Thyroid UK

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Can anyone help me interpret my thyroid test results please?

I had a thyroidectomy 7 years ago. I was on ridiculously high meds until was also diagnosed with Coeliac. Now take 175 mg of levothyroxine last thing at night. My levels aren't perfect but they're haven't been leaping about for ages, but they are again now. I don't take anything else but vitamins, in the morning.

Apparently I have Graves but I’m usually hypothyroid (even when i had a thyroid). . Just had these recent test results back shown below. My doc says I’m ‘borderline’ - but for what? I can’t make head nor tail of these tests, how can I have above reference limit TSH and also above reference limit free T3? how can two opposite things be high?

I would say my symptoms (breathless, angry, heart racing and craving sugar, even syrup isn't sweet enough) indicate that I'm overactive . No appointment to see doc til next week but she's not a thyroid expert either.

Thyroid function test

Serum TSH level 6.83 mu/L [0.3 - 5.0]

Above high reference limit

Serum free T4 level 12.4 pmol/L [7.9 - 16.0]

Thyroid function test

Serum free triiodothyronine level 6.4 pmol/L [3.8 - 6.0]

Above high reference limit

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jodenice

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jimh1112 years ago

It looks like you are overactive, especially in view of your signs and symptoms. If you still have Graves' antibodies they can stimulate T4 to T3 conversion giving you high T3 compared to T4 levels.

Sometimes antibodies interact with the TSH assay which is an 'immunoassay', it uses antibodies to measure TSH (loosely speaking, I don't know the precise mechanism). The result is that in a small perecentage of people the TSH assay gives a false high result. The answer is to do another TSH blood test with a different assay. Your doctor should contact the biochemist and ask for advice about these results and request another blood test using an appropriate assay. In the meantime I would go by symptoms and fT3, fT4 levels.

jodenice in reply to jimh1112 years ago

Thank you. I'd never heard of this, will look it up, cheers.

SlowDragonAdministrator2 years ago

Essential to test vitamin D, folate, ferritin and B12

Presumably as coeliac you are aware of needing to supplement to maintain optimal vitamin levels

What vitamin supplements are you currently taking

When were vitamins last tested

jodenice in reply to SlowDragon2 years ago

Yes, i rattle every morning. i'm on Vitamin D, Iron, Magnesium, Zinc, B6, Eve primrose oil, B12 injections

SlowDragonAdministrator in reply to jodenice2 years ago

Presumably you know that 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)

Magnesium often best taken afternoon or evening

You might want a daily vitamin B complex rather than just B6

We are often low in folate (B9)

Vitamin B complex with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

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

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

endocrinenews.endocrine.org...

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

DippyDame2 years ago

Your high FT3 suggests you are converting T4 well (even if conversion is increased by antibodies) and, that T3 is reaching your blood (high FT3)

Maybe the T3 is getting " stuck" in the blood and is just sloshing about there doing very little.

T3 gets to work once it reaches the cells/tissues, if it doesn't reach there via T3 receptors then you feel undermedicated...and symptomatic.

I wonder, therefore, if you have a problem with getting the T3 into your tissues/cells i.e a form of thyroid hormone resistance (RTH).

This was my problem for over 20 years ( probably all my life even)and the more the GP increased my levo the worse I felt and as the years went by the problem increased until I could barely function.

I'm only clutching at straws for you, but it may be that you need T3 (not T4) in a dose big enough to overcome the resistance and to act like a battering ram to force the T3 into the cells. Only the T3 that enters the cells is active the remainder sloshes around in the blood until it is metabolised and is expelled by bowel and bladder.

I read extensively and generally followed the work of the late Dr John Lowe, amongst others...

It worked for me.....my profile details my thyroid journey.

On T3 only my FT3 is over range ( TSH and FT4 suppressed) , with RTH it needs to be so. It freaks my poor GP out, this sadly wasn't part of her med training!

For general background info you may find this of interest.

healthrising.org/blog/2019/...

