Thyroid Disorders Community
need medical direction
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need medical direction

In the last two months I have been experiencing rapid heartrate, excessive body heat, eye problems, lack of concentration.  went to doctor, showed low TSH and raised thyroid hormones.  was put on metoprolol 25 mg to regulate heart rate in the middle of April. May 15th Ultrasound was performed, results were right lobe - 3.3 x 2.2 x 2.2 cm, left lobe 4.9 x 1.6 x 1.6 cm. Right lobe has one nodule in the mid lobe measuring 2.4 cm maximal and one in the lower pole measuring 1.7 cm maximal.  Left lobe shows a complex cystic and solid mass in the upper pole measuring 2 cm maximal.  Findings represent Multinodular thyroid with recommendation for nuclear imaging to determine if nodules demonstrate autonomous hyperfunction.  Nuclear imaging is scheduled for june 15.  
It seems like all my symptoms are getting worse.  In the last two days, some new symptoms have started,  i have been having "temple" headaches with lots of pressure on my eyes, I have also had increased leg pain, especially at night?  Is this all to do with the thyroid?
Currently I am dealing with my family doctor, should I be seeing a specialist?  Should I wait to find out the results and recommendations from nuclear imaging before asking to be referred.
37 Comments Post a Comment
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Avatar_m_tn
Sorry to read, your not feeling well.  Waiting can be tough, specially with symptoms.  Do your best to wait for results of imaging, for further recommendation by your physician.    
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Avatar_f_tn
thanks for your comments. everything just seems to be taking so long,  my biggest concern is the eye problems, that started in dec 2011, still do not know if eye problems are from thyroid or something else. concerned that six months have gone by with no real diagnosis or prognosis with my eyes. i just have no idea what i am all up against. it is so scary.  
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Avatar_m_tn
Hi, what type of eye problems are you having?  Your not alone, we are all anxious to get 100% healthy and stay healthy.  For some diagnosis/treatment is quick, but for others like myself, it's a turtle crawl.  I waited nearly 5 yrs, to start feeling well again, but I had mulitple disorders, thyroid being the last to resolve.  

My philosophy is, till something life threatening is confirmed, nothing to be afraid of.  Enjoy life friend.  Wising you well.  
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649848_tn?1357751184
I second AJ's question - what type of eye problems do you have?  Have you seen an opthamologist or is your thyroid doctor handling this?  

What were your actual thyroid hormone levels?  That would be TSH, Free T3 and Free T4.  Include reference ranges, since these vary lab to lab and must come from your own report.  

Have you been tested for Graves Disease and/or Hashimoto's Thyroiditis?

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Avatar_f_tn
eye problems started on dec 27, could not open eye, eye was totalling bloodshot, went to er. doc said an viral infection, started me on antibiotics.  two days later, vision was affected, could not see clearly.  went to optometrist, he said bacterial infection and elevated pressure in the eyes, started me on different antibiotics for 10 days and prednisone drops for four weeks.  vision returned to normal after five weeks. pressure in eyes still there, worse in the evening.  I have been to the optometrist several times since dec, everything with the eyes in healthy except the pressure and the actual shape of eyes (which he thinks is causing vision problems).  he is now waiting on all the test results for thyroid. Unfortunately, I do not have copies of the blood work.  I have had the TSH, Free T3 and Free T4.  He told me TSH was low and thyroid hormones were high.  He then ordered Thyroid Antibody Test.  He told me those were normal.  Then the ultrasound, which i do have copies of and were included on my initial post.  The pressure in my eyes is there all the time, sometimes worse, also still have vision problems off and on.  A few days ago started having headaches in my temples, which is totally new for me.  I have migraine headaches all my life, but have not had one since March 2012.  

So I really do not have answers yet to any of it, all the doctor indicated was that I am probably looking at surgery and radiation.  I don`t know if I should ask to be referred to a specialist before the RAI-U is done or wait until after.   Any thoughts or suggestions regarding my circumstances would be appreciated.  I am really greatful that i found this forum, it is nice to have people who understand.  I will be asking for copies of all my blood work and will post them as soon as i have them.  Thank you all.  

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649848_tn?1357751184
If it were me and my vision were affected, I'd want to see an opthamolgist. Additionally, I'd want to see a thyroid specialist, which typically, is an endocrinologist, but be aware that not all endos are good thyroid doctors.

