Help with results please - TSH 8.6 (0.1-5), T4 20 (12-23). Feeling overactive.

[Sunshine388]

Hi, please could I have some advice with my husbands recent blood results.

History: 40 year old male, hashimotos led to underactive thyroid about 15 years ago. Covid 2 years ago seems to of played havoc with his thyroid (??re-triggered some autoimmune response is our thoughts). Possible long covid/fatigue/underactive thyroid symptoms intermittently over last 2 years. Lots of small tweaks to levothyroxine dose. Vitamin supplements taken. Advice taken on here of getting same brand of levothyroxine and trying to get blood test first thing in morning. Last 6 months have seen general improvement.

He's currently feeling tired but on edge, struggling to relax, indecisive, inpatient and poor tolerance of noise etc. Levothyroxine dose not changed but we both felt he had gone hyperactive on current dose. His hypo and hyper symptoms are very similar and difficult to differentiate unfortunately.

29/07/22 - TSH: 8.61 (range 0.1 - 5.0), T4: 20 (range 12-23) on levothyroxine 125mcg 4x a week, 150 3x a week.

Unfortunately these bloods weren't done first thing in the morning and GP didn't request T3. Vitamin levels not checked this time either. Previously Vitamin D levels have been low, but Iron and B12 are always at good levels. T3 is generally at decent point within range so doesn't seem that he is poor converter, as looked at this previously.

Previous results on same dose were 11/11/21 - TSH: 0.38 (0.1-5), T4: 29 (12-23). Although T4 out of range, after lots of tweaks to levothyroxine, this was level he felt most 'well' on.

Our concern is 2 years ago he had similar 'unusual' results 29/06/20 - TSH: 4.5 (0.1-5), T4 26 (12-23), T3 5.0 (3.5-6.5). He also felt hyperactive at this time and following discussion with GP that results of both high TSH and high T4 were strange, they reduced levo dose based on symptoms. We found out the hard way that this was not right thing to do and he became very hypo.

GP appointment booked for later this week. We plan to ask for vitamin levels checking especially Vitamin D. Also want to ask for T3 test but the labs may not process this as won't repeat thyroid bloods within 6 weeks of previous tests.

Any advice on what we should do or speak to GP about is much appreciated. We are reluctant for him to increase dose as anything above this has always led to hyperactive symptoms.

Could this be a hashimoto flare? (My understanding of hashimoto flares is limited).

Any ideas why he has high TSH with T4 on higher end of scale also ? And how can blood results be so varied on same dose as 8 months previous?

Thank you in advance to anyone who has got this far and for any replies!

[Jaydee1507 Administrator]

It's possible it's a Hashi's flare but I am wondering how and when he takes his levo? Is it always on an empty stomach away from coffee? Ideally should be same time of day, every day, religiously. Is he taking other meds at the same time that could affect absorption etc?

I've personally had weird results myself including recently and some times I can account for it and others not. I've also felt hyper when I'm actually hypo which is very confusing indeed!

[Sunshine388 in reply to Jaydee1507]

Thanks for your reply - Always takes levo on an empty stomach when he first wakes with just water. Doesn't eat/drink for 30 mins. He admits maybe he could leave it longer but feels as it's consistently this it shouldn't effect strange absorption. Weird results and similarities between hyper and hypo definitely make it difficult!

[Jaydee1507 Administrator in reply to Sunshine388]

I've just had a weird result on same dose I've been on for years. Was feeling a bit hypo but blood results showed (according to NHS with no FT3 taken into concideration) I am hyper. GP wanted to reduce my dose by 50 mcgs but I negotiated 15mcgs.

I think if these things happen only make a tiny adjustment then you're not too far off it was just a weird result.

[Sunshine388 in reply to Jaydee1507]

This is very similar to him 2 years ago, ended up making a 50mcg change in the wrong direction on GP's advice. He ended up pretty unwell. That's what made me start trying to learn more about hypothyroidism/hashimotos so I can try and help at doctors appointments. Such a shame it feels like we need to know/fight about how to treat this ourselves!!

[Jaydee1507 Administrator in reply to Sunshine388]

Quite! I'm now 58 and totally over NHS thyroid 'treatment' which for many unfortunate people is worse than a sticky plaster. If you can possibly afford it then I would encourage you to seek help outside the NHS and get some T3 added. Some people do self treat but you need some confidence and good guidance to do that.

I really hope you can improve his condition soon.

[SlowDragon Administrator]

He has Hashimoto’s

TSH should be kept as low as possible to stop variations in levels

Likely to need addition of T3 to stop his own thyroid cutting in and out

Has he had coeliac blood test done

Is he on strictly gluten free diet

If not, that’s ALWAYS worth trying

Have you considered dairy intolerance

Which brand of levothyroxine is he currently taking

How much levothyroxine is he taking

Always on empty stomach and then nothing apart from water for at least an hour after

No other medications or supplements within 2 hours

Magnesium, vitamin D, iron at least 4 hours away from levothyroxine

Has he had testosterone levels tested

Or cholesterol

High cholesterol would confirm if he’s under medicated for thyroid

Similarly low testosterone, would suggest thyroid inadequately treated

ESSENTIAL to test vitamin D twice year

Folate, ferritin and B12 once a year

Obviously need TSH, Ft4 and Ft3 tested together, test early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

[Sunshine388 in reply to SlowDragon]

Thanks for the reply. We'd looked into T3 before but were under the impression only needed if poor converter, which fortunately he doesn't seem to be. Hospital endo refused T3 and now discharged so would have to be private and don't really know where to start or how to get it prescribed?! And can it make it even harder to find right dose?!

