Thyroid levels fluctuating

[Alma1]

Hi everyone,My TSH has gone up to 14.2 in a couple of months and T4 is 14. It was 2 before.Before that I was 0.11.So they reduced thyroxine now I am hypo.Had CV19 a year ago.Is this new hypothyroid level due to a cytokine storm which occurs with thyroiditis I believe and with COVID in some cases.

[SeasideSusie Remembering]

Alma1

You had a TSH of 0. 11 and your Levo was reduced. What dose were you on and what was it reduced to?

Following the reduction your TSH is now 14.2

Obviously the reduction in dose of Levo has had an effect. Your TSH has risen, your FT4 has undoubtedly lowered. What is your new FT4 level, please include reference ranges when quoting results as these vary from lab to lab.

Do you always do your tests under the same conditions ie blood test no later than 9am, nothing to eat or drink before the test except water and last dose of Levo 24 hours before the test?

To complicate things, you have Hashi's so this may be causing problems as test results and symptoms with Hashi's activity.

[Alma1 in reply to SeasideSusie]

Hi SeasideSusie,from memory I was on 175 then 150 then 125 then 100 and they said even that was too high at the time but let me stay on it.I can’t see my results online anymore for ranges as I changed GP but this has happened over the last year or so.My blood test is for 4 o’clock is that too late.

[SeasideSusie Remembering in reply to Alma1]

Alma1

TSH is highest early morning and lowers throughout the day. If we are looking for an increase in dose or want to avoid a reduction in dose then we need the highest possible TSH so we always advise testing no later than 9am.

We advise taking the last dose of Levo 24 hours before the test to reflect our normal circulating amount of FT4, taking it before the test will give a false high FT4 as it reflects the dose just taken.

Ideally TSH, FT4 and FT3 will be tested. TSH is not a thyroid hormone, it's a pituitary hormone, it's the FT4 and FT3 which are the thyroid hormones and show our thyroid status, particularly the FT3 result. Unfortunately a lot of doctors only test TSH and base dose adjustments on that alone which is wrong and why so many of us are still unwell.

If your full results and ranges aren't available online, ask the receptionist for a printed copy, we are legally entitled to our test results without charge or question.

[SlowDragon Administrator in reply to Alma1]

Rebook blood test for as near 9am as possible

TSH of 2 was likely too high

Just testing TSH is completely inadequate

You need TSH, Ft4 and Ft3 plus vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results

[SlowDragon Administrator]

Contact GP you need dose levothyroxine increased by 25mcg and bloods should be retested in 6-8 weeks time

How much was dose reduced and how long ago

Important to get vitamin D, folate, ferritin and B12 levels tested as you are now hypothyroid

What vitamin supplements are you currently taking

[Alma1 in reply to SlowDragon]

Hi Slow Dragon,Dr is retesting in a week as she is so surprised by the drop in the timeframe.She prescribed 25mg more Levo but I guess this may skew the baseline?I take vit d spray,and fish oil.They said my iron is ok.Think my B12 was 450 last time tested.Within range.GP due to start showing summary records soon but not now.Levo reduced in stages from memory from 175 to 100, in 25mg reductions.

[SlowDragon Administrator in reply to Alma1]

Optimal vitamin levels

Vitamin D at least over 80nmol and around 100nmol maybe better

B12 at least over 500

Folate and ferritin half way through range

[Alma1 in reply to SlowDragon]

Thank you Slow Dragon.I don’t have access to the ranges or latest figures of all tests.Asked for B12 test don’t know if they did it.Self testing seems the way forward or soon hopefully they will show records online.The GP said they will.

[SlowDragon Administrator in reply to Alma1]

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies or if under medicated

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

[Alma1 in reply to SlowDragon]

Thank you so much Slow Dragon I asked for these tests except for antibody one last year and they asked why I was asking,they didn't discuss them all on the phone so may not have done them all.I had an antibody test in 2017 and it showed Hashimotos antibodies.My new GP do seem good but do not have records up yet and I asked for results to read in writing and by phone.The reason I saw the last TSH and T4 one was because the hosp tested my blood re:kidney function and put it in a letter. Will look at having private tests to inform myself.Thank you so much.

[SlowDragon Administrator in reply to Alma1]

Kidney function can be significantly impacted by being hypothyroid, as you currently are

Very likely didn’t need any reduction in dose levothyroxine

[Alma1 in reply to SlowDragon]

Yes SlowDragon I only recently found this out. The GP was adamant as I kept being below range for a few months,even when they reduced doses.I thought I would go hypo again and have.

[Jan_Noack]

yeah, mine bounce around when my body is having "inflammation". I used to have high TPO and TG antibodies 15-20 year ago). In 2015 before I finally got my ESR and CRP measured and got diagnosed with PMR (another inflammatory probably autoimmune thing but more for over 40 ..but they usually say over 70's), well in 2015 my heart started thumping and racing ..like 220 and heavy thumps and wouldn't calm down day or night. It was regular and no atrial fib. I just stopped my thyroid meds for a few days.. and then by the time I got into the docs I said I needed my TSH measured as I figured I'd made myself hypothyroid. My THS was 100 with low FT4and Low FT3. I went back onto my usual 90mcg T4 equiv.(I was taking pig's natural thyroid and some extra T4). I got it remeasured..it was 0.2 , then TSH 28, ten 0.03 , ..it kept oscillating in ever reducingswings until it stabilized. Since being on steroids (prednisone/prednisolone) it has finally calmed done and feel as normal as I can expect..and I no longer need that T3..just T4.

