Mercury Pharma Levothyroxine ingredients - Thyroid UK

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Mercury Pharma Levothyroxine ingredients

PinkCat2023 profile image
58 Replies

Would anyone know if the ingredients of Mercury Pharma’s Levothyroxine have changed at all of the past few years? I’ve been taking 25 mcg for a few years now, always the same brand. I’ve been experiencing severe bloating and heartburn. Doctors can’t find the cause so I’m looking into a potential change in ingredients / fillers.

Current ingredients (exp date on box: 07/2024) are:

- Anhydrous levothyroxine sodium 25 mcg

- sodium citrate

- lactose

- maize starch

- acacia powder

- magnesium stearate

Any input / experiences you’d like to share will be much appreciated.

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58 Replies
Pmcg123 profile image
Pmcg123

hi there

I had been feeling terrible when taking my tablets, so much so I had to stop taking them (Levo 50mcg not sure which brand). I started feeling much better and put it down to the acacia powder. I also noted years ago feeling awful after taking vitamin tablets with similar fillers!

My T3 & T4 levels are ok but TSH is high now that I am off the levo.

Hope you manage to get sorted!

Paul

SlowDragon profile image
SlowDragonAdministrator in reply toPmcg123

Pmcg123

See my reply too

50mcg is only standard STARTER dose

Even if we frequently start on only 50mcg, 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

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

SlowDragon thank you.

PinkCat2023 profile image
PinkCat2023 in reply toPmcg123

Pmcg123 thank you. I do wonder about the acacia filler. I have mast cell activation syndrome and apparently acacia can be a trigger. I’ve requested a prescription for Tirosint from my doctor, it’s a type of Levo that supposedly has no fillers. I hope you can get your TSH down somehow, if you felt that would be beneficial for you.

Sparklingsunshine profile image
Sparklingsunshine in reply toPinkCat2023

I couldn't get on with Mercury, it made me itch. But I have a history of allergies and anaphylaxis so drug side effects aren't new.

PinkCat2023 profile image
PinkCat2023 in reply toSparklingsunshine

I am also hypersensitive to meds and supplements and it's getting worse, which is why I wondered if the fillers may be at least part of the issue. I have histamine intolerance and MCAS, most likely as a result of prolonged indoor mold exposure. Would you know if you have this as well and if that's what might be causing you symptoms? It may well be something different for you, of course.

Sparklingsunshine profile image
Sparklingsunshine in reply toPinkCat2023

Possibly, I have considered it, I have Ehlers Danlos which is associated with MCAS. I've had issues with asthma, hayfever and very sensitive skin since childhood, and I had an anaphylactic reaction to a previously well tolerated pain killer out of the blue. I'm not sure I have the energy to battle with the NHS about getting diagnosed though.

PinkCat2023 profile image
PinkCat2023 in reply toSparklingsunshine

Sparklingsunshine

I'm so sad to read this. I think mold exposure is at the root of my MCAS personally, but I'm not sure if the NHS would test for that at all (urine tests - I was advised to do both the Great Plains Mycotoxins and RealTime Mycotoxins tests). Just in case you're interested in learning more about MCAS, I've found Beth O'Hara's blogs, Facebook lives etc super helpful. She has MCAS and had mold toxicity, SIBO etc, etc, so she really speaks from experience and she's a trained in so many fields, though not an MD. Her site is mastcell360.com. She covers topics such as best foods for MCAS (taking into account many people w MCAS also have oxalate intolerance, salicylate issues, fodmap issues, etc), recipes, supplements, beauty product ingredients to avoid, mold, different types of testing and much more. Most of it is available for free.

Sparklingsunshine profile image
Sparklingsunshine in reply toPinkCat2023

Thank you I'll have a look 😁

crimple profile image
crimple

PinkCat2023, I cannot tolerate Acacia powder. Are you only taking 25mcgm per day? What are your last test results like for TSH, T4 andT3. If gp says they are in range that isn’t good enough, you need the numbers and the ranges in brackets. You are legally entitled to have your blood test results.

PinkCat2023 profile image
PinkCat2023 in reply tocrimple

crimple thank you. Sounds like acacia isn’t well tolerated by some people. I have mast cell activation syndrome and apparently acacia can be a trigger. I’ve requested a prescription for Tirosint, which is a type of Levo that supposedly doesn’t have fillers. I hope I can start it soon.

