Thanks guys and gals for the warm welcome and the excellent advice

Thanks guys and gals for the warm welcome and the excellent advice. Ive tried some of the things you guys mention, ie: gluten free diet, soon after I was diagnosed I pretty much removed all gluten but didn't see much difference to be honest, I kept to the diet religiously for approx 6 months so gave it a good go but due to it not resolving the issue I have relaxed it a bit, for example when I'm at work I eat whatever is the healthiest option in the canteen at lunch which isn't always gluten free. I have eliminated soya though and make sure I dont go near it, I try to do a smoothy everyday with parsley, avocado, apple, banana and a couple of brazil nuts for the selenium content and I try to buy organic produce as much as possible.

Regarding my test results, it gets a bit complicated, I saw my GP a couple of days ago and yet again went through the whole explanation to him about my symptoms, now the strange thing is I know for a fact that my last test of TSH which was last year was 6.82, and the one the year before was also just above 6, they never gave me a print out but they showed me the results on their PC screen and I wrote it down. I clearly remember having what was really an argument with ther GP as he would not agree that a TSH of 6.82 was too high, their reference range at the time was 5. Now this is the strange bit, the other day when I saw the GP he said that all my results for the last two years were within range and showed me them on the PC screen, now all of a sudden they have results for all my previous tests with not only every TSH result as under 4 but also listing results for tests that they never gave me!. I noticed that their reference range has reduced to 4, my test for last year is now showing as having come back as 3.07!!! and the previous ones also under 4. Now this concerns me because either they have mixed up my results with someone elses, which doesn't actually make sense to me because the previous results were already on the system (I saw them for myself), or what I think is more likely they fiddled the results so they could cover their arses as their own test results showed that they weren't medicating me correctly as by their own reference ranges which even though was a TSH of 5 at that time I was over by 1.82. I even said to the GP the other day that the results they have stored are incorrect, I know 100% that I'm right on this so its quite frightening to know this sort of s**t goes on. I would like to think its an honest mistake on their part but it doeasn't seem likely to accidently mix up my results with someone elses and backdate 2 years of results, how on earth can that happen by accident? very convienient for them though as it makes them look like they were doing everything correctly. Anyway I have no way of proving this so they just get away with it and it means I have no ( real) test result print outs to put up on here, only the last two TSH results that I wrote down, the last one of 6.82 last year. I don't trust that surgery at all now and I think the recommendation one of you guys mentioned of changing surgeries is something I will have to try to do.

I had been tested for antibodies, or more accurately I should say I was told by a GP I had been tested for antibodies on my first test when I was diagnosed, and I was told that test came back ok, but anything that surgery comes out with I will take with a generous pinch of salt from now on. You know what, come to think of it I wouldn't be suprised if I was never

hypo in the first place after my experiences of the cock ups that surgery is capable of. I had and still have a shoulder injury/ problem which they cant seem to sort out either. I had a cortisone injection not long after being diagnosed with hypothyroidism which I'm sure didnt help with my symptoms. I raised my concerns about having the injection with the Orthapedic Consultant but he said it wouldnt be a problem, it complicates things as there are two things at approximately the same time that could cause side effects, the Levo and the cortisone, or both together. I have just been discharged from the Orthapedic Clinic because I raised my concerns about having another cortisone injection that they wanted to give me. I was explaining to the doctor why I have concerns about the cortisone injection ( it effecting the converstion of T4 to T3) but he weren't having it and thought i was undermining his proffesional opinion, this is the second time this one particular consultant discharged me for the same reason, even his assistant nurse agreed I may have a point. The stupid thing is that even he said the cortisone injection wouldn't solve the shoulder problem but it may help with diagnosis, so I get discharged even though I still have pain in the shoulder that nearly landed me in the dole queue. They have MRI scans of my shoulder which shows an impingement issue and an injury but I get discharged for having concerns about having a b***** cortisone injection that wont do anything other then help with diagnosing something that is already diagnosed, are they in the wrong here or am I losing

the plot. So to bring my situation up to date I have a blood test slip to test for TSH and T3 only, of course they will refuse to do the T3 test just like they had done on all previous occasions, funnny that isn't it, they refuse to do the T3 tests every time yet when it looks good for them to have done everyting properly I suddenly have full panel test results on my record that they never b***** well did. I tried to get the blood test done yesterday but they couldn't fit me in so I have to wait till next week, to be honest whats the point in going via these people anyway, can I really trust the results they provide me with, I dont think so. I will have to get tests done privately but will have to wait a month or so. I have just started a new job which is a promotion with good prospects and much better pay, this could be such a good point in my life if it weren't for this hypo crap and on top of it useless doctors that wont help you get better. I'm seriously worried whether I will be able to hold down this job with the symtoms I have at the moment. Its a long drive to and from work and then theres all the shopping, cleaning, cooking, etc etc to do when I get in so I dont stop all day and end up not getting enough sleep, at the weekends I feel so f**ked I haven't even the energy to go out and have a social life. Anyway, sorry for the long post, just really needed a b***** good rant. I have taken all your good advice on board and will try to go through all the recommendations as and when I can, cheers guys.

