General Question

DigitalBlue's avatar

Did my doctor give me a goiter?

Asked by DigitalBlue (7072points) April 10th, 2014

I have an extensive family history of hypothyroidism and goiter. My doctor has been watching mine for as long as I can remember, since I was a teenager, because I present with symptoms of hypothyroidism, but my labs always come back within normal ranges.
A few months ago, my symptoms were really bad, and he decided to give me a low dose of synthroid to take to see if I did better with a little thyroid boost. I ended up feeling hyper on it, so we stopped.
Now I have a goiter with nodules.

I had read that they treat goiters with synthroid or may prescribe something like that to shrink them, so I could be way off base and I may have just been predisposed to thyroid disease that is finally rearing its head after years of symptoms. The timing makes me curious, though.
Does anyone who has a better understanding of thyroid disease have an idea of whether or not it’s possible that this is from taking the medication? How do they treat it? I am very concerned, since I am traveling out of state in three weeks for surgery and I need to be in suitable condition to be operated on.

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49 Answers

Juels's avatar

If your labs come back within normal ranges, have they checked for the thyroid antibody? What all levels do they draw? Tsh, Free T4? Are you seeing a specialist or your gp?

I had a similar problem and it took 10+ years to diagnose. My levels were low but squeaked by in the normal range. I have Hashimoto’s Thyroiditis. Hashimoto’s is prevalent in my family (mom, 2 sisters, my daughter, and me).

Juels's avatar

Also, my daughter just started taking thyroid meds last year. Diagnosed at 15 years old. Since her levels were so out-of-whack, she had a rough adjustment. Mood swings, feeling antsy and jittery. It takes months for your body to regulate the dosage. She’s finally started to even out.

DigitalBlue's avatar

GP, I think he suspects Hashimoto’s, but he said that there are tricks to get insurance to cover the testing. I get the impression he has suspected this for a while, he has been really diligent about watching it and he mentioned Hashimoto’s at my appointment and is also running an autoimmune panel along with my thyroid stuff. He said you have to meet certain guidelines to qualify to be tested for the antibody or insurance won’t cover it.
I know that thyroid stuff can be sneaky, my GP seems to be on top of that, but after the medication did not work out for me this winter I just figured that it had to be something else. Now I have this goiter and mass and I am not sure what to think. I have to wait for my blood and ultrasound results to come back. I just didn’t know if it was possible that taking the synthroid while having normal labs might have caused my thyroid to freak out. I honestly don’t understand how it works well enough, though, which is why I thought someone in the collective might know.
Thanks. :)

Juels's avatar

Insurance is such a scam. You have a family history of thyroid disease and symptoms. It is a simple blood test to check for the thyroid antibody and can be handled when your Tsh and Free T4 are drawn. Can’t believe your GP has waited this long. With Hashimoto’s the thyroid may appear very vascular on ultrasound. Don’t know why your thyroid suddenly expanded, but an untreated (or improperly treated) problem can produce all sorts of results.

Juels's avatar

Once you get the results, I’d interested in what they found.

DigitalBlue's avatar

Thanks. Hopefully this will all be sorted out now, I’m curious to hear what comes back with the current blood work and ultrasound. I have a whole bunch of nonsense going on at once, so it has been hard to sort my symptoms and testing and everything else. It’s like years of subtle symptoms have finally come to a big, explosive head.
I will update with results when I have them. Hopefully this process moves fast, he knows I am having surgery and it’s not exactly a simple thing to reschedule, I need to be “okay” pretty quickly here.

JLeslie's avatar

Your doctor did not put you on a low dose, which bothered me if you remember. Of course you became hyper on it. I said you most likely would be overmedicated, I wanted you to get a blood test within two weeks of starting, which I think your doctor was willing to do, which I like, but he is out of his depth. You should have been started on 12.5 a day (half pill of the lowest dose of Synthroid) or even better maybe take Armour 15, which is their lowest dose and get extra T3 that way. I don’t expect you to understand all that babble, but it might make sense as you investigate more.

I don’t believe the meds gave you nodules, but I do think you might have a goiter because you actually do have a thyroid problem.

