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EndocrineWeb Community Advice
Posted in: Goiters, and Thyroid Nodules.

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

From: wonderpatient - 6 years 27 weeks ago

First of all, let me warn you that a cup of coffee might be warranted before you start reading. This has been a long haul and any input is greatly appreciated! I'm an ER/ICU RN as well, so even more frustrated by lack of diagnosis...

Since Jan 8, I have been home sick from is July 14...

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 1.1 cm x0.8 cm x 1.3 cm hypoechoic slightly vascular 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 <1.7 , I believe). AM cortisol levels have been WNL as have saliva cortisol tests performed in the evening. 48 hour holter monitor done which showed interestingly enough only 3 PVCs, but 400 PACs (already was on diltiazem, which is what we would give for that)!

Saw endocrinology finally and ruled out pheochromocytoma after completing plasma metanephrine/catecholamine testing. Norepinephrine level was elevated 2122 (217-1109), epinephrine 58 (<95), dopamine <10 (<20). Did perform clonidine suppression test which was normal, and also MIBG scan which was negative. It is worth noting that after completion of clonidine suppression test my symptoms were improved. Flushing much less intense for 2 days as well as blood pressures that were moderately improved during that period. We did end up starting a clonidine patch 0.1 mg, which finally lowered blood pressures to 160/90-180/110. Not good by any means but better…sometimes.

Second opinion from endocrinology resulted in thyroid ultrasound and FNA. Left thyroid nodule essentially unchanged from 2010. Small cysts noted at the inferior aspect of the right lobe as well. FNA of left nodule revealed follicular neoplasm. Endocrine recommended that if I wasn't having all of these mysterious symptoms, that they would do a follow-up biopsy in 9 months. With the unexplained symptoms, we decided to go ahead and do a left lobectomy to make sure there wasn't anything surprising. Parathyroid function WNL. Other miscellaneous labs: IGF I 142 (63-373), FSH 1.3 (>=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. Stayed an extra night simply because of pain. Stumped everyone, they had never seen pain like this with thyroid surgeries. Finally decided that since I get migraines, that perhaps my body doesn't even sense pain the same as anyone else. Once we got home, I continued to have really bad pain for a couple weeks (cheeks would flush with pain only, completely different than before). 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, no medications had been changed. Blood pressures much more resistant to medications this time. Have had to titrate meds up a lot. After titrating diltiazem up to 360 mg with no improvement we started labetolol 200 mg twice daily and stopped dilt. Had to decrease labetolol due to near syncopal episodes (but interestingly enough, I never had a low blood pressure when I nearly passed out, I still was running high)!

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). Also did FT4 0.79 (0.76-1.46) and T3 130 (80-200) last week.

So, here is where things sit as of today, aside from multiple, utterly and completely stumped endocrinologists. 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.

To me this absolutely screams thyroid. This was the only relief from symptoms I have had since JANUARY. This also was not an uneventful post-op period where you would expect things to improve.

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. He 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. I'm the one that pushed for the surgery in the first place and told them that I thought it would help.

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. I'm the one monitoring my blood pressures and calling when things need to be titrated. I'm the one that can't just be a patient, I'm still an ICU nurse monitoring my lung sounds, heart rates, edema, etc., and calling to give report to the doctor and get orders in return. 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 thinks…who in return, don't really seem to be concerned with the situation or finding a fix. I'm stuck in the middle and can't do anything, aside from stay calm the best I can.

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. My surgeon said that with the oversight from the medical boards, that if he does a surgery that wasn’t recommended by someone and there is a complication, he can be reprimanded by the board. I feel like he 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 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 anybody have any ideas for what this could be, if it isn't the thyroid? Does my thinking make sense? Any feedback would be truly appreciated! It's so hard to keep an optimistic outlook when nothing helps. I'm 29 years old and don't want to have a stroke or heart attack because nobody can figure out what is going on!

I don't have specific lab values for many things, but do for a few. I tried to put those values within the post.

A million thanks in advance for taking your time and giving advice!!!!

Do you find this discussion helpful?

2 Responses

Is this good advice?

