On 100mcg Levo keep waking at 4am heart rate ha... - Thyroid UK

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On 100mcg Levo keep waking at 4am heart rate has increased.

ockerdoc profile image
44 Replies

I’ve been on 100mcg for nearly 6 weeks now. I’ve been taking melatonin for about 3 months and sleeping well but I’ve stopped taking it as I’ve been reading it can lower your Testosterone levels. Felt fine stopping was sleeping ok for a week but gradually my resting heart rate has gone from late 40s to late 50s and I keep waking at 4am bang on it’s really weird. I’m writing this at 04.56 wide awake and start work at 8am 🙄 I’m gonna buy some night nurse today but I can’t take that forever. I just don’t know what’s causing it. I’m due to retest in a week or so. It’s a nightmare not sleeping properly I just want to chuck my Levo in the bin it’s not helping me at all !!

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44 Replies
greygoose profile image
greygoose

I doubt if it's the levo causing th problem. Sounds more like a cortisol problem. Have you ever had that tested?

ockerdoc profile image
ockerdoc in reply to greygoose

Yes it was 413nmol (132-557)

greygoose profile image
greygoose in reply to ockerdoc

When was that?

greygoose profile image
greygoose

According to this, melatonin increase testosterone, not decrease it:

Studies have shown that melatonin can have a positive impact on testosterone levels by increasing its secretion in the body. It is believed that the relationship between melatonin and testosterone is bi-directional, meaning that an increase in one hormone leads to an increase in the other.

afdil.com/blog/melatonin-an....

The melatonin is probably better for you than the Night Nurse which is basically for coughs and colds, not sleeping problems. :)

ockerdoc profile image
ockerdoc in reply to greygoose

rbmojournal.com/article/S14...

Thank you that’s interesting. There seems to be conflicting information on this as the above article said it’s inhibited. I think when I do my test next week I’ll test my testosterone then take the melatonin for a few months and then retest and see if the levels have changed.

greygoose profile image
greygoose in reply to ockerdoc

That sounds like a very good idea. :)

HealthStarDust profile image
HealthStarDust

May I ask which brand you are using? Also, it’s only six weeks so the dose could just need time to settle still.

I believe as we are nearing our optimum dose, time is more of a help than hindrance.

ockerdoc profile image
ockerdoc in reply to HealthStarDust

Thank you yes I take Synthroid which is supposed to be one of the cleanest forms of Levo. I think by the time I test it will have been around 2 months on 100mcg. Hopefully I’ll know a bit more when I test.

HealthStarDust profile image
HealthStarDust in reply to ockerdoc

Synthroid… I didn’t realise you could get this from the UK. I hope it gets better for you. I think I may be moving to 100mcg soon. We’ll see.

ockerdoc profile image
ockerdoc in reply to HealthStarDust

That’s good I hope the 100mcg helps.

HealthStarDust profile image
HealthStarDust in reply to ockerdoc

I’m still confused. Isn’t Synthroid from USA and your in UK???

Batty1 profile image
Batty1 in reply to HealthStarDust

It’s a US drug

HealthStarDust profile image
HealthStarDust in reply to Batty1

And ockerdoc is UK based. So am I confused. Can it be imported or something?

Batty1 profile image
Batty1 in reply to HealthStarDust

I don’t believe Synthroid is available in the UK it’s a U.S. thyroid drug….He will be the only one to answer where he gets Synthroid from.

ockerdoc profile image
ockerdoc in reply to HealthStarDust

Hi yes I get it from an online pharmacy.

RedApple profile image
RedAppleAdministrator in reply to ockerdoc

Synthroid which is supposed to be one of the cleanest forms of Levo'

What on earth makes you think that? Clever marketing I suppose. What exactly do you mean by 'clean'?

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

The excipients are:

Each SYNTHROID tablet contains the inactive ingredients acacia, confectioner's sugar (contains corn starch), lactose monohydrate, magnesium stearate, povidone, and talc.

Plus colourants.

rxabbvie.com/pdf/synthroid.pdf

WitchingHour2point0 profile image
WitchingHour2point0 in reply to helvella

Talc? As in talcum powder?? Surely not! 😲

Lalatoot profile image
Lalatoot in reply to WitchingHour2point0

Talc is a mineral.

