Recently diagnosed with Hypothyroidism - Thyroid UK

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Recently diagnosed with Hypothyroidism

Tish1660 profile image
5 Replies

Hi everyone :)

I'm relatively new to this hypothyroid thing, having been diagnosed a year ago. I'm totally confused by it all, what with the T4, T3, TSH...(MFI, TCP...The list goes on!). Everyone seems to have a specific 'number' given to them after tests, but all I get from my GP is 'Levels are normal'. Not that they would make an ounce of sense to me anyway, but it got me thinking - If I'm taking the medication, then the levels are going to be 'normal' aren't they? The meds are what keeps it that way. Nonetheless, I'm still dog tired, still aching everywhere, still got brain fog and still smiling one minute, snarling the next. Yet everything is 'Okay'. My GP said it would take a 'good while' for the Levothyroxine to kick in, but he's just too vague. He upped my dose from a measly 25mg to 50mg, but doesn't think I need a higher dose. I don't even know what to ask him! I have other health issues - Mainly arthritis in my spine, but I don't know where the pain is coming from in my arms, elbows, and even my skin! I've had friends asking if maybe I have FM, but my GP is adamant it's not. I don't know what to think or do any more :( If anyone can suggest anything, it would be much appreciated x

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Tish1660
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greygoose profile image
greygoose

Tish, you need to ask your doctor for a print-out of your results, it's your legal right to have them, and if you ever hope to take control of your own health, you need to have them.

Of course it's all very confusing in the beginning - and it doesn't sound as if your doctor is very forthcoming with information, but then again, he probably doesn't know much about it himself!

But no, just taking the 'medication' doesn't mean your levels are going to be 'normal' - it's not as simple as that. And, besides, there's no such thing as 'normal' where thyroid is concerned. By 'normal', he just means that they are 'in range', but being 'in range' isn't good enough, it's where in the range that they fall that is important. And, by the sound of it, yours aren't in the right place!

It doesn't sound as if your doctor knows much about thyroid if he thinks that 50 mcg is going to be your optimal dose! It's just a starting dose. When did you start on that? Because you should have a test six weeks after starting it. That's the time it takes to 'kick in'. And if you're still having symptoms, you're going to need another increase.

A quick run-down of the tests :

FT4 : T4 is the hormone the thyroid gland makes most of. It is a storage hormone, basically, and has to be converted into T3. The 'F' in the test name means 'Free', the hormone that is available for your body to use, to convert to T3. This level should be up in the top quarter of the range.

FT3 : The gland makes some T3, but most is converted from T4 in the liver, and the body cells. It is the active hormone and every cell in your body needs it to function correctly. It should be up the top of the range - well, that's where most people on thyroid hormone replacement need it to be to feel well.

TSH is a pituitary hormone, that is secreted to stimulate the thyroid to make T4 and T3. This should be at the bottom of the range, around one or lower. And it doesn't matter if it's suppressed. Although your doctor will no doubt say different!

MFI and CTP... Don't know those, they aren't thyroid related. But has he tested your antibodies - TPOab and Tgab? These are important, so if he hasn't tested them, best to ask him.

And has he tested vit D, vit B12, folate, iron and ferrritin? Hypos are very often low in nutrients, due to absorption problems. But you need those to be optimal in order to be able to use the hormone you're taking. So, best to ask for those, too.

And when you get your results, post them on here, and someone will be able to help you understand them.

Well, that's enough for one post! lol Don't want to confuse you even further. But whatever your question, there will always be someone here to answer it. You're really not alone.

Hugs, Grey

Tish1660 profile image
Tish1660 in reply to greygoose

Thank you Grey for all the info. It's a big help getting me started on educating myself with this illness. (Btw - MFI & TCP were just letters! My point being, there are so many! Lol!)

I don't think I've been tested for vitamin deficiencies - No one has mentioned it to me. Tomorrow morning, first thing I will be contacting the surgery for a print out of my levels to find out what's going on. As I mentioned to Flower007 - When I went for my last lot of blood tests I asked if I should take my tablet beforehand and was told to take my levothyroxine as normal (When I get up) as it would be accounted for in the results, which I thought odd, but didn't question it further. It obviously makes a difference though. No wonder everything came back 'okay'!

greygoose profile image
greygoose in reply to Tish1660

Exactly! I Don't know if they lie or if they're just ignorant, but it's very rare to find a doctor who will tell you not to take it.

Anyway, let us know when you get your results, and we'll see what we can learn from them. :)

Hello Tish1660,

Welcome and sorry to hear you are not feeling good.

greygoose has already given you a lesson on different thyroid hormones and good advice. Just be sure when advising results to post in a new question and include the ranges (numbers in brackets).

It is important to take your pill on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements.

When having thyroid hormone tests, leave 24 hours between last medication dose and blood draw and try to have the blood draw early in the morning when TSH is highest.

Depending on how long your hypothyroidism has possibly remained undermedicated will determine how quickly your symptoms will improve but be assured that you should start to feel a whole lot better once you are wholly medicated.

Flower007

Tish1660 profile image
Tish1660 in reply to

Thank you Flower007 :)

I now understand why the levothyroxine isn't working properly. I was told to take it half an hour before eating, not 1 hour. I was told nothing about supplements or how hypo affects my body regarding vitamins. I went for a 6 week check when I was first diagnosed and that was when I was given 50mcg instead of 25mcg. He told me to come back in 6 months for another blood check when I would 'probably feel a bit better, though it takes a while for it all to take affect'. When I rang for the appointment, I asked if I should take my tablet before the appointment or afterwards. I was told by the nurse to take it as normal as the meds are accounted for in the test (?) Which I thought was a bit odd, but not knowing anything about it, I just took her word. I really need to get educated on this, as they haven't got a clue!

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