I fear my body has changed for the worse since starting levothyroxine

[ockerdoc]

I’ve done keto and carnivore off and on for years and always felt amazing on them loads of energy etc. I’ve been doing carnivore this week and I feel completely different. It’s like my body has changed my metabolism has changed I don’t feel that rush of energy anymore I felt nothing at all just flat all week. I don’t think I’m ever going to feel like I did pre Levo ever again. I just wasn’t expecting it when I began this treatment. I was expecting this great rush of energy again. It’s like I’ve got to come to terms with being somebody else. It’s very depressing. I just don’t know how starting Levo can change you so much 🤷‍♀️

[JenniferW]

I feel like there's chunk of the story missing here. When did you start taking levothyroxine and why? It doesn't get prescribed out of the blue, you must have gone to the doctor with some symptoms.

If you still feel rubbish after the levo you might not be on the right dose. If you post your last set of blood tests with ranges, there are some very knowledgeable people on here who can advise you.

[ockerdoc in reply to JenniferW]

Yes thank you my T4 was 96% through the range and my T3 was 73% through the range so pretty much optimal heading for over medicated on T4. I hear alot of experts say that you mourn your old self and I think that’s what’s happening. I had 3 TSH tests at around 4.8 in a 2 year timespan which is why they prescribed me Levo. I wasn’t 100% at the time looking back. But I just feel different since starting Levo just not my old self anymore.

[JenniferW in reply to ockerdoc]

That must be frustrating. Grey goose has given you a great reply explaining what's going on, but just to add, if you carry on feeling rubbish after a few more weeks, do tell the doctor. I was in your position and it actually turned out I had developed lupus and rheumatoid arthritis at the same time.

Also have you had your vitamin levels like vitamin D and iron checked? Keeping them optimal (not just above the bottom of the range) helps too with how well your thyroid works.

[ockerdoc in reply to JenniferW]

Yes vitamin levels are great thanks and I also have psoriatic arthritis so that affects my energy levels aswell.

[Batty1 in reply to ockerdoc]

I have Psoriatic Arthritis and my energy levels suck most of the time but Im in a 7 year flare …. My PSA started after my Thyroidectomy.

[ockerdoc in reply to JenniferW]

Just curious how has your Rheumatoid arthritis affected your thyroid medication and overall energy?

[JenniferW in reply to ockerdoc]

Well now that's quite a question. History of my diagnosis:

What happened was that I was under a lot of stress for a long period. This pushed my immune system into overdrive and it started attacking my body. There are several auto-immune conditions and which one you get is partly bad luck and partly genetic.

In my case it was my thyroid and my joints. Happily not my organs. When I flare up it is like being ill with a bad cold in terms of aches and tiredness. This is not related to the tiredness caused by the thyroid levels being wrong. The thyroid has been damaged and struggles to produce the right levels of hormones. When we get given the levothyroxine it boosts the levels and gives the body enough to work on to feel more normal. However it is a complex system of negative feedback loops and we need enough of some vitamins for everything to convert from one thing to another.

When I was initially diagnosed the doctor started with the thyroid tests because that's the starting place for 'tired all the time'. He commented suspiciously that my test results wasn't very far out from normal for such bad symptoms of fatigue(I had been in bed for a week). They got me on the pills and I had normal blood test results but still felt tired and mentioned I had been pulling muscles and tendons a lot - they then ran lots of extra tests which indicated both lupus and rheumatoid arthritis

The pills for the lupus and RA helped with the tiredness too as well as the pain, but the fatigue is the hardest thing to treat. I have to pace myself and try to avoid stress. I also have to keep my blood sugar levels constant, that makes a difference. Skipping meals is not an option and if I am ill with a stomach bug it takes longer than it used to to get better in terms of energy levels. They swing around for weeks afterwards if I lose weight.

Pacing myself, eating carefully to maintain even blood sugar levels, avoiding stress and the vitamin supplements make the biggest difference after the medication. Also some exercise. Overdoing it is bad, but so is not doing anything.

