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.

im really sorry, I would stop that immediately .

ashwanga can cause issues with it. I could go into more detail but don’t have time.

i wouldn’t supplement iodine beyond the RDA from a multi vitamin.

you don’t actually need it as much if on thyroxine.

the hardest thing about recovering from hypothyroidism is that it takes a bloody long time. Honestly it’s a fucking arse sometimes. Get the next test booked in as other posters.

and sometimes you do need to titrate slowly as your heart could go a bit bonkers if you go up too much too quickly. (Cortisol raised, adrenaline etc)

the earliest I’d ever do a blood test is 6 weeks, only if I’ve adjusted slightly. 8 is better. Ideally 3 months.

Because: it takes at least 6 weeks to stabilise the medication (Levothyroxine, t4) in your blood as it has a very long half life. T3 has has a very short half life. A few hours.

and then, once you’re stabilised at a good level, it can take another 6 weeks or longer for your system to overhaul itself- eg new blood cells that aren’t wonky (yes I did actually google that and this is what came back:…)

this is why you need good stores of b12 and folate also ferritin (iron). To support this. But then some people also have absorption issues and/OR autoimmune b12 issues as well.

Plus there are some who need folate rather than folic acid (the latter is added to flour and cereals in this county. Most people can convert it from folic acid if to folate. Pure Folate is what’s in leafy greens and chick peas etc. Which is why we must eat our greens! And a good b complex with decent b12 and folate in is helpful.)

of course women who are menstruating have a hard time with keeping iron up.

apologies for the very unscientific google but you can go and find all this information out very easily. GPs wont cover it.

ashwanga

https://www.health.com/medications-not-to-mix-with-ashwagandha-8758036

@ProfessorMacandCheese thank you so much for giving me the push I needed to take responsibility for my own thyroid tests and management. I suppose I was thinking once I lost the weight that my thyroid levels and cholesterol would even out - the reverse is true!
I have, today, ordered The Ultimate Thyroid Test from One Day Tests @£79. I found the test as one of the companies listed on Thyroid. U.K.
I’ve been doing lots of reading on Health Unlinited - a great source. I’ve also found a consultant to ask for a referral to - if needed. I can’t find anyone I’d be happy to go to where I live as I want an endocrinologist who specialises in thyroid not diabetes.
Thanks to everyone on this thread and to the OP for starting it.

SO helpful thank you! My B12 was good (off the charts!) because I used to use a spray that had a very high amount in as I'm vegetarian. I've taken a break from that as I think I overdid it. Same with folate. I might go back on the multivitamins again though. Iron was pretty low (under 20) but I have been taking ferrous sulphate for a couple months so should've got that a bit higher by now.

I LOVE chickpeas and eat them all the time but other than that I'm not that healthy. I just cut down on added sugar massively though which is big for me. That probably doesn't help my mood (I feel really low atm) but hopefully in the long run I'll feel much better. Other than that it's just the lack of energy and backache that is making me feel so rubbish. I suppose I have to just wait it out. Many thanks for all the info it's so useful!

Well, after the brief honeymoon period where I felt like a new woman, my symptoms are just as bad as ever. I’m doing everything recommended (and I stopped taking the drops @WarriorN ), but the headaches are almost daily now, and my shoulder is frozen.

Arrrrgggghhhh! It’s doing my head in!!

I’ve been looking for this thread and couldn’t find it. I have an appointment to speak to a doctor today and need advice. I was asked to reduce my thyroxine levels a few months ago and since then have been feeling increasingly awful. Weight gain, dry skin and itchy skin. Sore swollen breasts, bloated stomach. I can hardly wear a bra it’s so painful. I feel like I’m retaining a lot of water. I don’t feel cold particularly but I’ve also been feeling more depressed than normal.

I told the doctor all this and she has referred me for an ultrasound in case I have ovarian cancer . I got an appointment on Xmas eve so have had to cancel that as I can’t attend. I’m absolutely sure that these symptoms are related to thyroid function. The doctor hasn’t mentioned my blood results which she did at the same time as the referral, but I they must have been normal. I asked her if they were testing T3 at the time and she said they were ,but now I’m wondering if she actually had a clue .

What do I need to ask her today? Should I ask for a referral to an endocrinologist? I can’t go on feeling so awful so today I started taking a higher dose again, but I’m worrried about bone loss etc.

I have been on thyroxine for over thirty years but been told my blood results show I’m on too much Levo a few times over the last ten years. Other times the results are fine. I’m in despair.

Blood sugar has gone up and so has my blood pressure in the last year. I feel a mess.

I think rhe most helpful thing would be for you to ask for a reint out of your thyroid bloods and then ask reception how to download the NHS App.

First, get the cancer screening done. That is bybfar the mosr important thing and it's a great shame you cancelled your apppintment for this rather although if you had flights booked I guess it was unavoidable.

