Thyroid, doctors, weight gain, ...at my wits end!

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Ok, I dont really know where to begin with this but 6-7 years ago I had an extremely active job (I won't mention what it was) but it involved a lot of walking, running, physical effort. I had the use of a gym at work and some lunchtimes I would work out and in addition I was a member of a local gym and regularly worked out there. I began to notice that I was seriously putting on weight and my clothes kept getting tighter and I kept going up a size. I expected to get heavier after all I was doing a far bit of weight lifting, so I increased my cardio but still the weight kept piling on.

Eventually I went to the doctors who diagnosed me with an under active thyroid & put me on a starting dose of  Levothyroxine 25Mg? this did nothing to remedy my problem... I have always been a large person with a rugby players build but I seemed to be gaining inches by the month. The doctors kept monitoring my blood and upping my Levothyroxine until I reached 300Mg (which by all accounts is a massive dose) and still the weight does not shift.

I am tired all the time, constantly get muscle ached, get headaches and double vision, tinitus.... I now longer work where I was and am now self employed as keeping my own timetable is the only way that I seem to be able to function.

The doctors now no longer monitor my blood unless I happen to go to them for something else and even then it seems to be an afterthought. I have had doctors telling me that my diet is to blame, but most of what I eat is freshly prepared, no ready meals and very little sugar and fat. One docotr even told me that there was a great App that I could download to my phone that will scan the barcodes of the meals that I eat!!!! As I said I do not eat ready meals! They have also told me that I need to decrease my alcohol intake.... Apart from the occassional organic cider I do not drink! I drink organic organic cider because I do not like overly sweet stuff. The doctors seem to just go through the motions and just see a big person in front of them and read from the script. It has got to the point where I dont even bother with them half the time and only go to see them if absolutely necessary.

I have been refered to a "specialist" on two occasions, the first was a dietician who would not believe what I told her, and she insisted that I was obviously a drinker who ate too much, the second specialist was the diabetes clinic who seemed a little puzzled as to why I had been refered to him as I did not have diabetes.

I truly am at my wits end, Levothryroxine does nothing but make me feel like crap and the wieght shows no sign of moving. The medical staff dont seem to care and talk down to me as I am to blame. My memory is shot, my energy levels are non existant, I constantly ache and now on top of everything else I have developed Gout which again the docotrs seem to infer is my own fault.

Can anyone help?

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15 Replies

  • Posted

    Hi Deefer,

    How did your GP arrive at Hypothyroidism?  did he do a blood test because you do not mention or show your results. Persons on this forum with hypo or hyper -thyroidism usually show their bloodwork results and from these people with the same problem can help one another. It sounds as the docs just cant be bothered with you as you say they indicate its your own fault. I can understand how frustrated you must feel knowing you do not do anything to gain weight and feel the way you do.  What is your typical days menu? Have you been referred to an Endocrinologist who specialises in the thyroid.  Under the Patients Charter for England and Wales you are entitled to a second opinion if you are extremely worried about your symptoms.  If you go online and google Patient's Charter England and Wales you can get the info you need to be well armed when you approach your GP for a second opinion.  I assume you are a UK resident.   hope this helps...best wishes..  

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    • Posted

      yes I am in the UK.  I had numerous blood tests although  I never got to see any results, I was just told that I have an underactive thryoid. My typical days menu is:

      Cereal - Normally weetabix and skimmed milk for breakfast, weekends I have a bacon sandwich

      A sandwich or Ramin noodles for lunch, being self employed I eat as I work

      Evening meal is normally a proper meal, we eat a lot of pasta dishes, wraps, rice dishes, stews with pulses etc etc

      Snacks are an occasional packet of crisps, Peanut butter sandwich or apples or bananas

      I dont take sugar in hot drinks and have 1% milk, I also drink a lot of water as I have found that it keeps the gout away.

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  • Posted

    hii agree with Lilian. yo may need to see an endocrinologist (not just focussing on diabetes). please look at the website for the pituitary foundation and look up some of the signs and symptoms. not trying to panic you but am concerned by your double vision.

    could it be one of the various (non-cancerous) pituitary tumours? 

    they have a lot of documentation on there including somthing aimed for GPs. the problem is that pituitary conditions are extremely rare and the symptoms not usually picked up until too late.

    if you think that you match any of the conditions on that site then print out the relevant page and take to your GP as back-up evidence.

    wishing you all the best

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  • Posted

    Have you been checked for Hashimoto's antibodies?  If not, ask for that.  Also some hypothyroid patients do not do well at all on levothyroxine and require something with both T3 and T4 in it like Armour or you can add Cytomel to your levothyroxine.  You may have a fatty acid oxidation disorder which is a genetic condition and requires being assessed by a genetic metabolic specialist (that's who I work for).  Some patients do well by adding L-Carnitine to their treatment regimen but usually that works best for hyperthyroid patients, although I have read one article that said hypothyroid patients also need this. 
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  • Posted

    Hi Deefer,

    You should ask your GP for sight of your thyroid results and put them on the forum so someone who is familiar with them, on the forum, can explain what it means.  You have a fairly good diet, but I would cut down on the carbs a bit, pasta rice and wraps. Have fish salmon, mackerel and veggies chicken and cous cous and salads.  Carbs turn to sugar and can cause you to put on a weight. Don't deprive yourself have pasta and rice now and again. Ditch the crisps and bacon and peanut butter sarnies. Substitute them for wholemeal toast and more fruit with cereal such as porridge also natural low fat yogurt with fruit grapes or blueberries good sources of antioxidants. You will also be taking in good bacteria from the natural yogurt for your tummy flora which aids good digestion.  Water is good! See if these changes make a difference obviously over a period of time. Hope you have looked up the Patients Charter on the net....hope this helps..best wishessmile

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  • Posted

    Hi, I'm in the US, so I'm not necessarily familiar with UK practices.  Here, we won't necessarily get copies of our lab results unless we ask for them but if we do ask, we should get them.

