Should I stop Levothyroxine?: I'm thinking of... - Thyroid UK

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Should I stop Levothyroxine?

GeorgieandBlu profile image

I'm thinking of stopping my Thyroid medication as I don't feel any better on it. Is it safe to stop taking Levothyroxine without reducing the quantity?

I am still unable to get back to my weight of 57kgs. Currently, I weigh 60kgs, and I have to reduce my meals to breakfast and a light supper. I feel exhausted all of the time and my joints hurt.

I have just had my blood results through Thriva. The report states that my thyroid is normal and that I have high cholesterol levels.

- I am currently taking 75mg of Levothyroxine; I had previously increased it to 100mg, but I had to stop because of heart palpitations.

- BetterYou Vitamin D3000 IU oral spray (x2 sprays per day)

- Steroid eye drops x3 drops per day (Uveitis treatment)

- Estradiol HRT tablet, gel and pessary.

Apologies in advance as I cannot find the accurate ranges for Thriva, just what is detailed in the report.

CRP 3.54 (<3.0 mg/L)

Cholesterol H 6.8 (<5.2 mmol/L)

Triglycerides H 3.10 (<2.0 mmol/L)

HDL Cholesterol 1.71 (1.0 - 3.88 mmol/L)

Non HDL Cholesterol * H 5.09 (<4 mmol/L)

LDL Cholesterol * H 3.7 (<3.4 mmol/L)

Cholesterol:HDL Ratio * 3.98 (<4.0 Ratio)

Triglyceride/HDL Ratio * H 1.81 (<1.74 Ratio)

Thyroid Stim. Hormone 1.61 (0.270 - 4.2 mIU/L)

Free T3 4.6 (3.1 - 6.8 pmol/L)

Free Thyroxine (FT4) 18.8 (12 - 22 pmol/L)

Thyroglobulin Antibodies 90.9 (0 - 115 kIU/L)

Thyroid Peroxidase Antibodies H 116.7 (0 - 34 kIU/L)

Total Thyroxine (T4) H 159.0 (59 - 154 nmol/L)

25 OH Vitamin D 105 (75 - 175 nmol/)

70 Replies

healthunlocked.com/thyroidu... read my post from 2 years ago. I all but gave up on levo. Made myself very ill.

The thing is as I discovered, if you are on an inadequate dose of hormones you still have symptoms.

Being on levo was never easy for me at the start. I found it hard to cope with any small increase and had to split my dose morning and bedtime to be able to eventually increase to a daily total of 100mcg.

You need calories and carbs to effectively convert t4 to t3. If you cut back too much you end up making yourself more hypo with lower ft3. This in turn makes symptoms such as joint pain and weight gain worse

You could try increasing levo by 12.5 alternate days and splitting your daily dose so making it gentler on your body.

I wouldn't advise stopping but if you do please be careful and don't make yourself as I'll as I did.

Thank you for your response. I will try to increase the dose and split it morning and evening to see if it has any effect. However, I have been previously been told that I can't split the dose and that I have to take it first thing in the morning 30 mins before I eat or drink.I get more confused by this condition by the day! 😳

It was an endo that told me to split my dose. Some things she got right but unfortunately she kept me undermedicated for years.There is no reason you can't split the dose as long as you leave a gap between it and food, drink and supplements.

shaws profile image
shawsAdministrator in reply to GeorgieandBlu

The advice to take it early a.m. is so that our stomach is empty and wont have any interference from food. I take my full dose a.m. with one glass of water and wait an hour before I eat.

If we split our dose, it means that our receptor cells aren't saturated and it usually sends out 'waves' throughout the day.

I am also aware that some people prefer to split their dose.

I don't and take mine when I awake with one glass of water and wait an hour before I eat. Food can intefere with the uptake of the thyroid hormones.

The following link is by a scientist/researcher/doctor who was an Adviser to Thyroiduk.org before his demise due to an accident.

drlowe.com/thyroidscience/l...

GeorgieandBlu profile image
GeorgieandBlu in reply to shaws

thank you for the link, I'll take a look. 😀

Tala76 profile image
Tala76 in reply to GeorgieandBlu

Sorry , to take levethyroxin you need to be fasting for at least 4 hours before as it dies not work. Then between 30 to 1 hour to eat breakfast

SeasideSusie profile image
SeasideSusieAdministrator in reply to Tala76

Tala76

to take levethyroxin you need to be fasting for at least 4 hours before as it dies not work.

Have you got a link for this please. Some patient information leaflets say to take half an hour before food. We always suggest that people take them on an empty stomach, one hour before or two hours after food. Nowhere have I seen it said it has to be fasting for at least 4 hours.

Tala76 profile image
Tala76 in reply to SeasideSusie

I will find it for you. I used to be nurse. Best places is BNf , nice guidelines . Now I will look at it. Levethyroxin should be taken when you get up the bed before anything else. Unfortunately, even in the hospital they give at 9 after breakfast that tablet does not work

SeasideSusie profile image
SeasideSusieAdministrator in reply to Tala76

Tala76

No mention of 4 hours in this BNF/NICE link:

bnf.nice.org.uk/drug/levoth...

