Heartburn: Has anyone else had terrible heartburn... - Thyroid UK

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Heartburn

Odinil profile image
16 Replies

Has anyone else had terrible heartburn taking Mercury Pharma my throat and chest are burning. The minute i take it the burning starts had to stop taking Accord when it changed from Activis as it made me so ill but no heartburn. Ive been taking MP for the last couple of months seemed ok but now this.

Ive never suffered with heartburn before and my diet hasnt changed.

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Odinil profile image
Odinil
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16 Replies
SlowDragon profile image
SlowDragonAdministrator

Acid reflux is common hypothyroid symptom

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

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).

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

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/

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Odinil profile image
Odinil in reply to SlowDragon

I just give up. The consultant doesnt see a problem at the hospital neither does my gp after looking at my blood test results. I say the same thing over and over again re low b12 low folate, tsh t4 high range t3 low range and it goes on deaf ears. Im now being told by the pharmacist that Mercury Parma is becoming hard to get. She mentioned liquid levo but said i may not get it prescribed as so expensive what do you have to do to make doctors/consultants listen to you. They make noises, your blood test results are all fine. I tell them i have had a private blood test done and its laughed at oh they just like to make money. I cant bear all the negativity anymore im done 😪Anyone on liquid levo? pharmacist said its only prescribed if you have severe reactions to the tablets like red rashes all over your body!

Said the ingredients are very different to whats in the tablet form it cant be any worse then how im feeling.

Im done 😪

SlowDragon profile image
SlowDragonAdministrator in reply to Odinil

So you need to self supplement vitamins to maintain OPTIMAL vitamin levels

On just levothyroxine, Ft4 should be near top of range

Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe liquid Levothyroxine and/or T3

NHS and Private

tukadmin@thyroiduk.org

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

When adequately treated, TSH will often be well under 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

Liquid levothyroxine usually only prescribed initially via endocrinologist

Odinil profile image
Odinil in reply to SlowDragon

Yes i have been supplementing with B12 tablets and B12 mouth spray and vitamin D mouth spray. i'll keep taking them but i actually feel worst.

I have joint pain and stiffness something i never had as bad as it is now.

I have decided to see a private consultant as soon as i can have a face to face meeting.

I will get the up to date list from Thyroid UK. I've done all i can theres no other way forward now.

After my appointment with the gp today and her total lack of knowledge re FT4 and FT3 i made my mind up that im not going to put myself through this anymore its a total waste of time even the consultant at Addensbrooke Hospital seems to be only interested in the TSH result and when i mention T4 and T3 they look at me blankly.

My T4 is top of the range and T3 low end of range. When i was on Activis my TSH was 1. something today is was 2.something sorry i havent got my results in front of me.

My TSH has increased probably why im getting more symptoms. The gp said its where it should be. Addensbrooke consultant actually said if you increase your dosage your TSH goes up the less you take your TSH goes down i thought the bigger the dosage the lower the TSH. All a worry!! This experience has proved to me that theres alternative but to go private or go it alone with the help of this forum.

Have you heard good results from people on liquid levo?

SlowDragon profile image
SlowDragonAdministrator in reply to Odinil

Before seeing any thyroid specialist, especially if paying you need FULL thyroid testing

TSH, Ft4, Ft3, vitamin D, folate, ferritin and B12

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Obviously if TSH has gone up you likely need dose increase

If Ft4 is top of range and Ft3 bottom of range you have poor conversion

First step is to get all four vitamins tested and at optimal levels...if not done so already

Are you on strictly gluten free diet or dairy free diet

Have you ever tried adding T3?

Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3 or liquid levothyroxine......NHS and Private

tukadmin@thyroiduk.org

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 under 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

Odinil profile image
Odinil in reply to SlowDragon

No i am not gluten free or diary free. I have never had T3 the mere mention of the word seems to make gp's and consultants shift uncomfortably in their seat.I have been taking B complex and vitamin D supplements since Medicheck results said my B12 and folate were low and since doing so i have terrible joint pain in my hands and when i wake in the mornings i have pins and needles and numbness in my fingertips ive had neither before. This is also since i changed from Accord to Mercury Pharma. Also ive noticed my face has bloated and ive had burning in my throat and a feeling like i have a rope tied around my neck again since taking MP.

