The THYROID Thread

Discussion in 'Coping and Compassion' started by Christine, Nov 11, 2006.

  1. Haimia

    Haimia Earning My Ears

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    Oh my, Singing Mom. It is good your DH went to the doctor! I had, what I thought, was a blood clot in my R ankle after having the vein striped on that leg. Went to ER and found out I had blood clot there, in my R thigh and also in my lung! I got to spend three days in the hospital and several months on blood thinners. I ended up with an IVC filter after a hematoma with my thyroidectomy and it cannot be removed (tried and tore the vein!). I am still on blood thinners because of the IVC filter. Hoping your DH continues to do well after this health scare~!
     
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  2. Christine

    Christine Would love to be able to sit on

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    Hello everyone!

    Singing Mom--WOW, that sounds so scary. Being the medical snoop/curious person that I am, did they even hazard a guess as to why this happened to your husband? I mean, that's not just an everyday thing, right? One of my high school friends on Facebook unexpectedly passed away on a beach vacation a few months ago and it was due to a pulmonary embolism. I just wonder what might cause that.

    LMP--your upcoming trip sounds nice and gives you something to look forward to!

    Not much going on here at all. No trips planned, nothing. Just doing my thing: working, shopping, and trying not to eat everything in sight. My son, who graduates college this coming May, got an amazing job offer. Possibly he will have to work/live in Richmond, VA which is only an hour and a half from us, but not what he was expecting. He has until 11/17 to decide. I'll probably have the "kids" at home for a bit this weekend which will be nice.

    Cold weather is finally here. A few days ago I was out exercising and it was 74 degrees; today, it *might* get to 40. Brrrr.....
     
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  4. mrswillson

    mrswillson the duck's biggest fan

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    I'm so glad to see that I'm not the only one dealing with this awful disease!

    I was diagnosed at 19 with Hashimoto's Thyroiditis and am 25 this year. The symptoms that took me to the doctor in the first place were chills, constantly feeling cold, the feeling of an adrenaline rush in my chest several times a day, hair loss, and heart palpitation. I was prescribed 50mg Levothyroxine and have been on the same dosage since.

    Next month I am going back to the endocrinologist and hoping to undergo some more invasive testing as I have been feeling generally unwell on and off for the last year and a half despite my levels testing normal. The worst symptom that I have developed is horrible brain fog - I can't remember words (tip of your tongue feeling), plans or appointments I've made, and on bad days, feel like I can't mentally process anything. I have started to have horrible moodswings that I have been told is associated with a hormone imbalance, as well as found out my prolactin is high (that unless there is a pituitary gland tumor, is caused by Hashimoto's. I've ruled out tumors.) I have been diagonosed with idiopathic gastritis, which I have read can also be a by-product of Hashimoto's because it is autoimmune in nature, and I have also been dealing with potential interstitial cystitis which can be linked as well. Most recently I have started to develop neurological migraine symptoms - dizziness, feeling of standing on a boat, "brain zaps" - and have been wondering if these too could be linked.

    I've done my best to eliminate gluten and dairy from my diet, as well as restrict soy. So far going gluten and dairy free has provided some limited relief from my GI and brain fog symptoms, but sadly it's hit or miss and not full proof.

    At this point in time I'm wanting to see if anyone else has been having such extensive issues, or ask for advice on what other chances I can make myself, or avenues to pursue with specialists to try and start feeling normal again. :(
     
  5. Christine

    Christine Would love to be able to sit on

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    Hi there! Sorry you are feeling so unwell. Unfortunately, even though this thread is titled "THYROID" we don't get a lot people in here who have Hashimoto's. So if you don't get a response back on your issues, please don't feel we are unfriendly. The most active posters on this thread seem to be thyroid cancer survivors and we really only know about that as well as problems from under/over medication. Hopefully someone will chime in who has Hashimoto's experience.
     