So , the story above is to give background to my suggestion of getting ESR and CRP measured for inflammatory markers as well as the usual antiTP, antTG, and full panel of TSH, FT4 and FT3. Check your liver enzymes as well..my have been inexplicably elevated for ten years now... Good to rule out stuff that's all.

other than being diagnosed with hashimotos and later PMR and having some brain damage where my blood doesn't flow (and i"m unsure if that is related) I have no idea what is going on. I'm going to a specialist for HE(SREAT) to see if I have had that..but definitely rule out antibodies as much as you can and inflammation.

[Alma1 in reply to Jan_Noack]

Hi Jan N,I had inflammation in 2017 the last time. I think Dr tested or told me it was raised, anyway.I had a cold so they put it down to that.Well I am hoping for further input despite C Virus making healthcare pressures more difficult.Kidney function dropped down too.Now going up.I will note your suggestions thank you.Also wondered if possible cytokine storm that may occur with C19 affects the thyroid.I know they dr's don't know that much about this area as of yet though.

[Jan_Noack in reply to Alma1]

COVID may affect inflammation and that may affect the thyroid, liver, brain, kidneys,heart etc.

My kidney levels drop and go up too. the range between 45 and 70. Lower after scans with iodine. I haven't figured me out as yet. My inflammation levels were high back in 1980's too..but doc just put it down to having a virus or something., He found aI had had Epstein Barr virus in the past as I had antibodies ...

Keep a check and push hard for some explanation and treatment if they keep oscillating. It's easier these days and in the US, though it's still OK in Europe and UK. I'm in Australia).

It's not always just the dose need changing..though, of course, it could be. It is surprising how small a change can affect levels in me. like 90mch compared to 100mcg ..90 I may have a TSH in twenties and 100mcg less than 1

[Alma1 in reply to Jan_Noack]

Hi Jan N.Yes and I have asked what is up with the kidneys, a drop in function of 10 and for the Thyroid a rise in TSH of 12 making it hypo, all in recent months.

[tattybogle]

Someone made an excellent analogy on here the other day , " adjusting thyroid hormone doses is like steering an oil tanker"

In my opinion your results show yet another example of Dr's making too large reductions , in too close succession, when they don't see the TSH respond as much as they wanted from the reduction. And ending up with massive 'over steer'.

At 0.11 you may or may not have needed a reduction , depending on how you felt and whether fT4 was over range, however they reduced by 25mcg, (for me, 12.5 was enough to raise TSH slightly)

When the TSH was at 2, that was a sign that the reduction was effective, and TSH was rising.

And also, 2 is a pretty optimal result, if not already slightly too high , see this graph of healthy TSH levels without thyroxine; (quite often people on thyroxine only feel well when its under 1 )

healthunlocked.com/thyroidu...

At this point they should have left dose alone and waited several months to see the next result before reducing further.

But they kept reducing all the way down to 100mcg nearly halving your dose, quite probably because some of them seem to have the idea in their heads that the correct dose for everyone is about 100mcg and anyone taking much more should be reduced... and they love an excuse to do so.

Any reduction that happened after TSH was 2 should be questioned closely, taking fT4 and ft3 into account.

....anyway end result eventually is TSH 14, which is not surprising.

Dose needs increasing now, TSH(Thyroid Stimulating Hormone) of 14 is way too high.

Looking at your TSH level, your fT4 of 14 is probably low in range, most common UK lab ranges are in region of [12-22], BUT there is one of [7.9-14], so you can see why we need the range to be sure whether it's high or low in range.

Regarding the cytokine storm, i think , but am not certain , that cytokine storm is such a serious issue that you would know if you'd had it happen, as it is what gives them all the problems with organ failure etc and put 's you in intensive care ward.

It is possible that covid may have messed with your thyroid levels, there are some reports coming out, of an effect similar to NTI, (non thyroidal illness syndrome) where results are temporarily deranged during the acute and recovery phase of very serious illness/injury.

There have been a couple of recent studies posted on here on the subject. Perhaps put covid into the search box, or look under posts from member name diogenes .

[Alma1 in reply to tattybogle]

Thanks Tattybogle.I heard that the thyroid can get autoimmune activity called cytokine storms that impacts its function.This is solely related to thyroid issues not associated with CV19 where cytokine storms related to that have been reported too.My TSH rose after the last decision to leave me on 100mg at a TSH of 2.I was told sternly to reduce when I had a reading of 0.11! They only seem to like in range or the direction toward hypo levels not a hint of hyper.T4 is 14 with top number of 20 range,from memory.Am being advised re: kidney level. Changed my blood appt to test thyroid level from 4pm to 9am thanks to advice on here 👍

[Freewoman1997]

Thanks fo info tattybogle I am having same as OP. Covid and now TSH of 20 and F4 of 4. Cant get out of bed thought it was long covid. Take 60mcgs of T3 daily.Been on this treatment for over a decade no probs at all. TSH is usually 0.2 only then do I feel well with no symptom. No hyper symptoms either just function well. Getting desperate too. Hope you get it sorted OP.