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Newly Diagnosed Please Help

Posted , 10 users are following.

jessm014
jessm014

Hi there, I was told I had an overactive thyroid in April and diagnosed with Graves in May. I have been suffering with this for nearly two years and had no idea, I had been to multiple doctors for my constant weight loss, sweating, shakes, headaches, racing hearts, rushed feeling and extreme anxiety. I had bloodwork done many times but I guess none of them thought to check my thyroid? Anyway, when I was diagnosed I was put on a small doasge of Tapazole (5mg) a day but I experienced almost every side effect possible and the symptoms continued to get worse.. my eyes were starting to ache all the time and I had blurry peripheral vision in my left eye for a week not to mention I'm exhausted, moody and feel blah all the time. At this point I've been off the medication for two weeks because of very painful rashes and I was told Friday I have to wait it out and in a few months we would talk about the Radioactive Iodine treatment. I feel awful all the time, I'm having a really hard time balancing work and I know no one with this disease.. there are no support groups or people to turn to where I'm living and I feel like I'm going crazy.. no one understands sad The weirdest part is I was told my levels were "teetering" I don't understand why I feel this awful if my numbers are relatively decent..I felt like my doctor wasnt taking my symptoms seriously because of this, she seems completely baffled by my situation. Do you guys have any advice for a newly diagnosed and extremely frustrated patient? Thanks!

1 like, 27 replies

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  • ariadne43
    ariadne43 jessm014

    Posted

    Hi Jessm014, I too was recently diagnosed and came to this board for support.  The carbimazole didnt agree with me in the beginning but I perserved and use strong antihistimines which do help.  Cant believe you are left to wait it out.  The medical profession dont seem to take Graves seriously at all.  I had my first visit to consultant and she sent me away very flippantly saying i had to stay on medication for a year.  Not even an examination or a scan.  Did they not offer you another anti thyroid drug, ie ptu?  I was told if I could change but decided to struggle on.  A few months on I am feeling slightly better and hopefully you will to.  I thought I was going mad as the anxiety was so bad.  I accept now I will have good days and bad days. 
    • jessm014
      jessm014 ariadne43

      Posted

      Each time I see this doctor I'm left feeling more overwhelmed and I'm always told to wait, I feel like I really have to plead my case when I see her because she just doesn't seem to understand how awful I'm feeling. Wow that's crazy she just went straight to meds and sent you on your way, everyone's situation is so different it baffles me when doctors treat it like it's an easy fix.. it certainly doesn't feel like one. After trying the tapazole and having all the side effects she decided I'm too sensitive to those medications, she didn't even discuss my other med options before jumping right to the iodine treatment. I'm glad you're feeling better and you've found something that's working for you! It seems like it takes a while to see any real improvement.. This process requires too much patience! Omg me too, the anxiety is insane and the mood swings feel like a rollercoaster. It's hard to get a handle on my mind right now and even harder having to pretend that I'm ok around ppl, this disease is exhausting in so many ways! Thanks so much for your help, I feel less alone already!
  • linda187
    linda187 jessm014

    Posted

    Try taking L-Carnitine and Acetyl-L-Carnitine. You could start on 500 mg of each just to see how you tolerate it. Also others on the Board take 1000 mg of Vitamin D, and 200 mg of Selenium. If you tolerate it well, you can raise the dosages of L-Carnitine to 3,000 and Acetyl-L-Carnitine to 2,000 mg, that is if you are not taking the Tapazole. If you do take the Tapazole, I would not take higher than 500 mg of the Acetyl-L-Carnitine as it raises your TSH very quickly when combined with Tapazole. Carnitine is an amino acid that is lost from the muscles of hyperthyroid patients and needs to be replaced.
    • audrey97605
      audrey97605 linda187

      Posted

      Hi Linda,

      Just wanted to ask you .. But keep forgetting ... When you take the L-cartinine and Aectyl Cartines ... And the TSH raises does that mean you should feel better or the muscles will feel better ?? 

      I know my muscles do feel better ... But other symptoms are still around ... And they change from day to day is that normal for this disease?? Thank Audrey

    • linda187
      linda187 audrey97605

      Posted

      Muscles will feel better. If you are on Carbimazole or methimazole, you need to take the lowest dose of acetyl-l-carnitine and monitor your blood work and adjust dosages frequently because your TSH will rise and your T3 and T4 will fall and you don't want any of these values out of range. It does this very quickly. The regular L-carnitine helps with the muscles but does not affect your blood work this much. Affects it a little but not as much as Acetyl. It would be helpful if you could post your day to day changes in how you feel but the monitoring is most important and also the lowest dose of Acetyl when combined with meds is important. If the values rise too quickly or if you have side effects you don't like, take only the regular L-Carnitine and drop the Acetyl. It is a balancing act. If you are on a high dose of meds and you add the acetyl, you will be able to lower the meds dose but advise doing this in cooperation with your doc.
    • linda187
      linda187 audrey97605

