Hi: My friends have basically told me to get on... - Thyroid UK

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Hi

katriona_d2018 profile image
26 Replies

My friends have basically told me to get on with my life even though I feel so awful. Family say I don't look ill even though I feel ill. They suggest I should go to doctor and get antidepressants.

TSH 5.1 (0.2 - 4.2)

TPO 1500 (<34)

FT4 14.2 (12 - 22)

FT3 3.0 (3.1 - 6.8)

Are they right? Thank you

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katriona_d2018 profile image
katriona_d2018
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26 Replies
Anthea55 profile image
Anthea55

No, they are wrong. Your Free T3 is far too low, which will make you very tired. Your TSH is high and your antibodies are high, which means that you have Hashimoto's thyroiditis.

What does your doctor say? Have you been offered treatment?

I love the way you've called them 'fiends' rather than 'friends'!

katriona_d2018 profile image
katriona_d2018 in reply toAnthea55

Oops spelling mistake. I stopped my levo 3 days ago

Angel_of_the_North profile image
Angel_of_the_North in reply tokatriona_d2018

Why?

greygoose profile image
greygoose

Are your friends doctors? If not ignore them. Correction, ignore them anyway. They have no idea what they're talking about.

You are hypo - are you on any thyroid hormone replacement? If not, you should be. If you are, then you need an increase in dose. Your TSH is too high - a euthyroid TSH is around 1. Your FT3 is below range - and it's low T3 that causes symptoms. You cannot 'get on with your life' if you don't have a high enough level of T3 because you won't have the energy to do so. And, low T3 is more than likely going to cause depression. Antidepressants won't help, and could make things worse.

You also have high antibodies, which means you have autoimmune thyroiditis - aka Hashi's - so the problem is not going to go away, or get better by itself, if you ignore it. It's going to get worse. So, take these results to your doctor, and ask him to put you on a starter dose of 50 mcg levo, then get retested in six weeks. :)

katriona_d2018 profile image
katriona_d2018 in reply togreygoose

I stopped my levo 3 days ago, was taking 50mcg diagnosed 2014

Rmichelle profile image
Rmichelle in reply tokatriona_d2018

Why?

katriona_d2018 profile image
katriona_d2018 in reply toRmichelle

Felt ill when on 50mcg levo, was getting nausea and IBS symptoms

Rmichelle profile image
Rmichelle in reply tokatriona_d2018

Others will respond and help you

katriona_d2018 profile image
katriona_d2018 in reply togreygoose

Felt ill when on 50mcg

greygoose profile image
greygoose in reply tokatriona_d2018

Because you were under-medicated, I should imagine. Have you ever been on a higher dose than 50 mcg? In any case, you need to be on something, because your FT3 is below range, and that is dangerous. Nausea and IBS can be hypo symptoms.

Were those labs done when you were on 50 mcg?

katriona_d2018 profile image
katriona_d2018 in reply togreygoose

Hi I was on 75mcg levo initially and endo reduced to 50mcg but I felt so bad 6 days into my dose I had to be off work ill. Sick going up and down in my gullet and throat. I really thought I was going to throw up or my gullet was on fire.

Jazzw profile image
Jazzw in reply tokatriona_d2018

You endo shouldn’t have reduced your dose (probably not an endo but a diabetes specialist out of his/her depth).

You don’t need antidepressants, you need thyroid hormone replacement - and more than 50mcg.

Unfortunately, having stopped your thyroxine it’s likely you’re about to feel worse rather than better. There’s a sort of rebound effect when you abruptly stop taking thyroid hormones that makes it seem intially as though you’re feeling better - your pituitary gland prompts your knackered thyroid to pump out as much as it can. Sadly, a knackered thyroid will soon find that tough to do and then you’ll start to feel poorly again.

Those results show that you do need to take levo, and that you need an increase in dose (and a doctor who isn’t an idiot).

Rmichelle profile image
Rmichelle

What does ill look like?? Ive never undersood why people say that, i have thyroid disease and hashimotos and most days feel poorly, you need support from your family and friends but this isnt always so.

Others who are more experienced will comment and help you soon.

Your tpo is high that indicates hashimotos disease. X😊

shaws profile image
shawsAdministrator in reply toRmichelle

If you take thyroid hormones which don't suit, you feel like hell, painful, stiff body, tight muscles, cannot step onto a pavement or comb your hair- severe palpitations and trips in ambulance at home and abroad and here is a list of symptoms.

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

Anthea55 profile image
Anthea55

Have you tried different brands of levo? What suits one person may not suit another. Chemists have a habit of getting what is cheapest at the time which may mean that you don't get the one that suits you best. Also apparently it's not good to mix brands of levo.

Have you had vitamins and minerals tested? It is essential that these are good as otherwise your levo (T4) won't convert to T3 which is the active hormone.

For your friends and family there are some letters on here which might help them to understand. This is one

healthunlocked.com/thyroidu...

and there are others which you can find if you use the Search Thyroid UK box at the top right of the screen and put in something like 'Letter to family'. Worth a try.

katriona_d2018 profile image
katriona_d2018 in reply toAnthea55

Thanks I have been taking Teva but before that I had no problem with any of the other brands. Endo reluctant to prescribe any other brand. I have anaemia and vit D deficiency, GP wants to talk to me about results

Thanks

greygoose profile image
greygoose in reply tokatriona_d2018

Lots of people have been ill on Teva. It's not the hormone itself, it's the fillers in the tablets. You need to try a different brand. But you'll probably have to insist rather forcefully.