I was trying NDT (Erfa) for a short while (probably just over a week) and wasn’t feeling well. I had my bloods tested but this was while taking NDT:

TSH 0.75 (0.27 - 4.2)

FT4 12.4 (12 - 22)

FT3 4.6 (3.1 - 6.8)

This is when I added 50 mcg of Levo (Mercury Pharma) to my daily routine and when the bloating increased and the heartburn really took off.

I alternate my Levo atm between 25 mcg one day and 50 mcg the next day. It used to be when I took 50 mcg per day, I’d start feeling anxious, rapid heartbeat etc, which I why I alternate.

Felt so much better on NDT for 1 day (1/2 grain) and then again a few days later (1/2 grain am + 1/4 grain pm) but definitely in a downward spiral at present.

ZeldaR profile image
ZeldaR

Hi,

I’ve read that some people do have a problem with the Mercury Pharma brand, but I’d say your biggest problem is you’re under medicated. 25mcg is a starter dose and you shouldn’t have been left on that for years. Incidentally, the symptoms you experience are amongst those I had when recently I needed a slightly higher dose of T4. Like Crimple said, post your latest test results so members can comment on that aspect.

PinkCat2023 profile image
PinkCat2023 in reply toZeldaR

ZeldaR thank you. I’m sorry to read you’ve experienced similar symptoms - and more. I hope you’re feeling better now you’re on a higher dose? I did wonder if my symptoms could be due to low T4, which I when I added 50 mcg of Levo to my NDT. This is when my symptoms got way worse.

Good point re the levels:

I was trying NDT (Erfa) for a short while (probably just over a week) and wasn’t feeling well. I had my bloods tested but this was while taking NDT and no Levo:

TSH 0.75 (0.27 - 4.2)

FT4 12.4 (12 - 22)

FT3 4.6 (3.1 - 6.8)

This is when I added 50 mcg of Levo (Mercury Pharma) to my daily routine and when the bloating increased and the heartburn really took off.

I alternate my Levo atm between 25 mcg one day and 50 mcg the next day. It used to be when I took 50 mcg per day, I’d start feeling anxious, rapid heartbeat etc, which I why I alternate. I mentioned only the 25 mcg pills because those are the ones I take: 1 pill one day, 2 pills the next day

Felt so much better on NDT for 1 day (1/2 grain) and then again a few days later (1/2 grain am + 1/4 grain pm) but definitely in a downward spiral at present.

Most recent test results before NDT, so when taking Levo 25 mcg / 50 mcg on alternating days, are from early November 2023:

TSH 1.68 (0.27 - 4.2)

FT4 13.6 (12 - 22)

FT3 3.7 (3.1 - 6.8)

I’ve requested a prescription for Tirosint, which is a type of Levo that supposedly doesn’t have fillers. I hope I can start it soon and that that’ll make a difference.

SlowDragon profile image
SlowDragonAdministrator in reply toPinkCat2023

Most recent test results before NDT, so when taking Levo 25 mcg / 50 mcg on alternating days, are from early November 2023:

TSH 1.68 (0.27 - 4.2)

FT4: 13.6 pmol/l (Range 12 - 22)

Ft4 only 16.00% through range

FT3: 3.7 pmol/l (Range 3.1 - 6.8)

Ft3 also only 16.22% through range

How long had you been on this dose before testing

No point testing until 6-8 weeks past

These show you are currently extremely under medicated

But will need to increase dose SLOWLY to avoid issues tolerating increase

Highly likely you have very low vitamin levels

At the moment you need to SLOWLY increase levothyroxine

Before even considering NDT

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

@slowdragon thank you.

My main question, in response to your comment, is about Levo vs. NDT:

But will need to increase dose SLOWLY to avoid issues tolerating increase

At the moment you need to SLOWLY increase levothyroxine

Before even considering NDT - what's the reason for staying on Levo, rather than changing over to NDT please? I am planning to stay on Levo for now, but only because I want to have some sort of baseline before trying anything new again. My T4 to T3 conversion isn't great so I think I'll eventually need to supplement with either NDT or T3, to get that up. Just taking T4 may not be the answer for me personally.

