Severe Pain (Thyroiditis and overactive Nodules)

[lellie1]

PLEASE HELP.  I posted a question (subject: Thyroid and above Clavicle pain) which was answered by Dr. Mark Lupo  Please click on the link to read this post discussion.

http://www.medhelp.org/posts/Thyroid/Thyroid-and-above-clavicle-pain/show/1027649

Dr. Lupo's recommendations to do blood work was completed on 8/17/09 and the ultrasound was completed on 8/18/09.  The bloodwork indicated that my TSH is 0.03 (should be above .40) and my T4 Free is 2.23 (range 0.8 - 1.8), which would make me hyperthyroid.  The ultrasound indicated that I have 2 thyroid nodules in my right lobe with enlargement of the thyroid gland and thyroiditis.  My GP said that it is an overactive nodule.  The dominant nodule measures 24 mm x 21 mm x 15 mm, which I was told converts to 2.4 cm x 2.1 cm x 1.5 cm.  The doctor put me on 10 mg. propanolol 3 times a day for heart palpitations, etc.  However, the palpitations and racing heart started after I started taking Propanolol, so now I am taking 20 mg. 2 times a day.  My GP also ordered an I-123 uptake and scan which I have having done in 5 hours.  He also referred me to an ENT, whom I see him on Wednesday after the last scan.

Each day, I feel worse.  My husband said I should have gone to the emergency room, and can't understand why they are making me wait so long.  I know I need the hospital, but I am so scared.  This all came on abruptly.  I fear that I have thyroid cancer/  The pain is so severe, that I can't take it any longer.  As well as the thyroid neck pain, I have excruciating ear pain (both ears) and severe headaches with fevers.  Since this all started, 15 days ago, I have lost 13 pounds, but I was already thin.  I cannot sleep because of the pain.  I called my primary care doctor, and the nurse said that they have done everything they can for me and that this is above the GP's level of expertise, that is why they referred me out.  However, I feel like dying!

My left ear has been clogging, and I hear myself breathing in my ear and also hear myself talking in the ear.  It is very annoying.  I think this happens when I am dehydrated.  It is only better when I lay down.  I actually am an extremely active woman.  I walk 5 plus miles a day, but since this started, I have only been able to lay down and rest.

Can you please respond asap.   I want to give you a little medical history.  I was diagnosed vitamin D deficient in February 09,  and have been taking 2000 mg of D3.  My numbers are normal now, but I am still taking it.  Prior to that, I was anemic (iron deficiency). Due to heavy periods, I had an endometrial ablation 3 years ago.  I also had an ovarian cyst that ruptured 5 years ago.  I was also in excruciating pain, so I went to the ER.  The ER doc. thought it was appendicitis because of the severity of pain that I was in on my right lower abdominal side.  I have 4 children, natural childbirth.  My oldest is 20 and my youngest is 9 years old.  This by far is the worst pain I have ever been through.
      

[stella5349]

Your symptoms are very common with thyroiditis. Ear pain can be associated with the swelling of the thyroid.

Your doctor placed you on beta blocker for the heart palps but I do not see any indication of anti thyroid meds. If he feels you are hyperthyroid - which certainly should be the issue - why is he not placing you on meds to calm the issues down. Even with a hot nodule producing you can try meds.

Did you have Grave's testing? TSI tests can indicate if you have autoimmune Graves disease.

It sounds to me as though your doctor only knows how to read the TSH testing and if he sees abnormal numbers he is clueless and then refers you to other doctors for treatment.

I'd call the office he referred you to and try to get in soomer. He obviously feels he can not deal with your issues - so you need to push or find someone that does know how to manage you properly.

There is no indication on the report that this is cancer. With that size of a nodule - that warrantes further testing. You should have an FNA as soon as possbile. This nodule may be a producer of thyroid hormone and be the reason why you are hyperthyroid too.

