Persistant Goiter

[eek]

I have Hashimotos Thyroiditis and my levels have been stable for a long time. However, i had a large goiter at one point (about 3 year ago), which has gone down, but never fully. My doctor said that so long as it doesnt get worse, everything is ok..but actually Im so tired of having a feeling of forced swallowing. Some days or some times worse than others. I cant remember when the last time i didnt feel pressure in my throat area. I even feel changes in my voice at times (and as an aside, cannot sing like i used to). I respect my doctor, but im not happy about not having a normal feeling in my throat. Is this really it now? A permanent problem? Is there anything that can be done to help ease my throat?

Thanks...

[eek]

Oh..my doctor called it "nodules". I have one side with more nodules than the other.

[Thules]

Eek, I sympathise with you having to endure this condition every moment of the day.

I'm sure you medically know a lot about it by now. However, I'd suggest you get a second, third and even forth medical opinion to ensure you may not have to 'just' live with it.

best wishes,

[moe666]

Take iodine if you are not and forget about the treated salt you need more. Low levels of iodine cause goiter and thyroid problems.Do you eat a lot of bread, Alot of flour for baking bread contains bromine which competes for iodine at the same receptor sights, the bromine blocks the iodine from attaching to the receptor so no benefit from the iodine you maybe taking. It takes a big dose to flush out the bromine.

I will contact a friend of mine about a good website for iodine treatment and get back with you.

[lopburi3]

I just found (on unrelated CT scan) that have enlarged thyroid and nodules (one side small but a number of them and other one large). Thin needle biopsy last week was inconclusive so have another scheduled in 4 week but in meantime put on Eltroxin until then. Have not yet had an issue swallowing (but now that I know about it do feel it (at least in my mind))and no idea how long may have had issue.

From what I have read on Google removal is an option if causing problems (but lifetime of medication follows).

[geriatrickid]

Take iodine if you are not and forget about the treated salt you need more. Low levels of iodine cause goiter and thyroid problems.Do you eat a lot of bread, Alot of flour for baking bread contains bromine which competes for iodine at the same receptor sights, the bromine blocks the iodine from attaching to the receptor so no benefit from the iodine you maybe taking. It takes a big dose to flush out the bromine.

I will contact a friend of mine about a good website for iodine treatment and get back with you.

NO.

Goiter in females is not necessarily related to iodine deficiency. It is more likely than not an auto immune related illness. And that is precisely what the subject confirmed when she stated a diagnosis of Hashimoto thyroiditis. It is a difficult illness to live with and often misdiagnosed.

I am going to suggest that the following possibility be considered; If the condition was diagnosed in Thailand, there may be some local bias involved. Hashimoto is what one sees in "Asia". However, if the OP is European, then there is a possibility that it is actually a different manifestation called Ords. Treatment of Hashimoto or Ords will usually result in the shrinkage of nodules. However, if there is still a swelling then there is a slight possibility that the wrong medication is being used because it isn't the correct illness. These ailments are difficult to diagnose sometimes, particularly if the personnel involved have limied experience with the patient class.

I am not qualified to offer a comment, but what I can suggest is that consideration be made to visit a facility with some western patient experience. Endocrinology is a tough field and you have to be up to date on everything. I am sure someone in here can suggest a good clinic in Thailand. Failing that, you might want to consider a trip out of Thailand to the EU or Australia. (Of course, none of my suggestion holds if the original diagnosis was made outside of Thailand.) The reason I mention this is that European women are more likely to have Ords, not Hashimoto.

[FBN]

Oh..my doctor called it "nodules". I have one side with more nodules than the other.

Residual symptoms of pressure and especially voice changes may indicate that a part of the gland extends lower in the throat than you can actually see. There may be indications for surgery but this will not be without risk. The fibrosis of the gland at this point in Hashimotos may make surgery really difficult and the risk of damaging the recurrent laryngeal nerve with potential paralysis of a vocal cord is high.

Best to see a very well experienced surgeon for this and have the necessary investigations (CT scans etc) done to determine the size and extent of the gland. Then make a final decision.

[Sheryl]

Indeed ignore the bit about iodine, not relevant to the OP's disease. Some goiters are indeed due to thyroid deficiency but not the type she had. In any case the goiter per se has resolved.

re diagnosis issue: The OP is under the care of a western-trained (3 years at the Mayo Clinic on top of a prior US fellowship at Howard), US-Board ceritifed specialist in thyroid disorders who is, AFAIK, the best in Thailand and internationally respected. (Lopburi3 or your reference: http://www.bumrungrad.com/overseas-medical-care/plan-your-visit/search-for-a-doctor.aspx) In addition, she had goiter which to my understanding s more consistent with Hashimoto's than ORDs and the treatment she has received has led to clinical improvement. So I think it unlikely that the initial diagnosis of Hashimoto's was in error.

