Hello I'm new here.

[AquaAuraAmethyst]

I was going to wait to poast until I had my test results but here I am. Just been told I have autoimmune thyroiditis. Don't think it's Hashi's because I don't think there's a goitre, but I was told a few years ago that my inner throat was swollen because of waterbrash (stomach acid coming up the oesophagus and hitting the back of the throat).My question is, that my TSH is 0 after about 10 years of hypothyroidism, but my T4 levels are fine (on 100mcg LT). Reduced my LT to 75mcg which is causing a rise in TSH, now I've been told my antibodies are high hence the diagnosis. I have been dieting for 10 months and have lost 1st 10lbs - it's been a struggle, but I can't have my much-needed hip replacement until I have lost another stone. How can I help myself lose weight in this situation?If there's any other comments you want to make on all this please feel free.

[Jaydee1507 Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start.

If you have thyroid antibodies you have Hashimoto's, if no goitre then its likely Ords. ada.com/conditions/thyroidi...

Either way you may be helped by trialling a strictly gluten free diet. A small percentage who benefit from going gluten free also need to remove dairy fromtheir diet to help symptoms.

Unfortunately dieting often causes changes in thyroid blood results. To lose weight it is better to optimise your thyroid levels and also key vitamins - ferritin, folate, B12 & D3 so that your thyroid hormone works better.

Do you have your blood results from before you started dieting? 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.

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/help-and-supp...

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.

Did 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, last T3 dose 8-12 hours before 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 falsley elevated result and your GP/Endo might change your dose incorrectly as a result.

[AquaAuraAmethyst in reply to Jaydee1507]

Hi thanks for your trouble in replying. Wow there's a lot to unpack!

I was given no instructions as to the blood test so I followed none of them. I shall have to stop taking my multivitamins! I took T4 8 hours before the blood draw. Not fasting, the hospital informs me they don't recommend any fasting tests these days for some reason. Not 9am as the GPpractice doesn't offer them and I open up at work for 8am so I couldn't do that either.

GP tested for ferritin, folate, T4 and reverse, T3 and reverse, B12, D3, TPO and other usual suspects (so she was able to tell me I don't have cancer). However, my liver levels are raised and I'm going to have a US because of an anomaly picked up on a chest Xray.

Gluten-free to be honest the idea appals me! I have had GF food in the past and I don't like it. It may have improved in the las 30 years I suppose!

I am on omeprazole taken twice a day for a hiatus hernia, been on it for over 20 years.

I will request my health records for the last 12 months: I was given a CD in 2020 when I had my left shoulder replaced and I get yearly updates since.

[Jaydee1507 Administrator in reply to AquaAuraAmethyst]

Multivitamins are not recommended in this group for a number of reasons, including being too low a dose to raise levels to optimal, including iodine which is not recommended when hypo and including iron which prevents absorption of the other vitamins and should be taken apart from other vitamins/Levo. It is much better to test specific key levels and supplement those to optimal levels.

Omeprazole will likely be further reducing your absorption of nutrients from your diet.

Gluten free food is widely available now and certainly a lot better than it was 30 years ago.

[greygoose]

Hi AquaAuraAmethyst, welcome to the forum.

Autoimmune Thyroiditis without a goitre is called Ord's Thyroiditis. And, apart from the goitre, it's the same thing as Hashi's. Doesn't make any difference to the treatment, anyway.

I was told a few years ago that my inner throat was swollen because of waterbrash (stomach acid coming up the oesophagus and hitting the back of the throat).

That doesn't sound quite right. The rising stomach acid would not come into contact with your thyroid. And it's more likely that your swollen thyroid - due to your immune system attacking it - was causing the acid reflux. Being hypo can cause low stomach acid, but the symptoms are the same as those of high stomach acid: i.e. acid reflux.

My question is, that my TSH is 0 after about 10 years of hypothyroidism, but my T4 levels are fine (on 100mcg LT).

You are still hypo, make no mistake about that. Your TSH is zero and your FT4 is fine because you are taking levo. The TSH is the least important of the three thyroid readings - once it gets below 1 it doesn't mean very much. The most important number is the FT3 and they don't even test that! But more important than the TSH is they FT4 and if that is 'fine' (according to whom?) then they should not have reduced your levo.

