QUEEZY NEWBIE ON HER LEVOTHYROXINE : Hi all! I... - Thyroid UK

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QUEEZY NEWBIE ON HER LEVOTHYROXINE

BetterDayzAhead profile image
15 Replies

Hi all!

I was wondering if I could get some information on feeling queezy on levothyroxine.

After dipping under the T4 range, in and out for 3 years, I finally got my GP to prescribe low dose Thyroxine 25mcg, based on my symptoms.

I'm on day two and have noticed I feel queezy after taking it and this morning my stomach shot off some pains.

What was most worrying though is I had a big resurgence of my sleep apnoea lady night and woke several times with my breathing affected and feeling like my heart had stopped. I dont know if thyroid issues are linked to sleep disturbances? Last night was frequent and very daunting at the time trying to regain breath and composure. This has been happening to me for years, since I was a teen and I'm 42 so it's not new to me.

I add that my thyroid when it pulled back up went to from 10.4 to 13.9 (12-24) T4 and the TSH 2.6 to 3.4 (0.4-6) yet I have many thyroid symptoms including tinnitus (just saw a few recent posts) My sensitivity to sunlight seemed better on day 1 of levothyroxine.

I was put on folic acid for low ferritin (barely low) I've taken a weeks worth.

Ive taken the Levothyroxine on it's own before any food, at least l 1/2 hour to 40 mins.

Any advice or feedback very welcome.

The rest of my vitamins and minerals tested were in the good range.

Test printedout by GP's reception did not include ranges so I took them over the phone.

Thank you in advance.

Katie.

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15 Replies
SeasideSusie profile image
SeasideSusieRemembering

BetterDayzAhead

What brand of Levo are you taking? If it's Teva then that brand has caused adverse reactions in many members. If it's Northstar 25mcg then that is made by Teva so will the the same tablet.

If it is Teva or Northstar 25mcg (Northstar 50mcg and 100mcg are made by a different company) then tell your GP and ask for a new prescription. You could discuss with your pharmacist but they wont be able to issue more tablets without a new prescription.

I was put on folic acid for low ferritin (barely low) I've taken a weeks worth.

You wouldn't be given folic acid for low ferritin. Ferritin is iron. You'd be given folic acid for low folate level, folate is a B vitamin.

You should take your Levo 2 hours away from any other medication and supplements (some need 4 hours).

pandacat2 profile image
pandacat2

Are you drinking much water with your levo? I've found increasing the amount of water helps with some stomach issues (i don't feel sick but it i do get a stomach ache sometimes) but as SeasideSusie says fillers in the medication may not agree with you

SlowDragon profile image
SlowDragonAdministrator

Taking levothyroxine at bedtime can give better results

Must be on empty stomach and then nothing apart from water for at least an hour after

How old are you approx

Standard starter dose of levothyroxine is 50mcg, unless over 60

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Likely to need several further increases in levothyroxine over coming months

SlowDragon profile image
SlowDragonAdministrator

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

Did you get thyroid antibodies tested

BetterDayzAhead profile image
BetterDayzAhead in reply toSlowDragon

Thank you slow dragon I will make the switch to night time. I've had very bad diharea this morning after the stomach cramps. The GPs reception printed test results and antibodies were minimal, very low (sorry print out is in hubbys car)

Lots of burping and nausea happening here :(

I checked its 25mcg dose so yes, likely to require more.

Would you know when I could start to feel a lift in energy please?

BetterDayzAhead profile image
BetterDayzAhead in reply toBetterDayzAhead

He read out ferritin as under but it was minimally under. Sorry the print out is in hubbys car. All other values were within normal. I'm 42. I'm in Surgical Menopause 3.5 years now and have Gel Estrogen as my HRT.

I've went out of range 10.3 out if (11-22) T4 at least three blood tests though they eouldnt treating previous as it got back up into 12 or 13 level when retested. I've been pushing for Levothyroxine for 3 years. Multitude of symptoms.

SlowDragon profile image
SlowDragonAdministrator in reply toBetterDayzAhead

Which brand of levothyroxine of levothyroxine is it

Many people find different brands are not interchangeable

Teva brand upsets many people, though if lactose intolerant, it’s frequently by far best option as is lactose free

What’s your diet like ….eg are you vegetarian or vegan ?

