Hypothyroidism

[Kay82]

So I was diagnosed with hypothyroidism after giving birth nearly 9 months now started medication in November levothyroxine first I was given activis I felt awful on them so stopped over Christmas till next bloods then was still under active so doc suggested I started on them again, so this time I was given mucurypharma I feel better on these I think only thing I’ve found I’ve drank alcohol twice since taking the tablets and have got blank spots from the night like where nothing even triggers your memory I’ve never had this, and also keep getting the sensation or something in my throat like food stuck even tho it’s not has anyone else experienced any of these .... ? Thanks

[SlowDragon Administrator]

Presumably you were restarted on 50mcg levothyroxine?

50mcg is only the starting dose.

Common to have a “lump in throat” sensation until dose is slowly increased

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

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and thyroid antibodies if not been tested

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose 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

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

For thyroid including antibodies and vitamins

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 you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

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 primary 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 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_...

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

[Kay82 in reply to SlowDragon]

Thanks a lot of information there I feel like I’m never away from the doctors but I’m not getting anywhere, would you know how much about it would to be have the test private, I’m struggling with a young baby got no time to be ill I’m relying on caffeine to get me through the day it’s so hard to function, I’m so fed up at the min really don’t want to go back to the doctors feel like I’m some kind of hypochondriac feel like throwing the towel in on everything it’s so draining .

[Kay82 in reply to SlowDragon]

Sorry read it wrong I’ve clicked on the links for the test thanks an yes I’m on 50mg this feeling last long it’s making me feel sick

[Lora7again in reply to Kay82]

That is just a starter dose, for example my Dad who is 78 is on 100mcg and that is because he classed as elderly. You definitely need an increase ... don't let your Doctor fob you off they are keeping you ill imho.

[Kay82 in reply to Lora7again]

It’s awful like no one is really bothered, my mood has gone so low too I mentioned that at last appointment she said come back see me in 8 weeks, they actually said my times up when I was describing all my symptoms to them that I’d have to make another appointment to discus anything more I don’t want to go back now they made me feel like I’m going mad or something because it’s affecting my health so much but they don’t really give a damn told me my appointment was up never has that happened before made me feel embarrassed

[Lora7again in reply to Kay82]

Can you change Doctors?

[Kay82 in reply to Lora7again]

Probably but not sure how long it would take or a better doctors is

[Lora7again in reply to Kay82]

Well your Doctor is clearly not helping you so it might be worth trying a different one.

[Kay82 in reply to Lora7again]

Are you not supposed to be sent to a clinic for thyroid or do they not do that because I’m uneducated in it I’m not sure on the process

[Lora7again in reply to Kay82]

You can be asked to be referred to a Endocrinologist who specializes in thyroid disease. Can you pay to see one privately so you don't have to wait?

[Kay82 in reply to Lora7again]

Think I might look into getting some private bloods taken see what’s actually going on thanks for replying

[Wetsuiter in reply to Kay82]

That s bloody awful

[SlowDragon Administrator in reply to Kay82]

There is no point testing blood until been on dose of levothyroxine for 6-8 weeks

How long have you been back on 50mcg levothyroxine?

Have you been given blood test form for getting blood test?

While waiting for 6-8 week test ...

First step is to get copies of your previous blood tests....see exactly what has been tested and equally important what hasn’t been tested yet

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

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone 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.

Come back with new post once you get your results

If vitamin D, folate, B12 and ferritin haven’t been tested yet, or thyroid antibodies request they are tested .....either now...or at same time as Thyroid blood test

Important to do blood test for thyroid as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

[Kay82 in reply to SlowDragon]

How does it effect your result I’ve never been told this off doctors sure I’ve drank and ate before tests. Every time I ask for results they never give me a straight answer I asked to be tested for auto immune test but still unsure if they ever did one, I’ve asked countless times for advice on anything that can make it better but they said there’s nothing, feel like I’m banging my head off the wall last time I went I was describing all my symptoms and they actually said I will have to come back as my time is up, it’s awful to live with when you don’t know what’s what or if it’s ever going to get better, my mood has gone so low too lately even tho I’m on antidepressants I asked about that she said make an appointment for 8 weeks, I think to be fair none of the doctors I’ve seen have any knowledge of thyroid conditions

[SlowDragon Administrator in reply to Kay82]

Your experience is extremely similar to thousands of other thyroid patients

Hence over 105,000 members on here

TSH has a distinct daily variation, highest very early morning.

ncbi.nlm.nih.gov/pubmed/258...

TSH Drops after eating or drinking

ncbi.nlm.nih.gov/pubmed/252...

The advice to get tested early morning before eating or drinking anything other than water is a patient to patient tip

NHS Guidelines do say testing should be morning before taking levothyroxine

New guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

[vocalEK in reply to SlowDragon]

The last link takes to guidance for liothyronine. Do you have a link to the document for prescribing levothyroxine?

[SlowDragon Administrator in reply to vocalEK]

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

NICE guidelines

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

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

[vocalEK in reply to SlowDragon]

They don't like me:

CKS is only available in the UK

The NICE Clinical Knowledge Summaries (CKS) site is only available to users in the UK, Crown Dependencies and British Overseas Territories.

CKS content is produced by Clarity Informatics Limited. It is available to users outside the UK via subscription from the Prodigy website.

Logo for Clarity Consulting

Can I help it if my 7th or 8th (not sure how many) great grandfather decided to leave Ireland in the 1700s and emigrate to the Colonies?

This is what I was wanting to find: "New guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine"

[helvella Administrator Thyroid UK in reply to vocalEK]

Which is not in the CKS! They were updated in 2018.

The NICE guidelines produced last year (2019) are freely available here:

ncbi.nlm.nih.gov/books/NBK5...

[vocalEK in reply to helvella]

Thank you!

[vocalEK in reply to vocalEK]

I could not find the information.

I did find this: "Hypothyroidism

No evidence was available on the optimum timing or intensity of monitoring. One study was available comparing different TSH targets. This evidence was low to very low quality due to risk of bias and imprecision."

Do I have the right document? It is displayed in a web page format, so there are no page numbers.

[MichelleHarris]

Linzr is going through this too.

Sorry does anyone know how to highlight Linzr’s name so she is notified of this?

[SlowDragon Administrator in reply to MichelleHarris]

You add an @ before name ...and then pick from drop down menu that appears at bottom of your reply

Here

Linzr

[MichelleHarris in reply to SlowDragon]

Thank you x

[Linzr in reply to MichelleHarris]

Thanks michelle x

[Linzr in reply to Linzr]

I fully believe that the cause of my throat sensations/lump/clearing throat is down to the levo brand teva. Its about 70% better since i stopped it.

[MichelleHarris in reply to Linzr]

I think its all of them for me, as I wasn’t on Teva when it started. It was worse on Actavis and Tyromel (T3) for me. Its still sore on NDT. Consultant says its Thyroiditis x