Initially 1.6 micrograms/kg once daily, adjusted according to response, round dose to the nearest 25 micrograms, dose to be taken preferably 30–60 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication.

And guidelines are just that, they're not set in stone.

Many members here take their Levo during the early hours of the morning if they need a regular trip to the bathroom, many members take their Levo before bed and have found this more beneficial than taking it in the morning. It's all down to what suits the individual but the most important thing is find what's right for you and stick to it but bear in mind that it should be taken on am empty stomach well away from other medication and supplements as this could affect Levo's absorption.

Tala76 profile image
Tala76 in reply to SeasideSusie

uclahealth.org/endocrine-ce....

Tala76 profile image
Tala76 in reply to SeasideSusie

uclahealth.org/endocrine-ce....

Tala76 profile image
Tala76 in reply to SeasideSusie

uclahealth.org/endocrine-ce....

Unfortunately, you need to dig every where. One year and half I was struggling of vertigo. Then I found out the medications were given to keep should not have given to underactive thyroid. Specialist did the same mistake of gps for 1 year and half until I found information and sent to them. My gp apologised of giving wrong medicine.

You just needs to read and dig. Every where. Now I realised my diet is extremely important I recommend all to read some good books., the China Study , which contains lots of appropriate research and hashimoto's thyroiditis, root cause .

SeasideSusie profile image
SeasideSusieAdministrator in reply to Tala76

That article says exactly what we always say here other than we say to take levo on an empty stomach one hour before or two hours after food with water and water only for one hour either side and they say

Thyroid medication should be taken on an empty stomach, around the same time each day. Afterwards, we recommend avoiding eating or drinking for 30-60 minutes.

.. even coffee can interfere with how you absorb thyroid hormone. We recommend waiting 60 minutes after you take thyroid hormone to drink coffee.

.........

Most of our patients take thyroid hormone in the morning upon waking.

But that is not set in stone, it's down to each individual to find what works best for them.

..........

The second most popular method is to take thyroid hormone in the evening, at least 3-4 hours after any food intake.

Which illustrates it's down to the individual as to how they take their levo but we say if members take their levo in the evening then allow about 3 hours after a large meal.

...........

Certain medications and supplements decrease absorption of thyroid hormone and should be taken 3-4 hours after taking thyroid hormone. These include fiber supplements, calcium and iron supplements, proton pump inhibitors (omeprazole/Prilosec and lansoprazole/Prevacid), soy products, and multivitamins with minerals.

Which is exactly what we suggest here. We always say to take supplements and other medication at least 2 hours away from levo and some need four hours, those being calcium, Vit D, magnesium, HRT, PPIs. We also say that soy products aren't recommended for us hypos and multivit/mineral supplements are not recommended for various reasons.

..........

Biotin has no effect on the thyroid, but it does interfere with thyroid lab tests. If you are going to have blood tests to check your thyroid function, please stop taking your biotin three days beforehand to have an accurate result.

This is something else we always advise.

So your link does not show what you have said earlier on, ie

to take levethyroxin you need to be fasting for at least 4 hours before as it dies not work.

Tala76 profile image
Tala76 in reply to SeasideSusie

At the evening and who is working night time. Not in the morning. When I am working night time, I do not eat like night time when I am in bed.

Do I have to take my thyroid hormone in the morning? Can I take my thyroid hormone at night?

Taking your thyroid hormone at night is a fine option, but remember that it should be taken on an empty stomach and at least 3-4 hours after eating.

You can look at pharmacodynamic and pharmocuconetic of the drug , then you know how to take.

When we woke up, we do not eat anything during we are in bed but who are taking in the evening needs to consider 3 to 4 hours empty stomach.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Tala76

You can look at pharmacodynamic and pharmocuconetic of the drug , then you know how to take.

I don't think we need to look at anything else. It is always advised here that we take thyroid hormone replacement on an empty stomach one hour before or two hours after food. Nowhere have you provided any evidence of it needing it to be taken 3-4 hours after eating.

Tala76 profile image
Tala76 in reply to SeasideSusie

Do I have to take my thyroid hormone in the morning? Can I take my thyroid hormone at night?

Taking your thyroid hormone at night is a fine option, but remember that it should be taken on an empty stomach and at least 3-4 hours after eating

Above sentences us from that like I put it. Some one copy and past the page but I think no one read it that this above sentence is part of it. You can find in books. And articles too if you search it

tattybogle profile image
tattybogle in reply to Tala76

"Sorry , to take levethyroxin you need to be fasting for at least 4 hours before as it dies not work. Then between 30 to 1 hour to eat breakfast"

i don't think it's right to say "it doesn't work "

it does still 'work' ,.... but less of that dose will be absorbed into the bloodstream, depending on the stomach contents . so taking levo close to food /drink will certainly lead to lower/ variable absorption rates .

But this doesn't stop the levo that IS absorbed from working properly .