I am continually being told my B12 folate ferritin D3 are normal same as my TSH , T4 and T3 by nhs gp's and hospital consultants. My T4 is top of range and T3 low range.

I will make sure i see an Endo privately as soon as i am able to see one in person and before i am due to see them i will get a Medicheck blood test done in readiness.

I cant stand all the negativity that ive experienced throughout the six years i have been battling with my medication, they are ignoring the truth and letting people suffer knowing that there is more they can do.

The more i learn the more angry it makes me.

SlowDragon profile image
SlowDragonAdministrator

Previous posts show extremely low B12 and folate

And low Ft4

All suggest under medicated

Odinil profile image
Odinil in reply to SlowDragon

My T4 is top of range and T3 is low end of range im continually being told its fine when i question it and say it should be meeting in the middle somewhere it goes silent. The last two days i have increased levo from 62.5mg to 75mg just to see if it makes a difference.

SlowDragon profile image
SlowDragonAdministrator in reply to Odinil

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

Different brands are not bio equivalent. So 100mcg in one brand will give a different level of thyroid hormones compared to 100mcg in a different brand

So retest after 6 weeks on 75mcg levothyroxine

Unless extremely petite likely to need further increase

guidelines on dose levothyroxine by weight

Even if we 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 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...

You’re looking for Ft4 and Ft3 at least 60% through range

All four vitamins need to be at optimal levels

Frequently strictly gluten free diet helps or is essential

Something to consider after next blood test

Cheapest blood test for TSH, Ft4 and Ft3 is via Monitor My Health (nhs run private testing)

Odinil profile image
Odinil in reply to SlowDragon

I did think that as i was doing ok on Actavis and Workehart. I did wonder if it was the brand or the difference in hormone levels. Now on MP my Tsh level has gone up. Its just so confusing as Medicheck in their overall opinion suggested maybe a decrease in levo.

Dear Teresa,

You have not felt well since starting thyroxine following a total thyroidectomy.

You are currently on thyroid medication. Am I right in gathering that you are on a combination of thyroxine and T3 under the care of an Addenbrookes' Specialist?

Your CRP level is normal, indicating normal levels of inflammation in the body.

Your ferritin level is normal.

Your folate is towards the lower end of normal. I recommend increasing your intake of folate rich foods such as broccoli, brussels sprouts, asparagus, peas, chickpeas and brown rice.

You have normal levels of vitamin B12, but it is towards the low end of the normal range. To work out whether there is significant underlying B12 deficiency, you may opt to have a serum methylmalonic acid blood test. Increase dietary sources of vitamin B12 that include lean meat (chicken, lean pork), milk, eggs, cheese, fortified cereals and dried yeast flakes.

Your vitamin D level is normal.

Your free thyroxine is slightly elevated and your thyroid stimulating hormone is at the lower end of normal. If you feel fine, it isn't necessary to alter the dose of your medication right now. Share these results with your Specialist at Addenbrookes and consider repeating your thyroid function in 3months' time.

Should you be experiencing symptoms of excess such as weight loss, agitation, heat intolerance, increased appetite, shakes and palpitations, speak to your Specialist.

Your thyroid antibodies are negative.

Kind Regards,

Dear Teresa,

A message from customer care is suggesting that you do not take T3. From your notes here, you take 62.5mg - you haven't said of which form of thyroid medication. Am I correctly assuming that is Levothyroxine?

It doesn't change what I have previously reported. Your free thyroxine is slightly high however your thyroid stimulating hormone is normal albeit low-normal. Simply repeat your thyroid test in 3months unless you feel like you have a thyroxine excess- weight loss, agitation, shakes, palpitations. If you are noticing such symptoms, please speak with your GP or Endocrinologist to very slightly reduce your dose.