      Posted

      Audrey, I felt better as my TSH rose well into the normal range, I especially felt better with eye symptoms. But when my values were where I wanted them, I got palpitations on the acetyl so I switched to just the Regular L-Carnitine. I will have my blood work done in about a month to see what my values are now. Also, my T3 and T4 are at the bottom of the normal range so I don't want that to drop any further. That was another reason why I stopped the Acetyl for right now and just continue on the Regular.
    • jessm014
      jessm014 linda187

      Posted

      I'm definitely going to try these, my legs were so weak yesterday I could barely walk so I'll try anything and everything at this point! It's strange because I've asked my doctor multiple times if there's anything else I can be doing to relieve the symptoms and she didn't bring any of this up, thank you so much for your help!
  • linnet2012
    linnet2012 jessm014

    Posted

    As Linda says the Carnitine ( both forms ) is a lifesaver. I too wassick for ages before diagnosis. In fairness my GP was sure I was hyperthyroid, but every blood test came back normal for months. Even though I was severely ( hospitalisation level ) symptomatic. Eventually my levels shot up and I was treated. Been a roller coastet with poor health care. I now self treat and am finally well again !

    The other herbs that are really useful are bugleweed and motherwort - if the Carnitine does not totally resolve your symptoms they will help. Good luck !

    • audrey97605
      audrey97605 linnet2012

      Posted

      Hi linnet 2012

      That's horrible . I never knew the labs wouldn't show even thou you had all the symptoms . What a horrible experience ! I have hyperthyroid but have been told not Graves. Sometimes I wonder what I am experiencing is from the hyperthyroid or something else . My GP assures me it's got to be thyroid . The Heart rate is annoying especially in the middle of the night. Fall asleep ok but then wake up suddenly from

      Heart sad

      I am getting some expensive Motherwort next week...  Are you doing better now ? 

      Audrey

    • jessm014
      jessm014 linnet2012

      Posted

      I'm sorry to hear you suffered for so long.. I can't quite wrap my head around why the symptoms still exist when bloodwork shows decent or normal results, did you just wait it out until your levels showed something was wrong? I thought that once the thyroid was regulated everything would get better but the better the levels the worse I feel, makes you feel even crazier! It sounds like self treatment is the best route to go for symptom relief, I had read a bit about it but the internet can be so misleading so it's nice to hear from ppl who have actually tried and have had success with it. I've never heard of those herbs but I'm certainly going to look into it! Thanks so much!
    • jessm014
      jessm014 audrey97605

      Posted

      I often wonder the same thing Audrey, there's so much that goes along with hyper every time a new symptom appears I get so worried theres more going on than just thyroid issues and it's hard to get that guarantee from a doctor who sees so many different cases. Omg I hear ya, sleeping is so difficult with a racing heart and of course then the mind starts to race in worry, so many nights I've felt like I was having a heart attack.. It's really scary! Are you receiving any treatment right now? Hopefully things get better for you and the motherwort helps! 
    • audrey97605
      audrey97605 jessm014

      Posted

      Hi Jess.. I just started 5 Tapozole once a day . 2 weeks ago...  Not sure yet if it's helping or not . I have had all kinds of symptoms .. Right now I am trying to get strength back ... Muscular system took a beating ... With weight loss... Are you treated yet ???? Audrey
  • linnet2012
    linnet2012 jessm014

    Posted

    Yes thanks Audrey, doing much better. My heart rate was crazy and erratic when I first took this. I shook so much I was unable to walk !!Every blood test came back normal and my GP did them every week. I GAINED 5 stones over 4 months. I ended up in the neurosurgical ward cause they thought it must be a cervical compression. Even in hospital my blood work was normal.I knew I was sick and that it was not a spinal problem. ( always had back issues - so well used to that ) Signed myself out and was seen at the AECC in Bournemouth ( where they train chiropractors ) After many tests they scanned my thyroid and it was wildly inflamed. Took another 3 weeks until I got a positive blood test. Just before diagnosis I started to lose weight and lost two and a half stones in 10 days ! Until recently I could be really symptomatic but still have normal blood work. Been a nightmare 4years but I have many own treatment regime now and am symptom free !
  • linnet2012
    linnet2012 jessm014

    Posted

    Yes Linda - I believe I have Hashimotos. Although my blood work was initially normal, I now have high TPO antibodies. No Graves type antibodies. I have a few nodules too. Because my blood has varied between normal, then eventually not normal I have had real difficulties with diagnosis/treatment. I ended up with a dreadful GP and worse Endo who totally ignored the whole history. Even when my T3/4are high ,Carb puts me hypo in just a few weeks. I think( private Endo agrees ) that I have a form if Hashis that just has not burned out leaving me intermittently hyper. I just have a system now and it's worked well for about 7 months. I used to have a constant sore thyroid area and choking sensation. All gone now thankfully and I only have minor transient symptoms. Been a long haul though and I would love some proper answers !!
    • linda187
      linda187 linnet2012

      Posted

      I am not familiar with the use of L-Carnitine for Hashimotos. I know hyper patients benefit from it a lot and so do hypo patients to a lesser extent. I would suggest asking your doc to test your Free and Total Carnitine levels so you can decide if it is beneficial for you to take. I think Hashimoto's can go either way - hyper or hypo.
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