Gone backwards?: Hi all. So, the thyroid blood... - Thyroid UK

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Gone backwards?

lau99 profile image
16 Replies

Hi all. So, the thyroid blood tests that I took last week have come in, and I'm having some real mixed feelings about them. It turns out that sometime between December and now, the 200mcg dosage of Levo that I've been taking seems to have sprung into action, and according to these results, has made me hyper all over again. TSH: 0.01 T4: 30.8 T3: 5.4 (unsure of this lab's exact ranges, sorry). Previously my TSH was at 4.0 on this same dose.

So, T3 medication is probably out the window for real now. I'm so confused and strangely sad about these results. I just thought I was finally getting somewhere, but now I'm stuck again. I don't feel hyper at all, I don't feel much different than I did when being hypo, in fact, other than the fact that I'm slightly less bloated since being on prucalopride. Still heavier than I used to be/I'd like to be, still constipated (which has its own problems too), still feeling depressed about my situation, especially. Could it be that me taking my Levo the day of my blood test skewed the results? I didn't know I was going to have a test that day, so I took it as normal. Any input would be appreciated x Just want to feel normal again.

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lau99
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pennyannie profile image
pennyannie

Hey there again Lau

In short, you are not hyper, ignore the TSH and in fact this blood test is not valid as you say you took your medication beforehand so, yes, the T4 result is too high and over range because you had medicated yourself beforehand.

So, if we discount the TSH as once on any form of thyroid hormone replacement the TSH is the most unreliable measure of the 3 and more especially the TSH is known to be an unreliable measure of anything in Graves Disease patients.

Your TSH may never recover from when your hyper, your antibodies sent it down there when you became hyperactive and there is no guarantee it will ever recover- so best not to rely on it for anything.

Your T3 looks to be about 62% through the most usual range of 3.1-6.8 - is this an improvement on previous levels - sorry I can't remember and will loose this if I go on a hunt to find it.

It would help if your vitamins and minerals could be tested alongside a rerun of the above test as I'm sure if you explain you had just taken your medication it will be agreed to being repeated.

This doesn't mean you will not able to access T3 on the NHS - this is just the beginning of trying to monitor you on T4 as per the guidelines and it maybe a few months before you will be considered a suitable candidate for what, to me, seems an obvious first step in helping you get back on track, regain your health and return to life after a thyroidectomy for Graves Disease.

Lalatoot profile image
Lalatoot

Your ft4 is high because you had taken your medication. Your Ft3 could probably be a little higher for you to feel well.

You will need to get a few blood tests done over the next 6 months or so to demonstrate that this was a blip and that conversion is bad.

lau99 profile image
lau99 in reply toLalatoot

Okay...I will tentatively say that I'm a bit relieved to hear that. I'll ask my Dr's secretary if it would be possible to get another blood test where I'm more prepared. How long before the test would you recommend I not take my thyroxine for?

Lalatoot profile image
Lalatoot in reply tolau99

24 hours before.

lau99 profile image
lau99 in reply toLalatoot

Thank you :) My endo has just contacted me to say that he doesn't think me taking my medication as normal that day will have had any effect on my test results, do you think I should still try stopping my levo for 24 hours and then doing private blood test? And, from these (albeit skewed) results, do I seem to be converting the T4 okay?

Lalatoot profile image
Lalatoot in reply tolau99

Can't comment on conversion with the skewed figures. One of the reasons we allow 24 hours after a dose is that as patients we want our results to be at their low levels not their peaks. If we take our medication and test when it peaks the doctors think that the peak is our normal level and try to reduce meds because of the high result.

pennyannie profile image
pennyannie

The TSH was originally designed and introduced to be used as a diagnostic tool to assist a doctor in making a diagnosis of hypothyroidism and was never intended to be used for patient monitoring or dosing, once on any thyroid hormone replacement.

There is a natural body feedback loop which works very well for the majority of thyroid patients on Levothyroxine, and it's obviously cheaper to run one blood test instead of three.

However when a patient has had a medical intervention and the thyroid the gland either removed by surgery or burnt out in situ and disabled as with RAI treatment the feedback loop is broken and it is essential to measure both the T3 and T4 levels and monitor and dose both these vital hormones to bring them into range and to a level of wellness acceptable to the patient.

It's a bit like having to look a bit further and be more thorough as our car dashboard fuel gauge - the TSH - isn't reliable anymore, as our own engine, our thyroid, isn't working. and our electrics now unreliable. So we need to release the bonnet and look underneath and manually measure how much fuel we actually carry, namely measure the T3 and T4.

Some people can get by on T4 alone, some people simply stop converting the T4 into T3 at some point in time, and some people simply need both essential hormones dosed and monitored independently.

Most people seem to feel at their best when both T3 and T4 are in the upper quadrant of their range with a ratio of T3/T4 at around 1 / 3.5-4.50 with most people tending to prefer a ratio nearer the 1 / 4 or lower and all you need to do to find out your ratio when on Levothyroxine is to divide your T3 blood test result into your T4 blood test result.

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3 with T3 said to be about 4 times more powerful than T4. and read most people use about 50 T3 a day just to function.

Currently your body is getting T4 - Levothyroxine which is a storage hormone, and your body needs to be able to convert this into T3 the active hormone that the body runs on.

