Fluctuating results - advice please for a new member

[Kerrie1442]

Hi everyone, just joined. I feel a bit stuck. Over the past few months I have been getting fluctuating results for my thyroid?

I was diagnosed hypothyroid in 2013. TSH went from 0.68 to 2.2 and then 5.2 to 0.83??

November 2017 (150mcg levothyroxine)

! TSH 5.64 (0.2 - 4.2)

FT4 13.8 (12 - 22)

FT3 4.1 (3.1 - 6.8)

September 2017 (150mcg levothyroxine)

! TSH 0.02 (0.2 - 4.2)

! FT4 26.1 (12 - 22)

FT3 4.2 (3.1 - 6.8)

My GP wants me to reduce to 100mcg, I don't know if I should because I was on 100mcg before in November 2013 and my TSH was 4.5 (0.2 - 4.2)

Symptoms are puffy eyes, fatigue, difficult swallowing, loss of concentration, dry skin, joint aches and pains, gaining weight, swollen thyroid, weak and low pulse, feel like an anomaly!!

Thanks for any information.

[SeasideSusie Remembering]

Kerrie

What are your current results that make your GP say he wants you to reduce your dose? Your November results aren't appropriate now.

Do you always have your thyroid tests done first appointment of the morning, after an overnight fast (water allowed) and leaving off Levo for 24 hours? That way you can compare results accurately, if conditions aren't the same every time then you can't compare the results.

Have you had thyroid antibodies tested?

[Kerrie1442 in reply to SeasideSusie]

September 2017 (150mcg levothyroxine)

! TSH 0.02 (0.2 - 4.2)

! FT4 26.1 (12 - 22)

FT3 4.2 (3.1 - 6.8)

Thank you, yes thyroid bloods done before 9am, leaving off levothyroxine for 24 hours and fasting overnight.

[Kerrie1442 in reply to SeasideSusie]

! Thyroid peroxidase antibodies 278 (<34)

! Thyroglobulin antibodies 305.3 (<115)

[Kerrie1442 in reply to SeasideSusie]

I did not agree to the dose reduction.

[greygoose]

In November, did you you take your levo before your test? Have you had your antibodies tested?

You are not over-medicated, because your FT3 is not even mid-range! Your doctor is being ignorant and just looking at the TSH. So, you actually need an increase in dose. I don't think you have a conversion problem, because it would have shown up in September, too, if you had. I think you just forgot and took your levo before the test.

[Kerrie1442 in reply to greygoose]

Thank you, no I didn't take my levothyroxine before the test.

[Kerrie1442 in reply to greygoose]

Conversion problem has been flagged up with me on 175mcg levothyroxine:

TSH 1.20 (0.2 - 4.2)

FT4 19.3 (12 - 22)

FT3 4.0 (3.1 - 6.8)

[greygoose in reply to Kerrie1442]

And yet, in September, your FT4 was low...

Do you take any biotin?

[Kerrie1442 in reply to greygoose]

Thank you, no

[silverfox7 in reply to Kerrie1442]

You may be taking it without realising. It's in Vit B complex and also in some shampoos.

This forum is run by Thyroid Uk so look on there site as lots of do's and don't so you may, through not fault of your own, be doing something that's not recommended so well worth checking that out as well.

Also dose changes are best done by 25 mcg not 50 and you may need a pill cutter to do that but they are only a few pounds. I bought a Pill mate after a recommendation as it's the best of the ones tried.

[Kerrie1442 in reply to greygoose]

! Thyroid peroxidase antibodies 278 (<34)

! Thyroglobulin antibodies 305.3 (<115)

[Kerrie1442 in reply to greygoose]

I have gotten my dates mixed up, my current ones are the first ones I posted. My current ones are November 2017

[greygoose in reply to Kerrie1442]

OK, so the very high FT4 was in September. So, you didn't take your levo before the test in September, either? Still doesn't make any sense.

Why on earth does your doctor want to reduce your levo now? You haven't had a test since November last year, and your TSH was 5.14! Is the man mad?

[Kerrie1442 in reply to greygoose]

Thank you, no I didn't take any levothyroxine before the test in September either. I think I may have gotten the FT3 result wrong. He wanted to reduce back in September when my TSH was 0.02 and my FT4 26.1. I had thyroid repeated last week, I don't know what my numbers are.

[Kerrie1442]

I also have endometriosis (only option is surgery which the GP doesn't want to subject me to), iron deficiency, vitamin D deficiency, folate deficiency and pernicious anaemia

[Kerrie1442]

Maybe I need T3?

