RA....

[TeresaE1971]

Hi, anyone got any tips on things I could introduce into my diet as the Levothyroxine seems like a waste of time. Also have mentioned what I believe are possible side effects but my doctor is not that interested just said keep taking it, tia.

[Jaydee1507 Administrator]

Welcome to the group and thank you for completing your profile.

You say that you are on the highest dose of levo so what dose is that because I'm not aware that there is a maximum dose as such?

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

There are several reasons that Levo might not work to its fullest potential. The way you take your Levo is important to enable maximum absorption.

Levo should be taken on an empty stomach, 1 hour before anything other than water. Many members find taking it at bedtime works well for them.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Do you do the test as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

[TeresaE1971 in reply to Jaydee1507]

Hi Jaydee,

Thank you for replying, I must admit I'm a bit gobsmacked, I was not aware of pretty much everything you have said in your post!

I am on 125mg of Levothyroxine & have been since shortly after I first started taking blood tests, I started at 25mg sometime around early 2016 & felt like I had had a dose of speed, I was doing all sorts I don't usually have that much energy but as the dosage went up I felt like I was just popping another pill, I just take it out of habit to be honest, I don't feel it does anything for me now.

I've never received or been told I could have a copy of my blood tests, they just say if there is anything to worry about we will change your dosage. I will ask next time now though & post it on here.

I also was not aware I could ask for the same brand of tablet, it is always different, thinking about it though I made a strong case to my asthma nurse 1 time & she changed me from Salamol to Ventolin. I just thought you got what you got because as a country we was getting our prescribed drugs from the cheapest supplier every time.

I take my Levothyroxine every morning on an empty stomach when I get up along with an asthma inhaler & 2 asthma tables, (from the Chinese doctor they are herbal & I feel like they have eased my asthma significantly), I swallow with water, usually a good hour or more before I have breakfast.

After breakfast I take 1 x Antarctic krill oil 500mg, (should be 2 but I'm running low), 1 x advanced Multivitamin & mineral complex (27 essential nutrients), 1 x Ashwaganda with black pepper 500mg, 1 x Magnesium 500mg, 2 x Lions mane focus+, 1 x Biotin & a few grains of Celtic sea salt, washed down with green tea. (I know should be water)!

I don't take anything for the RA which the Chinese doctor diagnosed (not my personal doctor at the surgery), in around early 2018 when I walked into his office limping I really thought at that point I would end up in a wheelchair until he fixed me!, I just try to get by with specific exercises on my knees unless it is really bad, I was diagnosed with this after the thyroid. This is mainly dependant on cold weather though, I am much happier in the sun, I hate the cold I've no energy for anything I feel every draught & my bones ache.

Next time I go I will ask my GP, more likely will see the nurse though as she checks my asthma when I am there as well as taking bloods & ask if she will test for levels of ferritin, folate, B12 & D3, (I'll have to take a screen shot of your post, will never remember all of this info).

Unlikely to offer a walk in service in my area will check though thank you.

Nobody has ever recommended a protocol for my tests, I usually prefer to make an early ish appointment depending on when the nurse is at the surgery, between half 9.30 & 10 as transport can be an issue in my area. No fasting just whatever I had up until the night before, rarely have time for breakfast before going to the doctors, as I say I take the Levothyroxine every morning & have never been advised any of this information you have provided. I will now have to be super aware of when I take the Biotin also.

I have never seen an endocrinologist. I do feel tired all the time though, & struggle when the weather is cold with general day to day things, I just don't have the energy. A couple of years ago, during lockdown, I mentioned to the doctor about my heart rate going through the roof also when walking great distances especially uphill or climbing my stairs, (I sleep in the attic/loft conversion), he said it was fine though nothing has really changed since then. I also wear stockings as my ankles/sometimes my legs to just below my knees swell too, not sure if you needed that extra information though.

Thank you again for your post, I feel a lot more armed & informed : )

Teresa

[Jaydee1507 Administrator in reply to TeresaE1971]

125mcgs Levo is certainly not the 'maximum dose'. I think about 200mcgs is a high dose and occassionally people take a little more than that but its uncommon.

