updated journey

[ScriptMaz]

I’m getting so frustrated with this underactive thyroid. My only symptom before I was diagnosed again was unexplained weight gain. I had put on half a stone but hadn’t changed any habits. After starting on levothyroxine I put on another 2 stone. This may have been made worse due to all my joints seizing up with the medication. Tried different brands and still left in constant joint pain. I’m now on 20mcg of Liothyronine and the joint pain has disappeared. I am now able to resume my exercising but have become so unhappy as I’m still overweight with no sign of weight loss even though I’m exercising every single day and eating less

[greygoose]

20 mcg is a very small dose for someone on T3 only. So, it doesn't really suprise me that you're still having problems. And I doubt if the exercise is helping because your under-medicated - if you're using your T3 for the exercise, then you don't have much left for other bodily functions.

The weight-gain is more likely to be due to water-retention than to fat, so low-calories diets are not going to get rid of it. They'll just make you miserable and nutritionally deficient.

Have you had your vit D, vit B12, folate and ferritin tested? These all need to be optimal for your body to be able to use the hormone you're giving it.

[ScriptMaz in reply to greygoose]

I’ve had them all tested and they are within range, not optimal. It just annoys me that weight gain is the only symptom I had before diagnosis and got worse after I started taking medication. I don’t have any of the other usual symptoms of UAT and never really had them

[greygoose in reply to ScriptMaz]

There are an awful lot of possible hypo symptoms, apart from 'the usual', and a lot of them we don't even scribe to thyroid. And, every hypo has his/her personal symptom list. However, it very, very often happens that when you start levo (don't think of it as medication, it's thyroid hormone replacement) you symptoms are exacerbated, and new ones appear. That's the way it works, because your body could have been chugging along for years with sub-optimal levels of thyroid hormone, with the adrenals taking up the slack, and has adapted to those levels. When you start taking levo - or any other form of thyroid hormone replacement, everything gets shaken up and the body has to readapt to new levels of thyroid hormone. Plus the fact that very often, the intial dose of levo is not high enough to replace the amount of T4 your thyroid was managing to make, so you become more hypo rather than less.

But, we have to start low and increase slowly with all hormones. We can't just dive in at a full replacement dose because it would be too much of a shock for the body. But the problem is, doctors often do not understand how to dose/increase thyroid hormone replacement, and leave us under-medicated for too long, which further complicates things.

So, yes, it's annoying, but it's better to be annoyed than to be ill. And, it's nobody's fault, that's just the way it is.

So, if you know your nutrients are sub-optimal, are you supplementing them?

[ScriptMaz in reply to greygoose]

The levo left me barely able to walk which is why I stopped taking it and switched to Liothyronine. That seems to have no side effects so it’s all good. I’m taking vitamin D supplements, selenium and NAC which I saw on Dr Isabella Wentz’s page. I’m considering phoning my endocrinologist to see if it’s worth getting an increase in Liothyronine and see if that helps

[greygoose in reply to ScriptMaz]

Well, hormones don't have side-effects as such, but you could have been reacting to the fillers. Or, it's true, that some people tolerate them better than others. But that's due to the way your body handles them. I couldn't tolerate T4 either, not DHEA. But I'm fine with T3. We're all different. But it's not the fault of the hormone itself.

If you're taking vit D, are you also taking vit K2-MK7 and magnesium, the co-factors of vit D?

B vits are very, very important - especially B12. And symptoms of B12 are very similar to hypo symptoms. So, essentail to optimise those.

[ScriptMaz in reply to greygoose]

Thanks for that. Yes it would’ve been the fillers that caused the issue for levothyroxine. The doctor was useless but the endocrinologist prescribed the Liothyronine straightaway. I take magnesium citrate at night but I’ll add the others. I just feel like I spend most of my day taking tablets and supplements 🤦🏽‍♀️. In the past my body hasn’t been great at tolerating any medication. I have suffered chronic migraine for nearly 20 years and no medication has worked for that either

[greygoose in reply to ScriptMaz]

Could be the hypo causing the migraine. An increase in dose could help get rid of it.

[ScriptMaz in reply to greygoose]

I’ve had chronic migraine long before the UAT started. The frequency actually increased when I started on levothyroxine. Exercise is what reduces the pain and that’s the main reason I exercise so much

[greygoose in reply to ScriptMaz]

But how do you know when the UAT started? That's something that is very difficult to know. And symptoms can start long before we see anomalies in the blood test results.

[ScriptMaz in reply to greygoose]

In 2018 I was diagnosed borderline underactive but had no symptoms. It was found in a routine blood test. I had my first migraine in 2004. There’s a history of migraines in my family so I’m not sure they are connected

[greygoose in reply to ScriptMaz]

Well, you'll see if they get better as you increase your dose. But pretty sure you're going to need a lot more than 20 mcg.