Welcome to the wonderful life of ïdon't want to think, because if the test does not follow the symptoms, that DOES NOT MATTER" I have been maybe 6, 7, 8 years, with something maybe a graves, hyper, who knows nobody knew. First started that If I had depression, that I couldn't sleep, anxiety (NO it happened that i never had it it was the heart beat). Summary , 2008, I am in graduate school , i am from another country , but too bad for doctors and me sometimes that my parents are MD specialized) When I arrived I started having cough and some bad colds and reactions, i was like fuzzy brain, (well ok she moved to another country) I was always cold...I started some tremors, shortness of breath....ok i have a history of asthma , can't sleep, the classes were like an episode of Charlie brown and Snoopy...
Btw, I am sorry but right now my thyroid is enalrgede and i am in pain and i am the one suggesting the tests! (yes I have to call my country talk to the endocrinologistthere, and we already have an script so they could order the exams they would not do otherwise. the tremos palpitations , anxiaty grad school, So i was seeing a psycpriatric, a pulmonologist because no body could explain why i endedup in bed with my lungs and coughing with nebulizations and only fever--> Allergies, it seems that is my reaction...Fast Forward , The primary care always was but go to the endocrinologyst, t3, and 4 in the normal range TSH 0.01--> Normal range (0.3 to3.5 but what is normal for you could be different for me)

Well thanks to my conference calls i had to show the doctor with the reuptake exam (btw I had all the symptoms, and some were paradoxical like hypo...) And they send me Methimazole 5mg once a day
No I had to get a new doctor, my right thyroid was enlarged, and i was having horrible symptoms , but no your t3 and t4, and pannel are perferct everything else that you are feeling it can't be, from june 14 until july 18, that the new endocrinologist could see meof course it was not that swollen
Right know I can't breath and possible have a thyroiditis...well is swollen I can't not even se the itsmus...o yes I could touch the is painful, and it is warm...The doctor on the phone instead of telling hey come whatever, he explained to me the report , and that is nothing (ok I wrote to him because it seems he doesn't listen) and my other doctor haven't release my info...
Well , because of the lung, and endocrino 1 only saw the depression pills, that the pulse was not the thyroid....I got 3 years of tension, and pulse and i was always in 110 at rest!
Not even my father agrees with the diagnosis, but i have been in bed since June 11, with my pulse to the roof, confusion, lost like 10-12 pounds...weak, sleepy dry skin, (paradoxical symptoms) ...The only thing is that doctors in my country send me for the asthma and lung condition a medicine, called ivabradine (look it up) Sorry that you can't get it in here, but maybe there is something similar...I know the fellow and the doctor oh is an (did not heart), but only reduces your heartbeat and that I think could change the world for you. For me well All those pills to sleep quietiapine, klonopin, etc etc...gone in 2 months of taking ivabradine And and for the first time i realized, that I never had like anxietyattack, it was the palpitations,
Oh yes if You don't understand, my apologies, but i even have visions problems, and scattered brain (it seem normal symptoms)hoarseness.
did you look it up that the doctors you have seen have more experience being clinicians, thyroid, parathyroid, instead of diabetes and fertilization? I have seen with this 2 guys the difference of one that just read depression ,... she has nothing, to one that is more specialized in thyroid...even a good internist.

When I was researching i started to see the pattern, diabetes, diabetes, other things, and at the end thyroid (like well i know the theory in the book) So if you have one surgeon, your endocrinologist is more diabetes, metabolic and fertility? The thing is there are no enough thyroid doctors ( thyroid cancer is different, they only work in that)

Really in Summary it seems that around the world one every day we need better clinicians that LISTEN to symptoms, and do something to try to pinpoint...which is not easy at all. Hang in least you only have one condition not 3 that have similar symptoms and either more difficult... Try to research ivabradine something that would be better for the heart rate... sorry if I was not help...But I think you are right, at least if they don't know they have to come up with a differential diagnostics (I am obliging my new endocrino to new reuptake, and for this second exacerbation biopsy, or needle aspiration) I need that they rule out...not to say "your blood test are perfects"so what are you talking about...Then How come when Medicine started what they had? but to listen to symptoms?

Is this good advice?

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 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!