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Still dealing with symptoms

Posted , 4 users are following.

cheryl08343
cheryl08343

It's been almost a year and I am still having symptoms even tho my thyroid levels are normal I still will get real antsy and my heart rate is still unpredictable I am still taking atenolol very small doses I am at maybe 4 mg daily my heart rate will get high without it the cardiologist says my heart is fine and that something happened during my thyroid storm to set my heart rate off and hopefully with time my body will get better and even itself out anyone else going through this it is discouraging I have seen improvement and I am able to do more more stuff and I do feel a lot better but it's almost a year and I'm still not all the way better I was vitamin D deficient I started taking supplements and now that's normal

0 likes, 32 replies

32 Replies

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  • Samy3
    Samy3 cheryl08343

    Posted

    Hi Cheryl sorry to hear that u still having symptoms I'm in a same boat been a year now I'm euthyroid not on any medication got goiter without noudles but it still hurts and I fee tender when I say these things to doctors and endo they just brush me off saying they haven't got all the answers like u I'm bit better but still symptomatic got indigestion issue now too it was there since I been diagnosed pharmacist says its all ur metabolism and its bcs of ur thyroid but doctors don't believe endo taking my case a bit further with all the results of MRI and scans too to discuss with the senior specialists and radiologists that y its happening I will let u know what their answers are I'm taking my supplements too ...praying and hoping that we do feel better soon....luv ...samy

  • linda187
    linda187 cheryl08343

    Posted

    You could have an adrenal reason for your thyroid problems and you can get tested for this to see if this is possible. For myself, though I have been on antihypertensive meds for years before I got Graves disease, in the last year I developed what is known as Isolated systolic hypertension where the top figure (systolic) measurement is high and the bottom figure (diastolic) measurement is very low. This apparently is due to aging and I am waiting to see a cardiologist to change my antihypertensive meds. However, when I get palpitations, I take a low dose of Propranolol.
    • Samy3
      Samy3 linda187

      Posted

      I even myself Linda went to GP yesterday bcs I was having palpitation and told her that I get my hand numbs whilst I. Sleeping and she sent me back home saying its anxiety and take this propranolol
    • linda187
      linda187 Samy3

      Posted

      The propranolol will help the palpitations but you want to know the cause. It sounds like you have carpal tunnel syndrome with the numb hands. I had that for years and finally my doc sent me to a plastic surgeon who specializes in hands. She did both my wrists and never had it return.  There is a doctor where I work in Genetics who is studying the genetics of carpal tunnel syndrome in children. 
    • Samy3
      Samy3 linda187

      Posted

      I said exactly the same thing to my doctor she said patients gets numbness in their hands bcs of anxiety and I asked her there should be a reason behind anxiety too bcs I never had this numbness issue before graves
    • Samy3
      Samy3

      Posted

      Linda did u ever had indigestion issue bcs of graves?
    • linda187
      linda187 Samy3

      Posted

      I had an H.pylori stomach infection.
    • Samy3
      Samy3 linda187

      Posted

      That's what I been tested for recently but haven't got the results yet

    • madge1979
      madge1979 linda187

      Posted

      Hi Linda ....

      Didn't know you had carpel tunnel syndrome ... I'm pretty sure if got it too now !!

      Is it connected to Thyroid.... as my family members with Thyroid diseases have it too ..

      How did they treat you for it ?

      Hope you're well x

      Mx🌹

    • madge1979
      madge1979

      Posted

      Meant to say ... I think I've got it too now ..

    • madge1979
      madge1979 Samy3

      Posted

      I never had the numbness in my hands or pins and needles or pain round my wrists before I had Graves either Samy ..

      It looks 👀 Like that's might be what I've got ! Great !!

      Just what I've always wanted !

