no improvement in a year

[Gilbert2023]

simple question, just wondering why after a year on levothyroxine my weight hasn’t gone down at all only up , please no replies asking for info on vitamins etc as they’ve all been at appropriate levels for months and recent Tsh is 3.58 so I know my gp will reduce levo soon ! Is it possible I’m completely barking up the wrong tree ?

[Gilbert2023]

sorry , recent Tsh is 0.38

[helvella Administrator in reply to Gilbert2023]

helvella - Editing HealthUnlocked Posts/Replies

Having read a post or reply, I've noticed that you might wish to correct your post or reply. For example, you might have followed up with a reply to correct a mistake.

If you edit your post, the follow-up would not be required. Making it easier for people to follow.

This is not to say you have done anything wrong. This is meant to help you by pointing out this option, and help you to do so, not to criticise.

There is no need to reply to this! If it was helpful, ticking the "Like" button lets me know.

Follow the link below for details

Last updated 17/12/2024

Link to blog:

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

[Gilbert2023 in reply to helvella]

It’s helpful I just couldn’t figure out how to edit my own post , thanks

[Jaydee1507 Administrator]

Why will your GP reduce your Levo when your TSH is well above 1?

Some GPs are very conservative and keep the TSH just within range, even at the top of the range but to lose weight and be well we need it at or below 1.

There are other factors as you know such as good vitamin levels and also if you are converting T4 (Levo) to T3. The NHS doesnt usually test for this so its down to us to do that with a private blood test.

In the first instance you need to persuade your GP that you need a dose increase. Ask for it as a trial which often goes down better.

[Gilbert2023 in reply to Jaydee1507]

sorry , recent Tsh is 0.38

[Jaydee1507 Administrator in reply to Gilbert2023]

Whats the reference range for TSH?

What time of day was the test taken? This is important as TSH varies throughout the day & highest TSH is at 9am or earlier.

Suggest you buy a private test to check your conversion of T4 to T3 & vitamin levels.

[Gilbert2023]

test was done in the afternoon but I hadn’t taken my levothyroxine that day as I thought she might do a test , if I had I guess I would be blow her ( nhs ) acceptable range .

She’s not interested in t3 and said a referral to our local hospital wouldn’t get it either , agree medichecks is a good idea , I did it before just wondered if anyone had any idea why my symptoms haven’t changed at all , thanks

[Jaydee1507 Administrator in reply to Gilbert2023]

Always try for an early morning appointment or ask to retest if results arent to your liking.

Some areas can be almost impossible to get T3. If you can go privately should it be necessary then I would encourage you to do so.

If your thyroid levels arent optimal for you then it will be hard to lose weight. Cant really tell with just a TSH result though.

[Gilbert2023]

My gps message ,

your TSH is 0.35 which is within the normal range 0.3 - 4.5 but at the lower end of the range. You can continue levothyroxine 100mcg and recheck in 4 months

[SlowDragon Administrator]

Refuse to reduce dose

ALWAYS test early morning

What vitamin supplements are you taking

Get yourself a full thyroid and vitamin test

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

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

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

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)

NHS only tests TG antibodies if TPO are high

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)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Also VERY important to test TSH, Ft4 and Ft3 together

What is reason for your hypothyroidism

Autoimmune?

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)

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

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

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

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

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

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

[Nat107]

Hi Gilbert speaking on my own personal experience my weight has only gone up n up over the years with fluctuations here n there, many people on levo with hypothyroidism seem to have a battle to lose weight, even with levo, I have been on a permanent diet and really struggle with my weight for do many years so try not to stress about it and just heat healthy and if you are able excercise, I used to always be at the gym years ago but due to having ME I can’t go anymore, I hardly eat some days due to my condition but makes no difference on my weight, I still find it hard to lose weight so my advice would be eat healthy excercise if able and if your doing those things try not to worry too much unless of course you are very much overweight than speak to your Gp see if they can help as many things they can offer to help with your weight if needed x

[Obsdian in reply to Nat107]

Exactly the same for me. I try and focus on being healthier and not on my weight. I am still unhappy with my weight though.

[Nat107 in reply to Obsdian]

Hi yes I’m exactly the same, we know we are not overacting and eating healthy so I don’t think it’s worth the worry anymore just ends up getting you down doesn’t it, so best just to focus on what you eat rather than then scales as it’s really annoying to see you have lost nothing after doing so well and I think it can indeed take over your thoughts and have a negative impact on how we feel so I think we can only do what we think is best and just not focus on the scales as always used to really get me down, best to leave the scales alone for at least a good while

[Gilbert2023 in reply to Obsdian]

I know you are right but having been overweight for years and finally getting to my best weight since my 20’s I’m really finding it challenging, eat little , keep active and put on weight ? GP doesn’t seem to understand how demoralising it can be

[Gilbert2023 in reply to Nat107]

I understand what you are saying and appreciate replies coming from other people’s personal experiences, partly I guess the weight upsets me as the year before after a battle with alcohol I reached my healthiest weight in years and did everything I could to keep it under control

[Obsdian in reply to Gilbert2023]

I am lucky to have a GP that doesn't comment.

