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.

Ah yes, I'd forgotten about the puffy eyes - my upper eye area used to swell up loads overnight when I was hypothyroid.

Mostly the inner bit of my upper eyelid.

It was first flagged up to me when I was 19. My GP at the time (30 years ago and in Australia) did wait around 3 to 6 months before medicating me, for the reason you mentioned life long medication. It didn't improve, so I started the medication. I have had to increase the dose over the years. It is no drama to me. At the time I began I was taking the pill, so just another tablet. I have it checked via bloods. The only thing I would say if you are TTC tell your dr in advance, as you will probably need more monitoring during that time. My local NHS hospital had a programme for women with endrocrine disorders ie Hypo/Hyper thyroidism, Diabetes etc meaning we were all monitored slightly more than the average person. It is an easy disease to manage IMO, compared to skin conditions, diabetes etc. Best of luck

Yes! Mine looks burnt on the lower part of my eye, next to my nose too though. After that happens, my eyes swell up too.

@WarriorN I didn’t know half of what you have written and I have crohns as well. I take a large dose of Levo and it just says… wait half an hour before you take anything else?
Your information may explain a few issues I am having, malabsorption etc.

it’s just from running into issues myself and then reading around the subject.

worth reading this: https://www.btf-thyroid.org/diets-and-supplements-for-thyroid-disorders

I’ve also found that a high fibre breakfast causes issues absorbing thyroxine for me so I try to take it an hour or more before with a large glass of water. grapefruit if eaten daily causes issues too. (Liver enzymes - I made that mistake once!.) my gp told me about her relative who took thyroxine with coffee - caffeine interferes too. When she stopped she needed less thyroxine.

if you are well replaced with thyroxine digestion should be better. And everyone is different. I seem to be having more issues thanks to menopause. I also have always seemed to need more thyroxine than others I know.

The BTF pages don’t tell you to take extra vits as they aren’t allowed to, and make the point that you may not need them, but they do note that those things can be lower in ppl with hypothyroidism.

it’s probably worth getting a test for these things if you can at gp to be sure; they started testing me as I began to get a lot of tingling and numbness in my hands and feet. Loss of taste and lots of tongue ulcers.

Health unlocked tell you to take extra b vits, and aim for levels in upper ranges. I found by accident that I really do seem to need extra, despite a really good diet of vegetables and pulses and also including fish, meat and dairy (though I don’t eat much flour which has folic acid added to it.)

I always used to just take berrocca . Some versions started adding calcium which is why I moved away as I’d glug it in the morning. It usually has some zinc too. I ran into issues when I stopped taking anything for a while. The together health actually isn’t as high a dose of b12 and folate as berrocca but I’m sometimes taking a bit extra separately (awaiting a re test)

ferroglobin is good too, just make sure it’s 4 hours after the thyroxine.

oh and hrt - I was briefly on testosterone and needed to drop my thyroxine then.

My old Endo said reflux can be a sign on low stomach acid - weird I know.
he recommended taking betaine pepsin before all meals with protein.

and he advised me to wait an hour after taking my thyroid meds before eating breakfast or drinking coffee.

as my symptoms and levels of meds required, suggested an absorption issue.

That’s helpful to know. No one has ever told me to take it on an empty stomach or about interactions with iron or ST Johns Wort .

Sensible advice from him

Thyroxine absorption is affected by taking it with food or caffeine

However what I have been told is it doesn’t matter as long as you always do the same - as any lack of absorption will show up in your blood tests and they will adjust your dose to compensate.

heard today my b12 and folate are now great (id been taking a vegan sublingual - and I do seem to be much more with it, tingling and nerve pain has pretty much totally gone) but tsh still a bit high for me. My gp is really helpful though and I know she’ll let me just take an extra couple of 25s a week to tweak it. If anything I’ve resisted taking as much as they’ve offered in the past as I don’t feel well if my Tsh is too low. But I do know others who do need it low (eg 0.3.) NB tingling can also occur with hypothyroidism- I never used to get that though when I was younger.

the benefit of taking it at least an hour before food is that you know you’re getting a really consistent level which makes making tweaks easier. This can be important if you’re taking other medications eg oral oestrogen of any sort (I take tamoxifen and needed more) or other medications. Ashwanga can also mess with it unfortunately. I also take it if I wake up at 3 am which is quite often! I do go back to sleep more quickly (placebo effect!)

of course if you start making changes to how you take it you could end up on too much so it’s wise to discuss with Gp first and get a test 6-8 weeks after making a change.

yes consistency is the main thing tbh. I think pre kids I could be consistent but post kids I couldn’t! And I have had to be more strict about how I take it.

I take mine right before bed which seems to work pretty well.

id love to do that. But have an evening cheese habit

Hi, do you buy it privately? I have looked into how to do this but can't find out.

@Blogswife Hi, I am in the same situation but don't know how to find a private doctor who will listen. How did you find yours?

@oneoneone Hi, I am in a position where Levo just isnt working for me and I want to try Armour, but don't know where to start. Do you get yours privately? Hope you dont mind me asking, I'm desperate at this point!

For anyone on here who hasn't already been on there, the thyroid UK website is really good. It explains all about TSH, T4 and T3 tests, and also the tests to determine whether it's autoimmune based.