[mrsomes]

You definately need to get to a specialist sooner rather than later.    I too had issues like this. I had been dealing with a very large, multi-nodule goiter for 20+ years with mild issues off and on.  It suddenly decided to act up and I wound up with symptoms a lot like yours.  I thought I was dying.   I also was given propanolol but I didn't react well to it (a number of women have issues with this particular drug).   I also had a vitamin D deficiency when this started.  My endo tried hyperthyroid drugs but I couldn't tolerate them.   I had been so sick for 4 months...headaches, ear aches, acid reflux, heart palps, spikes in blood pressure and weight loss (got down to 95 lbs).  Wound up having my thyroid taken out and, except for tweaking the meds and recovering from the surgery, I feel better than I have for years.  It was my endo, not my GP, who was finally able to give me some solutions.   Push for an appointment or get to the emergency room and have them hook you up with an endo asap.   Good luck.

[skeeterknitwit]

When you go for your scan today, you can ask the tech what your % is.  You can also ask to see the scanned images.
That way you will have an idea of what is going on.  And you won't have to wait a week or more for the Dr. to tell you the results.
Cancer is VERY rare with hyper nodules.  
Your Dr. may prescribe anti-thyroid drugs AFTER your scan.  I think they would interfere with results if taken before.
The hard part of the scan is that you need to lay very still for 10 minutes 3 times.  Difficult when you are hyper!
Hang in there!  And let us know how it goes.

[skeeterknitwit]

I just read your message to Dr. Lupo.  Did you have the sed rate done?  This simple test can indicate whether or not this is thyroiditis.  Very important!  You should ask for it if it wasn't done.

[lellie2]

Thank you so much for responding so quickly to my post and offering your advice to me.  Below is an update.

The ENT ordered the antibodies thyroid test, which is normal.  The sed rate wasn't ordered because Thyroiditis was confirmed, so it wasn't necessary.I had a Thryroid Uptake and scan, technique 341 mCi I-123 was administered for scan.  

The findings:  Markedly diminished thyroid uptate, showing less than 1% uptake.  At 6 hours there is a 0.9% uptake and at 24 hours, there is a 0.4% uptake.   Because of the very high background activity necessitated to try to image the thyroid, imaging is very limited because of the background noise but no gross abnormalities regarding the imaging is evident, although there could be anatomic abnormailty in the thyroid but may not be reflected on this very limited imaging assessment.  There is no evidence within the thyroid bed region of hyperfunctioning autonomous nodule as this would usually show a very hot focal area with background supression.  In this case, there simply is very poor uptake of the gland overall.  Potentioally there could be some ectopic lesion taking up iodine outside of the area of the thyroid scan.  This can be correlated with lab studies for further investigation.  

The ENT said that I have a bizarre case, because my blood work indicates that I am hyperthyroid, the scan indicates less than 1% uptake, which would result in a hypoactive thyroid.  He assured me that the blood work is right, and that I do have a hyperactive thyroid.  He also said that my nodules are neither cold nor hot.  Before receiving the Scan results, he assumed that the nodules were overactive.  He was surprised to learn that they aren't producing hormones.  He believes that my thyroid, which is overactive will just burn out when the thyroiditis improves and that I would not require R131 / Surgery or both.  

The ENT was able to get me in to see the endocrinologist within a week.  However, I was disappointed that none of my labs, ultrasound or uptake scan were faxed to the endocrinologist to review prior to seeing me or during my appointment.  She said that they weren't necessary, because I explained everything very well.  She diagnosed me with Acute Thyroiditis which has caused my hyperactive thyroid.  

She will keep a close eye on my Thyroid blood levels every 4 to 6 weeks, because she wants to adjust my meds accordingly and catch it when my thyroid becomes hypoactve.  She also stated that when this is all over, my thyroid should go back to normal.  Because I felt as thought she needed all of the reports, after my appointment, I collected the reports from my primary physician and physically delivered the reports to her office so she can to review...not sure if she did, though.  