      Mx🌹

    • madge1979
      madge1979 linda187

      Posted

      I also had H pylori infection .. but was treated with antibiotics and omeprazole .. hope it's never comes back

      Mx🌹

    • linda187
      linda187 madge1979

      Posted

      Actually I had it long before thryoid disease.  My doc would send me to an Orthopedic surgeon who would do neurological testing of my nerves, showing it was getting worse and then saying there was nothing he could do for it.  When it got soooo bad, I finally said to my doc, "look my brother had surgery that addressed it and so did a lot of other people.  Please refer me to someone who will do surgery."  So he asked around and this lady's (plastic hand surgeon's) name came up by all his colleagues.  She was great!  Got it done in an hour and went back to work.  Didn't even need painkillers afterwards and was using my hand the next day.  She said, "boy was your nerve glad to see me".  Been fine ever since.  You have to be careful though.  My brother told me about a friend of his who had surgery done and was not able to work ever again.  Clearly that surgeon was not skilled in this type of surgery.  Get someone who does a lot of them and has a good reputation.  She told me about a product that eliminates scars and it worked very well.

      My co-worker was saying that they are finding that this problem goes along with metabolic issues.

    • linda187
      linda187 madge1979

      Posted

      I have had three courses of antibiotics and omeprazole but they do breath tests afterwards and it had not gone.  Some people need up to four treatments.  I just had a breath test done and don't know the results yet but if they are still positive, I am going to go another route.  I don't want to take another antibiotic.

    • madge1979
      madge1979 linda187

      Posted

      No ! me neither  Linda .... fast track to destroying your immune system !

      what was your op like on your wrists ..  my hands are very painful especially the right one....  all fingers , specially thumb   and .....up outside of hands to elbow.

      im seeing a neurologist on Saturday .. hoping he can help me

      as its becoming  very dificult and painful to use my hands.

      God help us... 

      mx🌹

    • linda187
      linda187 madge1979

      Posted

      Wish you were in Toronto Madge.  My hand surgeon is the best in the world!  No pain, very quick, had it done under local anesthetic at lunch time at the hospital across the street from the one I work in and went back to work.  A month later had the opposite wrist done though it wasn't in as bad shape as the first.  She even gave me instructions on where to get a special material at half price that eliminates scars.  To this day, you cannot see a scar where she cut.

    • madge1979
      madge1979 linda187

      Posted

      Oh my God  i wish i was in Toronto too !   haha

      ..... i've been reading about the op.... just now.

      and it scares me ...   but i'd do it  .... as i waken a lot with the numbness and pins and needles .. tingling with shooting pains upward to elbow !

      i hang my hand out the bed half the night  !  🙀

      i always thought it was neuropathy from Graves .. but now i'm euthyroid and most symptoms are gone ...  i'm thinking it's CTS .

      .l actually cried there ......because i used to hold my hands out to dr. to show him exactly where the pain was ..... and  ask him to help me  ....l but he missed it    haha ....

      along with all the other bloody symptoms  he missed with Graves.

      thanks Linda ...  you're a 🌟

      ......as always

      luv M x🌹

    • linda187
      linda187 madge1979

      Posted

      Check around your area and see if there is a plastic surgeon who specializes in hands.  Otherwise it would be an Orthopedic Surgeon.  Whomever it is, you can check their reputation.  Pick one who does a lot of this type of surgery.   Mine hand was like yours.  It just kept getting worse until I didn't have any feeling in my hand anymore.

    • Samy3
      Samy3 madge1979

      Posted

      Hi Madge hope u OK I'm really fed up with doctors and endo now bcs first when I went to them for ear and jaw pains the endo said thyroid got nothing to do with ur ear or jaw and guess what as soonest my thyroid level become normal slowly my pains went away I still get it on and off when my thyroid becomes tender and painful which is right now and numbness like u said I got it know from the last few months but they don't believe its bcs if thyroid and my h pylori test came back normal today may be bcs I already just finished my antibiotics and the course of gastric tablets

    • Samy3
      Samy3

      Posted

      But yes my left hand is really bad and wrist I even have to ask my husband to massage it and at night I do the same thing like u do when they become numb ...Madge like Cheryl said that she is stll got symptoms like me not the worst one but is that possible that u get symptoms with graves even u euthyroid ....?bcs I'm getting them they never went away completely apart from when I was on carbimazole but since they stopped it I been getting them on and off like pain behind shoulder and in my leg muscles feel so lethargic if I don't eat for few hours numbness tender and pain in thyroid etc ....sorry just want to get more info from u and Linda ..so I can tell the doctors would be very grateful for any help thanks .....samy