I hope this helps, sorry it's a bit of a ramble.

[SecondAngel in reply to JenniferW]

I'd echo this (I have psoriatic arthritis on top if my thyroid issue) - if you have one autoimmune disease like hashimotos thyroiditis then you are likely to have others (maybe just more likely than average idk) and autoimmune diseases impact energy levels etc.

[greygoose in reply to ockerdoc]

You're not converting very well. But, could be that your FT4 is just too high. If you reduce your levo just slightly, to bring the FT4 down a bit, your conversion might improve. But, experiment with this yourself, don't involve your doctor - at least, not until you know if it helps or not - because once a doctor has reduced a dose, it's very hard to get him/her to increase it again.

[ockerdoc in reply to greygoose]

Thanks greygoose Yes I treat myself so I don’t involve my doctor. I was on 100mcg so I’m experimenting now on 75mcg 4 days a week and 100mcg 3 days a week see how that goes.

[greygoose in reply to ockerdoc]

That sounds like a good idea. But, do stick to that changed dose for at least six weeks before retesting.

[jgelliss in reply to greygoose]

👏👏👏👏❤

[greygoose]

I just don’t know how starting Levo can change you so much 🤷‍♀️

It doesn't. It's being hypo that changes you.

You have to understand that you didn't become hypo the day you were diagnosed. It's probably been going slowly downhill for years, and your body has adapted to low levels of thyroid hormone, and the adrenals have stepped in to take up the slack where they can. So, by the time your symptoms take you to the GP, you've already been hypo for quite some time. Then it takes more time to actually get diagnosed because they don't want to diagnose you...

So, your body has got used to a new norm. Then, you start taking levo. And I know doctors think this is an instant cure, but it isn't. Your body has to readjust to increasing levels of thyroid hormone, and it's not easy. It's usual for symptoms to get worse, or new symptoms to appear as the body goes through this terrible up-heaval. You need to be kind to yourself, and cut yourself some slack. And pestering your body with unusual eating patterns really isn't the right thing to do at this time. Your metabolism has changed, but it's down to they hypo, not levo.

Levo is just the thyroid hormone T4. It may be made in a lab, and be synthetic but it is exactly the same as the T4 your thyroid made before you became hypo. But, what will be different is that your thyroid also used to make some T3. And it used to convert some T4 to T3 inside the gland. So, you are missing that. And, it depends on how well you convert whether or not your body can bridge that gap. But, it's bound to be difficult at first.

You need to push on and tell yourself that it will get better. You're doubtless not on the right dose yet, and that will take a while, but you will get there one day. In the meantime, instead of dieting, make sure all your nutrients are optimal, because they need to be for your body to make correct use of the hormone you are giving it. Get plenty of rest and avoid stress as much as is possible. And think positive thoughts, because your body is listening!

[ockerdoc in reply to greygoose]

Thank you 🙏

[greygoose in reply to ockerdoc]

You're welcome.

[Rosebud1955 in reply to greygoose]

Love that great advice GG. It sent shivers to my spine. Your responses are always so candid and direct to the point. I love you for that!🙏🏻 I will savour that responses and read it over and over again. Especially when I’m have bad days.

[greygoose in reply to Rosebud1955]

Thank you, Rosebud, glad it's of some help.

[JoJoloveschocolate in reply to greygoose]

Love this. I’m going to read this piece of advice every day…for the rest of my life! x

[WaystarRoyco in reply to greygoose]

So inspiring, greygoose .

[greygoose in reply to WaystarRoyco]

Thank you.

[Chrysali in reply to greygoose]

Thank you, that resonates with me and it’s just what I needed to hear today.

[greygoose in reply to Chrysali]

You're welcome.

