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

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..  

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

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. 

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 wishes

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.

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...

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

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...

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