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UPDATE: thyroid issues. - 2/22/2014 12:50:11 AM

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So I finally got to the endocrinologist. Intially, he didn't seem to like my decision not to have my thyroid removed at this time, but he now understands my reasoning.

So I see him again on Tuesday, to further discuss moving forward with my thyroid and diabetes. We are going to do an uptake on my thyroid to determine whether the nodule is active or inactive. If the nodule is "hot," we wil know it is active. The good news there is that "hot" nodules are never malignant. If it is "cold" then another biopsy is in order.

The blood results show it to be "mildly" over active, although as was discussed in the other thread, that is mildly on the standard scale. It could be more than mild for me. Regardless, after the uptake we will begin thyroid supression medication and if my symptoms go away (the hot flashes, night sweats, increased anxiety, etc.), then we know it is my thyroid causing the problems. If they don't go away, we will have to startt looking for other causes.

In any case, I feel cautiously optimistic, and I'm relieved that finally something is being done. After all, slow progress is still progress.

RE: UPDATE: thyroid issues. - 2/22/2014 1:22:06 AM

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RE: UPDATE: thyroid issues. - 2/22/2014 4:51:32 AM

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Here it is to being hot...also ask about a diet that you can have that does affect the thyroid...Someone posted it around here (I think it is in Off Topic about the Kale)

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RE: UPDATE: thyroid issues. - 2/22/2014 5:00:14 AM

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I read that thread, but because mine is over active, not under, those foods can actually benefit me.

On Tuesday, I intend to talk to him about a nutrionist/dietcian and going to diabetes education classes. I did both when I was first diagnosed with diabetes, but a refresher would be nice. Plus I have other digestive issues that would be beneficial to talk with nutrionist about.

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RE: UPDATE: thyroid issues. - 2/22/2014 5:26:11 AM

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In case you are taking medication, I would still be a bit careful with the foods, as it might throw the readings a bit off scale. The damned thing about the thyroid is that it is really so unpredictable.

Have you discussed the thyroid issue also with your OB Gyn? They tend to be really switched on (a lot more than most GPs and sometimes endos), as they are aware how much the thyroid influences the female reproductive organs and hormone production.

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RE: UPDATE: thyroid issues. - 2/22/2014 5:39:28 AM

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I have been after my Mom that we need to see a dietitian as well. I drink Arizona diet green tea with ginseng and honey extract in it (1 glass a day)and the rest of the time water unless I grab a Diet Dew at the store (At times I need caffeine to wake up).

The doctor has me back down to 150 mcg a day on my thyroid medicine. I was taking 250, then 200...The trick back then was I was not taking my meds...I would forget. I force myself to take my meds now (including krill oil).

Mom's nodules are not affecting her...she will go to the endo once a year to get it checked out. We do the lab and the ultrasound on the same day because his office is over 75 miles away and we want to get everything done in one day (especially with these gas prices).

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RE: UPDATE: thyroid issues. - 2/22/2014 7:30:28 AM

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I can't start the thyroid meds until after the uptake, because it will mess up the results. I'm hoping I can schedule the test within a couple days of getting the script. Hopefully, I will be able to schedule it for the same day as PT, starting right before. I know they take a reading, then give you the pill, and then its like an hour or so wait for the second reading. It would be really convenient if I could do the PT during that wait time

I actually don't have an OB/GYN at the moment. Last one I went to was at planned parenthood when I had a yeast infection. He was ok, but definitely would not consider him clued in on stuff. I had mentioned the hot flashes and sweats and thyroid nodule, but he didn't have anything to say. My insurance was different then and I didn't have a lot of options for who to see. Right now, I am seeing so many different doctors, adding another is just too much right now. I have my GP, the endo, orthopedist, gastroenterologist, podiatrist and urologist. I can only handle so much info at a time, lol. I would have considered an OB/GYN when I was looking for the 2nd opinion had I thought of it. Insurance wouldn't consider an OB/GYN a qualifed second opinion, but I don't need referrals for OB/GYN and it would have been just a regular visit with mention of the thyroid issue. At this point, I don't want to have two different doctors treating me for the same thing and I'm comfortable with the plan moving forward with the uptake and then supression medication. If that doesn't relieve the symptoms, I might try the gyno.