Food intolerances - he doesn't have any gastro symptoms so doesn't feel like its diet related. He's reluctant to go gluten free as hypothyroidism was generally better controlled until 2 years ago, so if gluten in diet affected it then would always of been this way. I've suggested it again to him.

Takes levo first thing when wakes with just water, no other supplements with it. Eats at least 30 mins later - we maybe need to make this longer time frame as also mentioned by post above.

Always takes mecury pharma brand for last 12 motnhs.

Hasn't had cholesterol or testosterone checked. Would these just be to help indicate if under medicated in general? Will discuss this with GP at appointment.

Had been getting tests first thing and 24hrs after last dose (probably on your advice previously!), but he forgot this time as hadn't had one for a while!

[greygoose in reply to Sunshine388]

How long was the gap between his last dose of levo and the blood draw?

What were the labs that lead you to conclude that he's not a poor converter? Because if that TSH is correct, then I think he must be.

[Sunshine388 in reply to greygoose]

Levo was taken about 5 hours before this one as he forgot he needed bloods first thing. I guess that could be why T4 is higher? He always seems to have T4 at higher end though.

We used a formula from someone on here to check conversion (maybe even yourself!)

January 2022 bloods - TSH: 3.32 (0.1-5), T4: 21 (12-23), T3: 5.8 (3.5-6.5)

November 2020 bloods - TSH: 0.96 (0.1-5), T4: 25 (12-23), T3: 6.1 (3.5-6.5)

We checked as wondered if T3 was worth trying, but decided if not a poor converter then it might just complicate things even more!?

[greygoose in reply to Sunshine388]

That loosk like poor conversion to me. Especially the November 2020 results. Not the worst I've ever seen, but I think a little T3 added to a reduced dose of levo might be beneficial. Then he wouldn't have to have the FT4 so high, which might make him feel better.

You didn't get the formula from me. I don't believe in formulas.

[SlowDragon Administrator in reply to Sunshine388]

Very common for conversion to get worse the longer you are on levothyroxine

Suggest you get FULL thyroid and vitamin testing done privately

Test early Monday or Tuesday morning and last dose levothyroxine 24 hours before test

Come back with new post once you get results

Just testing TSH and Ft4 is completely inadequate

That’s a false high Ft4 result too if took levothyroxine before test

On levothyroxine TSH must be below 2 maximum

[SlowDragon Administrator in reply to Sunshine388]

Leaky gut and gluten, is not like typical coeliac disease

It’s always worth trying strictly gluten free diet. Yes it’s daunting initially, but thousands of members find it so much better, they would never consider eating gluten again

[SlowDragon Administrator]

Exactly what vitamin supplements is he taking

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after….

If only waiting 30mins before eating……Does he always have exactly same breakfast at exactly same time after taking levothyroxine….if yes, then just taking higher dose levothyroxine

If it varies,then better to either wait longer or try taking at bedtime (nothing apart from water for at least an hour before levothyroxine)

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If 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

[Sunshine388 in reply to SlowDragon]

Thanks for all this SlowDragon.

Ferritin was done in November and was 148 (20-250). Other vitamins havn't been done for nearly 2 years so we are hopeful might be able to get GP to request these. Then will have to do full thyroid screen privately.

He doesn't actually take any supplements so this can't have interfered with results. (2 years ago vitamin levels frequently mentioned on here were good B12: 682 (200-900), folate: 11.3 (3-12)) Just vitamin D that has ever been an issue.

Useful to know conversion can get worse with age. He's been on levothryoxine since he was 25 so this is something we'll need to consider going forward. We'll look into trying gluten free diet and see what he decides.

He does generally have exactly same breakfast, so this should help with consistency following taking levo. Think trying to wait a bit longer might help though. He tried taking it at night for about 6 months but felt what he ate before bed was more likely to cause inconsistencies with it and didn't see any improvements so now takes it first thing again.

[SlowDragon Administrator in reply to Sunshine388]

Personally I set alarm for early morning on my watch for 6am….take levothyroxine (and T3) and go back to sleep

Breakfast 2 hours later

[Beads]

Just checking, he doesn’t take his levo before his blood test does he? If he’s under medicated his TSH will be high, if he then takes his levo an hour or two before the blood draw then that will be circulating higher in his blood as well.

[Sunshine388 in reply to Beads]

It was actually about 5 hours before so guess this will have affected the T4 to be falsely high from what other people have said? He's remembered to get it done first thing in morning next time again! (He never used to until we came on here and it was suggested about 12 months ago)

To me the high TSH means he's under medicated but he's convinced he's over. I think whatever he decides with GP, we'll make sure it's only a small medication change in case it's changed in wrong direction or it's dodgy blood results!

[SlowDragon Administrator in reply to Sunshine388]

Being very hypothyroid often “feels hyper” ….because running on adrenaline instead of thyroid hormones