History: Dxd with Hashi 5/07 (TSH 6.1, Normal T4, 1.4 cm nodule, heterogeneous texture, TPO 1238)
Internist-25 mcg levo, sent me to Endo.
Saw Endo two weeks later. Endo laughed at 25 mcg (asked if I was 80 years old), put me on 75 Levoxyl. Did his own US. Said no biopsy of 1.4 cm nodule needed.
6 weeks later TSH .169. Internist said alternate 75/50 mcg. Endo said stay at 75 mcg.
TSH dropped to "less than .04". Endo reduced to 50mcg. 8 weeks later Still TSH "less than .04 " (no one told me how much less. Taken off med 6 weeks later "TSH still less than .04".
Developed symptom of hypersalivation over summer (which has caused GI problems now) Endo said see ENT.
ENT wanted biopsy of nodule and ordered one at local radiology place. Endo said "I'll do it myself" though he thought unnecessary.
Endo failed to get enough material for lab to evaluate. Radiology place has cytologist on premises to ensure appropriate sample taken. Should've had it done at radiology place.
Still hypersalivating, insomnia, weight loss to 101 pounds, BMI now 18.1, occasional pain in throat radiating to jaw and ear ( endo says thyroid pain does that - when he pierced it during biopsy same jaw pain was experienced), placed on beta blocker for heart rate, have twitching of lower facial muscles, clavicle pain and numbness in face, right cheek.
Internist (next Endo appt is Jan 30) is sending me to sleep doctor ( I think sleep doctor will say "You're hyperthyroid" LOL).
Looked online at insurance record and found endo had run thyroglobulin antibody test at last appt. Dont' know result. Is this done to "re-confirm" Hashis?
Should I have biopsy repeated?
At what point should they attempt to treat and bring up TSH , even a little ?
How long can the over medication alone actually be soley responsible for the low TSH?
you are hyper now. this may be a thyroiditis (inflammation of gland with temporary over activity) or Graves type picture - some have called this hashitoxicosis.
Would do I123 uptake and scan - this should determine cause of the overactivity. If nodule is not functioning - get a good biopsy (I look at my own slides to make sure the sample is adequate before sending patient home so onsite cytology is useful).
with eye symptoms, would not assume allergy. test TSI and TBII - this is helpful for hashitoxicosis-graves determination and if elevated may signal thyroid eye disease. Would make sure there is a clear understanding of what is going on before committing to radioactive iodine.
Follow-up TSH taken 6 weeks ago was still suppressed after having been off the med. So I was asking could it still be the former over treatment that is still causing the low TSH? Endo says he thinks it may be my body that's "flipping" and he had one other patient that was "flipping" and he told that patient : "We are going to kill it."
I fear this statement was an indication of his future intent:-(
I had hypersalivation when I was hyper &
I have talked to others (hyper) that had the same. I'd frequently wake up at night choking
& also choked frquently during the day.
A few times I was close to passing out.
Has the endo done a free T-3 or free T-4
Has the doctor mentioed PTU or methimazole
to you? They are meds that will control the hyperthyroidism. They are regulated according
to the lab work & they are used in place of
RAI (radioactive iodine) which as the endo says "kills your thyroid." Your thyroid
can recover from this attack with the meds without any permanant damage.
I wished I would have known about the
different treatments before I received
RAI because I would have given the meds
a chance. The autoimmune attack can burn
I left a message for my Internist to send me a copy of all my thyroid bloodwork ( The endo's office sends him copies). I am switching to an "in network" endo because this one dropped out of my network Graceful excuse out LOL
When I saw the Internist a week ago, regarding the sleeplessness, he looked at his copies of the thyroid bloodwork in my chart and said "Wow. He really messed you up didn't he?" Had never heard a doctor say anything like that about another's performance before.
My eyes were examined (vision-wise) last week as well ( it was doctor day LOL) and was told my eyes are both excessively dry and allergic. She gave me steroid eye drops. She was an OD, not an M.D. I do have a gritty feeling a lot of the time and my lids tend to feel inflamed. I just assume that's allergies.
I'm sorry you went through something like this. It does get to be trying.. Last night I woke up unable to take a complete breath in without pains in my chest ( I assume due to the GERD caused by the salivating). I'd had a completely normal endoscopy last winter and have never had digestive issues prior to starting levothyroxine.
My guess is that HE is thinking ablation because he suspects I'll keep flipping from one state to the other, which means I'll be sick one way or another all of the time. If you are hypo (from RAI) then you can be treated for the one state and stabilized.
At least I think that's what he thinks. But I was never really sick when subclincial hypo. Those mild hypo symptoms are more subjective and attributable to other things, this has been flat-out icky.
Got out of shower yesterday, put on my bathrobe, got on the digital scale and it was 98.5 pounds.
Kit this is just a suggestion. I'm not a doctor,
just a nurse who has graves & thyroid eye disease
after I received RAI. I have had 8 surgeries
on my eyes.
You need to see an opthalamologist, which is
a physican who specializes in eye diseases.
An optometrist does not have the training of
an opthalamologist. This needs to be done
before you decide on your treatment.
Gritty dry eyes & inflammed lids are some of the first signs of (TED) thyroid eye disease. RAI can worsen existing TED.
Please don't ignore it.
TED is a devasting unpredictable disease.
Physically & mentally. Do you have light sensitivity at all...that's usually among
the first symptoms also.
Come to think of it- I may have some light sensitivity. I always avert or even cover my eyes when I see headlights, sunlight and I turn off desk lights at work that other people waltz by and turn on for me. They don't understand why I keep my work area so dark.
I will make an appointment regarding my eyes tomorrow morning.
It's weird to have started out being diagnosed as one extreme (Hashi's)and now be experiencing the other (hyper).
Thanks very much for your advice, it is much appreciated.
