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Treat or not to treat?

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JayValle
JayValle

Hello

I have been under severe stress since 2014 when my husband was diagnosed with sarcoma and passed in 2015. A week after he passed, I started falling apart physically due to stress and grief. Two PVDs with retinal bleeds, labyrinthitis with vertigo and dizziness for 3 months. Occular migraines. General fatigue. I thought I'd had it all when my blood work came back as hyperactive. TSH 0.004 (very low and overactive state)  T3 and T4 normal to high but within range. My doctor wants to do a radioactive iodine uptake test to determine exact diagnosis. Regardless, he will want to treat me as I have antibodies in my blood. My quandary is that I feel well, other than grief and being tired at times. I don't have any hyper symptoms and I can't lose weight, something I've struggled with my entire life. 

Has anyone had stress and trauma trigger Graves Disease? If I am not symptomatic, I am hesitant to treat and possibly trigger something worse.

Also - I have two thyroid nodules I was treated for with armour thyroid and they are shrinking. I've been off meds for a year, still my TSH dropped.

I appreciate any advice, experience, feedback others can offer.

Thank you

Jeannie 

0 likes, 18 replies

18 Replies

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  • rebecca5678
    rebecca5678 JayValle

    Posted

    I'm so sorry for your loss . You are going to have to be your own judge. I personally didn't have the treatment. My TSH was at 0.01 for almost 2 years and my uptake was at 98% , I also have nodules .my point is it took awhile but I'm at a normal level for right now. I do think stress at a lot to do with a lot. But like I said it was a personal choice for me after doing extensive research . The best of luck to you in your descion!!!

    • JayValle
      JayValle rebecca5678

      Posted

      Hi Rebecca

      What does 98% uptake mean? Is it from your nodules or graves? My TSH is 0.004 but my T3 & 4 are within limits although T4 is high normal.

      I have no symptoms of hyper.  Considering all that's happened I feel rather good. I was very tired in early Sept and asked for blood work to see if I had gone hypothyroid again and that's when we found the hyper TSH. So I do hesitate to take anything that might make me symptomatic. I do want to take L-Carnitine to raise my TSH. I'll have to wait for test results.

      Thank you for replying and for your support. :-)

      Jeannie 

    • rebecca5678
      rebecca5678 JayValle

      Posted

      I had a thyroid uptake done. It's when you take the pill and it measures your thyroid function. Mine was at 98% which means my thyroid was very , very overactive !!!! Yes I have 4 nodules and had biopsy done on one that had enlarged in a years time but it was fine . My endo told me even with the Radation it doesn't get rid of the nodules . The only way to do that is to have it removed and I'm not keen on that either for me. Hopes this helps !

  • linda187
    linda187 JayValle

    Posted

    Stress and trauma are usual triggers for this disease.  Mine was triggered by an abusive co-worker.  I am a little confused as to why your thyroid nodules would be treated with Armour thyroid which is a thyroid hormone replacement.  I am so sorry for your loss and all you have to deal with and I do hope you have some support, i.e. a grief group or therapist.  If I were in your shoes I would want to get some levels tested like total and free carnitine, vitamin D and magnesium levels and if deficient, start taking these supplements.  If this does not improve your thyroid labs, you may need to take a low dose of methimazole along with them.  Something like 2.5 mg.  Also get your adrenal labs checked like your Cortisone level.  Please keep us posted as to how you are doing.
    • JayValle
      JayValle linda187

      Posted

      Hi Linda

      I agree about the armour thyroid. Now i know I shouldn't have been on it as my levels were normal but my thyroid doctor wanted me in suppression. I went off last year due to low TSH during the time my husband was first diagnosed.  I'm getting a full blood workup tomorrow. I asked my PCP to add cortisol, adrenal, and redo the TSH and thyroid panel. I didn't realize to ask him to add D and magnesium.  I take lots of supplements now. 

      Question: I started taking alpha lopic acid a while ago @ 600 mg daily. I take D and magnesium asparate to ward off migraines. I take Lipo Flaviniod for tinnitis which has abated thank God. I felt good on the ALA but then I read it can lower TSH. Would you know if this is factual? I immediately stopped last week. 

      I would definitely like to take acetyl L-Carnitine even if they don't give me atd's.  I once raised my potassium level very high by taking too much supplement so I know how powerful sups can be. 

      I get full fasting panel tomorrow. Have physical next Tuesday. Next Thursday I'll have radioactive iodine uptake. Then will know more. 

      I saw thyroid doc today, unfortunately not endo, ENT as endo's are booked till January. He said my nodules are large, wants a CT scan of thyroid to see if it's very sub-sternal. He said my eyes were okay. 

      My eyes are my big concern. I just wrapped up a year of worry due to vitrous detachment (normal aging process) but I had rare retinal bleed with both eyes. So I'm very eye concious. Is there a way to protect our eyes from graves? Not sure yet if I have it but it is a possibility. 

