Thyroid UK
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Please offer me some hope!

Seeking hope. I am a 20 y old female, diagnosed with hypothyroidism (with thyroid antibodies) around 18 months ago after piling on 3 stone seemingly from nowhere (no changes to diet or exercise or lifestyle) since then I have fluctuated doses of levothyroxine, 50 to 75 to 100, and then reduced back to 75 as gp said I was over treated (tsh 0.75). I have never felt truly well since being on levo . Minor improvements in fatigue, joint pain and fogginess, but still experiencing symptoms that massively impact my day to day life. Being a 20y old who's too tired to socialise outside of work is extremely isolating. My main issue though is my weight, from Levo I have still continued to gain, admittedly at a slower rate than before, but gain. I've been actively trying to lose weight for 15 months now. I need to lose 4 st. I follow advice from a PT, I go to the gym 4-6 times a week, eat well, no processed foods, avoid sugar etc blah blah all the obvious ways you would lose weight, and yet still I am classed as clinically obese. I have not lost a single pound since being diagnosed, but put on 18lbs. It's embarrassing. I've been told by gp that there is NO correlation between weight and thyroid function which I find to be absolutely ridiculous. She agreed for more extensive blood tests but seems adamant that prescription fat binder pills are the way to go. When I mentioned alternative treatments i.e. Ndt and t3, she shut me down with "this is why you shouldn't go looking on the internet" am currently awaiting blood test results back and think I'll ask for an endo referral.anyone have similar experiences? I guess I'm looking for hope. I really am at my wits end, I just feel like giving up. My confidence has hit rock bottom and I feel like a hermit. I just want my life back!

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A TSH of 0.75 is not overtreatment, unless she did an fT4 blood test and it was high. Hypothyroidism does cause weight gain although it is very difficult to lose the weight once it has gone on. I've never dieted so will just comment from a purely thyroid viewpoint. Very low calorie diets reduce thyroid hormone activity and so are to be avoided. I'd just eat sensibly with moderate calorie restriction and exercise, which you seem to be doing.

I don't believe fat binder tablets have much effect. The research I have glanced at seems to suggest they have a marginal effect. The way medical research works is that they try to prove a product's effect is statistically significant. That is, they need to be 95% sure the product is having an effect. There are two problems with this sort of science. 1. You can prove a product works but it might only give 1% benefit but the trial may still be statistically significant. 2. Manufacturers have big budgets and can finance large trials. If a product is really good you only need to test it on a few people to show it works, if it is of marginal benefit you need a large trail to achieve a statistically significant result. In short, if fat binders were much good we would know about it. The other issue is that you have to eat a fair amount of fat before you get much benefit from fat binders!

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This pretty much summaries what I thought. I was under the impression 0.75 wasn't over replaced, and my ft4 wasn't tested at that time, tsh only! She also pointed out the fat binder tablets could have a negative impact on the effectiveness of levo so I was confused as to why she wanted to prescribe it anyway. I turned them down as I don't like the idea of taking them to be honest. They're also known for causing gut problems which I already have! Feels like a dead end at the mo. Looking forward to getting my results, full thyroid screening, celiac, arthritis, liver profile bone profile and renal profile and full blood count. Is it bad that I'm praying for bad results so someone will take my symptoms more seriously!?

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Ive been classed as fat most of my life and morbidly obese for the last 6 years and I have no appetite for food but I have tried low calorie diets, fat binding meds (which gave me horrendous stomach pain and no weight loss) Ive seen dieticians who tell me Im eating sensibly and they don't know what to advise, obesity clinic offering bariatric surgery with no after care and recently weight watchers where I followed their advice to the letter and ended up heavier after 12 weeks. Ive been fighting all this time to be recognised as having hypothyroidism and just over a week ago I was prescribed levothyroxine. I have mobility problems since an accident while exercising 8 years ago so exercise is difficult but I do what I can. I am at my heaviest ever and Im hoping that now Im on levo and also getting my D3 and B vitamins optimised and eating regularly I will start to lose a bit of weight. However I will never be a skinny minny because my ancestors were all larger ladies and I hate the demonisation of larger people. The way society tries to make it the fault of larger people that everything that is wrong is because people are over weight (according to the magic BMI figures). We are all different with different genes / DNA but we are treated like we should all be the same. Sorry but it infuriates me that Ive had name calling all my life where my weight has over shadowed who I am but no doctor has looked at the bigger picture and my family history of thyroid problems and larger ladies.

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I can definitely agree with you here, it can be heartbreaking when you feel you are being blamed for being overweight. Unless they've been through it themselves no one considers factors such as illness, especially when it is invisible to the outside world like being hypo! And it can be so upsetting trying hard to lose weight and seeing no results or even the opposite! Good luck to you with your treatment, hopefully we both see the results that we deserve soon!

