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Hypo with TED

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lauram1993
lauram1993

Hi all. I'm 24 although I don't feel it. Iv been suffering with thyroid for years now. Had rai when I had ted but was given steroids along with it. Years later still under a consultant at the endo, I'm still no better, infact worse.

The ted originally calmed down after rai, but over the years has Become worse, along with my health not just appearance. It's affecting my daily life as I have wide bulging eyes and look like I'm high on my head on something. It's caused me a thyroid storm, heart syncope and anxiety. I constantly bleed so have to take tablets to stop that. My hair is still thin and falling out, suffer with the ends of my shoulders as mad as that may sound and my knees and calfs. Hands and feet. It's affected my teeth! im always frozen, lost appetite but still gaining weight, constant headaches,seem to bruise very easy.backache. I just find myself sleeping my days away.The list is endless. I am due to have cosmetic eye surgery( optical decompression) and currently on 125mg Levo. Was just wondering if anyone else has the same symptoms with their thyroid?? I know some of the symptoms are related and part of the thyroid, but some aren't. Just wondering if anyone else experiences these horrific symptoms. Tried to put down as much history as possible. Have no blood results at hand at moment. TIA 

0 likes, 7 replies

7 Replies

  • diane2619
    diane2619 lauram1993

    Posted

    Hi Lauren 

    Oh my gosh - about 90% of what you said rings true

    •diagnosed with thyroid related eye disease - under Moorfields 

    •drooping eyelid / blurred vision

    •inability to lose weight despite being under dietitian and on 800-1000 cals 

    •pain in shoulder ends / ankles / calves/ hips / back and thumb joints (diagnosed as having osteoarthritis in all those points) 

    •serious fatigue

    •cold In extremities 

    •migraines 

    Was referred to endocrinologist and seen in March 17 but she didn’t want to know. I took thyroid uk checklist and she didn’t even look at it. She asked what the one thing I was most concerned about - hypothyroidism is not about ‘1’ symptom - ARGH!!!

    My GP now referred me to a new endocrinologist who I will see next Friday 

    I have swung Hypo - hyper - Hypo - hyper and currently on way back to Hypo since January 17!!

    Currently on 175mg levothyroxine 

    (Had breast cancer August 15)

    Desperate for help in losing weight but last be said ‘I think the thyroid is to blame for weight gain but I can’t say it’s stopping you from losing’ REALLY!!! 

    Very frustrated 

    Lack2619

    • lauram1993
      lauram1993 diane2619

      Posted

      Hi Diane,

      Thanks for replying and I'm sorry to hear that. 

      I agree, It's very frustrating. Iv seen multiple consultants and they were all telling me different things.

      Finally ended up having one consultant but I'm still not better and even with the surgery that's only helping my eyes. 

      I don't think most of them are actually fully aware about the thyroid. 

      Iv sat there telling them about my thyroid and they've had to get their medical book out and look, that says it all. 

      I don't understand the pains though either and you have them too, I thought I was the only person, people looked at me like I was mad when I told them.  I can't understand it. Literally the very ends of my shoulders hurt to touch. Not every day though. It's really getting me down though now.  Can't remember the last time I felt good and healthy.  

      Hope you can find something  to help!!. I'm going to ring for a closer appt and get on at them. 

  • Anonymous111
    Anonymous111 lauram1993

    Posted

    What was your latest FT4 and TSH?

    Good luck with the Surgery - I hope you get the result you want. smile

    • lauram1993
      lauram1993 Anonymous111

      Posted

      Hi Ben. 

      Thanks for replying.

      I haven't got any of my results, but the last time I was at the endo clinic I told them about the symptoms and they said the thyroid levels were okay but, the blood results was three three months old . At that time of the blood test they told me to mix between two doses which were 100 / 125mg. And they request blood results for thyroid function.  

      And thank you, although I'm not looking forward to it but I have no choice. Hopefully I will finally have small normal eyes again. 

    • lauram1993
      lauram1993 Anonymous111

      Posted

      Hi Ben.

      Thanks for replying.

      I haven't got any of my results, but the last time I was at the endo clinic I told them about the symptoms and they said the thyroid levels were okay but, the blood results was three three months old . At that time of the blood test they told me to mix between two doses which were 100 / 125mg. And they request blood results for thyroid function.  

      And thank you, although I'm not looking forward to it but I have no choice. Hopefully I will finally have small normal eyes again. 

  • maria62647
    maria62647 lauram1993

    Posted

    Have checked if you have Hashimoto? Because I’m like you right now. Literally. I’ve been out of doctors office like crazy. And they keep telling me the same thing. That my T4 and TSH are fine. But in reality my body is a war inside. This May till the end of August I had 24/7 tension headaches sometimes it will get bad. I ended up going to the ER to do and MRA but they didn’t want too, so they just sent me home and told me I didn’t show risk. That it was migraines. When I told them it wasn’t. Anyways it escaped to high blood pressure, dizziness, lost appetite, anxiety, panic attacks, hair loss etc. and actually I ended up loosing weight. I am currently 94 lbs and I’m 22..... it scares me because I look unhealthy. And I’m trying to figure out what is the cause of that. But the rest I went to see a specialist who looks into hypothyroidism and Hashimoto, well a week before that I went to the clinic to ask what was going on and when I checked in my blood pressure was out the roof! I was dizzy as heck and nauseous. I told the nurse crying I felt really bad. They panicked and brought in the doctor right away, they put an oxygen tank, measured my pressure for 30 min and that’s when I lost it I told the doctor I’ve been requesting for blood work to check if I have Hashimotos because I have a strong feeling that’s what’s going on! She listened...idk how. After going so many times to that clinic. And yeah my Antibodies were high. So that’s when I went to a specialist, but he told me treatment was 5,800 for 4 months.... and at that time I was dealing with the hurricane mess. So I’m waiting for this year to see if I can go back or try looking somewhere else for something a little bit lower.... but when I sat down to talk to him he told me to go gluten free, remove soy and dairy. And slowly start from there. He was going to put me on different supplements, shakes, etc. but I didn’t go back cause of money. However I took what he said I’m doing that slowly but it’s hard because I don’t have the right person to tell me if I’m on the right path or what else I can do. But I’ve elimated gluten, soy, dairy, fast food (slowly) and sugar! It has helped! But I’m still looking around for answers on my weight loss and to fix my medication because it does make me sick and I know I have to be taken it! 
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