  6. mrswillson

    mrswillson the duck's biggest fan

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    Oh! Well that comes as a surprise considering Hashimoto's is the most common cause of hypo/hyperactive thyroid disease, so hopefully I won't be an anomaly on the board. Thank you for the heads up.
     
    Last edited: Nov 10, 2017
  7. macraven

    macraven Proud Redhead Moderator

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    I have hashimoto for the past 30
    years

    Your symptoms sound similar to mine

    I can't take Levothoraxin due to the inert materials in it so only take synthryoid

    My levels have always flexuated so do lab work every 3 months
     
  8. SingingMom

    SingingMom DIS Veteran

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    No idea what caused DH's pulmonary embolisms! They did determine he has a few very small clots in his right leg - but the two in the pulmonary arteries were very large. Will probably be on Xarelto for life. We've been doing all the followup postop visits - The "no holds barred" vascular surgeon said best to stay on the blood thinner since, "one near fatal episode is enough" This guy is a real prince. :sad2: If he says "fatal" one more time, I'm going to smack him.
    We did get the ok from all the doctors that he can fly - so we are going to Disney for Christmas to see DD. Then we are going to Disneyland in February on the "Backstage Magic ABD". Just have to make sure he walks up and down the aisle a few times! Oh - and the vascular surgeon told him no motorcycle racing or kick boxing. Because.... a bleed could be FATAL. :rolleyes1
     
  9. Christine

    Christine Would love to be able to sit on

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    Oh boy. Well, I guess the doctor wants to make sure you're taking it seriously. I was just wondering if your husband had been flying a lot recently or had had some sort of injury in the leg area that might explain it. Well, maybe you can buy him some cool compression socks for Christmas! They make them in fun patterns now. Glad to hear everything's okay!
     
  10. SingingMom

    SingingMom DIS Veteran

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    We flew to Spain in May, did LOTS of walking, then we flew to Florida July, and he flew to Detroit and Charlotte. Those were all 2 hours or under, so the doctors don't think it was that. Too long ago for the Spain trip to cause trouble now. He has more bloodwork this week and then followups with cardiologist again. Hopefully it was a onetime episode. Too scary to think about what could have happened!!
     
  11. luvmarypoppins

    luvmarypoppins <font color=darkorchid>I am debating whether to pu

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    Info post before I forget - does anyone use levo from CVS pharmacy. I saw someone post on thy ca that her cvs changed the supplier and its not Mylin and now she is having horrible issues.

    MrsWilson - welcome. I can't comment about the hashi's but I am slowly learning thanks to my one ds gf who has it.

    singing mom - that was so scary about your dh. I had the xarelto too and had issues at first with bleeding from everywhere. Even had an incident like 2 months after. Same with me, they dont know what caused it and said its very serious. Hope your dh is on the road to recovery.

    Christine - did your ds take the job offer?

    macraven - how was food and wine for you? Hoping your foot is healed and you can get on with the parathyroid issues

    The L side of my neck keeps pulling and bothering me. Its annoying. I am sure it must be scar itssue. Dont know about thanksgiving yet. Whoever is here gets food I guess lol. Ds1 has a gf now so maybe he will go there, who knows.

    Working on the rest of the vacation plans and now dh says oh I have a big project the week we go. I said well just fly down, check in and go I guess but he said he will stay. Yeah that translates into I will be on my phone all day and computer all night lol. Such is life. No good fast passes left. I really only wanted fop for dh. Nothing for ROL but I did get navi river one day. I want to change the time though. Renewed my annual pass and just have to get the mvmcp tickets. I did cash in my southwest points and I am going there for free one way, yay!

    I will have a big announcement before the new year and I am sworn to secrecy but I am :):cloud9:

    Thanksgiving blessings to all. After all I went through this year I sure have alot to be thankful for for sure!!
     