[ScriptMaz in reply to greygoose]

I get such conflicting reports. Some people said I was starting on too high a dose. I just hope at some point I can find the correct dose. Thank you for all your advice

[greygoose in reply to ScriptMaz]

How much were you started on?

[ScriptMaz in reply to greygoose]

They started me on 20mcg a day and my review is on 9th of May

[greygoose in reply to ScriptMaz]

That is very high for someone that hasn't had T3 before, yes. The normal starter dose is 5 mcg. So, it's going to take a long time for your body to adjust to that dose and the hormone to start doing what it's supposed to do. However, highly unlikely that that will be your optimal dose. Make sure to increase by not more than 5 mcg every two weeks for the future.

[sparkly]

Sorry if this doesn't apply to you. Are you at the age where perimenopause/ menopause could be the issue? Weight issues are common topic in the menopause world. Having thyroid issues and menopause makes it even more difficult for us.

[ScriptMaz]

I’m 51 so it could be but my periods are as regular as clockwork and my sister is 57 and still having regular periods too. I’ve been thinking about asking my doctor about hormone tests to see if I’m lacking in oestrogen

[sparkly in reply to ScriptMaz]

I too couldn't tolerate thyroxine, had allergic reaction to fillers, made me very ill after initially doing great. I'm on T3 only too and also never been able to lose weight even gaining when eating next to nothing so I feel your pain.Only this last year have things seem to change and now lost a stone in a years, only 1lb a month but i'm losing slowly.

I've had fatty liver, high and low cholesterols, likely insulin resistance so basically metabolic syndrome. Going off recent bloods over last year my endo thinks I've reversed the fatty liver and all other bloods now in range.

The start of last year I started increasing calories, high protein, plenty of water, started eating carbs, exercise of resistance training and walking but i think it was only when I started berberine supplent that I started to lose weight. Cannot say for certain as changed T3 brand same time that feel well on.

I'm also on hrt 8 years but only since testosterone add that I could start to exercise.

I've always been complex with both thyroid and sex hormones so never know which is causing what.

Also what ever dose of T3 I've been over the years and at one point over 100mcgs i still was unable to lose weight.

Other factors can be contributing to the weight gain like it has for me,

[FallingInReverse]

I’m always shocked when I read about people exercising regularly while hypo! When under-replaced it puts a lot of stress on you. I ran three marathons in my 40s, then hypo hit me from every angle. I sure wish I’d been optimizing my Ts through those years and maybe I wouldn’t have such a big hole to dig out of!

What’s your TSH, FT4 and FT3 and are you positive for antibodies?

[ScriptMaz in reply to FallingInReverse]

I have Hashimoto’s, diagnosed when I was borderline underactive in 2018. I don’t have my results to hand but when I was put on levothyroxine my TSH went down to 0.04. I need to exercise for my mental health and have only recently returned to exercise since levothyroxine left me barely able to function. Switching to Liothyronine made that possible again but I still feel overweight

[FallingInReverse in reply to ScriptMaz]

I’m guessing since you are on Lio that you have Free T4 and Free T3 readings?

I know on T3 mono (I think) one doses by symptoms, but it would be helpful to get a total picture of your history to see what your bloods were when diagnosed and before starting/during Levo mono therapy.

Your Lio dose is quite low for T3 mono.

Plus - overweight is a symptom/sign that you are under-replaced. Just like every other symptom like high cholesterol, joint pain, skin issues, head aches, taking naps, etc etc. Your weight gain is not due to what you eat or how much you exercise, it’s a result of your metabolism malfunctioning from low free Ts.

So whether you have a family history of migraines or not, if your Free T3 is low, you will feel an impact from that alone. So once properly dosed, you might still have a migraine problem, but at least you will have solved for the hypo-caused migraines!

[ScriptMaz in reply to FallingInReverse]

This is the dose I was started on. I’ve only been taking Liothyronine since November and haven’t been retested yet. I have no skin issues, no fatigue, no cholesterol issues, only overweight. I know it’s my metabolism that’s not working. My migraines are stress related and menstrual so I would just like to know if I get my Liothyronine dosage upped will that kick start my metabolism. I eat healthily and drink plenty of water, don’t drink alcohol or smoke and have a great sleeping pattern so I don’t know what I’m doing wrong

[FallingInReverse in reply to ScriptMaz]

You’re not doing anything wrong - although we need to see the free T numbers, know that it is ONLY thyroid hormone replacement that will get your metabolism working again.

