Thyroid ultrasound was fine. Does that definitely rule out Hashimotos?

[Charltonjl]

I hope you can help. My blood test result from 2 weeks ago showed high thyroglobulin antibodies and the doctor said this suggests Hashimotos (other results were 'in range'). I had a private ultrasound yesterday and the sonographer said my thyroid looked absolutely fine. I've been feeling awul for a year now and am currently on 50mg levo and 12.5 T3 (I increased the amount of meds since I posted on here last week and got some good advice about my test results and being undermedicated). I have a bad gut which has got worse recently, exhaustion, muscle aches (especially my ankles), hair loss, heavy periods, acne etc. Any advice appreciated. Thank you xx

[Lora7again]

Can you add your blood results including ranges?

[Charltonjl in reply to Lora7again]

Hello, thank you for your response I've added the antibody results above and here are my thyroid results. I hope you can view them? I find it hard to navigate on my phone. Thanks again xx

Thyroid results

[Lora7again in reply to Charltonjl]

You definitely need an increase in dose because your TSH should be 1 or lower especially as you are taking T3. Just being in range doesn't mean it is the right level for you.

[Charltonjl in reply to Lora7again]

Thank you. I've increased from 25mg of levo to 50mg and 6.25mg of T3 to 12.5mg. Do you think that's enough as a start? X

[SlowDragon Administrator in reply to Charltonjl]

Was this test result before increasing to 50mcg levothyroxine

Taking T3 is likely to significantly lower TSH and then you can struggle to get GP to increase levothyroxine dose

50mcg levothyroxine is standard starter dose

Typically dose is increased slowly upwards in 25mcg steps

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 eventually 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...

[Charltonjl in reply to SlowDragon]

Thanks again SlowDragon! I increased to 50mg of levo (from 25mg) after my blood test results 2 weeks ago and also increased my T3 by 6.25mg. On the basis of the above, I should be on 100mg of levo but both my doc and endo think my results are perfect and won't increase my levo. That's why I started taking T3 in December. They don't care that I feel awful all the time x

[Lora7again in reply to Charltonjl]

Look at SlowDragon reply to you

[fuchsia-pink]

No, these are different things.

Your high antibodies just show that the cause of your hypothyroidism is Hashis (which is the biggest single cause) - the scan is looking for nodules etc.

Hashi's doesn't go away - your antibody levels will go up and down as they see fit - if they drop it doesn't mean you are "getting better" - it's just what they do sometimes, so there's no need to test them again. But great that your scan showed no other issues x

ps gut issues very common with Hashi's - lots of people find it helpful to go gluten-free even if not coeliac and others try dairy-free too. Hair loss and heavy periods mean it's very important to check ferritin regularly - and supplement as nec - and low B12 can also give hair loss problems. Muscle aches usually mean I'm under-medicated, so good you are increasing slowly and sensibly

[Charltonjl in reply to fuchsia-pink]

Thanks so much, this is a great help. In my previous post I replied to Slow Dragon with all my other results and I think they're ok. Can I still have Hashimotos with high thyroglobulin but normal TPO? I'm just very confused as no one had ever suggested I had Hashimotos before. I have also ordered a coeliac test to rule that our before going gluten free 🤞🏽. Thanks again xx

[greygoose in reply to Charltonjl]

This is a tricky subject. High Tg antibodies can be caused by many things, But, if they're caused by Hashi's, they're usually much higher than yours. Mine were in their thousands. So, your result is not definitive. As fuchsia-pink says, they do fluctuate - and some Hashi's people never even have high antibodies of either kind. So, absence of antibodies doesn't mean you don't have it.

On the other hand, damage done by Hashi's will show up on an ultrasound if it's bad enough - that's how we know that not all Hashi's people have high antibodies. So, either your Hashi's is in its very early stages, or you don't have it. Only time will tell.

[Charltonjl in reply to greygoose]

Thanks Greygoose. Is it worth repeating the blood test in a few months? If I have it would the antibodies increase over time? Or is there a chance the antibodies won't show on the next bloods? I'm a little confused. I've had certain symptoms flare up recently (gut issues and ankle pains) and wondered if it could be early Hashimotos too? Thank you x

[greygoose in reply to Charltonjl]

Antibodies are totally unpredictable, so there's no way of know if they will increase or decrease, or stay as they are.

The symptoms you're experiencing are hypo symptoms, and you can be hypo without having Hashi's. You probably just need an increase in dose. Your TSH is much too high and your FT3 much too low. There aren't really any specific symptoms related to Hashi's.

[Charltonjl in reply to greygoose]

Thanks again :). How do I go about getting an increase of levo though? I'm fighting a losing battle with my GP. No matter what or how bad my symptoms are she won't increase my levo because I'm 'in range'

[greygoose in reply to Charltonjl]

I wish I had the answer to that question, but I don't know how you educate ignorant. It's a universal problem. That's why so many of us self-treat.

[Charltonjl in reply to greygoose]

It really is unfortunate x

[greygoose in reply to Charltonjl]

It certainly is.

[shaws Administrator in reply to Charltonjl]

Doctors don't seem to bother about antibodies, especially high ones if the person is having a problem with their thyroid gland.

Doctors don't seem to have much training in a dysfunctional thyroid gland, neither do they appear to be aware that there are three problems, i.e. hypothyroidism or hashimoto's disease or hyperthyroidism.

Going gluten-free can help reduce antibodies.

I have read it is the cause of many people's hypothyroidism and it is called Hashimoto's.

thyroiduk.org/?s=hashimotos

[Charltonjl in reply to shaws]

Thank you so much I shall have a read. I know my results aren't great but I almost want them to drop outside range so my meds can be increased. My GP like so many don't care about how awful we feel or how much pain we're in and that's very unfortunate. Basically just give and Levo and tell us to get on with it x

[OudMood]

Well…I am not suggesting nothing here..

But let’s say I was in your shoes and knew I needed more Levo, as when medicated that TSH should be almost suppressed..

I would re-do the blood test but stop taking my Levo for a few days before the test.

Yes, I’d feel crap, but most likely the TSH would feel uncomfortable enough for the docs to increase Levo dose.

Again, not saying that’s what you should do, but it is something I would consider.

Another I would consider is maybe ordering the private tests with the finger prick and doing the test around 1-1.30am as TSH highest between 12am-3am. That would likely produce a slightly more elevated blood test too.

[Charltonjl in reply to OudMood]

These are great suggestions. Very clever, thank you :)x