Hypothyroidism - what are your best cures and tips?

[FeedtheTree]

Hi
Just wondered if people with hypothyroid would be happy to discuss what works for them. I've heard so many horror stories about levothyroxine, and am also completely confused by the whole T3 T4 debate and what makes things worse.
I was thinking of just trying NDT instead of prescribed levothyroxine. But that's based on reading so much online stuff, most of it from USA, that I can no longer work out what to believe and what to try.

My main symptoms are:
excessive tiredness
weight gain that can't be shifted (2 stone)
depression
brittle nails
straw hair
swollen face and puffy neck

Really I'm just trying to gather some reliable first hand info on what works, what doesn't, (either prescribed or alternative medicine - I'll try anything!) which websites are trustworthy, which endocrinologists in UK are good.

I’ve had it all my life and taken thyroxine since I was 5 at high levels. My thyroid is so rubbish within 3 days of not taking it (forgot to renew prescription a few times) it gets quite scary. To give details of the freaky behaviour it has led to (not taking it that is) would be far too outing so just trust me when I say it’s freaky and weird.

In my opinion you’ll be risking your wellbeing to ignore Drs opinion on this and try to manage it holistically. If you are female and get pregnant you’ll also be risking your child’s brain development.

After plus 30 years on it I’ve only had positive effects. The scary comes when off it

Hi
Thanks so much for your reply Karigan. I'm past getting pregnant (well, not quite, technically, but have two teenage DC and no plans for more) so that's not an issue, but I take your point.
Are you on levothyroxine? Does it work for you?

Yes I am and yes it does. Always has worked for me. Whatever you choose I hope you feel better soon.

After starting levothyroxine about 10 years ago, my life was transformed from being a depressed zombie, to (with additional help) 2 successful pregnancies and now chilled out (although sleep deprived from new born!) Different person.

That's lovely news, Ratbagratty! Congratulations.

I'm really happy to hear two positive reports of levothyroxine.

Did it help either of you lose the weight? I'm very frustrated by lumbering around getting bigger and bigger despite weight training and exercise and cutting out sugar and alcohol.

What horror stories re levothyroxine ? If your thyroid gland is making insufficient hormone surely you need to replace it.

@yikesanotherbooboo, I've read (online, so not sure how reliable it all is, and tbh I don't really understand it at all - science is not my strong point) that levothyroxine provides extra T4 which converts itself into T3 which is what your body needs to heal from hypothyroid.

But there's something called Reverse T3 (RT3) which is when T4 converts (I think) to an immobile, useless version of T3. If you have this version Levothyroxine can actually make your condition worse. People say that Natural Dessicated Thyroid has T3 in it directly so this can't happen, and so you're more likely to be cured, but it's rarely available on NHS, which tends to automatically prescribe Levothyroxine. I'm terrified of getting even worse as I'm pretty debilitated by it already. That's why I thought I'd ask around.

I don't even know what T3 nd T4 are or whether those comments are just made by people trying to flog useless supplements at inflated prices to ill people. I'm so confused by it all.

@Ratbagratty 'depressed zombie' pretty much sums me up. I have been fighting this for three years now and I'm incredibly tired of it. Levothyroxine cured you of that feeling? Did you get clear headed? Get your energy back? Stop losing your hair?

I’ve been on thyroxine for nearly 20 years. I’m also a doctor, and have never come across anyone having problems with it.
If you don’t take it, and you have significant hypothyroidism, you will eventually suffer heart failure and death. It’s a no brainer.

@Babdoc thank you. That's pretty direct. My granny had it and died very young of heart failure. I don't want that to happen.

I'm still quite forgetful especially if I forget even one dose and the 5th day after missing a dose I'm a semi zombie that day. I didn't lose hair too badly but I did get sweats that drenched tops even in winter and that cleared up pretty much the week I started taking it. I have managed to lose weight but I was given metformin to help with this and conceiving . A dietician suggested i followv the British heart foundation guide to healthy eating instead of dieting and with the metformin it worked and I am now just above my target weight (having had 2 pregnancies too).

I think the levothyroxine gave me enough lift to be able to start being myself again.

I have been taking Levothyroxine for a few years now & I'm currently taking 175mcg daily. My DS2 has been taking Levothyroxine since the age of 2 (he's 13 now) which is now up to 50mcg daily.
My DM has been taking it for over 30 years too.

Levothyroxine works fine for about 85% of people. The other 15% includes people with a gene mutation who will always need T3 and people whose GPS are conservative in treating them, resulting in them staying unwell. I'm in the latter category and have treated myself with natural Dessicated Thyroid Extract for the last three years. Now fit abd well, weight in normal range etc etc.

OP, do you have any test results to share with us?

If you don't take it, you will die. Are you stupid?

Been taking for nearly 5 years. Was critical to my getting pregnant last year. Has made my energy levels in the evening noticeably better. I love it! But you have to do some symptom-spotting to make sure you're taking enough as I understand from my doctor people tend to gradually need more over time, and therefore the dose that was good two years ago may no longer be enough.

You don’t want to believe everything you read online! Your thyroid isn’t making sufficient thyroxine. That leads to,symptoms of hypothyroidism. The only effective treatment is to replace the missing thyroid hormone.

I take 250mcg daily. Have done for about 24 years. It works. Some people don’t believe it works but there is no evidence base to support that. Usually people who think it isn’t working have other issues such as depression.
It’s cumulative and takes a little while to build up in your system.