not sure whats going on: hi there I have had... - Thyroid UK

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not sure whats going on

topgirl26 profile image
41 Replies

hi there I have had underactive thyroid for nerarly 10 years and suffer with depression, I had a load of bloods tests done my thyroid leveles are tsh3.47 and t4 17.5, all the bloods are coming back as normal but why do I feel so tired and tearful all the time, the doctors say the depression is back increase the medication, still dont feel good at all and feeling ill, please can someone help me thank you very much

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41 Replies
Regenallotment profile image
Regenallotment

hi TopGirl,

Sorry to hear you aren’t feeling too good.

What is your usual dose of thyroid hormones? Levothyroxine ?

I can say I felt better when my TSH was closer to 1. You don’t have the lab range there but it could be that you are undermedicated.

Normal isn’t normal if you still have symptoms. GPs often miss this and tell us everything looks ok.

Other thing to look at is vitamins, D, B12, ferritin and folate, we are often deficient which affects our absorption of thyroid hormones.

Hope you feel better soon.

🌱

topgirl26 profile image
topgirl26 in reply to Regenallotment

Hi

My normal dose is 75mg

Thank you so much for your reply, my TSH is 3.47, and T4 17.5, I was taking, folic acid and now taking VD as these were low, I have had bloods done 7 July and everything comes back normal, to be honest I dont really understand the jargon to be honest, should I go back to Reg

Regenallotment profile image
Regenallotment in reply to topgirl26

How long have you been on 75mcg?

If more that 8 weeks, I would go back to the doc and say you would like to trial 100mcg and to get vits tested too.

🌱

SovietSong profile image
SovietSong

To get the full picture the t3 must be tested.Most doctors mine included only test tsh and t4 which on their own are useless.So many doctors just hand out antidepressants or painkillers and are uneducated on thyroid.Thyroid issues can cause depression. The list of symptoms is endless.

Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and offer recommendations better. Click on your image icon to start.

Do you have the reference range for the FT4 result - numbers in brackets after your result number? This is important as ranges vary from lab to lab.

Most people feel well when their TSH is at or just under 1, so yours at 3.47 is too high and you are due a dose increase. Many doctors are content to just normalise our blood results but to feel well our results need to be in the lower prat of the range.

The NHS only measure TSH & FT4, ignoring the active hormone FT3. When you take Levo your body converts it into the active T3 hormone and not everyone does this well. You will likely need to get private blood tests run to see that result.

Do you always get the same brand of Levo at each prescription. Many members find brands are not interchangeable. Your GP can write the brand you prefer in the first line of the prescription.

Being hypo gives us low stomach acid which means we cannot absorb vitamins well from our diet. We need OPTIMAL levels of vitamins for our thyroid hormone to work well. Can you ask your GP to test ferritin, folate, B12 & D3? Private tests are available, see link for discount codes. thyroiduk.org/help-and-supp...

Do you know if you had positive thyroid antibodies? Many with Hashimoto's benefit from a strictly gluten free diet.

in reply to Jaydee1507

Hi I have not been given any advice on diet, what I should or should not eat no defo not had any info , just get told it's normal thanks

Jaydee1507 profile image
Jaydee1507Administrator in reply to

Many thyroid patients find that they have to become a little knowledgable about what will help them to be well and then be more assertive in a nice way with their GP.

Patient groups like this exist because GPs do not have all the information required to make you well. Take some time and read around this group so see that you are not alone and pick up tips on things that you can do for yourself to help.

First step - get a dose raise.

Second step - get vitamins tested and post results here.

topgirl26 profile image
topgirl26 in reply to

I dont know if I have thyroid antibodies, I have never been told anything just to take the medication, i really did not know there was so much to know to keep well

SeasideSusie profile image
SeasideSusieRemembering

topgirl26

Your TSH is telling us you are undermedicated but we really need to see FT4 and FT3 levels with their reference ranges to be sure, this is because certain things can cause results to be inaccurate.

We always advise thyroid testing be done as follows:

* No later than 9am

* Nothing to eat or drink except water before the test as certain foods and drinks can affect TSH

* Last dose of Levo 24 hours before the test to avoid a false high or false low FT4 result

* No biotin, B Complex or any supplement containing biotin for 3-7 days before test

Is this how you did your test?

If so and your results are accurate then you need an increase in your dose, don't let your GP tell you that your results are in range so therefore you are fine. Please read this post, take whatever information you think necessary to your GP to show that you need to bring your TSH down:

healthunlocked.com/thyroidu...

Your profile shows that you take 75mcg Levo which is only one step up from a starter dose. A more common dose is around 125-150mcg.

Do you take your paroxetine well away from your Levo, ideally at opposite ends of the day, to avoid any interaction and interference with your Levo?

topgirl26 profile image
topgirl26 in reply to SeasideSusie

No I take all the tablets in the morning together, thinking this would be ok, I so confused with it all, thank you again for your superb answer to everyone.