Sometimes its not always more levo that we need. There are plenty of tweaks to be made that can improve how you feel on the dose you are currently at, although its possible that you may need more or even adding T3 if it turns out that your body doesn't convert T4 (levo) to T3 the active hormone. The NHS doesn't always believe in peoples need for T3 but we'll cross that bridge of it comes to it.

Step1: get hold of your latest results with the reference range - numbers in brackets after your result and post them in a new post. If you can get the NHS APP or access to a website like PatientsKnowBest that shows you your results then so much the better.

Step2: Ask GP to check your vitamin levels and start a new post with them for members to make suggestions.

Step 3: Change the way you take your Levo. It literally needs to be taken on its own with just water. No chinese medicine supplements or other meds with it at all. Bedtime suits many.

As far as dietary changes go the main one/s would be trying a strictly gluten free diet if you have the autoimmune form of hypo with positive antibodies aka Hashimoto's. Some Hashi people also find removing dairy helps how they feel.

A good whole food diet with a wide variety of fruit, vegetables and meat with low amounts of processed foods is a good thing.

You can definitely feel a lot better than you currently do. Don't give up on Levo, in fact if you did you would feel terrible after a short while.

Some of the tips that you read here are patient to patient tips and no doctor or nurse will have heard of them but they can make a huge difference to how you feel.

Multivitamins are not recommended in this group due to a number of reasons, including being too lower dose to raise levels to optimal, poor quality, inactive ingredients, containing iodine thats not recommended etc

[Scotlad76 in reply to TeresaE1971]

I took an ashwaganda containing product once...never again it out me in a mega flare of fatigue, muscle pain and brain fog lasting about 3 months.

[greygoose]

From what you say it would appear that you are not going to be absorbing you levo very well:

I take my Levothyroxine every morning on an empty stomach when I get up along with an asthma inhaler & 2 asthma tables

Levo should be taken at least two hours away from all other medication. So, the asthma tablets could be affecting absorption of levo.

After breakfast I take 1 x Antarctic krill oil 500mg, (should be 2 but I'm running low), 1 x advanced Multivitamin & mineral complex (27 essential nutrients)

Multi-vits are never recommended on here, for all sorts of reasons. For one thing, if it contains iron, it will block the absorption of all the vitamins. Iron should be taken at least two hours away from everything else, except vit C - four hours away from thyroid hormone.

1 x Ashwaganda with black pepper 500mg, 1 x Magnesium 500mg

The ashwagandha could be lowering your cortisol level, which won't help you at all. Have you ever had your cortisol tested?

Magnesium should also be taken four hours away from thyroid hormone.

So, these could be some of the reasons levo doesn't seem to be helping you anymore.

[SlowDragon Administrator]

Which brand of levothyroxine are you taking

Definitely look at working out which brand you prefer and always get same brand

Have you ever had thyroid antibodies tested?

You need both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

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)

Stop ALL supplements that contain biotin 5-7 days before any blood tests as biotin can falsely affect test results

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

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

Multivitamins never recommended on here

And don’t take ashwagandha without getting cortisol and DHEA tested first

Suggest you stop that and multivitamins then wait 6-8 weeks before testing thyroid levels correctly

You could in mean time just take daily vitamin D at say 2000iu

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Your asthma inhaler will very likely lower TSH

Absolutely essential to test TSH, Ft4 and Ft3 together

[BlueKeith]

I'm on 125mcg of levothyroxine and took a long while been on it till I felt good. My doctor has now said she will increase it if I think I need it but as my tsh is 0.8 so she said keep it as it is for now. I was thinking of stopping taking levothyroxine when I was on 50mcg right up to 100mcg but glad i didnt niw . What was your tsh?

[TeresaE1971]

Hi all, thank you so much for all your replies, I'm so grateful but a bit overwhelmed to be honest & still trying to get my head round all this information. I'm not ignoring anyone but I have a lot to speak to my doctor/nurse about & when I have some information to give you I will reply to all