Tips for managing the 'condition', please ... ?

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Hello!

This experience forum (just discovered) is so interesting and useful, but I have difficulty concentrating so have been struggling to try to absorb the information here ... so apologies for taking the lazy way and posting a new experience requesting information, but I'm sure you will probably all understand & sympathise. Skip the next two paragraphs and go to the last one if you just want to read my question/s - any and all suggestions greatly appreciated ...

I was diagnosed with underactive thyroid over a year ago and have been on levothyroxine at 100mcg a day ever since. I believe I had the condition for up to a year or more before this as I'd been suffering for a long time and was too scared to go to the doctor in case it turned out to be some fatal cancer or something (backward thinking I know, but I have a bit of a phobia..). My symptoms were tiredness, obviously, & low mood; loss of ability to concentrate/poor memory; aches and pains I had almost come to believe were early-onset arthritis; sometimes pins and needles in fingers & hands; occasional dizzy spells; very poor hearing; dry skin and hair; ver intolerant of the cold (and possibly a couple more I've temporarily forgotten about). The last 6 I had had for quite some time, and the last 3 pretty much all my life so I feel this probably somewhat masked the fact my thryoid had packed up. I also suffer problems with my eyes - I have blurry vision; floaters; they are very slow to focus; and sometimes they hurt a lot after a long day at work.

My symptoms never improved and on returning to the doctor I was repeatedly told it was my diet that was to blame (I admit this consists of lots of junk foods etc). I was also told that the dizziness was unconnected to the thyroid problem and yet this is perhaps the one symptom that has improved with the medication. I find it very difficult to improve my diet and cook healthy meals when I am so tired all the time, it is all I can do to get myself to work and back each day (and sometimes I sit at my desk virtually pretending to work because my concentration is so bad!) Eventually I was offered a low dose of an antidepressant, which for a short time I thought was helping improve my mood but now I have gone back the other way again and actually feeling more exhausted than ever (and wondering if thyroid has packed up some more and could do with an increased dose of thyroxine). Obviously if I am depressed then exercise should help it but I can't even attempt exercise, the 6 minute walk to the train station for work in the morning is now taking me 10 and is exhausting. It isn't right that my entire life consists of desperately trying just to hang onto my job and having no social life or other outside interests - I can barely keep on top of the household chores, and at times I don't get them all done (and the place looking like a bomb-site makes me feel even more depressed).

I haven't the courage to go back to a doctor again yet as I've just moved house and changed surgeries but I'm pretty sure that my old surgery wrote in my notes that I'm a hyperchondriac and I don't want to create the wrong impression with the new surgery.

My question is as follows:- [b:3317ef173f]is there anything I can do to help myself?[/b:3317ef173f] I read that taking the tablet 1/2 hour to an hour before breakfast might help (although one doctor said 10 mins would do) - what about how much water to take it with, big glass to wash it down or will this just dilute it too much? Should I just see if a referral to an endochrineologist is a possibility? Are there foods I should avoid? Has anyone been recommended a healthy balanced diet to follow that they can share here? I really really hope some of you can offer some help - typing this all out has actually made me realise how much this has been getting me down...

Thanks in advance - Sazz smile

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  • Posted

    I just remembered more symptoms (not sure how I could even have forgotten!) ... slightly deeper/huskier voice; painful neck, around the thyroid location, which actually coincided with starting to take the levothyroxine (comes and goes); difficulty swallowing at times (also comes and goes); NO libido whatsoever anymore; find it next to impossible to get out of bed in the mornings (it's a good job we have flexible hours at work!)...
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  • Posted

    I'm so sorry, I remembered yet another sympton which is weak arms ... you get the picture anyway, it's getting to me more than a little!
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  • Posted

    I have been where you are. Have a look at my post which is a few back, Called Thyroid v Old git syndrome. I am much much better now.
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  • Posted

    Hi Sazz

    I was diagnosed with hypothyroidism three years ago - I believe I had it much longer than that.

    I have most of your symptoms and really do understand what you're going through. I've seen anyone and everyone, that is: GP, herbalist, endocrinologist, private doctor, and now back to my GP.

    I was put of T3 for a while as that has helped quite a few people, unfortunately not for me. I have all the classsical symptoms of hypothyroidism and am on alternating days of 75mcg and 50mcg thyroxine. Alongside this, I take a Vit D supplement due to low vitamin d levels which can cause muscle pain and depression; B-Complex and B12 to help with energy and the nervous system; vit c; iron for anaemia; fish oils; and recently anti depressants. I also have brazil nuts for selenium and other nuts for magnesium and zinc.

    Despite all of this, I'm still suffering from fatigue and have Fibromyalgia (muscle pain). I'm going to start having massage from an Ayurvedic Clinic (it's an indian form of massage using oils to help alleviate pain). I've thought about acupuncture but don't know anyone that it's worked for.