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I understand, your doctor is talking utter nonsense by the way - everyone knows that hypothyroidism makes you put on weight. Tsh of 0.75 isn't overtreated either but really depends on your other results. When was you blood test taken? Always get them as early as possible in the morning and don't take medication before. I am sort of in the same position as you. I am 5'6 and gained 3-4 stone and went from a uk size 10 to a 14. I was also classed as clinically obese. I'm on NDT and very slowly dropping back into a size 12. Budget cuts are bringing the NHS back to the dark ages and now people have access to a wealth of info on the internet, they can find medical papers etc which disprove a the assertions which cut costs to the health service at great cost to the patient. My gp, I think, would give me my NDT. She was happy with me getting it privately but said they couldn't prescribe it. That's not entirely true, it's in the process of being removed from NHS lists but there is great pressure on doctors not to prescribe it. My gp/the lab do T3 tests as a matter of course as well. When you get the test, get your results and post them to the site (with ranges - the numbers in brackets). I suspect you probably need T3 but without the results I don't know. Also check vitamin d, b12, thyroid antibodies, ferritin and folate. Horrible thing to have at 20, mine started at 25/26 so trust me, I know how you feel. Good luck x ps you might also try cutting out wheat and dairy separately for a period of time, those things (and sugar) don't particularly agree with those with hypothyroidism- I try and avoid wheat and sugar as they don't really agree with me, dairy is ok.

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Thankyou for your advice and sharing your experiences! I'm 5"2 and currently between size 16/18. All happened so quickly as up until my 17th birthday I never strayed from a 8/10! If you don't mind me asking, how long have you been medicated properly for? I'm sure it will take me a long time to shift the weight but I can't help but dream that by my 21st birthday I'll actually feel good in my own skin! Sigh! I once cut out sugar to no result, but next on my list is wheat and then dairy, see how it goes. Xx

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Yeah I was the same! 8-10 always! I have been medicated for about 6/7 years... I lost all the weight about 5/6 years ago then I had a car crash which meant I couldn't cook like I had been and around the same time it all went wrong again. To be honest I hadn't felt 100% because I had vitamin deficiencies that hadn't been diagnosed. Before I was diagnosed I didn't even consider hypothyroidism, but I was at uni and sleeping all the time, not going out and going to the gym loads and eating healthily but had gone up to a 12... I just thought it was my age. I only considered hypothyroidism when a doctor said I DIDNT have it (I had actually gone about painful periods and she just checked me for everything). I knew 2 of my aunties had hypothyroidism so I looked up the symptoms and found that I had loads of them! I then came across this site and realised how reluctant the NHS are to diagnose it so I went to the late dr skinner and the rest is history. I always had the utmost faith in doctors until this to be honest and I think anyone with a chronic health condition should really research it because no one is going to care about you more than you and no one is going to know what you're going through unless they have gone through the same thing... it will take time but u will get there u just have to relax about the weight and stuff cuz it's something u will go through from time to time and trust me, I know it's hard.

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That really gives me hope thankyou for sharing! I try my best not to dwell on my weight as I know that it's not the most important thing, but it is so hard and it overwhelms me sometimes. I really wish there was an easy fix! I definitely agree with you about doctors, I've grown up with huge respect for gps but since my diagnosis I feel cheated, bullied and ignored! X

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Oh no, the weight gain is awful and I think psychologically the impact is rough and that's as bad as anything else. Just don't lose hope x

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I'm so sorry to hear about your situation and I can quite understand why you need hope. The other responses are right, a TSH of 0.75 does not mean you are over replaced and you should not have had your dose reduced. And yes of course being hypothyroid does go hand in hand with weight gain. I would urge you to ask your GP for a referral to an endocrinologist since you are still having multiple symptoms and your Gp is ignorant about the disease. Unfortunately it all endocrinologists specialise in thyroid disease, but it's worth a try. If you can afford to have private treatment then there are doctors who will prescribe T3 or NDT, even a few on the NHS if you shop around. Thyroid UK admin do have a list of sympathetic doctors it might be worth asking for.

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Thank you, I do have access to private medical cover through my job, however it clearly states 'not applicable to chronic or incurable illness.' Rubbish! Never mind, will see how results come back next week and take it from there again!

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I wonder if you could argue that your thyroid condition is still in the acute phase? After all your GP is still adjusting your dose. May be worth a try? Good luck anyway. I should have added that on NDT I've lost weight and feel relatively normal!

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Most medical cover does cover chronic illness such as hypothyroidism during the early stages of diagnosis and treatment. It's only once treatment has stabilised and is long term that they stop funding it. I'd see if they will cover a referral to an endocrinologist on the basis your doctor hasn't identified the problem.

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It might be worth seeing a different doctor at your surgery if that's at all possible.

Thyroid Uk run this forum and have a very useful site you can look at. I'm sure they will also have info that says that your doctor is wrong lowering your meds. So print out anything that helps your cause and when he either says it's rubbish or not to read things on the internet then point out that the site is recommended by NHS Choices for thyroid dysfunction!

