Hypothyroidism

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Does anyone else really struggle with all the symptions of Hypothyrodism, i just find it extremely hard to manage everything, the doctors really dont seem to have a clue when you ask them anything, i feel dreadful all the time and everything is an effort.  I am on 125mg of throxine, my ferritin levels drop constantly so have to be on iron tablets as well.  I was on 150mg but they decided i was slightly over medicating so dropped my dosage, but i feel worse.  I have put two stone on in the six years since i was diagnosed and cant lose anything even though i watch what i eat and exercise, but no one seems to be able to give me any help.  There are so many things that make you feel awful and i just dont think people realise how hard it is to manage.  I have gone from a person who never sat still to someone who has to sleep after any activity and finds anything an effort to carry out.  Any suggestions greatly appreciated.

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  • Posted

    Hello Fiona:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's thyroid disease since 1987. I am 55 now but had symptoms start at age 12 and were not diagnosed back then.

    Thyroid disease can be misdiagnosed as symptoms can often be explained as stress or depression or another disease or missed entirely by a doctor.

    It sure is a challenge and I struggled from 1987 to 2009 trying a number of different thyroid meds. I was on Levo, then Liotrix, then Armour thyroid and the one that worked on me Liothyronine or Cytomel.

    The problem is each of us needs a different dose and in some of us the medication stops working well enough .  We all tend to be low in Ferritin and even I take Iron supplements.  It is a real struggle and I agree with you -it is a full time job just staying above water!  Also many of us are low in Vit D and B-12 and that is also common in Hypo patients.  You may be low in that so get blood tested for this also.

    If you are in the UK ask your doctor if you can try a small dose of liothyronine  5mcg which is just T3 hormone and it helps you feel better.  That is what I am on and I came alive when I started it back in 2009.  Many people on Levo need a bit more T3 since Levo is T4 and has to convert into T3.  T3 is what gives you energy and is very helpful to losing weight also.

    Do ask for it and explain the fatigue and weight problem to your doctor.

    Any questions, just ask,

    Regards,

    Shelly

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    • Posted

      Hi Shelly,

      Thank you so much for your reply, it does help.  Yes i am in the UK, my doctor has never mentioned any other form of medication, but i have read an awful lot about T3 and how it helps people, just not sure it is something the UK will issue but like you say it is worth asking, anything would be a help to be honest.  I shall also ask about the Vit D and B-12, can you not take supplements yourself or do they have to be prescribed.

      Unfortunately our doctors do not seem to be very knowledgable about everything so you are just put on medication and have to struggle on.

      Thank you so much for your reply

      Fiona

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    • Posted

      Hello  Fiona:

      NHS does have Liothyronine T3 I am told by several ladies on this forum.  So try asking for it.  Some of the ladies buy outside of NHS the Natural Dessicated Thyroid tablets.

      Vit D  is availabe where ever they sell vitamins and B-12 also can maybe be found at a good shop.  They used to do B-12 injections but they now have a form in a tablet and a pharmacist can show you where it is in the store.

      Also T4  LEVO is a med that must convert into T3 and that can be a problem  for some of us.

      Keep me updated on how you do.

      Shelly

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    • Posted

      Hi Shelly,

      Thank you again for all that information it is so helpful to speak to someone who understands how we feel.  I am due back at the doctors in a couple of months for a review so i will mention the T3 medication, its worth trying isnt it.  I dont really feel i have ever been able to get everything under control to be honest and would love to just feel normal again.

      Will go to the pharmacist and find out about the Vit D and B-12.

      Its so interesting to read everyone elses thoughts on things as it makes you feel better when you realise you are not on your own.

      Thank you again, take care.

      Fiona

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    • Posted

      Hi Fiona,I'm also from UK (Milton Keynes),Iv'e been back to my doctor this week regarding testing my T3,the reply was that the lab didn't test for it,i'm also pushing to get him to send me to an endo,now he seems to think i need a scan on my neck first or they wouldn't see me,I told him i feel swollen and tender round the front and back of my neck,his comment to me was that you don't get pain with hypothyroidism,you just take a table and in 6/8 weeks you'll be fine.REALLY,Oh well i have to keep pushing for help,it's great to see some of the comments on this forum i don't feel so alone.x
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  • Posted

    Me too!

    Just the same as you Fiona,it's a living nite mare.

    I've just returned from a stag doo in las vegas and after the 1st night it all went down hill for me I had no energy and felt shaky and funny for the rest of the 3 nights.

    I was embarrassed cause with me been with 5 other guys they just wouldn't understand what I was going through.

    I'm on 100mg of thyroxine I've tried taking it on a nighttime and in the morning.

    It's fairly rare for a guy my age to get this problem inherited from my mother.(blame her)

    It's great to be able to talk to other people as I feel a bit desperate realy.

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  • Posted

    My problem started last year and I'm still struggling. My dr tells me he only knows about levothyroxin. I've seen the endocrinologist once (next appt is tomorrow!) and I felt brushed off, told yes my symptoms are typical hypo, but my TPO or T3 isn't checked, neither is vits levels....Feeling very frustrated and am still on sick leave from work. Unable to deal with everyday things, even my small kids. The meds side effects are the icing on the cake. And I feel like I'm paranoid and not heard.

    You are certainly not alone.

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