Diagnosed low thyroid but still feeling grim - Thyroid UK

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Diagnosed low thyroid but still feeling grim

Hi there - I have a TSH over 100 - identified in October of this year. And even then, only by accident. It was the lab technician who processed the blood test who called me at 10 pm telling me to go straight to hospital for immediate treatment. Swollen eyes and tongue, along with lower leg weakness pointed to myxedemic crisis but I have still only seen a nurse practitioner who prescribed 75 mcg of Levothyroxine. I still feel rubbish - but too tired to jump through the hoops required to get a doctor's appointment. Should I be on a higher dose? Who should I see?

I don't know any other details about the blood test.

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sparra21

Should I be on a higher dose?

Very likely. You were started on a decent dose and now it's time to titrate this. After diagnosis and starting Levo, retesting should be done every 6 weeks, with an increase in dose of 25mcg if necessary, and repeated every 6 weeks, until symptoms abate and your levels are where they are needed 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 if that is where you feel well.

So you need to make an appointment for retesting now.

Who should I see?

That depends on how it works at your surgery. If the nurse practioner instigated the prescription originally, and they have the authority to increase your dose, maybe it's fine for you to continue seeing that person, if not then you need to see a GP.

When booking thyroid tests, always book the very first appointment of the morning and fast overnight (water allowed), this means have your evening meal/supper the night before then delay breakfast until after the blood draw, drink only water, no coffee, tea, etc, before the test. This gives the highest possible TSH which is needed when looking for a diagnosis, an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It can also lower after eating and coffee also affects TSH. Also, take your Levo after the blood draw because if you take it before then your FT4 will reflect this and show higher than what is normally circulating. We usually advise 24 hours between last dose of Levo and blood draw so if you take your Levo in the morning then delay until after the test, or if you take it at night then delay that dose until after the test. These are patient to patient tips which we don't discuss with doctors or phlebotomists.

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.

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Much appreciated. I have another blood test scheduled for Monday so that is good advice. I will only be seeing a nurse however, which is why I asked the question. I shall also ask for full results this time. The last nurse I saw did not prescribe, just passed a prescription from on high which included blood pressure meds and statins. Something in that mix made me feel worse than ever and I was told to drop the statins (telephone call). I've actually dropped both the amlopodine and the avorastatin and bought a blood pressure cuff instead, as both leaflets recommended against use for hypothyroidism and contraindicated each other.

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Statins - I'd beware. That's because when we're undiagnosed hypothyroidism - cholesterol is one of the clinical symptom which reduces as our thyroid hormones are increased. I doubt doctors seem to know any clinical symptoms. This is a list:-

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

They are very smart to prescribe for symptoms but not gradually increase our dose of levothyroxine until TSH is 1 or lower.

Also ask for B12, Vit D, iron, ferritin and folate to be checked. Everything has to be optimum.

Guidelines for blood tests:-

Always at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take it afterwards. This keeps the TSH at its highest as it drops throughout the day and we don't want dose adjusted.

I also was diagnosed when TSH was 100 so know full well how awful we feel.

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Well something was making me feel ghastly. I feel like the levothyroxine runs out too - and have occasionally taken two in the day to keep going

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Try not to do this.....taking occasional extra dose....or when you come to get new bloods test, it may then not show you need dose increase

We have to have bloods done on constant dose

You are very likely ready for dose increase

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Frankly, that is not going to help. You will only feel the benefits of that extra dose six weeks later, because that's the time it takes your body to process levo. But, as SlowDragon says, it could skew your blood tests, making your FT4 look higher than it actually is.

Levo doesn't 'run out', it is a storage hormone, that is stored in your body until it is converted into T3. The feelings you are experience is probably due to the fact that you are still on a low dose. But, all hormones need to be started low, and increased slowly, so as not to stress your body. There are no short cuts, I'm afraid. And trying to speed things up will just land you back where you started, so not worth it, in the long-run. :)

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sparra21 and greygoose I disagree that it takes 6 weeks to feel a levothyroxine increase. The liver is a major site for T4 to T3 conversion. And so it makes sense that when it is processing a T4 dose from the gut that it also converts some of that T4 dose to T3 during the initial absorption. So sparra21 you could feel an extra dose of T4 if you are sensitive to an increase in T3, I know I do.

ncbi.nlm.nih.gov/pmc/articl...

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The levothyroxine was a magic bullet for me. Tongue and face reduced swelling in 24 hours. Likewise fatigue in lower limbs and hands. But it seems to last about 20 hours then it all starts again. Taking a double dose prevents that. But I’m monitoring blood pressure at the same time. Have been reprimanded by daughter (a nurse) and have blood test tomorrow. Feel much better prepared with questions and queries now - thanks to all of you

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Firstly, here are the NICE guidelines to GPs, on treating overt hypothyroidism in non-pregnant women, so you know what your GP is actually advised to be doing.

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

Once diagnosed and treatment initiated, you should have 3-4 wkly blood tests and your levothyroxine adjusted upwards until your results are optimal for you and your symptoms have abated. (In practise 6 wkly testing works better, giving your body time to adjust but if I'm reading your post correctly, it sounds like you haven't had any re-testing & dose adjustment at all, so your GP practise should at least be following the NICE guidelines if they believe their skills to be lacking). If I had your initial TSH and symptoms, speaking for myself, I would want to be managed by my GP as a minimum and by referral to an Endocrinologist for preference. Although neither is any guarantee of good practise and right thinking of course, and that is why it is important to always have copies of all test results and their ranges, so that you can be properly informed and in charge of your health.

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This is very helpful too - thank you. It took a year of feeling truly rubbish to realise what was going on. Knowing how it should be treated is very handy.

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I experienced Myxedema Crisis a few months ago and ended up bedridden afterwards...but it wasn’t my thyroid causing being bedridden as all the doctors thought! My thyroid issues caused me to be unable to absorb B12 in my stomach. I have Pernicious Anemia.

Have you had your B12 tested?

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I don’t know. The TSH was the ONLY thing I was told. I’ll be more inquisitive this time.

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You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

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You need to see GP for full testing and highly likely a 25mcg dose increase in Levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's very important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

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

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

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...

Good to hear you didn't take statins. Nurse was very poorly informed to give you these. Underlines why this should not be managed by only a nurse

nhs.uk/conditions/statins/c...

Bloods should be retested 6-8 weeks after each dose increase

Dose increases until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Essential to test vitamins and likely need to supplement to improve. GP should prescribe if very low

Come back with new post once you have new results and ranges

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Wise words! I’m on it!

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