In ideal conditions (a totally empty stomach) we may absorb approx 80mcg of the T4 from a 100mcg tablet.

taking levo closer to food will probably reduce this %, somewhat .....( certainly calcium , caffeine, & iron have been shown to reduce absorption ... but presumably most food/ drink will have some effect , it just hasn't been tested to prove it )

So taking levo close to different foods at different times might lead to absorbing 60mcg one day and 30mcg the next .

But if you always ate the same breakfast every day and took levo with it .. your absorption would be consistent ,for example 50% every day . and so your prescribed dose would end up based on this absorption rate . Your dose might end up being eg . 125 mcg rather than 75mcg........ But this isn't actually a problem. ( apart form using more tablets to get the same effective dose)

An Inconsistent absorption rate every day would lead to problems with finding the right dose .

But absorbing a consistent 50% every day if you eat the same supper every evening and take levo 2 hours afterwards is not a problem 'in itself' , as long as it's consistent and you have your blood tests done to take this consistent sub-optimal absorption. into account.

For example i have ALWAYS taken my morning Levo WITH a cop of Rooibos and a splash of milk..... and my blood tests reflect what my absorption of levo is under those conditions .. and my dose is set accordingly .

I split my Levo dose in two each day :

50mcg first thing A.M WITH Rooibos/milk , (eat breakfast an hour later )

62.5mcg at bedtime WITH Rooibos/milk (at least 3 hours after dinner)

This does not stop my levo working , but it probably does mean my prescribed dose is a little higher than it would be if i took it on a totally empty stomach .

Tala76 profile image
Tala76 in reply to tattybogle

I did not mean dies not work, it completely. It reduce the function. I used to eat walnuts . No matter of time and its gap with levothyroxine. I used to take calcium and iron at least 5 hours gap. But my body reaction was different as I was getting excessive sweating over nights. After 3 years living with hypothyroidism, now I know the some stuff I need to cancel completely because my body is different. The absorption of medicine is also depends on the person's body.

It dies not matter what is recommended to take iron and calcium at least with 4 hours gap. Mine even with the ten hours gap impact on the absorption and function of the tablet , then I get other side effects.

So nothing is 100 % .

Personally now I am more aware of my drink and eating foods veg, nuts and everything and I get straight away the idea of is it good for me or not.

Your body is yours and you know better than everybody else. Something might works for me that it dies not for you.

Here it is just sharing experience and what we know.

Living with long term condition is not easy and underactive thyroid one is a tricky one as it effect on the whole body.

I cannot not see any single organ of the body that this thilyroid does not effect and each individuals have their own characteristics with different function.

Good luck to everyone.

GeorgieandBlu profile image
GeorgieandBlu in reply to Tala76

Thank you for sharing your experience of living with thyroid issues. As you have said, we are all different, and what works for one person may not work for another. Good luck with your ongoing treatment. 🌸

Nicinha19 profile image
Nicinha19 in reply to Tala76

I totally agree!!!!❤️

Medically speaking, "on an empty stomach" equates to at least 4 hours after food, si if you take your levo at night, it needs to be taken 4 hours after your last meal. I had to stop doing this as I was always tempted by a late evening snack.😁 However, now I am intermittent fasting, I have been able to revert to my preferred evening dosing.

Tala76 profile image
Tala76 in reply to Tala76

uclahealth.org/endocrine-ce....

If it were me I wouldn't increase my T4, reason is your FT4 is ideal its your FT3 that's low, I'd say your RT3 ( reverse t3) is higher than ideal, it's also possible you have adrenal fatigue/high cortisol, but needs checking.

Also you might want to check your Iron/Ferretin levels as its more than likely low, common on Levothyroxine and sometimes throwing the iron-copper-zinc levels out, these 3 need checking to see if they are out or not.

Your vitamin D3 is good, and needs keeping there if you can for the full range of benefits from it...

Your cholesterol and CRP could be tied back, to your Liver with inflammation and candida in the liver, which is spiking your cholesterol a low glycemic diet of 55 or below on the Glycemic scale, incorporates most food groups like vegetarian, meat, fats etc not the sweet stuff and some foods unexpectedly...

Hope that helps

I am waiting on my test so I can test ferritin and iron levels. My GP has agreed to increase my tablets by 1/2 a tablet so I am now on 87.5mg. I will try the low glycemic diet, as I am concerned about the high cholesterol levels.

I have also managed to convince my GP to give me a referral to an endocrinologist so I can at least talk to a specialist about what is going on.

All positives! Thank you 🤗

Hope this helps

Understanding HDL LDL Cholesterol "High cholesterol" is a misnomer in that cholesterol is not the issue. HDL and LDL, so called good and bad "cholesterol" respectively, are not cholesterol. They're not even fats. They are proteins made in your liver. Cholesterol, a critical building block for your hormones, brain neurotransmitters, and cell membranes, is also made in the liver...

The HDL transport protein attaches to cholesterol and delivers it from the liver to the rest of your body. Any left over cholesterol is picked up by the LDL transport protein and brought back to the liver. If there is liver inflammation from yeast overgrowth, there can be overproduction of anything normally made in the liver.

