WHO WILL HAVE MADE THE CORRECT DIAGNOSIS - ENDO... - Thyroid UK

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WHO WILL HAVE MADE THE CORRECT DIAGNOSIS - ENDOCRINOLOGISTS OR RADIOLOGIST?

7 Replies

Meet with Surgeon tomorrow for results of the partial thyroidectomy I had 2 weeks ago.

At a pre diagnosis meeting 5 Endocrinologists believed the nodule to be benign, the radiologist had concerns. Cells sampled could not be identified one way or the other.

Interesting to see who is correct. One of the Endos is an eminent professor with "specialist" knowledge of the thyroid. My gut feeling tells me the Endos are right.

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7 Replies
Clutter profile image
Clutter

The pathologist will be correct ;)

Fingers crossed that the endos have it x

Duchy82 profile image
Duchy82

The histology results will tell you one way or the other all removed tissues go for histology testing. i had a cyst removed they thought it was a harmless functional cyst turns out there were borderline cells in there and im now on yearly monitoring.

Don't discount the radiologist concerns though they know what they are looking at more so than endos.

Good luck time will tell

hillbillygal74 profile image
hillbillygal74

Hi, in my case the surgeon was right. The important thing is does the Endrocrinologist think outside the box, listen to symptoms, the patient, and not base his diagnosis on the what is "normal range" of lab tests. My Endro found a benign nodule which he biopsied. Then for 10 years he watched my thyroid fall apart saying it "looks HAIRY". He felt I had Hashimotos but due to labs he could not diagnose or treat it. Not until my TSH was .015 did he finally take action. I went through radioactive x-rays so he would know if it was the whole thyroid or just the nodule. It was just the nodule. Then 6 months later my calcium is too high and he suspects a parathyroid disorder. Again the labs are not what he would typically see. He can't find it with radio-active x-rays, CT, every blood test known to man. He does see a large tumor which is what he told me I had ten years ago and thinks its the parathyroid tumor. He biopsys it and it's not the parathhyroid, in fact he then says it is a part of my thyroid that came off. He has now lost the nodule or tumor completely. Finally, he takes of for a holiday vacation in Hawaii and I can't see him for 3 mon. (next avaliable appointment) with all these blood test, CT, and etc. pending.

He says that he has to tell the surgeon where to cut????(there is only one place the parathyroid is, behind the thyroid) Mean while I am so weak I can't lift my arms. My husband schedules withe the endrocrinology surgeon

(the next floor up). She says that she doesn't know why the endos think they can find something the size of a grain of rice with an X-ray and thyroid hormones normally fluctuate up and down. She know the parathyroid specialist secialist we have been getting our information from. The surgeon apears to know more about the ureliability of lab to diagnose thyroid/parathyroid disorders. I have hyperthyroid/parathyroidism. She finds not one but all 4 parathyrod glands are bad (somewhat rare). She is able to leave 1/2 of the best of the 4 bad ones and has to remove my thyroid completely. I figure that if someone specializes in a feild of medicine the knowlege of rare and atypical conditions is the reason why we would need them in the first place......Oh, but while my doctor is fooling around looking for my parathyroid, I develope: high blood pressure, stomach pain, pain legs and arms that is more accute than cramps. BUT.. . . it doesn't end there. Many other disoders occure or develop as a result of thyroid parathyroid disorders. Thyroid disorders (reported by many endos) causes fibromyalgia to be triggered in some cases. This year(2 yrs post-op) I was diagnosed with : restless leg syndrome, fibromyalgia, and kidney stones. Oh, and the Brain Fog is never ending. I am beginning to believe that there is no end. . . . . My calcium was first high in 1996 but my primary did not address it or know the seriousness of it. I would believe the radiologist......Also try parathyroid.com web site for Norman Parathyroid Center (which does not apply to you (we Pray) but it has some great educational infro) or An EXCELENT Book The Thyroid Solution by Dr. Ridha Arem or his web sight is: TexasThyroidInstitute.com. I hope this was helpful, I don't trust endos or any doctor easily now. The doctor has to says to me : this lab says your thyroid is in normal range but that doesn't mean normal. I don't care what they say a benign nodule (like in my case) is not normal it means BIG trouble eventually and high calcium is never normal and means parathyroid disorder 99% of the time, Of course this is just my experience and what I have learn while trying to deal with my Thyroid nodule. FOR YOU. HILLBILLY GIRL

in reply to hillbillygal74

I was told today the pathology report said absolutely no sign of cancer. This particular radiologist who was at the ultrasound and first FNA is one of the best in the country. When I reserched him his expertise was in breat cancer not thyroid cancer.

The nodule would have gown and surgery would have been required in the future. it costs £4500 to have this op privately. I had it performed in a private hospital on the NHS. Scar is good and should not be visible by the summer. I feel ok about it.

You have had an awful time. I changed endos in April. Previous ones were useless. I think I may have found a good bunch now. My parathyroid, calcium levels and kidneys were all checked prior to scanning of thyroid.

Clutter profile image
Clutter in reply to

That's wonderful news. You must be relieved :)

Is your remaining lobe expected to pick up the slack of the removed lobe, or will you need thyroid hormone replacement too?

in reply to

Good news Chickens! (I had to wait 5 weeks I think) very glad to hear all is going well, I massaged a little bio oil into my scar after stitch out, can hardly see it now. J :D

in reply to

6 years ago TSH raised. Monitored after 31/2 years on thyroxine. Sent to Endo TSH still raised. Taken off thyroxine and been off it 18 months approx. Changed Endos and hospital April. Pituitary checked and kidneys no probs. Scanned thyroid in June found nodule and diagnosed hashimos. Went down FNA route, one incomplete FNA second one indeterminate found abnormal cells could not identify. Partial thyroidectomy 21/2 weeks ago result no cancer.

Now underactive. TSH must be in 20s now and T4 is out of range in 20s also. See Endos 20 Feb when uptodate bloods be taken and I have to go back on thyroxine. They will know if rest of thyroid can cope by this point. Did not get on with thyroxine. Felt dreadful. TSH did not come down when on it. I have expressed my concerns strongly verbally and in writing.

GP previously involved in dosing.I felt dose was never high enough and he was out of his depth. Endos assure me they will investigate fully to ensure premium health regained and ensure no other health issues. To be fair these guys have done thorough investigations so far. I will give them benefit of doubt and see how get on.

I am under no illusions. Talk is cheap Endos are very old school, do not agree with Armour and are very vocal about it. I would have quite liked to try it Have to wait and see.

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