When you get your thyroid test results, please post them, along with the reference ranges.
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Avatar_f_tn
thanks barb. I have requested copies of all my blood work, will post when i get them. Is there a specific test that is run to diagnose Graves Disease?
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Avatar_f_tn
Thanks for your encouragement,  sometimes my thoughts about of all of this get obsessive. i am trying to take it one day at a time.  
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Avatar_m_tn
Hello friend, I understand, we all have obsessive thoughts, when something is not going right for us.  Sorry to read about your eye problem, I had a bout with eye issues as well, I developed strabismus, never really pinpoint the cause could be diabetes or thyroid, but after 2 surgeries my eyes are working correctly again.  Don't give up hope, answers/treatments will surely happen for you.  

My Opt referred me to surgeon, for analysis of my eyes.  

Wishing you well on your journey.  
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649848_tn?1357751184
Thyroid Stimulating Immunoglobulins (TSI) is the definitive test for Graves Disease.  

You should also get tested for Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab), which will confirm/rule out Hashimoto's.  While Hashi is generally associated with being hypo, it often presents with periods of hyper, as well.  Best to get the tests and know exactly what you're dealing with.
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Avatar_f_tn
have my blood test results:
march 23     t3 free                          8.8  ref range 0.0 - 34.0 kIU/L
march 23     TSH                              <0.01 ref range 0.27- 4.2 mU/L
march 23      Thyroxine Free           21.1 ref range 10-25 pmol/L
April 18         Antithyroid                   7.2 ref range 0.0-34.0 kIU/L
April 18         TPO Anitobody           7.2 ref range 0.0-34.0 kU/L

What insights does anyone have?  Should there be any additional bloodwork that I should request before the nuclear imaging on June 15.
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649848_tn?1357751184
Please check the reference range for the FT3 - you have it listed as 0.0-34.0, which is exactly the same as the thyroid antibodies - I've never seen an FT3 range that looked like that.

I'm also curious what the Antithyroid test is, since it has the same result and reference range as the TPOab - could you please check that, as well?

I read back over the thread, and I don't see that you say whether or not you are on any type of thyroid medication.  If you are, please tell us what med, at what dosage.
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Avatar_f_tn
hi barb, the antithyroid and TPO antibody do show the exact same results on the report doctor gave me, don't know what either of them mean.  sorry had a typo, reference range on f3 should be 4.0-7.4.  I am not on any thyroid medication.  I was put on 25 mg Metoprolol (beta blocker) twice daily on March 24, 2012 because of resting pulse rate of 120.   Doctor increased that to 35 mg two times a day at the April 18 appointment as resting pulse rate was sitting at 100.  
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649848_tn?1357751184
TPO Antibody is Thyroid Peroxidase Antibodies.... Peroxidase is an enzyme from which thyroid hormones are produced.  Rather than attacking foreign substances, antibodies attack thyroid proteins.  There's another antibody test that should have been done, actually, 2 more.... one is Thyroglobulin Antibodies (TGab) and Thyroid Stimulating Immunoglogulins (TSI).  TPOab and TGab are used to diagnose Hashimoto's Thyroiditis, while TSI is the definitive test for Graves Disease, though about 75% of Graves patients will have TPOab, also. A small percentage of those with Hashimoto's will not have any antibodies.

I don't have a clue as to what the "Antithyroid" test is and/or why it would have the exact results and range as the TPOab ...... looks like a reporting error!!

Is the nuclear imaging the reason your doctor hasn't put on anti-thyroid med?

Have you talked to your doctor about the increasing symptoms?  You should also check on that Antithyroid test to see what it is and ask for the TGab and TSI.  When diagnosing Hashimoto's, both TPOab and TGab, should be done, because some people have one or the other, while some have both.  By only testing only the TPOab, Hashimoto's could still be undiagnosed.  

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Avatar_f_tn
HE HAS DELAYED THYROID MEDS UNTIL NUCLEAR IMAGING IS COMPLETED.  GOING TO BOOK AN APPOINTMENT WITH HIM RE OTHER TESTS AND REFERRAL TO THYROID SPECIALIST.  
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649848_tn?1357751184
I'm sure you didn't intend to, but writing in all caps indicates yelling.

I think you're wise in asking for a referral, but do be aware that not all thyroid specialists are good thyroid doctors. You have to be sure the specialist is willing to test adequately (TSH, FT3 and FT4 "every" time you test), and is open to treatment with whatever type of medication available, including the addition of T3 med if needed.