How long had you been on this dose before testing - about 4 years

Highly likely you have very low vitamin levels -

Nov 2023: Serum vit D 84 (50 - 200)

Most recent other tests are from this summer:

Active B12 >256 (25.1 - 165.0)

Red cell folate 588 (340 - 1474.7)

Ferritin 13 (13 - 150) *low*

My iron used to be low but that’s now back in range, since starting to eat meat again my ferritin hasn’t been re-tested since this summer but I’m hoping that’s up as well. Recommended lower level for females is 27. I’ll have this re-tested in the next few months. I saw you also kindly gave lots of information about ferritin in another reply to this post, I'll check that out and will revert asap.

ZeldaR profile image
ZeldaR in reply toPinkCat2023

I was on 100mcg T4, now on 125mcg T4 plus 10 mcg T3. I’m sure my level of symptoms for which I got the increase was far milder than yours probably are on that small dose you have currently! As shown by your lab results, and as SlowDragon explains, you’re quite undertreated. I can tell you that I’m much improved after a mere 3 months on the increased dose, and I’m sure you’ll feel lots better once your dose is right and you’ve added the supplements as SD suggested.

Best of luck with getting it sorted.

PinkCat2023 profile image
PinkCat2023 in reply toZeldaR

ZeldaR thank you. I'm glad you're feeling so much better! I agree I need to improve my thyroid levels somehow, to try to feel better. The thing is though, I was on Levo 25 / 50 mcg (alternating days) for 4 years before I tried NDT iso Levo. On NDT, I soon started getting heart palpitations, and feeling worse, except for the very first day I took it - and except for the day I increased my NDT dose from 1/2 grain AM to 1/2 grain AM + 1/4 grain PM. I had so much more energy, so there's definitely something to pursue there. It was only when I got my test results, saw my especially low FT4, that I added the Levo back in - and that's when the bloating went out of control and the heartburn started. So I'm wondering if by being off Levo for just a short while, I somehow became sensitive to some of its fillers, or something else happened, that triggered these symptoms. I was already bloating but not like this. My heartburn is also new, in this capacity.

SlowDragon profile image
SlowDragonAdministrator in reply toPinkCat2023

The thing is though, I was on Levo 25 / 50 mcg (alternating days) for 4 years

This is a ludicrously low dose

Approximately how much do you weigh in kilo

You should have been started on 50mcg and increased up in 25mcg steps as fast as possible until on approximately 1.6mcg Levo per kilo of your weight per day

Unless extremely petite that’s going to be at least 100mcg per day

SlowDragon profile image
SlowDragonAdministrator

Are you saying you are ONLY taking 25mcg levothyroxine per day?

standard STARTER dose levothyroxine is 50mcg unless over 65 years old

And all patients need to slowly INCREASE dose upwards over first 6-24 months

Levothyroxine doesn’t “top up” failing thyroid, it replaces it

Therefore almost everyone eventually needs to be on full replacement dose. Typically that is approximately 1.6mcg of levothyroxine per kilo of your weight per day

I’ve been experiencing severe bloating and heartburn

These are symptoms of being on too low a dose Levo and hypothyroid

what are your most recent thyroid and vitamin test results

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

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Having been left on just 25mcg levothyroxine, likely your vitamin levels are very poor

Low vitamin levels tend to lower TSH

Essential to test vitamin levels and maintain at GOOD levels by supplementing if necessary

Many, many thyroid patients need to supplement vitamin D, magnesium and vitamin B complex continuously

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

SlowDragon so much info, thank you.

I alternate between 25 mcg Levo one day and then 50 mcg Levo the next day. I went 50 mcg per day some time ago and didn’t feel well, very anxious and rapid heart beat. Hence why I alternate.

did wonder if my symptoms could be due to low T4, which I when I added 50 mcg of Levo to my NDT. This is when my symptoms got way worse.

Good point re the levels:

I was trying NDT (Erfa) for a short while (probably just over a week) and wasn’t feeling well. I had my bloods tested but this was while taking NDT and no Levo, at the end of December:

TSH 0.75 (0.27 - 4.2)

FT4 12.4 (12 - 22)

FT3 4.6 (3.1 - 6.8)

taken NDT 1/2 grain about 4 to 5 hours before blood test, because I wanted to see what that did to my levels

After this blood test, is when I added 50 mcg of Levo (Mercury Pharma) to my daily routine and when the bloating increased and the heartburn really took off.

I alternate my Levo atm between 25 mcg one day and 50 mcg the next day. It used to be when I took 50 mcg per day, I’d start feeling anxious, rapid heartbeat etc, which I why I alternate. I mentioned only the 25 mcg pills because those are the ones I take: 1 pill one day, 2 pills the next day

Felt so much better on NDT for 1 day (1/2 grain) and then again a few days later (1/2 grain am + 1/4 grain pm) but worse again the day after that and am definitely in a downward spiral at present.

