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Thyroid and Blood Pressure Questions

Discussion in 'Thyroid Dysfunction' started by zoe.a.m., Sep 3, 2010.

  1. taniaaust1

    taniaaust1 Senior Member

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    Soxan.. i hope you push for a biopsy. As another said, thyriod cancer is VERY COMMON in our illness. Ive heard of some CFS/ME specialists finding it in their patients at a rate of 17%. (I think i recently heard of one finding it at higher rates then that). You need to make sure this is completely ruled out.
    ......

    I cant remember who it was but someone here mentioned weight gain for no reason and cholestrol going up and food issues. Make sure you've been tested for insulin resistance if those things are going on by a 2 hr insulin tolerance test. Those symptoms are what my insulin issues have caused (Ive been putting on weight from what it appears to be from drinking cordial, due to insulin issues). The kind of weight gain which goes onto the tummy.
     
  2. taniaaust1

    taniaaust1 Senior Member

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    IF the amenorrhea isnt being caused by your thyriod or being underweight (thryiod issue can cause that problem), if its not the thryiod you need to then get checked for polycystic ovulation syndrome PCOS which is the most common cause of amenorrhea and infertility in women. This can be done via hormone tests (thou ive found that you need to see a gynocologist as dont rely on a GP to be able to know when ratios of hormones are screwed so they can miss PCOS as they dont know enough about hormones) along with having your doctor send you for a ultrasound on your ovaries to look for the excess developed follicles.

    Once again i recommend a gynocologist as I had a lab technician misread my results and missed all the developed follicles which can be clearly seen on my ultrasound. (same stupid technician who also missed seeing a torn tendon for my shoulder, i think he needs glasses).

    With PCOS if this is what in fact is causing the amenorrhea then you extremely likely also have insulin issues as nearly all with PCOS have/get insulin resistance or end up with diabetes. (something like 80-90% with PCOS do get diabetes or insulin issues before they are 40 years old)

    i need to get off your thread lol, as the more i look at it, the more i see here to respond to.

    best luck
     
  3. taniaaust1

    taniaaust1 Senior Member

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    See i told you i need to get off your thread :p

    If that isnt something to do with your thyriod, it could be damage being done to your body related to to the CFS/ME itself. Some of us with CFS/ME including myself get our blood pressure affected and going HIGH!! These high BP readings can still happen while one is also having issues such as POTS.

    Im currently trying to work out if those who the CFS/ME have affected in this way are more damaged?? (I used to have extremely severe CFS/ME). My BP during the early years of it when my symptoms seemed worst was low... but with time.. my autonomic nervous system has been damaged and now it swings very high and is high most of the time (except during the night while Im asleep).

    Try to work out if your is swinging both ways.. the high BP may be just an orthostatic symptom with it going low while asleep (i had 24 hr monitoring done which picked that up... mine goes quite low while asleep. This is something those who have normal high BP, it doesnt do). Theda Myint is another who gets the high BP with the CFS/ME http://www.watoday.com.au/wa-news/donations-help-theda-fight-chronic-illness-20100310-pyzw.html (she has both the POTS and the swinging BP like i do)

    Thirdly there is a subgroup of CFS/ME who get syndrome X .... with this you get steady high BP (rather then swinging BP and high when upright), insulin issues, obesity or weight issues and high cholestrol. (whether the whole insulin issue triggers off the rest of the symptoms, im not sure, it may).

    Those who get the high BP with this illlness are no where near as common as those who get the low BP http://wwcoco.com/cfids/bernesx.html (86% get the low BP) , so we kind of are in a minority group here.. but as i said, i did used to have very low BP but that changed so now my body is dysregulated. (you need to make sure your issue is high and not dysregulated BP appearing like you have high as if one took drugs to lower BP due to thinking it was classical high BP and it was in fact dysregulated/autonomic issue BP, you may end up with way way too low BP at night and it coulld drop to a dangerous level).

    Ignore all ive said here.. until you find out if your thyriod is being an issue and if that is causing the issue or not. If not.. I suggest to come back to this post.
     
