Side Effects Advice : Hello I hope someone will... - Thyroid UK

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Side Effects Advice

Caravan18
Caravan18

Hello I hope someone will be able to advise me. I have had a under active thyriod for nearly 20 years, I have been using Mercury Pharma 50mg for most of that time but on one occasion a few years ago I was given a different make and I had an allergic reaction.

A few months ago I took the first of my new packet of mp and I felt awful, heavy arms, tight breathing, shaking and stomach problems.

I spoke to my doctor and we decided to try a different batch of mp and the next 2 months were absolutely fine but when I got the next batch it happened again.

I have now been on Actavis and it is the same, I feel awful my body trembles and my stomach burns. I not sure what to do now, any advice. Thank you.

13 Replies
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SlowDragon
SlowDragonAdministrator

Ask your GP for trial of liquid Levothyroxine. It's more expensive, so they don't like to suggest it as an option

Are you only on 50mcg Levothyroxine a day?

This may be the problem. Most people need higher dose than this

50mcg is only a starter dose

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...

It's common for conversion to get worse with age/or over time

Extremely important to test vitamin D, folate, ferritin and B12 too, these are very often too low

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

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 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_...

Always get actual results and ranges on all your blood tests

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when on just Levothyroxine to be adequately treated

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

Thank you for your advice. I have been on 50mg for 20 years. I have my blood tests and they have always been fine.

I will go back to the doctor because I can't cope with how awful I feel. Thankyou.

shaws
shawsAdministrator

I am sorry you are struggling. I agree with SlowDragon that your dose is very small, i.e. 50mcg is a starting dose and increases of 25mcg every six weeks should be prescribed until you are symptom free. TSH usually about 1. Unfortunately many GPs/doctors believe that if the TSH reaches 'within range' - even up to 5 that we don't need increases.

Tick off your clinical symptoms - the aim is to relieve all clinical symptoms and TSH of 1 or lower with a Free T4 and Free T3 in the upper part of the ranges but the latter two are rarely tested.

Some of us do get reactions to different fillers/binders in levo which can be changed without notice.

I hope you feel better soon. I have read that if we think we've had/have a 'reaction' to levo we should take an anti-histamine tablet 1 hour before dose and if you don't have a reaction, you are sensitive to the tablet fillers/binders and ask for another make.

Caravan18
Caravan18
in reply to shaws

Thank you for your advice, this really helps me. I have had reactions to other medications in the past, my doctor has said that he thinks that it might be the fillers.

I will ask about blood tests, I was quite poorly 5years ago and had lots of tests and blood tests. This is when my allergies started.

Thank you.

SlowDragon
SlowDragonAdministrator
in reply to Caravan18

It's unlikely GP can do all the required tests, but see what tests they will do

Getting the rest privately

There are over 90,000 members on here, because current understanding and Treatment of hypothyroidism by GP's is so poor

If under medicated , vitamin levels very often drop and then TSH drops. So just test TSH is inadequate

It's essential to test them ALL

shaws
shawsAdministrator
in reply to Caravan18

If you think the medication is causing you symptoms, you can take one anti-histamine tablet one hour before the dose and if you feel an improvement, ask pharmacist what other can he provide - probably another manufacturer.

Caravan18
Caravan18
in reply to shaws

Hello thank you for your advice,

It's such a shame because I have been feeling so well lately.

What I don't understand is that when I swapped my medication I felt fine for the two months I was taking it.

Also I feel bad after taking the meds, mostly stomach burning and bloating.

I will go to the doctors for blood tests .

Thank you.

shaws
shawsAdministrator
in reply to Caravan18

These are the symptoms:-

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

Caravan18
Caravan18
in reply to shaws

For the last five years my life has been full of these sort of problems, I have found it really hard to deal with. I have been to my doctor many times and have had lots of blood tests, my doctor has always said my thyroid levels are fine.

Imagine if this is the reason I have been so Ill.

Thank you.

shaws
shawsAdministrator
in reply to Caravan18

I understand completely as not one medical person diagnosed me or even thought of hypothyroidism. We do rely on doctors to know more than us and despite hypothyroidism being so common they appear to not know one clinical symptom and only go by the TSH and never test the Frees, (T4 and T3) or test at all when patient attends the surgery. Myself, I had to diagnose and at that time - being bedridden by now - TSH was 100.

They should return to symptoms, symptoms, symptoms and forget about the TSH - the UK seems the most barbaric as they state we should not be diagnosed until it reaches 10, whilst in other countries people are diagnosed if TSH goes about 3 with clinical symptoms.

Caravan18
Caravan18
in reply to shaws

Hello I had to see the nurse at my doctors surgery who prescribed me with a different brand of thyroxine due to the fact I felt so Ill everytime I take it. I take the pill and feel awful but by the afternoon I start to feel better.

Nothing changed on the new brand and I ended up, trembling, very hot, red and a headache.

Before giving me the new brand the nurse suggested that maybe I should stop taking them.

I went back to my doctors today and he also told me to stop taking them. This does worry me as I have been taking it for 20 years.

What is the alternative though if I am having bad reactions to them all.

The doctor said my blood tests have always been good on 50 so I may be ok.

Here I go then.

shaws
shawsAdministrator
in reply to Caravan18

I doubt anyone could survive on 50mcg of levothyroxine, 50mcg is a 'starting dose' except if the medical professionals assume that if your TSH is 'within' the range, i.e. up to 5 that you're on a sufficient dose unless you are very frail with a heart disease (confirmed heart disease).

If you've been diagnosed as hypothyroid, we cannot stop taking thyroid hormones whatsoever. We don't suddenly become someone who is no longer hypothryoid.

The first thing to do is request a Full Thyroid Function Test. All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take it afterwards.

Request, TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Antibodies are important as they distinguish between hypothyroidism and an Autoimmune Thyroid Disease called 'hashimoto's due to having antibodies.

It is a learning curve for us, the patients, due to doctors and endocrinologists not seeming to understand what hypothyoidism really is and that without sufficient T3 we will feel unwell. Our body needs T3 in order for us to function normally (converted from T4 or T3 added to T4 or T3 alone - except they will no longer prescribe T3 due to the increase in price but we can source it ourselves).

Don't be afraid to ask the GP and as has been suggeted above get a Full Thyroid Function Test (GP wont do all but the ones he wont do you ca get privately).

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

You take levothyroxine with one full glass of water on an empty stomach and don't eat for one hour. This allows the hormone to be absorbed as eating will reduce this effect and coffee also is not recommended till about 2 hours after taking levo.

Some people prefer taking levo at bedtime. If you decide to do this method, allow a gap of 3 hours between your last food and levo and take with one full glass of water. If having a blood test next day, miss night dose and take after test and your night dose as usual. Some people take a whole week's levo in one dose but I have never done that.

You can get better but it can be trial and error and doctors have no know or extremely little knowledge except to look at the TSH.

I shall give you a link re 'private blood tests. These are home-tests and - following the advice above - make sure your arms hands are warm so that blood draw is easier. They are fasting etc and get a Full Thyroid Function Test - we need the result and the ranges which you can put on a brand new post so you get more comments.

GP has to test your B12, Vit D, iron, ferritin and folate. Everything has to be optimal.

Caravan18
Caravan18
in reply to shaws

I went in to talk about blood tests but both the nurse and doctor told me to come of the medication.

I had no symtoms before starting levothyroxine and was border line. I have had 3 babies and a hysterectomy and seen many doctors and they have never been concerned about my level.

It has been checked many times because of anemia.

I am worried about just stopping though.

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