It doesn’t matter if you have Hashimoto’s or some other hypothyroid condition, they are pretty much all treated the same. I would think your doctor has checked your antibodies before.

You might only need T3 if your TSH is good and T4 is good but still feel like crap. I have no idea what your T3 levels look like of course. You can get T3 in the Armour drug, but there is some T4 in it, or take Cytomel which is only T3.

See a specialist if you haven’t yet, do not continue working with this doctor regarding your thyroid.

That’s my advice anyway.

DigitalBlue's avatar

@JLeslie I do remember, yes, you are always really helpful with this stuff. Thanks as always.
I haven’t seen a specialist. Who do I see? An endocrinologist? Should I ask for a referral?
I am very nervous that this will mess me up for surgery because this thing is… palpable. It feels like it is choking me and my doctor felt it very easily. It’s not so big that you can see it, but I am worried about being intubated with this in my throat. Also, my blood pressure and heart rate were reading a little high, which make me concerned that I may be hyper again, but I was also feeling extremely anxious and I think that contributed a lot. Obviously we will know after the blood work comes back, and he is also checking for mineral/electrolyte imbalance because of some other things going on. Also for vitamin D, which I know is something you’re also familiar with. Rambling, but you know, it gets me stressed out. The timing is awful. Thanks for weighing in.

JLeslie's avatar

As far as your surgery, I think the high BP and racing heart will probably be a concern to him before the goiter. But, that is just a guess I don’t know what a surgeon actually looks for in terms of vital signs and blood work. Since your surgery is considered elective he will want you to be in reasonably good health I would think. Is the surgery being performed by a Reproductive Endocrinologist? People are intubated with enlarged thyroids to have the thyroid removed, so I assume that is not a huge concern, but I really don’t know, that is guessing on my part.

High BP usually means slow thyroid, but so much can influence BP that it doesn’t necessarily mean your thyroid is slow. Fast heart rate usually means hyperthyroid, but again other things can affect heart rate.

Has your doctor checked your vitamin D before? I can’t imagine your D is normal without supplements, unless you actually are tanner than most of the photos I have seen of you.

You only need a referral if the endocrinologist requires it or if your insurance requires it. Will your doctor be insulted if you tell him you want to see a specialist?

To expand on my upset-ed-ness about your dose. When I am in normal limits, but towards the low or high end I change my dose by 12–15mcg a week. He had you on 50mcg daily when your numbers are normal. It isn’t unusual for thyroid patients to be very sympomatic even within the normal range, but usually towards the edge of being outside the normal range, and endocrinologist try to slightly move the number with a very minor dose change. My friend who was on 75mcg went to taking an extra half pill once a week, so an extra 37.5 a week. My mom alternates 112 and 125 every other day, because 112 daily wasn’t quite enough. My aunt takes 25 daily and adds an extra half pill twice a week. In all those cases it is less than 50mcg a week to slightly move the thyroid numbers.

I was put on 75 mcg daily right away when I was diagnosed, but my TSH was 95.6. Normal range usually tops out at 5.5 more or less, most endocrinologists prefer below 3. I wound up needing around 90 daily. Many many patients are started on 75mcg, and I think maybe that is why your GP thought 50 daily is low, but the patients who are started on 75 have high TSH, low T4 and low T3; you didn’t.

Goiters form from both underactive or overactive thyroids so we won’t know for sure until your blood tests, but even with the blood tests I think you need to see an endocrinologist. You have suffered enough. Your case is complicated. You need a specialist to really figure it out, and a good one at that. One I hope who considers using T3 if you need it, a lot of endocrinologists don’t.

I want to reassure you that the goiter will go away if all you need is some Synthroid. You probably know that already. Mine was quite large, I could see it just looking in the mirror, and feel it when I swallowed, and it shrunk back to normal when my blood tests finally became normal. It grows again when my thryoid gets out of whack.

Also, about the antibody test, one reason it is important to doctors is because they need to write down the diagnosis code, it has nothing to do with how they treat the thyroid problem usually.

Have you ever seen a rheumatologist? Not that I think you should see one next, but I would guess if the endocrinologist finds nothing rheum would be your next stop.

