Side effects of thyroxine: Hi there, please could... - Thyroid UK

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Side effects of thyroxine

Cat-222 profile image
27 Replies

Hi there, please could anyone give me some advice. Can thyroxine have side effects? I am scared, I am having palpitations where I can hear my heart beat in my left ear which is worse when I lie down. I get a lot of indigestion and belch a lot. At night I have episodes where my heart beats fast and I can feel it in my tummy area which is worse if I eat late. I am on 75mg thyroxine, which I cut down slightly a few weeks ago but increased it again. My TSH is 0.85.

My blood pressure is up and down and has a tendency to be high if I am stressed.

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Cat-222
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27 Replies
Haribeau profile image
Haribeau

Speak to your doctor. My dosage was reduced when this happened to me.

Cat-222 profile image
Cat-222 in reply toHaribeau

Thank you for your reply . Did you feel better once you lowered your dosage?

I have been on thyroxine for 12 years and it’s not been this bad before. It’s pretty scary and getting worse.

Mollyfan profile image
Mollyfan in reply toCat-222

This happened to me and appeared to be due to a low T3 rather than a high T4 because my conversion was poor. I would suggest that you get a full thyroid blood test done showing TSH, T4, T3, and ferritin, folate, B12 and vit D to see exactly what is going on.

Cat-222 profile image
Cat-222 in reply toMollyfan

Hi, thank you for your reply. My T3 was low 3.6 and my T4 was 19. I had the blood tests done privately and told my doctor but they didn’t want to know.

My ferritin, B12 and vit D are all good, my folate was at the lower end of the range.

Mollyfan profile image
Mollyfan in reply toCat-222

my folate was below range, so we seem to be similar! Personally I would go back to the GP and talk about the conversion issues again. Sadly, a lot of GPS don’t really understand. Ask for a referral to a thyroid friendly endocrinologist for a trial of T3. If this GP will not help, try another one!

SlowDragon profile image
SlowDragonAdministrator in reply toCat-222

What exactly were vitamin results

What vitamin supplements are you now taking

Haribeau profile image
Haribeau in reply toCat-222

yes I halved my dosage during covid (have been on medication for nearly 30 years) blood test numbers all good and I feel exactly as I did before.

BiscuitBaby profile image
BiscuitBaby

Hi Cat-222What brand are you taking? I had similar issues to you when I was given teva. My heart rate went up and I had a dodgy tummy. Many people don't tolerate teva.

Cat-222 profile image
Cat-222 in reply toBiscuitBaby

I have 25mg Mercury and 75mg Alma

SlowDragon profile image
SlowDragonAdministrator

75mcg is only one step up from starter dose

How long have you been left on just 75mcg

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Approx how much do you weigh in kilo

If been left under medicated a long time, you are likely to have low vitamin levels

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

Obviously just testing TSH is completely inadequate

Get FULL thyroid and vitamin testing done 6-8 weeks after being on constant unchanging dose and brand of levothyroxine

ALWAYS test early morning and last dose levothyroxine 24 hours before test

About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s, usually diagnosed by high TPO or high TG antibodies……have you had both thyroid antibodies tested?

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

currently on offer at £68

Medichecks Thyroid plus both antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

thyroiduk.org/getting-a-dia...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Cat-222 profile image
Cat-222

I have been on 75mg for 12 years and always take the same brand 25mg Mercury and 50mg Alma.

My vitamins were tested in November because I am seeing a Neurologist for numbness.

I currently take vitamin D and K2, Probiotics, vitamin C, Zinc and sometimes Selenium and Omega 3.

Last time I did private blood tests my T3 was low and my T4 was high, I told the GP but they didn’t want to know so what’s the point of paying out for these tests?

My antibodies were fine.

I am due to have an endoscopy on Thursday for my indigestion and have been referred to a cardiologist for my palpitations and dizzy spells.

This is really getting me down and I am very scared as to what’s going on.

Many thanks 😊

SlowDragon profile image
SlowDragonAdministrator in reply toCat-222

Indigestion is frequently acid reflux caused by ,inadequate dose levothyroxine and/or low Ft3

Clearly your Ft3 is terrible

What were actual vitamin results and ranges for folate, B12, vitamin D and ferritin

Many thyroid patients need to supplement vitamin B complex (and initially separate B12) to maintain OPTIMAL B12 and folate

How much vitamin D are you currently taking

Approx how much do you weigh in kilo

Unless very petite, most people will need to be on at least 100mcg levothyroxine per day

Cat-222 profile image
Cat-222 in reply toSlowDragon

my FT3 was 3.6.

Ferritin range was 15 - 200ug/l

result was 84

Folate range was 3 - 20ug/l

result was 3.6

B12 range 0.35 - 640

Result 534

TSH range 0.35 - 4.94

Results 0.85

(Which is low, I was told by the Thyroid Foundation I could becoming hyperthyroid and was told I need to lower my thyroxine so I am totally confused)

I weigh 12 stone.

Sorry I forgot I do take B Complex which is the Biocare one in liquid form.

I currently take a 1,000mg vitamin D with K2

Many thanks for your help. I really appreciate it.

SlowDragon profile image
SlowDragonAdministrator in reply toCat-222

Folate is far too low obviously

Had you been taking B complex before this test ?

Looking at website….4 drops per day

You don’t need to stop this before blood test as doesn’t contain biotin

biocare.co.uk/nutrisorbr-li...