It also goes into detail about the different kinds of thyroid disease, how they effect you etc.

There are also lists of providers if you are interested in using private blood testing companies. I've done this regularly for various reasons (and it was a private test that actually told me I had a problem with my thyroid in the first place, then a subsequent one that showed I had the antibodies confirming I have Hashimoto's disease).

It talks about medication, and there is a section about liothyronine (T3 medication), which is what I'm on (levothyroxine didn't work for me, I just felt like a zombie). Probably best just to focus on levothyroxine for now, you don't want to over complicate matters and hopefully you'll do just fine on it. If you don't (and it can take a long time to get to the right dose) then just know that there are other options out there.

There is also a link on there to the thyroid section of the Health Unlocked forum. It is full of some very knowledgeable people, who pretty much saved my life I think in relation to my thyroid disease. You need to understand that the majority of GPs have very limited knowledge of thyroid disease - for example, they will test TSH alone and tell you that you are 'over medicated' without testing your T4 and T3. The T3 test is vital, because T3 is the active hormone, so they really can't get a full picture of your thyroid without it. Also, most endocrinologists are diabetes experts rather than thyroid experts, and some can be as poor as the GPs are. I've experienced that myself, and sadly the Health Unlocked forum is full of people who've had the same.

Just picking up a few things the op has said - heavy bleeding can absolutely be caused by underactive thyroid. I had to have an ablation because of my bleeding, and if I remember rightly it was in between seeing gynaecology and having the op that I got my thyroid results.

Being autoimmune, there is evidence out there that shows going strictly gluten free can help. Ideally you should have a coeliac blood test first (because you need to be eating gluten for 6 weeks for at least 2 males a day) to rule that out, as it's very common to have more than one autoimmune disease and coeliac disease and Hashimoto's go hand in hand.

Really important as other people have mentioned to make sure your vitamins and iron are in a good place. And that doesn't mean just in the range, it means optimally in range, so generally in the top quarter of the range. Specifically you want to focus on vitamin B12, vitamin D, folate and ferritin. I had very low ferritin early on in my journey, and was losing hair. Underactive thyroid can also be a cause of this, so it could have been either, but I managed to raise my ferritin and the hair loss stopped.

I put on a lot of weight, and unfortunately, I guess because thyroxine didn't work for me, I didn't start to be able to lose it until I added T3 medication into the mix.

I cannot emphasis enough to go on the Health Unlocked forum to anyone on here struggling with their thyroid. I've learnt so much on there, including how to advocate for myself. It gave me hope when I felt like death on thyroxine, and the tools I needed to learn about other medications. I actually get my T3 prescribed on the NHS, which took a huge fight and a number of years, but was worth persevering!

Good luck with your endo appointment on Wednesday. If it goes poorly, assume they're a diabetes expert rather than thyroid! If that's the case, you can ask for recommendations over on Health Unlocked and ask to be referred elsewhere. My first endocrinologist was awful, I now go to one in a different county. Our first meeting wasn't brilliant, in fact I complained to PALS about him! However, we came to an understanding, he acknowledges that I've researched things properly, and have done all my medication changing and raising doses slowly and steadily. Whilst we tend to argue a bit during appointments, the letters he writes to the GP are actually very supportive, so I'll let him off!

Do you mind posting links to these sites please?

Of course!

https://thyroiduk.org/

And here is the link to the thyroid section of the Health Unlocked forum:

https://healthunlocked.com/thyroiduk

Yes, I get it privately. It was initially prescribed by a private endocrinologist, but I now only see him every three years or so. My GP does my testing and prescribing.

Whereabouts in the country are you? I referred another poster to my endo and she found him extremely helpful. If you're in or near London, send me a pm and I'll send details.

Seaside Susie was great on health unlocked - be aware some people there insist you will feel best with a really low tsh. Some do, some don’t and feel better around 0.8-1. Susie used to make that point at a time when no one else was. She sadly died last year but her posts can still be read

Thank you to everyone who has posted- it looks like this has been helpful to lots of people!

Hi OP,
I hope you're OK. I'm just checking back in with the thread and am excited to see so much great advice has appeared since I last posted. I started taking my daily levothyroxine and although it's only been a few weeks, I think I am already benefiting. I was having really quite severe muscle and joint ache in the mornings, and dryness everywhere; eyes, skin, hair, nails, vocal cords, vagina. I assumed it was perimenopausal so requested topical estrogen cream to treat the vaginal dryness, but since taking the levothyroxine, I am pretty sure my general dryness is abating somewhat. My most recent period was also quite 'normal', after years of 'bleeding out' and passing clots the size of my palm. I've also noticed a subtle metabolic change: I've absolutely pigged out in the last fortnight as there's been a cluster of special occasions and celebrations. Normally, I would look at a carb, and it would jump straight off the plate onto my hips, without fail. Since I started the medication, I haven't gained one gram, despite quite a few proper indulgences. But it might be too early to tell and it's all placebo.

That sounds really promising though!! Thanks so much for posting- I’m really nervous in case I’m one of the ones it doesn’t work well for… but there has been so much great advice on this thread, I’ll know what to do if it doesn’t.