Thyroid UK
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Puzzled about results and effects of levothyroxine

Puzzled about results and effects of levothyroxine

Hello everybody.

Hee are my results which were part of a standard annual blood test, and for thyroid came back as marked Abnormal but my GP says is borderline and reluctantly gave me a two-month trial on 50 micrograms of Levothyroxine.

Serum free T4 level 12 pmol/L

Serum TSH levels 7.7 mu/L

And underneath, 'Above high reference limit'.

A year ago the TSH was 5.5.

Two years' ago it was 5.

Initially I slept so well on starting the Levothyroxine. After about 5 weeks this has changed to not being able to get to sleep for hours and then fractured sleep and I feel terrible.

This is not a full thyroid test, is it? I asked my doctor for one at the outset and she replied that it was - nothing about F3 or antibodies. I don't want to get in to an argument with my doctor! But what is going on? I am 68, and I think results relate to age too.

I have always had cold extremities and feel the cold generally. I have always slept badly but nothing like this for such an extended period.

I am too tired today to speak to my doctor and will do so tomorrow but advice would be welcome. I gather that the endocrine system as a whole can be badly affected by stress, which is a long-term problem for me.

But I don't like this climbing rate of TSH.

And I don't like the levothyroxine effects.

But you all seem to warn against asking to see an endocrinologist?

Thanks, kind people.

37 Replies
oldestnewest

Hey 👋🏻,

Could you Please post reference ranges ?

Yes this is not Full Thyroid Panel, you should do TSH, FT3, FT4, T3, T4.

Also you should do (VitaminD, Vitamin B12, Ferritin, Folate, Iron) Blood test

With your Symptoms you are Under-Medicated, I don’t think it’s relate to age, there something your body need that’s why you feel bad.

Your TSH should be 1.0 or less and your FT3 , FT4 in upper quarter, you feel cold, sleep bad, depressed, tired because you are under-medicated , once you be in right Dosage you will be fine and feel good.

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50 mcg is a starter dose for most people and you should be re-tested after 6 weeks and your dose adjusted accordingly.

For your thyroid hormones to work well and for you to feel well - it is suggested you need optimal levels of B12 - Folate - Ferritin - VitD - B12 needs to be over 500 - Folate and Ferritin mid-range and VitD over 100.

Are you in a position to have Private Testing done ? - if so there are companies that send kits to your home. That way you can have the tests that are needed and not done in the NHS. See link below ...

thyroiduk.org.uk/tuk/testin...

It is possible your adrenals have been affected as you have possibly be undiagnosed for many a year - it takes a long time for the blood chemistry to catch up with the body ! Adrenals love VitC - lots of it. Check out Cytoplan. Also Adrenals can be the culprits in upsetting sleep.

the above link may also help with further information about the thyroid :-) - should you need it !

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Most interesting. I have a link to a test, but if it was done privately surely th NHS would not act on it?

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They usually use the same labs ! Yes I have linked you to the Testing Companies above. When you have the results you can return here - with a new post - and people will comment and support :-)

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Hi Trill

Reference ranges are always needed to interpret tests. This is because ranges vary from lab to lab so we need your own lab's ranges to interpret your tests :)

However, TSH we know that anything above 3 is hypothyroid but here in the UK most doctors wait until you reach 10. So you were quite lucky your GP agreed to prescribe Levo. I expect your FT4 is at the bottom, or near the bottom of the range. Some ranges are 12-22, some 9-19 an some l7-17, or somewhere inbetween. So you can see why ranges are important.

You appear to be a few weeks into your Levo so should be due a retest. Normal protocol is to retest 6-8 weeks after starting Levo, an increase of 25mcg if levels show it is needed (which they should on the first retest), then testing/increasing repeated every 6 weeks until your levels are where they need to be for you to feel well.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.

Some people feel worse for a while when starting Levo and it looks as though you are probably ready for an increase. It takes time to reach our optimal dose.

A full thyroid test will include

TSH

FT4

FT3

Thyroid Antibodies - Thyroid Peroxidase (TPO) and Thyroglobulin (TG) and this tells us if you have autoimmune thyroid disease aka Halshimoto's. You can be negative for TPO but positive for TG but unfortunately the NHS rarely tests TG but we do have recommended labs which do home fingerprick tests for any that your GP cant or wont do.