Thyroid IS synonymous with metabolism, it drives and regulates metabolism- which is not just the common use of the term for whether we gain weight or not. It is the mechanism our body goes through to convert food to energy, energy that is needed for every single essential bodily function from breathing to blood circulation to cellular growth and temperature regulation.

So underactive and under-replaced thyroid is the cause.

I will also say - just because you don’t have a ton of symptoms you are chalking up to your hashis … your body is still struggling. Again - I ran three marathons and the only complaint I had was I needed a nap after instead of going out with my friends to celebrate. Then 8 years later it all hit me. (Including my cholesterol which creeped up in the later years of being undiagnosed.)

Also, your T3 replacement is going to suppress your natural thyroid hormone production (which is how it works) and so you must work up to a full replacement dose.

If you keep looking at the weight you’ve gained, you won’t make any progress on the core driver, and your adrenals will suffer over time.

[ScriptMaz in reply to FallingInReverse]

The only reason I’m focusing on the weight is because I feel that’s the only issue I’m having. I currently have sciatica but I’m receiving physio for that and the pain in my back and leg has eased.

For some reason my blood tests never show T3, only T4.

On diagnosis TSH was 16.11 and T4 was 7.2

On levothyroxine TSH was 0.04 and T4 was 16.3

[FallingInReverse in reply to ScriptMaz]

Well, just remember the weight is likely a result of your sub-optimal thyroid and so the treatment will address your thyroid hormones.

Your weight is probably not a result of eating too much. Which is why if you eat less/exercise more you won’t see any change.

Your pre treatment vs post treatment FT4 look like you are going in the right direction but can you provide the range for the FT4? It’s probably something like 9 - 19 or maybe 12 - 22?

DippyDame and greygoose - tagging you as you’re the only t3 mono folks I can remember off the top of my head.

I’m out of my depth regards to tests when on T3 mono so I don’t want to say something out of whack.

Should one be on T3 mono without ever having FT3 tested? Is it all over to how you feel at this point?

[ScriptMaz in reply to FallingInReverse]

The range was 9-19. I stopped the levothyroxine though as it made me ill. I haven’t been tested yet on Liothyronine only but I have read that those results are pointless without T3 testing and the gp doesn’t normally test for that.

I just want to know if they will ever get me to the correct dosage. I feel like I’m banging my head against a brick wall sometimes 😢

[greygoose in reply to FallingInReverse]

Well, it's rather weird to start someone on T3 at all without ever having tested for it, but the important thing is to test it now, rather than T4. Because the T4 is going to be low if you're not taking any, and you do need a bit of a guide on the FT3 to back up symptoms - although, obviously, dosing shouldn't be done on blood results a lone.

ScriptMaz it's true that FT3 is very rarely tested because doctors don't know what T3 is! But, it doesn't take a genius to realise that if you're taking something, that is what should be tested, not something you're not taking. So, no point in testing FT4. You wouldn't test vit A to see if your taking enough B12, would you? So, try point that out to them. Otherwise, there's no point in testing at all because the TSH is obviously going to be low on T3 monotherapy.

If they won't increase your dose to take you up to a dose that makes you well, you could try buying your own and giving yourself the increase you need.

[ScriptMaz in reply to greygoose]

When I speak to the endocrinologist I’ll ask her to increase my dose. I feel like my gp was only looking at test results rather than how I was feeling and that was bloody awful on levothyroxine. Hopefully my endocrinologist will be more informed and go by my symptoms

[greygoose in reply to ScriptMaz]

Hopefully, but not likely. They are all obsessed by the numbers - especially the TSH. They just have very little understanding of thyroid, and next to no knowledge of symptoms.

[ScriptMaz in reply to greygoose]

And that’s annoying because they’re supposed to help. I was in tears to my gp because he wouldn’t listen to me when I said the levothyroxine was making me ill

[greygoose in reply to ScriptMaz]

They just don't have the education to either understand what hypo patients are going through, nor to help. In med school, I've heard they only spend one afternoon, out of seven years, on the entire endocrine system - which is vast. So, you can imagine how little time is spent on the thyroid itself. Basically,t they know nothing about it. They are told it's 'easy to diagnose, easy to treat', and that thyroid patients are drug-seeking, attention-seeking whingers making a fuss about nothing.

This thread might interest you. It demonstarts clearly the problems we encounter when seeking help from doctors for thyroid conditions:

healthunlocked.com/thyroidu......

[ScriptMaz in reply to greygoose]

Omg that’s outrageous. My gp seems to think that with levothyroxine it’s a one size fits all medicine. They refuse to believe my joint issue was caused by the medication!! I had to stop taking it to prove my point. T3 felt like my only option and it’s terrible that doctors think like that. They are more concerned about numbers rather than how a patient feels

[greygoose in reply to ScriptMaz]

Exactly. But that's the way it is, I'm afraid.

