Under active thyroid : Hi all I have under... - Thyroid UK

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Under active thyroid

Stokelad profile image
32 Replies

Hi all I have under active thyroid now for

years never really understood what or how important you thyroid was .I just took my tablets and got on with it really. But I am having alot of health issues. E.g not sleeping at all. forgetting things .slow movements. depression. aching limbs .and many more things. My doctor keep saying that my bloods have come back ok . So my question is .Can you still get symptoms if your bloods has come back ok. Thank you

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Stokelad profile image
Stokelad
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32 Replies
Lalatoot profile image
Lalatoot

Yes.Ok in Dr speak means in the normal range.

However for us hypos that is meaningless. We have to be optimal, that is at the best place for us in the normal range.

It is like shoes. Normal range for men is 7 to 13. You wouldn't want to be wearing a size 8 if you were a size 11. Yet for the doctor these are fine cos it's a normal size.

You need to get a print out of your results and put them on here for us to help

Stokelad profile image
Stokelad in reply to Lalatoot

So when I go the doctors on Tue. I can ask for my full blood test results

Lalatoot profile image
Lalatoot in reply to Stokelad

Yes you are legally entitled to them . Ask for a print out. You need your actual results and the ranges which are the figures in brackets after your result

greygoose profile image
greygoose in reply to Stokelad

Ask the receptionist, NOT the doctors. Doctors would prefer you didn't know and didn't understand, so that you can't argue with them.

shaws profile image
shawsAdministrator

Welcome to our forum Stokelad and you will get some good help/advices to assist you. You state you were diagnosed years ago.

Don't worry too much about not knowing enough about hypothyroidism but the many doctors I consulted knew nothing at all about symptoms or how to diagnose a patient without the need for blood tests as all of our 'old school" doctors were trained and who could diagnose a patient just through their clinical symptoms.

Ask your GP to for a Full Thyroid Thyroid Function Test - if he wont agree you can get a 'home' blood test from one of the recommended labs. Make sure you are well-hydrated a few days before (water).

The following is how best to get optimum results:-

1. Make the earliest appointment for an a.m. blood draw. It is a fasting test (you can drink water). Even if you have to make it weeks ahead.

2, Don't take thyroid hormones before blood draw and take them afterwards.

3. Fasting (you can drink water).

4. If already prescribed thyroid hormones don't take them before the blood test - but afterwards.

5, Request, B12, Vit D, iron, ferritin and folate to be checked too.

Always get a print-out of your results, with the ranges. Ranges are very important because different places use different machines and ranges may differ. The ranges also enable members to respond.

There are two main thyroid hormones, one is named T3 (or liothyronine - the active thyroid hormone needed in our millions of T3 receptor cells.

The other is T4 or levothyroxine. T4 is an inactive hormone and has to convert to T3.

thyroiduk.org/help-and-supp...

Stokelad profile image
Stokelad

Thank you all so much for you help .Just one other thing .I am struggling to sleep really badly and struggle to concentrate. And alot of time have the same thing going through my head e.g. songs . Could this have something do with my thyroid

Anthea55 profile image
Anthea55 in reply to Stokelad

A tune that gets stuck on your mind is called an 'earworm'. There are a few other tunes which are known to stop the earworm but don't become one themselves. Hope that makes sense. Google for earworm and you may find it.

Stokelad profile image
Stokelad in reply to Anthea55

Yes i have looked that up . But i was wondering is it because I struggle to concentrate and not sleep .Could it be my thyroid. Thank you 🤔

greygoose profile image
greygoose in reply to Stokelad

I rather doubt it. :) I think everyone gets that, hypo or not.

MaggieSylvie profile image
MaggieSylvie in reply to Stokelad

We all get earworms (nothing to do with thyroid) - especially musicians! You can replace that TV jingle with something better - whatever your taste is.

JAmanda profile image
JAmanda in reply to Stokelad

I say yes! I barely slept til I was properly medicated. Also low vitamins can cause poor sleep.

HeartWoman profile image
HeartWoman in reply to Stokelad

I get those you, but is more annoying is I have 3-4 numbers that cycle in my brain over and over. It all seemed to start when I was originally diagnosed with hypothyroidism. It stopped for a while, but then I was left untreated and I have it again. I am hoping once my levels are optimal, it goes away. It is worse in the morning when I wake up. I am waiting for results for cortisol levels, so wondering if it is related to that.

Stokelad profile image
Stokelad in reply to HeartWoman

Thank you . I wondering if I am suffering with it because I feel down

Starling87 profile image
Starling87 in reply to Stokelad

I'm not sure the song thing specifically is thyroid, but I do know that the thyroid can affect anxiety, depression and stress which can have a huge impact on your sleep and concentration..

I hope things get better for you, not being able to sleep is awful.

SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Many people find different brands are not interchangeable

Do you take levothyroxine waking or bedtime

Are you aware levothyroxine must be taken on empty stomach and then nothing apart from water for at least an hour

No other medications or supplements within 2 hours minimum, some like iron not within 4 hours

Are you taking any other medications or vitamin supplements?

