I had my last thyroid bloods were done on February 14th 2022 and were TSH 0.03(0.35-5.50) FT4 21.4(10.0-20.0). I have dropped 6kgs or 13.2lbs in weight, so nearly a stone but because the nurse was too lazy to actually weigh me this wasn't picked up for another month and I have gone from a size 14 to a size 8 in clothes size,my question is how quickly will I regain all that weight and probably end up being overweight or obese according to the NHS as they appear to be obsessed with obesity these days and how do I convince the woefully unknowledgeable doctors within the NHS to increase my dosage from 100mcg every second day(50mcg per day) to what it should be I.e. 1.6mcg per kilo of weight which in my case is 88mcg,so nearest is 87.5mcg as my weight is currently 55kg and once the weight starts to pile back on again, it will be impossible to get it back off unless I go back to being overmedicated again. What are other people's experience of being through this scenario, any advice or guidance very welcome.
How long between huge weight loss till huge wei... - Thyroid UK
How long between huge weight loss till huge weight gain?
Hi Sobs1962; how much time has passed between you dropping from size 14 to 8? That is a drastic reduction!
Probably 3 months, but endo was happy for me to continue taking 100mcg as long as my TSH wasn't undetectable , however most of my weight loss was between 1st January and middle of February after I had a TIA(minor stroke )on January 1st 2022 but because nurse,was too lazy to weigh me mid February, I carried on losing weight and it's on my record that I weighed 60kg in February which was more like 53 or 54kg. I really don't want to pile on weight again as it makes me feel almost suicidal and I've no doubt that they would have a go at me about it even if it's not my fault and is being caused by my thyroid. It seems we just cannot win these days with the NHS.
This post begs a lot of questions. Are you sure you were over-medicated? Being over-medicated doesn't automatically mean you lose weight.
And, why do you think you will put it all back on again?
This business of being dosed by weight is only a very rough guide, not an exact science, because it depends on so many variables, like how well you absorb in the gut, how well you convert, and how well you absorb at a cellular level. Just because you weigh 55 Kg now, doesn't automatically mean that your dose should be 88 mcg. That's just a starting point, to be adjusted according to need. 
I have no idea why I've lost so much weight and so quickly but of course when my results came back in February with TSH suppressed and ft4 over top of range, they've automatically jumped straight on it being my thyroid and have made no attempt to do any other tests, knowing my luck it'll turn out to ne cancer
Sorry, pressed send, it'll turn out be cancer and too late to treat,knowing my luck However, I've been on 100mcg every other day now for for over 4 weeks and my weight has stabilised, so the doctor said if we cut your dose and you stop losing weight, it's obviously your thyroid and being overmedicated and we need to cut your Levo dose drastically so we can see what's going on. Like I say,because my weight has remained stable, they've no intention of doing any more bloods until end of June/beginning of July. As far as,putting the weight back on is concerned, surely it's inevitable as,my metabolism will go down to snails pace again and the weight will go back on.
Yes, they woud have, because they don't know that you're only over-medicated if your FT3 is over-range, and they didn't even test that. Could have been that having your FT4 over-range meant that your FT3 was just in the right place to lose the hypo-weight. It wouldn't have been the T4 or TSH that made you lose it.
Well as they refuse to test ft3, we'll never know,I asked why the NHS refuse to test it and he said that it doesn't tell them anything useful and only TSH and ft4 gives them the information that they need to manage a person's thyroid condition. Looks like I'll have to do a monitor my health blood test and hope that being on clopidigrel doesn't mean that I won't be able to stop bleeding however I know,for a fact that a diagnosis of hyperthyroidism cannot be made without testing ft3,so I'll just have to hope it's not something as serious as cancer as,by end of June it could have spread to the point of being terminal.
Well, that just goes to show how ignorant they are! It's not that the FT3 doesn't tell them anything useful, it's that they don't understand what it's telling them. Your doctor does sound very ignorant. Don't let him reduce your levo by too much! Only 25 mcg every six weeks.
Why would you think you have cancer? I knew someone who had cancer and put weight on!
I'm currently on 100mcg every second day so 50mcg ,so apart from stopping it completely or reducing to 25mcg it can't really get much lower,but I'm still worried about severe constipation and major weight gain on 50mcg,the longer I'm on this dose the more underactive my thyroid will become, but currently in the process of changing GP practice, so hopefully will get a more knowledgeable and sympathetic doctor after changing.
the longer I'm on this dose the more underactive my thyroid will become,
No, that's not true. Levo doesn't make your thyroid less under-active or stop it becoming more under-active. It's not a treatment for the thyroid, it has nothing to do with the thyroid itself. It's just replacing the hormone the thyroid can no-longer make enough of.
Obviously you are under-medicated, and your doctor is an idiot, and it could do a lot of harm to your heart and other organs. But, it won't affect your thyroid.
Weight lose can be a hypo symptom. Especially if your nutrients are deficient. But, do you have Hashi's? I can't remember.