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I have seen a variety of different doctors at my surgery over the last year, and believe it or not she has been the best! Even with the comments I find to be absolutely ridiculous, she has at least put in for extra blood tests. My results will be in on Monday, so will take it from there to see how she wants to go forward, and then maybe will have to look for a different doctor. I have printed loads of info to take with me this time that SHOW where they've been printed so I can't be accused of finding random scaremongering articles!! X

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Lets us k now how it goes and post your results with their ranges!

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I wonder if your exercise regime is putting too much stress on your body. The PT isn't necessarily taking account of your thyroid issue. From what I've read, the body works hard to retain calories when it's under stress. Try switching to swimming, walking in nature, cycling, yoga or mild weight resistance training if you enjoy that.

The same goes for food, try not to restrict calories on a daily basis which will stress your body. Instead try having normal calorie days some days with low calories on other days, so your body doesn't feel under threat of starvation.

Also make time for relaxation activities like reading a book, taking a lavender bath or have a massage so that your body feels loved! Try to get out and socialise with friends and family, especially ones who make you laugh. If there's a local choir, singing is great therapy!

You may have food sensitivities which can place an additional stress on your body. Gluten is a very common one so you could try cutting out wheat for a few weeks and see if your symptoms improve.

You may also have low cortisol, you could ask GP for a blood test which should be done at 9am, although it sounds like GP is particularly unhelpful, might be worth asking to see a different doctor.

Also ask GP for tests on ferritin, folate, B12, Vitamin D as these all need to be at good levels for your body to function well. Get results with ranges and post them in a new message. Private blood tests are available if you don't have any joy with GP. Good luck x

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Thankyou for your advice, I often wonder if I'm actually doing more harm than good with the amount of exercise I do, but I also have a fear of stopping incase of more weight gain, vicious cycle! I don't feel I am overexerting my body though as I have such little energy to burn I don't do half as much as many gym goers I know.

I had a blood test for all those you've mentioned, and also arthritis and celiac thrown in there too on Monday so currently waiting for results. Feels like gp wants to find anything else to blame everything on! X

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Now you've had the celiac test it's worth cutting out wheat as many people are sensitive to it without being celiac. Sensitivity can cause brain fog and fatigue so well worth trying.

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You are either under medicated or your body is not converting the Levo to T3.

Before I had my thyroid removed in 2015 I had never had thyroid problems and was not on any medication. After the operation I was put on Levo. After 6/7 months of aches and pains and feeling ill I joined this site. I also put on 10lbs in just a few months. I had never been overweight in my 69 years.

I then joined this site and am now self medicating on NDT. The weight I had put on dropped of in 2/3 months.

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I believe that my body isn't converting correctly as I'm very strict with taking them exactly as described, and very rarely miss a dose. I found the joint pains excruciating before levo, and even now I still struggle. Awaiting test results for arthritis along with everything else! Glad to hear your weight returned to normal, gives me some hope that mine one day will too. Xx

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It is possible that your joint pains are due to low vit D.

I am hypothyroid, was on Levo, had awful joint pains as well as many other symptoms.

Raising my vit D stopped the joint pains.

Good luck

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Currently waiting on blood results for my vit d levels! Do you just take vitamins to supplement now?

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Yes, I use the spray from better you.

Brilliant

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My problem was just caused by Levo alone. Before my operation I was walking, swimming one mile every week and doing daily yoga.

I don't think that your problems are any thing that is not related to taking T4.

Because of the short time scale between me feeling great in 2014 and then the operation and taking Levo I have a good idea on what caused my demise.

I think that when you get your right balance your weight will drop and your pains will go the same as mine did.

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I really hope so. I am at my wits end!

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Just wait now and post your blood test results. Someone on here will help you get to the bottom of it OK?

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This site is so lovely. Cannot believe how many helpful supportive people can give you help and advice! Just wish I found it sooner lol! Will post results monday

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So Sorry to hear your struggles in many ways I can relate. Im older than you though I'm 30 years old and got diagnosed 8 months ago. I think I was hypo almost a year before finding out I had hashimotos.

I have gained 1 stone 4 pounds since this began and although I am lucky in that I haven't gained more than that I haven't been able for the life of me to lose a single pound. Like you I eat well, I do yoga everyday and no changes if anything I eat less calories and move more!

Then 6 weeks ago I went gluten free. I have in the past two weeks lost 4 pounds! It's the only thing that's worked for me!!

I'm so hoping you haven't tried this already because I genuinely believe it's started to work! I've also heard paleo and AIP and keto diets have been hugely helpful for people.

I hope you get some luck soon. I'm rooting for ya.

Chloë

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Thank you so much! I have never tried going gluten free. Did you find it difficult? I suppose they make so many alternatives now! I can't wait to try that, I hope I get results like yours; 4 lbs in 2 weeks I'd be so excited!! Well done for persevering and finding what works for you x

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You are most welcome. I did struggle at first and had a couple of set backs but then I got more and more ill so I thought no i must do this properly! After 6 weeks of doing it properly, essentially following a coeliac diet - my results started! X

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Hi. Kpoll97 I believe what you said earlier about the careless of your doctor. Be patient and always take your meds. Just do whatever you feel is right. I do hope you get better. Please keep fighting for this disease!

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