  4. Julia Rachel

    Julia Rachel

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    Heart Palpitations are consistent with Hyperthyroidism in some cases. There are MANY forms of thyroid disease. One of the leading experts in understanding the role of T-3 absorption, Dr. Boris Catz of Beverly Hills, CA came up with a simple way of self diagnosing Hashimotos Thyroiditis, which can actually fluxuate between hypo and hyper thyroidism left unchecked and is dangerous. Hold your hands palms facing your face about 12 inches from your face, fingers straight up and tight together. A short fifth digit is a classic sign of hypothyroidism or thyroid disease. There are 3 lines on your fingers, one at the base, one at the knuckle joint, then one at the top of the finger. If your pinky finger falls short of the top line of your ring finger (4th digit), then you have Hashimotos. Only a GOOD and licensend Endocrinologist is capable of diagnosing and treating you. Urgent care or MD's do not have the knowledge to help you. Also, Thyroid disease is heriditary. So if you have no known family members with thyroid disease, chances are this is not the problem. It has to be genetic, but can skip a generation or be an aunt or grandmother or even great aunt, cousin, etc....Please keep us posted! BTW/..my pinky barely reaches my 2nd line on my ring finger and I have calcifying goiters. pre-cancer. Progressive Endocrinology promotes not only a PLETHORA of thyroid blood panels but also an ultrasound of the thyroid. The sooner you get to an endo the better, but l;uckily if yout Thyroid is off, treatment efficacy is quick....it takes about 6-8 weeks to start to feel better and within a year almost all is 100% resolved.
     
  5. taniaaust1

    taniaaust1 Senior Member

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    Very interesting.. maybe the short finger increases genetic risk but i cant see how having that could mean that one definately has a thyriod issue. I have hypothyriodism in my family (2-3 family members, im not sure thou if i carry the gene for it or not), i myself dont have it (ive had a lot of tests there)... but just checked my fingers.. my fifth digit is way short. I have long fingernails and even my long fingernails are not coming up to that line!! (im going to be comparing my hands now, uptil now i never realised just how short my little fingers are)
     
  6. Julia Rachel

    Julia Rachel

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    The short fifth finger does not increase genetic risk. The gene is already inherent. This symptom It was a noticeable and recorded deformity in thousands of patients studied at Oxford and in the United States over the past 50+ years, noticed by Dr. Catz who published a paper on the finding. In all cases of the short fifth digit, Hashimotos Thyroiditis was found.
     
  7. Julia Rachel

    Julia Rachel

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    I would get re-checked by an endocrinologist for thyroid disease if I were you. Better safe than sorry since you have the short 5th digit and have familial thyroid issues. If you have CFIDS, thyroid disruptions can make things MUCH worse. Also...the basic TSh and T-4 panels run will show normal results, even with severe thyroid problems.. Reverse T-3, Reverse T-4, etc are needed as well other blood tets as well as ultrasounds to detect disease. Many endo's are not even aware of the T-3 vs. T-4 absorption issues, which is common with Hashimotos Thyroiditis. Endocriniology is an intense science and we need better trained Endocrine Specialists. The fatigue from an underactive thyroid alone can cause disability as well as memory loss and confusion, muscle and joint pain, scaly elbows, heart palpitations, diabetes (type 1 &2), blood pressure problems, etc.....the thyroid gland controls our every cell of our bodies......
     
  8. soxfan

    soxfan Senior Member

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    The more I am reading on this subject I fully believe my downward spiral has to do with my thyroid issues. My endocrinologist is very laid back and doesn't seem to been concerned. Just as a point- when I told her I had gained 8 lbs in 4 months and had to go out and buy new pants she said to me..oh does it bother you that you have gained some weight. Well...YES it does when it is happening for no reason.
    I have also had my TSH go from 2.07 up to 5.78 in a matter of 4 weeks without a mediation change. Something is going on.
    I have totally decided to change endos. I am suppose to be having some blood work this week and right afterwards I am going to stop in to the endo's office in my town. I am seeing my pcp this week and will have him look over my scan results again and figure out who I have to see to get this biopsied.
    I am the one that mentioned my cholesterol went up 44 points and I have been gaining weight at about a pound 1/2 a month. I can guarantee I have not changed anything about my eating and I still exercise as much as I did before. What is wrong with these doctors to just dismiss this stuff.



    It is so frustrating to have to do all this on our own when we aren't feeling well to begin with. I know we all probably have to be our own advocates here at least I have had to be for the past 6 years..I am tired.
     
