Hi All, new member here saying hello

Hi all, Uk male here diagnosed as Hypo approx 2 years ago. Thought I would join to chat and have a moan to people who actually understand how these symptoms can effect day to day stuff as it appears that only fellow sufferers have the ability to do so. Doctors are s**t, treatment in Uk is s**t , and feeling constantly tired along with all the other symptoms is, well much the same s**t.

Felt a little off a couple of years ago- was diagnosed being hypo with TSH of approx 16, started on 50 mg Levo- straight away felt even more crap then before taking Levo. Accidental brand change of medication yeilded slight improvement to allergy symptoms so kept to Mercury Pharma brand, appears theres no other brand options to try. Typical story of GP only going by TSH tests, my last test was last year at 6.82, have had arguments with numerous GP's as I never get to see the same one at my surgery and they have all been useless-

Condition has effected my work almost costing me my job and I'm not out of the woods yet on that score. I'm struggling at the moment with tiredness, aches and pains and probably the most annoying at the moment which is sore eyes as I work in front of a computer all day, I can work at a PC from home without too many problems but go into the office and its a different story, maybe the air conditioning, or maybe just the fact that I'm concentrating harder and possibly had less sleep. Anyway not great, sometimes wonder if I will be able to keep my job if I don't at some point get some adequate treatment to get my levels right. Could go on for ages but you get the idea, from what I read most of you guys and gals have experienced pretty much the same stuff so at least I don't think I will be treated like a hypochondriac on here, I have enough of the hypo labels without any additional ones lol.

Would be interesting to hear from some of you guys what its been like for you and what advice you may have. I've read a lot on the web but its mostly from a womens perspective, As a guy I struggle with what feels like losing a part of my male identity, feeling tired, weak, not being able to be as active as I was, sports etc, confidence goes etc etc. To add to the problem I have a tendon/ joint injury which probably isn't healing due to the condition and stops me from working out which would probably be the only way of improving my fitness and confidence, not to mention getting rid of this beer belly that suddenly developed. I used to work out and have great stamina so this has effected me big time.

So guys, is there a light at the end of the tunnel or is this as good as it gets?. It's been 2 years and Ive got no-where, not one adjustment of meds, just given a prescription and left to get on with it and no amount of my complaining that I dont feel right is taken seriously, words cannot describe what I could do to them doctors, they should all have their thyroid glands ripped out then maybe they would learn something about the condition.

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  • Welcome to our forum,

    It's true there are more women than men on our site. It's just unfortunate that females are more apt than males to develop a thyoid gland problem.

    As you realise by now, it is a struggle to recover our health mainly due to the guidelines laid down by the BTA and RCoP (Royal College of Physicians). Many GP's seem to only take account of the

    TSH and don't seem to realise that the complaints we make are mainly due to clinical symptoms. If our TSH is 'within normal range' they believe further complaints are not due to the thyroid gland but 'some other reason' and we thus get medication to 'treat' these symptoms.

    First things first. Do you have a copy of your latest blood test results. You can get a copy from your surgery and they must have the ranges as labs differ (just to complicate things). Post your results on the Questions section for comments and we will do our best. If your GP hasn't tested your Vitamin B12, Vitamin D, iron, ferritin and folate ask for these to be done.

    It's a fact, that if levothyroxine doesn't make you well, we have to read and learn as much as possible ourselves and with input from the forum try our best to recover our health.

    You are right in that if more endocrinologists/doctors had a problem with their thyroid gland that we might receive better care and alternative medication.

    Best wishes

  • Your tsh is still 6.82. Geeez your gps are useless

    have they tested

    ferritin

    folate

    b12

    calcium

    vit d3

    magnesium

    thyroid antibodies

    where in the country are you ? Because there are a few decent endos who know what they are doing

    i suspect your ferritin and folate are very low and you cant properly utilise the levothyroxine or you might be much better taking a natural dessicated thyroid

  • You are on a very low dose at 50 mcg. No wonder you feel ill and your TSH is high. When you go to ask for all the blood tests mentioned here, why not take a list of your symptoms and ask for a trial of an increased dose of Thyroxine, at least 75 but hopefully more. Alternatively change your doctor. You have to get your life back and this one is doing you no favours. Hope you get the help you need soon.

  • Hi - welcome! :)

    Some great replies above!

    Louise

    x

  • You may have the auto-immune version of thyroid illness - Hashimotos. So ask for anti-bodies to be tested. Anti-TPO and Anti-Tg

    I think there are more women than men suffering as they are more inclined to keep pushing the GP until they find answers. I think men often put up with things and bury their heads in the sand. Maybe why there are more men with heart issues - as that can be undiagnosed thyroid :-) At least you have a diagnosis - keep with this forum and you will be well in no time :-)

    b12deficiency.info/signs-an...