The Endocrinologist said that she only needs to treat me with antithyroid meds.  Along with the antibiotics that I took, the propanolol and naproxen that I am currently taking, the endocrinologist added Methimazole (Tapazole).  I already took 40 mg. for the first 4 days, Tomorrow, I start on 30 mg.  I called her yesterday, because she wanted me to call her if I wasn't feeling by Friday.  Because no improvement, she added a 5 day course of steroids.  I am on 4 mg. tablets of MethlPREDNISolone (21 pk)  that I started today.  I took 6 tablets today, will taper down for the remainder of the 4 days.  She also told me to call her on Tuesday, after Labor Day to let her know how I am feeling.
I have been basically bedridden since Aug. 19.  It takes alot out of me when I am upright, especially moving around, causes extreme exertion, rapid breathing, racing heart, palpitations, nervousness, trembling, dizziness, weakness, muscle weakness (especially the thighs) also lethargia and headaches.  I also have lost 16 lbs, am irritable, constipated, get overheated, sweaty and cannot cool down.

Before all this started, I have been healthy was an extremely active woman.  Now, I cannot do anything.  The meds that I have been on include 1000 mg. amoxicilin 2 x day, which I finished on Aug. 24.  I was also prescribed 20 mg. Propanolol 2 x day, 500 mg. Naproxen 2 x day.  Although my pain has improved, none of those meds are helping my hyperthyroid symptoms. When I saw the Endocrinologist for the first time last Tues, she prescribed 40 mg. Methimazole in addition to Propanolol and Naproxen.  My symptoms haven't improved, so today she also added  MethylPREDNISolone 21 pk. (4 mg. tablets) which is a generic for Medtrol.  I will be on this for 5 days.  Today I took 5 tablets and will taper down by one each day.

I hope you respond with more recommendations for me, because I can't take this any longer.   I feel as though I need to be hospitalized because my quality of life right now has been greatly affected.  As I stated earlier, I have been bedridden and cannot be upright for very long.  If I push myself, I get extremely fatigued, especially the next day.

Dr. Lupo, could you please respond to this post.  I have been visiting your forum daily, but cannot post a question, because the forum accepts a limited number of questions per day.

Thank you again for all your help.

[Smilerdeb]

You have 'T3 Toxycosis' and because you had anti-thyroid meds in you when the RAI (uptake scan ) was done..the thyroid is resistant in 'being greedy ' for iodine.
You have no autoimmune dises as the antibodies are negative.
Your Dic has taken the right treatment although there is a bit more leeway with the beta blockers.
I am super drug sensitive and mine was raised to 80mg daily because of thyroid storm prior to RAI (radioactive Iodine) after anti-thyroid meds didnt work for me for Graves and Hyperthyroidism.
The propamonol (Inderal) CANNOT hurt you..in actual fact while you have T3 toxycosis (T3 too high) , it will help you more than anything.
Please dont stop taking them.
If the Methimaxole isnt doing the job to bring the thyroid levels down then ask for PTU as it works faster than MMI.
There is also Carbimazole which is like Methimazole but a fraction stronger.
The hot sweats is from the T3 being too high.
The beta blocker will help those levels to come down.

[skeeterknitwit]

The good news is - thyroiditis will go away by itself.
The bad news is - it can take a long time, up to 18 months to get back to normal.

Meanwhile, put yourself on light duty.  Too much activity can make your symptoms worse.
I was able to sleep better when I took methimazole and beta blocker before bedtime.

[lellie2]

Thank you for your help and your advice.  Just out of curiosity, how can you tell that I have T3 Toxicosis?  I didn't have any labs for T3 just for TSH and Free T4.  I was only on propanolol when I went in for the scan, but you thought I also was on methazole.  Do you think the thyroiditis caused the thyroid not to take up the iodine?

[Smilerdeb]

Quote....
The Endocrinologist said that she only needs to treat me with antithyroid meds.  Along with the antibiotics that I took, the propanolol and naproxen that I am currently taking, the endocrinologist added Methimazole (Tapazole).
The bloodwork indicated that my TSH is 0.03 (should be above .40) and my T4 Free is 2.23 (range 0.8 - 1.8)

Please excuse my spelling in my last posting...I was on the laptop when I posted my posting and it has sticky keys lol.

It is the T3 that causes the fast heartrate 99% pf the time and as your FT4 is over reference range then your FT3 would be high too.
An assumption on my part...I apologise if I am incorrect.

As Stella said...have you had testing for Graves Disease?
If not..ask for the TSI & TPO to be done.