Most recent test results before NDT, so when taking Levo 25 mcg / 50 mcg on alternating days, are from early November 2023 (fasting incl Levo for more than 24 hours prior) :

TSH 1.68 (0.27 - 4.2)

FT4 13.6 (12 - 22)

FT3 3.7 (3.1 - 6.8)

Serum vit D 84 (50 - 200)

Most recent other tests are from this summer:

Active B12 >256 (25.1 - 165.0)

Red cell folate 588 (340 - 1474.7)

Ferritin 13 (13 - 150) *low*

My iron used to be low but that’s now back in range, since starting to eat meat again my ferritin hasn’t been re-tested since this summer but I’m hoping that’s up as well. Recommended lower level for females is 27. I’ll have this re-tested in the next few months.

Supplements:

- Vit D, as calcifediol - 10 mcg (1200 IU) , per day, since my parathyroidectomy in March 2022

- Magnesium glycinate - 720 mg per day, divided over 6 tablets during afternoon and evening. If I take any less, I get muscle cramps and constipation. I have mold toxicity, which apparently uses up a lot of magnesium

- Magnesium L-threonate - 48 mg per day, at 10 pm

- Vit K2 MK7 - 120 mcg per day, after dinner

- Vitamin A (as retinol palmitate) - 2,000 IU per day, after dinner

- Vit B1 (benfotiamine) - 150 mg per day

- Vit B2 (riboflavin) - 10 mg per day

- Vit B9 (methylfolate) 50 mcg per day

- Beef liver capsule - 1 per day

- Omega 3 fish oil - 690 mg per day

- Vit E complex - 2 per week

I’ve temporarily stopped taking everything except Levo, magnesium, beef liver and omega 3 fish oil, to see if I’m having a reaction to one of the fillers in any of these supplements.

I used to take B6 and B12 as well but I didn’t feel well on these and stopped taking B6 in Sep 2022 and B12 in Oct 2022. I had B6 toxicity at the time

I cannot do any type of artificial Iron supplement, except for there’s a tiny bit of natural iron in my beef liver supplement

I’ve requested a prescription for Tirosint, which is a type of Levo that supposedly doesn’t have fillers. I hope I can start it soon and that that’ll make a difference.

That’s so interesting re the autoimmune thyroid disease being missed in 20% of the cases in the UK, I had no idea. My levels hadn’t been great for a long time but got really bad after a failed parathyroidectomy, They took out half of my thyroid to see if my parathyroid adenoma was hiding in there. It wasn’t. Whoopsie. After this, I started taking 25 / 50 mcg Levo but my doctor told me, based on my previous lab results, I’d had hypothyroidism for ages. I think my issues started soon after the Chernobyl disaster. I was in Germany at the time and the radiation was definitely increased there - and further afield of course.

Would you know what this specialist thyroid ultrasound is called? My antibodies have always been well in range but I had no idea that didn’t exclude autoimmune hypothyroidism. My grandmother on my dad’s side had some thyroid issue but no one knows what exactly. I do have hypermobility, just like my mom, and this is coded for in a gene on the 6th chromosome, which is where a lot of autoimmune diseases are found. So definitely worth looking into for me.

Thanks again for all your info, much appreciated!

SlowDragon profile image
SlowDragonAdministrator in reply toPinkCat2023

Fast heart rate can be low ferritin

Ferritin 13 (13 - 150) *low*

My iron used to be low but that’s now back in range, since starting to eat meat again my ferritin hasn’t been re-tested since this summer but I’m hoping that’s up as well. Recommended lower level for females is 27. I’ll have this re-tested in the next few months.

Aiming for ferritin as MINIMUM over 70

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Posts discussing Three Arrows as very effective supplement

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Iron patches

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Ferritin range on Medichecks

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

Fast heart rate can be low ferritin – this was mostly at night, do ferritin levels also fluctuate, not sure? Or might this be due to too low T4 (since FT4 was 12.4 (range 12 - 22) about 4 to 5 hours after taking NDT? It surely was too low overnight and within about an hour or so after taking NDT, I started feeling better.