WitchingHour2point0 profile image
WitchingHour2point0 in reply to Lalatoot

Oh thank god! 🤣

helvella profile image
helvellaAdministratorThyroid UK in reply to WitchingHour2point0

Even talc doesn't contain talc!

Well, some of it.

Johnson & Johnson to replace talc-based powder with cornstarch

Johnson & Johnson (J&J) will stop making and selling its talc-based baby powder around the world from next year.

The announcement comes more than two years after the healthcare giant ended sales of the product in the US.

J&J faces tens of thousands of lawsuits from women who allege its talcum powder contained asbestos and caused them to develop ovarian cancer.

But the company reiterated its view that decades of independent research shows the product is safe to use.

"As part of a worldwide portfolio assessment, we have made the commercial decision to transition to an all cornstarch-based baby powder portfolio," it said in a statement.

The firm added that cornstarch-based baby powder is already sold in countries around the world.

At the same time J&J reiterated its position that its baby powder is safe to use: "Our position on the safety of our cosmetic talc remains unchanged."

"We stand firmly behind the decades of independent scientific analysis by medical experts around the world that confirms talc-based Johnson's baby powder is safe, does not contain asbestos, and does not cause cancer," it said.

Rest of article here:

bbc.co.uk/news/business-625...

WitchingHour2point0 profile image
WitchingHour2point0 in reply to helvella

Whatever it's made of it's fab for getting sand off damp toes! :D

Thanks for the speedy lesson; I was pretty close to unpacking the soap box about the morally bankrupt Big Pharma. 😂

helvella profile image
helvellaAdministratorThyroid UK in reply to WitchingHour2point0

But Synthroid does contain talc! Genuine talc. Thanks AbbVie.

And acacia many spend their time trying to avoid. And aluminium-based colouring agents (except 50 microgram dosage).

Get that soap box unpacked...

WitchingHour2point0 profile image
WitchingHour2point0 in reply to helvella

It blows my mind. Really truly. How on earth can they get away with it!? 😮

jgelliss profile image
jgelliss in reply to helvella

Hello Helvella. This interests me very much. When I see Talc as a filler in one of thyroid meds. What is Talc in reality? And does it have any known side effects?Thank you in advance.

ockerdoc profile image
ockerdoc in reply to RedApple

To be honest when I chose it it seemed to be the most well tolerated when looking online. It doesn’t have mannitol. When I swapped over to it I felt an immediate difference. But who knows I’m not getting on particularly well with it anymore!!

RedApple profile image
RedAppleAdministrator in reply to ockerdoc

Are you in the UK (as indicated in your bio)? If yes, are you buying your own?(Synthroid isn't prescribed in the UK)

ockerdoc profile image
ockerdoc in reply to RedApple

Yes I’m in the uk but took over my own treatment as my GP wouldn’t raise my dose so I have order internationally.

RedApple profile image
RedAppleAdministrator in reply to ockerdoc

ockerdoc,

As you're self medicating, it would be a good idea to get your TSH, FT4 and FT3 tested as soon as you can, before making any further changes to your dose and/or brand of levo.

ockerdoc profile image
ockerdoc in reply to RedApple

Thank you yes I’m due a test over the next few weeks so will see how my levels are then decide from there.

Batty1 profile image
Batty1 in reply to ockerdoc

Synthroid is no cleaner than any other thyroid medication they all have extra stuff in them …. Helvella has extensive list of inactive ingredients in thyroid pills …. Synthroid was my nightmare with Acacia.

jgelliss profile image
jgelliss in reply to Batty1

For sure for me. Synthroid did not Work well for me.It caused me palpitations. Not fun.Wish the thyroid manufacturers would be more sensitive when it comes to eliminating filler that can work against us.

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine

Do you take your levothyroxine in morning or bedtime

Or have you tried splitting your dose….half waking and half at bedtime

What vitamin supplements are you taking

Magnesium helps with sleep……take afternoon or evening at least 4 hours away from levothyroxine

ockerdoc profile image
ockerdoc in reply to SlowDragon

Synthroid and I take it in the middle of the night when I wake up usually around 5am. I take b12 Vit d folate and magnesium glycinate twice a day.

SlowDragon profile image
SlowDragonAdministrator in reply to ockerdoc

Try taking half the dose of synthroid at bedtime

ockerdoc profile image
ockerdoc in reply to SlowDragon

Will do thank you 🙏

TiggerMe profile image
TiggerMe

I think 4am wake up is the classic sign of low cortisol as the body gives you a shot of adrenaline to make up for it.

