Help - underactive Thyroid: Hi there. I'm fairly... - Thyroid UK

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Help - underactive Thyroid

IAAK profile image
IAAK
12 Replies

Hi there. I'm fairly new to all this...will try to keep it as brief as possible!

Diagnosed with underactive Thyroid (March this year). After taking 50mcg Thyroxine for 6 weeks and still feeling awful I revisit Doctor. He refuses to do another blood test saying I will have to wait 6 months.

I am exhausted, depressed, gained weight, get muscle aches and pains, nausea thinning hair....these symptoms are affecting my work, life, family. I posted on here and received some very helpful replies.

Decided to take matters into my own hands and paid for Thyroid Check Plus via Medichecks, the results of which I received today. Everything is in normal range!! I feel like I'm going crazy now!

TSH - 0.494

FREE T3 - 4.71

FREE THYROXINE - 16.9

THYROGLOBULIN ANTIBODIES - 11.9

THYROID PEROXIDASE ANTIBODIES - <9

Basically my concern is that readings are in normal range but I still feel just as unwell. Is this because even though in normal range it can still take a long time to feel better? If I know I there's a chance I'll feel normal again and get my life back, this will help me get through these challenging times.

I would like to know why I have an underactive thyroid as it's obviously not Hashimoto's. How do I find out?

Thank you

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IAAK
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SeasideSusie profile image
SeasideSusieRemembering

He refuses to do another blood test saying I will have to wait 6 months.

Wrong, so, so wrong. Your GP needs reminding of the NICE Clinical Knowledge Summary

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

How should I initiate and titrate levothyroxine?

•The dose of levothyroxine (LT4) should be individualized on the basis of clinical and biochemical (thyroid function tests) response. Treatment must be monitored regularly to determine an adequate dose and to avoid both under-treatment and over-treatment.

•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.

◦For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.

•Once a stable thyroid-stimulating hormone (TSH) level is achieved and an adequate dose determined, arrange follow up to check thyroid function tests (TFTs) at 4–6 months and then annually.

So you can see that you should have had a retest by now - we advise 6 weeks but the Summary says 3-4 weeks. The 6 monthly check comes in when your dose alleviates your symptoms, then annually after that.

TSH - 0.494

FREE T3 - 4.71

FREE THYROXINE - 16.9

THYROGLOBULIN ANTIBODIES - 11.9

THYROID PEROXIDASE ANTIBODIES - <9

We always need reference ranges when posting results, they vary from lab to lab.

However, as I know them I can tell you that your TSH is in a pretty good place. Your FT4 at 16.9 (12-22) is 49% through range and your FT3 at 4.71 (3.1-6.8) is 44% through range. They are pretty well balanced but not high enough in range yet. When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well. So you could do with an increase in Levo of 25mcg and retest in 6-8 weeks time.

Did you do this test under our advised conditions:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

I would like to know why I have an underactive thyroid as it's obviously not Hashimoto's. How do I find out?

That may well be impossible. Some of us just have hypothyroidism because our thyroid gland fails but we don't know why - I'm non-Hashi's hypo diagnosed in 1975 and to be honest I'm not bothered what caused it, knowing isn't going to make any difference.

What a shame you didn't get the Thyroid Check ULTRAVIT as recommended by SlowDragon in your last thread, it's very important to have optimal nutrient levels for thyroid hormone to work properly, and that test does all of them.

IAAK profile image
IAAK in reply to SeasideSusie

Thank you for your reply. I followed your guidelines on blood test I.e. early morning, empty stomach more than 24 hours after Thyroxine.

I think my doctor is the only one available at my surgery and I would rather not see him again as he seems to show no interest even though I tell him I'm feeling awful. If I were to go into a walk in centre, would they be able to help me? Getting a bit desperate to be honest....the depression is awful as well.

SeasideSusie profile image
SeasideSusieRemembering in reply to IAAK

If I were to go into a walk in centre, would they be able to help me?

Sorry, I have no experience of them, I live in a rural area and we don't have them so I don't know what their role exactly is or if they just treat like an "emergency" and refer you back to GP.

MaisieGray profile image
MaisieGray in reply to IAAK

I very much doubt that they would interfere with treatment for a chronic induction that wasn't urgent. From the NHS site:

At the moment, the NHS offers a mix of walk-in centres, urgent care centres, minor injury units and urgent treatment centres, all with different levels of service.