Aiming for ferritin as MINIMUM over 70 – I’m pretty sure I won’t have that but am hoping to be pleasantly surprised after my next blood test. If it is still quite low, at least then I’ll know and I can hopefully do something about it. I also have stage 4 endometriosis and very heavy periods. I feel my current symptoms have come up too suddenly to be directly related to that though.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. – I can’t do iron supplements full stop. I’ve tried Three Arrows heme iron, QuattroFerrin, Lactoferrin, PatchMD iron plus and many others. The side effects are too much. I apparently also have some DNA defects that mean I shouldn’t supplement with iron. Natural iron seems to be ok. I can’t do iron IV, because I have MCAS.

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test – great advice, thank you.

Look at increasing iron rich foods in diet – will do. I've started eating meat, incl red meat, again. I saw there are many more options, which is so good to know.

Thank you also for all the links you’ve shared, much appreciated!

SlowDragon profile image
SlowDragonAdministrator in reply toPinkCat2023

Dose levothyroxine

I do have hypermobility, just like my mom, and this is coded for in a gene on the 6th chromosome, which is where a lot of autoimmune diseases are found. So definitely worth looking into for me.

We have many EDS members…..

(Search facility is poor on here …but here’s a few)

healthunlocked.com/search/p...

healthunlocked.com/search/p...

nearly all EDS seem to find strictly gluten free diet extremely beneficial or essential

Gluten intolerance is often a hidden issue.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Have you tested BOTH TPO and TG antibodies

If both are negative

Definitely worth getting ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

SlowDragon Thank you.

We have many EDS members – I’ve been tested for EDS and do not meet the criteria, but the same doctor confirmed I definitely have hypermobility.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet – I’ve had a biopsy performed during an endoscopy and have had coeliac ruled out. I do get more zits when I eat gluten, so I do not tolerate them well.

Have you tested BOTH TPO and TG antibodies – yes, I had them tested several times. Most recent test results:

TPO Abs 11.00 (0 – 35) – 12/04/22

Anti TPA Abs 18.00 (0 – 50) – 07/09/22

TG Abs 5.00 (0 – 50) – 09/08/21

Anti TG Abs 19.00 (0 – 100) – 07/09/22

Thyroglobulin 12.20 (3.5 – 77) – 09/08/21

RT3 0.27 (0.09 – 0.35) – 09/08/21

T3 uptake 26.45% (22 – 37%) – 04/04/19

If both are negative Definitely worth getting ultrasound scan of thyroid - I’ll discuss a thyroid US when I chat with my doctor in a couple of weeks. Thank you!

SlowDragon profile image
SlowDragonAdministrator in reply toPinkCat2023

alternate my Levo atm between 25 mcg one day and 50 mcg the next day. It used to be when I took 50 mcg per day, I’d start feeling anxious, rapid heartbeat etc, which I why I alternate. I mentioned only the 25 mcg pills because those are the ones I take: 1 pill one day, 2 pills the next day

many members need to take same dose everyday

So cutting 25mcg in half taking 37.5mcg daily

Retest after 6-8 weeks

Then try 50mcg daily

You may (initially) find it better to take as 25mcg waking and 25mcg at bedtime

After few weeks try taking whole dose at bedtime

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...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

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

Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test

Which brand of levothyroxine are you using

Many patients find different brands are not interchangeable

Felt so much better on NDT for 1 day (1/2 grain) and then again a few days later (1/2 grain am + 1/4 grain pm) but worse again the day after that and am definitely in a downward spiral at present.

Far too soon to consider adding any T3 or NDT

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

SlowDragon thank you.

many members need to take same dose everyday – I’ve requested a prescription for Tirosint 13 mcg and 25 mcg tablets, so I can dose the same amount every day. I’ve never liked alternating the doses but was not aware of an alternative between 25 mcg and 50 mcg until recently.

You may (initially) find it better to take as 25mcg waking and 25mcg at bedtime. After few weeks try taking whole dose at bedtime – I take my Levo around 4 am at present, when I use the loo 😊 I have yogurt in the morning (after 8 am, lots of calcium) and magnesium in the afternoon and evening, so taking it once a day would be ideal for me, hence the current 4 am routine.

Which brand of levothyroxine are you using – I’ve been on Mercury Pharma from the start.

Far too soon to consider adding any T3 or NDT (in reply to my “Felt so much better on NDT for 1 day (1/2 grain) and then again a few days later (1/2 grain am + 1/4 grain pm) but worse again the day after that and am definitely in a downward spiral at present”) – I soon felt miserable on NDT alone. My FT4 was definitely too low at 12.4 (range 12 - 22) about 4 to 5 hours after taking NDT – means it was even lower before taking it. What would be a better way to approach to this in the future please, without feeling miserable for weeks / months on end due to sticking to the same dose?