Also important are vitamins and minerals, they are often low or deficient when hypothyroidism is present. So it's also useful to test

Vit D

B12

Folate

Ferritin

**

When booking thyroid tests, always book the very first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.

**

Always take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, for an hour either side as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

You can take it in the morning or at bedtime, whatever suits you best, just follow the advice about food and drink. If you have your main meal in the evening then leave 3 hours before taking Levo.

**

As you say stress is a problem for you, you may want to do an adrenal stress test at some time. As thyroid and adrenals work together then wonky adrenals wont be helping your thyroid. There is a 24 hours saliva test for adrenals that you can do at home and the best one tests both Cortisol and DHEA. See how you go at your next GP visit, come back with any new results, and if you decide to test adrenals I'll link to the companies that do that test.

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SeasideSusie, I see so many people recommending adrenal testing. I've had many 24hr saliva tests myself over the years. But no one ever seems to come back with a solution. If it's whacked nothing I've ever tried seems to fix it. Why is so much emphasis put on testing but real fixes never mentioned? I'm not trying to be awkward. I really don't understand the adrenal thing. I was told for years I had adrenal fatigue. I have so many graphs moving up and down the scale. I've taken every vitamin under the sun but never felt any better. What's the point of testing something that can't be fixed?

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Who has told you for years that you had adrenal fatigue?

Who is this "no-one" who never comes back with a solution?

What have you tried to fix your adrenal problem with?

Vitamins wont fix an adrenal problem. Vit C helps to support the adrenals but wont cure a problem.

Have you seen Dr Myhill's article about adrenal stress test and how she goes about dealing with certain results drmyhill.co.uk/wiki/Adrenal...

Then there are adrenal glandulars, adaptogenic herbs, all have different roles to play.

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I've seen Dr Peatfield for quite some time several years back now, a nutritionist before him, and now a private hormone doctor. The private hormone doctor isn't interested in my adrenal output at all having ruled out Addisons (my adrenal 24hr tests have always had me on high cortisol not low so why she though Addisons I don't know). She's giving me HRT and dabbling in my thyroid. I am not happy about the latter but I know what I want to achieve now and so I'm going to have to try to steer her.

Dr Peatfield put me on glandulars but I felt very unwell after a time and when he started me on Armour I had a massive crash of some kind or another. He started me too high I think. But was by then in hospital himself so I had to weather that storm on my own.

The nutritionist put me on adaptogenic herbs and told me not to take glandular products. I didn't feel worse but didn't feel better either.

The current hormone doctor won't even look at my adrenal testing results and simply says there is nothing that can be done for stressed adrenals, if they actually exist. And more or less threatened me not to take glandulars.

People on here and other forums regularly recommend adrenal testing. They never recommend what you are supposed to do to fix it. Yet they read thyroid tests well and recommend treatment options. It just puzzles me as to why the adrenal tests are recommended yet the treatment options are not talked about.

Perhaps I'm just not looking in the right place.

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The treatment options for adrenals probably aren't talked about because fewer people have experience of it and it appears to be more complicated. Obviously addressing stress is important and then using the right supplements. You also have to bear in mind that none of us are qualified or trained so it's very difficult to pass on anything other than what our own experience has been.

I can't suggest anything to treat adrenals because I don't know enough, only have my own experience to go by.

I consulted with a "hormone specialist" at a time when my cortisol was at the very top of the range for the first 3 samples and mid range for the bedtime one. I was advised to use a supplement which had a combination of 3 adaptogenic herbs. I didn't continue with the specialist but I did continue with the supplement and foolishly didn't retest. 2 years later I did repeat the test and found all my results were now flatlined at the very bottom of their ranges. So the supplement did work very well to lower my cortisol but now I have to raise it again so I am using Adrenavive. This time I know I will have to retest, which I will do 3 months after starting, so I can keep an eye on it.

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I often talk about looking after adrenals. But, one would have to know your exact results to be able to comment. Why don't you post them in a new thread and see what people suggest?

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I don't have any recent ones. I gave up doing them a couple of years ago as I didn't seem able to help them. I am not suffering the adrenal issues as much as I did then. But I suspect the morning is still an issue. I just can't tell if it's too low or too high as it used to be. I should probably get it done again now, but my issues have gone on so long now and I'm so depleted in both funds and energy that it's not high on my list. I need to use the money I do have for the thyroid testing now I've decided I need to take over again because my doctors aren't being on the ball enough.