I really don’t know for sure what is going on with your thyroid obviously, but the goiter is now a symptom that can’t be dismissed like other symptoms you have had. It is the thyroid. BP, dry skin, exhaustian, anxiety, all can be dismissed as something else. As much as the goiter is bothering you, it might be the thing to get you proper attention.

JLeslie's avatar

The autoimmune panel is probably what he is worried about for insurance. Did he take a lot of blood? The antibody test for Hashimoto’s is inexpensive and one test. If he did other autoimmune stuff like for Sjogren’s, lupus, etc, that can be expensive and would have been a total of more like 5 viles of blood.

DigitalBlue's avatar

I am worried that the goiter is throwing me hyper or hypo and causing the cardiac stuff, that’s why I am worried about this all happening now so close to surgery. I have never had any kind of heart issues or blood pressure, except that I am prone to white coat syndrome, but that corrects itself after a couple of tries when I start to relax and has been that way forever. I just had a check up not too far back where everything came back spic and span, cholesterol, blood pressure, kidneys, liver, sugar, etc, everything was perfect.
Where I live, and given this past winter, I can’t imagine my vitamin D isn’t low. I am definitely as pale as I look in photos, haha. I don’t believe it has ever been tested. I mean, it’s possible, but if it was then it was normal, because I have never heard anything about it.

I will see about an endocrinologist. Maybe he will suggest that once my labs come back? I have never been, oddly enough, but I am positive my doctor will not be offended. He is always very receptive to my input, which is why I like him, he is one who thinks that the patient’s experience is important. I have not seen a rheumatologist, either. I really have never had proper assessment or treatment for any of this until now.
I understand and agree with what you are saying about the dosage, at the time I was unsure, and obviously that didn’t work out for me. But now I am back to thinking it may have been my thyroid all along, but that approach was probably not best. I will seek a second opinion, especially now, because like you said, this is not a symptom that can be chalked up to something else.
They took 5 or 6 vials of blood, I can’t remember exactly. Both of my sisters have autoimmune, so I figure it’s about time I was tested for it, but as I said before I feel like all of this was sort of festering just below the surface and has only just recently finally come to a boil, so to speak. I am just overwhelmed because it feels like now that things have started to gather momentum, stuff is breaking left and right.

JLeslie's avatar

@DigitalBlue I think things are about to get better. Worse first maybe, but better quickly after that.

The thyroid gets enlarged as a symptom of other underlying causes not the other way around. That’s why when the underlying cause is fixed the thyroid shrinks again on its own.

If you go to a specialist bring your blood work even if the blood work is normal. They will repeat all of it if you don’t have a copy and it is such a waste. Waste of your money or the insurance company. Some tests might need repeating by the time you get to a specialist, but other ones no. the autoimmune tests would be the specialty of rheumatology, except for the Hasimotos test which would be of more interest to an endocrinologist, but many people with Hashimoto’s have addition rheumatological conditions. I don’t think you have additional diseases like Lupus, I hope you are not stressing out about something like that. The multiple blood vials could be tests for Lupus, and alike, or could just be the standard CBC, CMP, Thyroid, and you said vitamin D, that could be 4 vials right there.

cazzie's avatar

I have Graves disease, but live in a county with universal healthcare. Never had to worry about tests being covered by insurance. I’m really sorry that is in your way for a proper diagnosis. Taking vit D has been shown very worthwhile. Beta blockers can help with the bp and heart stuff. Talk to the doctors handling your surgery.

DigitalBlue's avatar

@JLeslie thanks, I feel the same way, I hope we are right. I’m not stressed about it being lupus, I don’t think it is that, but my sister has lupus, so it’s not entirely out of the realm of possibility. On my paperwork it said CBC, CMP, thyroid, vitamin D, hypomagnesemia, rheumatoid panel. The woman who drew my blood was new, she had to copy the list of what was on a “rheumatoid panel,” but I didn’t happen to see what was on it, and I have never had one done that I know of. I will bring this blood work and the blood work that I had over the winter if/when I go to another doctor.
@cazzie thank you, I do plan to call the surgeon’s office after I hear back from my doctor and have a little idea of where this might be headed.