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  12. macraven

    macraven Proud Redhead Moderator

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    someone having a baby.......?
    win the lotto.......?

    lol
     
  13. macraven

    macraven Proud Redhead Moderator

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    lmp, foot seems good, knee still an issue at times but ortho said it could take one year for all to be better.
    6.5 months into healing and on schedule.
    so that part of me is doing fine.

    had CT of neck and ultrasound of thyroid and parathyroid yesterday.
    the nuclear test for sestamibi scan is monday

    Tuesday i have to pick up the tests on discs and readings on the 3 tests and send to the surgeon in chicago.

    Had a trip planned for late january for seeing Mickey but cancelled it out.
    Will reschedule for May when weather is better.
    I always fly down but halfway thinking i will do the 8 hour drive as won't be an issue for the knee anymore.

    Earlier this year I drove down but flew the second trip for this year.

    Hope all is going fine for everyone here.
    Wish good weather for all for Thanksgiving day!
     
  14. Christine

    Christine Would love to be able to sit on

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    Hey LMP, can't wait for your announcement! I've got a few things running through my head....

    My son ended up with three very good job offers. It was a tough choice because each one had pros and cons and not one of them was decidedly better than the other. He ended up going with Capital One and has a very good chance of having to relocate to Richmond, but he could end up being in the DC area also. His money will go much farther in Richmond, but he wants to be in the DC area. It was hard because the other two jobs were in the defense/intel and/or accounting industry and those would come with security clearances. Since that industry is "home" to me, it was hard to think outside the box and give him good, objective advice, but he's hoping that going with a true private industry/Fortune 500 might be a good thing long term for him and let him do things he wouldn't get to do in government consulting. He's still feeling like maybe he didn't do the right thing but I guess time will tell.

    So CVS is no longer carrying Mylan generic? Wonder who they are using now? Two years ago when my beloved Levoxyl was pulled from the shelf, I was having a tough time feeling well on anything so I was trying to find a generic Levothyroxine that mimicked Levoxyl in fillers. It was pretty hard to do and I was finding the Mylan generic everywhere, which I think is actually pretty close to being like Synthroid. I ended up getting my generic at Costco (made my Sandoz). It made me pretty hyper at the same dose so I ended up back on Synthroid for a year. Levoxyl came back out and I am back on that. It is a brand name that costs the same as the generic and I feel it gives me the smoothest ride of all. My TSH doesn't change very much on it from Synthroid--just a tiny bit (goes up a tad), but I don't get these odd feelings on it, almost like an adrenaline rush. It seems to have less fillers and for someone like me that seems to have reactions to lots of things, that's important.

    No big plans here for Thanksgiving. Just dinner with my parents who live close by. I'm just happy to have the time off of work. No vacation plans either; I just don't have it in me to plan. Air travel and Disney and all its planning requirements now have pretty much taken the joy out of it for me, although I will go back one day!
     
  15. sunb75

    sunb75 Mouseketeer

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    Hello friends! I just happened upon this thread while doing a search for February weather ;)

    My son (18) was born hypothyroid and was on Synthroid for his first five years. At five, his doctor decided to take him off the medicine and see if his thyroid was working properly. A few blood tests later, the doctor claimed him "cured". Fast forward about 10 years and he started having many hypothyroid symptoms, which also happen to be the some of the same "symptoms" of being a teenager. I asked several doctors about it, had labs done and they were all normal, but my son wasn't. A doctor finally talked us into trying anti-depressants. In the last three years, he's been on several, seen therapists, and has struggled so much! Finally, a couple months ago we went to a nurse practitioner who tested his thyroid again, along with his testosterone. TSH and other thyroid levels were "normal", but his testosterone was extremely low. APN refers us to endocronologist, but we couldn't get in for months so I contacted another APN who specializes in "men's health". She ran more tests and was so thorough with him. She noticed a "swollen thyroid" (she thinks it's more, but we are still waiting for a scan) and finally his labs showed an elevated TSH. So, she started him on levathyroxine.

    I have searched and searched and called and called and he finally has an appointment in December with an endo. He has another appointment in March with an endo that is supposed to be the best in the area.