    I have terrible mood swings and just feel like an old woman - I'm 38 and have 3 children.

    I am practically housebound and this just contributes to the depression. hence the anti-depressants. Currently, I'm having Cognitive Behaviour Therapy to help me to get up and do things - the GPs suggestion and he wants to refer me to a Psychiatrist! Can you believe that!? I do have 1 or 2 good days in the week but, when I get a 'flare up' due to the Fibromyalgia I feel terrible.

    You're not alone, this site is great for support. If you don't feel well then go back to your GP and ask for what help you'd like. If you want to see an endocrinologist then ask to be referred. This is your health and do what you can to help yourself, don't let yourself be fobbed off.

    There's a site called ThyroidUk, take a look at it. There are so many thyroid sufferers and many of us are left to deal with it ourselves - it's sad when we're supposed to be in the so-called 'developed world'.

    Going to your question on when to take thyroxine; I take mine an hour before breakfast with a full glass of water. I take my supplements 6 hours after the thyroxine. I have to take my iron and vit d at least 6 hours apart, too.

    Get the lump in your throat checked out. My thyroid fluctuates, so if I'm taking too much thyroxine my throat feels it has a lump in it. Some people also have this with low levels of thyroxine.

    Take care darling, let us know how you get on.

    hope things work out for you. :wink:

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  • Posted

    Hi

    It sounds to me that both of you require more Thyroxine! I am currently on 175mg and have been working my way up each month until i feel better. Think i need a little bit more but i am a different person now. I used to be the same as both of you but have been getting better with each increase. Also i was aneamic so i now take 400mg of iron and 1000ug of B12.

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  • Posted

    Hi Sazz and MS1

    I have had an underative thyroid for about 8 yrs now and have never really felt right since, have all the symptoms you have Sazz and my thyroid tests always show my levels are now normal! sorry can`t give you any help practically but you are certainly not alone and as the others have said this is a great site for support. MS1 I also have fibromyalgia diagnosed 2yrs ago and regularly visit the fibro forum on here, they are also a great bunch for giving any help and support they can, but its strange but several others seem to have thyroid problems as well, so am wondering if there is a connectionbetween the two conditions? anyway take care and hope we all find some answers soon!

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  • Posted

    Thanks for the replies!

    I've been increased from 100mcg of Thyroxine to 125 and felt a bit better for a few weeks (had to talk my doctor into this a little bit as apparently my blood test showed I was within the normal range) so I was pleased about that.

    Unfortunately I now feel seriously worn out again and I'm not sure whether it's just because I've had a busy time lately (got married two weeks ago!) or perhaps I need another increase.

    I'm going to try looking up a healthy balanced diet as I'm sure my lifestyle of living on junk food and take-aways isn't helping! If I find anything helpful, and especially if it seems to get results (assuming I can stick to it!) I'll report back...

    Thanks again smile

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  • Posted

    Hi there. Sounds like you are really having a bad time of it. I have been there too. Been a sufferer for 13yrs now although symptoms vary some worse than others I have learned to live with it. However there are times when I feel damm ill and too tired to even get out of bed of a morning. My main symptoms are weight gain, severe memory problems (cant seem to retain much atall these days) Concentration, Dry skin, tiredness and constantly feeling sluggish, and the list goes on. Oh and not to forget total lack of labido. I have also just been diagnosed with fatty liver disease which was checked out with a scan after having severe stomach discomfort and swelling, also Polycystic Ovary Syndrome. So am feeling bit sorry for myself at moment. Since having known about fatty liver I have made a concerted effort to be more healthy. If I lose weight then thats a bonus as really just want to be and feel healthy and fit. I am 14 stone now and was 10 stone when first diagnosed and have just kept getting bigger steadily over the years. Now a size 18/20 I am determined not to get any bigger and to turn my health around. The only way I can see is to change my lifestyle. I admit to binge eating and eating the wrong things i.e cakes, biscuits , too much butter etc etc. It is so easy to take the junk food option because it gives you an immediate high. Yes it tastes great and when you eat it it gives you energy and makes you feel better if you're fed up, however that is only temporary and you have to live with the long term effects of what that food is doing. I know it is not easy and seems almost impossible to get out of the cycle but you can do it. You deserve to feel better and your body deserves to be fit and healthy. Thyroid disease is a real devil and has lots more underlying problems than most folk believe but dont let it beat you. If you are not feeling right get back to that doctor and dont let them just dismiss you. If you think you need tested again then you are entitled to it, These doctors are too quick to fobb you off with bad diet etc.