[lellie1]

Thank you for explaining that to me.  I was wondering why the doctor didn't order a T3 test.  I had antibodies testing and that came back negative.  I thought that the doctor was testing for Graves.   Doesn't the TSI and TPO test for antibodies ?  I assumed the doctor already did Graves testing.   I appreciate all the advice and suggestions that anyone can make.    

I understand that my T3 would also be high with an elevated T4.  I just thought that you were able to figure out by the Scan that I have T3 Toxicosis.  I am trying to educate myself to understand this and to help me find a way to feel better quickly.  Being bedridden for almost a month has been very difficult for me and my family.

[Smilerdeb]

I know its not easy and my heart goes out to you as most of us with Hyperthyroidism have been where you are now.
But dont lose hope.
There is light at the end of the tunnel..there really is.
Most that do well....dont post here as they have got on with their life.
But I decided to 'give back' what others gave me to me when I was scared and alone.
I am doing good now and I am sure you will too.
Just keep your levels and meds monitored.
And remember one thing......you have plenty of support here.
(((HUGS)))

[TKD010105]

Hi,
I just wanted you to know that I have been going thru the same thing.  I started this in Nov. of last year and went and had the ultra sound and uptake test done.  I have multi nodular goiters.  No hot spots.  Finally got to an endo.dr. for her to tell me that it was probably Graves disease and put me on methimazole.  Was doing better (not back to myself but better) then this last week, I started with the shakes, heart beating thru chest, foggy thinking, etc.  This is horrible.  I hate it.  I made an appt. with a different dr. for Thursday and hope to find something out.  Also, I noticed that my neck looks like I have a lime stuck in it.  It is so swollen.  
Just needed some positive words of encouragement.

TKD

[lellie1]

Hello to my support team, can any of you help TKD010105?  

It will be helpful for you to share all of your lab results.  Could you please send the results of your TSH, Free T4, Free T3, TSI and TPO, and any additional testing results?
I am really new to this myself, and have received wonderful help from the above team members.  

All I can tell you is to hang in there and rest as much as possible.  Rest has been and continues to be the best medicine for me.  Don't push yourself to hard.  Any activity that beta blocker to help with all of those symptoms?  Do you have pain in your thyroid, or is it just enlarged.  Please include as much detail as you can.  You said that your endo put you on Methimazole because you  "probably" have Graves.  Did she confirm that you have Graves from the results of your TSI and TPO testing.  How long have you been on Methimazole and what is the dosage?  Are there any other meds that you are taking?
As you see, when I asked for help, I tend to write a book.  In order to help you, I think having too much detail is better that not having enough.
.
Good luck with the new endocrinologist on Thursday.  Unless your current endocrinologist is sending a copy of your file, please be sure to take a copy of all of your reports, labs, etc.

I hope you start feeling better soon.

  

[lellie1]

Oopa, I forgot to add your name to the list above when I posted my comment to you.  Please read.

[lellie1]

I just noticed that I messed up on two sentences in my 1st response to you.  What I wanted to say is to try to avoid any activity that causes your symptoms to exhasberate....no reason to be under distress.  I am fortunate that I don't work outside the home.  If I did, I definitely would be on a medical leave of absense.  

The 2nd sentence that I wanted to ask is:  Are you on beta blockers to help with your symptoms?  While it calmed my heart down, shakes, tremors, I think it caused my asthma to flare up.  I thought the way I was breathing was all part of thyrotoxicosis, but when the doctor reduced my meds, my breathing improved.  She cut back on Propanolol to 10 mg. 2 x day and also cut out Naproxen.  The MethlPREDNISolone did nothing to improved my breathing, and that drug is used for asthma.  Go figure!

Any way, good luck tomorrow.  Please send an update.  
    

[lellie1]

I had the antibodies testing done after my I-123 Scan on Aug. 26.  I wish I had the copy of that lab.  The ENT said that it was negative for antibodies, and that I don''t have Graves or an autoimmune disease.   Since I had that test done during my severe state of thyroiditis, should I have the test repeated again?

As I look back on all of my posts to you, I see that I didn't provide you with my detailed ultrasound, which I am trying to make sense of.  

