Just found out I am hyperthyroid going to get it removed??

I wrote here a few weeks ago thinking I had hashimotos, but I just found out that my labs are are extremely hyperthyroid (could be early hashimotos). I've been crying all day thinking that now I'll have to have surgery to remove it and honestly I think I will. It has been 4 years of this thyroid dance and I'm just ready for it to be out of my body. As of right now I'm so sick I can hardly take care of my children. The odd part is, I have a hard time losing weight, and my temp is never higher than 96. If I can just take NDT and have a body functioning at 75 percent, I would be happy.

Are there any people here who have had theirs removed, and are somewhat functioning like normal?? I can't take this anymore.... feeling like maybe my body should just shut down and die already. Thank you for reading...

20 Replies

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  • What are your labs? Could you post your results with ranges?

  • I'm being sent my labs and I don't remember what the ft3&4 were other than at least 2 points above the range for both. My tsh was 0.4, which in the last 4 years isn't really that abnormal for me. I seem to swing between .5-1.2. I just thought for sure I would be super hypo. I just find it weird I have hypo symptoms too, but i guess every body is different.

  • Are you still taking that iodine? And have you had your antibodies tested yet? Both iodine and Hashis antibodies can cause you to be hyper.

  • Yes, I had it tested and had no antibodies. And I havent taken iodine in eight months. I'm just so confused. Could it be that postpartum I just went hyper and it's been that way ever since?

  • No, I don't think so. You can't be hyper with a TSH of 1.4.

    However, just because you had one negative antibody test, doesn't mean you don't have Hashi's. Did you just have the TPO antibodies tested? Or did you have the Tg ab as well? It only takes one high one to make you Hashi's. And, antibodies fluctuate all the time, so you need to have the done at least three times.

    And, even if both antibodies are negative all three times, you could still have Hashi's. Because not all Hashi's sufferers have high antibodies. They are diagnosed by ultrasound scan. Have you had a scan?

  • What was your t3?

  • I had my thyroid removed 15 years ago due to hashimotos.

    When it first started I didn't know what was happening to me,I was obviously hyper as I lost a stone in weight,couldn't sleep,very anxious.

    Then when a lump came up on my throat the doctors found out what it was,it was getting bigger and I had trouble swallowing, so i had it removed.

    They make it sound simple,you have it out and just take thyroxine to make up for it, but it's not quite like that.

    I often think maybe I should have waited and looked at other treatment,as it takes a long time for your body to settle down,it's a shock to the system.

    It's also a battle with the doctors to get the type and dose of medication you need.

    Then you get it and are o.k. for a while and now they decide they want to take the T3 away from everyone, and not many doctors will prescribe NDT.

  • You're so honest I could just kiss you ...

    I hope everyone's listening to what you just said ... good luck sweetie ...

    Luv mx🌹

  • On the assumption that you have Hashimoto's Thyroiditis I'm puzzled that you jump straight from diagnosis to assuming you will have to get your thyroid removed. The problem with Hashi's is that people swing from being hypo to hyper and back again as the thyroid antibodies fluctuate in numbers and activity level. The fact that your temperature is always low suggests to me that you will end up permanently hypothyroid eventually. Low temperature is commonly associated with hypothyroidism not hyperthyroidism.

    In true hyperthyroidism, without treatment, the thyroid over-produces thyroid hormones permanently.

    In Hashi's, antibodies attack the thyroid, kill cells of the the thyroid, and when the thyroid cells die they release their stored thyroid hormones into the body/bloodstream. During a phase when antibodies are high in numbers and very active, and lots of thyroid cells are getting killed, the amount of thyroid hormone in the blood can become very high and people will be hyperthyroid according to blood tests, but it will be temporary.

    Obviously dead cells will never produce thyroid hormone again, and so over time the thyroid gets smaller and smaller. Eventually people end up hypothyroid permanently because there is no longer enough thyroid left to produce the necessary hormones, with or without the antibodies.

    Some people find ways and means of dampening down the antibody numbers and their activity. Dietary changes and supplementing nutrients of the right kind are a good place to start. For many people going religiously and ruthlessly 100% gluten-free (no cheating at all) will lower antibody numbers and activity and they feel a lot better.

    For some people eliminating gluten has no effect.

    The second thing to try is giving up animal milk products i.e. butter, cheese and yoghurt. The things you are eliminating by doing so are lactose and casein. I don't know which is the important one.

    There are other options regarding diet - I don't know who tries them e.g. eliminating nightshades, low-histamine diets, and there are probably others.

    If you try any of these dietary changes, and if you discover they have no effect, then start eating the things you've eliminated again, otherwise your diet could become dangerously restricted.

    I know that 200mcg (or is it mg?) selenium daily is supposed to help. Avoid iodine like the plague.