Kind Regards

Dr. Sonya Jey

MBBS, BSc (Hons) Physiology and Pharmacology, MRCGP, DRCOG

Read Less

Supporting Information

R Range

Inside normal range

Borderline range

Outside normal range

Inflammation

Inflammation occurs when your defence system is activated to rid your body of foreign invaders or irritants and to protect against tissue damage. Typical signs of inflammation include heat, redness, swelling and pain. Inflammation can be acute or chronic. Acute inflammation is often caused by infection or injury, and it flares up and disappears within days. Chronic inflammation is caused by longer-term conditions such as arthritis, inflammatory bowel disease or asthma. Inflammation causes levels of certain proteins in the blood to rise and these can be measured to assess the extent of inflammation as well as in some instances the cause.

CRP HS

< 5 R

0.72

mg/L

Iron Status

Vitamins

Thyroid Hormones

Your thyroid is a gland in the front of your neck which produces hormones which help to govern your metabolism. It is possible for your thyroid to under-produce or over-produce thyroid hormones, and both conditions can lead to debilitating symptoms. Typically an underactive thyroid leads to symptoms of lethargy, weight gain and dry skin and hair while an overactive thyroid leads to symptoms of feeling nervous and anxious, as well as weight loss. Once diagnosed, thyroid conditions can be treated but even then it is important to continue to monitor levels of thyroid hormones to ensure that your levels remain optimal.

Read More

TSH

0.27 - 4.2 R

0.49

mIU/L

FREE T3

3.1 - 6.8 R

4.31

pmol/L

FREE THYROXINE

12 - 22 R

23.1

pmol/L

Autoimmunity

Autoimmunity occurs when your body's immune system mistakes your own cells or tissues as being "foreign" and starts attacking them. There are a number of autoimmune diseases which are defined by which parts of your body are under attack. Common autoimmune conditions include thyroid disease (Hashimoto's Thyroiditis and Graves' Disease), systemic lupus erythematosus (lupus) and rheumatoid arthritis. No one knows what triggers an autoimmune condition but it is well documented that more women than men are affected, and that your risk of developing an autoimmune condition is higher if a family member is affected, or if you have already been diagnosed with another autoimmune condition. Autoimmune disease can cause a wide range of symptoms which can either flare up from time to time with periods of remission, or remain present constantly. The symptoms vary according to the bodily systems affected by the disease. In some cases the tissue affected is very specific, e.g. the thyroid in Hashimoto's thyroiditis, whilst other diseases affect a wide range of body tissues, e.g. lupus.

Read More

THYROGLOBULIN ANTIBODIES

< 115 R

12.2

kIU/L

THYROID PEROXIDASE ANTIBODIES

< 34 R

<9

kIU/L

© Medichecks.com Ltd 2021

TERMS AND CONDITIONS

SlowDragon profile image
SlowDragonAdministrator in reply to Odinil

Doctors reports aren’t worth reading. They are just conventional GP’s, no specialist knowledge of thyroid disease

Low vitamin levels tend to lower TSH and cause poor conversion of Ft4 to Ft3

So first step is to get all four vitamins optimal

Active B12 at least over 70

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate at least half way through range

Ferritin at least half way through range

Once Vitamin levels are optimal. Really want to perhaps try strictly gluten free diet

If Ft3 still remains low you are likely to need small doses of T3 prescribed alongside levothyroxine

Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3......NHS and Private

tukadmin@thyroiduk.org

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

When adequately treated, TSH will often be well under 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

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...

sy28 profile image
sy28

Hi Odinil, I hope you don't mind me asking, but what made you so ill when switching from Activis to Accord. I suspect I'm having similar issues. best wishes

Odinil profile image
Odinil in reply to sy28

HiTo start with i had brain fog couldnt finish a sentence. Couldnt think of the names of well known people on the tv never had that before i thought i was losing my mind.

My head felt fuzzy just not with it.

My eyesight was blurry i couldnt focus. I got my eyes tested at the opticians and they sent me straight to a and e eye clinic it was definitely the Accord levo. I came off Accord and now take Mercury Pharma but i dont feel great on this either. I have since learned that different brands differ in strength. 50mg Activis can be stronger then 50mg Accord or the other way round. As soon as i stopped Accord my smyptoms inproved but i dont feel great on Mercury Pharma and my pharmacist has told me that soon it will be hard to get. Its a nightmare i will have to go on something else. With MP i have started getting burning in my throat and neck its horrible i now have reflux never had it before so it is the levo.

