End of my tether

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I was diagnosed with an Underactive thyroid 3 years ago So was out on 25mcg Levothyroxine. However in the last 10 months,due to low thyroid functioning, this has been steadily increased and am now on 125mcg. I have felt awful for theses 10 months. Excessive tiredness,no energy at all,being rundown.I am now signed off work and its having a massive impact on me now mentally. I have seen an Endocrinoligist who has said just to 'bear with it' and really, none of these symptoms are being caused by my low thyroid functioning??!!! (I am 35 yr old female) I feel as though I am being made to think i am over reciting these or just imagining them!! Any advice anyone??! 

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  • Posted

    Hi Caroline, You did not say what you results were TSH T3 and T4. 125 mcgs is high and what I see on this web many people have that high amount who have actually had their thyroid removed. Have you felt better on the medication at a lower dose. I saw one lady one this website went to a doctor who went with how well you feel and not so much the clinical results. Keep going back to your endo. sometimes we just have to keep persisting. I myself was diagnosed three months ago with TSH 20 and they put me on 50 mcgs but I had to go to 25 mcgs as I had racing heart, tremor and headache. Still waiting for my first blood test which my doctor said would be after three months to get meds into my system. It seems to be a bit of a rollercoaster with some people and I am still feeling a bit nauseas in the morning, very hungry and sore muscles and skin, which does seem a bit like morning sickness. No chance of that I am 65 ha ha. Seriously though it seems by what I read you have to get exactly the right dose for you. We are all individuals afterall.
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  • Posted

    Yeah, "bare with it" is unacceptable. Either you are getting too much drug (probably) which causes your pituitary to hypofunction (stop working) or you are reacting to the drug, or you have Hashimoto's and your diet needs some tweaking so you don't constantly incite autoimmune attacks, or it is something else like adrenal problems.

    Because I was in your shoes many years ago and then finally a new doctor did the antibodies test and realized I had Hashimoto's, I'm guessing it's Hashimoto's. I was so tired I couldn't move, all I could do is lay in bed and cry. Not sleepy, just exhausted. But that's just my experience. Good luck.

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  • Posted

    Thanks for that Gillian &rumraisin Yeah I have considered Hashimotos but I just presumed the Endocrinoligist would have picked that up? I just feel like all that is suggested is to increase thyroxine, but the gradual increase has made no difference what so ever. They had thought it may be a Pituitary tumor but an MRI scan ruled that out and I just feel as though I'm banging my head of a brick wall! But thanks for you advice!
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  • Posted

    Thank you guys. I can't remb my levels at hand, but just that my last lot had shown thyroid function had 'lowered' (I also have high Prolactin levils which are connected) 

    well, I had thought about Hashimotos, but I just presumed the Endo would have picked that up by now sureley? 

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  • Posted

    Hi Caroline,

    I'm 22 and was diagnosed 8 months ago, I can't give any amazing advice but I totally understand how you feel, my first 4 months were a blur, I couldn't work, I became depressed and extremely anxious and couldn't do the simple task of opening the front door. I ended up going for cognitive behavioural therapy, took up meditation and yoga. I know none of those three will cure under active thyroid and it's symptoms but it really helped me mentally and as a result I could be a lot further with my doctor. My doctor is useless and thanks to the internet and forums like this I have been taught a lot about the condition. To the point I refused being put down on my medication, which as a result was the best decision I ever made as my latest results came back as under active again. 

    I'm sorry I can't be of better help, but try listening to your body and research and don't take everything the doctor says as the only option. 

    I also went gluten free which really help me day to day and I recently started work again. 

    Hope you find improvements soon!

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  • Posted

    Thanks for that. That's interesting as I had to go gluten free a few years ago for a stomach condition and I would say it didn't help too much. I have also been going to yoga and would agree that it is a massive help. I am starting to come to the conclusion that you def know your own body the best . I just thought that Endocrinology were the experts in this so would be so much more clued up than the GP!  I am glad you stuck to your guns!! It just proves our point! xx
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    • Posted

      I've never heard of anyone going to an Endocrinologist that has been helped. I'm sure someone has been helped by one, somewhere, but where?

      Keep in mind gluten stays in your body for 3 weeks to six months. You can't give it up for a short period of time and see results. You also can't cheat. I am speaking from experience!!! I kept telling doctors "oh yeah I am gluten free" and I really wasn't butI thought once a week a meal with just a little gluten wouldn't make a difference. It does! then I gave up gluten totally (or so I thought) for three weeks. Didnt' see a difference so I didn't think it mattered. It took years for me to figure out I had to be totally gluten free (don't eat tuna, processed hamburger, chili powder or Vit E places gluten hids, among others) in order to be gluten free. I started seeing some results at weeks, but most improvement between six months and a year. Saved my life.

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  • Posted

    That's interesting and Im so glad that worked for you. I was totally gluten free for  a year and a half and all it did was make me really skinny (I didn't need to lose any weight!) after that I wasn't quite as strict but I still try to stick to gluten free options as much as I can. But it's maybe worth me going fairly strict again?

    I suppose I am also just worried of the long term damage this is doing to my body (let alone my state of mind!) when it feels like my whole life has come to halt because of it all. All advice ir really appreciated so thank you 

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