    I would be particularly interested in what they were when they decided to stop running the tests.

    In order for the levothyroxine (L-T4) to be useful it needs to be converted in the body to T-3 in a process of deiodination which occurs in the liver.  Some people have trouble with this conversion so L-T3 (aka Cytomel or Liothyronine) needs to be supplemented.

    There is also a problem with exercizing too much or eating too little.  If you are not getting nearly the calories you need to maintain your resting metabolizm your body may think there is a famine and will program your body to conserve calories and you get fatter.  One way it can do that is to convert T4 into Reverse T3 which cancels out what the thyroid is supposed to do.

    I would say you should eat healthy food with some carbohydrates, fat, and adequate protein even if you gain weight at first.  Then when your body recognizes it is getting what it needs you will start losing weight or you can begin to change your diet in small steps.

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  • Posted

    Hi deefer

    I forgot to mention to you that under the 'Freedom of Information Act' you are entitled to see your medical records......best wishes...

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    • Posted

      I have had lengthy discussions with my wife and I have booked an appoitment to see the docs on the 3rd of Feb and i will be taking my wife who can be more direct than me as I feel I have become very dispondant about the whole situation due to not being listened to. I will see what comes from this next appointment I will also get my test results and post them up.
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    • Posted

      hi

      good luck with your appointmént and excellent idea to take your wife along. i'm still really concerned about the double vision.

      have you noticed any increase in shoe size? 

      please let us know how you get on

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    • Posted

      That sounds good deefer....but don't forget the doc is there for this/her patients and they are public servants.....don't be nervous to state your case if he/she asks you anything which they will because your the patient in question. It good to take your wife because she can back up the medical situation you find yourself in.........best wishes hope all goes well.....keep us informed.....
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    • Posted

      I have decided that while I wait for the doctors appointment that I am coming off the Levothyroxine, Its only been a couple of days but it feels like a fog is lifting in my head and I am not getting the sick, achey, feeling that I have become accustomed to after taking my meds each morning. 
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    • Posted

      I think you are doing the right thing, especially since it makes you feel better.  It is funny that the same symptom, "brain fog" should occur at either extreme of the thyroid levels, that is, both hypo and hyper.
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  • Posted

    Hi Deefer,

    I really feel your pain. Ive had Hashimotos for 15 years and I can't rmember most of that time. i used to have a vibrant job -social life ate drank what I wanted and travelled. To look at me I look normal maybe a little skinny (much trouble with thyroid meds) But my insides feeled mashed - somedays I wake up fine, other days it's like i'm in another persons body- crumbled in pain, discomforts and off my head not being able to think straight. I have regular blood took and fairly frequent dosage changes it would appear i'm sensitive to hormones (great!!) which has landed me in A&E twice thinking I was having heart attack or something- These days I stay home alot and do things at my own pace- so fustrating. I get asked lots of questions and support for my asthma (which only started after a mega thyroid blip) but I get no support for Thyroid diease- have had lots of bloods and appointments- all I get is shrugged shoulders and "this is how thyroid disease is"- get on with it- basically. I have found the more natural my diet is the better control I have of it, plenty of fruit, veg, water,rest and exercise- can't do ready meals takeaways caffeine alchohol, too much sugar/fats, late night or getting tired and stressed out make things worse. This disease does control my life. It's tough going - i'm 46 but feel 76 somedays. If you find some miracle cure do let me know! We battle on till then, take good care fellow sufferer smile

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  • Posted

    Hi deefer

    I dont think you should stop your meds abruptly...wean yourself off over a few weeks..take every other day then three a week, then two a week, then one a week then stop....your body will have gotten used to not having as much and then none at all....and you will not feel a bad effect.....hope you get things sorted soon...best wishes...

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  • Posted

    OK, so update time. I have been off the Levothyroxine for 8 days, the first few days were rough but no rougher than what the meds did though. I had a cracking headache and felt like I had been pummeled in the kidneys, & I was physically wiped out .... But after 4-5 days most of that had gone.

    My head feels so much clearer and am no longer feeling like I am thiking through a fog, the bloating in my abdominal section seems to be subsiding so much so that my jeans keep slipping down, I wouldnt say that I have lost weight but am not as bloated and round. My energy levels are returning, my wife and I do shows and festivals and normally the set up and break down of the stand will wipe my out for a day but we attending the first event of the year this weekend and although set up left me rough the break down was down in almost record time and I had plenty of energy to spare.

    I am not declaring a complete victory, but it would appear that the meds are a definate contribution in my feeling rough for so long. I am now looking forward to see the doc next week. Thanks everyone for the advice and support and I will keep you all advised as when stuff happens

     

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