[greygoose in reply to Kerrie1442]

Maybe you do, but there's something wrong with that November FT4. It can't suddenly have gone up like that from September, on the same dose of levo. And, if it were the Hashi's - which you have, by the way, did you know? - the FT3 would have shot up, too. Are your tests always done in the same lab?

[Kerrie1442 in reply to greygoose]

I got my dates round the wrong way, sorry.

Yes, my tests are always done by the same lab.

[Kerrie1442 in reply to greygoose]

I don't think the FT3 result is right either, I think it was higher.

[greygoose in reply to Kerrie1442]

Hmmm... There's definitely something queer going on.

Could you possibly get your labs done privately, for a second opinion, like? See if we get any sense out of them?

[Kerrie1442 in reply to greygoose]

I don't have the money to afford private testing, I did do private testing before and during possible Hashi flares my FT3 did shoot up as did the FT4. I can post those if need be? My dose adjustments were more frequent back then.

[greygoose in reply to Kerrie1442]

No, no need to post them. I believe you. That's the way it should be in a Hashi's flare, both Frees rise. But, it was just your FT4 in September... Unless it's the November test that's wrong, where the FT4 is low.

You didn't say if you took - or have even taken - biotin.

[Kerrie1442 in reply to greygoose]

No I don't take and never have taken biotin.

[greygoose in reply to Kerrie1442]

OK, so that's one theory out! We need to see those latest results. No point in discussing history.

[SeasideSusie Remembering]

Kerrie

Are you saying that your GP has said now, in May, that he wants to reduce your dose based on tests done in November?

Your high antibodies confirm autoimmune thyroid disease aka Hashimoto's which is where the antibodies attack the thyroid and gradually destroy it. Hashi's causes fluctuations in test results and symptoms, that's the answer to why your results are so different on the same dose of Levo.

You can help reduce the antibodies by adopting a strict gluten free diet and supplementing with selenium l-selenomethionine 200mcg daily.

[Kerrie1442 in reply to SeasideSusie]

Thank you, sorry, my dates were mixed up. My seemingly overmedicated results were done in September. My current ones were done in November. My thyroid was rechecked last week but I don't know what the results are. I didn't know if the GP was right in wanting to reduce my dose based on September's readings but since they came back undermedicated again in November on the same dose it confused the GP.

[greygoose in reply to Kerrie1442]

Not difficult to confuse a GP! lol But, still not a reason to reduce your dose! Can you get hold of these latest results?

[Kerrie1442 in reply to greygoose]

I can't get hold of them until my appointment in 2 weeks

[greygoose in reply to Kerrie1442]

Well, when you have your appointment, refuse to agree to anything until you've seen your results - ask for a print-out. And, only if your FT3 is over-range, should you agree to a reduction in dose.

[SeasideSusie Remembering in reply to Kerrie1442]

Kerrie

Yes you can. As long as a doctor has seen them then you can ask for a print out from reception.

[SeasideSusie Remembering in reply to Kerrie1442]

Kerrie

You should wait for your new results. No point in asking now whether your dose should have been changed six months ago, it's no longer appropriate. Come back with your new results and tell us what your GP proposes now.

[greygoose in reply to SeasideSusie]

Except that if it were the Hashi's, then the FT3 would shoot up, as well as the FT4.

[Kerrie1442 in reply to greygoose]

The FT3 result is 5.6 (3.1 - 6.8)

[greygoose in reply to Kerrie1442]

Yes, but if it were a Hashi's flare, the FT3 would be over-range. That's only just over mid-range.

[Paula101]

Hi Kerrie & welcome 👋

We'll it's good to see your TSH has come right down, people tend to feel better when it's closer to zero.

Your FT4 is over range & I'm not too sure if that has a negative effect, someone far more knowledgeable will come along & explain. In any case FT4 should be at top end of range.

Your FT3 has hardly moved & that really needs to at least half way through its range. If I remember correctly, it means you might not be converting T4 to T3. Please someone shoot me down if I'm wrong 🙂

T3 is the active hormone & we need it in all our cells, it provides vital energy. This will go some way to explain why your symptoms are not improving.

No don't let your Dr reduce your Levo, it's keeping your TSH down & that's where it should stay. People increase their dose until symptoms go. You need to be re-tested every 6-8 weeks to check levels & before any increases are made, as it takes that long for Levo to get a chance to work.

Have you had tests for vitamins & minerals? These are essential because deficiencies can play merry hell with your body & cause all sorts of symptoms.

Have you had antibodies tested?

If you are high in these then this indicates Hashimoto's (commonly known as auto immune thyroid disease) for this you'll need to look at going Gluten Free as leaky gut is common with Hashimoto's. With holes in the gut no amount of medication, Vits or mins can be optimally absorbed.

I hope this has been of some help & you'll get more replies with more vital advice 🙂