Pre-interviewing a doctor, usually through a nurse, can be a good way to find out how they treat patients.
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Avatar_f_tn
sorry about the caps, lol.   did a run through the list endos and ent nearby, have a few names that i will throw out to my doctor see what he thinks
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649848_tn?1357751184
Just because a doctor recommends someone, doesn't mean they will be good.  

Might be a good idea to give some of them a call and try to talk to a nurse, to find out what tests are done routinely, what meds the doctor is willing to prescribe and whether or not s/he's willing to treat by symptoms, not just labs.  That way, you'd be able to tell your pcp, which endo/ENT you want to be referred to.
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Avatar_f_tn
well, did my radioactive iodine thyroid scan.  have followup with my doc on jun 19, here is hoping we get the answers so we can start treatment.
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Avatar_f_tn
Hi:

I don't know if your situation is resolved, but reading about your symptoms, I couldn't help comparing it to the "bulging eyes" that are a symptom of hyperthyroidism (remember Barbara Bush?) It's a symptom of the disorder and once your levels are corrected, it should stabilize. And yes, you should be seeing an endocrinologist and opthamalogist (sp). It's true that we really have to be our own advocates, and it pays to shop around. I remember my mother in law, who thought her doctor's word was law. He put her on some really strong meds for arthritis and forgot all about her. She was in her 80s when she went into the ER with bleeding ulcers and had lost a lot of blood. She never questioned the meds, just kept refilling the script. The fact is, all doctors are not equal. Good luck to you!
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649848_tn?1357751184
Please keep us informed of your situation/treatment and how you are doing.

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Avatar_f_tn
other than beta blockers to slow my heart rate, i have not started on treatment.  but have an appointment with my physician next tuesday to discuss test results of the radioactive iodine scan, care plan, referral to endo, and ent  (if required). I have a good friend who is a registered nurse and she is talking with health care professionals to gather info on endo and ent specialists in Calgary, AB (where i will have to go for treatment).  

i know from personal experience that doctors are only human, they have to earn my trust,  and i know that i have to be my own advocate on any health matter.
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Avatar_f_tn
Thinking of you and this journey :)
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Avatar_f_tn
Scanning showed there is a dominant nodule in the midportion of the right thyroid lobe.  Corresponding to this nodule there is a focal area of fairly intense radiotracer activity on the scintigraphic evaluation.  Findings probably indicate a hyperfunctioning nodule.  There is a patchy and heterogeneous distribution of the radiotracer throughout the remainder of the gland.  The uptake pattern would be considered typical for multinodular goiter.  Much of the radiotracer is probably sequestered by the dominant nodule on the right.  Imaging findings are not overtly suspicious, although ongoing ultrasound surveillance in 3 – 6 months time could be considered to ensure stability of the morphologic appearance of the thyroid gland.  

Going to city for FNA on the dominant nodule on right lobe on Friday.  Don't know what all of this means.  One of my concerns is the left lobe containing a cystic and solid mass measuring 2 cm maximal.  I think it should have biopsy as well. What are your thoughts out there in thyroid land?
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Avatar_f_tn
Also, repeat thyroid bloodwork ordered.  
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Avatar_f_tn
Just got back from city.  Doctor who did FNAs says my thyroid is a mess, nodules everywhere.  Multinodular Thryroid confirmed, .....usually noncancerous.  Left lobe cystic solid mass still same size and biopsied.  top right nodule went from 2.3 to 2.5, lower right nodule went from 1.7 to 2.5, both biopsied.  Think I will be looking at removal of thyroid.  bloodwork results on tuesday...maybe start medication and get off these horrible beta blockers.  biopsy reports due in end of next week.  moving closer to the solution.
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649848_tn?1357751184
What  medication do you anticipate starting (thyroid replacement?) and what's so horrible about the beta blocker?

Did they mention removing your thyroid?

When do see your doctor again?  I'm happy to know that you might finally reach a solution.  Do keep us posted.
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Avatar_f_tn
My doctor and i discussed possible use of tapazole.  The beta blockers are making me very weak.  We have not discussed removing the thyroid in length, but he indicated that after the first ultrasound. I see doctor on tuesday next week to review bloodwork, biopsy results probably not back for seven days.  The calgary doctor who did the biopsies today indicated that she could have spent the whole day doing  biopsies on all the nodules on my thyroid gland.  With that being said and the fact that the two right side nodules have grown since may 15, i think surgery maybe a good option.  I have to consider that ongoing health problems, repeated 3 month ultrasounds and biopies on any nodules greater than 2 cm (standard that the calgary doctor indicated indicated today) may negate any private health insurance that i would need to purchase when we travel to United States each winter.  
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649848_tn?1357751184
If nodules are growing that fast, I'd agree that thyroid removal would be the way to go.  In that event, you might want to start discussing with your doctor other medications, since tapazole is an anti-thyroid medication.  In the event of removal, you would then need thyroid replacement medication.  