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I haven't had any adrenal tests, greygoose.

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No, I'm sorry, that response was to FancyPants. :)

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Apologies!

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I had the folate this year and it is fine:

Serum folate level 6.3 ug/L [4.0 - 20.0]

'Trill' (bouncing with health!)

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Trill

Your folate is not fine, it is very low in range. Folate should be at least half way through it's range.

You need to increase your folate level, eating leafy greens will help, as will supplementing with a decent quality B complex containing methylfolate rather than folic acid.

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Wow. I am feeling less well with each reply! You are all so knowledgeable. I will do as you say. I do really like leafy greens and very aware how good they are for you. Trouble is with these tests is that if you are within their reference values the result will be 'Normal' and the doctor is not going to 'waste' NHS money by taking action when the official line is all is fine. She would be treating me for hyperchondria! I am fortunate that our dsurgery allows online access to the test results, so I am now going to go back further than those three annual tests . . .

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This is why we have to take responsibility in order to find wellness. We have to take charge - reading and reading everything we can so we can then ask the appropriate questions. I was diagnosed with Hashimotos back in 2005 - after a lifetime of illness. then the journey began - and now all these years later I am taking care of myself - testing/supplements etc. Admittedly living in Crete does make it a whole lot easier in getting the tests I want and can buy B12 jabs OTC along with Thyroid meds.

Leafy Greens may fix the Folate - but as we age we do not absorb the vitals quite so well :-(

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Always be very wary of being told by a Medic that results are 'fine ' - what they mean is that they are in range - but it is where they are in the range that is key. Always seek advice from the experts here - SeasideSusie being one :-)

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If you want to cheer yourselves up; go look on youtube at an excellent comic sketch called 'The miraculous TSH test' it is followed by a similar cynical look at the allopathic viewpoint on adrenal fatigue. I am now looking at buteyko breathing, which has science behind it in the form of logic. I am NO EXPERT so don't throw stones, but ... when the thyroid seems to be failing, it is usually due to a deeper underlying problem, usually stress which messes up the breathing and can be poor conversion of T4 to T3 in the liver. Just some thoughts to share, so if they help good, and if not, just trying to help.

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Yes it is a good video and often posted 😊 Was your reply intended for me ir Trill ? Trill will see it as it's her post/thread ...

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SeasideSusie (that could be my username too): do you think I shoud therefore carry on with the last 10 days of the 2-month trial of levothyroxine? Only I hate to admit it but after hours - quite relaxed - of lying awake each night and increasingly worsening, I have got up and had a large tot of gin. The only thing which knocks me out. I am now quite terrified about taking another levo.

Also, I have been going back through my tests to 2012.

These are TSH:

2012. 6.0 (borderline, above high reference limit but marked normal result overall)

2013. 5.7 ('above high reference limit' but result labelled normal)

2014. 4.5

2015 sample unusuable and not repeated

2016. 5.7 (above ref limits; results overall borderline)

2017 5.4 (marked normal)

2018. 7.7. (marked above reference range and total blood result Abnormal).

Thanks again from this thyro-newbie.

Shocked too to see my renal scores are above reference range so hope I can find such a good expert site on that issue!

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What time do you take your Levo? You could change the time. Experiment to see what suits you best.

Do you have any other effects from taking Levo or is it just the sleep problem?

What brand of Levo are you taking? Some people find that one brand may cause them problems but a different brand is fine.

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It's Actavis. I was instructed to take it in the morning which seems standard advice. Then the pharnacists said caffeine will nullify its effects so you must leave an hour before you have any caffeine. That seemed a tall order for me - to wake up and take nil by mouth except the pill for a whole hour.No life-affirming coffee! So I checked it out and it can be taken atnight, 6 hours clear of caffeine. Sigh.

No other effects except when I wash my hair I lose less of it. And I think I am feeling the cold less in the house.

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I mentioned in a reply above

"Always take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, for an hour either side as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours."

That is standard advice here. You can take your Levo when it suits you, following this advice. I take mine in the early hours of the morning when I need a bathroom trip. I keep it on the bedside table with a glass of water. It keeps it away from all food, other drinks and other medication/supplements.