[Singwell in reply to greygoose]

Just wanted to comment that you couldn't communicate more clearly the underlying reason why hypothyroidism can lead to heart Arrythmia and palpitations. "you didn't become hypo the day you were diagnosed. It's probably been going slowly downhill for years, and your body has adapted to low levels of thyroid hormone, and the adrenals have stepped in to take up the slack where they can." Why don't GPs get this? My GP literally shouted at me 4 years ago when I told him my untreated subclinical hypothyroidism had been a factor in developing AF. Rant over.

[greygoose in reply to Singwell]

Well, I hope you shouted back! How very unprofessional. The only time a doctor shouted at me, he ended up wishing he hadn't!

But, they really have no idea about any of it. They just don't spend the necessary time on thyroid in med school. And when they do their internship, or whatever it's called, in hospitals, they're not likely to come across many people there due to hypo, so they don't get the practice. The main problem is that although they know nothing, they think they know everything just because they're doctors!

[Britpol in reply to greygoose]

Do you know the difference between god and a doctor? God knows that he is not a doctor . ..

[greygoose in reply to Britpol]

[Singwell in reply to greygoose]

It was because I'd already made a formal complaint about the practice- their management and that certain things hadn't been picked up e.g. I wasn't told about dangers of hypothyroidism (subclinical or otherwise), and they failed to inform me.when I'd requested an ECG that the reading was Bradycardial. I'd asked them to check my.heart and they told me the test was normal. I was 47BPM which isn't low low, but they should've checked my records and got me in for.blood tests. When my AF kicked off later that year my TSH was marked as high in A and E and STILL they did nothing. Then came the pandemic.and thr rest is history. If only I'd known...

[greygoose in reply to Singwell]

That's no reason to shout at you. If they did their jobs properly, there'd be no reason to complian. I mean, honestly, what would you do if a service was botched on your car, and the mechanic shouted at you? You'd probably stick him one on the nose! These doctors think they can get alway with murder - sometime literally - just because their doctors. Well, I don't stand for that! They may have spent x number of years in med school, but they're still ordinary human beings for all that. Nothing special about them. Most of them are pretty useless, anyway.

[Singwell in reply to greygoose]

Well, he's left the practice now and good riddance. And yes, it was inexcusable since he was head of the practice. Things have improved at our surgery since then and we're extremely lucky to have a semi permanent locum GP who actually understands a bit about hypothyroidism.

[greygoose in reply to Singwell]

Well, that's wonderful! So glad to hear that.

[Popscicle in reply to Singwell]

How strange - in medicine it is a known fact that AF is more common in patients who have hypothyroidism or RA (rheumatoid arthritis)!

[Singwell in reply to Popscicle]

Apparently not. This was in 2020. Even an electrophysiologist I paid to see - really high level in his field- said 'no, hypothyroidism not likely to be a factor in causing my AF as surely it would lower the heart rate'. It wasn't till I asked my Arrythmia Nurse about my thyroid results (flagged by a doctor late 2022) that I had the link confirmed. Thank goodness for this group!

[Popscicle in reply to Singwell]

I’m astonished that your drs denied the link. It’s been known in medicine for donkeys years!

[Otto11 in reply to greygoose]

Thank you so much for your caring advice. I’m in a bad place right now so will take it on board. So appropriate right now. Thank you 🙏🏻

[greygoose in reply to Otto11]

You're welcome. Hope you feel better soon. x

[Litatamon in reply to greygoose]

What an informative post greygoose. Thank you for it.

[greygoose in reply to Litatamon]

You're welcome.

[jgelliss in reply to greygoose]

Brilliant 👏 👏 👏 👏 THANK YOU!!!!!❤❤❤❤

[Urbanski in reply to greygoose]

What a brilliant & helpful reply!! I've learnt waaay more since joining this group than I ever have from GP's! Thank you 🥰

[greygoose in reply to Urbanski]

That's because we know way more about it than any GP.

[SlowDragon Administrator]

we also NEED some carbs to help convert Ft4 to Ft3

Very low carb will reduce conversion rate

[Popscicle in reply to SlowDragon]

I’ve mentioned that in my reply since the gut is one of the places where T4 to T3 conversion take place. This relies on our good bacteria which require high fibre, prebiotic foods (and therefore carbs) to multiply. High levels of bad bacteria impair conversion.