But, you won't convince many medics of this, they now focus on lab numbers and tick boxes not good old fashioned clinical evaluation. Like many others here I self medicate.

I take it you have optimised vit D, vit B12 folate and ferritin all essential to thyroid function.

I'm not a medic just another member who has had a long, bumpy thyroid journey to improvement....I could be absolutely barking up the wrong tree but it might just be a another avenue worth exploring if solutions don't appear elsewhere.

Just a few thoughts

Best...

jimh111 in reply to DippyDame2 years ago

'breathless, angry, heart racing and craving sugar' tend to suggest hyperthyroidism. Conversion takes place within cells so hormone is definitely getting into cells atlhough it is always possible it doesn't bind to receptors (except for hyper signs).

jodenice it would be useful to measure your pulse, even better if you can do it the old way to get a feel for the depth and strengh of the pulse as well as speed. A stong quick pulse would indicate hyperthyroidism.

jodenice in reply to jimh1112 years ago

I will charge my fitbit and wear it later

DippyDame in reply to jimh1112 years ago

I have most of those symptoms, plus anxiety, when my T3 is low, I've discovered they indicate a dose increase is needed.

I'm not convinced jodenice is hyper despite her symptoms and would be inclined towards your suggestion, "it is always possible it ( T3) doesn't bind to receptors" but finding an endo to follow this up and prescribe T3 would be like looking for a needle in a haystack! It looks as if her current T4 dose is not working and the available T3 just is not / cannot fulfil it's function adequately .....more required?

That's why I self medicate...

The more I read about current thyroid diagnoses and treatments the more I despair for thyroid patients who don't respond to LT4.

But, I'm not a medic and can only comment based on my own experience.....not advise.

I also wear a fit it and find it very useful

jodenice in reply to DippyDame2 years ago

I think for me, the main symptoms are that desperate need for something super sweet - that’s always been when I’m hyper. Plus that irritability. But I’m getting out of breath talking too. Other than that the symptoms are similar for either hyper or hypo.

DippyDame in reply to jodenice2 years ago

I think you may be confusing "hyper" (hyperthyroidism) with overmedicated. If you are hypo you cannot physically become hyper. Symptoms of overmedication and undermedication can be similar....it can be confusing!

You say your heart rate is averaging 60bpm which doesn't strongly suggest hyperthyroidism.

I certainly have a sweet tooth and have to overcome the urge to dip a spoon into a Nutella jar for instance!! Not a wise move on many levels!

It might be worthwhile looking at your cholesterol and cortisol levels.

This article may be of interest, I know nothing of the author but she makes some interesting points maybe worth pursuing

bellalindemann.com/blog/why...

Good luck

jodenice in reply to DippyDame2 years ago

Yes I'm not talking about a standard sweet tooth, I'm talking about an abnormal desire to drink syrup from a jar and nothing else. This is not not my norm lol, i'd have no teeth left 😁

jimh111 in reply to DippyDame2 years ago

Strictly speaking hyperthyroidism only applies when there is excess hormone from the thyroid, excess intake is thyrotoxic.

I always refer to excess hormone ACTION as hyperthyroidism and insufficient action as hypothyroidism. This allows us to focus on signs and symptoms rather than blood tests. I also dislike the term thyrotoxic because it suggests thyroid hormone is a toxin, or indeed high serum hormone is toxic - you and me know this is not always so.

In jodenice’s case it’s quite possible her Graves’ antibodies are causing excess T4 to T3 conversion leading to excess T3 levels. A form of hyperthyroidism that wouldn’t come under the strict definition of excess secretion. When I needed very high doses of thyroid hormone I would check I wasn’t on too much by trying to reduce my dose a little every month or two. jodenice if you don’t have a blood test in the next week or two I would try stopping your levothyroxine for a couple of days and then reducing it to see if you feel better. This will give an idea of whether you are hyper.

helvellaAdministrator in reply to jimh1112 years ago

Strictly speaking hyperthyroidism only applies when there is excess hormone from the thyroid, excess intake is thyrotoxic.