Do you suspect lactose intolerance or gluten intolerance

Starting on such small dose can make symptoms worse initially

Burping is likely due to low stomach acid and poor gut function….extremely common when hypothyroid as we get low stomach acid, this leads to poor nutrient absorption and low vitamins as direct result

Come back with new post once you get results out of husband’s car

We need OPTIMAL vitamin levels

Ferritin and folate at least half way through range

Serum B12 over 500

Vitamin D at least around 100nmol

Very common to need to supplement to improve

But always get tested first

Your legally entitled to copies of your blood test results and ranges

Easiest way is to register for online access to your medical records and blood test results…..assuming your surgery offers this

In theory all surgery’s should offer access since 2016 ….in practice many don’t yet

Always keep good records of how you feel at each dose

Always get actual results and ranges after each test

Spreadsheet with results over time can help see trends in levels

Retest 6-8 weeks after each dose increase

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

BetterDayzAhead profile image
BetterDayzAhead in reply toSlowDragon

That's Brill advice thank you so going by my ferrotin I'd be low there.I will get the rest of the results posted up later on today :)

I've pouded the porcelain

"Wokhardt" POM is the Levothyroxine branding and sais it contains lactose.

I am not celiac, I am not gluten sensitive either. I am fine with dairy and dont particularly have foods to avoid, unknown to any allergies; Yet I've been having problems enjoying a glass of wine I feel like its metabolizing differently and I feel "edgy" and I often get awful diharea the next day on alcohol and yellow stools, so have been avoiding alcohol completely.

I am an Endometriosis sufferer and fo feel a recurrence of bowel Endometriosis. I'm pathologically diagnosed post Operatively with extensive bowel and urinary/Pelvic Endometriosis and of the rectum, I have no feminine organs left at all. Diharea may be the Endometriosis reocurring.

I tested negative for ANCA and anti nuclear antibodies.

I've been feeling very sick for a very long time and my husband has recently had to come out of work to do the minimum hours possible as we went to universal credit benefits, he needs to look after my 7yr old son and I who are both disabled.

I have lost alot of my mobility and

Rely on mobility aids.

This 25mcg of Levothyroxine is hopefully a starting point for me.

I've even been hiding from that grey daylight as it's been hurting my eyes yet I'm great in the sun.

Recurrence of mouth ulcers are woeful.

I've just saw my June 24th blood test had level of 'Active B12'as 57 on range of (25.1 to 165.)

I guess this is in the lower parameters?

SlowDragon profile image
SlowDragonAdministrator in reply toBetterDayzAhead

Endometriosis and autoimmune thyroid disease (Hashimoto’s) often go together

So it’s important to test thyroid antibodies

Only change one thing at a time

So adding one supplement, or changing dose or brand of levothyroxine

Otherwise you can’t see what’s causing issues or improvements

Presumably folate result was below range as GP prescribed folic acid

Once you finish folic acid prescription

Suggest supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B is a recommended option that contains folate, but is large capsule. You can tip powder out if can’t swallow capsule

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

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...

Yes active B12 below 70 is likely inadequate

Low B12 symptoms

b12deficiency.info/signs-an...

If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply toBetterDayzAhead

Wockhardt is often well tolerated (unless lactose intolerant)

But be aware they only make 25mcg tablets

So when you get next increase to 50mcg you will either need to change brand or get 2 x 25mcg tablets

Presumably you have had full private testing done as you have an active B12 result

What were thyroid antibodies results

SlowDragon profile image
SlowDragonAdministrator

Once you find a brand levothyroxine that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands

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.

healthunlocked.com/thyroidu...

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).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

BetterDayzAhead profile image
BetterDayzAhead in reply toSlowDragon

Thank you so much for all that information. I will get the print out from my hubbys car when he returns from work, just incase there are other values in there like TPO etc. I had 1 Private test on June 24th with a Consultant who was looking at general bloods and the Thyroid TSH and T4 were on there as 2.39 (0.27 - 4.2) and 10.3 on (12-22) free B12, 57 of (25.1 - 165)

No other Vitamis. Blood cells, red and white profiles were normal and no anti nuclear antibodies or ANCA. Getting these results followed up took several attempts with GP.

I currently take no supplements just this folic acid that's been a weeks worth now and the 25mg Levothyroxine.

I've been pretty bad with diharea today and believe this is probably the Endometriosis. It is a fortnight since the last bout and that's been presenting as a pattern.

I will take Levothyroxine at night.

Currently on no other supplements.

Thank you

Katie x

SlowDragon profile image
SlowDragonAdministrator

Once you find a brand levothyroxine that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands

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.

healthunlocked.com/thyroidu...

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).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Hay2016 profile image
Hay2016

My sister can’t tolerate folic acid as it causes her bowel issues and nausea. It’s tricky when trying to narrow down cause of feeling yuck.

Divine1990 profile image
Divine1990

I had terrible nausea but when I switched from Folic acid to Methylfolate this really helped.

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