Strange that the beta blockers make you weak.  Are you sure it isn't the thyroid issue doing that, instead?
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Avatar_f_tn
My mom also had thyroid problems 40 years ago, they did the radioactive iodine to kill her thyroid.  She has been on synthroid for all these years as does fine.  So tapazole is for hyperthyroid, right?  It just seems to me that taking medication for hyper is just a bandaid solution, as the whole thyroid gland is the problem.  So if thryoid is removed, what is a good thyroid replacement medication.  

Beta blockers are certainly doing there job with my heartrate.  My family doctor says that is what is making me weak.  But the more info i gather on multinodular thyroid with hyperfunctioning nodules, it  probably is the thyroid.  I do know that i will not be taken off the beta blockers until treatment is decided and effective.  
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649848_tn?1357751184
Synthroid is a thyroid replacement hormone, which would be used after RAI, such as your mother had.

Yes, tapazole it for hyperthyroid, to suppress thyroid function, and is usually a "bandaid", but is often used on a temporary basis to control thyroid over production until a permanent solution is decided upon.  Sometimes, it's used on a more permanent basis as well.

If you have your thyroid removed, tapazole will not be an acceptable treatment. You will need thyroid replacement med such as synthroid (which your mother takes) or generic levo - both of which are T4 only medications.  Some people, like me, need an added T3 component, which I add to my levo, in the form of a generic T3-only med.  Or you can go with a desiccated replacement medication, such as ERFA, which is derived from porcine (pig) thyroid and contains both T3 and T4.  Pigs produce much more T3 than humans do, so the desiccated med contains considerably more T3 than your body would normally produce.  Some people need this; for others it's too much.  There are drawbacks to all types of thyroid replacement medications......

Many of us, who are hypo, whether from thyroid removal or from Hashimoto's thyroiditis (which destroys the thyroid), have to go on beta blockers in order to tolerate the replacement medication. You might find yourself staying on them, even if you get your thyroid removed.  I was lucky enough to be able to 1/2 my dose, but can't get to a point where I can stop it.
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Avatar_f_tn
It doesn't look as though anyone answered your question regarding tests for Grave's. This is usually done with an initial blood test looking at antibody levels (graves is an immune issue), normally these will be thyroid pyroxidase antibody tests. Normal/acceptable values for this are usually anything <35.
I hope this helps. I also noticed that there has been nearly a month since a post has been added here, pls give us an update on how you are doing and any changes
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649848_tn?1357751184
You must be confused about the dates  and information contained in this post.  If you'll read my post on May 31, you'll see my explanation of the antibody tests. In that post, I specifically, told SerenitySeeker that TSI is the definitive test for Graves.  Thyroid Peroxidase Antibodies (TPOab) is one of the tests used to confirm/rule out Hashimoto's; those with Graves may have those antibodies, but without the TSI, Graves can't be diagnosed. Rarely, a person will have both Hashimoto's and Graves.

As for it being a month since anyone posted - the thread is not a month old and both myself and Serenityseeker commented on it just last night.
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Avatar_f_tn
blood work from June 2012:
TEST RANGE                  RESULTS
T3 4.0 – 7.4 pmol/L 8.1
sTSH 0.27 – 4.2 mU/L .02
FREE T4 10 – 25 pmol/L 19.96

No meds, doc wants to wait to see if levels will drop on their own.  No referrals, doc wants to see biopsy reports first.  Unfortunately he is leaving on vacation for one and half weeks.  Will try to get biopsy reports from clinic and see other doctor.  
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649848_tn?1357751184
Is the T3, free or total?  If the lab report doesn't specify FREE, or FT3, then it's total, which is obsolete and of little value.
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Avatar_f_tn
free t3
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Avatar_f_tn
I developed thyroid eye disease because of graves. I am under the care of a neuro opthomalogist. My eyes slightly bulge out, they get dry, irritated and blood shot red. The thing that has helped me is the eye oniment, I use it twice a day.

I also had RAI & then surgery. 18yrs ago.
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