Agreed! I think we desperately need these words to be properly, thoughtfully, scientifically defined. And in ways that are useful and relevant to medicine - doctors and patients.

The possibly useful word hyperthyroxinaemia might as well not exist for its frequency of use. (Also, its focus on thyroxine doesn't help).

Few ever seem to consider the term hypothyroidism to require being limited to the thyroid not producing sufficient thyroid hormone. Under-medication or the effects of others medicines, etc., are all thrown together under the one term.

DippyDame in reply to jimh1112 years ago

That old stumbling block, semantics...I agree I really dislike the term thyrotoxic too....medics seem to use it almost as a threat!

I agree stopping levo for a few days may help jodenice find the way forward ...with a half-life of about a week she needn't be concerned about the break. That concern was what initially prevented me from stopping for a few days when I realised I had eventually become overmedicated....my progress may have been quicker if I'd understood that! We live and learn!

I wish medics understood that we (thyroid patients) do not come off a production line, we are all individuals....and need to be treated as such.

Good luck jodenice, keep us posted.

jodenice in reply to jimh1112 years ago

Thank you all, yes, I'm sorry, I don't really know what else to use in their place. In my head, I'm either over or under.

I didn't take any last night. I was trying to talk on the phone yesterday and I needed to take breaths before I could finish a full (short) sentence so I'm taking that as another sign that I'm over (medicated), so a few days with no meds and I'll take 150 for a bit and see how it goes. I had actually mentioned to the doctor two weeks ago that I felt my eyes looked like they were changing and as I have Graves, maybe this can be attributed to that?

Thanks to the added complication of Coeliac disease, my doses do change, as I am able to absorb more, I have to lower my dose. I used to be on 250 a day! But this crept up on me. I'll speak to my doctor on the 17th and hopefully she'll be able to organise a few upcoming and regular blood tests for me to monitor it

jodenice in reply to jimh1112 years ago

So last night was the second night with no meds. The sweet cravings are slowing down slightly but I’m an emotional mess! Is this normal? I feel like I’m going mad 😓

jimh111 in reply to jodenice2 years ago

I wouldn't expect any emotional changes, I would settle on 25 mcg less than you were on and see how you go for a while.

jodenice in reply to jimh1112 years ago

Yeah my pulse isn’t that fast. Averaging about 60bpm at rest.

jimh111 in reply to jodenice2 years ago

That’s certainly not high but I would try reducing your levothyroxine as I suggested above. Measuring fT3 will be really useful, especially if they can measure it a couple of times a few months apart. Sometimes there can be thyroid remnants that can kick out T3 erratically.

SlowDragonAdministrator2 years ago

Recommend wearing a Fitbit or equivalent to record resting heart rate and activity levels

pennyannie2 years ago

Hello Jodenice

I too have Graves Disease but had RAI treatment is 2005 and rendered hypothyroid and put immediately on 100 T4 - Levothyroxine.

Graves is an auto immune disease and as such it's for life and removing the thyroid simply switches the patient from what is considered a life threatening health issue to a life limiting health issue that is generally managed in primary care.

I describe myself as being with Graves, post RAI thyroid ablation, and now managing lingering Graves, thyroid eye disease and hypothyroidism.

My symptoms at diagnosis were insomnia, exhaustion and dry gritty eyes and I now realise I have been hypothyroid for most of my life.

I too can be exhausted, and I'm easily upset, and not as resilient as I was prior to diagnosis.

I think it's a combination of issues including having lost my thyroid, not being optimally medicated in both thyroid hormones and vitamins and minerals and the need to understand and support my immune system.

I would tend to ignore the TSH reading - as it's the least important of all the measures, and you haven't a thyroid so your feedback loop broken.

You may well feel better with a T3/T4 combo as each hormone can be tweaked independently as most people feel at their best when both these vital hormones are balanced in the range and generally both up in the upper quadrant.