5 Replies

  • Hi, as I'm sure has already been mentioned to you, TSH of 6 is wayyyyyy too high. Supposed to be under 1 for most people when medicated to feel well. Dr Toft wrote a book which you can buy from your local chemist where he recommends this and he is someone whose opinion your GP should take on board (think he's something to do with the BTF?) so you could take a copy to your GP and show him.

    We can feel worse in the beginning of thyroid replacement when we are kept on too low a dose for too long. I didn't feel improved on levo until I was on 100mcg plus. 75mcg was the worst for me, absolute hell. An average replacement dose is supposed to be about 150mcg, but some people need much higher doses, assuming levo is going to work for you.

    When you go for your blood test, make sure you go as early in the morning as possible, like as soon as the lab opens. This is when TSH is at its highest, and seeing as your GP is so TSH focused you want yours to read as high as possible for them to do something about it.

    Can't believe what I'm reading about mixing up your results! Have they gone mad?! I have read lies in my notes by the practice manager so I wouldn't put anything under hand past them :-( If you ask the receptionist for a print out of all the blood results you've ever had done then hopefully she will print off the right ones and you can check your details at the top of the pages to check that she hasn't printed someone else's.

    Not sure about the cortisone injection... I think that's supposed to help conversion so would have assumed it would help with the thyroid problem in the short term but not sure... x

  • Thanks for the tip Diamond, I will make sure to get my next blood test done in the morning.

    If I ask the receptionist to do a print out of my test results I will just get a print out of the results they showed me on my last visit which definately weren't mine in the first place, the results (that I know weren't mine) were on my record as I saw the screen myself so it wasn't just a case of the GP just opening someone elses file and reading me the wrong results. What I expect to happen is that when my results come back high again they will then maybe up my dose claiming that the TSH level has just gone up since my last test last year, rather then them admitting that I was under-medicated for the last two years.

    Regarding the Cortisone, I too have heard conflicting opinions about this but have read a lot about how cortisone can adversely effect thyriod function, including it being a potential cause of becoming hypo. The reason I looked into this was because of immediately feeling unwell from the moment I had the injection which struck me as a little more then coincidence. I had been diagnosed being hypo before the cortisone injection so in my case it did not cause it but may well have made my symptoms worse. I've read a lot about how cortisone can put stress on the adrenal system and a lot of my symptoms at the time would go along with an issue relating to that. Also straight away after the injection I had additional pain in the joint which is normal but should go after a couple of days which it didn't and I am sure it weakened the area as after the injection I noticed a massive difference in strength of the joint which has never felt right since. As I mentioned it complicates finding the cause of the decline in my well being at the time because I had also started on Levo so its difficult to pin it on one or the other but I suspect its a combination of the two plus the original hypothyroid symptoms. Even the doctors don't reccomend more then 3 cortisone injections and thats in a healthy person so having one when you are hypo could be enough to throw your body further out of wack. Some possible side effects of a cortisone injection are weight gain and puffy face so you can imagine the problem trying to relate the symptoms with the cause when you have numerous things going on at the same time. Considering my dose of Levo has never been changed but I have lost some of the weight and puffiness I'm inclined to think it was either caused by starting Levo, or the Cortisone, or both together. I mean, I wasn't carrying any fat before my diagnosis, I just felt tired but this could have been due to being overworked and having had a lot of stress at the time. If anything right up untill I started Levo and had the Cortisone I could have eaten cream cakes non stop and not put on fat. The other symptoms relating to being hypo like brain fog, memory loss all occured following my diagnosis and the two medications. I'm wondering if I would have been better off not being diagnosed, unless of course the symptoms would have progressed to the same stages anyway and its just coincidental timing but who knows. It would be great if I had of had tests done in the preceeding years to see what the situation was then as that would tell me a lot but without that its all guess work.

  • I've got shoulder problems, and have had 4 cortisone injections over the space of a year or so, the consultant did say that the max of 3 was a recommendation rather than a set rule, but I was past caring at that point (too much pain). I had calcific tendonitis and a badly torn tendon; the last treatment was "needling" - the calcium is removed with needles under a local anaesthetic, and worked wonders for many months. It is all starting up again, unfortunately, and I certainly don't have the confidence to refuse treatment.

    I know I've read bits and pieces about there being a connection with shoulder problems and the thyroid, but every doctor I have mentioned it to reckons there isn't. I am assuming that as they will still have to treat the shoulder problem, so maybe it doesn't really matter what caused it, but it is still annoying.