JLeslie's avatar

I wonder what “thyroid” will test? Is it a thyroid panel? My doctors always spell out the various tests. TSH, T3, T4 free etc. There probably are panels though, it would make sense.

The rheumatoid panel is probably the expensive one.

Let us know how it’s going. I hope you get some straight forward answers.

DigitalBlue's avatar

They called and said there is a problem, but they wouldn’t tell me in regards to what over the phone, so I have to go in on Monday.

JLeslie's avatar

@DigitalBlue Hopefully, it is something easily fixable. I wish they would have indicated for you where the problem is so you had an idea, even if they want to discuss it with you in person.

DigitalBlue's avatar

@JLeslie that is what I said. I asked if they could tell me which test or what to expect, but she said she couldn’t say. I think that’s cruel, they shouldn’t do that, now I will be worried sick all weekend.

JLeslie's avatar

@DigitalBlue I hate that attitude also. Doctor’s love it, because they can charge you to come back in for results. Sometimes it is warranted to see the doctor in person if there is a new diagnosis or if you need to take a medication that is new to you. Doesn’t matter, the point is they could give you an idea which test. In some states you can see your test results on the lab website, but other states it is against the law. I live in a state that it is against the law and I can’t for the life of me figure out why it is legal to prohibit me from seeing my “medical record.” Basically, that’s what it is. Quest labs and others are trying to change the laws. I guess their lobby goes up against the AMA. I think we should all write our congressman.

DigitalBlue's avatar

I agree. All I can think is that I sure hope it wasn’t my blood pressure, because this can’t be helpful!

JLeslie's avatar

It can’t be your blood pressure. If your blood pressure needed treatment it would be addressed at the time of the reading, they won’t let you leave if your pressure is extremely high. Didn’t you see the doctor when they checked your blood pressure?

DigitalBlue's avatar

Yes, but my blood pressure always reads high at first. It was pretty high this time, but sometimes it does jump up, I know right before my last surgery it was higher (and it went back down, but again, I was a nervous wreck.) He said that he wanted to make sure that this is only white coat hypertension, because he said he was worried I’d go down for surgery and they would refuse to operate if my blood pressure was reading like that. Which makes perfect sense, and I agreed with him, I still do. I am worried about that. Obviously I need to stop worrying so damn much.
They gave me a test where they strapped my arm down to read my pulse rate and took my blood pressure at the same time, I don’t know what it is called, I have never had any trouble with my heart to be very familiar with the testing. The girl could not get it to read because my heart was pounding, but at that point I was pretty much having a full blown panic attack. I have a phobia or something about having my blood pressure taken, specifically, so it was stressful and she was not able to get it to read me. Every time she would restart, my heart rate was reading higher and higher. So, when she asked my doctor, he said that my blood work would show if there is an actual problem with my blood pressure or if it’s still white coat hypertension. I’m thinking it was probably higher than usual for it to concern him, because all of my doctors know about this and it has never been a problem, my blood pressure when I’m calm is normal.
But, I would also think that with an electrolyte or mineral imbalance, that could really throw off my BP, or thyroid stuff could also create a problem there. I just don’t think it is actually as high as it was at the dr’s office, because I felt sick and dizzy like I was going to faint, and they read me at 142/100. I don’t usually feel like that, so I assume that I don’t walk around like that, but who knows.
I would hope they would tell me if it’s something major, if I am diabetic or have hypertension, would they let that go all weekend? I’m so agitated. I hope it’s just my vitamin D.

JLeslie's avatar

@DigitalBlue If it was your sugars they would tell you right away. They would have asked you if you fasted when they talked to you.

