Is this it now?

Just had a really upsetting appointment with my GP, I will put you all in the picture and then any advice would be greatly appreciated.

Diagnosed just over 3 years ago with an underactive thyroid, and had the misfortune to be under a very apathtic GP who put me on 50 mgs Levo and that was it...No bloods, no nothing I kept going back as I was becoming more unwell. I then found this site and started reading up on the illness, I then tried NDT for a while and started to improve, then hit a brick wall after a few months. Finally after much foot stamping I got to see an Endo, who prescribed T3 but that did not appear to work. In this time I have had to give up work and just exist day to day...Soooooooooo Dec last year with my new GP, in fact my 5th GP! I decided to go back on Levo and was being properly monitored, started on 50mgs and am now on 200mgs. After each increase I would feel nothing for a week or so and then I would have a few days of feeling more perky, my moods were much brighter and had energy to do things and go out and then that little opening closed up again and back to my now normal default setting. Have had all the usual bloods done, and folates and ferritins ok, B12 a little low but am boosting with high strength vits,Vit D was low but have been on really high dose of D Vit from GP. Current state of play with thyroid bloods are:

Free T3= 4.4

TSH = 0.5

Free T4= 20

Not too sure where my T3 should be level wise? I also had loads of other tests done and my Serum Anti-TPO antibodies are 809U/ml, the way the GP explained it I now have auto-immune thyroid, and due to the body attacking itself she is saying that I have Fibromyalgia! That did not go down well with me and with the advice to try and get out even if its only a 5 min walk to the shops. So is that it thats my life now, oh and I was offered anti depressants as she is concerned about my mental health. So from having a full,interesting, exciting life to this for the next 30/40 years. How can that be? Are there really no options left? I have just started mixing in some T3 20mgs and reduced my T4 to 100mgs, hoping it will give me a little boost but nothing so far. I live on my own and have no support in this area as I moved here just when I started becoming unwell. Any suggestions, anyone going through similar? The good thing with my GP is she is open to suggestions so if there are any other tests or consultants I could see that also would be helpful. I hope this makes sense as I am not happy bunny at the moment and am on auto pilot as I feel quite numb!

36 Replies

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  • Have you ever considered your gut to be the problem. when you have an auto immune illness it does not just attack the thyroid, it can, and does, attack other part of the body and one of the main areas is the gut.

    Have a look at this questions posted today regarding wheat/gluten and take special care to read the links. You never know it might be your answer.

    thyroiduk.healthunlocked.co...

    Moggie x

  • Hi Moggie,

    I have often thought about the gut as I have seen it mentioned on here, and was going to try the GI diet as a starting point, and I quickly checked out that article and have also been told I have the signs of a 'fatty liver' and have to go have a scan. I will do anything at this point to just feeling even just alittle bit better.

    Thanks D x

  • Then maybe your first step is giving up bread. Don't jump head first in to it as it can be complicated so give up one thing at a time. After bread you can try giving up all wheat products - which is a bit harder as they put wheat is an awful lot of things. Then you could try gluten.

    My endo was pleased, but very surprised, that I had gone down this road to try and help myself. I have lapsed lately and am now paying the price - I feel very tired, bloated and constipated again.

    Read all Naamisue's blogs (although some of the things she has done are a bit drastic but they have worked for her) and make up your mind from there.

    Moggie x

  • OOooooooh the dreaded bread....And of course like most I love my bit of toast in the morning! I thought breads like Spelt could be used, or soda bread,or maybe thats just my wishful thinking! I will look into it and tread carefully. I will reread the posts again, I know diet and what you eat is all powerful, its just so hard as there such little joy as there is, but maybe its the price we have to pay to regain good health.

    D x

  • I feel the same - I absolutely LOVE toast and have found this the hardest thing to stop (hence the relapse lately) but when I was moaning to Naamisue last night on the phone bout feeling tired etc she said that it is hard work to give up things that you like, its just a case of how ill you feel and how much you want to get better. After that kick up the backside I haven't had any toast today.lol.

    Moggie x

  • He he hope you manage to stay off it. Are there really no alternatives? But like you say there is a bigger picture going on here...Toast or good health? I know what I would choose! D x

  • Do you have sprouted grain bread in the UK? It is a high protein bread, gluten free and when toasted it is half way decent. Check a health food store if you can't find it in the freezer section.

  • Hi there, I will check it out luckily I do have a good health food shop near ish by. I have found some gluten and wheatfree breads in a supermarket as well, but the price is 3 times a normal loaf, but should last a week so might also be worth ago. Thanks D x

  • Hi miss dove

    My husband has had a scan they say he has fatty liver, and he is to cut out saturated fats. Could be genetic condition apparently.

  • Hi there,

    Yes I think it could be as my Mum has just recently been diagnosed with the condition, and I appear to follow her illness wise!

  • Just briefy misdove, as we are in a hurry to get well and get a glimpse of feeling better think we are on the home straight!

    From what I read on here the Vit D & B12 folate have to be optimum to get the full benefit from thyroid hormone.

    A year on thyroxine only and six months taking above vitamins and others, I now have improved hair skin pain. Was told by enlightened new GP that it could take 18 months. Despite that (as I lead a very limited life and have to rest day before activity and sometimes two to three after) I asked for T3. He referred me to Endo. who made it clear 'they' in their experience found people did not do well on it. (I dont entirely believe it) .

    He said I was concentrating too much on thyroid and there were other hormones involved!!

    He ordered a raft of blood tests including short synacthen test.

    Am waiting for all of results to come together, have some which look fine.

    Just wondered could you just hang on until the Vit D & B12 levels are good to judge how the thyroid hormone is for you.

