoms, I was surprised to see my labs showed subclinical hypothyroidism. That was because I had Hashimoto's thyroiditis and Graves antibodies concurrently (Hashitoxicosis is sometimes used to describe this).  My thyroglobulin serum was high due to excess thyroid hormone.  Just to add, extreme weight loss is one of the reasons for low prolactin.