By the end of 2019, these will all be called urgent treatment centres.

Urgent treatment centres are GP-led and open for at least 12 hours a day every day of the week (including bank holidays).

You may be referred to an urgent treatment centre by NHS 111 or by your GP. You can also just turn up and walk in.

Conditions that can be treated at an urgent treatment centre include:

sprains and strains

suspected broken limbs

minor head injuries

cuts and grazes

bites and stings

minor scalds and burns

ear and throat infections

skin infections and rashes

eye problems

coughs and colds

feverish illness in adults

feverish illness in children

abdominal pain

vomiting and diarrhoea

emergency contraception

When you say your blood was drawn "more than 24 hrs after Thyroxine" how much longer did you leave it? It is possible that your thyroid hormone levels were artificially low if you went beyond 24 hrs.

IAAK profile image
IAAK in reply to MaisieGray

Hi. I normally take Thyroxine at 4.20am when I get up for work. Did blood test on day off at about 7.00am

SlowDragon profile image
SlowDragonAdministrator

You have two options....

Get vitamins tested...Private testing or moan a lot and get tested via GP

See different GP for possible dose increase in Levothyroxine

Would suspect you have low ferritin.....common with hair loss

Low vitamin D - bone and joint pain

Thyroid and vitamins are interlinked

Which brand of Levothyroxine are you currently taking?

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

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 (note recommended to avoid calcium rich foods at least four hours away from Levo)

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.

IAAK profile image
IAAK in reply to SlowDragon

Thanks for your help. I am on the Teva brand so that's interesting....I'm not Lactose intolerant so I could also perhaps ask to change brands.

I will ask for vitamin blood test I didn't realise there was such a big link.

Hopefully I can organise to see a different GP!

SlowDragon profile image
SlowDragonAdministrator in reply to IAAK

First step suggest you get new prescription for different brand of Levothyroxine

Thousands of people react extremely badly to Teva

healthunlocked.com/search/p...

List of different brands available here - easiest is probably Activis or Mercury Pharma

Though you will still need to collect paper prescription from GP's and may need to try several pharmacies until you get helpful one

thyroiduk.org.uk/tuk/treatm...

You will need Thyroid levels retested 6-8 weeks after changing brand

Put in a yellow card too for Teva, once you see if changed brand helps

yellowcard.mhra.gov.uk

IAAK profile image
IAAK in reply to SlowDragon

Very interesting and helpful thank you. Depression has worsened since taking Teva Thyroxine, I just put it down to a symptom of the under active thyroid. I have become more anxious and I find I'm even clenching my jaw a lot.

SlowDragon profile image
SlowDragonAdministrator in reply to IAAK

Grinding teeth and clenching jaw are common hypothyroid symptoms

Getting different brand of Levothyroxine and bloods retested 6-8 weeks later

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Despena profile image
Despena

You doctor is there to help you, unfortunately some doctors think they know us better than we know ourselves. Do not be afraid to insist you gp sends you for a test it’s there job and to see a specialist (not sure where you live but the Royal Free Hospital in Hampstead) has an excellent Endocrinology/Thyroid department (you should be seen by an Endocrinologist anyway), but you must insist, if your gp is still being unhelpful put in a complaint to the practice and change gp’s. I I’m on a 1000 mcg of thyroxine (yes not a miss spell 1000) I have been on this dose for over 30 years, like you I had all the symptoms you have described and the doctor would not help me (turned out in the end the only thing that the endocrinologist I saw was refer me for surgery). My old doctor had left me for so long without proper medication (I had an overactive thyroid but they insisted it was under active and where giving me Thyroxine) they completely removed my thyroid. What I’m trying to say here is it wasn’t till I got cross with my gp and reminded them that I have a say in my treatment that they finally took me serious and referred me to an endocrinologist and that was over 30 years ago, now it’s a lot easier, and my results are in the normal range on a 1000mcg (but on occasion they are a little bit low) it does change and the routine blood test they do sometimes are not helpful, you need to be under an endocrinologist for proper treatment and blood tests. I hope this helps

IAAK profile image
IAAK in reply to Despena

Yes this helps. Thank you for your reply.

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