Being vegetarian does not mean a person eats vegetables. For many "vegetarians" the issue is not eating animals. It's not about health. If you have a high sugar/grain diet, you will promote yeast overgrowth and develop inflammation. If the inflammation occurs in your liver, you may see elevations in: LDL,triglycerides, liver enzymes, ferritin,CRP, or clotting factors.

Bigger red flag than elevated LDL is elevated liver enzymes (SGOT/SGPT). These numbers should not be over 25.

Dr Roby Mitchell.

If you go to this link :

intercom.help/thrivahelpcen...

it tells you how to download or get a printout of your results.

What you need to do to get the simplest output including reference ranges is to make sure you get a PDF file of your results.

Oh, that's better! thank you so much humanbean. Should i amend my post with this information?

C Reactive Protein (high sensitivity) H 3.54 <3.0 mg/L

Cholesterol H 6.8 <5.2 mmol/L

Triglycerides H 3.10 <2.0 mmol/L

Non-Fasting: <2.3 mmol/L

HDL Cholesterol 1.71 1.0 - 3.88 mmol/L

Non HDL Cholesterol * H 5.09 <4 mmol/L

LDL Cholesterol * H 3.7 <3.4 mmol/L

Cholesterol:HDL Ratio * 3.98 <4.0 Ratio

Triglyceride/HDL Ratio * H 1.81 <1.74 Ratio

Thyroid Stim. Hormone 1.61 0.270 - 4.2 mIU/L

Free T3 4.6 3.1 - 6.8 pmol/L

Free Thyroxine (FT4) 18.8 12 - 22 pmol/L

Thyroglobulin Antibodies 90.9 0 - 115 kIU/L

Thyroid Peroxidase Antibodies H 116.7 0 - 34 kIU/L

Total Thyroxine (T4) H 159.0 59 - 154 nmol/L

25 OH Vitamin D 105 75 - 175 nmol/

You could edit your original (first) post in this thread if you wanted to. Just click on More under the post and then click on Edit then make your changes. Don't forget to Post your changed version.

Hi GeorgieandBlu

I just wanted to add to the others comments and say I get palpatations when I increase my dose. It does pass but can take a few weeks.

Obviously I don’t know how severe yours are but mine can happen several times a day, even at night when I think they are more noticeable because you’re literally lying there!

The higher my dose the longer they seem to last. I would also add that I can get them when undermedicated too. It’s tricky to get the right dose but the symptoms you describe of joint pain etc are symptoms many experience including myself.

I would go with Lalatoot. She is spot on. It’s tough finding what suits you and the temptation to throw the towel in can be high but you have to have faith that you can feel better.

Btw, you’re correct you do need to take your levo away from food/caffeine. If you only wait 30 mins that’s ok but make sure you’re consistent. I take mine an hour before I rise. Some prefer to take theirs on an empty stomach before bed and believe they sleep better. Doesn’t work for me though. We are all different.

It's good to know I'm not the only one having a nightmare with the meds, The last time I had palpitations my GP thought I was having a heart attack and sent me off to the hospital to be monitored. Hence my reticence to keep going on the meds.

SeasideSusie profile image
SeasideSusieAdministrator

GeorgieandBlue

Thriva have a very confusing way of displaying the results in their bar graphs, the only important bit is the normal range which is the green part of the bar (both light and dark green). It's much better to ignore the bar graphs and use the pdf version which has the proper ranges.

You can find your results with their normal ranges as a pdf by using the "view printable results" button on your dashboard.

Your results will then look like this:

healthunlocked.com/thyroidu...

So using their normal ranges this is what your results are using the ranges that we have seen posted previously, where I don't have the ranges I'll reply with information known to be reliable:

CRP 3.54 mg/L

The range for this is usually <5 or <10.

CRP is an inflammation marker so the lower the better and as close to zero as possible. Your result shows there might be a bit of inflammation somewhere.

Vitamin D 105nmol/L

The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.

Your result is pretty good and you may be able to make Vit D naturally from the sun during the summer months.

FT4 18.8 pol/L [12-22]

Your result is 68% through range which would be a good level for most people. However, it does depend on when you took your last dose of Levo. For an accurate measure of your level last dose of Levo should be 24 hours before test. Any longer and you get a false low result, take Levo before the test and you get a false high result.

When did you take your last dose?

TgAB 90.9kU/L [0-115]

TPOAb 116.7 kIU/L [0-34]

Your raised TPO antibodies confirm autoimmine thyroid disease, known to patients as Hashimoto's. This is the most common cause of hypothyroidism.

Did you know you have Hashi's?

TSH 1.61 mIU/L [0.27-4.20]

This would be too high for most hypo patients, generally we feel better when it's 1 or below but it's very individual so it could well be fine for you.

T4 159 nmol/L [59-154]

This is the Total T4 test and is not much help, it's the Free T4 (FT4) test that is more important.

FT3 4.6 pmol/L [3.1-6.8]

This is 40.54% through range which could be better.

If your Levo was increased this would increase your FT4 which in turn would increase your FT3.