If your blood pressure comes back down they usually won’t make a huge deal of it. Those automatic cuffs almost always have trouble on my arm. I usually have to have them stop and start three or four times. One time before I had a procedure done as I was just about to pass out I told the nurse it was squeezing my arm off. Thank goodness I was awake enough. The thing just kept squeezing and squeezing and did not deflate to read the pressure. However, it is possible he wants to dicuss your BP and discuss BP medicine. If your thyroid is off, I personally (this is not medical advice) would not take BP medicine and take the thyroid medicine. They wanted to put me on BP medicine because I had 4 high BP readings and since I refuse to believe that things go wrong in my body for no reason I didn’t go along and I had asked for a thyroid test, which came back so whacked that there was no question about that. My blood pressure went down within weeks after starting the medicine. But, I have never had white coat syndrome, and had never had high blood pressure before, or not until that week of high readings.

If they call you back to the office for just vitamin D I would be pissed. But, I get pissed a lot. I hate being robbed by doctors. How difficult would it be to tell you over the phone that he is writing you a prescription for vitamin D. Same if you are iron anemic, or something similar.

If your electrolytes were way off they would have told you on the phone I think also.

Other things he tested for were liver function, iron, and a few others within those panels he did.

So that leaves thyroid or an autoimmune marker. I have had a few autoimmune things come up high, and once I treated my chronic infection with mega antibiotics they came back down. So, I am wary of everything. But, it wasn’t very high numbers and it wasn’t for things like lupus.

No matter what I don’t think you should have to come back in. If you do, God forbid, have some sort of result that would be a little scary I would hope he would refer you to a specialist. There again why do you need to see him in his office to be told you need a specialist?

Sorry to be so negative, I usually assume the worst about doctor, and for that reason I believe there is nothing scary wrong with you, I just think he is making money on another visit. But, I am not very rational when it somes to doctors.

DigitalBlue's avatar

No, I understand, I tend to feel the same way. But, I think anyone that has had the runaround that comes with complex illness or anything that isn’t easily diagnosed with a simple lab test, is probably familiar with that skepticism. I want to trust my doctor, but very few doctors have ever done anything good for my trust.
I would be willing to go on BP meds, with the understanding that it be short term, if it would prevent interference with my surgery. I’ve already pulled all strings available to me to make this happen, rescheduling is the absolute last thing I want to have to do.
Part of me wants it to be vitamin D because it’s easy, but the other part of me would be pissed along with you. I do think my thyroid is what will be off, just a gut feeling.

JLeslie's avatar

I think it is your thyroid too. But, that would mean he should have called in a prescription for you so you could start right away or he is referring you to a specialist. Wouldn’t it? Now I am just very curious what he is going to say on Monday.

For your surgery I can understand why you would take the BP meds temporarily. Makes sense. When is your surgery? Is there an outside chance that if it is your thyroid that you would want to put off your surgery? To see if things correct with proper thyroid treatment.

DigitalBlue's avatar

No, not at all, I do not want to have to cancel or postpone. The majority of the cost of surgery is out of pocket, since the surgeon is out of network, so my insurance is basically only paying for the hospital. And I have already paid money toward that, including securing my surgery date of the 29th, plus made all of my travel arrangements, my mother took off from work to go with me… having to change that would be a nightmare. It was difficult to pull it all together in the first place.

I wish I had the option of approaching this therapeutically, I detest taking medications that suppress symptoms without doing much or anything to address the underlying cause, generally I refuse to do that, but in this case I want whatever option will make me surgery-ready the fastest.

JLeslie's avatar

If it is your thyroid starting medication right away might very well bring down your blood pressure in just a couple weeks. The thyroid hormones don’t level off for 6–8 weeks, but some of the symptoms you are experience if related to thyroid could easily get much better within a few weeks.

DigitalBlue's avatar

That is my hope. But I have a feeling it has thrown me in the other direction, I think that I am likely hyper, not hypo.
Now that I’m aware of it, I do have a sense of like a buzzing under my skin, and that I am not sleeping deeply, and also my heart does quick flutters every now and then. I have a history of anxiety, so I think that was easy to ignore, but now paying attention to my body I think it’s entirely plausible that it’s my thyroid. Which would also explain why I am feeling more anxious, even though my anxiety has been really well controlled for about 8 months.
I also read that nodular goiters are more likely to cause hyperthyroidism. That may not be what caused the goiter, but that the goiter itself is likely to trigger an overproduction of hormones. Now, that’s only Dr. Google, but I have a feeling that’s one realistic possibility for how this is going to go down on Monday, and I am trying to mentally prepare, since I think the treatment for this may be slightly more complex and may take a little longer. If that is the case, then I am open to blood pressure medication, or whatever.