    How long did you give T3?

    I have sent you a p.m. hope this is OK

    wyn

  • Hi Wyn,

    I know the first time around with T3 I did not give it long enough, and I am trying to get my vit levels to optimum, I will ask GP to check them again. And yes you are right we are in a hurry to get better, I like you have to rest a day before doing something and then rest up at least 2 days after doing something. A gentle stroll along the prom a few weeks ago wiped me out for days. I hope that you start feeling better soon and get to that better place that we all want so much.

    Thanks D x

  • Do you have the range for your fT3 please? xx

  • Hi Clarebear, all it says on the print out is please note that the reference ranges changed in 2011 and they have changed the method to Roche? I will have to call my surgery tomorrow to get the ranges, I know they are on previous blood results, do you think its worth digging them out?

    D x

  • Hi again Clarebear, have just found some tests from Nov 2012 and would guess that these are the ranges being used for the FT3= 2.8-7.1 if that helps?

    D x

  • I think your fT3 looks rather low in that case - were these results before you added in the T3? Personally I feel better with my fT3 close to the top of the range, and I think this is often the case. Just wondering if you could add in a bit more T3? xxx

  • Hi Clarebear,

    I probably will add more, the results are a week into me starting to use the T3. The only thing is I am not sure how long you are meant to give the T3 before you increase again? D x

  • Sorry not sure of the answer to that :D With NDT I believe it is about 3 weeks, although sooner if symptoms come back... xx

  • Wnen you started on your NDT did you have a plan as how it was to be taken, i.e. small amounts to begin with gradually building up depending on how you felt.

  • Hi Jan, yes I researched it and built up very slowly over a period of months starting on a half grain and increasing every 6 weeks or so, by half a grain each time. D

  • Seems you were doing the right thing. The more research I do the more confused I seem to get but I think its worth ploughing on. I have recently been reading the website of Paul Robinson who wrote 'Recovering with T3' - you might have been there already but it has some interesting points. I haven't read his book but may consider giving it a go.

  • Yes I must admit I agree with you, I think I have this illness sussed and am armed with knowledge, trying this and that and then it all goes pear shaped and you feel like you know nothing about this illness, complex does not even cover it! I had heart problems afew years ago and had to have surgery and at the time thought it was traumatic, but that was easy peasy compared to this insidious illness. Have been looking at Pauls website and and its something that I am considering trying. Keep on keeping on is all we can do!

  • Just wondering what dose you got up to and whether you have any blood test results from then?

    It has taken me nearly 18 months to get my NDT up to 3 grains, and often I felt worse rather than better, but it has been worth it as I am feeling so much better now.

    Clare xx

  • Hi again Clarebear, I got up to 3 grains and then just seemed to hit a brick wall, so I tried a further increase, but that was not good so I decreased for a while and then I gave up as I was feeling so unwell and did not know what to do next...I am so glad that you are feeling better and I know at times you can feel worse but its knowing when to continue or that its really not working. D x

  • Yes you are so right - very difficult to know whehter to increase/decrease/stop all toghether. Hope your current regime with a bit of tweaking, sorts you out too :) xx

  • Thank you :-) x

  • Sorry, can you explain what NDT is? My GP has only ever dished out levo- and I'm feeling like I need to arm myself with far more knowledge.

  • Natural dessicated thyroid. Basically dried and tabletted pig thyroid, which seems to work better than synthetic T4/levo

  • Just to say that I understand how hard it can be living on your own with illness particularly in a new area. Friends and family just don't understand that the NHS can leave people untreated.

    I moved to a completely new area just under 2 years ago and have not settled at all, partly due to being a bit of a loner.

    Is there any activity that you can do that makes things more bearable? It's important to believe that you won't always feel the way you do now. Life will get better and you're doing really well by researching and trying different things.

  • Thanks for your kind words. Everything pretty much wipes me out and there is no consistency any more, plans are hard to stick to, I just tend to let people down nowadays.Long term friends have gone, and new ones you have to be out there to make them, I was always at the hub of things and this is so difficult to come to terms with. But like you say hopefully life will get better and we all keep on trying the best we can, as surely this cannot be it? I am sorry that you have not settled also, it really does make things tough. I wish you well also in getting to a better place... D x

  • Hi Missdove, Have you tried the 24hr urine test to see that you are actually absorbing your meds? Someone on this site told me the bloods do not tell the whole picture and you can actually be absorbing very little thyroid meds. More money though, lol!

    I have to admit I feel the same as you. I've just recently found out that my adrenal function is low, so this doeasn't help at all.

  • Hi there Helcaster, I had the 24 urine done last year via the NHS and there did not appear to be a problem, but its something I have considered. I do feel there is a adrenal issue here and like you said it does not help matters. Also it does not help that most Endo's and G.P's have even less knowledge on adrenals than they do the thyroid, so makes our battles even harder.:-(

  • Hi missdove, That's interesting you've already had this test. It's something I'm considering having. But will the GP take notice?? I'm pretty much going my own way re thyroid, BUT what effrct is the low cortisol having. I'm seeing my GP Wednesday but not expecting any answers.

  • I know what you mean, I just feel that I am going around in constant circles, but the more I research and hear I feel the adrenals are an underlying problem, well I am hoping as I have run out of ideas after that...

  • Hi missdove, you may have seen my post. My gp suprisingly did take my low cortisol seriously and has sent the lab report to the endo I've been waiting months to see. Hopefully you may get lucky too :-) .

  • Oh that's good news, lets hope from this you can get things sorted out. And am trying to be ever hopeful of getting lucky...Best wishes D x

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