Cholesterol 6.8 mmol/L (0-7.5)

HDL cholesterol 1.71 mmol/L (0-3.88)

LDL cholesterol 3.7 mmol/L (0-4.9)

Non-HDL cholesterol 5.09 mmol/L (0-4)

Total cholesterol 3.98:1 ratio (0-6)

Triglyceride/HDL ratio 1.8:1 ratio (0-3)

Triglycerides 3.1 mmol/L (0-4.5)

I'm not going to comment on these because high cholesterol is a symptom of hypothyroidism, when optimally medicated level should come down. Also, it's the triglyceride result that is most important not the cholesterol and looking at the range in the pdf linked to in the other post the range is shown as "<1.74". I don't know if any of those ranges have changed since that pdf was posted.

**

Did you have B12, Folate and Ferritin tested? All key nutrients need to be at optimal levels for thyroid hormone to work properly. Ferritin in particular is said by some experts to need to be 90-110ug/L for good thyroid function.

**

I have to reduce my meals to breakfast and a light supper.

That's not helping. Check what Lalatoot has said about calories in her reply above.

Estradiol HRT tablet, gel and pessary.

Are you taking your HRT as far away from your Levo as possible. It's known that HRT can affect absorption of Levo and adjustment of dose may be necessary.

I'm thinking of stopping my Thyroid medication as I don't feel any better on it.

Not a good idea, as you will glean from Lalatoot's experience if you read her other post.

You have 3 different brands of Levo there. Whatever you are taking at the moment may not suit you. It's best to find a brand that you do well on and then stick to that brand. Either ask for that brand to be written on your prescription or ask the pharmacy to make a note only to dispense that brand. Check your bag at the pharmacy counter, if it's not your preferred brand hand it back and ask them to give you the brand requested, if they can't ask for your prescription back then find a pharmacy that can dispense that particular brand.

Thank you for the comprehensive breakdown. I waited 24 hours after having my Levo before I took my blood 2 days ago so that I could get an accurate analysis.

I have never been told by my GP that I have Hashimoto's disease but I have gathered from others on this site that it's more than likely what I have.

I didn't have B12, Folate or ferritin tested this time. Does it need to be done on every occasion I have my thyroid tested?

I have only ever been on Levothyroxine, I will ask my GP whether I can be put onto another brand to see if it helps with my symptoms.

SeasideSusie profile image
SeasideSusieAdministrator in reply to GeorgieandBlu

I didn't have B12, Folate or ferritin tested this time. Does it need to be done on every occasion I have my thyroid tested?

No. Once they are optimal then once, maybe twice a year although if supplementing with Vit D this should be tested twice a year.

I have only ever been on Levothyroxine, I will ask my GP whether I can be put onto another brand to see if it helps with my symptoms.

Levothyroxine is not a brand, that is the medication. The brand names in your picture are Northstar and Wockhardt, I can't see what the brand name is of the box at the back.

I am currently using 25mg of Wockhardt uk Ltd and 50 my of MA Holder: TEVA UK Ltd.

SeasideSusie profile image
SeasideSusieAdministrator in reply to GeorgieandBlu

Georgieand Blu

Teva is a brand that many members don't get on with and causes them adverse reactions. If I were you I'd ditch the Teva and see how you get on with one of the other brands. You could have 3 x 25mcg Wockhardt to give you 75mcg daily. Or try Accord or Northstar or Almus (all made by Accord and are exactly the same tablets just in different packaging for different pharmacies) 50mcg and take one and a half tablets to give 75mcg daily. Once you've found a brand that suits you then ask for that to be dispensed every time.

SlowDragon profile image
SlowDragonAdministrator in reply to GeorgieandBlu

Beware Northstar 25mcg is Teva brand

Accord don’t make 25mcg tablets

SlowDragon profile image
SlowDragonAdministrator

As you have high thyroid antibodies this confirms autoimmune thyroid disease (hashimoto’s)

GP should test for coeliac disease

Have you had coeliac blood test done by GP?

If not request they do so

Have you had B12, folate and ferritin tested in last year?

What vitamin supplements are you currently taking

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

Can you work out which brand levothyroxine suits you best

Then always request this brand

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

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

I have asked my GP to test me but he said I don't have any symptoms so he won't do the test.

I had the following tests in 2021:

B12 64.0 (37.5 - 188)

Folate 7.2 ( 8.83 - 60.8)

then in 2020, I had Ferritin 73.2 (13 - 150) and I haven't had them tested recently.

SlowDragon profile image
SlowDragonAdministrator in reply to GeorgieandBlu

B12 and folate too low

Have you been taking daily vitamin B complex since these results?

Remember to stop taking any supplements that contain biotin (like B complex) a week before all blood tests as biotin can falsely affect test results

You need to test folate, ferritin and B12 annually

My GP told me to stop the vitamins when I had to take methotrexate and sulfasalazine. so I haven't been on anything for a while.I will ask to have these tested or I will get them done privately.