  9. zoe.a.m.

    zoe.a.m. Senior Member

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    Mamma mia! I am with you Sox! Boy, it sounds like we're living parallel endocrine-related lives... Strange.

    Julia, My fifth digits are much shorter than the fourth. I was just tested for Hashimoto's 2 months ago and both antibody tests came back within normal range. Is it possible that that is still a bit meaningless? Sounds like after I get this biopsy done and find out what's what, I need to find an endo and a very, very good one. I wonder if a naturopath would be more on the same page about ordering the reverse T3 and T4 tests and others mentioned on Victoria's post (BTW, thank you Victoria, your post and the site you linked are amazing; I'm still working my way through all of it!) because I have zero patience for going to see someone who isn't progressive to aggressive in this area and who will just be a waste of time and energy!

    Tanniaaust, What are the tests you've had done to find out about insulin resistance? I've certianly been aware of it and wondered about it, but I have not found info on testing for it. I have had two ultrasounds that found cysts on my ovaries (first was just one, slightly-large one that burst) and the second found multiple and then they decided it was either PCOS or just normal follicles in the cycle--with no followup of course--I think now that practice should be called "Olympic Don't-Even-Think-You're-Going-To-Receive-Any-Followup Care."

    My blood pressure dropped to low 90/50-100/60 for the first 6-7 yrs of illness and came up to what I felt was normal (don't know the numbers--maybe 115/70--just stopped feeling like I was going to pass out all of the time) and in the last month has shot up to 144/90. To my knowledge and based on how I've felt, it hasn't been going back and forth, just has gone up up up recently.

    Sox, Same thing with the pants and sudden gain and it correlating with less calories, cleaner diet, more stretching/walking (whatever I was capable of). I'm really ticked off right now that I've been speaking about this weight gain to my practitioners and so far have really been treated like I'm being a bit vein or had unrealistic expectations--and they're not getting that it's not normal to have to go up 3 sizes in 18 months unless I'm sitting on the couch with a spoon stuck in a pint of Ben & Jerry's watching tv nonstop! And most importantly: the weight gain correlates to how I feel! I keep trying to explain this to my doctor: I don't care what it is or what you call it, I care about the symptoms and if it makes it impossible for me to function!!! This has all gotten my ire up!

    Sounds like reverse T3/T4, pituitary testing, (should the thyroid antibody test be done again so soon?!?!), and insulin resistance and however one tests for PCOS needs to be addressed.

    I'm frustrated because here we are again with sub-clinical symptoms--not always though, esp. with lipid panels--that, because we're often women and often speaking about a weight gain, are being treated a little like the "hysterical female" archetype when clearly our bodies are struggling a great deal and it's showing up everywhere. As annoying as symptoms are, they're trying to tell us something. I also wonder how much endocrine dysfunction is a result of not being able to exercise regularly or anywhere-near enough? But then, I suspect all of the endocrine-disruptors in the water, food and plastics play a big part in this, and, as women, we're prone to many more symptoms due to our fluctuating and complex hormonal systems...?
     
  10. soxfan

    soxfan Senior Member

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    zoe- I am beyond frustrated with this whole thing. I decided I am definately switching doctors after reading more about hypo symptoms and cholesterol raising. I am getting my blood work done on monday and will stop next door and talk with the new endo that just moved into the offices. I wasn't having any of these problems until I started seeing the new doctor and she started playing with my doses. The fact that I was thin to begin with is no reason to dismiss that I have gained weight and had to go out and buy new clothes. That really bothers me because I don't feel right and have only felt so much worse....the fatigue is a killer right now.
    It really isn't just about the weight but the cholesterol is another thing that I have been reading about and how it is related to thyroid problems. Especially when I had great readings just in January. What is wrong with these doctors? I know we have to be our own advocates so I will continue to be so and dump this doctor. I wanted to back in April when I had already gained 6lbs in just 2 months but decided to give her another chance.
    When I first went to her she did test everything to do with the thryoid..all the different tests. I am also going through a cortef taper with her and am wondering if I really need it as well. My cortisol bounces around like crazy too even though I always have it tested at 8am.

