Hypothyroidism- please share what has helped you.

[NormasArse]

Hi, I’ve just been diagnosed with an under active thyroid, but I’m wavering about taking thyroxine because it’s a lifelong thing.

I do feel crappy all of the time. I sleep more than I’m awake, and after a day at work, I’m often too tired to drive straight away, and need a nap in the car first.

My neck feels constricted and I have all over body pain. I’m also concerned about the rise in my cholesterol.

When I’m not working, I try to walk and swim every day (some days are a write off though).

Alcohol is a complete no now- it makes me really tired, and often sick. That’s not a problem though- I can live without it easily- it’s just showing that something has shifted within me.

My concern is- what if it were suddenly become unavailable, or we moved away from the NHS?

Is there a natural way to get my thyroid to work properly again? Or at least something that means my dose would be minimal?

TIA.

What hrt were you on?

100 levo is a high dose so it may make a difference

you may get a bit jittery in a week or so

Oestrogen gel and progesterone capsules. I stopped having periods six years ago, but kept bleeding on it, so I’ve sacked it off. I don’t want to be on lots of medication.

It's always a bad idea to make any other chances at the same time as starting a new medication or changing a dose. Making another big, systemic change is going to make it almost impossible to sort out cause/effect and efficacy. If you've been on HRT for some time, it's not going to harm you to stay on for another six weeks while you get settled on levo. |f it's not too late, I'd go back on it for the moment. I'm very surprised that your doctor okayed that.

Adding that as both medications are hormone replacement related in some way, it's a doubly bad idea. Different than if you came off of something not related to hormones or endocrine issues.

Sorry to scold.

It’s tricky as I do know the bleeding was challenging. At the same time I agree that’s a big change which could upset your system.

I needed less thyroxine when I was on the utrogestan continuously

you may also get some meno symptoms as a result of coming off - everyone is different though

I think the Dr ok’d it because I’ve been bleeding so much on it. I went for a camera/biopsy last week, and my womb lining was very thick. I was on it because I’d been having real feelings of doom- to the point that it was affecting my daily life/digestion etc… but it has become apparent that those symptoms were probably caused by the autoimmune disease/thyroid issues, rather than the menopause.

I’m aware that GPs don’t have all the answers though, so on most things, I’m proceeding with caution!

I have period pains and bleeding, but I think that’s usual.

I’ve just walked down the High Street and it’s like my senses have been switched on. Everything is more vivid!

It sounds like you’ve made an informed choice and I concur that the bleeding is a pain.

fwiw I had to come off hrt due to BC and actually I do think half my symptoms were due to not properly being correctly medicated with thyroxine as well as not following good lifestyle approaches (actually slightly too much thyroxine for a while) .

I think it’s a good idea to aim for tsh 1 for new patients and then work out lifestyle changes after stabilising at that level.

That can take a year of work - which is hard. As we are impatient to feel well. But it’s helpful to have the baseline to then tweak afterwards if you feel you need to. Also perhaps checking Folate, but d, b12 and ferritin. My tsh was 1.3 last week (after being 3 and struggling) and I’m just upping by one extra 25 per week plus lots of stress tackling things and my usual exercise and then taking a view.

coming back to the whole absorption/ digestion discussion; I do find quality protein sources that are easy to digest is really helpful, and I think my mother has inadvertently found the same.

i now have / seem to benefit from a mainly plant based diet, lots of nuts, seeds and beans, with diary and fish on top (yogurt, kefir, cheeses) . And I’ve realised it's because I seem to digest all these protein sources well. (Tinned fish eg sardines and salmon, white fish when eating out.) When younger I could eat anything. ( I’ll add plain pea protein shakes and creatine in when resistance training again as whey upsets my stomach.)

I do think it’s important to pay attention to gut health with thyroid as well as menopause as both do seem to affect digestion. I believe some t3 conversion happens in the gut, as well as the liver

another nerdy fact that I learnt recently is that resistance training helps the gut microbiome. In my experience with thyroxine for the last 30 years I’ve always felt better when I’ve been doing exercise that helps strength. Eg yoga, martial arts, and lately weights and rowing. Swimming I think too but that doesn’t help bone density in the same way.

being on too much thyroxine can affect bone density and heart health. It’s important to be aware - I wasn’t. Am getting a dexa scan as I also have some other risk factors and can’t take hrt.

anyway, that’s my hypothyroid plus meno experience/ advice if helpful for anyone. 😁

I don’t think it’s possible for others to understand the difference you feel when well medicated. It is like senses get switched on. I feel like an entirely different person. I am also better with words and multi tasking. Everything is just easier!