SlowDragon profile image
SlowDragonAdministrator in reply to GeorgieandBlu

Meanwhile try increasing levothyroxine to 87.5mcg. Either 75mcg and 100mcg on alternate days, or cut 25mcg tablet in half to get 87.5mcg every day

Retest thyroid and vitamin levels 6-8 weeks after this

You may need further small increase…

Come back with new post once you get results

Hi, I am sorry for your suffers. I think it is not a good idea to stop your tablets sufdenly. As it will be another shock for your body. Hormones and stroids needs to be reduced slowly and then stop. It would not be a good idea to stop them suddenly. I am on levethyoxine too. I suffered a lot that i liked to stop my tablets too. Especiallymy gps made me from hypo , to hyper over 8 month, then extreme hypo again. With private consultant now i am in the right direction. I felt tired exhausted and using all kind of supplements multivitamins, omega3, calcium plus vitamin d. Zinc and magnesium, kologen, and some more. My joint were in pain. My sole , lack of sleep.

Suddenly I decided to not take my supplements. As soon as I stopped I felt better since Christmas. Then I bought hashimoto's thyroiditis ( root cause ) . It helped me to understand about my diet. I realised lots of problem was caused by my diet. Then I got another book which is 35 years research in more than 100 countries, The China Study, helped me to understand how my diet effected on my body.

I was 56 kg. And before Christmas 65.but now it us going down gradually.

These 2 books help you for diet.

Now it us near 5 month I stopped supplements. My join paint is much less., my sleep is better. Now more than a month I have not sweated.

I found some supplements and foods effected on levethyroxin's function. I reduce my milk, cheese and meat.

You will be shocked how your life effected by your diet.

GeorgieandBlu profile image
GeorgieandBlu in reply to Tala76

Thank you Tala, I will look at my diet and my supplements to see if this might help. 🌸

Wouldn't advise stopping, you are hypothyroid and need replacement hormone

What stands out as a possibility is that your FT3 is too lowT3 is the active thyroid hormone and for good health a constant and adequate supply needs to reach the nuclei of the cells from the blood

Low cellular T3 = poor health.

It might help to increase your levo dose this should convert to extra T3 so raising your FT3

You have plenty room to increase

You will not be overmedicated so long as FT3 is in range

Medics tend to dose by TSH which science proves is wrong.

You may need to increase by small amounts...and slowly...to allow the body to adjust.

When adequately medicated your cholesterol should drop.

No vit B12, folate or ferritin results...these need to be optimal

TPO antibodies are high...gluten free diet may help.

Just a few thoughts.

Thanks DippyDame, I had previously tried a gluten free diet and there was some improvement. I think I will give it another try and increase the level in increments of 10mgs to see how feel. 🤗

GF helps a lot of people,

I don't have Hashi's so have no experience of GF

It will take 6/8 weeks for levo increase to settle so give it time

Low and slow!

You may even feel worse before you feel better!

Are you prescribed folic acid along with methotrexate?

Good luck.

I stopped taking the Methotrexate and the Sulfasalazine as I experienced terrible side effects. I was also prescribed folic acid at the time.

SlowDragon profile image
SlowDragonAdministrator in reply to GeorgieandBlu

Methotrexate and the Sulfasalazine

What were these prescribed for?

They were trying to control the uveitis and joint pain. The rheumatology dept are yet to diagnose why I have the joint pain, they haven’t got the foggiest even after carrying out extensive tests.

Would it be possible for you to send me a link to an endocrinologist who might initially see me privately and then treat me on the NHS? I might then get some answers. Thank you 😊

SlowDragon profile image
SlowDragonAdministrator in reply to GeorgieandBlu

First step is ALWAYS get FULL thyroid and vitamin testing done

Medichecks or Blue horizon recommended option

Medichecks test on offer today

You can buy ahead - ready to test 6-8 weeks after increasing levothyroxine to 87.5mcg daily

healthunlocked.com/thyroidu...

Only do private testing early Monday or Tuesday morning, ideally before 9am and last dose levothyroxine 24 hours before test

Try to always stick with one brand levothyroxine

Joint pain is frequently

Inadequate dose levothyroxine or poor conversion of Ft4 to Ft3

Currently your Ft3 is too low

Increasing levothyroxine dose should help

With Hashimoto’s

Gluten or wheat intolerance frequently causes joint pain

You don’t need any obvious gut issues to still be extremely gluten intolerant

But getting coeliac blood test done BEFORE cutting gluten out always recommended

As GP being unhelpful

lloydspharmacy.com/products...

You might find my profile info helpful

I had absolutely no idea I was gluten intolerant

Thanks I’ll sort something out today and order tests.

klr31 profile image
klr31 in reply to GeorgieandBlu

Have you had your D checked as low D can cause pain?

Karen

GeorgieandBlu profile image
GeorgieandBlu in reply to klr31

Vitamin D result is fine. 😀

DippyDame profile image
DippyDame in reply to SlowDragon

Sulfasalazine is used to treat RA and inflammatory bowel disease Methotrexate is an immunosuppressant...also prescribed for RA

Folic acid has to be prescribed with Methotrexate ....only know because my husband takes both for RA!

Apologies Gand B for jumping in here!

I had folic acid and calcium supplements at the time of taking this medication.

If increasing levo close to top of ref range makes little difference to your FT3 then there is the option to try adding a little T3.Your T4/T3 conversion could be better, so if you reach that point you could use this as case for a prescription

I exhausted the T4, then the T4+T3 options and eventually discovered that I need the last resort... high dose T3.

