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.

@Battalicoa why did you stop taking it in the first place and why were you not having an annual blood test. Your GP has some explaining to do I'd say.

I am glad you are feeling better and now on the correct meds.

The whole “once you’re on it you’ll be on it for life” thing is misleading I think.

It’s not taking the medication that makes you need it for life. Taking it doesn’t set off some sort of change in your body that makes you need it forever. It’s just that most people who need it, do need it for life.

I understand that he wants you to see an endocrinologist first, that’s sensible, and yes there is a chance that it’s part of some temporary autoimmune issue so might go away. But it’s much more likely you’ll need it forever. As a pp said many people’s hypothyroidism is autoimmune based (Hashimoto’s) but that doesn’t mean it goes away.

There are supplements that can help and it’s sensible to take those alongside thyroxine. Iodine in particular (or use iodised salt). Low thyroid can also go hand in hand with low iron and vit D so boosting those will help your thyroid.

You’ll need an annual thyroid test (more often in the early stages) so if you do somehow manage to fix your thyroid naturally, you’ll see because your results will start tipping into hyperthyroid and they’ll take you off the meds. But it’s rare.

I don’t recall why I stopped taking it. I know I was raging after the diagnosis earlier this year as although relieved to an extent I was furious that I had lived like this for years. I don’t know if I can look over my notes to see what actually happened?

You can request your notes prior to 2023 be uploaded to the nhs app.

One thing I think is worth bearing in mind after a hypothyroid diagnosis is that it's important to spend a bit of time reading up on it and realising that you might need to advocate for yourself as time goes on. I always insist that in addition to the standard tests, they run my T3 numbers, which they don't do as a matter of course, and which is what finally proved that I wasn't converting properly. Leading up to that, I spent over a year being told I was fine, based solely on TSH and T4.

As @Battalicoa 's situation shows, you may be in a position where you should question a decision. Or, if you're not feeling adequately medicated, stand up for yourself. You're the only person living in your body and medical professionals need to respect that fact. There may be times when how you feel may be more important than some relatively random lab numbers. Glad you're feeling better, by the way.

@minipie I believe it's best practice nowadays for GPs to start patients on a low dose pending endocrine referral. The endo gets the base readings, the dose and how long, any further readings and can run their own tests.

Most people do convert Levo. Those who don't are rare so I can understand why testing T3 is resisted. I have only ever had my T3 tested privately. I convert.

Sometimes the issue is that people do well on levo for a time- I did for 25 years and then gradually stop converting as efficiently. My endo says he sees this frequently. If you go on any forum with people with thyroid issues, it will be mostly populated by people who don't feel they're being treated to optimum levels. Sometimes they're just not being given enough levo, but sometimes it's that their bodies aren't converting. I know when I was getting more levo than my body could convert, I felt awful. That said, I do agree that it should be the first line treatment because it does work for almost everyone in the first instance.

Didn’t know this was best practice - no referral has been mentioned to me. I have private medical insurance so can easily get this sorted. Would an endo referral look at Thyroid and HRT stuff together?

For some of us, (most?) if we stop taking the thyroxine we will eventually slip into a coma (‘myxoedema coma’) and die.

luckily that never happens as it takes several weeks or months to get to that stage if you’ve stopped taking it. And you’d get blue lighted to hospital. My friend is a hospital pharmacist and said they had a man come in in a myxoedema coma a few years ago. Obviously he made a full recovery

I was also told by a gp that she’d admitted a ln elderly woman to hospital with suspected dementia and it turned out to be hypothyroidism. She also recovered

the brain fog associated with it is something else. It’s so important to exercise and fuel appropriately to help cognitive functioning when you’re on thyroxine

I also find I have to stick to solid sleep routines

lastly, swimming is supposed to help move lymph around the body; I’ve always felt swimming helps to reduce the water retention we can get

That sounds miserable - you need to badger your GP for a blood test. Anyone should lose weight eating like that. Swap that low fat yogurt for greek yogurt though, as you need to eat some fat. I'd add a spoon of nut butter rather than all those sugary berries, too.

I was diagnosed sub clinical about 10 years ago and prescribed Levo. Then I stopped taking it - I can’t remember why - either I just stopped asking for a repeat prescription (would GP track and alert this?) or when I started HRT it was stopped?

@Battalicoa in my experience it's completely left up to the patient, the doctors won't chase over blood tests or prescriptions. Kind of crazy when you think what the consequences could be for not regularly taking it!

My dad stopped taking hormone therapy for advanced prostate cancer and they never chased him up about it-in fact they couldn't believe he hadn't been taking it as they had no idea until he told them (this was 20 years ago so things might have changed but I doubt it) I think there was some sort of miscommunication and he didn't realise he was supposed to keep taking it. Things like that must happen a lot.