I am actually hoping the nodule is hot so I don't have to do another biopsy. That was horrible, like lipsuction on your throat.

(in reply to ShaharThorne)

RE: UPDATE: thyroid issues. - 2/22/2014 9:54:05 AM

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The gyno might not treat the problem but possibly would connect with the endo and give input.

I've been pushing for a biopsy of several cold nodules and keep getting "we're not worried", which has be a bit baffled, on the other hand, I had them for several years now without a problem.

When I mentioned to my gyno (years ago) super painful periods, he decided to do a hormone check and saw that I am on a synthyroid, he explained that it's important for him to know as it might influence the readings, he was also the one who told me that the ovarian tumor was most likely linked to the thyroid problem, when I mentioned it to a GP and he laughed and said "Your ovaries aren't in your neck!" I decided it's not a doctor I would trust with more than handing me a tissue and a band aid...

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RE: UPDATE: thyroid issues. - 2/22/2014 10:35:54 AM

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This time I have advice for you. Push for the biopsy. Just because they were benign in the past doesn't mean they still are. Especially if they are growing. That's how this whole thing started with me, the lump was found, then ultrasound and it keeps growing. Up to 3.42 cm now. That's considered large.

As for a gyno working with the endo, of course. But all my doctors know all the medications I get from whichever. My GP gave me a script for ibuprofen 600mg (I know, that's OTC in europe and dirt cheap), so my podiatrist didn't write me a new one for the plantar fasciitis. I'm very diligent about making sure they all know who prescribes what. Not just because I worry about conflicts, because my pharmacist handles that ultimately, but because I also get narcotic pain killers and I don't want any of them to think I'm getting multiple narcotic scripts since I have so many doctors. I figure if I am completely transparent about all my meds, ther is less likely to be hassles.

I am very picky about my doctors and I don't really give second chances on stupid shit. That's why with my old insurance (straight medicaid) I had so many problems with doctors. One was a drunk (smelles alchol on his breath at an appointment), the othe was more concerned about her botox sales, the clinics are like assembly lines or have residents who don't know shit. The one good one I found retired, lol. So I was really glad to be able to go back to my old primary who is a DO. I like the fact that he looks at the whole picture. He is the top of the pyramid with all the records and then the specialists are the branches for specific things.

I've never seen the sense in trying to let the GP handle everything, especially with something as complex as a thyroid issue.

(in reply to LadyConstanze)

RE: UPDATE: thyroid issues. - 2/22/2014 10:44:56 AM

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In the UK the GPs try to handle everything, it's a budget thing, but oddly even the endo isn't concerned about the nodules... I handed in a report from an LA endo with the scan and the strong recommendation to biopsy, I make sure I bring it up every time, but thyroid issues here tend to be rarer than in other countries, and docs are just not as switched on as they should be. At least I have seen a specialist (once I really raised hell) who is at least willing to look at stuff docs from other countries recommend, like the D and thyroid link. I usually have a bunch of stuff (Mayo clinic etc.) and hand it over, great kudos that he actually informs himself and is willing to reconsider...

I often feel like I'm fighting windmills

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RE: UPDATE: thyroid issues. - 2/22/2014 1:06:16 PM

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Perhaps it is their not being tuned into thyroid issues that makes them more rare?

Why did the LA endo recommend the biopsy? Are the nodules increasing in size, quantity?

Can you insist he do it or come back to LA and have it done?

I know how you feel. Before the medicaid expansion, there wasn't even a specialist for me to see. The GP who was more interested in selling botox was a pain in the ass when I insisted she write the script for the last ultrasound in september. But I'm glad I insisted, because the lump had increased in size from the last one.

Perhaps you should consider having the rest of your thyroid removed. I know since you've been posting on the issue, I have much different thought on having mine removed, even though I'm still taking the long road and hoping I don't have to take that route. Still if at the end of this road, I have to, I'm much more comfortable with the idea. Thank you for that.

Now go insist on your own biopsy!