    My son is depressed, has no motivation, but wants to do well, brain fog (NO memory), no energy, insomnia, and is not himself most of the time. He cries and cries because he is unwell. I recently started him on Vitamin D, even though his levels were in the normal range, a thyroid natural supplement, and a quality fish oil. If anyone has any advice, I am looking for anything to help. Thank you :)
     
  16. Christine

    Christine Would love to be able to sit on

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    sunb75: So sorry to hear about your son. I'm sure it's very frustrating and heartbreaking to see your child feel so down.

    I'm glad you are going to see an endocrinologist. Hopefully a good one will be able to really give you thorough information about the thyroid. My personal thoughts are that if you have the TSH levels in optimal range (1.0-2.0) and the Free T4 and T3 are also in optimal range, then you need to move on to another cause. Many of us here have struggled with thyroid levels. In the past, the way thyroid cancer was treated, many of us had to go severely hypothyroid to get treatment. I know everyone is different, but I believe it takes substantial hypothyroidism to cause some of the systems your son is having. Certainly more than even being on the "edge" of normal.

    I am a person who doesn't take the diagnosis of depression lightly because I believe doctors are too quick to throw a pill at you and move on rather than try to investigate what is going on in the body to cause this. From what you write, it certainly sounds as if your son has something "not right" going on within his body but based on all his tests, I'm not thinking that this is a thyroid issue but you were right to investigate it (and continue to do so). I think an endocrinologist is a good start. Please keep us posted here on what the outcome of your visit is. Honestly, there are so many physical issues that could cause this. My coworkers 6 year old grandson had many of the symptoms you describe of your son (listless, no motivation, depression) and it turns out he had Lyme Disease even though they can never recall a tick bite. There has been so much improvement with the treatment for him.
     
  17. sunb75

    sunb75 Mouseketeer

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    Thank you for your response. Is there something that makes you think this is not thyroid? Any ideas as to what it could be, new avenues to explore? I'm seriously so lost and not sure where to turn. You are right, doctors simply want to medicate, medicate, medicate and not get to the root of the problem. Could it 'simply' be depression and anxiety? Possibly.

    TSH is not optimal and has been between 3 and 7 the last couple of years. About a year ago, it was 4.54 and I requested a referral to an endocrinologist and was denied. Needless to say, we didn't go back to that doctor.
     
  18. Christine

    Christine Would love to be able to sit on

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    Okay, I think I misunderstood your first post where you described him being tested and you were told it was normal all those times and then there was one time that it wasn't. Then you state that he was put on levothyroxine by the one nurse, so I am assuming that his levels are now good with the medication yet he still has symptoms.

    Soooo...if his levels are still high, then I agree that you need to do more with the thyroid. If his levels are treated then you will have to move on to something else. Guess I'm not clear on exactly what his TSH is after treatment from the one nurse who put him on levothyroxine.
     
  19. sunb75

    sunb75 Mouseketeer

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    Sorry for not being more clear. Over the years he has had many labs on his thyroid. I was told his levels were 'normal' when they were on the high end of 'normal'. Even then, I requested an appointment with an endocrinologist due to his thyroid levels at birth and symptoms.

    Just recently, about 2 weeks ago, he started levothyroxine. He has not been tested again yet. There has been no change in symptoms, and I don't expect there to be for several weeks or months based on what I've read and heard.
     
  20. Christine

    Christine Would love to be able to sit on

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    Ah, okay, good to know. Depending on how hypothyroid he is and what dose they gave him, the Levothyroxine can actually show some improvements fairly quickly. It takes a total of 6-8 weeks to reach equilibrium with one dose. If you're not very hypo, it's probably much quicker.

    Are you forced to get a referral for an endocrinologist based on your health insurance?
     
  21. sunb75

    sunb75 Mouseketeer

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    Yes and the doctors. I even asked if I self payed if we could have an appointment, I was told by several offices that the doctors only see patients with a referral. I'm extremely disappointed in today's "healthcare."
     

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