Obviously, this is all a lot of guessing until we really know what is going on, but it’s hard not to want to pick it apart since they didn’t give me anything for peace of mind.

cazzie's avatar

@DigitalBlue that does sound like the sensation of being hyper. When I am hyper, I feel more emotional and shaky and I don’t feel like I have control of my body. My loved ones tell me that they can actually feel me ‘quaking’ when they hug me.
‘Hot nodules’ cause hyper thyroid activity. You need to have an RAI uptake test and have your antibodies test. Your doctor’s delays are very very worrying. Put the press on him or the doctors that you are going to see for your surgery. MAKE NOISE about your concern. What I have learned, as a thyroid disease warrior, is that WE have to be our own advocate. Don’t rely on the numbers on a sheet or the ‘theory’ of a doctor. Speak up and take a very vocal role in your own care.
Talk to the doctors about beta blockers just for the short term. I wish you all the very best for your health. Good luck.

DigitalBlue's avatar

Thank you. I will see what happens at my appointment on Monday and then, yes, definitely will find someone that will treat this aggressively.

I really only ever seem to develop ailments that doctors ignore until they are completely out of control.

DigitalBlue's avatar

It’s probably lucky that we even found it, like I said, I was just in to see him over the winter and everything came back good. There was no goiter that I know of, he didn’t feel anything when he felt my neck at that appointment, my blood work was all healthy, etc. I have been having a lot of symptoms long term, I have been sort of waiting it out to see how much would improve after my surgery. (I’m having surgery with a specialist to remove stage 4 endometriosis, I have a lot of complications from scarring, bowel fused to uterus/ovaries adhered to pelvic wall/bladder adhered to uterus/extrapelvic organ involvement).

I know that a lot of my symptoms are directly from that. I have IBS, I have chronic pain, back ache, fatigue, nausea, all of these things that can be attributed to what is going on in my guts.
But I also had a lot of subtle symptoms that can’t be blamed on my endometriosis, and that is what I went in to discuss with him. Joint pain, vertigo, a seemingly sudden skin reaction to damn near everything (which I’ve posted about here, before) and other strange stuff that pops up. Nothing that is severe on its own, but all together it starts to form a big picture that suggests that something isn’t right. And people love to say “oh, welcome to getting older,” but I’m 31 and I eat well and I exercise and I take care of myself, I shouldn’t be struggling to get out of bed or to put weight on my joints some days and be fine other days. That doesn’t sound right to me.

So, I assumed this was something that I was going to have to continue exploring and I thought that I might get the ball rolling before surgery just to see where it might lead me, plus I wanted to let my family doctor in on my plans to see the specialist. I had no idea they were going to find this, completely caught me off guard. I’m glad I went, now, but I feel like I was completely unprepared to deal with something like this with such terrible timing.

JLeslie's avatar

Certainly could be hyperthyroid. Many of your symptoms fit. Having been both (medication induced hyper) I will take hypo any day. Hyperthyroid feels so awful to me. Nodules can form with both hyper and hypo.

Did your GP ever have you get a thyroid ultrasound before? Had he felt your thyroid before?

cazzie's avatar

Our hormones are so very intertwined to the different systems in our bodies. Your thyroid stimulating hormone comes from the part of the brain that also controls your ovulation and periods. People with high TSH have heavier periods and sometimes more frequent. I don’t know if it is also related to PCOS, but they should do a study. It also has a lot to do with our bone mass and this is why I think vitamin D is so important for people who have Thyroid disease or other hormone problems.

My TSH was untraceable when I was first diagnosed and my periods had stopped for 6 months. I had an almost impossible time conceiving my child and there wasn’t much the doctors could do to understand what was going on. Because I had been diagnosed by that time and on medication and my levels looked perfectly fine. ‘Keep trying’ was their response, so after years, I finally fell pregnant with my little man.

But like you said, one thing at a time, but I think you will find that the problems you are describing are related.