SlowDragon profile image
SlowDragonAdministrator in reply to topgirl26

So first step is to ALWAYS take levothyroxine on its own on empty stomach with only water for at least an hour after

which brand is your levothyroxine

If it’s a single tablet it will be Teva brand as that’s only brand that makes 75mcg tablet

Teva brand upsets many people

Request increase in dose to 100mcg

Also request GP test vitamin D, folate, ferritin and B12 and thyroid antibodies now

in reply to SlowDragon

Hi the tablet are in a purple pack I have since may had bad upset stomach aswell could this be the thyroid thanks

SlowDragon profile image
SlowDragonAdministrator in reply to

Is it a single 75mcg tablet per day

topgirl26 profile image
topgirl26 in reply to SlowDragon

Yes it is

SlowDragon profile image
SlowDragonAdministrator in reply to topgirl26

So that’s Teva brand

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Many people find Levothyroxine brands are not interchangeable.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

Lactose free brands - currently Teva or Vencamil only

Vencamil (previously called Aristo)

(currently 100mcg only) is lactose free and mannitol free.

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply to topgirl26

Suggest you

1) get dose increase to 100mcg - initially stay on Teva brand while you increase dose

Then consider trying different brand in 2-3 months

Only ever make one change at a time

2) always take levothyroxine at least 2 hours away from any other medication or vitamin supplements

3) get vitamin levels tested now and come back with new post once you get results

topgirl26 profile image
topgirl26 in reply to SeasideSusie

Hi thank you so much serum TSH level is result 3.47mlU/L normal range 0.27-4.2 came back normal?

Serum free T4 level 17.5pmol/L result normal range 110-21.2 says normal, can you please help with this than you so much

SeasideSusie profile image
SeasideSusieRemembering in reply to topgirl26

topgirl26

Your FT4 is 63.73% through range so plenty of room to increase.

As has been mentioned, TSH is far too highs you need an increase in your Levo to bring this down, this will increase your FT4 but wont take it over range as it's nowhere near the top.

Read through this post:

healthunlocked.com/thyroidu...

Take any information to show your GP that will help your support for an increase.

SlowDragon profile image
SlowDragonAdministrator

on levothyroxine TSH should always be below 2

How much levothyroxine are you taking

Do you always get same brand levothyroxine at each prescription

Was test done early morning, ideally just before 9am, only water to drink between waking and test and last dose levothyroxine 24 hours before test

Your results suggest you need 25mcg dose increase in levothyroxine

Bloods retested 6-8 weeks after any dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

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.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test 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 and money off codes

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

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism - including depression

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

topgirl26 profile image
topgirl26 in reply to SlowDragon

Hi thank you so very much for your advice, I have got a new doctor and will be seeing him today. But still feel anxious as feel he wont really listen, what I would like to know is can they tell if its depression or thyroid, I am tearful and very low thank you all

SlowDragon profile image
SlowDragonAdministrator in reply to topgirl26

Being hypothyroid frequently results in feeling depressed and will improve when adequately treated

SlowDragon profile image
SlowDragonAdministrator in reply to topgirl26

Push hard for “trial” increase to 100mcg Levothyroxine per day

Are you now taking Levothyroxine correctly, on empty stomach and nothing apart from water for at least an hour after

Vitamin D tablets at least 4 hours away from Levothyroxine and usually high fat meal …..so usually dinners

Vitamin D mouth spray only needs be an hour away as absorbed in mouth not gut

topgirl26 profile image
topgirl26 in reply to SlowDragon

yes i am, thank you

SlowDragon profile image
SlowDragonAdministrator in reply to topgirl26

how much do you weigh in kilo

Guidelines on dose by weight is approximately 1.6 mcg levothyroxine per kilo of your weight per day

Unless very petite that’s likely at least over 100mcg per day

topgirl26 profile image
topgirl26 in reply to SlowDragon

74 kilo

SlowDragon profile image
SlowDragonAdministrator in reply to topgirl26

So likely eventual dose might be

74kg x 1.6mcg = 118mcg per day

118mcg x 7 days = 828mcg per week

So that’s nearest to 825mcg

125mcg x 5 days and 100mcg 2 days a week = 825mcg

We only increase by maximum of 25mcg per day at any one time

So initially increase to 100mcg per day

Wait at least 8 weeks before retesting

ALWAYS test early morning, ideally just before 9am and only drink water between waking and test and importantly last dose levothyroxine 24 hours before test

ESSENTIAL to test folate, B12, ferritin at least annually

Test Vitamin D twice a year

topgirl26 profile image
topgirl26 in reply to SlowDragon

Thank you for your advice much appreciated, went to new doctor very helpful when I mentioned an increase of thyroxine, he said not need as results ate normal, it's my depression thsts making me feel unwell, see how I go got to go back in 3 weeks