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

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 and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Come back with new post once you get results

Members can advise on next steps

Stokelad profile image
Stokelad in reply to SlowDragon

Ok thank you . But yes I am on 150mgs and I do take other tablets for my high blood pressure and for my cholesterol and for my heart attack I had

JagersMum profile image
JagersMum in reply to Stokelad

It might be worth having a conversation with your pharmacist. Some of the other medication you are on can make you feel tired. Statins for cholesterol for instance have a wide range of side effects.

It's horrible to feel how you feel and that's the issue at the centre of your post here, good luck with your search for answers.

Lulu2607 profile image
Lulu2607 in reply to JagersMum

Hi Jagersmum. I agree a chat with a good pharmacist can be very helpful. The clinical pharmacist at my surgery (ie not based in a chemist but employed by the Drs) is very good. I didn't know such a thing existed until recently. They are the drug specialists of course and a hospital consultant agreed they are often very good. The GPs generally appear to know little about thyroid it seems.

SlowDragon profile image
SlowDragonAdministrator in reply to Stokelad

Are you aware you MUST take levothyroxine on its own well away from all other medications or supplements Do you always get same brand levothyroxine at each prescription

Many people find different brands are not interchangeable

Which brand of levothyroxine are you currently taking

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime or in middle of night

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning,

delay Saturday evening dose levothyroxine until Sunday morning.

Delay Sunday evening dose levothyroxine until after blood test on Monday morning.

Take Monday evening dose levothyroxine as per normal

When were vitamin D, folate, ferritin and B12 last test

What vitamin supplements are you currently taking

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

Are you coeliac or gluten intolerant

Are you on strictly gluten free diet

elwins profile image
elwins

My Doctors surgery are very good at printing results out for me, as long as a Doctor has seen them. We are legally allowed a copy of them, I keep a file of all my results for future reference. They even print them whilst I wait. Last time they bought them through to to me whilst I waited to see the doctor. Best of luck.

Lulu2607 profile image
Lulu2607

Hi Stokelad. I'm not quite as knowledgeable as some on this forum as I started on levo just last year. My understanding is that the Dr should take your symptoms into account when reviewing your blood results and prescription, and consider possibly increasing your dose to see if it helps. When it comes to 'normal' blood ranges there has to be number that's right for you and maybe you're not currently at that point, hence the symptoms. Sleeping problems are associated with a hypothyroid condition too, so hopefully with an increased dose of levo you will start to feel better. A lot of Drs will assume you're OK if your blood results are in range but that's not always the case as many on this forum will tell you. Hope you get sorted.

Stokelad profile image
Stokelad in reply to Lulu2607

Thank you very much for your help . I just hope he listens when I go

Lulu2607 profile image
Lulu2607 in reply to Stokelad

Hi Stoke lad, just wondering how you got on at the Drs. I hope they were helpful and gave you some good advice.

Stokelad profile image
Stokelad in reply to Lulu2607

Hi lulu it's Thurs I go doc I got the wrong date lol . To tell you the truth I won't hold my breath 🙄

JAmanda profile image
JAmanda

Have a look at websites like Monitor my Health and Blue Horizon and Medichecks ad consider paying for a set of private tests so you’ve got the complete picture. Don’t take your Levo on day of test. Then post results here for advice.

mistydog profile image
mistydog

Great advice so far. You have the advantage of being male and therefore more likely to be listened to. Arm yourself with facts from here and be proactive. Good luck.

MissDemeanour191 profile image
MissDemeanour191

STRESS...that's what causes repetitive songs in head. Also OCD obsessive compulsive disorder, however, do wonder if thyroid connected. Also misphonia? A dislike of loud, unecessary noise...like on tv when adverts come on they seem much louder! Sure have read on here it's thyroid related, also over sensitivity to smells! 150mcg is higher dose of TSH. Buf without your medical history/results cannit comment. My GP wanted to reduce my dose from 125mcg to 100mcg purely because my TSH had dropped to well under 1. They wanted me to ring GP'S....I didn't. Guess what? Next prescription I requested 125mcg and I got 125mcg! As said on here GP'S management of your Thyroid condition can be shocking. I have had to go private (pay) for full blood results...Medichecks are good. Good luck!

eeng profile image
eeng in reply to MissDemeanour191

The adverts on TV are indeed louder than the programs. It's the way they measure the average sound level. It's not your imagination.

Stokelad profile image
Stokelad in reply to eeng

It's horrible one of my ears keeps feeling like it's filling up with water .and everything see so load 🤷‍♂️

JAmanda profile image
JAmanda in reply to Stokelad

I wouldn’t wait for the docs results as they won’t include T3 anyway. I’d spend on doing tests privately then you’ll see what’s what. Poorly managed under active thyroid can cause any number of symptoms including anxiety depression aches and pains tinnitus etc

Charlie-Farley profile image
Charlie-Farley

Hi Stokelad

I was “in range” at every request I put in for a dose increase - full explanation on my profile- argued up to 150 µg levothyroxine and I’m doing well 😊👍

Treat words like “normal” and phrases like “within range” with caution.

The forum armed me with the knowledge to fight my corner make sure you let them do the same for you.

Welcome to the club!

Stokelad profile image
Stokelad in reply to Charlie-Farley

Thank you very much xx

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