Increased anxiety levothyroxine: Hi, I know I... - Thyroid UK

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Increased anxiety levothyroxine

Cade83 profile image
22 Replies

Hi, I know I only did a post yesterday but I thought this might get better but clearly it isn’t and getting worse. My anxiety is so bad, I’ve started getting racing thoughts which I haven’t had since before I started sertraline 4 years ago. My resting heart rate is 10-20 bpm higher than when I was on 75mcg levothyroxine. I used to think I wished things would speed up a bit hoping this would increase my energy levels but if this is what I get for it I really don’t want it. I seem to have become so depressed as well. I keep panicking today really bad. I’m so tensed all the time. I’ve had annoying headache for last couple days. Sometimes when I’m up and about I feel dizzy. I know my T4 is only mid range around 17 but I don’t think I can hack this any longer and I’ve been on 100mcg for around 11 weeks now. I know it’s anxiety but I keep getting such bad thoughts I’m gonna have a heart attack or something bad is going to happen. Should I go back down to 75mcg?

TIA

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Cade83 profile image
Cade83
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22 Replies

I would talk to your doctor asap? I feel your pain I'm the same when I tried an increase did less active stuff like walking and increased anxiety and sweating racing thoughts fast pulse it was awful went back to 50/75 dose alternative days seemed to work better for me ! But have never felt anything like normal since being diagnosed hypo in 2013 ive tried diets vitamins nothing worked . I hope you feel better soon x

Karunablue profile image
Karunablue

Hi

I couldn’t tolerate higher doses of Levo either. I kept trying to increase but each time it happened the anxiety was awful. They eventually said that I wasn’t converting T4 sufficiently so I’m on combo now T3/T4.

I’m also gluten free and do thyroid protocol by Antony William. Celery juice every morning. Cucumber juice at night. I feel so much better. It’s a journey trying to keep finding things which are optimal.

Hashihouseman profile image
Hashihouseman

Healthy (euthyroid) normal t4 is probably not so high (more often 14-15). Many people on here are blasé about living in high range free t4 because often it’s the only way to push t3 production to anything near what is needed. But for some, myself included, too much t4 is as bad or worse than insufficient.

Many Medics think t4 is like a smartie compared to t3 and yet it can have some debilitating consequences in their efforts to manage our conditions by tsh alone. For me levothyroxine has a rapid and significant effect at levels down to 10 µg. The biggest thing that helped me with levothyroxine is splitting the dose into 3 or more with slight increase in overall dose to compensate for lower absorption (I take 2/3 of mine with food during the day and on an empty stomach last thing at night and first thing In the morning e.g. 5 x 25).

This whole business of taking all the prescribed levothyroxine in one big dose on waking is the root of all Thyroid replacement evil in my opinion, the functioning human thyroid gland does not deliver 100 µg of T4 into our bodies all in one short burst! T4 is produced at more or less consistent levels over a 24 hour period and there is a gradual balancing between the total production and what is available in free t4 form. Whereas levothyroxine absorbed through the gut is all free t4, none of it is yet conjugated with the transport/storage protein as would happen naturally - so for a period the body is struggling to cope with far too much T4. One of the effects of excess free t4 in the cells where it is needed is that it reduces the rate of conversion into T3 because the cells are in negative feedback mode for conversion of t4 to t3.

I am convinced there are a range of undesirable side-effects from taking too much levothyroxine in one go and I definitely feel better, almost normal, splitting my dose. That said I also need a small amount of T3 which seems to allow for fine tuning of my thyroid metabolism as close as possible to how it used to be when my thyroid was functioning!

My take-home message would be try to emulate what a normal healthy functional thyroid gland would do and it doesn’t operate on a supply lead massive overdose stimulation of t4 most often prescribed by doctors! The healthy version releases T4 throughout the 24-hour period together with any additional T3 the system demands, anything up to and occasionally beyond 20% of the total production throughout the body. Replacing t3 probably takes the pressure off the t4 system and makes lower doses of levothyroxine possible, which in turn gets us to nearer normal levels of free t4 - not somewhere in the top part of the lab range, which by the way is definitely not normal.

Not accepting the need for replacing the faculty for central t3 production at all With the concomitant prescription of too much levothyroxine for any single dose is one of the greatest mistakes of thyroid medicine, for some people it can be like giving a paraplegic a wheel chair with a wheel missing and saying there! Now get on with it....

humanbean profile image
humanbean

Personal anecdote : I discovered that optimising my iron and ferritin as best I could eliminated my anxiety. I am convinced that I've been iron-deficient all my life until the last couple of years or so.