Same thing happened to me. I was found to be hypo in 1983 & was taking Synthroid everyday. Even after being titrated off the meds in 2004 my TSH was non-existant & free T-4 was 3 times higher than the upper limit of normal. I had every symptom but one & was not in control anymore. This thing that took over my body
ws in full control & at first I was actually afraid to go to the doctor because I actually thought I was dying. When I did finally see
the doctor I was treated for depression. Even with my being a nurse I had no clue what was wrong just that I could no longer motivalte. After all I was being treated for hypo right. I'd lost 60#'s by the time I was treated. At
the end I was losing 5#'s a week.
About 4 years before I was treated I had
gained 30#'s in about 3 months without
changing my diet & looking back I think
I was flipping back & forth between
Hashi's & graves. At that time I attributed
it to working midnights & 12 hour shifts.
Stupidity I know but we're all human.
It sounds like you have a nodule that's
kicking up though. Even with that it probly wouldn't hurt to have your antibodies checked for graves too.
Sometimes, I don't think the doctors realize
how bad this disease is for the patient.
It took a year to get my TSH back into range
& I was also found to have longstanding
B 12 deficiency . Between that the thyroid
& my eyes I am now disabled.
My doctor said I've been a learning experience for him because he's never had any experience with true hyperthyroidism. He's been very kind
& understanding. I wished I had seen an endo
prior to treatment but I can't go back. I just hope I can help others to not go in blind like
I'd say do your research but I know I couldn't have when I was so hyper.. I couldn't even think straight. So if you have any questions there is no one that can help more than someone who has walked in your shoes. Except maybe the doctor & they don't have alot of time.
That sounds absolutely awful!!! I guess the docs see the all the right "signs" and look for a typical outcome from treatment. They don't anticipate flipping back and forth.
I made an appointment with an Ophthamologist for Monday next and to tell you the truth I don't know what to tell her LOL
It's gotten ridiculous how much we now have to coordinate our own healthcare. I was never qualified to do it and right now am even less so. I can't remember anything. Not even why I call doctors sometimes.
The latest TPO is"about 1300". My Tgab test came back a bit positive (95) as well, but I haven't had a TSI.
I will tell the eye doctor about the irritation and the flip flopping thyroid problem and hope that's sufficient to get the right tests.
If you happen to see this, any advice on what to say to her on Monday is welcome.
Also, I understand your attributing the extreme symptoms to other things. It's what we humans do. We don't want to "have" illnesses, especially not unusual things like two thyroid diseases simultaneously.
It is unfortunate that we are not made aware that this is, in fact, possible (atypical but possible) early on.
I, too, have Graves. But I was hoping you could give me more info on the eye situation. I'm seeing an opthalmologist who says things are "looking okay" and is closely monitoring. The muscles are clearly turning leatherish and I'm having trouble seeing double. I guess I'm asking what I can do for my eyes TODAY to help slow this. Will they ever go back to normal?
I have a few nodules on both sides, blood levels fluctuating, Antibodies over 1000, but the Graves marker was at 119% with 130% supposedly a confirmation. The Opthalmologist doesn't really care what the blood numbers are because no matter what they read, I have Graves simply because of my eyes.
Don't mean to hijack this thread but you seem to be one to ask. Thanks.
Just wondered what you found out at the
Actually there isn't alot you can do to
slow it's progression except keep your
TSH in normal limits & if you smoke,
stop. They say those two things worsen
TED. Use artifical eye moisterizing
drops liberally & protect your eyes with
sunglasses. They can give you prisms
which helps with the double vision. I
drove very little after the double
vision hit. I wore temporary prisms on
my glasses for almost a year & the had
to be change twice when my double vision worsened. I had strabismus surgery in
December of 06 & it repaired my vision
in normal gaze but I still have double
vision in all other gazes (directions).
I just turn my head or cover one eye but
I still don't drive very much. The
pediatric opthlamologist said he could
try to correct the other gazes but he
would have to do surgery on the other
eye but I there was a chance of over
correction. I just opted to make due
with what I have.
Not all people need surgery. Sometimes
it just burns itself out like the thyroid.
If you do..........................
They will not do any corrective surgery
until your eyes are out of the hot phase,
or no longer changing for a period of
time. It starts with decompression
(removing some bone from the eye socket)
to allow your eye to go back into more
normal position. Nest strabismus surgery,
then lid correction. If they are done
before the hot phase stops some will most
likely need to be repeated.
I'm sorry you are going thru this...It is
a devasting disease that is disfiguring &
can be disabling. It effects you physically
& emotionslly & there's not alot you can do
about it but go to the eye doctor & keep your
eyes as comfortable as possible .
I just had Thyroid/neck ultrasound and the results were as follows:
'...A single nodule is demonstrated in the upper pole region on the left. It measures approx 1cm in diameter, with a heterogeneous appearance. The lesion is solid, with a peripheral hypoechoic halo.
Colour doppler examination demonstrates normal vascularity on both sides.
COMMENT: A solitary nodule is demonstrated within the upper pole of the left lobe of the left lobe of the thyroid gland, measuring 1cm in diameter. The lesion is solid, with a hypoechoic halo. No other abnormality demonstrated. '
Please explain the above to me ASAP! i'm writiing from Australia.
Just got my blood test results - everything seems normal. My TSH is 2.29 which is within normal range. My Anti Thyroid Peroxidase is.....wait for it......a whopping 203 !!! It is supposed to be under 60 u/L. Could this be indicative of 'thyroiditis'???
I'm having biopsy for a 1cm heterogenic nodule with hypoechoic halo. All else on the U/S said 'normal vascularity'.
I have a feeling I may just have Thyroiditis caused by a viral infection.
I found it on the web. I'll back arrow and see if I can find the definition.
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