    For more info on Hashi's, look for info from Izabella Wentz. She has a website, a Facebook page, and has written a book which gets good reviews on Amazon. You will also find some videos of her on Youtube.

  • SeasideSusie has written some useful info on autoimmune thyroid disease (i.e. Hashimoto's - but UK doctors don't use the name Hashi's), with lots of links to investigate on the first reply in this post :

    healthunlocked.com/thyroidu...

  • I think you're right, and my doctor did say that I probably have hashimotos it's just not showing on the tests yet. She also said that she has no idea when my thyroid will burn out and I'll just become hypo. Honestly, I've tried most everything. Extreme dietary changes (I've been dairy free for years), gluten free for at least 6 months, -again no change. I've been sugar/ caffeine free for almost as long as I've been dairy free. Two years ago I was given the beta blockers to help but they made me feel million times worse. i do take 200 of selenium and it helps my swollen thyroid a little, but that only lasts a little while. ive done b12 shots and treated my adrenals gotten my vit d optimal. If this could take YEARS to burn out my thyroid I honestly think I would worry that i would kill myself. I have a really good doctor that said she would prescribe me naturethroid or armor. I know it would suck to go extremely hypo I just can't live like this for another 4 years.. or 10 with little if any treatment options.

    I feel like this is my only option if I actually want to have any kind of a life. I shake so bad most days I can barely hold a glass of water. And I've had that for 4 years. And I'm so young!

    I should be getting my results tomorrow, and I'll post when I get them.

  • Have you ever had Trab antibodies measured? There are some people who have Hashi's antibodies and Graves antibodies which gives people a condition called Hashitoxicosis. I don't know much about the combined condition, but I know it is not pleasant. I would have expected your Free T4 and Free T3 to be higher and your TSH to be lower with this condition though.

    For info on the various different kinds of thyroid antibodies :

    labtestsonline.org.uk/under...

  • Professori ... we bow before you ...

    Mx🌹

  • Hahaha, thanks :D

    If you want to learn a lot about the thyroid, I would recommend this book :

    amazon.co.uk/Your-Thyroid-H...

    Note that there are usually lots of entries for this book on Amazon and the price varies immensely, so check carefully before buying if it interests you.

  • Hi I am 13 years post thyroidectomy for cancer. I was diagnosed and had surgery within 2 weeks of a dr spotting a lump in my neck. My health has never been the same since and dependance on an artificial for humans hormone whether it is pig or synthroid is anbongoing health journey. Was coping fairly well on 200 mg levo until 2 years ago hitting Menopause but have not been able to sustain working and raising a family! I start jobs get ill and then have to step down.Past 2 years health deteriorated, GPs constantly want to reduce my levo cos very low THS.03 and high T4 but my sypmtoms are hypo not hyper!!! But I have sometimes a mixture at times, heart does race and can have anxiety! Over all though feel so hypo to the point I am now not functioning, unable to work and barely able to do lifes basics such as shower, dress and cook without being utterly exhausted! Even pains from knees to feet that stopped me walking for 3 months which Drs in 3 countries insisted was planta faciitis! But had in both legs!! I am sharing this not to scare you but to encourage you to try the altenatives just incase they work.

    With u on this confusing journey. Read both Dr Sarah Myhill and Dr Isabella Wentz which has helped me understand my condition more. Thoroughly recommend!

    Removing your thyroid means you will be utterly dependant on Drs and artificial thyroid supplements for ever.

    I know how desperate you feel, my kids were 4,5,8 when I went through removal and RAI treatment.

    Try Dr Isabella's diet Advice first combined with Dr Sarahs supplements available in UK.

    If I could turn the clock back and had the knowledge I have now, I wld have tried a partial thyroidectomy first with careful monitoring. Your own hormones have to be better than a pigs or artificial synthroid if at all possible.

  • Very sound advice SARAH and kind of you to share all that ... I hope you are well and that you stay that way ...you were very brave ....especially with your little family ...

    Luv mx🌹

  • I just got my results back

    Tsh 0.034. Ref 0.5-5

    Ft3 6.91. Ref 1.4- 3.4

    Ft4 1.9. Ref 0.5- 1.3

    Thyroid peroxidase antibody 0.7

    They didn't test me for graves like I asked :/ but I see a new endo on Monday..

  • By the way I wasn't on any thyroid medication when i got these done.

  • Hi Kate, it might be a good idea to google Lorraine Cleaver and the Scottish Thyroid Petition and have a good read of her own personal story.

    Jo xx

  • I understand your delima. I had mine removed 5 years ago due to cancer. Having No thyroid is horrible. It took me 4 years to get my meds and hormones straightened out and missing one dose cam throw everything out of balance. If surgery is mandatory try to find a surgeon that will only take half of it out. I have a friend who only had half out and has done so much better.

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