How to help OH understand?

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I have auto-immune hypothyroid and an inner ear infection. I've been on levo since Feb but it's not working and the dr's keep reducing and increasing and then reducing dosage - so I've ended up doing my own dosage for the moment until an appt in 2wks with a homeopath/dr/acupuncturist. My ear dr told me that the mindset helps alot. But without any energy I find I've no positive mindset. My OH doesn't and can't understand this...and I find it impossible to explain how lethargic and how frustrating it is...

Has anyone else been through this? How did you manage to convey how exhausting it feels?

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  • Posted

    Dear Mary...

    All i can say is...mindset!!!...what is he on about....

    The fatigue and lethargy is dreadful...

    I was Put on levythyroxine...for hypothyroid...not given the reason....and it didnt make me better or worse,just different symptoms ..

    So....I decided to come off it changed my lifestyle,no drink,smoke,soya,very limited gluton and avoiding stress ...

    I am at the moment ok....although I know some people have to have medication for more severe reasons...

    Please take care and good luck.

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    • Posted

      Me again...

      Although I do always feel like someone's about to pull the plug on my energy levels....if that makes sence,so at some point il probably just go bang and stop in my tracks....il then follow through with other treatment/options.

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  • Posted

    Hi Mary,

    It was only recently that I found out that low mood and depression can be Linked to and caused by hypothyroidism. I was very depressed when I was diagnosed and find that when they reduce my meds I felt so down. When I started to adjust to the dose my mood started to lift. I dont think that's a coincidence

    I have the same problems trying to explain to my family and the only response I get is to "think positive and stop focusing on the negatives". I do wonder how they would react if they were in our shoes. It's hard for people to understand and that is such a struggle. I guess one way to describe is that thyroxine is a hormone and things that are hormone related can affect your mood quite drastically.

    When talking about the tiredness I say it's nothing like feeling "just tired". It's more like coming round from a general anaesthetic. It's constant dizziness and exhaustion for me.

    The first thing my doctor said to me when I was diagnosed with chronic fatigue syndrome is "don't expect people to understand". Which I thought was an odd thing to say, but people don't understand these types of illnesses as nothing else really compares to it.

    Stay strong and remember that we are all doing the best we can and it's tough going through this but you will get there in the end. X

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    • Posted

      You've hit the nail on the head...

      That's just how I describe the feeling,like comming round from anaesthetic and recovering from major surgery....and no body does understand....

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  • Posted

    I also forgot to mention, levothyroxine doesn't work for everyone and there are other options (which they don't tend to mention).

    Liothyonine is another synthetic medication. This is t3 which is the usable hormone in the body

    Levothyroxine is t4, which is then converted to t3. Some people feel more awake with t3 but it can be hard on the heart for some people (heart palpitations etc).

    NDT is another med but consists of natural hormones rather than. Synthetic. This is not available on the nhs in the UK but is available privately. Lots of people say this is great in comparison to levothyroxine.

    Levothyroxine is a generic and cheap drug which is the main reason it is used. Some people do fine on it and it can take a while to adjust to the right dose, but it's not for everyone

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