Have been dealing with crippling hypo since January!

Had thyroidectomy in dec '12. Have been hypo ever since! Finally got labs in range 2 weeks ago on 100 mcg thyroxine. Still very bad symptoms such as dizziness, cold,pins and needles,weakness,sore and weak muscles, out of control emotions. Relying totally on family for everything at the moment. Labs as follows: TSH 2.1(.5-4.5), t4 18(10-20),t3 4.4(3.5-6). Have put dose up to 110mcg (2 weeks ago) and no relief yet. Do I just need to give this more time now that I have just got back in range after so long of being hypo? How long have people waited to see symptoms improve once they hit the right dose. So interested to hear some experiences. I am one desperate Aussie at the moment!

15 Replies

  • If you are left hypo for a long time then yes your body will take longer to recover but can I ask some of the basic questions like:

    At what time do you take your thyroid meds

    Do you keep all food/drink (except water)/supplements/other meds well away from the time you take your thyroid meds.

    Have you had B12, VitD, Iron, ferritin and folates checked.

    Your TSH is to high at 2.1 - people on here find that they don't start to feel any better until their TSH is under one so you have a little way to go yet.

    Moggie x

  • My reply is below Moggie- new here so have just worked it all out. Brain fog does not help !

  • Hi Moggie, I take meds around 6 am and breakfast around 8 am.take vitamins at least 3 or 4 hours away from thyroxine. Have been tested for all other things you mentioned plus everything else under the sun! Endo is very good like that but seems to think a tsh of 2 is ok!! When I was we'll I always had tsh under 1. Is that an indication of where I should be aiming? Will my increase of 10 micrograms get me close do you think?

  • More like a 25mcg increase. My endo had me under medicated not so long ago with a TSH or 2.6 and an extra 25mcg's has made all the difference to me. I also had low ferritin levels and have been taking iron for the last 3 months, which has made a huge difference.

    Have you got any results that you can post on here. If your endo thinks a TSH of over two is o.k. then he could be thinking a low range of ferritin or B12 is o.k. Levels the GP's/endo's deem as o.k. are totally different to what thyroid sufferers actually find are o.k.

    Are you actually in Oz or are you in GB.

    Moggie x

  • If your TSH was below 1 when you were well then you definitely need to be aiming below 1 now you are on thyroxine. Each of us has our own very narrow range of "normal" and that is what you need to be aiming for.

    Recent research suggests that, in hypothyroid patients, TSH doesn't respond to thyroid hormone levels in the way it should so you may even need to get your TSH lower than it used to be.

    I agree with Moggie that you are likely to need an increase of more like 25mcg than 10mcg.

    I hope the increase helps :)

    Carolyn x

  • Thanks Carolyn. I guess I am at least getting closer to getting my life back on track. Endo wants me to stabilise on 110 now for three months, but think I should check levels in 4-6 weeks and see where I am and increase again if needed. What do you think? My gp is very good too so will work with her as well.

  • 4-6 weeks is ideal. It can take this long for each increase to have it's full effect. Your GP sounds good so I'm sure she won't mind being educated about this stuff. After all, GPs need to know a little about everything so they don't have the time to learn in depth about everything when they train. I'm sure she'll be glad of the knowledge. Good GPs usually are :)

  • p.s. Do your multi vitamins contain iron or calcium at all? If they do they should be kept at least four hours apart from thyroid meds.

    Moggie x

  • I am actually in the land of Oz! My endo would have left you on 2.6 as well. Interestingly my surgeon, who suffers from hypo himself, suggested aiming for tsh of 1! People who suffer the disease clearly have a better idea of where things should be I think.

    Ferritin result 51ug/L (15-165)

    B12 in range, just can't find result at the moment though.

    Take calcium well away from thyroxine

    Have been sensitive to thyroxine increases so have gone fairly slowly hence the prolonged hypo!

    How long did it take for you to feel well Moggie, or are you still getting there too??

  • Your Ferritin level needs to be nearer 90, your B12 needs to be over 700 (that's if the Oz ranges are the same as the English ones - which they seem to be). Your vitD should be o.k with all the sunshine you get over there.lol. but don't take anything for granted.

    I have found, on my journey, that this is a very complicated illness and that my meds have had to be monitored/adjusted throughout my journey.

    I started off on Levo (T4) then went on to a T3/T4 combo but had to come off that due to heart issues (palps/skipping beats) so went back on T4 only. In the meantime I was diagnosed with low VitD - twice - (which is very common in hypo patients), my B12 wasn't good and now my iron is low so I am still tweaking/fine tuning. Unfortunately if your vitamins/minerals are not at an optimum level then your T4 doesn't work to its full potential so getting your B12 etc in better shape is almost as important as getting you thyroid meds right. As I said a very complicated illness that you will have to learn to monitor yourself and educate the health professionals that look after you (that's if its anything like England - which, going by your endo's theory if a TSH of 2.1 being o.k - it is)

    Keep copies of ALL your blood results to help with monitoring, do lots and lots of research, ask questions on sites like this one if you don't understand anything and don't be afraid to speak up for yourself or disagree with your endo if you feel his advise warrants it. I have found that the most important question you can ask when dealing with the medical profession is WHY. If you don't understand something ask why, if you disagree with something ask him/her to explain and don't stop asking until you do understand or agree with what they are telling you. The more the medics realise that you know your subject the more respect they tend to treat you with and the more they wont try and fob you off with silly statements like a TSH of 2.1 is fine.

    Hope this has been of use to you and I hope you don't think I have given you a lecture.lol.

    Moggie x

  • Moggie, I treasure your advice and don't see it as a lecture at all. So glad you have taken the time to help me out and help me realise that my thoughts on tsh were correct. Will give this increases a month and then up it a bit if needed with my gp. I am such a patient person but this has even put me over the edge. Thanks again Moggie xxx

  • Vit D deficiency is actually very common here as we all try to protect ourselves from the harsh sun! Just an interesting little fact for you xxx

  • There has been articles in our newspapers saying the same thing - factor 50 sun creams are causing VitD deficiencies. sometimes you just don't know what to do for the best do you.

    Glad I could help but hopefully others on here will also add their views (which will most probably be slightly different from mine) to give you a more balanced view. Don't forget to try and get your Ferritin (iron) levels to at least 90.

    All the best and please let us know how you are coping and keep asking questions on anything you don't understand - KNOWLEDGE is the key to understanding and managing this illness.

    What is your weather like there today - I am sitting at my desk (am at work) with grey skies overhead, occasional downpours of rain and quite chilly - and this is supposed to be one of our warmer months.lol.

    Moggie x

  • Well this is almost winter and we had a glorious sunny day with 23 degrees Celsius! Mum was in a t- shirt but I was still rugged up!!

  • We'll be lucky to see 23 degrees at the height of our summer.lol. Know what you mean though about staying rugged up.

    Moggie x

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