SlowDragon profile image
SlowDragonAdministrator

Assuming you are in the U.K. ?

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

See exactly what has been tested

Far too often only TSH……completely inadequate

Request new test including Ft4 and Ft3, thyroid antibodies and vitamin D, folate, ferritin and B12

Book early morning, ideally before 9am. Only drink water between waking and test, and last dose levothyroxine 24 hours before test

If GP unhelpful

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

SlowDragon thank you so much for this. I feel super fortunate to have private health insurance through my husband’s work. I basically get tested whatever I want and whatever the doctor suggests. We work together and discuss the options, which I really appreciate. The doctor’s assistants have been super helpful as well and assist me in getting the lab results. They report them as soon as they have them.

SlowDragon profile image
SlowDragonAdministrator

Having been left for years on only 25mcg levothyroxine you may find you need to increase dose slowly

Standard increase is 25mcg steps

So increase to 50mcg

Wait 6-8 weeks…..retest ….increase

Repeat until on full replacement dose

You might initially need to increase by only 12.5mcg ….cutting 25mcg in half……up to 37.5mcg daily

Wait 6-8 weeks retest

Then up to 50mcg

etc etc

Most important results are always Ft3 (active hormone) followed by Ft4 (levothyroxine)

Most people when adequately treated will have both Ft3 and Ft4 at least 70% through range

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

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

SlowDragon thank you again, so much for this! I’ve requested Tirosint 13 mcg and 25 mcg from my doctor. I’ll call his assistant on Monday, to ask them to prescribe this urgently. I may ask to add NDT or T3 later but feel I need to get to a place where I feel comfortable about this first. I feel my levels are going all over the place atm - and especially since stopping Levo and starting NDT, then adding Levo back in…. Hoping to start Tirosint soon.

SlowDragon profile image
SlowDragonAdministrator in reply toPinkCat2023

You almost certainly don’t need Tirosint ….just get dose levothyroxine increased

Your extremely low ferritin levels will have been lowering TSH hiding how hypothyroid you are

If in U.K. Tirosint virtually impossible to get

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

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

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

You might need lactose free levothyroxine

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Aristo (currently 100mcg only) is lactose free and mannitol free.

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

List of different brands available in U.K.

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

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand 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.

Government guidelines for GP in support of patients 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.

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).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

SlowDragon thank you.

You almost certainly don’t need Tirosint ….just get dose levothyroxine increased – I have MCAS and am hypersensitive to, well, everything. My mast cells have gone completely haywire and I’ll need to do a lot of work post house move (getting away from mold) to detox and reset my mast cells and nervous system. I thought Tirosint could therefore be helpful for me, as it is Levo without fillers?

Your extremely low ferritin levels will have been lowering TSH hiding how hypothyroid you are – oh my goodness, I had no idea. Whoops. Really good to know!

If in U.K. Tirosint virtually impossible to get – yes, I'm in the UK. My doctor works with a pharmacy that, supposedly, prescribes it.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord – I take Mercury Pharma atm and need a change, I feel I’m reacting to something. So odd I wasn't reacting to it in the same way before I switched to NDT only - and then when I added Levo back into the equation, I started having symptoms. These symptoms have persisted since I've stopped taking NDT (back on Mercury Pharma Levo only).

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets – if Tirosint is not available, this is the alternative brand I was considering.

Teva is lactose free. But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome – I can’t do mannitol unfortunately, as I need to watch my fodmaps. I’m not lactose intolerant (whoohoo) 😊 I do have a lot of bad gut bacteria and not enough good ones (Zoe stool test), so I'll need to keep working on that as well. Until we move away from our moldy house though, I won't be able to fully heal and feel better, gut wise.

SlowDragon profile image
SlowDragonAdministrator in reply toPinkCat2023

and especially since stopping Levo and starting NDT, then adding Levo back in….

