Hashi's and normal bloodwork but swollen thyroid

[scaulkins]

I have Hashimoto's. Today I had a biopsy of my thyroid (4 biopsy's today). The pathologist that performed it has experience with hashi's. He told me that "people with hashi's has a higher tendency of thyroid cancer". Has anyone heard of this?

I have had issues with swallowing for month and horrible gagging reflexes. My doctor had me get an ultrasound which showed nodules. The pathologist showed me that my thyroid is wrapping around my trachea. I asked him why it was happening and he said from lack or not enough thyroid hormone. What I don't understand is why my doctor didn't tell me this. She examined it. I had my blood drawn and I got a letter saying all was normal.....

Here is the lab results:

TSH 1.61 .4-4.6
Free T3 3.00 1.4-4.2
Free T4 .65 .56-1.64

So if I am normal, why the swollen, full of nodule thyroid? The pathologist recommended changing thyroid meds and/or changing dosages. I was on synthyroid but it didn't work and have been on Armour for the last few years. Does anyone know of other thyroid meds that I can talk to my doctor about?


Sandy

[WendyOH]

How much Armour are you on? If your TSH is 1.61, you are likely not on ENOUGH Armour. Most feel best with their TSH at the bottom, if not below, range.

[Prairieprof]

I'm not sure I can explain what produces thyroid nodules, but I just thought I'd pass on for reassurance that have a pretty large one, and Hashi's, and it was benign; really most nodules are. The thing to know is that, unfortunately, while some people have had their nodules shrink on suppressive doses of thyroid hormone, the success rate for this is evidently pretty low. One thing I've noticed, though, is that my nodule tended to sort of ache about 50% of the time --not hurt exactly or interfere with swallowing, but I had an 'awareness' sensation that bothered me; in the past few months, since I've been on T3 as well as T4 and lowered my TSH below 0.3, that sensation has about 90% disappeared.

[Leo41]

I have Hashis and nodules, and I've heard that there is a statistically higher percentage of thyroid cancer among those with Hashis. I've had one biopsy of my largest nodule (only one large enough to biopsy), and that was negative. However, my endocrinologist says that I will have to have regular biopsies (every few years) because the nodule can become cancerous at any time. HOWEVER, more than 80% of those with thyroid nodules never develop cancer.

I'm more concerned with the problems you're having with swallowing, etc., because from my reading about thyroid issues, that's one situation in which most doctors will remove the thyroid completely because of the dangers of complications.

My suggestion would be to get another opinion, since your doctor doesn't seem very responsive.

[nonstickpam107]

You're definitely not on correct dosage, and you could use a doctor who 'gets that'. Sigh. Nodules can be caused by several things (virus, Hashimoto's antibody activity, LACK OF HORMONE, too high of a TSH, etc.).

Although about 2% CAN have cancer, (see how low??) that's not what's going on in your case. You have Hashimoto's. You need a doctor to treat it...in other words, to get the TSH under a 1 (which is NORMAL) and higher T4/T3.

How long have you been taking Armour and at what dose? And would you like a list of doctors who know how to do adequate thyroid suppression?

Pam

[nonstickpam107]

Originally Posted by Prairieprof

I'm not sure I can explain what produces thyroid nodules, but I just thought I'd pass on for reassurance that have a pretty large one, and Hashi's, and it was benign; really most nodules are. The thing to know is that, unfortunately, while some people have had their nodules shrink on suppressive doses of thyroid hormone, the success rate for this is evidently pretty low. One thing I've noticed, though, is that my nodule tended to sort of ache about 50% of the time --not hurt exactly or interfere with swallowing, but I had an 'awareness' sensation that bothered me; in the past few months, since I've been on T3 as well as T4 and lowered my TSH below 0.3, that sensation has about 90% disappeared.

The success rate is really HIGH..eventually. I had seven nodules..once the antibodies reduced my thyroid and destroyed it to the size of a little shriveled walnut...um..no more problems! My doctor did a block and replace regimen on me in order to have this outcome. He does this with about a 98% success rate on those with Hashimoto's and large nodules (as long as they aren't 'hot' nodules and they remain 'cold' on a scan or biopsy).