    Read the above site thoroughly and you will see how important B12 is ....

  • A TSH over 6 is no good at all. I feel ill if is over 1 and even then I have lots of symptoms such as very painful hands (carpel tunnel syndrome0, dry skin, constipation, not able to lose weight. If you get and antibody test and the result is positive then you need to try a gluten and dairy free diet to help reduce the antibodies. Personally I would change doctors surgery but ask some pertinent questions before signing up with another, such as do they encourage patients to try to improve their health? NHS say we should be more involved in our health care, but GP's don't seem to have heard the message! As you can see it's a steep learning curve but you will get results eventually and there are so many helpful and supportive people on this site. It has helped me a lot.

  • Welcome! Loads of good replies and you definitely need to educate yourself as much as you can.

    I understand your point about confidence and it's hard having a condition that can take over your life. As regards stamina and exercise, you need to be careful and not overdo things. Even just a short walk in the sunshine can lift the spirits.

    Take control of your health cos GPs are unlikely to help so don't waste too much energy on them.

  • Hi there. Apart from the fact you're a guy I could almost have written your post myself. There are some great replies on here already & I'll try to keep mine brief. I struggled for 7 yrs even though my GP was sympathetic . By all means ask for the tests others have recommended but I finally got alternative treatment with Armour thyroid by Writing to my doctor - once I'd gone into print - & used the magic phrases "quality of life" & "duty of care" it seemed to galvanise him into action. He still wouldn't give me Armour citing some mumbo jumbo about being unlicensed & not wanting to stick his neck on the line but I'd done my research & found a cosultant who I thought might listen so he referred me. The consultant epitomised everything that constitutes good practice . He listened. Advised some patients need to have their TSH at the low end of the range & long story short I got Armour. It's not a wonder cure but I'm more awake & able to function better though still get tired if under stress. I ended up taking redundancy & even now I don't think I could cope with the challenging job I had before. I'm not sure if that's thyroid, age or I just don't want to though!! Good luck in your quest to regain your "self" & health.

  • Sorry life is such a struggle for you at the moment. There is light at this end of the tunnel so don't give up trying different solutions.

    After you're on a higher dose of Levo you may be in a better position to consider a change of diet: how about trying to cut out the gluten and reduce the amount of wheat you're eating (food labels indicate wheat in almost everything)? Look up Dr William Davis talking about Wheat Belly. Going dairy-free helps too. Maybe a paleo diet will help to support your male identity: look up Professor Tim Noakes talking about a low carb.diet. All the best.

  • I've been experiencing the same symptoms for years. Been on thyroxine for over 8 years and it only got worse each year. But I've manage to get armour thyroid prescription through NHS. Only been on it for two weeks but feel much better already. Most of the aches has gone but I know armour thyroid is not for every one

  • 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 a**** 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 c*** 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 c*** 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 b***** 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.

  • Hiya, just to say that you might want to post this as a new post so that it gets more reads. People who have already posted won't know that you've posted again unless you specifically click "reply to this" under their posts. Will try and read you post myself tomorrow :-)

  • Ranting is quite understandable - can we please just ask that you extend your **** to include a couple of other words...! Thanks! :)

    See above.....! ;)

    Or try to leave them out.....! Ta ;)

    L

    x

    healthunlocked.com/thyroidu...

  • According to a user on here, no trail is left if a patient's records are altered. Hopefully she'll see this post and give a more accurate picture.

    Could I make a polite request for plenty of paragraphs to be put into a post - many of us here struggle with reading large blocks of text. Thanks!

    Plenty of us have been let down by the NHS but you could make a written request to your surgery to be referred to an Endocronologist of your choosing (Louise has a list of names that have been recommended by users). Alternatively go the private route by paying for your own tests and consulting with Dr P or others that are on Louise's list.

    There comes a point where you're wasting energy with GPs who don't care. I've been repeatedly misdiagnosed by 3 GPs with depression and it's taken 4 years to receive a diagnosis of hypothyroidism. Am now going through the formal complaints process and, do you know what, the General Medical Council, who are responsible for ensuring patients safety, don't give a stuff about my being failed by these GPs. This is the same organisation who did nothing about complaints from the relatives of Harold Shipman's victims.

    Good luck!

  • Hi Diamond, as I had a few replies I thought I would just reply on the end of the thread to make it easier for people to know what I was replying to. Thanks for the advice, always good to get tips on how best to use these forums :-)

  • That is a good idea. But it is also true that the Latest Activity screen moves very quickly and general replies can often get missed. :(

    It would be a shame to have typed all that - and there is some great, illuminating, information in there, and have very few people see it! :(

    HU will soon be introducing the ability to follow activity in some way - and it can't come soon enough in our opinion! :)

    L

    x

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