(in reply to LadyConstanze)

RE: UPDATE: thyroid issues. - 2/22/2014 1:29:31 PM

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The thing is, one thyroid surgery is fine, I'd be happy to have the rest of mine removed as it would make the supplement easier, but due to internal scar tissue, there is a fairly high chance that I might have damaged vocal chords or not be able to talk at all - which is not something I decide lightly as it will have quite an impact on my life, work, social interactions, everything. Could I go back, I would insist they take the whole thing out, but then hindsight 20/20....

I mention it every time, I get told every time not to worry... The thing is I can get it done outside the UK everywhere, but that will be out of my own pocket, since I'm paying into the system, it's a bit of a pisser and medical costs aren't cheap and throwing a couple of K out of your own pocket at something that should be covered really annoys me, it's not like we have money to burn. When it comes to thyroid stuff, the UK really seems to be decades behind. They're trying to tell me that because the nodules are cold there is no reason to worry, it's a little bit like "Hold on, everywhere else on the planet they say that is when you worry..."
I might just get it done next time I'm in Germany or France, as the medical systems there are pretty good and a lot cheaper than in the US, however the nodules can change, so it would be something I would have to do repeatedly. To be honest, I'm not too worried about them, it's not very often that nodules actually go BANG, it would just be a bit of additional peace of mind. I really want them to focus on the whole Vitamin D stuff right now (it was pretty hard to get them to test for that here) and I rather let them do all the required tests before I start being stroppy and demand the biopsy. The explanation I got from non UK docs is that the nodules are due to not being correctly medicated and are simply a part of having hashimoto's, pretty standard in most people with that problem and in almost every case harmless. That's why I think I can afford to be patient.

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(in reply to LafayetteLady)

RE: UPDATE: thyroid issues. - 2/22/2014 4:15:30 PM

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Ah, I do remember now about the risks of a second surgery. Yea, my endo was very specific regarding the hot and cold. I even repeated it back to make sure I had it correct. That's pretty fucked up that the UK doctors think it is reversed.

I'm sure you have good doctors who know what they are talking about (outside your weird UK docs). I know what a pain the biopsies are, but when was the last one? As you said, they can change. Maybe these other more informed doctors can recommend a schedule of sorts for the biopsies, say every three to five years. My understanding is that thyroid cancer progresses very slowly, so there could be a reasonable time frame that you could utilize that keeps watch and is still timely enough, God forbid, the nodules change.

I know that even if my nodule is hot, I'm looking at bi-annual ultrasounds since it seems to keep growing. And each new radiology report recommends biopsy since it has grown since the previous. So I'm fairly certain at tthis point I will decide to have oit removed within the next two years if it keeps growing. Apparently, it seems after each ultrsound we could do a new uptake to make sure its still hot (I'm assuming best case here), which wouuld negate the need for biopsy, but that would be an awful lot of radiation. I like green but not the me glowing in the dark kind, lol.

I do agree that it sucks to have to pay out of pocket for something that should be covered. If I remember, don't you have some international thing that gives you coverage all over at least europe?

(in reply to LadyConstanze)

RE: UPDATE: thyroid issues. - 2/22/2014 4:37:22 PM

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I used to have a private health insurance from Germany, but the problem was it didn't help much here, as they paid out for each action, say (just an example) if I went to a dentist here, they would have to detail what they did, each injection, how long the process took, what kind of filling, etc. The bills I got, despite asking for itemized bills was "filling" so I only got refunded the price for the filling without anything else (no drilling, injection, etc.), it was such a PITA that I figured why spend several hundred a month on that when I only get a fraction back and let it go...

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RE: UPDATE: thyroid issues. - 2/22/2014 7:55:27 PM

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I can understand that. My insurance covers the biopsy completely
I don't even get EOB's. But I'm sure you can shop around and find one tto do it at a reasonable cost. I'm sure way cheaper than here. I shudder to think what my medical care costs. I know all the meds I used to be on ran a grand a month. I'm sure I will be back in that range or higher once all the various test results are in. I would have to make more than a hundred grand a year to afford my medical costs out of pocket.

(in reply to LadyConstanze)

RE: UPDATE: thyroid issues. - 2/22/2014 9:01:37 PM

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LL- I know a really good endo in NJ.
If you're ever in need, I'd be happy to pass along his info on the other side. Just message me :)

My goiter popped up seemingly overnight shortly after my car accident last year.
Also after going on a stupid juice diet like an idiot.
and also after engaging in some breath play in a rather irresponsible manner (we don't do it anymore cause he's afraid he caused my goiter).