You are correct that a human being must have both T4 and T3 incoming (as well as T1 and T2 in some..like me) in order to feel normal.

Pam

[nonstickpam107]

Originally Posted by Leo41

I have Hashis and nodules, and I've heard that there is a statistically higher percentage of thyroid cancer among those with Hashis. I've had one biopsy of my largest nodule (only one large enough to biopsy), and that was negative. However, my endocrinologist says that I will have to have regular biopsies (every few years) because the nodule can become cancerous at any time. HOWEVER, more than 80% of those with thyroid nodules never develop cancer.

I'm more concerned with the problems you're having with swallowing, etc., because from my reading about thyroid issues, that's one situation in which most doctors will remove the thyroid completely because of the dangers of complications.

My suggestion would be to get another opinion, since your doctor doesn't seem very responsive.

If your doctor would just suppress you enough and do follow up scans, I don't think you'll ever need biopsied again. Never heard of that....most docs don't WANT to do more than one biopsy, and then if it's a 'hot' nodule it comes out. Period. Maybe he meant to ultrasound/scan it every few years...but as soon as I got enough Armour in me to lower my TSH down to .22 and my FT4 was halfway of range, and my FT3 was all the way up to top in range, my nodules started to shrink, of course.

Many doctors don't realize just HOW suppressed that TSH needs to be and just HOW high that FT3 must be in order for your thyroid and nodules (which can spit out hormone any ol' time) to finally say "Oh, there's enough thyroid hormone...let's just go to sleep now". And that's what happens...you get enough hormone to stop the thyroid from sensing what the pit is telling it, instead it just stops while the antibodies attack and destroy it. You go on living the life you've always wanted (well...in a perfect world ).

Pam

[Prairieprof]

That's interesting, Pam; it seems to confirm that getting my TSH lower has helped the [cold] nodule. I know my T4 and T3 are not that high, though. Do you know any published documentation of this that I could use to help convince a doctor? All the medical literature I've seen points to a really low success rate for shrinking nodules (and the conventional endocrinologists now do not apparently support using suppressive doses).

I had a follow-up ultrasound a few months ago (normal, no change), and am scheduled for a second biopsy later this month, about a year after this first; I'm assuming it's just overkill to be on the safe side.

[nonstickpam107]

Well, THINK about it. If you have Hashimotos', the antibodies themselves are destroying your thyroid (and nodules). You can do a google search for 'suppressive thyroid treatment for shrinking nodules'. T3 is what shrinks them, so JUST giving T4 doesn't do much...that may be what they are talking about...the fact that the Synthroid only, don't look at the T3 docs may have found that doesn't work.

And I don't much look at anything the natl. endo society has to say..ever since nine years ago they 'decided' that women don't NEED no stinkin' T3. ACKKKKK!! My doc is one of the only ones in my area that does block and replace, and he does seminars on it, usually in Chicago.

The endo soc. also were the ones to push Synthroid even in the years it was sued for nonstabile dosing....(cuz you can get a patent on the natural thyroid hormones!!) and the ones who started the 'Oh, your BONES will crumble to dust if your TSH is optimal!!'. Sigh.

Happy reading...cuz you'll find about a year's worth out there...I'm in a study right now that is proving that a low TSH and high FT3 does NOT make the bones brittle (and I take daily STEROIDS for heaven's sake..and my bones look GREAT just from teh calcitonin that is in Armour Thyroid!).

Oh, you're in Iowa...nothing you can show a doc in Iowa that they don't already 'know'. Ahem. There is a doc just over the line in Neb. that does GREAT thyroid....my BFF is in Iowa and used to head the whole area thyroid group and had to just give up cuz there are so many docs who worship at the altar of TSH and endo society. Rough area to get great care (hear there is a women doc who is great though..holistic but only take cash...same with three others).