    I have now been on new lifestyle ( not calling it diet) as you cant be on diet all your life , but you can change the way you think about food and what you put in. Hate to quote that Gilliam Mckeith but I do think you are what you eat. Ive started eating Activia Fat Free, 2 packs of 4 for £3 Morrisons or Asda. Fat free Yoghurt drink and Bran flakes for breakfast. Alternativeley you could have Wheatabix, alpen, anything with lots fibre. Prunes with Low fat greek yoghurt and squirty honey is nice. For lunch have tescos light tortilla wrap filled with salad, ham etc. Still have a main meal at night but smaller portions. If I fancy a treat which I admit is all the time I just have a banana or low fat cereal bar. Weight watcher crisps are good. There's lots of low fat alternatives but watch out cause some are also full of sugar. I am not preaching and can not tell you what to do but only tell you what I have done and that at present it seems to be working. It is flipping hard to turn yourself around but it can be done, I just think about everything I am eating and what it might be doing to me if I eat the bad things. You will get more energy. I've just been to lakes for weeks hol and managed to climb two mountains, no idea where the energy came from but I know 6 months ago I couldn't have done it. When you take your tabs just have as much water as you can stand first thing in the morning its hard to have lots of water before you've eaten, but what would recommend is to try to drink atleast two litres of water each day. I started drinking no added sugar high juice to make it more interesting. I have just been upped from 125mcg to 150mcg. Was 50 when first diagnosed. Having trouble regulating lateley but hope this increase will give me a boost. Dont give up on yourself Sazz. I feel for you, I really do. Some days I have trouble functioning at my work, but I work a

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    Sazz, Sorry I didn't congratulate you on your recent marriage. All the best to you. I remember when I got married 6 yrs ago now but it was blooming stressful, what with moving house at same time. You are bound to be shattered and settling back down to normal life takes time. You use up all your energy what with planning the wedding and all that goes on doesn't half take it out on the body. Its great to look forward to but grat when it's all over. I felt tlike a brick had been lifted when my wedding day was over. Hope you had a fab day!

    CharlotteX

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  • Posted

    Hi

    Just to reassure you ( and me) I suffered with just about all the symptoms you described! I thought I was going mad, becoming a hypochondriac or dying!! Finally found a doctor who listened to me and let me cry about how bad i was feeling and got bloodtests done...hurrah was a shock to be diagnosed but a relief that i wasn't going crazy! I still suffer with symptoms daily, nausea, tiredness, aches and pains and generally feeling rubbish, but I battle through knowing there is a reason for it! Has been almost a year since diagnosis and am now on 75mcg daily. I take mine 30 mins before breakfast, with a glass of water. My diet does affect me..I love chinese food but it doesn't love me!! Eating lots of fresh food and fruit/ veg seems to help!

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  • Posted

    Hi

    75mcg is still a fairly low dose so you may well need an increase. Have you had recent bloods done ? ideally TSH needs to be 1 or below and T4 at the top end of the range.

    Keep a copy of all your results so that you can keep track of how you are doing.

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  • Posted

    I have been taking levo for 4 years and have never felt any difference in my health in fact i piled on weight.

    My GP has just pulled the plug on my medication because i am not registered as unemployed therefore not paying into the national insurance contributions pot.

    I am also not in receipt of benefits so i can only think it is because of the contributions burocraticas.

    Whilst taking the drug though i experienced terrible arthritis symptoms in my knees when walking and in my general well being pretty much still over weight but i am never depressed and i laugh a lot at myself.

    I think it is the evening primrose, so i think all you moody people should go out and buy yourself 1000mg bottle...[b:9d00898462][/b:9d00898462][b:9d00898462][/b:9d00898462]

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  • Posted

    Tweet

    Your message doesn't make sense, sorry but if you have been diagnosed with hypothyroidism you have to have a replacement drug of some sort whether that be Levo or an natural Armour type med. You cannot simple stop taking it as that is dangerous, in time your body will simply not function without medication.

    I don't understand the bit about unemployed, national insurance or benefits, what has that to do with your GP and stopping medication ?

    I strongly suggest that you find another GP who will put you back on your meds before you begin to have problems.

    Not all people with thyroid problems are depressed or moody and I think the implication is unfair to people who do have problems. Evening Primrose may help you but it is not a replacement for thyroxin.

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  • Posted

    Tweet... You need to go back to your doctor asap, If you have 'AutoImmune Hypothyroidism' you may also have another autoimmune desease as I found out to my cost. Almost 6 months ago I had an MI (heart attack) turns out I have pernicious anaemia this means your blood doesnt carry enough oxygen around your body and consequently your heart has to work harder, mine had had enough of the years of hard work and at 46 it's a shock.
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    Doctors have a habit of stating that the patient's blood tests are 'normal'. This term is incorrect, the results just happen to be within the reference range and if you look at the blood test result sheet that is returned to the GP, you will see that the results are just a guide and must be taken also with reference to the symptoms.

    Ranges were never meant to be the be all and end all.

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