I suspect that deficiencies of any nutrient will worsen the body's functioning but will also affect the brain and could be the cause of anxiety.

Cade83 profile image
Cade83

Thanks for all yours replies, it’s so hard to figure things out and what’s best. It might be a stupid question but can one side of your thyroid be bigger than the other? I have a telephone appointment with my doctor this afternoon so I’ll discuss it all with her and see what she thinks. I think my best bet is to lower back down to 75mcgs cause I wasn’t feeling this awful on that. It’s hard when the labs don’t check T3 cause then you don’t get the whole picture. Thanks everyone 😊

dtate2016 profile image
dtate2016

Hashihouseman says it best and is similar to my experience. It is a conversion problem, and you do need to split doses / add a little T3. Dessicated bovine Thyroid gland is the easiest to find here in the states (without a prescription). And when you do find a source of T3 start out with very small split doses (2 to 3 times daily) and build still Ever so slowly until you find what works for you. You may have to reduce T4 for awhile (I did for I was actually overdosing on 100 mcg of Levo). As you continue to level off and find your way, remember T4 has a life and stays at systemic levels for weeks, T3 has a life of hours. T4 only IS like a wheelchair with only one wheel - or I’ve heard the metaphor of crutches. We need both crutches, not just one, and while they (T4 and T3) behave differently, they nevertheless must be balanced.

The celery juice ideas might work. For me and many others I use salted orange juice at night - keep it by my bedside, and take sips not gulps.

I follow the Thyroid Revolution protocol. They talk about how the adrenal glands also become involved - which can cause the jitteriness / anxiety. Salted orange juice keeps blood sugar optimized (emphasis on sipping), which calms the adrenals that try and compensate for a malfunctioning thyroid. They point to excess estrogen as a primary trigger for Hashimotos (even in men). For women it’s often after pregnancy that estrogen dominance gradually builds. But there are so many sources of estrogens in our modern diet today. Milk, plant estrogens (GMO’s), medicines, pesticides, and on and on. I’ve known many men who have gone on estrogen eliminating diets - some who had begun to develop breasts. “Man boobs” are not funny. But again, most especially women and more and more evidence is pointing to estrogen dominance as an underlying cause of Hashimotos / thyroiditis. They recommend raw carrots (daily) as a way to help absorb estrogens and encourage a healthy gut biome - which all contributes to a leveling of hormones.

Time fails if we go into the function of the liver in the whole T4 - T3 conversion process. I use a Braggs Vinegar and water drink every morning to rehydrate and clear toxins, keeping the liver eliminating pathways open.

It’s amazing how our body calms when thyroid hormones (T4 and T3) are balanced. And yes, ferritin and vitamins at optimal levels also help. So much to learn - and this is a great place to keep in touch, and keep learning. Hang in there, share what you find that works for you. It is a bit scary until you do. Listen to your body. Split the doses / reduce T4 for a little while. Add T3 In small, yes, tiny split doses gradually. You are looking to find the balance. Keep in touch.

endomad profile image
endomad

I feel for you, anxiety is awful, i still get it a few times a week, usually early when i wake or when i go to bed. Its free floating anxiety, not connected to anything, just an overall sense of doom, i try not to indulge it as i know it is just an annoying body/mind thing but it doesnt make it any easier.

I am on t3 and still get it. I had never been an anxious person until my thyroid was removed, my adrenal function is very low so for me i expect its just all my hormones struggling but it can reduce me to tears.

It sounds mad but i do positive affirmations, i sort of chant something to move the anxiety from my thoughts (i know i thought it was bonkers at first but it helps) i just keep repeating 'i am ok, this will pass' and for bad episodes i say out loud ' this is just my body misfiring, i have nothing to worry about' apparently you can not hold more than one thought at a time, so replace the thoughts with an easy affirmation till it subsides and tweak your meds till you find a balance. xx

jgelliss profile image
jgelliss in reply to endomad

I feel your pain . I had the same symptoms as yourself. I would second humanbean to have your Iron levels tested . Low Iron can mimic several symptoms thinking that low thyroid meds are not optimal. When in fact it can be low Iron levels.Low Iron levels caused me to have anxiety, panic attack, palpitations,hair fall out .

Best Wishes.

endomad profile image
endomad in reply to jgelliss

Thank you for your reply, I had all my vits etc done 2 weeks ago and my iron is really good, I work at keeping it top of range by eating liver once a week and lots of dark green veg, also fresh nettle tea.