Pam

[Prairieprof]

Um, that's not entirely true about Iowa. I haven't quite shaken free of my lousy endocrinologist, but I found a wonderful and extremely open-minded doctor in my area (based in family practice but has moved into a focus on bioidentical hormones). And she is covered by insurance. And for the record, some of my medical care has taken place in NYC. (And FYI, my dear mother is a retired endocrinologist, so I find hostile blanket statements about endocrinologists as well as about my adopted state rather antagonizing.)

I'll look some more, but I HAVE googled this repeatedly and the vast majority of medical sources are skeptical about whether suppression works or find it "controversial" because of the supposed side effects (apparently it is less popular now than it used to be, even). I'm very open to the idea that it DOES work, and don't take the side effects too seriously, but I sure do NOT see print references out there. My question was only whether you could recommend any specific reference, because "some lady on the internet said" sure isn't going to carry much weight.

[scaulkins]

Thanks everyone for your responses. I've been on two grams of Armour for a year. I have an appointment on Monday. I will telll her and see what she says. She told me when I went in that I had a virus attacking my thyroid. I disagreed with her then and still do. After Monday, I most likely will be shopping for a new doctor.

[nonstickpam107]

Here: And Praireprof, if you've found a great doc who does natural thyroid treatment (not synthetics) and allows suppression, please nominate her/him on the TOP docs boards, or give info. My best friend was seeing a naturopath but she doesn't take insurance (she's an endo, yes). Love to see more info on you doc. (My doc helped me with these studies and 'explanation' btw...Oh..yes, that's who I am 'just some lady on the internet'...lol. why bother even replying?? LOL

http://www.thyroid.org/patients/broc...s_brochure.pdf and page 2 talks about suppression therapy for those without cancer.

Thyroid nodules: Treatment - MayoClinic.com

NEJM -- Suppressive therapy with levothyroxine for solitary thyroid nodules. A double-blind controlled clinical study (This is most probably the 'study' that you are citing that T4 does not shrink nodules..which is true, which is WHY doctors should either ADD synthetic T3 for patients who CANNOT tolerate Armour or natural thyroid...OR start giving the patient a non pantented natural thyroid (Armour) that has T3 IN IT....it's fun when the nejm actually points out that we all need more than just synthetic T4 )

And...most of the recent studies and articles will say "thyroid hormone suppression doesn't shrink benign nodules" should be read an scrutinized, because SOMEWHERE in the article it will discern between 'thyroid hormone' as being ONLY T4 and then go on to say that 'suppression' may work (they use the word 'suppression' to mean T3 also, or alone in most cases).

It's almost as confusing as articles reading 'HRT is available' and 'good for you' and then some where in the article it will discuss 'there are bioidenticals available too' as if we should all leap for the test tube/conjugated/pregnant mares urine HRT FIRST just because it has a patent and is making someone millions'.

We really have to read between the lines to remain safe and getting natural hormones and therapy.

Oh, and this 'some lady on the internet' also feels that any doctor who only does synthetics isn't going to 'read between the lines', sigh. AND of course...if it's not in print, don't believe it, lol.

Pam

[nonstickpam107]

Oh, here's a good page on thyroid nodules, what can cause them, differences between hot and cold nodules, and the percentage of those that are cancerous (less than 5%). It's written by 'some famous doctor on the internet':

Dr. Hotze Blog Archive Understanding Thyroid Nodules

Note: several patients here on this forum go to Hotze clinic...several THOUSAND have used Dr. Hotze's methods in reducing nodules by gaining suppression through thyroid hormone therapy OR kept nodules the same size as the antibodies from Hashimoto's reduced the entire thyroid to the size of a small, withered walnut. MANY articles on the net written BY thyroid doctors about suppressive therapy used for nodules..you just have to use the doctor's names...this particular article has been shown by patients to several other doctors...some of them contacted Dr. Hotze himself...but a majority of them just continued to stop learning anything new...and thus is why the doctors who use natural suppressive therapy continue to thrive.

Pam