Latest results. Should I insist on further investigation or take the levothyroxine pills?

Latest results. Should I insist on further investigation or take the levothyroxine pills?

Hi,

I'm not currently on any medication and have yet to be diagnosed on the NHS due to some very bad luck. I am hopefully going to get diagnosed via an NHS blood test this month but would like some advice before my GP puts me straight onto levothyroxine as he's previously suggested he would.

My thyroid antibodies were both negative when I tested previously, so I don't know why my TSH is so high. I was thinking perhaps an ultrasound of my thyroid might show nodules or some other abnormalities.

Has anyone here been in a similar situation with negative antibodies and faced the same dilemma? I feel like I should reject the medication and ask for a referral to an endocrinologist. I am clueless as to what is causing my thyroid to behave like this, any suggestions would also be welcomed.

Thank you

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18 Replies

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  • That is a very odd result. Both free T4 and free T3 are reasonably high in the range. So TSH should not be that high, since its function is to raise T4 and T3. And you are not hypothyroid.

    I would ask for a referral to an Endocrinologist. Your high TSH is not in response to low thyroid hormones, so there is a possibility of other parts of thyroid axis being affected. The pituitary is the most common, but hypothalamus and parathyroid can also go wrong.

    I would not take levothyroxine. Too high T3 is no fun.

    How do you feel?

  • It's confusing because on my previous test, the results were as follows:

    TSH 5.83, Free T4 18.0 & Free T3 3.2 (References same as in attached result)

    I sometimes wake up fatigued and some symptoms that you might associate with hypothyroid like dry skin, poor immune system & gut problems.

    I appreciate the advice, I struggle to find any results similar to mine and feel a bit lost.

  • Also, you could start with the basics too and get your Vit B12, Folate, Iron (ferritin) and Vit D checked out as these can affect the way your thyroid functions and many people are deficient. What's your diet like, are you likely deficient in other things too?

    If you have stomach issues, then this is what you should focus on trying to resolve first as clearly an issue there. Food intolerance is easy issue to check - try an elimination diet to see if you have any food intolerances and see whether this helps your stomach. Gluten seems to be the one often reported, then dairy but sometimes other things. Bear in mind, if gluten is a problem, it would need to be 100% gluten free to be able to tell including cross contamination.

    It's hard to say without any other indicators or many symptoms what else it could be but at least you could rule this out as being the cause of stomach issue and then think about what else it could be if comes to nothing?

    Also look at optimising everything health wise - drinking enough water, getting enough sleep, healthy balanced diet making sure you're getting enough of what you need including all the micronutrients.

  • Thanks for the response, I did have B12, Folate, Ferritin, Zinc & Vit D checked. Only Vit D was slightly insufficient.

    I am lactose intolerant but mostly avoid such foods, I can still eat cheese strangely enough.

    My overall health has been bad for maybe 15 years, I am fairly sure there is something wrong with my body but this thyroid result is my only clue thus far.

    It's strange that my TSH was 7.48 but my free T3 & T4 were both in range and I felt okay that morning. I think the endo referral is the way to go.

  • You might want to post your vits and blood count on here to double check as sometimes what's in range is often not the case.

    Well, the only obvious symptom is your stomach issues so definitely worth a more structured approach to ruling intolerances/allergies out - these wont always be obvious - as in making your stomach hurt directly after eating, they can just make you tired even if you didn't eat such item for a few days. If you have an immune reaction to something, this can take weeks to die down from the last time you ate it. Removing things for a while and then adding them is the best way. If you rule all the basics out properly, you can then ask yourself what would cause stomach issues other than that :-)

  • Unfortunately, with chronic issues like that, if nothing's popped up in tests so far, you're unlikely to magically get the answer through tests anytime soon either. You have to go back to basics and double check everything 100% and start ruling things out and hopefully lose one or two symptoms in the meantime meaning you have less to work out. It takes time and effort but worth it in the long run. I eat really healthily for example and thought my diet was great but I used a website called cronometer which tracks absolutely everything and actually realised I was quite low on one or two of the tiny ones that are just as important. If you are lactose intolerant yet still eating cheese, have you actually tried not eating cheese for a few months to see if actually improves if you stay off longer and so on :-)

  • It's not strange you can still eat cheese. Different people can tolerate different types of lactose in small amounts particularly if it is fermented or processed.

  • Hard cheese is usually naturally lactose free or very low on lactose as it's reduced in the process of making cheese.

  • Yes, I know it's easier to digest for those who are lactose intolerant as only has a small amount of lactose in but if immune system doesn't like it, it would be worth trying as it could be a bit like me with a teeny molecule of gluten? Not saying it would help, Just thought worth trying maybe?

  • Correct, it only applies if one is just lactose intolerant

    But with dairy it's multiple things that can go wrong like casein intolerance or homogenising milk causes protein and fats to cut in so tiny pieces they can get through the wall of bowel and cause reaction.

    I avoid dairy like a plague most of the time as it doesn't just suit me. Taking enzymes that help digesting casein and lactose help a bit though but it's easier to avoid dairy all together as I get nasty painful muscles from it.

  • Oh just to explain, the reason it sprung to mind is that in my case, it was proven that gluten directly effects my thyroid and raises my tsh almost instantly. Endo is not sure how or why but figured if one food can do it, other possible too if you have a problem with it :-)

  • No doubt about it. Finnish doctor says that antibodies to casein are connected to TPOAB.

    I truly believe it too that there are several food that can affect your thyroid several different ways!

  • Yes me too, I am, I believe, casein-intolerant as I can't eat cheese without getting a painful gut reaction a day later. I just avoid all dairy now, has settled my gut down a lot. :)

  • The older result is much more the expected pattern. Your freeT3 is scraping the bottom of the range, so the high TSH is expected.

  • Do you have consistent tests? TSH follows circadian rhythyms so levels are highest first thing. You should always have the earliest available app and do an over night fasting test, nothing but water until after (inc any medications or supplements). That way you will be able to see true changes in levels better. Do you take a b complex that includes biotin? If so stop it a couple of days before testing as if can skew results.

    Even taking into account the above there is something going on but I dont know enough. I would agree your pituitary seems to be shouting very loudly for more thyroid hormone when your levels would be considered very good by most and would certainly give me a TSH of 1 or under.

    Your GP (as usual) is paying too much attention to TSH and not the whole picture, I personally would hold off on the levo and ask for an endo appt. A lot of treated hypo's would be very happy to have your frees. Being hyper is no joke and it looks more like you could be headed that way than hypo.

  • That is very useful to know about the biotin because I do sometimes take a Vit B complex with biotin.

    Thanks for the advice, I will be talking to an endo. Really glad to hear your experience :)

  • Info on the problem of biotin and the startling number of blood tests it can affect if the test machine uses biotin as part of the testing protocol :

    healthunlocked.com/thyroidu...

  • Thanks all for the great information, I will pursue an appointment with an endo. I will also try and test if my lactose intolerance is contributing to this high TSH in some way.

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