Since, I've had THREE ultrasounds, a biopsy, bloodwork every 3 months. I fully expect a Hashi's diagnosis to follow. I have so many nodules developing and I go back and forth all over the place with my levels. Its so so so annoying. Due for another biopsy soon.

Thyroids are such a pain in the ass! I hope you have some answers soon and start feeling better.

(in reply to LafayetteLady)

RE: UPDATE: thyroid issues. - 2/22/2014 10:36:05 PM

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Considering my insurance couldn't locate. Second endo in the plan for a second opinion, I doubt yours takes my insurance, lol. Right now I'm happy with the endo I have. God forbid the uptake or biopsy comes back in an unwanted result, I will probably contact you for his name. A second opinion would have been nice, but I had already decided not to have the surgery at this time, so the second opinion didn't really matter. If I need to revisit that possibility though, I will want a second opinion. I just pray I don't need it. Is the endo in northern NJ?

I've had 3 ultrasounds on my thyroid (several others on different body parts, lol), one biopsy and. They take a minimum of 4 vials of blood from me every month anyway. This last time they took EIGHT!

I do have a second nodule on the other side, but apparently its small and not growing. I don't like the word "goiter." It sounds horrible, lol.

A lot of people tend to think my reasoning is a bit screwed up, but my main symptom that MUST go is these hot flashes and night sweat (which like morning sickness are misnamed). At this point I honestly don't care what is wrong, just get rid of this sweating! I sleep with my bedroom windows open AND. A window fan on even if it is below ten degrees. Otherwise, I'm too hot to sleep. Today it was beautiful; a heat wave of the mid 40s', lol. I have the windows open, the ceiling fan on and I'm literally dripping with perspiration. I don't have a washer/dryer and can't afford to change my clothes six times a day and create that much laundry. I know it sounds gross, but its either shower and put on clean clothes, or don't shower because I'm just going to put the sweaty clothes back on. Lucky for me, I don't go out often. I do shower and put on clean clothes for that, lol. But its so damn uncomfortable feeling likke I'm sitting in one hundred degree heat with no A/C all the time. Summer is worse because even with the A/C I can't get my house cool enough to be comfortable.

So above all else, I'm hoping that this thyroid thing solves that problem. Not feeling like I'm burning up all the time would improve my sleep, reduce my agitation and anxiety, so it really is major.

Have you considered having your thyroid removed? According to my endo (and LC) once the thyroid is gone, levels won't flucuate because it will be steady through replacement meds. Honestly, I sometimmes imagine I can feel my thyroid should out the hormones that are messing everything up.

(in reply to shiftyw)

RE: UPDATE: thyroid issues. - 2/23/2014 8:40:41 AM

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He is in Northern NJ, Morristown to be exact.

I have considered having my thyroid removed, but at this point, in order for it to be not be considered elective, I have to wait for it to get bigger or get cancerous.

My mom had hers removed, because she had thyroid cancer and has had nothing but issues, although now a year after surgery she seems much better, she had a really rare complication with her parathyroid- so thats why recovery has been so hard for her. My mom's levels fluctuate all over still, but that is a medication issue with the parathyroids.

I can tell you, my stupid thyroid cranks it into overgear almost every single month during my period. I mean like clockwork, I drop five pounds over night, I'm never hungry, I feel really "up"- then right after both my thyroid and my iron levels just crash and I generally end up so tired and terrible feeling its so stupid.

Frankly- its really messing with my weight. I've been on weight watchers since I was 16. I got to goal weight, 1 time. I gained it all back in a matter of 2 months- despite exercise and diet. If I lose .5 a lb a week I'm extatic. Its just a battle I'm so tired of fighting with my body, that if I could at this point, I'd get weight loss surgery in a blink of an eye, but because of my thyroid, I can't.

I have actually had it up to here with that stupid little organ.

ETA- while I was just diagnosed last year they all suspect I have had thyroid issues for a while, just the stress after the accident seemed to really bring them too the surface.

< Message edited by shiftyw -- 2/23/2014 8:49:00 AM >

(in reply to LafayetteLady)

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