I can never get my head around this condition! - Thyroid UK

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I can never get my head around this condition!

janet65 profile image
47 Replies

Hi everyone,

I was diagnosed hypo back in 1997 ish! I was mostly on 50mcg of levothyroxine for many years then onto 75mcg at some point. Later even alternating 50/75 alternate days.

In July 2020 my GP testing numbers were: TSH 2.83, T4 21 (range 12-22) I wasn't feeling too good so opted to do the alternate days of 50/75.

I think I was retested Dec 2020 (?) TSH3.88, T4 18. I carried on with 50/75 because I felt well.

Next testing was Dec 2021. TSH 5.11 and I was told to take 75 every day. To be tested in 2 months.

Feb 2022. TSH 6.94 (range 0.27-4.20) T4 15 (range 11-22)

My GP wants me on 100cmg of levo but I'm anti because I've been given that dose before and remember feeling 'unwell'.

My totally unqualified thoughts on the subject of the upward trend is: a) am I absorbing the levo? b) is the brand 'Teva' not suiting me? Two days ago I switched to taking MercuryPharma.

I shall discuss with my GP on Monday but not over confident that he will have the answer.

Any clues please why the TSH is climbing? Thanks for any help.

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janet65
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shaws profile image
shawsAdministrator

Welcome back janet65, I am sorry you've not been feeling well. The following

Feb 2022. TSH 6.94 (range 0.27-4.20) T4 15 (range 11-22).

Your TSH is too high - the aim being a TSH of 1 or lower. Your T4 is low,

Your GP should increase your dose in order to bring TSH down to around 1 or lower and request he checks your Free T3 and Free T4 too. The aim for the latter two is to be in the upper part of the ranges.

When we're hypo the aim is to get sufficient thyroid hormone replacements to bring TSH to around 1 or lower. We should also get the Frees tested (i.e. FT4 and FT3). The aim is that both Frees are in the upper part of the ranges.

You might find it worthwhile to raise your dose as the pharma company may have made small changes to levo.

Do you take levothyroxine on an empty stomach (usually when we awake but some prefer a 'middle of the night dose). Levo should be taken with one glass of water and wait an hour before you eat as food can interfere with its uptake.

I am not medically qualified but you can read my 'history' by clicking on my name and it will take you to a new page.

Also request doctor to test Free T3 and Free T4. If you've also not had B12, Vit D, iron, ferritin and folate tested recently request these too.

Put your results on a new post with the ranges for more comments.

janet65 profile image
janet65 in reply toshaws

Thank you for all your advice. Yes, when I speak to the GP I shall ask for a TSH, T4 & T3 to be done. The only person who ever did that for me was a gastroenterologist.

No, I didn't know that others weren't doing well on Teva....I've been taking it for a very long time so is probably the reason I'm in this predicament!

Thanks for you help and advice. I didn't understand that T4 needs to be near the top of the range and TSH very low number.

shaws profile image
shawsAdministrator in reply tojanet65

Request a Free T4 and Free T3 and the following is an an explanation of 'free'

Why Do We Test For It?

Explanation in link below.:-

imaware.health/biomarkers/f...

When our thyroid gland is failing, we probably never have heard the word

hypothyroidism. I hadn't but neither did any of the doctors I paid. There was more than 2 or 3.

Always make your blood test appointment for thyroid hormones at the very earliest - even if made weeks ahead - and it is a fasting test (you can drink water) but don't take thyroid hormones before the blood draw but afterwards. Always take thyroid hormones with one glass of water as sometimes it could stick in throat. . Wait about an hour after taking thyroid hormones before you eat. Food can interfere with its uptake.

Noelnoel profile image
Noelnoel in reply toshaws

Hi shaws, the article states:

Your body can convert T4 to T3 if necessary

I thought this was happening all the time and as a matter of course. Maybe it’s my misunderstanding. It’s often also presented on here as though it’s T4’s only function. Obviously that’s wrong but the point about it converting to T3 only when necessary perhaps needs clarifying. Does anyone have knowledge or articles to the contrary?

tattybogle profile image
tattybogle in reply toNoelnoel

Hi Noelnoel ,just had a look at a quote from that link from shaws

"These hormones are: T3 (triiodothyronine), which contributes to the body’s muscle control, digestion, heart function, and bone health; and T4 (thyroxine), which helps maintain metabolism, mood, and body temperature. Your body can convert T4 to T3 if necessary."

it's not correct.

That makes it sound like T3 does one job and T4 does others.

this is NOT the case.

I have no idea were they got the idea that T4 'does' those things . It is the action of T3 that does ALL those things.

T4 is a storage and transport form of T3 , with a long life.

T3 is the ONLY one that has direct effects inside cells.

T4 always has to be converted into T3 inside the cells before it can 'do' anything.

T4 itself can't 'do' anything as it simply doesn't fit into our T3 receptors until it's had one of it's Iodine atoms removed ... then it fits and it can trigger whatever action that particular cell does.

It is also somewhat misleading in that it gives 'normal ' ranges for fT4 and fT3 . But different labs use different ranges , and we can't compare a result done on one lab machine to another result from a different lab who's machine has different ranges.

Noelnoel profile image
Noelnoel in reply totattybogle

Thank you tattybogle

This illustrates beautifully why we should always apply due diligence, particularly concerning health matters. There are a lot of well-meaning people on this fantastic forum but there is also a lot of misinformation

Thank you for clarifying T4’s role, it’s as I knew but people often think that its sole function is to convert to T3

tattybogle profile image
tattybogle in reply toNoelnoel

"Thank you for clarifying T4’s role, it’s as I knew but people often think that it’s sole function is to convert to T3"

Do you mean you think it does have other functions ? or have i just read that wrong .