[DippyDame in reply to FallingInReverse]

So sorry things are going so badly for you, I fully understand what you are going through I can't write much at this moment but until I get back to you be assured there is a way out of this mess, it won't be quick and it won't be easy and you will need to work at it, possibly by yourself.

Medics are clueless and this really needs lived experience rather than the list of (often unreliable) numbers that they rely on

Meantime you might like to read my bio which explains my thyroid journey to T3-only.

And you might find this e-book helpful it's is on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton.

For now...

We're here to help....just ask!

[PRJ20 in reply to DippyDame]

ScriptMaz Just tagging you to make sure you see this last reply, as Dear DD has accidentally replied to FallingInReverse after they'd tagged her to add experience of T3. 🙂

[DippyDame in reply to PRJ20]

Argh! Sorry about that ScriptMaz

Thank you PRJ20

[ScriptMaz in reply to DippyDame]

I’ve just read your bio. Sorry to hear you’ve had a lot of issues but glad you are still here to tell the tale. My doctor is useless in understanding the issues. When I went to them about the chronic joint pain they told me it couldn’t possibly be the levothyroxine and sent me for loads of different tests, which all came back normal. They said they would go down the route of pain management. I said no and made the decision to stop taking it to prove a point. As suspected the pain disappeared. After retesting the thyroid my TSH was 186 so they forced me back on the levothyroxine and of course the joint pain came back. I went to the endocrinologist and she put me on T3 and it seems to be helping. I am still overweight no matter how healthily I eat and exercise every day. My metabolism isn’t working but I feel great otherwise. I’ve got a call scheduled with the endocrinologist in May so hopefully I can get an increase and get it working again

[Batty1]

In the same boat and it sucks and doctors have no idea how to fix this weight increase.. I eat air and gain weight… so sad.

[ScriptMaz in reply to Batty1]

It’s so demoralising. You do all the things you’re supposed to do and yet keep gaining weight. I just want my metabolism to work. Is that such a big ask 😢

[Batty1 in reply to ScriptMaz]

I wish I had the answers to this hypo-weight gain. The one thing for sure is all of my doctors are useless and they think I did this to myself because they can’t see that weight wasn’t and issue for me until I became hypo and no amount of thyroid meds T3/T4 has made a difference…. I do think that menopause and hypothyroidism are a bad combination… separately menopause didn’t pose as much of a weight issue (at least for me) but add in hypothyroidism with menopause and all hell broke out and my weight just climbed… crazy but true.

[ScriptMaz in reply to Batty1]

My body has changed dramatically and I’m struggling with that. It might not sound awful to other people who have weight issues but I went from a size 8 to a 12 so although to other people I’m not fat I feel it. I haven’t changed my lifestyle at all yet I put weight on. I only feel good when I exercise so when I was unable to do this it was unbearable. Luckily the last few weeks I’ve started to feel able to exercise but sometimes I think it’s pointless as my body isn’t able to change back to the way it was

[Batty1 in reply to ScriptMaz]

Don’t give up exercising especially because you’re not seeing a drop in weight… this would be a terrible mistake. I would kill to be a size 12 but I 100% understand the stress of it all gaining period isn’t something people stride for sadly as women we are made to feel bad when we gain weight and trying to explain to people why you have gained weight… just gets you the “eye rolls” as if your making excuses for bad life choices… I get this from doctors a lot which then has my mind on over drive hating every decision I had made that got me here… I do have a lot of extra health issues that hitched a ride with my hypothyroidism (psoriatic arthritis) unbearable spent 2 years bed ridden and when I can finally walk Im hardly able to(I walk like a new baby who just discovered her feet) it’s crazy but nothing I have done has made any difference to my weight… everyone says to increase my meds which I have but still doesn’t seem to help… I eat only 2 meals a day no junk … nothing. My biggest problem is lack of movement which is not impossible but dangerously difficult because Im currently suffering with bouncing vision (everything bounces as I walk) sidewalks go up and down, trees go up and down, roads bounce up and down…. You get it everything in my vision moves …. Try exercising with that Im terrified to fall and break something and create another problem… I get no joy finding answer or solutions for this either.., pathetic!

Any way keep moving your way a head of the game … don’t let your mind mess with you and definitely don’t let the scale ruin your joy in life.

[ScriptMaz in reply to Batty1]

Thanks. I love exercising so I’ll keep going and hope that at some point I get my body back. Good luck with your journey too 🥰