Your serum blood cortisol looks ok but it might be that your actual free cortisol is much lower... hence we use the saliva testing

ockerdoc profile image
ockerdoc in reply to TiggerMe

Thanks for that maybe I’ll try the saliva test then.

TiggerMe profile image
TiggerMe in reply to ockerdoc

There is a tie up between fT3 and cortisol which is one of the dosing methods that works well for some...

paulrobinsonthyroid.com/t3-...

I've been taking my T3/4 around 4-6am to try and help my adrenals

I realize you're not taking T3 but it will be interesting to see your next results, we don't yet know if you are a good enough converter

helvella profile image
helvellaAdministratorThyroid UK

I know there are several Night Nurse products, but do check their ingredients:

Active ingredients Each 20 ml dose contains Paracetamol

1000 mg, Promethazine Hydrochloride 20 mg,

Dextromethorphan Hydrobromide 15 mg.

Other ingredients Liquid glucose, ethanol (alcohol),

macrogol 300, sodium cyclamate, acesulfame K, sodium

citrate, ascorbic acid, disodium edentate, medicated flavour

liquid, colours quinoline yellow (E 104) and patent blue V

(E 131) and water

mhraproducts4853.blob.core....

Juliet_22 profile image
Juliet_22

I've made many posts about it here as had the same problem on levo 100 mcg (increased from 75 mcg due to a raise TSH level). It was ok for a few weeks and then I started to have high pulse as well, couldn't sleep at night had high BP and went to A&E 8 times!

Definitely check your cortisol via 8-9am blood cortisol test and 4 point adrenal saliva test. Mine was high on 2 points during the day.

I had to drop my meds, struggled with hypo symptoms on a lower dose, struggled to increase without bad reactions (even to 88 mcg, even alternating and not doing 88 mcg every day), struggled with severe anxiety and panic attacks, this went on for MONTHS. I couldn't work, drive, lost income, and was basically just breathing all day to ensure I won't trigger my pulse and BP. I later learnt that other people on this forum had a similar issue. If you read my previous posts, you'll see their stories too.

I tried endless supplements to help with adrenals, thyroid, etc. The ONLY thing that worked in the end was moving back to a warm, sunny climate where my thyroid always worked well. I was then finally able increase my meds without problems and start feeling like myself again, though that took a few weeks again to achieve.

My only explanation to my situation is the light and sunlight. In the warm climates you get plenty of it, so adrenals can function better. I took dozens of adrenal supplements in UK and none of them worked to change the situation, seen other experts and endos, tried T3 (made things SO much worst for me!) tried NDT (made a post about it, worked for a bit better than other things, but then stopped working and started to make things worst - like my neck swelling, elevated pulse and BP again), tried all kinds of things.

The only thing that worked for me in the end was moving to a sunny country, along with my whole family relocating.

ockerdoc profile image
ockerdoc in reply to Juliet_22

Thank you for your comment I really appreciate it and if I could move to a hot country I definitely would!! 😆 I plan to retire to Spain but not for another 15 years unfortunately. Yes my blood pressure has gone up aswell from 120/70 to 140/95. I feel very much more aware of my heart beat right now I suppose you could say mild palpitations especially in bed at night. My resting heart rate has gone from late 40s to being mid 60s over the last week. I know that’s probably classed as normal still so I’m not too concerned but obviously the medication seems to be doing something now because even on 75mcg it didn’t move from late 40s. My T3 was at 54% on 75mcg so I know I’m not over-medicated on 100mcg I’m just hoping it’s my body reacting to having the highest T3 that I’ve probably had for years ! I’m due a test over the next few weeks so I’ll see what my levels are like. I don’t feel any different energy wise though. I’ve been waiting for this burst of energy but it just hasn’t appeared! 🙄 thanks again.

Juliet_22 profile image
Juliet_22 in reply to ockerdoc

I hope you'll find a way to make it work, I know it's not easy at all! Perhaps a sun lamp can help in this situation too. Hopefully your body will adjust, otherwise, perhaps consider doing it slower and alternating doses, or try 88 mcg daily first.

ockerdoc profile image
ockerdoc in reply to Juliet_22

Thank you yes I’ll see what my levels are next week and see how the symptoms are and take it from there.

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