It can be a long frustrating slog but there is usually an answer ...though along the line you may need to take control.

I'm not suggesting that this is what you need to do....just trying to point out that all is not lost if levo or even T4/T3 combo fails

A lot of my pain resolved after I found my therapeutic dose of thyroid hormone as did other symptoms

I also lost a lot of weight

However, you will most likely find that slowly increasing levo dose works.

You may also find that your body prefers having the dose at a different time of day ( away from food and drinks as already explained by Susie

Morning

Evening

Bedtime

Split doses throughout the day

It's basically trial and error ...and a determination to succeed and not to be sidetracked by wrong advice from (some) medics

Please keep us posted.

Thank you for your reassuring words, I'll give it a go.

I would like to add that the only sound advice I have ever had is from individuals on this site. I am so eternally grateful to everyone on here for helping me to understand the endless lab results, sending me interesting links and navigating me through the maze of literature.

Thank you so much. 😍🌸

Ditto. Some of these gals put the so called experts to shame!

Weight gain is very upsetting, I watched my weight increase by 2 stone over two years and nothing would get it back off again. I got my thyroid levels close to right on Levothyroxine at the start of this year, cut out snacks and reduced the amount of food I was eating. At first I lost a little weight, then it stopped. My daughter has been working with a personal trainer for some time and she told me that strict dieting can actually make the body hold on to fat stores. Increasing the amount of food I eat has seen my weight drop by over a stone since January 9th. It may be that you’re not eating enough to lose weight.Getting your medication dose right, your thyroid levels optimal, and making sure that your B12 and D are also optimal will help you feel much better.

Lots of good advice here. For me, I think you’ve got all the information you need. A small dose rise should help - no need ti split dose but do wait an hour before eat g and drinking to get it fully absorbed

I have been taking 100mg daily for decades. One thing l have learned over the years, is that " normal " in respect of blood tests does NOT equate to symptoms! Palpitations, depression, weariness, mood swings and a plethora of mixed physical and mental presentations are all related to the magnificently important thyroid. There still seems to be differing opinion as to WHEN to take thyroxine. Of late l take mine just prior to going to bed and found it improved symptoms. For at least 30 years l have experienced fluttering heart, rarely ectopic beats which coincided with a near faint - all of that addressed FOUR TIMES with 24hr heart monitor which resulted in " normal " on all counts. I suppose that at 74 l can cycle a 12 mile route three times a week and not feel puffed answers speculation on that front. My late rather wonderful doctor had an interest in the endocrine system and he once told me that a tricky thyroid can respond positive to physical activity he said " hit a punch bag" to release certain thyroid related tensions etc.As to stopping Levothyroxine l would NEVER do anything without consulting my GP. The thyroid governs more or less the whole system and deserves respect at both personal and clinical levels. Good wishes on progress.

Hi their I wouldn’t come off them but you really need to go back and find out what is causing it I struggled for ages untill I finally took my health and made it a priority most thyroid issues are almost always linked to inflammation try cutting out processed food and dairy it’s hard but I have lost 1 1/2 stone since Christmas it is doable but you have to be prepared to research and and find the root cause try and heal your thyroid doctors I’m afraid are not very good with their help I wish you success

I can affirm that this is not straightforward, anyone with a thyroid condition and will confirm this. My health has always been paramount to how I live my life. I have had numerous operations and treatments since the age of 18. You need to always have at the forefront of your mind that whatever medical intervention you may have, can also adversely affect you.

I have tried every diet under the sun; I have attempted to take vitamins and had to stop them for medical reasons. I have been to my GP, a private doctor and a homoeopath. They either have no idea or are entirely perplexed by my multiple conditions.

I am not naive enough to think there is a happy pill that will take away all of the pain and suffering. However, I would like to find a happy medium to be able to function on a daily basis. I try to work full time, but this is not always possible as my health lets me down.

I am a positive and forward-thinking person and there have been very few things in my life that have got me down. I am trying to find something that works for me and this site and the people who give advice enable me to take control of some areas of my health. 🌸

I take my 50mcg in a morning as soon as I get up and the 25mcg when I get in from work on empty stomach and my symptoms have improved doing that. I used to feel terrible when I used to take both tablets in morning.

Maybe could your micro biome be out of whack you say you have had operations and issues all the new studies about micro biome could just hold some answers your right we all need to help each other and in doing so maybe something will help

I hope you find a solution. I take 125mg in one go in the night. Only way to have a empty stomach. Can't take it on getting up, as that means I have to wait another 4 hours before being able to have a cup of tea or my other medication or vitamins and eating. I can't live that way. But Levothyroxine has never restored me to my old slim self. Far from it. And my health has gone down hill. I have most underactive symptoms while on Levo, yet had none before being diagnosed aged 39 by the post. Still don't remember even having a blood test. My Gps take no notice and just keep saying I have allsorts of ailments. But I have discovered that in most cases it's the prescription medicines that cause most things. I have read levothyroxine can cause side effects. Like weight gain. But I never stay off it long enough to really test that out. High chloesterol is something to do with the thyroid. Levo clashes with everything but water by the looks of it. I take Omprazole, so not happy to hear it clashes with that as well. I have to keep it away from my HRT and my tea which is lethal. And being vegetarian it clashes with that as well. I can see why you want to stop it. That's my argument as well, as it never works. And GPs seem to know nothing on this subject. I was in hospital last November, and first they kept trying to get me to take my thyroid tablets at breakfast and with omprazole and HRT. When I told them I can't do that, the nurse took my Thyroid tablets away and was left for days with none. Day I was discharged, the Doctor said my thyroid levels were wrong and I needed to go upto 150mg. Doctors are susposed to always start you on low and build up by 25mg each time to avoid heart issues.