    • linda187
      linda187 Samy3

      Posted

      My carpal tunnel was not connected to my Graves disease.  I got it when my thyroid was functioning normally and had it for many many years.  It just kept progressing and getting worse.  Some people do feel it is connected to metabolic syndrome though, i.e. hypertension, diabetes, insulin resistance.  The first treatment they give you is to wear a wrist brace, especially at night.
    • cheryl08343
      cheryl08343 Samy3

      Posted

      Mine never went away even when I was on methimazole I still had symptoms. Now they aren't as bad but still dealing with them. My heart rate is the most annoying. I can't do much because it goes high but I'm sick of being on the atenolol. I'm down to a very low dose but It's the face that I'm still on it. It's been A very emotional year and this is not only taking its toll physically on me but mentally too. I want to be better!!!

    • madge1979
      madge1979 Samy3

      Posted

      samy ..  apparently the thyroid hormone is still in your system even after treatment and can take some time to calm down and leave the body .., have you tried taking L Carnitine ... which works in the same fashion as Carbimazole ...  Google   ( L Carnitine and Graves disease ) to find out all you can and maybe you would consider giving it a go..  if you feel you could.

      I took it to wean off Carbimazole... and i'm sure it was successful then my supplements built my immune system back up..  only thing i really feel is this 

      Carpel tunnel in hands ... it's driving me nuts ! 🙀

      ill tell you what the Neurologist says at weekend .. maybe we can get some info then.

      I know what you mean about feeling weak and muscular pain .that went away with me  .... B12 and magnesium mostly responsible

      have you had bloods done for B12 deficiency or Magnesium deficiency or D3

      ask your dr to  tests your bloods ... get them done very early morning and don't eat at all only water before 

      come back on here and print out your results  entirely  and see what 

      we all have to say about them ...

      take care luvvie

      mx🌹

    • cheryl08343
      cheryl08343 madge1979

      Posted

      I was vitamin d deficienct and after I got my levels back up I feel so much better. I agree that you need your levels checked
    • madge1979
      madge1979 cheryl08343

      Posted

      Cheryl  what about other vitamins ...

      do you take B12  B1  and B Complex ...   many of us take these ...

      and more ! 

      it may not be regarded by Doctors to be correct to do this  

      i.e.  self medicate ..  but i can tell you i wasn't even offered Aspirin to help me ... that's why i went on a mission to find out what would help me build up my immune system and get it to leave my Thyroid in peace ( and me ) ...and it all worked .  

      when you become HYPERthyroid ... you lose so many nutrients vitamins and minerals from your body because of the speed at which you are going and the stress that your body is under .., much more than you can even imagine 

      i was at rock bottom mentally and physically but i had no idea what was wrong with me ... until i got that diagnosis and then i realised how low i was 

      ..... and nothing was being done to help me ...  so 

      i empowered myself  and .... got well again..    with the help of one or two good souls on here ..   

      luv m x🌹

    • Samy3
      Samy3 madge1979

      Posted

      Thanks Madge did ask doctor to check vitamins deficiency they only did vitamin d3 and b12 ....d3 is 49 range 50to 150 and b12 233 range is between 180 to 700 don't know weather they good enough for me other vitamins he said we don't check those ....a crap answer

    • Samy3
      Samy3 madge1979

      Posted

      Madge my thyroid hurts badly gives me so discomfort ...I got goiter enlarged I don't know may be I still got symptoms bcs of goiter even my results are normal...

    • Samy3
      Samy3 madge1979

      Posted

      Pls let me know Madge what neurologist says ....bcs my endo said if there s a relapse it will be within a year again and I'm already getting those symptoms ....they hardly went away completely ..and slowly and gradually they getting worse ...last time I had my blood results were 2 months before my tsh was 1.39 and t4 was 16.7...I'm gonna ask them to check these again .but I want to feel myself back again

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