Over or under???

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Hello there, Im sure what I'm about to relay won't be a surprise to anyone on here! Ive been on Levothyroxine for 8 years, never in that time have I felt great but sometimes worse than others. At the beginning of last November my Gp told me that I was over due for a blood test, so I asked her to make sure she tested T3 as well as T4, she then came back and told me that I was on too much medication and I should drop it slightly, I was quite surprised but did as she said, a month later I started to feel unwell, this went on for a time and in the past month things have gone from bad to worse, I have never felt so bad. I have gained quite a lot of weight, can't go to the toilet, cant sleep, have restless legs, horrendous pains from my shoulders to my finger tips, incredibly tired, confused sometimes and have no memory at all, I seem to have lost my sense of taste and I noticed that my neck seemed to be swollen and it feels as though someone is squeezing it when I swallow. My arms, hands and feet are like ice and I can't seem to get warm, I have blurred vision and very sore, weepy eyes. I went back for another blood test 5 days ago, when the results came in the GP rang me, I was expecting her to say that I needed to increase my dose but instead she again said the opposite. I asked her to tell me what the results were and she only had the results for the TSH, which was 0.24, nothing for the T4 or T3. I asked her what the initial results were from last November and she only had the T4 for that and it was 17. I realise this all points towards Hyperthyroidism but I don't believe this is the case, I have had hyperthyroidism before and I was skinny, ate constantly and had palpitations, none of that now. I went back to the GP today for more blood tests, they said they would test everything but they said that before. Could anyone shed any light for me, is it possible that I am over with the symptoms that I have? Like everyone else, I just want to sort this as its causing me huge problems. Many Thanks.

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  • Posted

    The only thought I can offer is that due to the tightness in your neck you should definitely get some form of diagnostic imaging done there. Also, I would get referred to an endocrinologist as many GPs only look at a few factors and are not too smart about thyroid problems.
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  • Posted

    I second daves comment - get referred to an endocrinologist. 17 for T4 levels isn't that high. I've been told by my Gp the top of the range is 22 and I was on 24 which he wasn't massively concerned about as I was feeling better at that dose. The ranges do vary across the country depending on your surgery but that level isn't ridiculously high. Tsh doesn't say much on its own so you are right to ask for T4 and t3 results.

    Most of your symptoms do seem to suggest you are underactive and not on enough medication at the moment. However every time I have been asked to reduce my dose I have felt like this and the symptoms have only started to improve after at least 8 weeks. So it's worth giving it the full amount of time, but if you still feel awful then your dose probably isn't right.

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    Heidi, synthroid worked just fine for me for thirty years. Putting all a person's problems down to synthroid is not helpful. It sure is a solution for lots of people so please bear that in mind if you are told it doesn't work.

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  • Posted

    I wish I had answers for you! However, I can tell you I was put on a Medrol dose pack last fall for a severe headache after I had fallen and hit my head. I was also tried on armour thyroid at the time. I thought I had gone hyperthyroid over night. Low and behold it was the combination of medrol and armour that made me want to jump out of my skin. Anyway, I was taken off my synthroid and my blood tests remained normal for months and are still basically normal. TSH is beginning to rise only slightly and my T4 is low normal. Yet, I am bedridden with severe arm weakness and pain. They ache terribly bad after eating. My legs hurt the same. My eyes are teary and vision is blurry all the time. I have severe headaches, and when I try to walk my legs and arms feel like lead and I can't breathe. I was just diagnosed with POTS syndrome as well, my heart goes crazy. I've been a runner and have lifted weights for years, so this really bothers me. I was on synthroid for four years. If I take the synthroid I begin to feel better, but go hyper before I get stable. I think our bodies get used to a dose of medicine and when we change it our body goes crazy. Your symptoms sound exactly like mine! I am trying to get back on the synthroid because without it I feel like I will die, and this is not an exaggeration. My husband has had to hire a caregiver for my three year old because I can barely take care of myself.

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