    I wouldn't be having such a problem with all this but these are all new symptoms for me and just happen to coincide with when she was changing up my doses and the nodules were discovered. ARGGGG. Okay well I will keep you posted on what happens with me. I don't see the pcp till the 20th so I won't have any of my results till then.
    And to make a mention of the whole blood pressure thing...there are times when they can't even get a reading barely and other times when it is very high..another strange occurance happening now too..
     
  11. zoe.a.m.

    zoe.a.m. Senior Member

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    Sox,
    I think I missed the hypo+cholesterol connection! If there is one it would explain why my lipids were super high (like 75-year-old-diabetic high) and then dropped as I started to gain weight that would not come off. I still think there's an insulin connection--makes sense since the glands are all taking cues from each other. Take heart in the fact that you've at least begun with an endo and now you know what to look for! One thing I've been told by a couple of solid med professionals is that cholesterol levels are really about how the body metabolizes sugar, not about fats. This meshes with my experience of being more likely to eat pasta or bread (good, whole-grain stuff) than meat or whatever else supposedly causes high cholesterol. It's quite a quagmire.

    I had the same experience where, when I so thin for so long, my doctors just treated me like I wasn't eating (or, apparently was taking drugs!?) and just not telling them. And then when I began gaining weight (and 5-10 pounds would have been just right) my current doctor was relieved b/c she felt I needed the weight. Initially I felt somewhat better--less apt to be too cold all of the time, better able to not catch colds, etc.) but then it just gained an awful momentum and I've even gained a few more pounds in the last month when I've been mostly bedbound and had zero appetite.

    It sounds like you have every right to wonder since you're already being medicated! I sure would be asking questions. Make sure you check out Victoria's post in this thread with the link to Dr. Hyde and the questions about endo's only prescribing T4 meds; even though I'm not at any such stage, that's the type of stuff I want to know.

    Wouldn't it be something if the blood pressure, ovarian and thyroid growths, lipid levels and weight loss and gain are all due to some strange rapidly-fluctuating change in thyroid levels?! Because the picture is so mixed, it's hard to know what to read and where to go. Glad you're getting blood work so soon and you'll have new input!
     
  12. soxfan

    soxfan Senior Member

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    zoe- I am going to look into the whole insulin thing too.. there is no possible reason for my cholesterol and LDL to go up so much in a short period of time. I have a very good diet which has been the same since becoming sick. I don't eat much either...
    yes, I think because I have been thin for so long that the doctor just figured it was okay for me to have gained a few pounds. But now this is getting ridiculous having to buy new clothes. 5 pound would have been alright with me too cause my clothes would have still fit!

    I did the reading on the hypo-cholesterol connection today. There is a good site called stop the thyroid madness that has alot of information also. They have a list of symptoms and so many I have which are new were listed. I do think my thyroid levels are changing like crazy..

    I am on T3 also along with the levoxyl but she had cut down my dose when I first went to see her and I think I need to go back up to my original dosage. I am going to read Victoria's post right now again and what Dr. Hyde has to say..Thanks I will keep you posted maybe by message so everyone doesn't have to read all about my thyroid problems!

    Kim
     
  13. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  14. Victoria

    Victoria Senior Member

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    Further to my original post, my regular GP referred me to another Dr in my clinic who is an acupuncturist & naturapathic doctor (as well as a regular trained medical dr).

    I want to explore this thyroid disfunction theory. I saw her last week and she has ordered more blood tests for a hormone profile, iodine, zinc, more thyroid, pituitary (cause I told her my pituitary function test was below normal in 2006 & the endocrinologist refused to answer my queries about this, at that time).

    She would like to see me off the Beta Blockers & Amitriptyline. Despite being a western trained Doctor, she doesn't like any drugs.

    And when I mentioned that I felt the best following the paleo diet (no grains or dairy), she not only knew what I was talking about, but agreed with me. (Most doctors have a hard time accepting that I don't do well on grains & dairy). I do eat a small amount of grains at the moment (cheaper than my strict Paleo diet), but I feel much better on meat/fish, fruit, veg, nuts & seeds only. I don't have cealiac disease according to the Gastroenterologist back in 2004, but I could be borderline.

    I believe you've got to be pro-active & read as much as possible about your symptoms & health problems. With so many diseases having similar symptoms, we have to be open to the fact that our doctors are only as good as their training & experience. They can be wrong & send you down the wrong path entirely.

