Myfitnesspal

Message Boards Groups Hypothyroidism and Hyperthyroidism
You are currently viewing the message boards in:

newly diagnosed

ruqayyahsmumruqayyahsmum Member Posts: 1,490 Member Member Posts: 1,490 Member
bit of background. i was diagnosed this week with hypothyroidism after 9 months of steady decline in my health.

ive been started on levothyroxine but to be honest im feeling worse than ever. im sleeping 16 hours if im not woken, still falling asleep several times a day and mentally im very foggy

is this normal with this medication and does it get better?

i also take menafemic acid, co codamol, extra codiene and naproxen for arthritis and vitamin d for vit d deficiency thou i take them seperatly from the levothyroxine

Replies

  • SanteMulberrySanteMulberry Member Posts: 3,311 Member Member Posts: 3,311 Member
    Two things: I hope the pharmacist told you to take your levothyroxine first thing in the a.m. on an empty stomach? Also, you should wait at least a half hour to eat after you take your levothyroxine.

    The second thing--I hope your doc told you that thyroxine is "long-acting" . If you just started it, you could wait 2 to 6 weeks before seeing much change.
  • ruqayyahsmumruqayyahsmum Member Posts: 1,490 Member Member Posts: 1,490 Member
    the pharmasist and my gp told me nothing

    i have been taking it when i get up which today was acctually lunch time

    ill give it a few more weeks before i speak to the gp again, thank you
  • islandmonkeyislandmonkey Member Posts: 546 Member Member Posts: 546 Member
    Wow, that's very negligent that they didn't discuss how to take it! You want to take it on an empty stomach - first thing when you want up then wait 30-60 mins before eating, or at night (3 hours after eating). You also want to take any other pills or supplements at least 4 hours after your thyroid meds, especially calcium or iron (as these can bind to the hormone).

    Are they testing your free T3 and free T4, or just your TSH?

    You're on a T4-only med, and if your body has difficulty converting T4 into T3 then it's not going to help. If you don't feel better in 4-5 weeks I'd consider asking to be put on a natural dessicated med like Nature Thyroid or Armour, as these contain both T3 and T4.

    Please ask them to test your free T3 and free T4 at your next set of labs. You want your free T3 to be at least above mid-range or you will still feel hypo.

    Vit D: how low is it? You want it optimally in the 60-80 range and not just 30+. Vit D is critical for T3 to be able to act on your cells. My last Vit D level was at 41, and I take 4000 IUI daily to bring it up.
  • ruqayyahsmumruqayyahsmum Member Posts: 1,490 Member Member Posts: 1,490 Member
    my last vit d level was 21 which my doctor said was low end of normal lol

    my vit d tablet is 400 iu (10ug)

    im not sure what there testing. my gp had told me my thyroid function was normal, my bone doc wrote to me and gp to flag up my levels. gp then played watch and see with my numbers climbing higher with every test done. they then did antibody levels which im told are sky high

    i think i need to book in to see her again and ask more questions, i have to go in soon anyway as she thinks im anemic but the lab lost the blood they were meant to be testing so had to give a another sample last friday
  • islandmonkeyislandmonkey Member Posts: 546 Member Member Posts: 546 Member
    my last vit d level was 21 which my doctor said was low end of normal lol

    my vit d tablet is 400 iu (10ug)

    Ok, WOW - if that doctor won't take those levels seriously you need to find someone who will. I know a lot of people who have been on 10,000 IUI daily with levels that low (under doctor supervision).

    im not sure what there testing. my gp had told me my thyroid function was normal, my bone doc wrote to me and gp to flag up my levels. gp then played watch and see with my numbers climbing higher with every test done. they then did antibody levels which im told are sky high

    i think i need to book in to see her again and ask more questions, i have to go in soon anyway as she thinks im anemic but the lab lost the blood they were meant to be testing so had to give a another sample last friday

    Yikes, I'm really thinking you need a new doctor. If they said your levels are "rising" that means they are only testing TSH (which is a pituitary hormone that goes up as your thyroid hormones go down). You need to have your free T3 and free T4 tested.

    If they're only testing TSH you want to make sure they keep it down to at least 2.0 -- many doctors are still using the old range where 4.0 is "normal", but I"m sure you want to feel GREAT and not just normal/fine/ok.
  • ruqayyahsmumruqayyahsmum Member Posts: 1,490 Member Member Posts: 1,490 Member
    down to 2?

    my doctor was still wanting to play wait and see at 5.9 ( bone doc flagged it at 4.8 )
  • islandmonkeyislandmonkey Member Posts: 546 Member Member Posts: 546 Member
    down to 2?

    my doctor was still wanting to play wait and see at 5.9 ( bone doc flagged it at 4.8 )

    TSH is a pituitary hormone that moves in the opposite direction as your thyroid hormones, so a high TSH = hypothyroid. There's a lot of controversy over the top of the range for TSH, but the old upper limit of 5.0 has long been suggested as WAY too high (i.e. very hypothyroid). In 2002 the professional recommendation was 3.0 as the upper limit, but many educated professionals argue for 2.5 or even 2.0. I would feel like crap and be barely able to function if my TSH was much over 1.0.

    Some doctors prefer to "wait and see" if you'll get full blown hypothyroid, so they'll let your TSH get as high as 10. Personally, I would never see a doctor like that. I would want treatment asap with a TSH of 5.9!! How are you feeling...?