[HealthStarDust]

I feel you may benefit from staying on a dose for 3 months allowing both FT4 and FT3 to stabilise, especially with a 96% range FT4 and 70ish for FT3. I think when you are this close to being optimum the, staying on your dose longer is better than keep making tweaks.

I don’t think dieting helps when you’ve yet to reach your optimum dose either.

Please be kind to yourself and remember the small tortoise wins the race.

[ockerdoc in reply to HealthStarDust]

Thank you 🙏

[JoJoloveschocolate]

I expected the same, Ockerdoc. I thought once I started levo I’d straight away lose all the weight and be bouncing off the walls….doing backflips through the town…while riding a unicycle. It’s soooo very hard this hypo malarkey. I think it’s just takes time to adjust and climb back up. Please try not to let it get you down too much. Every one here understands. Good days are coming.

[ockerdoc in reply to JoJoloveschocolate]

Hope so thank you 🙏

[WaystarRoyco in reply to JoJoloveschocolate]

I love that JoJoloveschocolate : “good days are coming”!

[Mini2023]

it took about a year to get my levels right. You have to keep on with the doctor. I actually lost the most weight not eating meat and eating fish a veg cut bread milk out completely. And I was excising a ridiculous amount. But that wasn’t sustainable. I don’t think my body will ever be the same before having thyroid issues I’ve excepted that but what I want is to feel better. I actually couldn’t care less if I was alone the rest of my life, since body shape seems to be so important to everyone else. I just need to feel mentally well. I take a cocktail of vitamins zinc b12 b6 selenium D and iron I notice energy level difference on the days I don’t take them

[ockerdoc in reply to Mini2023]

Thank you I’ve been on it 6 months now so hopefully it’ll improve then. Good to know it took a year it gives me some hope thank you 🙏

[Zazbag]

I don't think it's the levothyroxine per se, it's more likely the fact that with levothyroxine monotherapy, you're relying on your body's ability to convert T4 to T3, but when you reduce your carbs, this conversion process slows down. Have you considered trying T3? It was life-changing for me. Sorry you're struggling! I know how tough hypothyroidism is when it's not treated properly.

[ockerdoc in reply to Zazbag]

Thank you yes I have thought about T3 but I treat myself so it’s a bit more expensive. I’ve been on it 6 months so I think I’ll give it another 6 months and then see where I am. If I still feel like crap then yes maybe T3 may be the way to go.

[Zazbag in reply to ockerdoc]

If you can afford T3 now, I wouldn't wait. I wasted good years of my life waiting for levothyroxine to suddenly help. I wish I could get that time back.

[Margareta3]

If you want to know why you feel worse on Levo and what to do about it, especially that you were doing keto and low carbs, please, listen to - see the link below:

jayfeldmanwellness.com/ep-9...

And for a deeper explanation & help, look up also ref papers with links available there under each podcast. Excellent material! What they say makes a lot of sense and has got quite solid foundations. Too bad I did not know it few year ago.

[ockerdoc in reply to Margareta3]

Thank you 🙏

[Popscicle]

60% of T4 conversion to T3 actually takes place in the liver whilst the rest of conversions take place in the cells of the heart, gut, muscles and nerves. Within the gut conversion relies on good healthy gut bacteria and they rely on fibre and a high pre-biotic intake. Given your current diet, it is likely that you do not have good levels of good bacteria because you’re probably lacking in both fibre and good prebiotic foods. So I agree with greygoose - your conversion of T4 to T3 is probably impaired. Since nhs blood test rarely include T3 levels (which would check your T3 levels) I suggest you do a private blood test which will check T4, T3, TSH, antibodies and levels of Vit B12, folate, vit d and ferritin. Greygoose and others will be able to recommend various private tests, costs and discount codes as will thyroid uk.