One thing is clear, you cannot go on as you are at the moment, or you're going to make yourself very ill.

Anthea55 profile image
Anthea55 in reply togreygoose

Anaemia and Vit D deficiency make me think of low stomach acid. Have you been treated with a PPI such as Omeprazole? These are prescribed to treat heartburn by lowering your stomach acid. Unfortunately doctors don't seem to realise that many of us already have low stomach acid. Lowering it further can reduce absorption of vitamins and minerals.

Many doctors only know about high stomach acid not low stomach acid. The symptoms may be similar, but the treatment is totally different. I visited an endo who was horrified that I refused to take Omeprazole.

this link may explain it better than I can.

drmyhill.co.uk/wiki/Hypochl...

katriona_d2018 profile image
katriona_d2018 in reply toAnthea55

Hi thanks I only took a PPI for a month but the deficiencies were found 3 years before I was prescribed a PPI

Will look at link now

DeeD123 profile image
DeeD123 in reply tokatriona_d2018

Have a word with your pharmacist and see if they will change the brand for you. Mine did and explained the difference. They are very often more Informed than your doctor

shaws profile image
shawsAdministrator

Always follow your instinct. Why are people, especially relatives, so insensitive and have no idea, or sympathy and they are also ignorant too, of the fact that our body cannot function if our hormones are low.

Your FT4 and FT3 are too low and should be nearer the top of the range. Tell your relatives that if hypothyroid patients are diagnosed as 'depressed' it is because they are not being given a sufficient amount of thyroid hormone replacements.

The aim is a TSH of 1 - yours is above range . TPO informs us that you have an Autoimmune Thyroid Disease commonly called Hashimto's and the antibodies wax and wane and attack your thyroid gland until you are completely hypothyroid. Yours are sky-high.

Levothyroxine is T4 only and has to convert to T3. T3 is the only active thyroid hormone needed in all of our millions of receptor cells and yours is at the bottom of the range.

You are undermedicated.

Because doctors and endocrinologists seem to be unknowledgeable we have to read/learn and ask questions in order to recover our health. We can do.

You need the addition of T3 to your T4.

You feel very unwell because you are undermedicated. Tell GP to give you an increase of 25mcg now and another blood test and 25mcg every six weeks till your TSH is 1.

We, on this forum, have had to learn and know more than most medical professionals and we are mainly well now.

If you were fine on your dose you would have none of the following:

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

Joanneconnor profile image
Joanneconnor

Put in Google 300 thyroid related symptoms and show them!!! 😡

SlowDragon profile image
SlowDragonAdministrator

You can see on this link, many many people have had trouble tolerating Teva

healthunlocked.com/search/t...

Endo's think that because its the only lactose free Levo it must suit all of us, it doesn't

Ask you GP to prescribe a different brand - there's Wochart, Activs or Mercury Pharma to try

Lots of us can only tolerate one or two brands.

It is however, essential to get back on a starter dose of Levo.

Initially when you stop taking it, you can temporarily feel better, but it does not last. We can be very unwell without this essential replacement hormone.

If you have only ever been on 50mcg its not surprising you feel unwell. That's a starter dose, that needed increasing, in 25 mcg steps (retesting each time 6-8 weeks after a dose increase) until TSH around one and FT4 at top of range

Your other post on your low iron levels. Low vitamins are a result of the Hashimoto's, but you will need to supplement to improve for the moment

Low Vitamin D too is extremely common. We need to correct the low vitamins with supplements while getting started on Levothyroxine and the Levo dose has to increase up slowly.

Your endo putting you on 75mcg was too much too quickly.

When we have low vitamins we can be much more hypo than they realise. Its necessary to start dose low, usually at 50mcg, but sometimes even lower than that.

It takes a full 6 weeks for a dose to get into our system and balanced. There's no point retesting until after 6 weeks

Having Hashimoto's entitles patients to free prescriptions, because its a serious illness.

Levo is not a medication, but an essential replacement hormone

Read as much as you can, learn as much as you can. You will see you are far from alone in having your illness poorly managed by medics. We get many many posts each day with similar stories. which is why we are campaigning hard to get new improved guidelines for better treatment. (There are over 2 million people, 90% women, on Levo in UK)

Getting vitamins improved, find a levothyroxine that doesn't cause so many bad reactions and for very many of us trying gluten free helps with healing the gut. Sometimes gluten free only for a while, its certainly worth trying. Especially now Christmas is over

It is a difficult illness for friends or family to understand, because its completely invisible. That's one reason this forum is so popular. People on here understand very well how really dreadful you can feel....while looking perfectly "normal"

SlowDragon profile image
SlowDragonAdministrator

Ask GP to test you for coeliac disease. The blood test is unreliable, but worth doing before changing to strictly gluten free diet

Also ask that GP test B12 and folate. These are also often low when under medicated

With friends like that ...

They are now qualified doctors are they? You don't need antidepressants (which will make you worse), you need new friends and enough medication for thyroid to raise your free T3 into the top quarter of the range. The brain needs more T3 than any other organ and one of the main symptoms of low T3 is what we call "depression" but what we need is enough T3 not a happy pill which won't cure the problem but just make us not care how awful we feel..

shaws profile image
shawsAdministrator

Maybe print out the following and give to your friends/family. Maybe they are also unaware that hypothyroidism is a fatal disease if untreated and that if we are diagnosed with hypo, we do not pay for any other prescriptions, for any other problems we may have.

verywell.com/when-your-fami...

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