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Thyroid UK
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Very confused.. need help

Just a bit of background about me first.. I'm 21 male and have been suffering from hypothyroidism for about 2 and a half years now. Out of those 2 and a half years a year and half I went untreated, as the GP said I was just suffering from depression. At the time I was told I was borderline hypothyroid but I shouldn't be feeling this bad so they just passed me off as I was depressed. I'm a very sporty outgoing person but this has just completely killed me off, zero energy, weight gain(use to be very lean as I'm into weightlifting, now very fat), coldness, brain fog, joint pain, etc etc.. all the hypothyroidism signs.

Now this is where I'm confused at; basically, I've been on t4 nearly a year now and I haven't improved at all, if anything gotten worse. Cannot even work now, been out of work a year, barely seeing friends.. everything is just miserable.

I'm on 75mcg of levothyroxine(quite small dosage) and my tsh is 0.26 and t4 26. So my tag is slightly under the range and t4 slightly over, basically saying I'm slightly hyperthyroid. However, my t3 did not get tested recently.

This is what I'm confused about, I had suspicion I was having conversion problems.. however when I was on 50mcg thyroxine my t3 was tested (the only time is has been tested) and that came back around 5.8.. so quite in the high range. This was around 6/7 months ago.. so that could have changed.. did ask for my t3 to be tested again but the gp didn't bother.

Sorry for the long winded post, I'm just a bit all over the place and very confused about it all. Just feels like there's never going to be an end of me feeling rubbish and I'm going to just have to deal feeling like this for the rest of my life.

24 Replies
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Do you have Hashimotos ?

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Hi Marz,

I had the antibody test when I was first diagnosed and the result came back that I didn't have hashmitos. That's the only time I've been tested for it however.

Do you think that could have changed over the year?

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Do you have copies of your results so you can check the tests done ? - they are legally yours 😊

Have you had B12 - Folate - Ferritin - VitD - ? If low they can make you very unwell.

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I don't no unfortunately.. however I have had vitamin D and b12 tested and they were all okay.. don't think I've had folate and ferritin tested however so I will have to ask for them to be tested also.

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This is why you should always have results with ranges for your OWN records. It also helps with posting here if you can give more information .....

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"there's never going to be an end of me feeling rubbish and I'm going to just have to deal feeling like this for the rest of my life." Lots of us know what that feels like so you have my sympathies.

It's too bad your GP didn't test your FT3 this time but you'll probably find if you want it done you'll have to get TSH, FT4 and FT3 tested via an online lab like Medichecks or Blue Horizon. You will find these listed on Thyroid UK website as reliable labs. It's possible your FT3 was high as a result of antibodies activity if you have autoimmune thyroid disease which causes approx 90% of hypothyroidism.

Has your doctor tested TPO and TgAb antibodies and if so, were your antibodies elevated? It's very likely you have low vitamin levels due to hypothyroidism if you've hadd them tessted then post the results here for good advice, if not, get them done, B12, folate, ferritin and Vitamin D are the critical ones. Many of us have found we have to optimise vitamin levels for thyroid hormone to function well and for us to feel well again.

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Thanks for your kind words.

I have had the auto immune test done and it came back that I didn't have hashmito's.. however that was only tested when I was first diagnosed around a year ago.. so could that have changed? I have had vit d and b12 tested and they both came back okay.. I just feel so stuck right now, just want this all to end and to feel myself again.

I'm 21 and I feel like an 80 year old.. just horrible.

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When you say vitamin D and B12 were ok, what were the actual results? We often find doctors say results are fine when they are really only bumping along the bottom of the range and that will not make us feel well. What about folate and ferritin too?

You could take 1000mg vitamin C daily to support adrenal function and take some magnesium which we are often low in. They are not stored in your body so you will excrete any excess but both are needed for good bodily function. Not a miracle cure but you can start to help yourself and these don't need testing.

Magnesium

naturalnews.com/046401_magn...

If you want to post your antibodies results here we can confirm for you whether they are elevated or not. It may be worth testing again if they were quite high as they can fluctuate if you have autoimmune disease. Also, NHS usually only tests TPO and you can have elevated TgAb which you would need to test through online lab if NHS won't do.

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I'm not quite sure what the results were, I will have to go to the GP and get them to print everything off. I didn't have folate and ferritin tested.

Okay I will have to start taking the vitamin c and magnesium then.

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Well, it'll do no harm to try the vitamin C and magnesium. It can take a few months to notice a difference. Get the best quality vitamins you can afford. The internet is a good source.

Advice from people on this forum is to always get and keep copies of results and don't rely on GP. We have to take some control and responsibility for our own condition. Dr's mostly don't have the time or interest to help us.

If you live in England you can register for online blood test results. You ask your GP reception to give you a form to complete, after which they will give you a password and then you log in to an online portal and can access your blood test results. Remember to ask reception for enhanced access to blood test results. You may need to take ID or GP may have to sign the form.