JLeslie's avatar

@cazzie I always say everything counts. Every symptom counts. It’s like a puzzle, and the pieces are there and someone needs to fit them together. It would be nice if the doctors could fit them together faster or at all for that matter. Do you ever find it odd that so many women have similar experiences and yet still it seems like doctors are dealing with it for the first time?

Vitamin D and the parathyroid are supposedly intimately related. I know very little about the parathyroid though. I think vitamin D is related to many things.

cazzie's avatar

My GP here was freaked out completely at my Graves disease. She doesn’t know anything about it and wants me to only be treating at the hospital by a specialist. Granted, I do have a very odd and funky version of it, but it is only odd and funky because of my LACK of problems with it. She just sees the lab results and panics. They can’t figure out how I go into remission for years at a time.

I’ve been arguing for years about my treatment and fighting to retain my thyroid and not have it burnt out with RAI. I don’t think they know enough about these diseases and nobody seems interested in doing good, proper studies about it. I’m an anomaly because I have Graves and my thyroid hasn’t been burnt out. My levels of antibodies hasn’t changed since I was first diagnosed, so they can’t work out how my body is fighting the antibodies when I go into remission. I wish I knew. There might be a cure in it or at least a better treatment. .

JLeslie's avatar

@cazzie I think it’s good your GP sends you to the specialist. Too many GP’s think they are handeling a situation when they aren’t. Doctors don’t realize for some reason that many patients suffer in silence for months or years inbetween visits, because we feel like we are getting nowhere. Actually, this happens with specialists too. Most people I know with hard to diagnose and hard to treat chronic illness are not hypochondriacs (although many people think they are) they actually avoid the doctor when they still feel like crap because they don’t believe going will do any good. I think a lot of doctors perceive our absence between visits as we are doing ok or better.

I think pharma must love current treatments. If you are hypo you take a drug every day. If you are hyper you take a drug every day, or they kill or remove your thyroid and then you take a drug every day.

I have a friend who was first diagnoses hypothyroid, then she was hyper she bounced around, and now is off meds. She usually hovers between nornal and a little hyper. Her doctor was baffled. Still is I would guess.

cazzie's avatar

From what I understand of the system, if the parathyroid glands malfunction there are calcium issues, which make me jump to a link with Vitamin D. Oh…look, I remember correctly…. links:

Again, there needs to be research on these issues. They know it happens, but it is a chicken and egg situation. Too many unanswered questions.

DigitalBlue's avatar

My doctor always feels my neck when I go in, but I have never had a thyroid ultrasound before. I was very stressed out at first, but now that Monday is creeping up, I just feel excited to know what it is so that I can deal with it.

I am trying to get pregnant, so the fertility aspect is extremely important to me. So far, luckily, despite everything going on, I have been fortunate to have a very predictable 28 day cycle, but given the chaos going on around my pelvic organs, my ovaries live in a war zone and still keep chugging along (which I am very happy about, naturally.) Maybe my thyroid was feeling left out and my endocrine system is just a show off. ;)

My fertility concerns were brushed under the rug, as well, for many years. I think a lot of this happened because I was uninsured for a long time, so I became accustomed to only going to doctors when absolutely necessary and I think that doctors treat you differently when you are uninsured. Anything that doesn’t set off alarm bells and whistles gets brushed off. Maybe it’s always like that, regardless of insurance status, but my experience is that doctors don’t take me seriously when I don’t have insurance.

DigitalBlue's avatar

@JLeslie I like what you said about every piece fitting like a puzzle, I agree with that so very much, I wish more doctors took that approach. I dislike that so many doctors seem to want to break up symptoms into individual problems or individual diagnoses or individual specialists. I always feel like all of these symptoms are happening within my own body, I wish they would treat it as such. I’m not a list of lab work.