      Thank you for your support :-)

      Jeannie

    • linda187
      linda187 JayValle

      Posted

      I would not take the Acetyl-L-Carnitine to start with.  It is extremely potent and if you are on thyroid blocking meds will send you seriously hypothyroid very quickly.  Regular L-Carnitine would be fine and most people tolerate this well and find it helpful.  I do not know much about ALA.  Usually most supplements are fine in low dosages but a naturopath could better advise about that.
    • JayValle
      JayValle linda187

      Posted

      Thank you Linda. I have called a naturopath doctor and might see her after the uptake. She would treat me with herbs rather than pharmas. So the L-Carnitine would raise the TSH in your experience even without meds? I've read anti-thyroid meds don't work for everyone. I'd much rather go the natural route if possible. 

    • JayValle
      JayValle linda187

      Posted

      Oh, I've also read that bugleweed is potent for hyperthyroid. I've been reading Natural Endocrine Solutions. 

  • Sue1247
    Sue1247 JayValle

    Posted

    Stress was the trigger for my Graves disease and, even now, it can set things off again although I'm having treatment.

  • jan64074
    jan64074 JayValle

    Posted

    So sorry for your loss Jay, I would do as Linda187 has suggested - get more tests done.

    Stress was the trigger for my thyroid going from hypothyroid to hyperthyroid now with Graves (husband ill and house move) and I felt physically well all the time.  It was only through a wellness check at my new doctors and blood tests we discovered there was something wrong with me. Now undergoing treatment with Carbimazole.

    I hope you get yourself sorted soon biggrin

    • JayValle
      JayValle jan64074

      Posted

      Hi Jan

      Same with me. My low TSH surprised me as I was feeling tired and thought I had gond hypo again. Do you have nodules too? If you felt well, did the Carbimazole make you feel any differerent? Did you have the RA uptake and if so any reaction or side effects?  I worry it could trigger my occular migraines which have abated. Worry is the keyword. That's all I do lately.

      Thank you for support and info :-)

      Jeannie

    • jan64074
      jan64074 JayValle

      Posted

      Hi Jay, thanks for asking my TSH was unmeasurable for over a year, but now is going up. I have been on Carbimazole for about eighteen months, all my thyroid readings are now normal. No I've no nodules.

      I come off Carbimazole in January and then we'll see how my thyroid is behaving, I've a feeling I'll go back to being hypo (as I was for 11 plus years).

      Throughout all of this I have felt very well apart from being fed up with 2 stone weight gain. 

      They won't give me RAI in any case as I have a mild form of TED (thyroid eye disease) and when I first went to see my Endo he said RAI could make my eyes worse.

      Eyes more or less normal now, just a bit red every now and again.

      I'm in the UK.

       

    • JayValle
      JayValle jan64074

      Posted

      Hi Jan

      I'm happy to hear you're feeling well and the mild TED is going away! I hope the med puts you into remission. Fingers crossed. 

      Can we stay on ATD's for longer than 18 mths or have a second course if necessary?  

      I had 6 vials of blood drawn today. Hoping to have more results on Monday. See dr. on Tues. I guess it takes time to get the TSH level up. UGH what a pain this is. The uptake next week will tell more.  Did you have the radioiodine uptake and if so, did it give you any side effects?  Does it irritate your empty stomach due to the fasting? 

    • JayValle
      JayValle

      Posted

      Also, Jan, I have such a weight problem almost my entire life due to hypothyroid. Now if I'm hyper, I have not lost an ounce! Weight is a struggle. 

    • jan64074
      jan64074 JayValle

      Posted

      Hi Jay as mentioned I haven't had the need for RAI and yes I hope I go into remission early next year fingers crossed.  

      There are loads of different answers to your question of how long people can stay on ATD's, I've heard people have stayed on them for years with no problems, but I think the Endo's like to get us off them after 18 months.  

      I was a mystery to my doctor as having been hypo for 11 plus years, then going hyper without any real symptoms of hyper - apart from eyes and blood pressure was up....I was gaining weight. That's when I was referred to an Endo who confirmed graves.  

      For everyone of us it's a battle, one way or the other either feeling very ill with it all, or having the dreaded weight gain which I'm sure will get better once our thyroid levels are back to normal and coming of the ATD (Carbimazole)

      There's a load of info on this website ref weight gain and Carbimazole, you'll also find info on RAI and what people have said about it.

      Take care of yourself and post on here how you get on.

       

    • JayValle
      JayValle jan64074

      Posted

      Thank you Jan :-)  I was referring to the radioiodine thyroid scan not the actual RAI treatment. I'm having the scan next week to diagnose why my TSH is low but everything else is fine and I feel fine. I'm going through posts here and on any site I can find relating to thyroid. I like the message boards because here I find people who know what they're talking about and how they feel. Actual experience of others helps a great deal. Some docs differ on opinions and options. 

      I'll post back when I know more as much of this is still a mystery non-diagnosis. Hope you continue to feel well and find remission!

      Take care. Talk soon.

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