Oh and swimming helps reduce thyroid cankles. Especially just using a kick board. Have always found saunas / cold showers at the pool helpful too. One of the Michael Mosely ‘just one things’ from a few years ago on radio 4 was about swimming being good for moving lymph around.

@WarriorN I just wanted to say I have learnt more on this thread than in the two years hence that I was diagnosed with ‘incidental’ thyroid and lymph node cancer. There is no information given. There wasn’t even enough thyroxine in the hospital to send me home with. Thank you for the information and signposting where to find things out :)

I do an Aqua class twice a week, with a swim afterwards, and through the summer I swim in the cove by our caravan. No cankles yet! 🤞

I felt on top of the world last week. The neck pain and pressure on my throat has come back, but not to the extent it was. I think it’ll just take time, judging by the experiences on here.

I definitely have more energy already though. DH said yesterday, “You’re a person again!”

I’m looking into resistance training. I have thought about it for a while, but energy was lacking!

It's amazing. Within 10 days of moving from levothyroxine to Armor I was starting to lose weight and could remember things again. But I really hope you're one of those who is a good converter and is happy on levo as it's a much cheaper, easier lifestyle to maintain!

I think those of us who levo didn't work for forget that for a lot of people it does, and it can be an absolute miracle drug!

I'm certainly envious of those it does work for, because going down the T3 route has been hard work (but worth it) that's for sure.

i wouldn’t until you know your tsh is stable, around 1. But I’d keep active - brisk walking, swimming, yoga etc

And that even if it ends up not working in the long run, it can still work for quite a long time.

I believe the theory is that if you have autoimmune thyroiditis (Hashimoto's), as long as you still have a good portion of your thyroid, levo works pretty well. After many years, some people's thyroids basically burn themselves out, and at that point, you might have trouble converting. I'm pretty sure that's what happened to me as the last time I had an ultrasound, there was basically nothing there. It's also the reason that people who have their thyroid removed or inactivated (due to Graves' disease) often have more trouble converting and will ultimately do better with some T3.

Been on 50mcg for almost a month now and it's not doing anything :( really had high hopes as well. Maybe it'll take a bit more time for me as I had a TSH of 11 and didn't start on levo right away so it probably got even higher. I might not be down to optimum levels yet (or might need a higher dose of levo) I thought my energy levels were slightly better but I dunno. I'm certainly not noticing a huge difference or anything. So disappointing 😔

I’ve been told to reduce my dose by the doctor and since then have gained weight, my skin feels very dry and scaly and my nails have become very brittle. I’m not feeling colder than normal but foggy thinking and water retention are real issues. I can’t wear a bra now without it being really painful and my rings won’t go on. What should I do?

It takes 2 months to make a difference, but your THS is high and your dose is low. Hopefully you’re booked in for another blood test after 8/9 weeks?

@MikeRafone yep I'm supposed to get a blood test after 3 months of starting it but thinking of going private before then just to see what my TSH is at now.

There is not much point in doing a blood test under 2 months, you do need to wait until after 2 months regardless of whether its a private blood test or an NHS test.

Can you contact your gp and get the test booked in? Then do you have the NHS app on your phone, so you can look at your test results a few days afterwards yourself?

I'd probably look at booking the test for the first week in January say between the 4th and the 10th, are you able to do that on their system?

I started taking this whilst I was waiting for the meds. It supposedly helps your body with the medication. I wanted to hit the ground running.

Yeah I can do that I think and I have the app-didn't realise I had to book a test that far in advance but probably not a bad idea-thanks!

im not sure how long ahead you can book a test, but I like to be organised and with Xmas and new year - the doctors will be busy on the 5th

ive just had a blood test today but booked about 3 weeks ago, as it’s the nurse I could easily get in and booked in advance