Daytime sleepiness, low heart rate, bloating.

[Cade83]

I’m really worried. I woke up this morning with a notification on my Apple Watch that my heart rate went below 40 for 10 mins. It was 39 but it’s never gone that low. I think the lowest is 43 and I’ve had the watch over a year and a half. The last month I’ve been constantly bloated and I keep falling asleep during the day. More so when I drive which is worrying. Maybe it’s a side effect of upping my sertraline a few months ago. Or maybe I need to up my levothyroxine. I’m now worried I’m gonna die in my sleep or during the day because I’m so exhausted, even my heart rate during the day has got a little lower. Like standing up it can still be as low as 59 at times. Can you die if your not on enough levothyroxine?

[SlowDragon Administrator]

How much levothyroxine are you currently taking

How long since dose was increased

Do you always get same brand levothyroxine at each prescription

When were thyroid and vitamin levels last tested

What vitamin supplements are you currently taking

[Cade83 in reply to SlowDragon]

I’m currently on 75mcg and the last 2 weeks I was taking TEVA even though it says on my prescription not TEVA however they didn’t have anything else and wouldn’t give me 25mcg tablets instead because I would of needed a new prescription 🙄 she was like make sure the dr puts no TEVA on your prescription and I showed her the prescription and she was like oh I’ll put it on your file so we know. It’s been probably over a year or 2 since an increase. I did try 100mcg but felt it was too much at the time but that was over a year ago.

Brands change between wockhardt, crescent and maybe some other one.

Levels last checked June I think their on previous post. There was a difference in Thriva and doctors results. Vitamins are ok apart from folate is low normal. I take 2000iu vitamin d3, 200mg magnesium citrate.

[SlowDragon Administrator in reply to Cade83]

75mcg is only one step up from starter dose

Likely to need further increase in levothyroxine after several months at 75mcg

How much do you weigh in kilo approx

Teva is the only brand that makes 75mcg tablets

request 2 new prescriptions from GP

Explain you have enormous difficulties getting anything other than Teva, therefore need a spare prescription in hand as it can take weeks to source different brand

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

[Cade83 in reply to SlowDragon]

I’m around 75kg. Out of curiosity what is the maximum dose of levothyroxine?

I normally get 50mcg and 25mcg tablets together not the 75mcg.

I’m seeing my gp tomorrow so I’ll ask maybe I should try 75mcg/100mcg alternate days? I’m just worried she’ll look at my blood test results and say I don’t need it.

[helvella Administrator in reply to Cade83]

Whilst doctors sometimes insist otherwise, there really is not maximum dose of levothyroxine. You need what you need.

200 micrograms is not common, but consider that the USA has 300 microgram tablets as regular product. They would not be made if no-one took them.

I have read of someone taking over 3,000 micrograms a day - without any indication of overdosing. That truly was exceptional.

[SlowDragon Administrator in reply to Cade83]

75kilo x 1.6mcg = 120mcg as likely dose of levothyroxine required each day

Often necessary to increase in smaller steps than 25mcg.

So increasing dose to 88.5mcg for at least 6-8 weeks before retesting

If GP won’t initially increase dose to 75mcg/100mcg alternate days

Request/insist on FULL Thyroid and vitamin testing

ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Being under medicated for thyroid is likely cause of needing anti depressants

ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12

Vitamin D should be tested twice year when supplementing

You will likely need to test via NHS postal kit

GP can only test vitamin D once every 2 years

Aiming for vitamin D at least around 100nmol

NHS test

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid disease we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Have you had coeliac blood test done

Or are you already on strictly gluten free diet

[Cade83 in reply to SlowDragon]

I shall talk to the doctor tomorrow. I’m worried about my stomach though as I’ve been in a lot of pain. Today when I passed a stool I had a line of fresh blood on it so I’m now freaking out about that. Can levothyroxine damage your stomach?

I always test as early as I can and I don’t take my levothyroxine until after the test.

My sertraline is more to do with anxiety but my mood keeps dropping massively and scarily at times.

I’ve had a coeliac test but it was quite a few years ago now. Could it change in that time?

[SlowDragon Administrator in reply to Cade83]

Only 5% of Hashimoto’s patients are coeliac

At least a further 80% find strictly gluten free diet helps or is essential

Being under medicated for thyroid results in low stomach acid, this leads to poor nutrient absorption and low vitamin levels

Anxiety is common hypothyroid symptom and usually improves as dose levothyroxine is increased

Constipation (and pikes as result) common with being under medicated

[Cade83 in reply to SlowDragon]

Oh great the doctor has just made me take omeprazole for 3 days until I see her to see if it will help. So that’s basically gonna make things even worse. I’ll get her to do a coeliac test. To be honest my mood is so low at the moment my diet has been terrible. I just haven’t the energy to cook and I get so frustrated with watching what I eat. I used to go in the supermarket and look for healthy things and I’d get so frustrated that I’d walk out with nothing.