Your T4 is only around 50% through the range whilst your T3 is at slightly over 100 % :

The blood test result is somewhat confusing as most of us have the opposite problem of a having high / over range T4 in order to get a mediocre T3 .

I see in a previous post you were attempting to source T3 yourself.

Did you succeed and how did you get on if you trialled a T3/T4 combo ?

I'm now self medicating and find I feel much calmer with less anxiety.

I take Natural Desiccated Thyroid and look after myself, so it could also be the fact that I'm not seeing a doctor and restrained by guidelines and ranges that never worked in my favour, but lead to me being put on anti depressants as well as T4 only medication.

jodenice in reply to pennyannie2 years ago

Hi, someone sent me some but I never used it. I didn’t really know what I was doing (still don’t!) and I didn’t want to muck about with it. I don’t seem to have any option of anything but T4 here in the uk, the endocrine at my hospital is very dismissive. Are you in uk?

pennyannie in reply to jodenice2 years ago

Hey there :

Just rereading your initial post :

Why did you have a thyroidectomy ?

If your doctor suggested you have Graves - did he run the antibody blood test to confirm his suspicion - or did he actually mean that you might be a little bit " hyper " and suggest a reduction in your medication ?

Yes, I'm uk as are you and yes, routinely T4 - Levothyroxine is the only thyroid hormone replacement that you are offered on the NHS -- and from my experience dismissiveness of the patient's symptoms and opinion the under current that runs throughout all medical appointments.

I notice you mentioned supplementing iron - how low is your ferritin as that can cause breathlessness - do any of your supplements contain biotin, as this can skew blood test results and should be " left off " for at least 7 days before taking a blood test.

I don't pretend to understand your T3 and T4 blood test readings as they " look " the reverse of what we usually see on here :

Do you have any other printouts and does this result show a similar pattern or is this blood test very different to all those before it ? If so, what has changed ?

Ideally you need a little less T4 medication which in turn will reduce your T3 levels - you are only slightly over medicated and this small decrease in medication should bring your T3 level back into range and hopefully reduce the symptoms experienced.

I'm taking a total different thyroid hormone replacement NDT which is made from pig thyroid and contains all the same known hormones as that of the human gland, namely, trace elements of T1. T2 and calcitonin plus as measure of T3 at around 9 mcg and a measure of T4 at around 38 mcg in each grain.

I take 1 + 1/2 grains daily which totals out at 57 T4 + 13.50 T3 and my T4 comes in at around 25 / 30% with my T3 coming in at around 90 / 110% through the ranges and I'm feeling pretty good, BUT the ranges aren't intended to be used with NDT anyway and are just a formality that I do once a year now, more to check my vitamins and minerals than anything else.

NDT was used successfully for over 100 years prior to the introduction of Big Pharma, and Levothyroxine and the blood tests and ranges, guidelines, and you simply dose to the relief of symptoms and not a blood test score card system.

I do have that " afternoon dip " in energy but at 73 maybe that's allowed ?

First a foremost we need to see a full thyroid panel TSH, T3 and T4 , antibodies, inflammation, plus ferritin, folate B12 and vitamin D so to see the relationship between them all.

If your doctor is unable to action these for you there are private companies on the Thyroid uk website who are the charity who support this amazing forum, and who will undertake these for you and then when with the results post these up again, in a new post, along with the ranges, and you will receive a clearer picture of where you are in all this.

jodenice in reply to pennyannie2 years ago

Ah really interesting. Is it expensive, I presume you have to buy privately?

pennyannie in reply to jodenice2 years ago

Hey there ;

NDT is said to be available through the NHS on a" named patient only " prescription but this actually means that your doctor needs to be supportive of this treatment option and I read many doctors don't know even of it's existence.

I wouldn't suggest any one self medicate without fully exploring the options through the appropriate NHS channels first and having the knowledge and confidence in themselves before even thinking of " going it alone " .

jodenice2 years ago

Ok new results. I switched down to 150 mcg per day. My results are going haywire and I’m also noticing slight problems with vision - nothing serious, just bit blurry

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