Yes, confirmed in 2007 when antibodies were over 1000 but concerned about my dosage of levo especially if it has the potential to cause my heart or other organs harm, but it seems to me that the NHS aren't the slightest bit concerned about those with thyroid disease as they think it's a simple fix, sooner I change doctors the better.
Yes, you're right about the NHS. But it isn't just in the UK that there's a problem with thyroid treatment. It's a universal problem.
Wouldn't you think that such a common problem, especially in women would be much better researched and treated, suppose the pandemic has caused untold damage to healthcare systems around the world.
Even before the pandemic thyroid was the Cinderella of all health systems. But, the pandemic has made it worse because of lack of availability of blood tests.
I just wish I could afford to have private health insurance and it might mean my health gets taken much more seriously than it ever will under the NHS. I suppose I just have to accept that I'm always going to feel ill underthe NHS and just learn to make the most out of the days when I don't feel shattered and my brain doesn't work, which has been considerably worse since my TIA at the beginning of the year along with my depression and anxiety.
Well, I sincerely doubt that. Because all doctors have the same education - or lack of it!
And I certainly wouldn't accept that I'm always going to feel ill! I decided many years ago that if doctors couldn't be bothered to learn about my disease and treat me properly, I would do it myself. And that's what I've done. And I'm still learning new things every day. And, I'm feeling better and better. It's a long, slow process, but no way will I accept being a vegetable for anybody. Get angry! Start fighting! And start looking after yourself and stop relying on the NHS now you know that they're not going to do anything for you.
I cannot stress enough the value of optimal nutrients. Not just vit D, vit B12, folate, ferritin, they're just for starters. Check out other things: zinc, copper, selenium, vit E, vit A, the other B vits, etc. Try things like CBD oil, elderberry and black cumin. They might not work, but there's always a chance that they will. And, if you never try them, you'll never know.
I was prepared to fight for myself before my stroke, but now my mental health is so bad,I have neither the energy nor motivation to fight any more I know it's very sad but tragically my depression is treatment resistant, which means no antidepressant is going to make it any better and I don't think there's anything natural that could help, so I'm just stuck between a rock and a hard place and there's nothing I can do about it, nor do I believe that I'm worth the effort and honestly, I've just given up because life is almost impossible to get through when you hate yourself as much as I do.
it seems to me like you are worrying unnecessarily. 100mcg may have led to weight loss if it was too much (and if i remember correctly , you had other symptoms that could also indicate overmedication) .. so eventually you agreed to reduce quite a lot to 50mcg, to rule out overmedication as cause for the weight loss , but you were very worried a lower dose would lead to constipation ... has it led to constipation ?
if the lower dose has stabilised the weight loss, then that is good and it does tend to confirm the idea that overmedication was the problem.
There is no reason to assume 50mcg /day is going to be 'too little' unless it proves to be so, (by having new symptoms of constipation/ feeling cold/ slow heart rate etc or blood results showing that TSH is too high or T4/T3 too low ).
The dose by weight thing is really not much use as a guide ... some need more than 1.6mcg/kg ,and some need less ....so don't jump to conclusions here.
If 50mcg is really not enough, then over time you will see symptoms of hypothyroidism returning and those may include weight gain .... but remember .....if you are currently very underweight. then you would expect to put your normal weight back on , on the correct dose of Levo... So in your situation ,'weight gain' in itself is NOT an indication your dose is too low unless it becomes 'too much weight gain'.
if / when it turns out that 50mcg is not enough, then 87.5 mcg would obviously be the sensible next dose to try ..... but i think you are jumping the gun in assuming you will be under dosed if you remain on 50mcg.
Assuming you feel better now that you did on 100mcg .... try to stop worrying , stay on 50 mcg until you get back to the weight you want to be , and then re-asses symptoms and bloods to decide if 87.5mcg is needed or not .
Thanks for that, I do worry a lot about anything and everything, because my mental health is so bad. So far,I've not had constipation but as it's been a problem for me for over 50 years, I just expect it to happen, along with becoming overweight and fat as my thyroid goes back to being majorly underactive again. I always have to plan what I'll do in any event and my life is full of what ifs.I just wish I could live my life one day at a time, I'm sure I'd be so much less stressed, if I could.
yes it's a tough one to figure out, this 'living in the present' malarkey .
Not to be too flippant .... but i find a 'near death experience' or a cancer diagnosis is very good at helping us figure out how to 'just live in the moment' .
Obviously If you can figure it out before either of these happen to you .. so much the better.
I once owned two empty properties neither of which had any buildings insurance... and both were at extreme risk of catching fire ,and they had no fire breaks in them and loads of bare timber everywhere , in a neighbourhood with far too many arsonists with nothing to better to do .... i was so terrified of what might happen that i drove myself and everybody else absolutely nuts with worrying and panicking about anything and everything ... in the end my brain just had enough and said "sod it.... even if one burns down ... you'll still have a building plot and the other one .. there's no way they'll both burn down on one night " . and i fell asleep properly for the first time in weeks .
Somehow , facing up to , and accepting, the 'worst' possibility ,allowed me to let it go.. and stop stressing about things that hadn't happened.
You're definitely right about that, just have to keep going and try to get through each day.
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