@cazzie I suspect you are right about them not understanding this disease well enough, I think that most diseases that fall under this umbrella with endocrine and autoimmune and the like are poorly understood overall and that leaves treatment options lacking. I haven’t even begun to deal with thyroid stuff, but I had already delved into all of this after learning how terribly misunderstood endometriosis is and how that affects treatment, which leaves anyone with complex or advanced disease without any effective options. But, if doctors can’t figure it out, they seem to be dismissive or want to tell you that it is all in your head. I think that our intimate understanding of our own personal bodies should be considered an important part of diagnosis and treatment. I know that doctors are trained professionals, but you can’t be a trained professional in knowing what a person is feeling and experiencing within their own skin.

JLeslie's avatar

@DigitalBlue My rheumatoligist after treating me said that after having me as a patient he suspects infertility in the future should also be studied as a rheumatological condition in some instances.

I always had insurance and my experience was no better, I have a feeling @cazzie would say the same, but I can’t speak for her. She is right about a lack of motivation or understanding in the medical community regarding thyroid.

I also was adhered and a mess inside. My left ovary and tub were all balled up and adhered to my colon. Added adhesions in many other places. I don’t think that was related to my thyroid though.

DigitalBlue's avatar

I don’t think they are directly related, I was just making a joke, but there does seem to be a link between the two. I just listened to a reproductive immunologist who spoke at the EFA convention say that thyroid, specifically Hashimoto’s, occurred with endo in some statistically significant number of patients. I don’t remember, because it didn’t apply to me, but I do remember that he made that link and I know he is not the first to make that observation. That same speaker was discussing the autoimmune component of infertility in endo cases, specifically in asymptomatic endo, I will look it up for you if you’re interested in watching. I had posted it on my Facebook because I thought it was fascinating.

I know there are other links between endo & autoimmune stuff. There is a lot of research, new research, well supported research, to suggest that our understanding of the disease is completely wrong. It would not surprise me in the least if that turned out to be true of many of these diseases.
This is why I have opted for the specialist surgeon, because their recurrence rate is something incredibly low, like 5%, and they deal almost exclusively with complex cases like mine or yours. I want to say the likelihood of recurrence with traditional surgical methods is closer to 50–60%, and that is on all patients, not just deep disease or extensive bowel/bladder or extrapelvic involvement.
I don’t think that we are giving any of these types of diseases the research they deserve, and I have a sneaking suspicion that they will continue to rise over time. Just my opinion.

JLeslie's avatar

Interesting. The doctor believed my adhesions to be from long standing infection, and in fact that had been my head knocking against a brick wall cry for years, but doctors didn’t buy it. Except for two. My rheumatoligist and my GYN in NY.

DigitalBlue's avatar

Okay. I do have a goiter, but no nodules, the right side was just more swollen than the left. Vitamin D was 13 and my sed rate was 27 (normally I have normal-high WBC and high sedimentation rate, but my WBC was 7.1 this time). Everything else was “great” as always.

Thyroxine Free 1.12
TSH w/out Reflex 2.72
T4 8.1
T Uptake 34.5

Juels's avatar

What about the thyroid antibody?

DigitalBlue's avatar

He didn’t test that. I assume I’ll have to see an endocrinologist after my surgery.

JLeslie's avatar

Your D is extremely low! Did he give you a perscription for that?

My sed rate used to run a little high for many years, and then after my mega antibiotics it went down forever more. I haven’t had it tested in 8 years, but it was normal for many years after the medicine.

What about T3?? That to me is more important than the antibodies. Is T3 and T uptake synonomous? I don’t know the answer maybe @cazzie does.

DigitalBlue's avatar

I thought the T uptake was the same as t3, but that shows how clueless I am. He did give me a script for the vitamin D, he said I may find that makes all the difference for me, which seems possible.

JLeslie's avatar

I am pretty annoyed he has never checked your D before.

I can’t for the life of me understand why you needed to see him again for those test results.

I hope you do see an endocrinologist. Did your ultrasound come back nornal?

DigitalBlue's avatar

Ultrasound hadn’t come in, but he called and I have a goiter but no masses. Originally he has said he felt a mass. I think they had me come in to check my blood pressure again because it was very erratic that day. It was perfect today, so who knows, must have really had a bout of anxiety last week. I guess. I do have some stress lately so it isn’t completely unrealistic. I really expected it to be my thyroid, it made sense.

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