    Many doctors think that the traditional blood tests are the ultimate answer & fail to take into account your symptoms & instinctively knowing yourself (that you feel "bad").

    Also had a 24H urine cortisol test. Will be interesting to see if the results are different to what the Endocrinologist ordered in 2006.

    And while my regular GP is fantastic & very supportive, this new GP (on first appointment), seems to follow many of my own beliefs in diet, exercise & alternative therapies.

    Stay tuned for the results of all these tests. Also see my cardiologist next week for review (this review has been cancelled several times for various reasons & I will be asking him if I really need these Beta Blockers now I'm not working, not stressed & having no heart arrythmia episodes at the current time).
     
  15. zoe.a.m.

    zoe.a.m. Senior Member

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    Victoria,
    All of this info is so helpful! That's interesting that the MD sent you onto an ND as I have been thinking that, assuming everything is benign with my thyroid growth, I'm probably headed to an ND. It's so helpful to see the list and types of tests you've had, and are having, done. I'm still beyond fascinated by a pituitary test as I've never heard of one before. I have every intention of finding a doctor who is interested mainly in subjective info and subclinical results, I barely care to waste my time with someone who is only looking for out-of-range!

    Have you been able yet to track differences in this realm since changing to a Paleo (or modified Paleo) diet? Are you able to get only organic meats? I find this difficult, not to mention expensive. I have not even been able to find grass-fed beef and our co-op is supposed to be one of the best in the entire upper West coast. I tested negative for Celiac as well, but my diagnos-techs testing showed an elevated response to gluten, so I am sticking to rice and some corn these days with occasional dips into something with flour in it. Hopefully that will stop entirely, but I sometimes have to choose imperfect over eating nothing at all.

    I am supposed to be taking a beta blocker but I'm not. It just made me too woozy and I didn't want to continue; I can only hope that my bp will go down... I'm trying not to get too far ahead of myself since it sounds like it could 8 days before I find out anything about the biopsy that hasn't even happened yet. Unfortunately, doctors don't move as fast as I think.

    I will definitely stay tuned for your test results. When were you diagnosed with an arrythmia? I've always been a bit curious about those since my heart 'acts up' quite a bit.
     
  16. taniaaust1

    taniaaust1 Senior Member

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    Julia

    ohh i wish... the GPs about here are some of the worlds crappiest ones. Ive never been sent to an endocrinologist thou i did see a CFS/ME specialist who is one but that was cause i was part of a study he was doing (he didnt like care for me as a patient or person... wouldnt even write to my doctor on the abnormalities he found with my autonomic system).

    Im expecting to have or get thyriod issues seeing i have so many different things going wrong with my other hormones (and due to my genes).

    What im going on that my thyriod is fine is TSH tests in 2006, 2007, 2008, 2010 and Free T3 and Free T4 test in 2008. Is that the same as reverse T3 and reverse T4?? I also had a thyriod autoantibodies test in 2007 and in 2008 (that one was testing for thyriod peroxidase antibodies as well as thyroglobulin antibodies).
    Does this testing all sound sufficient to rule out hypothyriodism issues???

    I also had my parathyriod tested due to lab recommendation due to my D3 being so low
     
  17. taniaaust1

    taniaaust1 Senior Member

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    With PCOS one gets like a chain/ring of pearl effect (looks like a pearl necklace) with the follicles like in a little ring in the ovaries. I wish i had a scanner cause i'd try to scan my ultrasound to show you what PCOS looks like. I have like 9 or more follicles.. Dont rely on your GP for a diagnoses in that area, make sure you see a gynocologist to find out if that is one of your issues or not.

    For insulin resistance its a 2 hr glucose tollerance test but the doctor needs to also request insulin level too.. and then they both are done at same time http://en.wikipedia.org/wiki/Glucose_tolerance_test
    ...........