6 years on t3 only I am stable but not been able to budge the last 3 symptoms joint pain, fatigue and anxiety. I get really anxious a few times a week so not daily, low cortisol doesn't help. I have asked my new gp for a referral to a bio identical hormone specialist as at 60 mine are all low and it's about the only thing iv not tried ☺️

jgelliss profile image
jgelliss in reply to endomad

When my Ft4 or Ft3 are on the high-ish side I experience aches/pain /irritability./insomnia/fatigue. You would need to run labs on Ft3 Ft4 TSH it can be very helpful for you . If you need some tweaking.

Best Wishes.

endomad profile image
endomad in reply to jgelliss

My tsh and t4 very low as I am t3 only. My t3 is top of range, less t3 hits me fast, I have taken more but it didn't make any difference to my stable dose. I think for me it is as good as it gets ☺️

jgelliss profile image
jgelliss in reply to endomad

Your T3 might be too much for you. Do you split your T3 dose during the day a few times? You might want to do a 24 hour adrenal/cortisol levels via saliva . It can help you with your T3 dosing's. Thyroid and adrenals work in unison.

endomad profile image
endomad in reply to jgelliss

My 4 point saliva test were all low, 8am blood test last done 2018 95 (150-550) i have 10mg hydrocortisone in mornings. Splitting t3 doesnt work for me, it leaves me hypo and unable to wake up, so i take it all at bedtime and it helps me sleep and able to get out of bed in the morning. Splitting it throughout the day leaves me with bone crushing fatigue and increased pain in my joints.

jgelliss profile image
jgelliss in reply to endomad

It's not one size fits all when it comes to thyroid dose and timing. It's important to see which way feels the best for us as individual thyroid patients. By different tries of thyroid meds dosing . Different timings of dosing make a huge difference how one feels ultimately. Keeping logs with each change I found helped /helps me very much.

endomad profile image
endomad in reply to jgelliss

Yes i have kept detailed journals for 8 years, meds plus timings, moods, food, supplements, sleep, temps, blood pressure, resting HB, stress etc.

It was this that lead me to realise that it takes 9 hours for my t3 to kick in, moving dose times trying the CT3M i was like death all day if i took on waking but awake at night, so i now take at bedtime, sleep well and find it easier to wake up. I have to get up right away as if i laze about i fall back to sleep really deeply and i am foggy all day :)

REMZ1 profile image
REMZ1

Hey Cade, i was diagnosed with hypothyroidism in 2018. I started on 25mcg of levo with 6 weekly blood tests until i got to 75mcg. I used to have panic attacks years ago but overcame them purely by working through them and training my brain i wasnt going to die. I started having really bad panic attacks again, much worse than id ever had years ago. I couldnt control them and they reduced me to a bag of mush in seconds. I spoke to my doctor and he sais that the panic attacks arent due to hypothyroidism because its hyperthyroidism that has symptoms of panic attacks. What he did say though was that hypothyroidism knocks the coping mechanism which interrupts your rational thinking. He tried to put me on sertraline but i refused because thats just treating the symptom and not dealing with the cause and i dont do meds unless i have to. So i went away with the thought that ive got to find a way of dealing with them, like i did years ago. I started searching the internet and came across a man called Barry Mcdonagh and his programme called Panic Away. There was a link on his site for a free download audio which helps you during a panic attack by teaching you to understand that the same chemical (adrenalin) that the body produces during times of being happy is the exact same chemical your body produces when your in fear. So the idea is that when you feel those panicky feelings you tell yourself over and over that you are EXCITED by this feeling. You repeat it over and over so that your brain is tricked into being excited instead of in fear. And during a panic attack think of something that your grateful for being in your life. In my case i concentrated on being grateful for my 2 new kittens and the happiness they brought me. To begin with i had to listen to the audio as i went through the panic to keep me focused and i put it on my fone as my panic attacks mostly came if i was on a bus etc so i had it on standby but ive got to say after a few listens during panic attacks my panic attacks were just undrr the surface but didnt break through. Id verbally acknowledge the 1st few bumps of my racing heart with a 'yep i know youre there' and then id start repeating 'im excited by this feeling'. I started deliberately putting myself in situations where panic would arise, my thought pattern being that of confronting and challenging the panic attack. Id make myself go out during a panic attack. This was to show myself that i wasnt going to be ruled or stopped by adrenalin. Over time they gradually disappeared. Every now and then i get the racing heart for a few moments, ill verbally acknowledge them and then they go.