What smyptoms are you having?

sy28 profile image
sy28 in reply to Odinil

Hi Odinil, thanks for replying. I've been prescribed Activis since 2017, when first diagnosed with hypothyroidism. I have experienced a spate of new symptoms since discovering Activis has been phased out and replaced by Accord. These have included hives (never had hives before, but this episode lasted for 3 months, May, June, July, last summer) blurred vision, brain fog, hair shedding, palpitations, racing heart, ectopic heartbeat (December ECG was normal). Following the ECG I went through my Levothyroxine supply and packed up the Accord boxes. Up till then I hadn't noticed the change in branding as the boxes are identical, apart from the name change. Fortunately, I still had Activis in 50s and 100s left, enough to last for a three month trial. Within six weeks of retaking Activis the cardiac symptoms stopped and I slept better. Progress continued until three weeks ago and Activis ran out. Left with no choice, I started Accord again.Yesterday, I had to call the doctor and I'm having blood tests tomorrow morning. Symptoms have returned, I feel under medicated with severe gastric episodes and nausea in the last two days, other symptoms include arm tingling, brain fog, blurred vision, fatigue. In summary, Levothyroxine isn't working for me. Activis wasn't perfect, but I was stable. ps Even with Activis I used to experience acid reflux within 15 minutes of taking it. I hope you're feeling better and thanks again for replying.

Odinil profile image
Odinil in reply to sy28

Oh thats awful. Poor you!Reading your smyptoms reminded me that i too had tingling in my arms and legs, my hair became very dry, thin and falling out. I had palpatations too. Im on a low dose 62.5mg anything higher and the palpations are awful. I stopped taking Accord i was too scared i couldnt believe how ill it made me. I was reassured by the pharmacist that nothing had changed just the name on the box but i dont believe that there's something not right to cause such a bad reaction, completely messed my system up. I stopped taking them and now on Mercury Pharma. All the nasty smyptoms have gone but im still not right, im getting pins and needles in my fingers and numbness at the tips, my face looks bloated my eyelids have dropped, i feel like i have a scarf tied too tight around my neck and lack of energy. My 50's are Mercury Pharma and my 25's are Wockehart, Wockhart i have always had cut in half to make up 62.5mg. For the past 3 days i have increased my dose to 75mg to see if it gives me more energy. I think im going to stop MP and start taking Wockharte alone, it only comes in 25's so i'll take three. I did it once before when i had ran out of Actavis and i was ok although i did notice bloating. I dont think i will ever be fine on thyroxine i am so sensitive to it.

It has been a pain for the past six years ive been on it.

Theres so much talk about how T3 has changed peoples lives they feel so much better got there lives back but its a taboo subject when you mention it to gp's and hospital consultants. They refuse to prescribe it on nhs because of costs. So you are left to suffer. My pharmacist mentioned that some of her patients are on liquid thyroxine but you have to be very bad to get it prescribed on nhs she said having red rashes all over your body that bad, again its costs. Apparently it has different ingredients in it to tablet form.

Im going to speak to my consultant about it although i know i will hit a brick wall.

Once restrictions are lifted and i am able to see a private consultant in person im going to get myself sorted. I dont want to feel like this anymore theres better medications out there for us but because of costs we are being denied it.

I really feel for you. Do you think you should stop taking Accord and try something else.

I believe if i had carried on with Accord it would have done some serious damage to my body. If you speak to your gp on the subject of thyroxine medication they have no understanding of how it works they only look at the tsh result. I saw a gp last friday and i could see that when i starting saying about T4 and T3 her eyes glazed over they have no answers. I now have to take reflux medication because the tablets i am taking are causing it.

Just lately what with everything else that is going on ive felt like giving up the fight in trying to find a way to feel better and healthier, take the tablets put up with the symptoms but no life is too precious to do that.

Im so sorry you have hives my friend has developed it and she said its horrible and very itchy.

I hope you get something sorted out with your medication and start to feel better soon. I cant understand why people like us have such a bad reaction to levo and others have none i find it hard to believe.

Odinil profile image
Odinil in reply to sy28

Oh everything you experienced is exactly the same as me. When i took Accord i ended up in a and e eye clinic my optician sent me straight there after an eye test. When i stopped taking it my eyesight was better but still not great.

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