    I sympathise with your "false reporting" - when I last saw my endocrinologist and was saying that I was worried about certain blood test results, she told me they were all fine. As I'd had a printout previously showing lots of deficiencies, I was surprised. My daughter pointed out to the endo that the patient info she was looking at on the screen were not mine! Duh!

  • Hi Beans, Sorry to hear you have shoulder problems too, it's a real bummer to be hypo and on top of it have a shoulder issue. Working out is the only true and proper way of combating hypothyroidism and it's like someone has said, here have this hypo s**t and we'll give you an injury to go along with it so you can't work towards feeling better, real pain in the rear!. Yeah there is evidence that the two conditions are related and no doubt getting the medication right must help with the injury because your body will be in a better position to deal with it and heal, afterall the thyroid produces hormones that help with cell regeneration and growth. Considering that all your bodies cells regenerate every few years its no wonder this condition leaves you feeling so run down, imagine that every part of you is replaced but not properly, after a few years your whole body could be a mismatch of not quite perfect parts, like a jigsaw with all the pieces not quite made to the correct tolerance, made in Taiwan syndrome lol.

    Yeah the doctors stipulate the 3 injection rule as a recommendation rather then a rule but considering they like to push their medications without reference to it's negative side effects it really should ring alrm bells when even they consider putting a limit on it, even if it is just a recommendation. Without all the really bad stuff that these injections can do to your body imagine how difficult it is to establish what dose of thyroid hormone you need to balance your body when you are having injections that will no doubt effect the system regulating the levels.

    Remember that corisone injections reduce inflamation and they don't really do anything else other then that, which may help with the healing process in a roundabout way. If you have a tendon which is swollen and catching on the surrounding joint it may be enough to give time for that tendon to heal without being agravated all the time by rubbing. The pain relief you feel is not from the injection itself but from the reduced swelling causing less pain, if after a few injections your condition does not heal it is likely the injection will not reverse the injury and some other treatment needs to be found. I think sometimes doctors just think f*** it, its the only thing that keeps the patient quiet for a while so we'll just keep injecting them, its a downhill spiral for sure (in my opinion), I would never advocate that someone refuses treatment and I'm not a doctor but my research into this has in my case decided that I certainly do not want any more cortisone, your situation may be different. My Orthapedic Consultant admitted to me that the injection will not help heal the injury but may only go towards further diagnosis, they have the MRI scans, can see what the issues are so why the hell would I want something that will not help but could in fact make the condition worse and effect the thyroid issues. A no brainer for me, but then I am going by MY experiences and how I felt following my injection, some people say it helped them so you could react differently.

    I would stress that in your case, or any case where you are having a build up of calcium deposits that you make sure to at least mobilise the joint as much as you can without causing further discomfort. If you have a build up of unwanted material between the joints you can wear away at it with exercise which will go some way towards keeping the faces that touch in the joint a little smoother. Again I will say that I do not know your exact condition but in most cases this would in fact be the case. If you can do some exercises with some weight then that will help with this effect and add strength to the area which also helps, even if just to provide additional support to the joint by the added muscle in the area. I have also heard of cases where it has helped to build some muscle in the right area, concentrating on a certain part of it which can add more tension on that side which may add relief as it would adjust very slightly the way the joint sits, this gets complicated to work out which way you should go with this and you would have to see a really good sports physio and hope they can work out what is best for you. I have found that if I do certain exercises I get a definate relief in the joint but because I have an additional problem with the tendon this then can play up, catch 22, exercise and the joint pain eleviates but the tendon can play up, don't exercise and the tendon is better but the joint plays up, it's bo***x isn't it. Anyway thought I would share some of my experiences with you incase you can find something of usefulness for you contained within. If it looks like it aint going to get better sometimes you just have to try some stuff yourself and see how you get on, if it dont work then at least you can say you tried everything.

    Also bare in mind that your adrenal glands produce cortisone naturally when you are stressed, and we all know what stress does. People bang on about adrenal issues with hypothyroidism, its a little risky in my opinion to take something that may have a detrimental effect on the adrenal system when it already may be under some stress.

  • Thanks for your reply, there is a lot of very useful info. I was in a Catch 22 situation too - I did have some exercises from a physio, but the exercises had to be very limited because they were worried that my partial tendon tear would end up being a full tear. I was encouraged to do gentle movement, mainly to prevent the shoulder seizing up again.

    The "needling" totally sorted out the problem before, but my orthopaedic consultant did say that there was a possibility it could happen again. When I see him again (yet another long NHS waiting list), I will discuss my options, and I know that I definitely don't want any more cortisone. He has always been someone that I can have a sensible conversation with, I don't think he would push to do anything I am not 100% happy with. It's a shame he didn't pursue endocrinology really!

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