Findings:
There is a very inhomogeneous echotexture to the thyroid gland.  Within the rright thyroid lobe there are two nodules.  One in the superior pole measuring
1.3 x 1.1 x 1.0 cm with ill-defined borders and is hypoechoic in the remainder of the thyroid gland.  In the right lower quadrant there is a 2.4 x 2.1 x 2.5 cm nodule also hypoechoic with central flow.  The borders are also ill-defined.  There is no evidence of microcalcification.  The left gland is very heterogeneous, but there is no definite nodule.

Impression:  
1.  There are two nodules within the right thyroid lobe measuring greater than 1 cm.  The dominant nodule is in the inferior pole measuring 2.4 x 2.1 x 1.5 cm with hypoechoic echotexture and ill=defined borders with central flow.  These nodules could be either followed up with additional ultrasound in six months to ensure stability verses fine needle aspiration to evaluate for neoplastic disease.
2.  Overall enlargement of the thyroid gland with diffuse inhomogeneous echotexture, can be seen in thyroiditis.

  I have an appt. with the ENDO in 10 days and wonder if she plans on ordering a biopsy soon.  I definitely will demand answers and ask about treatment options and the action plan.  I have to say that I am very impressed with my ENT.  He called me a few days ago to see how I am feeling and inquired about the endo's treatment plan.  So far, I told him that she is treating me with anti-thyroid meds and will monitor my levels and make adjustments as needed.  

Can you please help me make sense of the ultrasound?

[mrsomes]

I'm so sorry that you're still feeling horrible.  I can't comment on your ultrasound but it's good that you're seeing your endo and an ENT.   In my case I had 2 endos (1 for a second opinion) and an ENT who was excellent.    Thyroiditis is just so tricky.   My previous issues only lasted short periods of time (a few weeks max) so I was never properly diagnosed.  As I mentioned earlier I had horrible, debilitating symptoms for 4 months and they just were not letting up.  I also  wanted my Dr to put me in the hospital and just keep me there until somebody knew what was going on.   I couldn't work or function like a normal person.  Towards the end of this ordeal my endo felt that what was happening to me was almost a domino effect of not only my thyroiditis but the meds/tests I was going through.   The propanol, while getting rid of the palps, definately made me sick (spacy,foggy,depressed) and it is not recommened for people with breathing problems.   The small does of steroids I was on also had side effects.   He wound up taking me off all meds to see if that helped.   He also had me take a medical leave of absence to cut down on stress.  It calmed things down a little bit but my thyroid still couldn't get back to normal.  Hence the TT.   That was a drastic step; I feel better now...different but better.  All my Drs suggested the TT.  They couldn't tell me when I would feel better and all were concerned that as I got older (I'm 55) I might have a harder time handling the symptoms.  Plus, as I 've gotten older, I've developed more sensitivities to medications and all of them were concerned about that.  So I would suggest that you keep pushing your Drs for information.   Get add'l opinions.   Keep track of how you are feeling.   This was really important for me.   I kept a journal and wrote down everything...meds I took and how I felt, what I ate, how I slept etc.   This actually helped my Drs figure out that some of what was happening was a result of meds and not my thyroid.  Keep as much stress as possible out of your life.   As others have mentioned there is light at the end of the tunnel.   Thyroiditis can just go away on it's own or with the help of meds.   It may/may not ever come back and it may/may not be as severe.  Good luck.

[lellie1]

Thank you so much for all your help and advice.  I am really happy that you feel better now.  Yes, it has been very debilitating; however, I am doing really well now.  I am off all meds and feel great.  I pray my thyroiditis doesn't come back.  It has been the worst thing I have ever gone through.  I wish someone can explain what the ultrasound results mean.  Because waiting makes me nervous.  The endo will repeat another ultrasound when all my blood levels stablilize....possibly a biopsy if the nodules are still there.  Just had more blood work done on Friday, (Thyroid Panel, TSH, FT4, TSI, CBC, CMP) but won't know the results until my appt. on Oct. 1st.  Two weeks ago, my TSH was 0.02 and the FT4 was 1.3.  Because my FT4 is in range, my life is normal again.  Thank God.  However, because of the TSH being so low, the endo said that I still am hyperthyroid..  No hyper symptoms, more like hypothyroid!