So I’ll definitely ask about upping the dose and see but I’m so worried about the stomach pains I’m getting and the blood I had in my stool. Fingers crossed it’s because I was constipated.

[SlowDragon Administrator]

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more some less

healthunlocked.com/thyroidu...

You might need 100mcg 4 x week and 75mcg 3 days week or slight variation on this mix

[Cade83 in reply to SlowDragon]

So after talking to my doctor she said I don’t need to up my dose because my TSH is fine. I don’t understand why doctors only work on the results of TSH which is pointless without FT4 and FT3. I think everyone being treated for hypothyroidism or hashimotos should get those tested as well.

The up side is she’s doing a coeliac blood test and also stool sample to check for blood. Has also given me info for ibs. So will see what that comes back as.

[SlowDragon Administrator in reply to Cade83]

Print out those guidelines on levothyroxine dose by weight

Give them to GP and request she either follow guidelines and increase dose levothyroxine to 100mcg initially…..or you want referral to endocrinologist of your choice

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

[e-mail]

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one. Most important results are ALWAYS Ft3 followed by Ft4.

When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Come back with new post once you get thyroid and vitamin results

[tattybogle in reply to Cade83]

Show GP the article from GPonline (2010) ,in this post~ healthunlocked.com/thyroidu.... (gps-told-keep-tsh-0.5-2pmol-l-hypothyroidism-causes-raised-cholesterol-thyroid-disease-effects-on-heart-and-cardiovascular-system.) ~ It was written for GP's by specialist registrars in endocrinology and cardiology, and is advising them to get TSH between 0.5 and 2 .

Just because an increase to 100mcg previously felt too much doesn't mean you might not feel significantly better of you tried 87.5mcg (100/75 alternate days or add half a 25mcg tablet to 75mcg each day)

If you current TSH is above 1 there is absolutely no reason for GP to refuse a request to try a slightly higher dose.

I found 125mcg was a bit too much, they lowered it to 112.5mcg bur they still didn't like my blood levels so they then lowered it to 100mcg ... 100mcg left me chronically constipated so (after a bit of an argument) they increased prescription back to 112,5mcg and the constipation improved within a week. So just 12.5 mcg increase can ,make a significant difference to symptoms for some of us.

Also Re. TEVA even though i don't have any specific problems on taking it , i did found that after a week on it my previous 'va va voom' totally disappeared and i went from feeling "ooh ,where shall i drive to next in the car ?" to "can i just go home and lie down yet? "

To be honest . if i was in your position i'd just increase by 12.5mcg myself and then get re tested by GP after a couple of months. Tell the nurse at blood test you've increased dose to 87.5mcg and if TSH / fT4 are still within lab range there's not a lot they can say about it if you feel better than you do now. So that's the other way to get an increase .. try it first and ask permission later.

[CSMMUM]

Hi Cade83,My uncle had a very low heart rate and was fobbed off for a long time. Turned out he had an Ectopic heartbeat. I have no specialist advice but it may be something to ask your GP in case it’s not Thyroid related (or might be?). Good luck with finding an answer 😅

[Cade83 in reply to CSMMUM]

I do get ectopic heart beats. Not as many as I used to. Ectopic heart beats aren’t really anything to worry about unless your getting 1000’s a day as a lot of people have them and don’t actually know and as far as I know isn’t really associated with low heart rate they are separate. I’ve had monitors and echos and things are structurally fine.

It’s always frustrating though when you don’t have the answers. When you have the answers it’s easier to work with but when you don’t it just causes anxiety and makes you think all kinds of things. I’m even worried to go sleep tonight.

[Pearlteapot in reply to Cade83]

Hi Cade. What happened with your slow heart rate? Did it improve with an increase in Levo. I also got an apple notification that it went to 38 overnight and am now super anxious. Would like to know if yours improved

[Cade83 in reply to Pearlteapot]

Hi Pearlteapot, to be honest my heart rate has got worse, especially since I started exercising 9 weeks ago. I’m seeing my gp this week about it as they told be to record my bp as well. I’ll let you know how I get on. I know generally they say if you don’t have symptoms associated with low heart rate then it’s ok but I’m so tired all the time and at times feel lightheaded. Try not to worry though. Have you had your thyroid levels checked recently?