    That high TSH, combined with "sky high" antibodies that you mentioned, tells me you already have full blown Hashimoto's -- autoimmune thyroid disease. Please consider at least finding a second opinion....!!!
  • fiberartist219fiberartist219 Member Posts: 1,942 Member Member Posts: 1,942 Member
    I'm glad you got diagnosed and started treatment. I just hope your doctor is being aggressive enough.
  • ruqayyahsmumruqayyahsmum Member Posts: 1,490 Member Member Posts: 1,490 Member
    how am i feeling?

    god damn awful. im constantly tired. im falling asleep mid conversation several times a day.
    my heatings set to 30 degrees celcius and im still wrapped in a blanket with the fire places roaring,
    i took 2 levothyroxine at some point in the last few days but i cant recall when, i must have mistaken it for my codine
    ive had to bring my walking stick into the house because my legs given up and im having to use my assist stool in the shower to prevent me crumpling to the floor
    i alternate between tearful and irritated by silly things including my disabled daughters inability to put her shoes on ( she only manages to put them on unaided maybe once a week ) and im breathless again

    ive just rung the doctor for my fbc results, she had told me either they would be normal so no action or she would have to prescribe iron and would leave a prescription with the receptionist for me to collect. insted theyve told me to go in tomorrow morning
  • ruqayyahsmumruqayyahsmum Member Posts: 1,490 Member Member Posts: 1,490 Member
    Well I booked in to see the doctor yesterday but when I got there they insisted the senior doctor wanted to see me instead. I found her abrupt and rude. She told me I'm not anemic but my blood levels and my irons too low. So I've to take ferrous sulphate tablets 3 times a day. I was then dismissed from her office before I could get a word in edge wsys. I think I might have to change practice
  • dkschraderdkschrader Member Posts: 32 Member Member Posts: 32 Member
    Wow,,, you poor thing.... you really need to find a different doc.. They have put you thru enough misery! I have had to go to 3 different ones before I found the perfect fit in doctors. I also travel 1 hour to see him. so please don't let distance keep you from finding the perfect doc for you. ONe that will actually listen to you and treat your symptoms.
    You can also keep your own records of all your test results, ask for a copy, just so you can compare yourself from one time to another.

    on the Vit D, I take 5000 units a day to keep my levels up.
    Personally I dont' like the "wait and see" game, when it is your health (mental and physical) they are "playing" with.
    just my 2 cents!
  • islandmonkeyislandmonkey Member Posts: 546 Member Member Posts: 546 Member
    how am i feeling?

    god damn awful. im constantly tired. im falling asleep mid conversation several times a day.
    my heatings set to 30 degrees celcius and im still wrapped in a blanket with the fire places roaring,
    i took 2 levothyroxine at some point in the last few days but i cant recall when, i must have mistaken it for my codine
    ive had to bring my walking stick into the house because my legs given up and im having to use my assist stool in the shower to prevent me crumpling to the floor
    i alternate between tearful and irritated by silly things including my disabled daughters inability to put her shoes on ( she only manages to put them on unaided maybe once a week ) and im breathless again

    ive just rung the doctor for my fbc results, she had told me either they would be normal so no action or she would have to prescribe iron and would leave a prescription with the receptionist for me to collect. insted theyve told me to go in tomorrow morning


    I REALLY think you need a new doctor, one who will treat you properly. You should be on thyroid meds NOW with a TSH that high and with all your symptoms!

    Your current doctor is clearly waiting for you to get worse before he/she will treat you. Which is INSANE. Please, please find a new doctor who will properly treat you and give you thyroid meds!!
  • islandmonkeyislandmonkey Member Posts: 546 Member Member Posts: 546 Member
    Wow,,, you poor thing.... you really need to find a different doc.. They have put you thru enough misery! I have had to go to 3 different ones before I found the perfect fit in doctors. I also travel 1 hour to see him. so please don't let distance keep you from finding the perfect doc for you. ONe that will actually listen to you and treat your symptoms.
    You can also keep your own records of all your test results, ask for a copy, just so you can compare yourself from one time to another.

    on the Vit D, I take 5000 units a day to keep my levels up.
    Personally I dont' like the "wait and see" game, when it is your health (mental and physical) they are "playing" with.
    just my 2 cents!


    ^^^^ All of this. I'm about to fly 2 hours away to see my old doctor, to properly have my thyroid levels treated.
  • jbbrannonjbbrannon Member Posts: 167 Member Member Posts: 167 Member
    Is your doctor an endocrinologist?
  • ruqayyahsmumruqayyahsmum Member Posts: 1,490 Member Member Posts: 1,490 Member
    im going to look round for a new gp but in england things are slightly different. you have to live in the area your gp's in, my last gp took me off thier books when i moved 15 miles away to the other side of my city

    the doctors not an endocrinologist, i cant see one unless my gp reffers me to the hospital, will ask if they will allow me to be refferred to one

    i did see an endo years ago for my insulin resitance ( i have pcos ) but they discharged me with instructions that i should be on metformin unless pregnant but the gp (not the gp i have now) had that overturned by another endo when mine retired and i was discharged from thier service
  • ruqayyahsmumruqayyahsmum Member Posts: 1,490 Member Member Posts: 1,490 Member
    i have managed to get my hands on stronger vitamin d tablets thou, local health store had 1000 iui, its worth me paying for that as mine are only 400 iui
  • shvitsshvits Member Posts: 249 Member Member Posts: 249 Member
    I agree with everyone, get a 2nd opinion. My doc (I fired one before her) started my in synthroid (brand not generic) and when I was stable reduced the dose and added cytomel (for T3). I take cytomel twice a day and no longer take 2 hour naps! She is an endocrinologist. GP's NEVER know how to deal with thyroid issues, even though they insist they can do it. (I let one try for about a week once before I insisted in a referral to an endocrinologist). I have been through 4 endocrinologists and now have one that is very skilled. Good luck.
Sign In or Register to comment.