It can take months to recover from sudden changes in thyroid medication…..especially adding T3 in too early as this will exacerbate any adrenal fatigue

Slow and steady wins the race

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

SlowDragon thank you. What would be the best way to change thyroid meds please? I'd like to do this the right way, but staying on a low dose NDT, for instance, while feeling miserable because my levels are low (FT4 was 12.4 -range 12 - 22- and this was a bout 4 to 5 hours after taking my NDT) just to stick to the same dose of meds... surely there's a more customer friendly option? 😊

helvella profile image
helvellaAdministrator

The ONLY change to formulation of levothyroxine products in the UK this century relates to the Teva product. And that was brought back to market after complete reformulation in 2016 - and emblazoned across every pack.

Of course, minor changes to the regulations occur - the precise tests required to approve an excipient (inactive ingredient), etc. And companies might purchase their ingredients from different sources.

And products new to the UK have arrived on the market - each with their own formulation.

Pharmaceutical companies do their best to avoid the costs and other issues of changing formulations.

And no-one can rule out accidental/inadvertent changes, mistakes in the factory, etc.

I agree with others that your dose is far more likely to be the issue.

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

This link takes you to a page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones.

The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.

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

PinkCat2023 profile image
PinkCat2023 in reply tohelvella

helvella thank you! That looks like a great resource, I really appreciate you sharing this. I would love to get my levels up a bit more. Tried NDT for about a week or so, then found out my FT4 was a bit low and added Levo back in, which is when my symptoms really kicked off. I’ve asked my doctor to prescribe Tirosint, a type of Levo which supposedly has no fillers. I’ve asked him for 13 mcg and 25 mcg capsules, so I can add a bit as needed. I may well add in NDT or T3 at some point but will start with just the “natural” Levo for the time being.

helvella profile image
helvellaAdministrator in reply toPinkCat2023

I've said before, Tirosint has a small number of fillers (I prefer the term 'excipients') - but a larger quantity than in any tablet.

It matters whether you tolerate the gelatin and the glycerol in those quantities!

If you are in the UK, your chance of getting Tirosint is close to zero. And if you are going private, the cost might be a shock.

PinkCat2023 profile image
PinkCat2023 in reply tohelvella

helvella thank you. So even though Tirosint has a lower number of fillers, the actual amount of fillers in Tirosint is higher than in most other tabs? I had no idea! I think I'm ok with gelatin an glycerol. I've been working with a doctor who works with a pharmacy, that, supposedly, prescribes Tirosint. And I am not looking forward to hearing the price tag, I'm sure! If it can help me feel better, I'd like to try it though.

helvella profile image
helvellaAdministrator in reply toPinkCat2023

A UK levothyroxine tablet probably weighs between 50 and 120 milligrams.

I do not know how much a Tirosint gel cap weighs. But I would be amazed if it weren't significantly more. Some will be water, but the rest will be glycerol and gelatin.

Tirosint SOL could be better because it has no gelatin - but even less easy to access. We have some members who do not tolerate gelatin.

Tirosint-Sol

healthunlocked.com/thyroidu...

Tirosint

healthunlocked.com/thyroidu...

PinkCat2023 profile image
PinkCat2023 in reply tohelvella

helvella thank you. I didn't even know there was an oral Tirosint solution, thought it was just the gel caps. Good to know. I'll keep it in mind, in case I do try Tirosint and it doesn't sit well with me, then I can request Tirosint-SOL.

Batty1 profile image
Batty1

acacia powder = poison

SlowDragon profile image
SlowDragonAdministrator in reply toBatty1

That’s clearly untrue as thousands of thyroid patients are quite happy with acacia

You mean you personally don’t get on with any medication with acacia in

Batty1 profile image
Batty1 in reply toSlowDragon

I stand corrected SlowDragon … it’s poison to me !!!

nightingale-56 profile image
nightingale-56 in reply toBatty1

And to me Batty1 , since they changed how it was heat-treated (not sure when).

Batty1 profile image
Batty1 in reply tonightingale-56

My issue with Acacia its a tree and for people like myself if you have a tree allergy you most likely will have a reaction to Acacia and unfortunately for some of us it’s a slow process before you realize what’s causing you problems….. Rashes, breathing problems, congestion, runny nose, burning eyes, palpitations and generally feeling awful… like I said the reaction was slow didn’t happen immediately it took a long time Im guessing a build up was required…. I only ingest thyroid meds without Acacia and have not had any problems since .