I'm glad you are feeling a bit better now but 50mcg is quite a low dose so I think see if you can get another blood test to see if the dose is still working as well as it should. Do you know what your TSH was? Mine was 10 and I was also started on 50mcg but wouldn't be surprised if they have to up my dose at some point.

I'm on levothyroxine.

I see it more as a supplement than a drug. It simply replaces what the body no longer produces in sufficient quantities

I lost loads of weight (after gaining it partly due to having an under active thyroid… that’s my story and I’m sticking to it 😅) and it’s the first time ever my levels have been stable in years! Every blood test they were having to change my dose of Levothyroxine, it might have nothing to do with the weight loss but seems to much of a coincidence!

It is, yet I’ve still put on weight. I do think a lot of it is fluid retention though; I’ve never had porridgy legs before, but they are now.

I often feel too nauseous to eat. I’m so tired of feeling like this, but the Dr still hasn’t prescribed anything. I have an appointment next Wednesday, so I’m hopeful for that.

@NormasArse good luck with that-keep us updated!

Will do, and thank you!!

Just another quick question… do any of you suffer burnt looking eyelids and underneath the eyes? Or extreme puffiness? Both of these happen together with me, but randomly. My phone doesn’t recognise my face when it happens!

Just went on Levothyroxine. Simple.

I am on long time Levo (225mg) and have lots of side effects- have auto immune and thyroid cancer so had thyroid removed. Eyes, joints, hair, fingernails, bowel (I could go on)

I would always get as much information as possible regarding medication as coming off it is not straightforward when you have other things going on. Any changes requires multi agreement and hospitals. I don’t blame you for considering options. It’s not always Levo fixes everything.

If you don’t have enough thyroid hormone in your body then you need to replace it by taking thyroid meds.

not to do that is bonkers.

by all means read dr Izabella Wentz and stop the thyroid madness but fgs get some meds inside you now so you can think and function.

then address the underlying cause and fix that.

then you can reduce the meds if it is possible.

but right now you are not functioning well. Which impairs decision making. Get yourself optimal. And then you can do effective research and Make some good well informed decisions.

I have taken thyroid meds since 2009. Sadly my thyroid was pretty dead by then so not possible to fix it. I did try
I take levothyroxine and liothyronine.

I also take low dose naltroxene as my low thyroid is caused by autoimmune hashimotos and having one AI disease predisposes you to more so I like to treat the AI too and this is one way
I also take big ish doses of vitamin d3 plus it’s co factors and selenium
I’m currently feeling good.

dr Izabella wetz is highly regarded. And so is stop the thyroid madness. There are FB groups and forums associated with these where you can learn more about fixing your body and getting optimal. (NHS tends to aim for “normal” and many of us don’t feel great at that level. Optimal I feel much better)

If you haven’t read the thread, I’m waiting for an appointment on Wednesday to see what the endocrinologist suggests.

In the meantime, I’m just asking questions. I wondered whether this was a thing other people recognised, or whether it’s something unrelated.

hypo affects every single part of your body. Dry skin is common.

when recovering we use up more folate, b12, vit d and iron than we normally need as hypothyroidism affects the bone marrow and causes larger blood cells, aka raised MCV (the above is needed to make healthy blood cells)

ive noticed correlations with lower than helpful folate and skin recently.

it really can sometimes take 6 months to fully recover as other blood levels may need to stabilise, and it takes 6 weeks to get thyroxine to the right level. It takes 3 months for blood cells to be fully replenished (if you’ve the right nutrition) and other parts of your body. Menstrual cycle for example.

zinc is also needed to keep hair healthy; you tend to use that up more too.

also - your stomach acid is lower in hypothyroidism. You actually may not absorb food and nutrients as well when hypo, especially if a bit older/ menopausal.

all this is said roughly on the BTF website but they don’t go as far as to say take extra cuts, bar zinc.

also need to remember a lot of vitamins interfere with thyroxine: calcium, zinc, magnesium, iron, vit D must all be taken 4 hours later. Biotin / b7 which is in most multivitamins and b complexes affects thyroid blood tests so much be stopped about a week before a test.

I take: b complex and vit d mouth spray in the morning.

Low dose multi vit at lunch time (it doesn’t have zinc in it) and omega 3

15 mg zinc in the afternoon

my iron is ok as my periods have stopped, but I used to take spatone in the afternoon and zinc in the evening.

I take together health from boots or online. I’ve recently been taking extra b12 and folate as I was low, tested by gp as was having ongoing fatigue and tingling symptoms despite a good tsh.

Hopefully Wednesday the endocrinologist can help

Really helpful @WarriorN - I had no idea. Where can I source this info? Did an endocrinologist work this all out for you from your blood tests?

Should everyone be refered to an endo? I haven’t been. But I have private insurance if needed.

Interesting about the stomach acid, as I have acid reflux, and I’ve just realised I’m not being sick as much as I was. I am being very careful with diet though.