Thoughts on results please? Any ideas as to rea... - Thyroid UK

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Thoughts on results please? Any ideas as to reason?

rosie64 profile image
14 Replies

Thyroxine increased from 100mcg by tiny amount recently due to increased TSH. (25mg over 4 days - quartered tablets). Managed to tolerate for about 6 weeks but felt increasingly unwell, anxious, over medicated. Would appreciate your input before appointment with NP/GP: also on Ferous numerate as was previously low, and take 1-2 Adcal D3 daily.

Blood results from Randox;

23rd Oct prior to increase

TSH 8.09 - optimal 0.35-5.5

Ft4 19.80- optimal 11.9-21.6

Ft3 3.96 - optimal 3.1-6.8

Anti TPO - 33.3 optimal < or =34.0

Anti - Tg - 21.6. optimal < or =115.0

Jan 3 - after 2 days of no dose and 5 days of dose reduced back to 100mcg

TSH 24.395

T4 20.52

FT3 2.47

Anti Tpo 20

Anti Tg 15.3

many thanks in advance

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SlowDragon profile image
SlowDragonAdministrator

You need to test Vitamin D, folate, ferritin and B12

What were most recent vitamin results and how long ago was test

Essential to take iron at least 4 hours away from Levo and 2 hours away from other supplements

Calcium and vitamin D should also be at least 4 hours away from taking Levo

Are you also taking magnesium supplement and/ or vitamin B complex and/or B12 injections or separate supplements

TSH 8.09 - optimal 0.35-5.5

Ft4 19.80- optimal 11.9-21.6

Ft3 3.96 - optimal 3.1-6.8

Was test done as recommended, early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

Do you always get same brand levothyroxine at each prescription

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

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

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

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 you 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

rosie64 profile image
rosie64 in reply toSlowDragon

Thank you for reply. I take thyroxine at night , prior to going to bed, as close to an empty stomach as possible, and away from supplements. I will maybe try taking in am and see if that makes a difference.

Tests were done in afternoon as had to travel to appointments & that was best appointment I could get. Did take thyroxine night before but it was about 14 hours.

I’m on daily adcal d3 & 8 weekly Vit B12 injections for pernicious anaemia.

Don’t take a B complex.

Will post last results if I can find them. I know, as is expected, B12 was high due to injections, and iron was bit low.

SlowDragon profile image
SlowDragonAdministrator in reply torosie64

I take thyroxine at night , prior to going to bed, as close to an empty stomach as possible, and away from supplements.

Continue as this generally as it frequently gives best absorption

But just BEFORE a blood test change time of last dose levothyroxine to 24 hours before test

And always test early morning

High TSH

Your TSH is very high

Do you remember to take Levo everyday. Using a weekly pill dispenser makes it easier to see if you have missed a dose

Next step test full thyroid and vitamin levels after being on constant unchanging dose and brand Levo for at least 6 weeks

rosie64 profile image
rosie64 in reply toSlowDragon

I do normally take it regularly, but will try the pill dispenser to be sure.

SlowDragon profile image
SlowDragonAdministrator in reply torosie64

As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and may help maintain B12 levels between injections

so I suggest you start a vitamin B complex now

Check your vitamin levels at next test

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70:

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Once all four vitamins are at GOOD levels

Vitamin D at least over 80nmol

Ferritin at least over 70

Obviously your B12 will be good as on B12 injections

Folate will be good once on daily vitamin B complex

If once all vitamins optimal, and testing correctly, last dose levothyroxine 24 hours before test, giving result of Ft4 is at top 1/3rd of range …….if Ft3 remains low then look at seeing thyroid specialist for T3 prescribed alongside

Because of long wait on NHS, you would probably need initially to see privately

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS

thyroiduk.org/contact-us/ge...

It is increasingly possible to get T3 on NHS

Initial trial must be via endocrinologist, before care and cost taken over by your GP

over 67,000 prescriptions in England in last year

openprescribing.net/analyse...

McPammy profile image
McPammy

Your TSH is rather high which indicates you haven’t enough in your system. Although your T4 result is good that seems odd. Your T3 is very low maybe this is why the TSH is higher than it should be. TSH should be around 1.00-2.00 to be symptom free. Which means adequate t4 and t3 levels. I think you need to add T3 liothyronine alongside your T4 levothyroxine medication. You must be having unwanted symptoms with those results.

I firstly thought the ferris fumerate might be stopping absorption as there’s a contraindication between it and levothyroxine but your t4 is more than adequate. You must always take ferris fumerate at least 4hrs away from levothyroxine.

rosie64 profile image
rosie64 in reply toMcPammy

Thanks McPammy. No I don’t feel great but that is an ongoing issue. I’m wondering if there is some sort of central issue going on here. Strangely though, for first time in 30 years sinsce starting Levo, my feet are not so swollen?????

McPammy profile image
McPammy in reply torosie64

Reduction in swollen feet might be de to now adding levothyroxine and reduction over all in water retention. I found I had piled on too much weight even though I ate healthy. It was mainly water retention due to my metabolic rate being so low due to lack of thyroxine. Adding T3 medication some years later, which I needed all along, gave me a real energy boost, which meant I had the energy to exercise. I then lost 4st without even trying really. All I did was walk briskly twice a day round my village. I still continue to do that. T3 is really important to keep your eye on. TSH or T4 tests are not enough. You need to check your t3 also.

Your ongoing issue will no doubt be down to thyroid disease. It can cause so many issues it’s untrue GP’s try to treat each issue when all they need to do is treat the thyroid condition well. Remember TSH of 1.00-2.00 is your aim for being symptom free I can’t stress this strong enough!

rosie64 profile image
rosie64 in reply toMcPammy

Thank you McPammy. The swollen feet started after I stared taking Levo, in 1996, which is one of the things that are so confusing to me. I can’t get Tsh down as I seem unable to tolerate any more than 100mcg of Levo. I have thought for a while about T3, but it’s getting it when there isn’t the GP support. I’m so glad you are doing well. It’s a wee beacon of light when you hear of someone actually feeling better x

McPammy profile image
McPammy in reply torosie64

You could try going private and get a 3 month trial on combined treatment T4 plus T3 medications. I went private eventually to find my help and wellbeing. Without going private I really don’t know where I’d be today.

Think about it. If you’d like my private endocrinologist information just private message me as can’t mention names on the open forum.

I can’t tolerate high doses of levothyroxine. So adding the t3 really helped me no end.

rosie64 profile image
rosie64 in reply toMcPammy

Thanks folk, I’ve already been looking into it. I keep putting it off in hope that GP will somehow come through & things will improve. I don’t know who I’m kidding.

Sleepman profile image
Sleepman

I was similar to Mcpammy and needed T3 as well as levo.Your T3 is very low and T4 is at top end. Suggests poor converter.

rosie64 profile image
rosie64 in reply toSleepman

Thanks Sleepman. That is one of the possibilities I have been thinking about. I’m grateful to have the private blood results at least, though hope Dr does not dismiss them.

rosie64 profile image
rosie64

I’m wondering about trying Armour or something

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