    Victoria said
    Im in the middle of doing a 24hr urine cortisol test tonight.... I have the Addison's disease gene and as my cortisol in past has tested just out of normal ranges and low.. i worry that the CFS/ME and my genetics may send me into major cortisol issues at some point.
    ***fingers crossed that it hasnt dropped even lower then the previous tests***

    (Ive no idea how low it has to go before they diagnose Addisons.. if anyone here knows that... please share)
     
  18. soxfan

    soxfan Senior Member

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    From what I understand from my endocrinologst. in order to have Addisons it means your adrenals don't produce anything at all. They are basically dead...You would have to be on a replacement for life. I have had low cortisol in that past but they were just calling it adrenal insufficiency. I have been on cortef for going on 4 years and am at the end of my taper. I just want to make a mention that if anyone has to take a steriod make sure you only do it short term. It has been total hell weaning off this stuff. I don't care what any doctors say about if you give a low enough dosage you won't get supression...not true. I can vouch for that. I have endured terrible crashes trying to taper this but I am down to 2.5 from 20 and it has taken me almost a year.
    I had the ACTH test done a month ago and my cortisol started at 8.2 and in an hour went up to 18.5 so they said my adrenals are able to function under stress. I am surprised they are able to function at all after being on this stuff for so long..Just be very careful.


    I think one of the thyroid tests that should be done is also the T uptake. I believe it has something to do with converting T3 but not totally sure. The tests my doctor has run on me in the past year have been- T4, T3U, TSH, T3RIA (total T3), Free T3, Antio TPO antibiodies. Unfortunately I don't have all those results. She also has been testing my blood cortisol at 8am every 6 weeks. It has ranged from 23 down to 8.2. Usually runs around 12.

    Funny about the glucose tolerance test because my Lyme doctor wanted me to have it done but my doctor here (no longer seeing him) said it wasn't necessary so I didn't have it done.
     
  19. zoe.a.m.

    zoe.a.m. Senior Member

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    First I'm hearing of this, and I'm surprised because my D level went from 8 to 12 in a year's time and went up to the high 20s at 10,000iu/D3 day and haven't had the number tested since. No doc has ever mentioned parathyroid testing!

    Sounds like I need to get ahold of the original report and ultrasound pictures and take it to someone who knows what's what. Thanks for the specificity of how they diagnose PCOS, I'd never heard that either! I want to speak to my PCP about the glucose testing though she is out of town until the 25th.

    Okay, what about these T-uptake tests? I think we need to make a list of all of the thyroid tests here on the thread for easy reference and so we can go to see our respective docs with names of things we want tested so we know exactly what we're advocating for.

    Back from the biopsy and the rude receptionist answered my question "My doctor will be away until Sept. 25th, so who else is available to give me results?" first as "whoever is covering for her" (I explained that no one was) and then she "then you won't get any results until the 25th." She's really bent out of shape about something, but I don't think it's me particularly. I said "I don't think that will work for me" and she then offered to let me sign a waiver to have the results released to me directly, though by mail, so there could still be a few more days of waiting and I think Monday of next week would be the soonest they would be in (fingers crossed for earlier though).

    I have little to say about the procedure except:
    -Do NOT have one done without ultrasound guidance. Apparently they're done "blind" about half the time and my nodule was "right on top of [my] carotid" according to the surgeon who did it.
    -I wish I could say that it doesn't feel like someone stuck a long needle down my throat.
    -Unfortunately they go in as many times as they need to until they get exactly what they want, or, as the surgeon put it "I demolished it!" (he meant he got the right spot after a few rounds, not that he'd broken up the nodule--I asked the tech afterwards b/c I didn't know what was going on.
    -Made it okay without dark shades for my eyes or valium or anything. Was super calm until the doctor came in and I saw needles and had been lying there, neck exposed, for a while just wanting to get it over with.
    -And, sure hope that's the end of it! Also: hope this info doesn't deter anyone from doing this since I wonder if I would have been more worried had I known some of what I know now, but I'm needle-phobic.
     
  20. soxfan

    soxfan Senior Member

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    Thanks for the info on the biopsy because I might be getting one as well. I am okay with needles since I had a total of 3 PICC lines put into my arm. If I do end up having one I will be sure there is ultrasound guidance. When I had my first PICC put in they didn't use ultrasound and I ended up with phlebitis 4 days later and had to have it pulled. That was extremely painful.
    I will be interested in hearing the results...I am sure you will be fine.

    I had to look up the T uptake test since I had no clue what it was. When my endo calls me with my results she never gives me the exact numbers just that is is normal. That really irritates me. There is a good site called stop the thyroid madness which has alot of information on thyroid and what tests to have done etc...
     

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