Be careful to not eat too low of calories aa that doesn't help thyroid symptoms either.. Which is frustrating. I find all those things drummed into our heads as all we need to do utterly infuriating sometimes.

I try to tell myself to pursue being healthier and something will happen with weight eventually. But in the back of my mind I think maybe it won't be what it used to be.

[Jokaah]

levothyroxine is NOT a weight reduction drug

[Gilbert2023 in reply to Jokaah]

I know ! But it should help with symptoms caused by underactive thyroid, in my case mostly constipation and weight gain

[McPammy]

weight can be gained or stubbornly high if your T3 level is too low. T4 levothyroxine sits in your body waiting to be released to make the most important hormone T3. T3 is the active thyroid hormone. T3 gives you energy and boosts your metabolic rate amongst virtually everything else in your body. T3 doesn’t make you lose weight, what it does is it gives you the energy to enable you to exercise even if that’s brisk walking. Overtime you’ll lose weight. I lost 4st after starting T3 liothyronine, just because I had the energy which I didn’t have previously. Check your T3 levels and see if your converting alright from T4. If you’re not then request T3 liothyronine medication. But you may well need to go private to get T3 for an initial 3 month trial.

[Nat107 in reply to McPammy]

I am on t3 myself and lost a little weight when starting it but once settled on dose it all came back to same as before

[McPammy in reply to Nat107]

That’s a shame. I lost 4st but I have put back on 7/8lbs of that now. But mainly stayed with dropped weight. I find T3 boosts my energy and I need to use it up daily. I do brisk walking daily and go on my cross trainer every morning for 30 mins. I use to go the gym but not doing that at the moment. I try to eat healthy too.

[Nat107 in reply to McPammy]

Think we are all different so some may lose a lot some may not, but you are exercising whereas I can’t with having ME/CFS so that lets me down but saying that I still struggled when I used to go to the gym every day, I was determined to lose the weight but really struggled but at that time I wasn’t on t3, I really miss going to the gym but it hurts me more than anything so glad you are doing good

[McMurtagh]

I’ve never enjoyed the weight loss some have experienced after starting on thyroid meds - not even on T3.

My mood, energy levels and general appearance did however improve greatly on T3.

The only thing that positivity affected my weight was stopping the Pill …….. and robust dieting and exercise.

[DippyDame]

It sounds as if your T4 to T3 conversion is impaired (high FT4 with low FT3)so your FT3 is possibly too low.

For good health every cell in the body needs to be flooded with T3 by way of an adequate and constant supply....this is possibly not happening

TSH is not a reliable marker.....it's a pituitary not a thyroid hormone!

Suggest you do a Medichecks test to establish thyroid status

[SlowDragon Administrator]

what were your antibodies results at last Medichecks test 4 months ago

Couldn’t see Antibodies results on that post

healthunlocked.com/thyroidu...

How much Levo are you currently taking…..100mcg?

Which brand

Retest see if B12 and vitamin D have improved

Always worth trialing Gluten Free diet

And dairy free few months later too.

[Gilbert2023 in reply to SlowDragon]

considering retesting with medichecks as GP will only test vitamins once a year

Test results and yes 100 of Levo

[SlowDragon Administrator in reply to Gilbert2023]

So definitely Hashimoto’s

Have you had coeliac blood test

If not get GP to do so BEFORE trialing strictly gluten free diet as per NICE Guidelines

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

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too.

Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

Recent research in China into food intolerances with Hashimoto’s

healthunlocked.com/thyroidu...

More interesting Chinese research on Hashimoto’s and leaky gut

nature.com/articles/s41598-...

[Gilbert2023 in reply to SlowDragon]

I was tested and it was negative but yes I could try that but I don’t eat much gluten mainly meat , fish , cheese , veg and salad

[SlowDragon Administrator in reply to Gilbert2023]

It needs to be strictly gluten free to be effective

Personally I have been gluten free since 2016 and dairy free since 2022. Would never go back to either

[mrskiki]

my weight went up a few stones then was steady - that was just before diagnosis, then another stone after starting levothyroxine. After optimising vitamins diet and some exercise but still very fatigued and I don’t think the weight will shift until I get my FT3 sorted and my energy back . I feel like I’m in and out of hibernation. I was going to go private last year but a bout of Covid and work problems have delayed sorting myself out.

[Gilbert2023]

so any recommendations for what I should do to try improve my symptoms?

Medichecks blood test I guess but any other advice

[Jaydee1507 Administrator in reply to Gilbert2023]

Recommendations were here: healthunlocked.com/thyroidu...

[Gilbert2023]

really wanted helpful replies , I can read