[Pearlteapot]

I’m having a massive BP spike and am in A&E now. It’s usually optimal 115/75 but has been 149/97 all evening. This has never happened to me before. Heart rate low at 49. Not really expecting A&E to do anything but I’m v freaked out.

[Cade83 in reply to Pearlteapot]

Awe no, I’m sorry to hear that. It’s not nice being in A&E I had to go couple weeks back as I was getting constant ectopic heart beats. To be honest 149/97 isn’t dangerously high. Freaking out can make it go that high. If it makes you feel a bit better mines 46 right now. Do you have any other symptoms other than the high bp and low heart rate?

[Pearlteapot in reply to Cade83]

Those are my heart behaviours. The other hypothyroidism symptoms mainly fatigue weight gain digestive issues swollen ankles. I’m assuming will improve as medication increases. But can’t understand why heart getting worse since I started medication rather than better. I picked up that you had the same issue. You increased your Levo and your hr didn’t improve but got worse. I saw some people suggested conversion problems. Is that what you’re seeing the GP about ?

[Cade83 in reply to Pearlteapot]

I would say they would get better with increase. Yeah I don’t get it either with the whole hr thing. It’s rather frustrating. I am going to ask about conversion as the last post I did people suggested that mine isn’t great. It’s mainly about my low hr and bp that I’m going to see them about.

[Cade83 in reply to Pearlteapot]

Hi I hope your ok, did they do anything for you? Did they say anything about your low heart rate? Only I’ve just got up to go to the gym and mine is like 41 so I’m like, do I go or not.

[Pearlteapot in reply to Cade83]

By 2am I was too tired so walked home without seeing a doctor. On exercise, medical advice would be welcome. My attitude is that with a RHR 46 or above I’m good to go but warm up cautiously in case I get palpitations (I’ve never had palpitations). Below that I freak out but I’m not sure that’s medically sound. Until my medication, T3 etc is in the right place and HR rises a bit I’m only doing walking swimming and yoga. I wouldn’t be comfortable with explosive exercise or running.

Did you go and how was it? Apple Watch and other hr monitors are a menace for anxious folk like us. A real Pandora’s box.

Btw, like you my HR went down 10 bpm when I stopped drinking and smoking. Has gone down another 5 since diagnosis and starting medication.

Please report back on what your doctor says.

[Cade83 in reply to Pearlteapot]

Fair one, how is your bp now? Hopefully down a bit. I find being in A&E makes it higher. I just spoke to my surgeries reception and I have to wait until Monday for a face to face appointment because their shit Thursday and Friday because of the jubilee 😂 I thought ffs are you for real. So will have to wait until then unless I go A&E. I really don’t know what to do about exercise now. Like I don’t want to stop because it’s taken me 10 years to build the courage to start again after I was discharged from the army and was getting heart problems just before I left. In a way yes apple watches really are a Pandora’s box for health anxiety sufferers but on the other hand they do save peoples lives so it’s a catch 22 really. I’ll let you know what the dr says when I see them.

[Pearlteapot in reply to Cade83]

I would exercise but nothing explosive so you have the opportunity to dial back if it feels too intense. What do you like to do in the gym? Eg. I think weight machines would be okay.

[Cade83 in reply to Pearlteapot]

Well I was doing 5 mins on cross trainer to warm up but 2 weeks ago it brought on constant ectopics for about 20 mins and went a&e and since then I’ve skipped the warm up and just do weights. I’ve also just started doing Muay Thai once a week and that really gets my hr going. Can’t check it though as I don’t wear my watch cause of gloves. At one point it did start ectopics but they went quite quickly. So frustrating though.

[Pearlteapot]

I wake up v tired. Suspect sleep apnea maybe. Can’t tell if tiredness is due to low HR or under medication.

[Cade83 in reply to Pearlteapot]

Why do you suspect sleep apnea? Do you wake up catching your breath or anything? I always think my low HR causes my tiredness. I do wonder whether to up my levo again but my TSH now is 0.44 so if I were to go up I’ll likely go out of range. It’s frustrating trying to figure things out.

[Pearlteapot]

No I don’t wake up catching breath and I’m not obese. But 10 minute period of v low heart rate 38-39 as we both had, could mean temporary hypoxia from sleep apnea or so I read. Also it’s v common in hypothyroidism apparently. In short, I have no idea.

[Cade83 in reply to Pearlteapot]

Huh I never knew that. Sleep apnea is probably hard to diagnose I guess unless you have a sleep study done. I did think about sleep apnea but I’ve never woke up catching my breath so I figured I didn’t have it.