I need help! I had 1/2 thyroid removed & was told I had graves disease. I've still been very ill, but blood work is normal so they say Im ok

Long story, but please help me. Since I was a baby I had health problems, but none that anyone could explain. I was diagnosed with exercise induced asthma, because my heart rate would elevate & I'd start hyperventilating with any type of activity. They did hundreds of EKG's, tests, pace maker, etc., until there were no clear answers & they told my mom I was looking for attention. I would pass out or black out during PE everyday, but still told me I was fine. I always got sick with sinus infections, bronchitis, upper resp. Infections, pneumonia. I'm talking more than 5 a year it was like every month, even to this day. Everyone told me I had bad allergies & asthma which caused me to get sick easily. 2000 I was diagnosed with tachycardia & put on med. They found a lump in throat Sept. 2013 & blood work said mild hyperthyroidism. I started loosing weight rapidly, still getting sick a lot, depressed, fatigue, weak, etc. They removed nodule nov. 2013 & found that the 1/2 of my thyroid with nodule was very badly scarred so they removed it. They told me they couldn't see the other side because they were only working on that one side, but if my blood work ever shows anything they will remove it. They told me I had hashimoto or graves disease. I still have all the same symptoms, but blood work is fine so they tell me there's nothing they can do. I've been to 5 specialist, had 2 surgeries, & several tests this year & still no answers. I know I'm not crazy. I'm tired of being sick please help!

PS I forgot to mention the chronic constipation that I've had since baby too & they are thinking about removing my bowels and my 10 mth old baby seems to have a lot of the same problems already.

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13 Replies

  • Welcome to the forum, Emmasmommy.

    Can you post your recent thyroid blood test results with the lab ref ranges (the figures in brackets after your result) as it will help members to comment. Did thyroid antibody tests show you had Graves and Hashimoto's? It's uncommon to have both but it does happen.

  • He just said I had one or the other because of the way my thyroid looked when he removed the half. I got no real answers or information on either disease. I also didn't get my results he just told me they were fine.

  • Emmasmommy, you need to contact the doctor's office and get copies of your results. Without them its not possible to advise whether or not your health issues appear to be thyroid related.

    Antibody blood test is the only way to determine whether you have Graves or Hashimoto's, but Graves presents with hyperthyroidism (overactive) and Hashimoto's with hypothyroidism (under active) although Hashi's can swing between hyper and hypo.

    As you have a remaining lobe either of the autoimmune diseases can continue to attack your thyroid causing it to over or under perform.

  • Thank you and I meant to say mine was hyperthyroidism not hypo. I will see about getting my results anytime ive tried they tell me they can send them to other doctors but not give them directly to me. I'll call tomorrow.

  • Hi, the doctors are lying to you. You are entitled to your blood results if you wish them, freedom of information.

  • Wow your story is very much like mine, lots of unexplained illnesses when I was a child, always tired, fast heart rate etc. I was diagnosed with Graves about 6-7 years ago. My thyroid levels are 'normal' now but I think the thing is when you have an autoimmune disease you will never feel 100% well because our immune systems are constantly attacking our bodies.

    Definitely get them to test your antibodies to confirm whether you do in fact have hashis or graves.

  • The problem I'm having is finding good doctors, because after I woke up he told me exact words, "your thyroid we removed was severally scarred and very gross which means you have a disease called graves disease or hashimoto disease, but you should be fine now that we removed it just keep an eye on your levels. I said, "what about the other half wouldn't it have the same thing why didn't you remove it." He said, "there's no way to know with out my going in to that side & then you would be on medicine forever." He then left and never made his self available again. I've only seen his nurse practioner since. She did a catscan of sinuses and allergy testing to see if it's allergies causing my illnesses, and blood work. All came back 100% fine other than low hemoglobin which I have been on iron pills in the past for and that didn't help (and I eat greens everyday) I told her it makes no since that since 2014 I have had bronchitis 3 times, pneumonia 2, upper respiratory 2, & that's the major stuff. She told me there's nothing they can do so go to my family doc. I never seen results and they never answered any ?'s. I've only got info through Google.

  • Unfortunately most NHS doctors are pretty useless with this sort of thing, I've had to ask for all the tests I wanted doing. If you're really getting nowhere there are some private specialists around who have helped many on here and u can get a list from Thyroid UK.

  • Thank you I will look lnto that.

  • We are entitled to copies of our blood tests. From now on always get a copy for your own records, with the ranges, and so that can post if you have a query.

    Just ask the surgery for a copy of your thyroid gland blood test results.They cannot refuse. If you've had ones done at the hospital, they always send a copy to your GP. Never take 'normal' as a diagnosis when we feel less than normal usually. Always get a copy.

  • Thank you. I am trying to get copies I appreciate all the help.

  • Thank you. I am trying to get copies I appreciate all the help.

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