SlowDragon profile image
SlowDragonAdministrator in reply to topgirl26

That’s Bull****

With ongoing symptoms and on levothyroxine TSH should ALWAYS be below 2

Most people when adequately treated will have TSH around or below 1

Print out guidelines I gave you

Contact/Email GP and say you understand you’re not on high enough dose levothyroxine and will be increasing to 100mcg

Include copies of guidelines I gave you

If GP still refuses to increase dose

See endocrinologist or thyroid specialist privately

List of thyroid specialists and endocrinologists

healthunlocked.com/thyroidu...

topgirl26 profile image
topgirl26 in reply to SlowDragon

My TSH is 3.47mlU/L and the T4 is 17.5p mol/L, thank again for your advice

FancyPants54 profile image
FancyPants54 in reply to topgirl26

As others are saying here, your TSH is too high. The GP doesn't know more than to say "it's in range so it's OK". We have discovered, by talking to each other, that patients feel better when their TSH is 1 or below. That's still in range, but the other end of the range. Do what SlowDragon has said. Write, enclose the guidelines, highlight the relevant bits. And ask for a trial increase to 100mcg a day with immediate effect. Also include the request for the blood tests she has listed for you.

We all have to do this. We have to fight the NHS to get what we want or we have to go private. But for now you need to learn more about your condition and to fight for the medication increase.

Depression and anxiety are both really important symptoms of hypothyroidism. He/she can't say "It's your depression" when you have a TSH as high as yours.

You can learn by reading on this forum. And you can read books. My favourite thyroid primer to recommend to people is this one. He covers it all and in very readable form. A lovely doctor, sadly no longer with us.

amazon.co.uk/Your-Thyroid-H...

topgirl26 profile image
topgirl26 in reply to SlowDragon

Thank you, i only have 75mcg tablets how to i increase to 100 without seeing doctor?

SlowDragon profile image
SlowDragonAdministrator in reply to topgirl26

No I take all the tablets in the morning together, thinking this would be ok,

you are now taking levothyroxine correctly, on empty stomach and then nothing apart from water for at least an hour…..no other medication or supplements within 2 hours

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)

Request GP retest 6-8 weeks after taking levothyroxine correctly

Book early morning test and last dose levothyroxine 24 hours before test

Come back with new post once you get results

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

topgirl26 profile image
topgirl26 in reply to SlowDragon

thank you, i have took your advice and taking levothyroxine on its own with water, and then take the other med about 1 or later, i am feeling quite a bit better, thank you i will follow your advice, thanks again

SlowDragon profile image
SlowDragonAdministrator in reply to topgirl26

no other medications or supplements within 2 hours

Retest thyroid levels in 6-8 weeks

topgirl26 profile image
topgirl26 in reply to SlowDragon

Hi I have ordered a thyroid test so hope this will help with my results, I attend Memorial Hospital Mental Health, I explained to the doctor how I was feeling, he wants me to have a CT brain scan then have a memory test then anther Scan, I am going to the doctors on Tuesday and I am going to ask for an increase in meds and take some info I have got from this site, hopefully he will listen and help me, dont know what to do if he says no.

SlowDragon profile image
SlowDragonAdministrator in reply to topgirl26

Don’t do test until you have been taking dose correctly for 6 weeks

SlowDragon profile image
SlowDragonAdministrator in reply to topgirl26

dont know what to do if he says no.

if GP won’t increase request/insist on referral to Thyroid specialist once you have new test results

Here’s List of thyroid specialists and endocrinologists

Some are NHS and Private

healthunlocked.com/thyroidu...

topgirl26 profile image
topgirl26 in reply to SlowDragon

Aww thank you, as I said I have been feeling so unwell, today Saturday I woke up and felt awful, so just did nothing, so now at around 5ish I start to have a bit of energy so I hoovered the bedroom and tidied up a bit, how does this happen do you have any advise please, how can you feel so unwell, then like someone has pluged me in the energy socket, this has happened a few times but never lasts, just nice to have a bit of energy for 5 minuets. Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to topgirl26

Very common to feel worse in morning

When not on high enough dose adrenals try to compensate for lack of thyroid hormone

Adrenals (cortisol) has pronounced diurnal variation…..you need high levels in morning and less as day goes on

Now you are taking levothyroxine correctly all the endocrine system is rebalancing…..test thyroid and vitamins after 6 weeks taking correctly

topgirl26 profile image
topgirl26 in reply to SlowDragon

thank you so muck for explaining this, I thought i was going mad with all the different feeling, Thanks again

SlowDragon profile image
SlowDragonAdministrator

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

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

Page 9

Test for Deficiency of any of the following: Vitamin B12, Folate, Vitamin D, Iron

See page 13

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

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