What i would say that i noticed during my panic attack days was that as i began to get them under control i realised that they would break through just before, during or just after my period. Hormones!! I was perimenopausal at the time. Ive just recently gone into full menopause and around the 7th of most months i will get the familiar bumpy quickening heart beat even though i dont have the monthlys now. Im no doctor but considering the thyroid controls all the hormones etc i would say indirectly it is associated with the thyroid.

I think the key thing is to know the minds a powerful thing. But a panic attack is all a thought pattern. Ive had situations that cause me panic...ie buses, got to the point of controlling them so i dint get panic on a bus so instead my brain will put me into panic in a different situation instead. Almost like it knows it cant get me by bus travel anymore so it will decide to come in a till queue. Hence the reason why i always acknowledge them.

I dont know if the audio is still a free download but i would recommend having a look at the site i found.

Barry McDonagh

panicaway.com

I hope that can help

Cade83 profile image
Cade83 in reply to REMZ1

Hi REMZ, that’s really interesting what your doctor said about coping mechanisms and them being knocked out by hypothyroidism. Right now I feel like I’m back to square one with anxiety.

I just feel all over the place and it’s such an uncomfortable feeling. I hate taking tablets and I wouldn’t be taking sertraline if it wasn’t for the fact my anxiety was uncontrollable day in day out 4 years ago.

I’ve heard of Barry Mcdonagh, expensive if I remember. I’ll have a look at the link though thanks for that.

endomad profile image
endomad in reply to REMZ1

I will take a listen to that. I hadn't had a panic attack for years but had one driving 3 weeks ago, a journey I do several times a month, only 15 miles and I had to park up till it passed, I lose the feeling in my arms, face and mouth. After 5 mins I forced myself to carry on, I do not like face mask but I put it on and it helped slow my breathing like a paper bag. I am doing the same drive tomorrow so I have to watch that I don't connect panic or anxious thoughts to any situations.

Cade83 profile image
Cade83 in reply to REMZ1

Omg I had to burst out laughing when he says tell yourself your excited about panicking but I see the idea behind it.

Cade83 profile image
Cade83

I just spoke to my doctor and agreed to drop back down to 75mcg. Seems the most logical solution right now. I’ll get my vitamins checked as well privately.

Cade83 profile image
Cade83

Just an update, after 2 weeks of decreased dose I finally feel normal albeit a few more ectopic heartbeats than I’m used to. Still find I’m tiring quickly but I think I’d rather that than how I was feeling on 100mcgs. Thought I was going insane.

My results of my private blood tests as follows. These were taken only around a week on decreased dose.

TSH 0.34 mIU/L 0.27-4.2 mIU/L

FT3 4.47 pmol/L 3.1-6.8 pmol/L

FT4 16.6 pmol/L 12-22 pmol/L

T4 98.1 nmol/L 66-181 nmol/L

Active B12 >150 pmol/L 37.5-188 pmol/L

Folate 22.8 nmol/L 8.83-60.8 nmol/L

Ferritin 110 ug/L 30-400 ug/L

Vitamin D 87.7 nmol/L 50-175 nmol/L

Cholesterol 5.9 mmol/L 0-5.2 mmol/L

LDL 4.1 mmol/L 0-3.4 mmol/L

HDL 1.23 mmol/L 1-3.88 mmol/L

Triglycerides 1.02 mmol/L 0-2 mmol/L

I’ve tried getting my cholesterol down and unless I eat like a rabbit it’s hard to keep it under 5.4. Even doing exercise. Any suggestions would be much appreciated.

TIA

SlowDragon profile image
SlowDragonAdministrator in reply to Cade83

Ft4 is only 46% through range Ft3 only 37% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Most people on levothyroxine need Ft4 and Ft3 at least 50-60% through range

Anxiety is common hypothyroid symptom

High cholesterol is linked to being under medicated and will improve as dose is increased

If you find it too difficult to increase from 75mcg to 100mcg you need to increase in smaller steps

Eg 75mcg/100mcg alternate days

Or 75/75/100mcg - 75mcg two days, then 100mcg one day.

Get weekly pill dispenser so you know where you are

Do you always get same brand of levothyroxine

Many people find different brands are not interchangeable

Teva brand especially upsets many people

Important to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results (eg vitamin B complex)

Are you on absolutely strictly gluten free diet?

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