However Hashiomoto's does not cause actual nodules. It can cause the thyroid to enlarge and to have irregular contours, but not nodules. However, people with Hashiomoto's have an increased incidence of thyroid lymphoma (an otherwise uncommon type of thyroid cancer) so any apparent nodule needs careful evaluation.

eek: is it clear that these are in fact nodules and not just a residual enlargement of the thyroid? If so, have your had a thyroid ultrasound? A needle biopsy?

"Although the thyroid gland enlarges with Hashimoto's' thyroiditis and sometimes even has exaggerated contours called bossilations, Hashimoto's thyroiditis does not form discrete nodules or lumps in the thyroid. If you have Hashimoto's thyroiditis and a thyroid lump, it must be examined completely to insure that this nodule does not represent a cancer. This examination is usually done by needle biopsy to prove whether or not the thyroid lump is benign or malignant. Although you are unlikely to develop thyroid cancer and Hashimoto's thyroiditis together, you are at increased risk for a special type of thyroid cancer called a lymphoma which can be treated and cured if discovered early. Therefore, no thyroid nodule should be ignored." http://cumc.columbia.edu/dept/thyroid/thyroiditis.html

See also http://emedicine.medscape.com/article/281983-overview

and google "Hashimoto's + thyroid lymphoma"

If you do not have a discrete nodule then the question becomes: is there still enough residual swelling of the thyroid to account for your symptoms (e.g. does the gland extend down into the neck, as FBN suggested?) or might there be an altogether other cause? GERD (gastric reflux) can cause a foreign body sensation in the throat and a feeling of trouble swallowing, for example.

need to get clear on the underlying cause first.

If your symoptoms are due only to some residual enlargement of the gland then as FBN mentioned, there are surgical options but they all carry significant risks.

Start by getting clear on the cause of the symptoms -- and ruling out the most serious one e.g. a new m,alignant process (lymphoma or other).

[eek]

Thanks all.

Sorry i didnt give more background initially.

Here are the my old threads, if anyone is interested:

Sheryl i am with two doctors. Dr. Rosanee (the doctor whos credentials you give in your post). Plus her recommended doctor here in chiang mai, Dr Ampica (Dr.Ampica is a lecturer in Thailand on Thyroid conditions and at one point taught Dr.Rosanee. Shes a very respected doctor in this field).

Dr.Ampica is the one that mentioned "nodule"..but her English, although excellent, is not the same as Dr.Rosanee. My goiter is not really noticeable, and is bigger on one side than the other (when you run your hands along each side). There seems to be no further growth in almost a year. No changes. But also not going down in any way. She is very reluctant to change my dosage of Euthyrox because the levels can so easily dip and swing. Ive always got the indication she doesnt want to look at surgery as an option. I havent seen dr.Rosanee for many many months. Was meant to about six months ago, but with different things happening, it didnt happen. I do trust Dr.Ampica though, but i think ill make a visit to dr.rosanee in a couple of months time when im due to be in Bangkok again.

I will go back and have another talk with Dr.Ampica because my last checkup was about 4 months or so ago. The goiter hasnt gotten bigger, but hasnt improved.

Ill go back in a few days when i finally shake off this dam_n cold i have at the moment...ughh..!

Thank you all again. Will update later. Feeling rather fed up at present..but very grateful to you all for taking the time to write.

[Sheryl]

Yes, do go see Dr. Rosanee as no matter how good the other dioctor may be, you need to be able to have a clear discussion in English.

When you see her, bring along any ultrasounds etc that have been done since your last visit to her. Ask her specifically if there are nodules present and if so ask whether lymphoma needs to be excluded.

If there are no nodules and this was just a linguistic mix-up, be sure to tell her how very uncomfortable you are and that if there is no way to further shrink the enlargement medically you might even want to consider surgical options. Also ask her whether radioactive iodine might be helpful in your case, it is sometimes done in Hashimoto's tho usually for really large goiters.

The cold you have may have made the throat thing more intolerable than usual and you may indeed be best off just giving things more time, but you need to know clearly if it likely to resolve or if the discomfort you have is a residual effect unlikely to improve on its own -- in which case, you need to know what the odds are of getting some relief via surgery and the associated risks so you can carefully weigh those.