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I would do that and usually wake in the night for ther loo but I use the opportunity to take my prescribed clonazepam as that helps get me back to sleep. So I can't do two at once. But I have moved the other prescription med to about 6.30pm so I can take the levo alone at bedtime. How complicated!

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I would really like to know if there are any comprehensive home thyroid tests (more than TSH) if there are any, Susie.

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Definitely, and the one most often recommended here tests everything I mentioned in my first reply above. You can do it as a home fingerprick test or arrange a venous blood draw if you prefer (extra cost unless your surgery or local hospital will do it). Best value, as it is on special offer until the end of the month with £20 off, is this one

medichecks.com/thyroid-func...

Same test with another of our recommended labs is

bluehorizonmedicals.co.uk/t...

Both companies are used by hundreds of our members, are very reliable and use accredited labs (same as NHS). No guarantee that your GP will accept them, but if there are any problems and your GP doesn't accept the tests, it's then easy to ask them to do their own tests.

Do the test as early as possible in the morning, fast overnight (water allowed) and leave off Levo for 24. If you take any supplements then leave B Complex or Biotin off for 3-5 days beforehand and iron supplements for a week, anything else take after you've done the test. Post back to the lab Monday to Wednesday if using first class post, Monday to Thursday if using Special Delivery Guaranteed Next Day by 1pm.

The comments that come with the results will follow the normal NHS guidelines (their doctors will have been NHS trained) so not always worth having. Post results on the forum for interpretation and suggestions for the way forward.

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Phew. Splashed out on the first one. Thank you.

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OK, when you have the results then post them in a new thread, with reference ranges, for comment. Either link back to this thread or give relevant information, as the forum is so busy we can't remember past posts.

Do the test Monday - Thursday and post as advised above. Not a good idea to post normal first class on a Thursday, it could end up not being delivered until Saturday or Monday and that's too long for the blood to be hanging around. Don't do it/post on a Friday, Saturday or Sunday.

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Trill, I'm sorry you are feeling so unwell. I too am on 50mcg of Levo after having my diagnosis and treatment messed up for several years. I am 2 weeks out from my next test and I feel awful too. So you have my sympathy. I am just hoping the blood test will show low FT3 and FT4 and still too high TSH so that I can get a rise. I'm testing privately to get all the tests I need. But even so the private doctor has a bit of a wishy-washy idea on how to treat the illness. I know what to do, but need her to agree for the prescriptions!

We can do this! Others have done it before us. We will get there.

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How you feel does not always correlate with their ' you should feel ok' findings. Cheer yourself up and look at this on YouTube 'Our Holy Miracle of the Infallible TSH Test' although funny and cynical, it is very true.

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You are simply ready for next dose increase. 50mcg is only a starter dose

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

Essential to test TPO and TG thyroid antibodies, if these are high then cause is Hashimoto's

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after

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

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Trill, keep going. Don't stop taking it now. Get your test done and take it from there. You are almost certainly in need of a 25mcg raise, as I most certainly am. It's hard waiting. It's very hard! But if you stop now, you will have to start again at some point because your list of annual tests show that you have been hypothyroid for years. I suspect I'm the same. I would love to ask the GP for a list of all my old tests. Haven't yet plucked up the courage for that one.

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Can you see your old tests online, as some doctors allow you to have online access to your tests. If not ask for printed copies of them. They should have some of your previous tests in your records. They might make a small charge for printing. If you live in the UK you are legally allowed access to them. I have started asking for a copy each time so I can compare each thyroid or vitamin test done. Best of luck

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I have all my test results from recent years. I'm just wondering if they have any going way back which might give me a baseline to work towards.

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Thanks Elwins: I do and I have. See above. And as FancyPants54 says above, it seems from calling them all up today since 2012 I have been hypo for all those years bar one, possibly, which was TSH 4.5. The tests even note the result is above the reference and this I simply cannot understand as the overall blood test is listed as either normal or borderline. But the jump in the last year has been 50% higher, to 7.7. I feel cross about this discovery, and although my GP is very sweet, anxious about discussing this with her as she was somewhat testy about being asked for the figures for the last test - obviously irritated to give them.

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