When was vitamin D last tested

1000iu might not be enough

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

Cat-222 profile image
Cat-222 in reply toSlowDragon

yes I have been taking B complex for a while now 4 drops a day. I am on my fourth bottle.

Vitamin D was tested in November and it was 96 sorry I don’t know what the range was.

SlowDragon profile image
SlowDragonAdministrator in reply toCat-222

so that vitamin B complex seems pretty useless then

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules.

(You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20 

If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement

amazon.co.uk/Yipmai-Liposom...

or available as Vitablossom brand here

hempoutlet.co.uk/vitablosso... &description=true

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement eg Jarrow methyl folate 400mcg

Cat-222 profile image
Cat-222 in reply toSlowDragon

Thank you. I have just brought a new bottle so will buy the separate Folate for now.

SlowDragon profile image
SlowDragonAdministrator in reply toCat-222

You’re almost certainly not on high enough dose levothyroxine

12 stone = 76kg

76kg x 1.6mcg = 121mcg as likely daily dose levothyroxine

Suggest you request increase in levothyroxine to 87.5mcg daily

Cutting a Almus /Accord tablet into 1/4s to increase by 12.5mcg daily

You can use pill cutter or sharp craft scalpel

Use a weekly pill dispenser to keep spare 1/4’s in

Retest in 6-8 weeks

Likely to be able to increase to 100mcg daily after that

Probably take 6-8 months to slowly increase levothyroxine up to 112.5mcg per day

See if Ft3 improves once on full replacement dose

If Ft3 remains low then look at getting T3 prescribed

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 if clinically appropriate 

tukadmin@thyroiduk.org

SlowDragon profile image
SlowDragonAdministrator in reply toCat-222

TSH 0.85 (range 0.35 - 4.94)

TSH is nowhere near too low

Many people when adequately treated will have below range TSH or suppressed

It’s largely irrelevant. Most important results are always Ft3 followed by Ft4

Ideally looking for Ft3 at least 60-70% through range and Ft4 within range

T4 therapy

ncbi.nlm.nih.gov/labs/pmc/a...

In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

TSH should be under 2 as an absolute maximum when on levothyroxine 

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

 

sps.nhs.uk/wp-content/uploa...

Page 9 

Test for Deficiency of any of the following: Vitamin B12, Folate,  Vitamin D, Iron

See page 13 

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

see reply by Diogenes on this post

healthunlocked.com/thyroidu...

the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing

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

Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.

If T3 is added alongside levothyroxine it’s extremely common for TSH to be 0.01 or lower

Anthea55 profile image
Anthea55

What is Alma? It's not a brand of thyroxine that I've heard of in the UK.

helvella profile image
helvellaAdministrator in reply toAnthea55

I read it as a typo for Almus. (Which is the own brand supplier part of Walgreen Boots Alliance. And the product is by Accord.)

Anthea55 profile image
Anthea55 in reply tohelvella

Yes of course! Thanks

Cat-222 profile image
Cat-222 in reply toAnthea55

sorry my mistake it is Almus

humanbean profile image
humanbean

I am having palpitations where I can hear my heart beat in my left ear which is worse when I lie down.

Hearing the heartbeat in your ear is a condition called "pulsatile tinnitus". It's always easier to research something when you know the name of it. :)

I am scared

I don't know if you are afraid because of the tinnitus or whether you are afraid of thyroid hormones. If it is the hormones please read this link - it should make you feel better :

healthunlocked.com/thyroidu...

I would suggest that you start keeping records of which makes of thyroid hormones you are taking, what dose you are taking, and try a few different makes. Although the active ingredient in Levo is always the same the inactive ingredients known as fillers and/or excipients do differ from one make to another. Some people react to certain excipients. A few of them that cause problems for some people are lactose, acacia and mannitol. There are others.

See  helvella 's blog for more info on which products are available and what excipents they have :

helvella.blogspot.com/p/hel...

crimple profile image
crimple

Ca-222 I suffered from pulsatile tinnitus and it went once I got some T3 as I was a poor converter, low T3, mid range T4. I also used to have palpitations when undermedicated, they went too once on T3. Sending you for endoscopy and cardiology testing , in my opinion, shows how NHS spends money unneccessarily. You need an Endocrinologist. make sure you get the TUK list of recommended ones, good luck

Lulu2607 profile image
Lulu2607

Hi Cat. I agree with others that you're probably slightly overmedicated. It may be a temporary thing, particularly if you've had covid or a virus which my Dr told me can affect the thyroid in those of us who are autoimmune thyroid and may mean a dose adjustment up and down for a while. I have been struggling with similar symptoms for a while and I'm due to have another TFT set of tests soon to see if I need to lower my dose now. Tempting though it is to start adjusting the dose yourself it's best to keep it settled and get the levels tested more regularly for a while as it may be a blip.

arTistapple profile image
arTistapple

I have had pulsatile tinnitus since starting 100mcg of levo (over a year since). It does drive me mad sometimes and off course if you have not experienced it before, it is frightening. I recently started T3 and I believe I am getting periods of ‘quiet’. Anyway before this I used a white noise machine which was helpful but not always. My experience of hypothyroidism has made me even more introspective than my usual; meaning I am not always open to distraction. Distraction is the best first aid. Also lift your ear off the pillow at night by adjusting your hand to take ‘the weight’ of your ear. I am all for trying alternative interventions where at all possible. Obviously take on board all thyroid advice given here and Good Luck!

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