I didn’t know about a heating issue with Acacia.

nightingale-56 profile image
nightingale-56 in reply toBatty1

Acacia Powder has to be heat-treated before it can be used with soap. This snippet was in an old version of Medical Excipients Handbook that was on the old Thyroid UK website (before HealthUnlocked took the forum over). The change of heat-treatment is in the latest version of this book (Bible) which now costs about £150. Sorry, I do not know how to do links and can't find the one that was given to me. I do know that acacia is very allergenic, but the skin problem I have had since 2010, when my Levothyroxine was changed from Goldshield Eltroxin to Mercury Pharma Levothyroxine is still ongoing and other things seems to be affected also since then.

Batty1 profile image
Batty1 in reply tonightingale-56

Its a crazy ride

PinkCat2023 profile image
PinkCat2023 in reply toBatty1

Batty1 nightingale-56 I’ll certainly look into acacia free alternatives. It’s so silly though, in my case, I didn’t have these symptoms until after I’d stopped taking Levo for a few days, noticed my FT4 was quite low, and then added Levo to my NDT. That’s when my bloating got really bad (it already wasn’t good) and the near-constant heartburn started. Now back on Levo only, so no NDT but the bloating and heartburn appear to not be ready to leave me just yet.

SlowDragon profile image
SlowDragonAdministrator in reply toPinkCat2023

I didn’t have these symptoms until after I’d stopped taking Levo for a few days, noticed my FT4 was quite low, and then added Levo to my NDT. That’s when my bloating got really bad (it already wasn’t good) and the near-constant heartburn started. Now back on Levo only, so no NDT but the bloating and heartburn appear to not be ready to leave me just yet.

As soon as we take anything containing T3 (eg NDT) this will significantly and immediately lower TSH reducing how much thyroid hormone your own thyroid releases.

TSH will be slow to recover after stopping T3

That’s why it’s very important to get Ft4 high enough and up to full dose BEFORE changing to anything containing T3

As you improve your dire ferritin up towards 70-100 you should be able to tolerate higher doses of levothyroxine

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

SlowDragon thank you so much for clarifying this for me. My FT4 was definitely not optimal when I started NDT, I thought I was going to be fine as I was taking both (as in NDT contains both T3 and T4). When TSH plummets due to T3 supplementation, does that then mean less T4 is produced / secreted so that's why T4 goes down? And, if that is the case, should I not aim for a combination of T3 and T4?

Might anything come to mind that I can do right now to feel less bad?

SlowDragon profile image
SlowDragonAdministrator in reply toPinkCat2023

Increase levothyroxine to 50mcg

Try Accord or Wockhardt

Wait 6 weeks

Retest correctly

Increase to 75mcg daily (or 67.5mcg if going to 75mcg is too big a jump)

Cut 25mcg tablets in half with sharp scalpel to get 12.5mcg

Get weekly pill dispenser if cutting tablets to store remainder for next day

Wait 6-8 weeks on constant unchanging dose before retesting

Meanwhile working on improving low ferritin and maintaining other vitamins

Also test zinc, selenium

If not gluten and dairy free, look at trialing these

Most important thing is only ever change one thing at a time

25 years ago…….It took me 2-3 years to very slowly increase from 75mcg to 125mcg under care of thyroid specialist …..now on T3 alongside levothyroxine

More on my profile

Chopping and changing dose (we have all done it in exasperation) ….but it exacerbates adrenal issues

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

SlowDragon So many good ideas, thank you!

SlowDragon profile image
SlowDragonAdministrator in reply toPinkCat2023

When TSH plummets due to T3 supplementation, does that then mean less T4 is produced / secreted so that's why T4 goes down?

Yes exactly

We can’t tolerate substantial change in dose

It has to be built up very very slowly

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

SlowDragon thank you.

Hypo321 profile image
Hypo321

Good morning I saw your post re Mercury Pharma I too am having problems , I have been taking this brand for years. Did you manage to find out if ingredients have changed?

helvella profile image
helvellaAdministrator in reply toHypo321

The ingredients as listed in the Patient Information Leaflets, have NOT changed.

My earlier reply on this thread says that:

healthunlocked.com/thyroidu...

Hypo321 profile image
Hypo321 in reply tohelvella

Thank you Helvella for your reply, I will have a read.

Jesslane profile image
Jesslane

I have the same symptoms. I have been on levothyroxine for hashimotos thyroiditis for about 7 years now on the same dose 75mcg. I have recently had extreme bloating which I have had every blood test and investigation for and nothing had been found to explain it so I’m starting to think could it be my thyroxine. I am on mercury brand but as my pharmacy give me all different brands unsure if my symptoms started when the brand changed.

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