Fingers crossed for the all clear and if so, then make an appointment with an endo. Meanwhile, if your TSH has been under 2 leave your levo alone.

Thank the GP for thinking laterally and referring you. Many don't.

To be honest I hadn’t thought there was much chance it would be cancer. Maybe I’m being naive.

Are you taking vit D to help you absorb calcium for your bones?

I’m using a vit D spray. I’ll ask for a print out but need to fill in a form at the GP to get it.

When is your test?

I booked one for the first week in February.

I have seen a very slight improvement since taking the vit D alongside the Levothyroxine, so perhaps as that gets into my system properly, it will help. I don’t think I absorb vitamins and minerals very well.

I was diagnosed with it maybe 5 years ago amd although I still get tired I feel so much better. The key thing that changed for me was when I stopped pissing around forgetting to take the thyroxine, now that I take it every day without fail my levels are the best they've been in years.

Im also B12 deficient so the injection for that every 12 weeks is also a lifesaver.

Another thing is walking a lot. Bonus of that is Ive lost nearly 2 stone!

are you sleeping ok?

your system has a lot going on all at once - as I explained, it can take time for all the cells and tissues to renew and recover. I used to bounce back more quickly who I was younger and had other hormones and the capacity to sleep solidly!

I raised by only a small amount back in mid October, and again by just one 25 tablet a few weeks ago and I think last week I started to notice a number of things improving. Most of that would have been the raise back in October

yes being really consistent with taking it has helped me. It is fine to take it consistently with food but I found that when I had kids my breakfast would be delayed or change to something different so really it wasn’t a true consistency

taking it at least an hour before breakfast (longer if it’s at 3-5 am wake up) is the only way I’ve been able to do this.

evenings are too inconsistent too

are you in perimenopause?

Have your packets been changed to different brands? I am almost certain that a muddled batch earlier this year swung me into hyper. Then they reduced my dose (I begged them as I felt awful and tsh was 0.2). And then a few months later on the usual brand I’m predictably back to being hypo. I’ve again insisted that they stick to the same brand.

the thing is it could also be hormones which is why I’m not certain - I’m on tamoxifen and had a bloody nightmare getting the levels right. And my hormones have been irregular due to either the tamoxifen or peri. I needed much less thyroxine when I was on utrogetstan and testosterone as part of my hrt. (Only 100. I’m now on 125 plus two days of 150, after going back to 100x3 days a week and 125 4 days in the spring. Tamoxifen can increase how much you need.)

it wouldnt be an issue if quality of life was not a significant challenge at times (which may partly be the tamoxifen. Even my gp said last week it’s shit.)

I sleep like a log! I have felt a little bit better over the past few days, but my eyes look swollen and burnt again. I’ll take that over feeling knackered all the time though!

As I said before it can Sometimes take a while to feel better, it depends how bad you were and for how long and how much thyroxine you’ve been given or upped by.

the gp should assess both symptoms and bloods but usually around tsh 1, or slight below, eg 0.8, is a good number. If you’re still more like 2.5 and not feeling great you could adjust slightly with a couple of extra 25s a week for example.

try to get blood tests done in the morning around the same time each time - I usually get the between 9 and 9:30. Don’t take that days thyroxine till afterwards. Stop anything with biotin(b7 vitamin) in it a week before the test as it can affect the results.

I haven't rtft yet but just want to share something with you. Many years ago I was about 1 year into taking thyroxine and the dose was being increased very gradually with tests every 12 weeks or so, and my thyroid tests were still reading very high, hence the steady increase. I'm not in UK so the system may differ. I was recommended reflexology by a colleague for another health issue. I had a couple of sessions and when I went back for my next bloods the Dr was concerned there was a mistake. The levels (Can't remember which one) had gone from being quite underactive to just a teeny bit over the optimum level into overactive levels. He immediately started to reduce my thyroxine. He said it should take months if not years for such a rapid change but when I mentioned reflexology he agreed he had heard this before and couldn't explain it. I'm very stable now but if I feel a bad patch coming on I go for a few sessions. I'm still on thyroxine but a low dose and stable for years now.

Gluten free diet helped me. I only had a very borderline mild case, but it resolved with the gluten-free diet. I have been going on 10 years without any medication. The doctor had originally prescribed to me quite a strong dose of levothyroxine.

You will die if you don’t take the medication! Simple as that! Also long term NOT taking the meds when they were needed also ends up with other serious diseases such as Addisons. I was misdiagnosed for so many years I have ended up with hashimotos and Addisons because the hashimotos wasn’t diagnosed when I was younger and I’ve nearly died multiple times until I got on the right level of meds and took it seriously

Coeliac disease is lined with hashimotos

Sleeping like a log is a MAJOR warning sign!! Please go and get your cortisol levels checked!! This is a serious warning sign that you have already got adrenal fatigue/Addisons as sleeping like the dead is one of the first major symptoms of it and once you have one condition like hashimotos you often end up with at least another condition too

Oh dear.