Your conversion can be compromised if your vitamins and minerals are not maintained at optimal levels, and it's necessary to measure ferritin, folate, B12 and vitamin D to check you have sufficient core strength to convert the Levothyroxine.

Some people aren't able convert the T4 into T3 even with optimal vitamins and minerals, and they ultimately get prescribed a T3/T4 mix and some people can't tolerate Levothyroxine at all and need to be prescribed T3 only.

Natural Desiccated Thyroid is another option and still available on the NHS on a named patient only prescription, and this is pig thyroid dried and ground down into tablets referred to as grains and contains all the same known hormones as a human thyroid gland with a specified amount of T3 and T4 in each grain.

Since you have lost your thyroid due to a medical intervention I think it's only logical that both T3 and T4 should be on your prescription for if, and probably when, both hormones will be needed, as currently you are missing around 20% of your overall wellbeing by not replacing like for like thyroid hormones.

I hope that makes some sense :

lau99 profile image
lau99 in reply topennyannie

Hi Penny, thank you as always for being so knowledgable about this topic :) I was just wondering, if by looking at this test (although it is skewed because i took my medication a few hours prior) can you tell if I'm a poor converter or not?

pennyannie profile image
pennyannie in reply tolau99

Hey there Lau

Yes, well, when just on Levothyroxine you can find out your conversion by simply dividing the T3 into the T4 blood test results.

The conversion ratio that most people use is 1 / 3.50 - 4.50 : T3 to T4 : with most people feeling at their best at around 1/4 or below :

I don't think the NHS pay much attention to this ratio, as the endocrinologist I saw, thought my ratio of over 1/5 acceptable and suggested I have dose reduction of T4 as my TSH was suppressed which therefore = overmedication ????

T3 is said to be about 4 times more powerful than T4 :

There are T3/T4 tablets available and most tend to have around a 1/4 fixed ratio :

Most NDT declare around 38 T4 + 9 T3 per grain of medication : a 4.2 fixed ratio : and read of some people topping up their NDT with a little T3 or a little T4 when they feel very close to optimum health for themselves : I seem to be lucky on just NDT with no minor adjustment.

I've noticed on here when someone starts introducing T3 to their T4 the advice is generally to take 6.25 mcg T3 with some people being advised to drop down their T4 by 25 mcg. accordingly.

So, if we look at this last result your conversion comes in at 5.7 but a pointless exercise as you had taken your medication prior to the blood test.

What about previous blood test results, are any of those worth looking at for a true figure ?

Conversion can be compromised for any number of reasons, obviously the usual suspects are low vitamins and minerals, and we can do something about these.

Conversion may also be compromised by other prescribed medications, and also I should mention physiological stress both emotional or physical, inflammation, depression, and aging or dieting.

Nanaedake profile image
Nanaedake

You say you are now taking prucalopride. I don't know what that is exactly but if its ameliorated your bloating symptoms, could it be affecting levothyroxine absorption? That would be the most likely reason for a change in thyroid status when on the same dose.

I doubt that taking levothyroxine before your blood test would make as big a difference as you've indicated between last readings and these ones.

In any case, if I take levothyroxine meds before a thyroid test the result is hardly changed. But we're all different. The only way to check is take the test again leaving levothyroxine dose until after the test and see what the result is.

Many, many things affect levothyroxine absorption.

lau99 profile image
lau99 in reply toNanaedake

Yes, I also thought about this being a possibility - perhaps I'm not as 'clogged up' so I can actually absorb the Levo better. Prucalopride isn't a laxative per se, but it helps train the bowel muscles to move again and was prescribed to me because of what we assume was a hypothyroid symptom. I guess it's another possibility to think about, but I' scared of going back down to 150mcg considering how awful I felt on it before (before prucalopride).

Nanaedake profile image
Nanaedake in reply tolau99

Well if it were me I would make very careful, slow changes so only reduce by 12.5 mcg and then retest in 6 weeks. I would keep same dose prescription because you can reduce slightly without a prescription change. That means you can easily increase.

Your intestinal problems may not be hypothyroid symptoms but could instead be linked to autoimmune disease. Have you got thyroid antibodies? Have you tried going gluten free? Which type of levothyroxine do you take? Have you tried a different type of levothyroxine?

lau99 profile image
lau99 in reply toNanaedake

Thank you for this advice. I do have Grave's antibodies, tried going gluten free for about 2 months and didn't recognise any considerable results. I have also tested negative for Coeliac. I usually take almus/accord, but I did have MercuryPharma once for a month, and didn't feel any difference between the two. As far as I know I don't have any side effects from my Levo, unless that is the cause of my current issues.

Nanaedake profile image
Nanaedake in reply tolau99

Batty1 has a good suggestion about magnesium. To support good bone health I eat 6 prunes a day for the boron use a magnesium spray or take magnesium citrate, eat some naturally fermented organic foods daily. I find this all helps maintain good gut health and keeps my levothyroxine absorption stable as well as supporting bones.

Batty1 profile image
Batty1 in reply tolau99

You could try magnesium citrate for your bathroom issues . I have severe IBS-C and this has help a lot.

NWA6 profile image
NWA6

Whoops 😬 scrap that test and do another one before you make any changes.

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