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Could I just ask as well, what levothyroxine are you taking and do you always take the same variety? Not all levothyroxines suit everyone and some people do not find them interchangeable although they are supposed to be.

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I was on uni pharma when on 50mcg but then changed to teva when on 75.. felt rubbish on both.

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What was in the Uni Pharma levothyroxine was it Mercury Pharma? Changing from one type to another can make some people feel unwell but perhaps neither of these suit you? Why don't you try either Wockhardt or Actavis which are the other two types of levothyrxoine available in the UK. Only Actavis suits me.

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Yeah mercury pharma, that's the one. I've gone onto t3 only now, endo agreed to try me on it see if there's any difference. Just hope it makes me feel better..

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Do you have a private Endo? Many on here have had T3 withdrawn so you are very lucky.

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No I've seen one on the NHS.. taken so long to see one it's ridiculous. I bought t3 online, that being one reason as I've read people's t3 are being withdrawn from them which is utterly ridiculous.

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You might find if your vitamin levels are low that T3 isn't ulitilised effectively by your body either. This is why it's important to get vitamin levels to a good place. The Endo and GP are unlikely to know how important this is. They neither study nutrition or thyroid to any extent. Google your Endo, most likely a diabetic specialist unless you specifically chose one that was a thyroid specialist or got lucky.

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Okay, I'll have to book in with the gp to get those vitamin levels tested then. Yeah my endo is pretty much a diabetes specialist lol. Seems very common that most endo's don't exactly know a great deal about thyroid.. however he did recognise the absurdity with t3 being withdrawn from patients who need it.. and couldn't believe the amount it is costing the NHS. Personally I think the NHS is a disgrace, everyone would be much better off paying lower taxes and being able to have private medical insurance.. much better and most importantly quicker care.. plus you get to choose which doctor you get to see. I hope one day I get out of this country and move over to the US.

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We see posts on forums from people in US who have lost their jobs as a result of ill health and then don't have the money to pay for their thyroid meds. Heavens knows what happens to them in the end so be thankful for the NHS. We get free prescriptions for thyroid disease. If you have no money in the US you get no choice, no doctor.

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For full evaluation you really need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

You are taking very small dose for a young male.

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available. Loads of us use this

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 be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

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Yeah I did think that I'm taking a really small dosage with me being male and also young too.. usually requires more. I seen that the optimal dosage is 1.7mcg per kg.. I'm 14 stone 10, my lean weight is around 12.5/13 stone so that should mean I'd need about 150mcg of thyroxine?

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Strongly suggest you get full testing privately if necessary

Good levels of vitamins are essential especially on T3

Plus if you have Hashimotos strictly gluten free diet likely essential too

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Welcome to our forum and you must realise that the medical professionals are not the people to help you recover or feel much better with hypothyroidism. So you have come to the right forum as all of us on it have had similar to yourself.

First, you have to read, learn and ask questions and members will respond. I am not medically qualified as is the majority on here - it has been trial and effort which has enabled us to recover.

Next I shall give you a list of clinical symptoms. Tick off the ones you have - your GP wont know any at all as all the medical profession think it is just a figure and a result on a piece of paper that tells them what to do next. Not so.

thyroiduk.org.uk/tuk/about_...

We have to have our blood tests at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take it afterwards.

Always teke levothyroxine first thing with one full glass of water (tablet can stick in throat) and wait an hour before eating. Food interferes with the uptake of levo.

thyroiduk.org.uk/tuk/about_...

Because hypothyroidism slows our body down, we don't have the energy we used to have as it runs our whole metabolism. We have billions of T3 receptor cells in our bodies, each one needs daily T3 in order for us to function and our heart/brain contains the most.

Levothyroxine is T4 only. It has to convert to T3. We have to have a sufficient dose in order to convert to T3.

When we exercise if hypo before we are on an optimum of thyroid hormones, we deplete the T3 in our receptor cells.

Ask GP to give you a Full Thyroid Function Test which is TSH, T4, T3, Free T4, Free T3 and thyroid antibodies if you've not had antibodies tested. He probably wont as they've been told TSH and T4 is sufficient bu not if we have symptoms. He or lab may not but you can get those not tested through one of our private labs and they are pinprick home tests.

He should definitely test B12, Vit D, iron, ferritin and folate as everything has to be optimum

Post your results with the ranges on a new post for comments.

We can get well but we have to know how to do so as it is a slow procedure and few doctors are knowledgeable/helpful.

Always get a print-out of your results with the ranges. Some charge a nominal sum for paper/ink. Mine charges 30p a sheet.

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Hi shaws, thank you very much for this information and advice. I have switched from t4 into t3 as I told my endo I've bought some online and he agreed to try me on t3 only so I'm just waiting to see if I feel better on that.. just a big waiting game at the minute.

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