Results going up and down why?: Hi everyone... - Thyroid UK

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Results going up and down why?

beckysaunders profile image
16 Replies

Hi everyone diagnosed hypothyroid 2012. Any idea why my results would do this please?

AUG 2017 (150MCG LEVO)

TSH 5.6 (0.2 - 4.2)

FT4 25.5 (12 - 22)

FT3 5.2 (3.1 - 6.8)

NOV 2017 (150MCG LEVO)

TSH 1.30 (0.2 - 4.2)

FT4 19.2 (12 - 22)

FT3 4.1 (3.1 - 6.8)

JAN 2018 (150MCG LEVO)

TSH 5.6 (0.2 - 4.2)

FT4 13.9 (12 - 22)

FT3 3.6 (3.1 - 6.8)

I still have hypothyroid symptoms. Thank you

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beckysaunders
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SeasideSusie profile image
SeasideSusieRemembering

Beckysaunders

Have you had thyroid antibodies tested?

beckysaunders profile image
beckysaunders in reply to SeasideSusie

TPO ANTIBODIES 408.5 (<34)

TG ANTIBODIES 275 (<115)

SeasideSusie profile image
SeasideSusieRemembering in reply to beckysaunders

Becky

As Jazz says, raised antibodies confirm autoimmune thyroid disease aka Hashimoto's which explains the fluctuations in your results.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It would be a good idea to test

Vit D

B12

Folate

Ferritin

Jazzw profile image
Jazzw

It seems very likely you have autoimmune thyroiditis - or Hashimoto’s, as we often call it here. Surprisingly, many doctors (and even endos) don’t seem to understand that when one has Hashi’s, thyroid function can go up and down during the course of the disease. You can tell if you have Hashi’s if your antibody levels are higher than the reference range.

beckysaunders profile image
beckysaunders in reply to Jazzw

TPO ANTIBODIES 408.5 (<34)

TG ANTIBODIES 275 (<115)

Jazzw profile image
Jazzw in reply to beckysaunders

Ah, yes - you do have Hashimoto’s (autoimmune thyroiditis).

Your January blood tests indicate you were significantly under-replaced with thyroid hormone - did your doctor not contact you to raise your dose? Might be worth going to the doctor for a fresh set of bloods and if they still look like these (or worse) asking for a raise in levothyroxine.

beckysaunders profile image
beckysaunders in reply to Jazzw

Thank you, I was told no dose increase because my results weren't following a pattern.

TSH FT4 FT3 done last week, I haven't heard back about them but I am wondering if the doctor is waiting until my appointment next week to discuss them?

Jazzw profile image
Jazzw in reply to beckysaunders

Probably! I have a feeling you’ll be more under than over-medicated.

Doctors say some right old cobblers, don’t they? “No pattern” indeed. Hashimoto’s is ultimately a one way trip to hypothyroidism (with some adventures in running hyper on the way). I get that it can be tricky to treat during flares but why don’t doctors treat patients like partners in healthcare? I suspect you know your own symptoms well enough to figure out when to reduce dose and when to raise it and prescribing you another 25mcg to take (or not to take if you feel you don’t need it) shouldn’t be a tricky decision to make really...

But that’s far too radical an idea for most doctors, it seems.

Good luck for next week! Make sure you get all your results. :)

SilverAvocado profile image
SilverAvocado

I agree you should have a dose increase. Even with a lot of ups and downs your freeT3 has never gone over range, and your TSH has never got low.

With blood tests like these, that "dont show a pattern" as your doctor says, I think you should dose more on symptoms, anyway. You will probably always feel a bit rubbish while in a flare, but you want to aim to feel the best you can, for the largest amount of the time.

As others have said, going gluten free can help with antibodies. About 50% of Hashi sufferers find being dairy free helps, too. As you've got so much antibody activity it is worth considering going the whole way and doing the autoimmune protocol dietwhich is quite strict.

beckysaunders profile image
beckysaunders in reply to SilverAvocado

Thank you, I had previous results of TSH below range, FT4 FT3 over range. I was on Carbimazole for that

SilverAvocado profile image
SilverAvocado in reply to beckysaunders

Omg! Do you have graves antibodies, too?

People here are assuming these are Hashi's flares. This is when your thyroid is being attacked by antibodies, and this dumps extra hormone into your blood supply.

Usually this wouldn't be enough to take your tests results high, but as you're taking thyroid replacement as well, the two things added together could take your blood tests over range. Especially as a good dose of thyroid hormone will take you quite close to the top of the range anyway.

Carbimazole is usually given to people with Graves disease, and it slows down your thyroid. I don't know the exact mechanism, but it makes the thyroid make less hormone. It sounds like you may have been given it wrongly, as if you're on thyroid hormone you can reduce the amount of hormone by lowering the dose till it passes. Unless they reallyg thought at one time you had an over active thyroid?

Are you able to tell by symptoms when you're getting more hormone through? May be hard to tell over the period of these tests, because e you're going from quite undermedicated to slightly undermedicated.

There isn't much discussion on the forum of how to manage these flares, but I think the usual thing is to adjust your dose yourself. You want to be on a higher dose than you are now, and then get used to the feeling of being over medicated, and cut your dose back for however long it takes.

Gluten and dairy free, and/or autoimmune protocol could make a big difference, though. Otherwise you are just waiting for your thyroid to get destroyed for this up and down to stop. Only try one thing at a time, though, to figure out what makes the difference.

Jazzw profile image
Jazzw in reply to SilverAvocado

I expect carbimazole is actually quite often dished out to Hashi’s patients experiencing flares. Carbimazole works by preventing the conversion of iodine to its useable form - it stops it from being combined with other components to form thyroid hormones (T4/T3). Not necessarily a problem in the short term.

beckysaunders profile image
beckysaunders in reply to SilverAvocado

Thanks. I don't know if I have Graves antibodies or not, it was said I look the sort to have it. It's very hard to tell by symptoms if I am getting enough medication

SilverAvocado profile image
SilverAvocado in reply to beckysaunders

According to these blood tests you're going from having a freeT3 at the very bottom of the range, to sometimes around the middle of the range.

The freeT3 is the test that best predicts symptoms, as it measures T3, the active hormone.

Generally, to feel well we want it in the top third. Everyone is different, so this is just a rule of thumb.

This shows you're pretty undermedicated, so if anything you'd probably feel a bit better during a flare up.

If you were on a better dose you'd probably end up feeling overmedicated during the flare-ups, so it might be easier to notice what was happening.

SilverAvocado profile image
SilverAvocado in reply to beckysaunders

I think if doctors are implying you might have Graves you should demand a proper test, and conclusive diagnosis. Its possible to gave both Graves and Hashimoto's with both sets of antibodies.

I hate it when they just mutter and imply things. Its unfair behaviour. If they think you may have a certain condition, they should go to the work to make the full diagnosis!

beckysaunders profile image
beckysaunders in reply to SilverAvocado

I have checked online, TSI and TRAB negative

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