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.

No, it isn't, but it is thyroid hormones in a format that needs to be broken down into its components by your body and some people either don't have, or lose, the ability to convert it properly.

@JellyBabiesmunch I take Armour (similar to Erfa). I got it prescribed through an endocrinologist and pay for it privately through a pharmacy in London. I believe in rare cases it's available via the NHS, or used to be, but that's very rare indeed. @Baninarama is right about the NICE analysis.

Editing to add - while I'm a firm believer that some of us at some point will struggle on Levo alone, it should absolutely be the first line remedy and you should be on it, OP. Many GPs and even a lot of endos (who tend to be diabetes specialists) don't really fully understand the complexities of thyroid issues.

Thanks-I'm worried about the risk of going hyper at some point, but it's probably just anxiety talking.

I didn't realise how little energy I had compared to others until recently, be nice to get that back!

Sorry you are correct - I should have said Levothyroxine is synthetic thyroxine made in a laboratory

I contacted Thyroid UK who sent a list of private Drs / Endocrinologists in my local area who specialise in Thyroid issues .
I also found the Health Unlocked website particularly helpful in assisting/ understanding the Thyroid . There is a forum dedicated to Hypothyroidism

Good morning @Firefly1987. I've had a thyroid condition since 1990 and have read the British Thyroid information since its inception in 1992.

From what I understand people with an overactive thyroid, once treated, become hypothyroid or underactive. The doses of levothyroxine vary because what remains of the thyroid after treatment varies, as does the activity of the remaining thyroid.

If someone with an underactive thyroid becomes overactive, it is because they are over-medicated. That's why doses start lowish and rise gradually in conjunction with blood tests. The thyroid will not and cannot kick back into action without medication once it stops producing enough (there may be rare clinical reasons that I am not qualified to comment on but they are vanishingly rare).

The only bind I have experienced since starting on levothyroxine in 1990 is the utterly ridiculous imposotion of 28/56 day prescribing.

For those asking how to find a good endocrinologost, look up endocrinologists on the websits of your local hospitals. Their biographies, indicating areas of special interest will be there. I have a cracker in SW London if anyone wants to pm me.

But not artificial

Have you read the thread?

Yes, they have now (hadn’t when I started the thread).

Apparently the reason it’s currently under active is because of an autoimmune disease (which I didn’t know I had). The Dr wants to consult an endocrinologist before prescribing anything.

I wonder whether the locum perhaps just phrased it badly. He made me concerned though.

Op have you had your VitB12 and folate (folic acid) levels tested? And your vitD levels? It’s common for people with thyroid disease to be low in these and nearly everyone in the UK and Ireland is deficient in vitD in the winter.

Being low in these can add to how shite you are feeling.

Hashimotos? I thought most cases of underactive thyroid were autoimmune, that's why we are underactive, because our body is attacking the thyroid.

I don’t know- this is all very new to me. I’m just waiting for the Dr to get back to me, and hoping it’ll be soon!

I was referred to an endocrinologist years ago because the doctor kept telling me to reduce my dose and when I did I felt like I was dying. She was absolutely useless, just told me to stick with the dose I was in without much explanation or further investigation. I wonder if I should see a functional medicine specialist.

I’ve been on thyroxine for 30 years.

the British thyroid foundation are an excellent charity; if you join you can also send them queries and call their help line, as well as a quarterly mag.

the website alone is very helpful though

I’ve found this thread really interesting- diagnosed 12 months ago and still adjusting/settling into medication levels which have been adjusted a few times in that period.
i wondered if anyone has any tips re weight loss. I have cleaned up my diet and have lost a few pounds but I do feel like I’m trying to starve myself to lose more weight. I’m already weighing my breakfast (fat free Greek yoghurt and 30g bio and me granola) and my main evening meal which I eat no later than 6pm is around 600 calories.

It's a lot to get your head around. I still don't fully understand T3, T4, antibodies etc. but yes most of us have Hashimotos I would think-my doctor never told me that actually he just said it was autoimmune, but I knew it had to be that from reading about it. Hopefully you hear something soon!