[bina]

just out of curiousity, sheryl, could u tell me what the levels are that require meds.

ive done bloodwork and i have apparently a start of a thyroid condition which might be genetic also (mom, dad, and younger sis are now all getting 'roid treatmetns with the pills)...

my doc here on kibbutz however is more of the 'wait and see how things develop' school, claiming that the level i have doesnt need treatment since i am mostly asymptomatic... meaning ive noticed im more tired (im an active person, 'peppery' i think is the description he used) but feel more peppery and myself since i changed bback to day shifts /desk job not cooking nite shifts;

im menopausal and he thinks that maybe my symptoms are more menopausal then thyroidal (hair shedding more then nomal,etc)... also, cholesterol up , vitamin d and b12 down. on other hand, thyroid can cause menopause like syptoms including miscarriages and ive had two mini miscariiages (the kind that your period is very late but yet havent started to really feel the pregnancy, like month along)

he claims that 90% of israelis have b12 and vit. d deffiency because the standards are too high, not that we are all abnormal... my ths was 5 ... i cant get in to my tests now (its in te clinic internet file but lost the code)but it was higher then 2 (or is that .2 and .5)... so curious what other countries give as base norms....

[Sheryl]

Bina,

Prior to 2002 the normal TSH range was considered to be 0.5 - 5.0. Since then the American Association of Clinical Endocrinologists (AACE) revised it downward to 0.3 - 3.0. So your level is definitely elevated, although a doctor not up to date in the filed might still view it as borderline.

However that does not automatically mean it should be treated; it depends on

(1) whether you are symptomatic

(2) whether your T3/T4 levels are below normal; when they are, it is termed "clinical hypothyroidism"; when they are normal, it is "subclinical hypothyroidism", and last factor:

(3) whether thyroid antibodies are present.

In clinical hypothyroidism (low T3/T4), current thinking is treat if TSH>3 or if TSH>2 and the patient is symnptomatic.

In subclinical hypothyroidism (normal T3/T4), AACE guidance is:

thyroid antibodies negative, treat if TSH>10

thyroid antibodies present, treat if TSH 5 or over

The presence of thyroid antibodies = an autoimmune disorder and the odds of progressing to full blown clinical hypothyroidism are high.

These numbers are just guidelines, not absolute rules set in stone. Need to "treat the patient, not the numbers."

If you have not already, should have measurement of T3/T4 and test for thyroid antibodies. If antibodies are present you should definitely see a specialist in thyroid disorders and not just a GP.

[bina]

Bina,

Prior to 2002 the normal TSH range was considered to be 0.5 - 5.0. Since then the American Association of Clinical Endocrinologists (AACE) revised it downward to 0.3 - 3.0. So your level is definitely elevated, although a doctor not up to date in the filed might still view it as borderline.

However that does not automatically mean it should be treated; it depends on

(1) whether you are symptomatic

(2) whether your T3/T4 levels are below normal; when they are, it is termed "clinical hypothyroidism"; when they are normal, it is "subclinical hypothyroidism", and last factor:

(3) whether thyroid antibodies are present.

In clinical hypothyroidism (low T3/T4), current thinking is treat if TSH>3 or if TSH>2 and the patient is symnptomatic.

In subclinical hypothyroidism (normal T3/T4), AACE guidance is:

thyroid antibodies negative, treat if TSH>10

thyroid antibodies present, treat if TSH 5 or over

The presence of thyroid antibodies = an autoimmune disorder and the odds of progressing to full blown clinical hypothyroidism are high.

These numbers are just guidelines, not absolute rules set in stone. Need to "treat the patient, not the numbers."

If you have not already, should have measurement of T3/T4 and test for thyroid antibodies. If antibodies are present you should definitely see a specialist in thyroid disorders and not just a GP.

thanx sheryl

he's definatly an internet user (he hisself has a child with CP )and he doesnt mind us bringing info with us... so will ask; he did now ask for full hormonal blood work, i think the other factor, the t3/t4 or normal which would make me presently subclinic... like my father... could be our social med guidelines for treatments ; will get back to him after our yet more annoying holidays.... we have quite a few with this problem on the kibbutz so i suspect he is experienced and tends to send to specialists when he isnt sure (he's like a consultant, people complain here)..

bina

[Sheryl]

If T3/4 are normal and you are asymptomatic, just need to be sure you do not have thyroid antibodies. If that is ruled out then his "wait and see" approach makes good sense.