Thank you, I will keep trying to find an answer. Oh, it sounds as if you’ve also gone through it! How these professionals aren’t aware of what medicines do and do not interact with each other, is beyond me. Surely they have the BNF and BMA books to retrieve such information from.

As a matter of interest how long have you been on HRT? I hope you don’t mind my asking. I do believe there is a connection between the menopause, HRT and thyroid problems.

It’s amazing how many women I have spoken to, who are on HRT or have just started the menopause, and are now having thyroid issues.

You would think that hospitals and GP’s would know how to treat this illness, it’s not a rare condition!

Take care of yourself. 🌸

I'm really sorry you're feeling this way. Please read my story and do not stop your medication. I suffer from primary hypothyroidism for about 30 years now. I was feeling the same way as you for at least two years! After I moved to the UK from Brazil, I started feeling really ill, I had joint pain that got so bad to the point I could barely hold my baby in the morning. I also experienced extreme lethargy in the morning and after lunch, horrible palpitations, quick weight gain, brain fog and things got worse to the point I was feeling depressed. My GP requested all blood tests she could to rule out other causes for my symptoms, but all the results appeared to be normal. She then referred me to an endocrinologist who basically spent less than 30 min. with me over the phone and completely dismissed my symptoms. I insisted telling him that I had read the new prescribing advice for patients who experience symptoms on switching between different levothyroxine products* and I was concerned my problem could be related to the fact I was having 3 different brands and formulas to compose my 137mcg daily dose! He didn't change or suggest any other brands I could try and said that oral solution was too expensive for me to try although it's very clear that you can have it prescribed in case you don't adapt to any brands or formulas available. I tried to remove Teva which has mannitol, but nothing changed. My GP prescribed me only Eltroxin, which was exactly the same generic formula I was having, but with Eltroxin I could not achieve my ideal dose of 137 mcg. After trying everything available here in the UK, I gave up levothyroxine to see how I'd feel, as I was sure it was the medication causing all the symptoms I was experiencing and I felt great in the beginning. All my symptoms gradually disappeared! But then after about two weeks things got really bad. I had no energy at all and my body started swelling up. My TSH reached 100! I already had booked a flight to visit family and friends in Brazil, so I arranged an appointment with my usual endocrinologist. When I told him what was going on and showed him the medication I was taking here, he got perplexed. He said I could never have mixed formulas and advised me to never cut levothyroxine tablets as they are micrograms. I went back to my old Synthroid (Abbott) that I had taken for years before moving here. My endocrinologist also detected I could not have stopped taking metformin to control my insulin, I'm not diabetic but hypothyroidism can cause insulin resistance and it's very difficult to keep my weight without it. It took me over two months to start feeling better. My blood tests are amazingly perfect, I feel great, stable, lost 6 kilos so far, no more oscillations on my T4 and T3 which proves I'm converting well. I could risk to say that many people on T3 here are simply not coping with the levothyroxine available here. Synthroid has proven to be a very reliable levothyroxine in my opinion and my story can testify that not all levothyroxine is the same as many pharmacists and endocrinologists still believe, brands matter. Our community needs to stand and fight for the approval of more brands and doses here in the UK. I intend to supply my own levo, once Synthroid is not available in the UK.I hope you find the cause of your symptoms, but please consider trying a reliable brand of levothyroxine and see how you feel.

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

Reports considered by the review

Levothyroxine is one of the most commonly prescribed medicines in the UK. Between 1 January 2016 and 31 December 2020 there were a total of nearly 260 million packs of levothyroxine dispensed against a prescription in UK retail and hospital pharmacies. [footnote 1]

For the 5-year period between 1 January 2015 and 31 December 2019, the MHRA received 335 Yellow Cards reporting one or more of the terms ‘product substitution issue’, ‘condition aggravated’ or ‘drug ineffective’ with levothyroxine. The majority of reports were received from patients rather than healthcare professionals, with 47 of the cases having a healthcare professional reporter. Associated symptoms were mostly consistent with hypothyroidism or hyperthyroidism, and included fatigue, headache, malaise, anxiety, palpitations, pruritus, nausea, myalgia, dizziness, arthralgia, feeling abnormal, alopecia, depression, abnormal weight gain, and insomnia.

Thank you for your concise explanation; this is most helpful. Do you have an endocrinologist you use here in the UK? I am struggling to be referred and feel that I need to see a professional that understands the condition.

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