Thank you! Yes, that’s all my Dr has said too.

Is that all you eat in a day?

I was lead to believe that once you got the correct medication, the thyroid weight would go…

Excuse me? I don’t ‘think’ anything. The Dr was hesitant about medicating me, so I asked whether there was anything I could do to help it naturally.

When a Dr says let’s wait- if I prescribe this, you’ll be on it for the rest of your life, you trust their judgement, and are hesitant too. The thing is- I felt like crap, so I started a thread asking for anyone’s lived experience.

If you’d read the thread, you’d understand that I have since had another blood test and are waiting for an endocrinologist to decide what, and how much, I need to take.

When I was diagnosed around 2008 I was on a very low dose of thyroxine with regular blood tests , approx every 4 weeks , and the dosage was gradually increased in accordance with the blood results until they were within the parameters needed , over the years they have been reduced very slightly again depending on bloods

I think you just need to see a decent endocrinologist.

On Levo for 10 years now - literally a life saver! Once the doc got the dosage right which can take a bit of time, things have been great. One thing that I found was that taking it as prescribed on an empty stomach made me sick - very! I now only take it after a meal - and it works for me!

No I have a Zoe gut shot with my breakfast and I have 100g of berries in my breakfast. Usually have a pot of fresh soup and an apple for lunch then the dinner of circa 600 calories. I also have a couple of coffees with milk each day. I eat that Monday to Fri and I have a few treats at the weekend - maybe a glass of wine sat and sun, a piece of cake on a Saturday and swap the soup lunches for something like egg and avo on toast. It’s frustrating I did lose weight initially when my dose was upped to 100mcg but it seems to have slowed now and I still need to lose more

I was lead to believe that once you got the correct medication, the thyroid weight would go…

well it happens in reverse, I was hungry all the time hyper and lost weight eating over 4000 calories some days and angry all the time 😂

tbh I found that when I went under active my appetite decreased and I only wanted 2 meals a day - so would normally have breakfast and dinner about 7 hours apart.

Is your appetite decreased?

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?

Anyway the last few years have been horrific. I have been extremely depressed, my memory loss was so bad my family were so upset I went for a dementia test (it’s rife in my Dad side of the family from late 60s - dead by mid 70s) - I failed a Masters course I was on. I was highly agitated - caused issues at work and lost my job (now unemployed with zero confidence). My motivation and metabolism stopped - spent most of my days in bed and my house is a pit. Weight ballooned to 13.5st at 5.3 - but I was comfort eating and totally sedentary. I never thought of hypo - assumed this was all meno and depression and a bad life spiral. At one point earlier this year after yet another car crash life incident I was in a state of su@cd@L ideation. I had been prescribed heavy duty ADs - mertazapine and venlafazine which I didn’t want to use as I had a period on them 20 years before and I couldn’t get off them.

Anyway at a standard GP appointment this year looking to up my venlafaxine dose my GP said let’s run some standard blood tests which she mentioned should have been done before AD prescribed. Lo and behold hypothyroidism revealed. On 50 and the anxiety, fog, depression, memory issues have lifted. I then went on Mounjaro and have lost 3stone in 4 months which has been life changing for me.

I don’t know how long I was undiagnosed hypo thyroid - but my BP and cholesterol were through the roof over the years (on meds for both) - the obesity would have contributed. Basically physically and mentally untreated had left me in a life threatening situation (heart attack, stroke, sui@idal) and my career and financial situation has imploded which I am not sure I can recover at 59.

My mood and memory are better now. My confidence is shot and I need to start at the bottom looking for work having been out of employment for 18 months.

My motivation is low so maybe need to go back for another blood test to see if 50 is the correct dose. Not sure if my cholesterol and BP will have reversed after years of untreated hypothyroidism.

So I really encourage you to take the medication. I would say I noticed a significant shift within 6 weeks.