Reduced my LT to 75mcg which is causing a rise in TSH,

Well, it would, wouldn't it. But, why would you want it to?

How can I help myself lose weight in this situation?

You can't. In fact, having reduced your levo, you're more likely to put back on what you've lost.

Weight-gain when hypo has little to do with what you eat nor how much you exercise. It's usually a combination of water-retention and low metabolism. Weight-gain is a hypo sytmptom.

The T4 you are taking has to be converted to T3, the active hormone, before it can do anything. T3 is responsible for symptoms when it's too high or too low.

The fact that you had trouble losing the weight suggests that your FT3 was too low to begin with.

Reducing your levo means that your FT3 will now be lower, and you will therefore be more hypo and more likely to put on weight.

Plus the fact that you have been living on reduced calorie intake - dieting. We need calories to convert T4 to T3 - as well as for everything else our bodies do. So, the dieting could have had a negative impact on your conversion.

So, all that means that your FT3 is now probably very low and not condusive to weight-loss.

So, what can you do? I would say stop dieting, get your levo put back to the original dose, do full thyroid testing after six weeks and see how well you convert and if you need a further increase in dose. I realise that doesn't sound very encouraging, but whilst we have to struggle with such ignorant doctors, that's about all we can do. Sorry.

[AquaAuraAmethyst in reply to greygoose]

Thanks for the response, lots to read here.

The issue is the endocrinologist thinks the TSH is the main thing to keep at "normal" levels. I have another blood test coming up and I'll see what that says.

[greygoose in reply to AquaAuraAmethyst]

Yes, I understand that. Most of them do! But, then, an endo is often the worst person to deal with a thyroid problem because they're usually diabetes specialists with next to no knowledge of thyroid. Which is why we have to learn as much as we can and advocate for ourselves. Refuse to reduce the dose. Remind them that they are there to advise, not to dictate. There's no law says you have to follow their advice.

[SlowDragon Administrator in reply to AquaAuraAmethyst]

endocrinologist thinks the TSH is the main thing to keep at "normal" levels.

Then most likely endocrinologist is diabetic specialist

Many many people when adequately treated will have very low or suppressed TSH

Highly likely you have low vitamin levels after being left on PPI (omeprazole)

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

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

Iron Deficiency and PPI

medpagetoday.com/resource-c...

futurity.org/anemia-proton-...

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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

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

[PurpleNails Administrator]

Welcome to forum

The TSH (thyroid stimulating hormone) is a pituitary hormone which signals the thyroid to make hormone.

In healthy individuals when its “normal” or in range - it’s assumed so are the thyroid hormone (FT4 & FT3) normal.

When TSH is high it’s signalling that the hormone are too low and when its low doctors assume levels are “too high”. In the case of those taking replacement (levothyoxine) they reduce dose so the TSH looks in range.

The issue is the TSH can be unreliable, it might be either the FT4 or FT3 is low or the balance might off. If FT3 is low (hypothyroid) lowering your dose is worsening the problem. Although your doctor will say you are all good because your TSH is in range.

75mcg is a low dose and 1 step up from a standard 50mcg starter dose. A dosing guide is 1.6mcg per 1kg of body weight.

FT4 & FT3 are not always tested alongside TSH. Doctors often just go by TSH.

Doctors assume reflux is caused by high acid but you might have low stomach acid. The symptoms would be the same and the treatment would not resolve the issue. Absorption can become an issue.

High antibodies confirms diagnosis autoimmune thyroiditis. Many doctors are not interested in the cause, as all hypothyroidism is treated the same. Often they never refer to Hashimoto’s or autoimmune thyroiditis and will simply say low or hypothyroid.

[AquaAuraAmethyst in reply to PurpleNails]

Interesting stuff. The hiatus hernia was confirmed by endoscopy (there's a picture of it on my medical records!) and I was being treated for that for years before I was treated for thyroid issues. The alternative is surgery which is a major undertaking apparently.