If there are any functions of T4 other than to hang around and wait to be converted to T3 , i don't think anybody has discovered with any certainty what they are yet.

Some people on here with NO thyroid seem to manage just fine of T3 only, despite having no T4 at all .

There IS recent research showing that T4 has an effect on some receptors on the outside of cell walls that seems to have some relation to cancer proliferation .. higher rT4 levels = more proliferation .. but it's a bit complicated . not all cancers are the same Jimh111 has done a recent post looking at what is known about this so far

healthunlocked.com/thyroidu...

Noelnoel profile image
Noelnoel in reply totattybogle

Hi tattybogle

Do you mean you think it does have other functions ? or have i just read that wrong

No, it’s as you say, it triggers, transports and stores and this I knew but it will have other functions to which we remain ignorant, for now. What I meant was, there’ll be functions yet to be discovered and even if not, it will most certainly have knock-on effects that we’re unaware of. After all, every action/reaction creates another and another and to say (not you) that its sole function is conversion, is simply misleading

All a bit philosophical I know but if you can’t be philosophical on a Sunday, when can you

Luckily for us science has progressed enormously these last 50 years and we know so much (even us lay-people) enabling self-treatment but interestingly/paradoxically the treatment of thyroid dysfunction has regressed. Medicine is a marvellous tool but some medics, not so much

shaws profile image
shawsAdministrator in reply totattybogle

Exellent response tattybogle much better than mine would have been.

😀

tattybogle profile image
tattybogle in reply toshaws

Thanks Shaws ....my responses are likely to go downhill from here on in .. i've just decided i'm having a glass of Cider .... after which i won't be able to spell 'philosophical' on a sunday Noelnoel :)

shaws profile image
shawsAdministrator in reply totattybogle

Oh! tattybogle I'm sure you will be fine after your glass of Cider or even 2 or 3 :-

You might even have increased your energy level at the same time.

Noelnoel profile image
Noelnoel in reply totattybogle

Tattybogle (or anyone really), you may have had one too many ciders by now and if that’s the case, good luck to you but this comment further down the post, any thoughts on it?

TSH is naturally higher in winter and lower in summer…

Perhaps your response can wait till tomorrow!

tattybogle profile image
tattybogle in reply toNoelnoel

TSH naturally higher in winter than summer ?

yes it is true . in people without any thyroid problem that is what happens naturally.

Not sure how much higher , probably not 'very much'.

It's colder .... more energy needed to keep warm..... so it's logical.

don't know if the same effect is so noticeable once we take replacement thyroid hormones though ....but i expect it is to some degree.

Some people do take slightly higher doses each winter and then reduce again for summer.

Same thing probably happens if moving to hot countries / staying in the arctic circle

Noelnoel profile image
Noelnoel in reply totattybogle

That is soooo clever!

jaz03 profile image
jaz03 in reply totattybogle

Hi. Yes exactly.Worrying about T4 is useless as in my case if I need to tae more thyroxin to lower TSH I have to.

Without a thyroid I keep to a TSH of 2.0 - 3.0. Not too high or low.

I am free of cancer after 2 clear neck scans.

I take my Synthroid under tongue so it goes into the blood stream like my B12 nuggets Solgar range. A recent B12 test shows 465. Should be high for older like me.

73 years young!

I also have AF but the rapid persistent irregular kind. Developed when undiagnosed papillary cancer was happening.

Cheri.

Blobby1234 profile image
Blobby1234 in reply totattybogle

I am going to print this out and take it to my GP. She does not appear to know the difference between Total T3 (mine's at the bottom of normal range) and Free T3, which she reckons they're not allowed to order.

janet65 profile image
janet65 in reply toBlobby1234

Yes I've been told that in the past that they don't need to do T3. I think in April I'll do a private test myself.

Catseyes235 profile image
Catseyes235 in reply totattybogle

Thanks for that clarification. That description of T4 as a storage and transport form is a great way of describing it. I read so many articles and sometimes end up more confused than when I started....just as I think I’ve grasped something it all seems like sand slipping through my fingers. At the moment I’m considering giving up on T3 (I’m a poor converter). because of palpitations and would like to try going back to the 150 mcg T4 which I was happily taking before a doctor picked up on my really low TSH. TSH has been really low for 20 years (praise for NHS records online!). but FT4 and FT3 always well within range. My own regular doc knew this but was not guided by TSH alone and more but how I felt and symptoms. I’m going to post this in another new strand but you seem to have a good grasp of everything and I understand your replies!

jaz03 profile image
jaz03 in reply toNoelnoel

Hi. You have got it.

TSH is the important figure.

I have no thyroid now.

I take 125mcg under tongue dissolving.

Deficient in B2 and no gall bladder.

I take B12suplement as a nugget under tongue! Solgar gold top.

Works perfectly. 1 nugget x 2 days per week only.

I'm tested yrly. Latest 465.

cheri

TSH 1.6

jaz03 profile image
jaz03 in reply toshaws

Hi the blood test fasting makes little difference to TSH but it does push up T4.

cheri

Some bulk levo cannot be relied on. I love Synthyroid because it is kiddie locked, has an expiry date and hs an absorption weight in it.

No bulk buying.

Some people are allergic to the dyes in the pill.

cheri

Buzcat profile image
Buzcat in reply tojanet65

I was on Mercury pharma for years and was well on this brand the pharmacy switched me to Teva I became very unwell having to attend AandE kept going back to my GP she kept saying it was my age my daughter had the same problem it looked as if we weren’t absorbing this Teva for some reason I ended up taking a heart attack the doctor now writes our brand on prescription now.

JaneChapple profile image
JaneChapple in reply toBuzcat

Good grief, I hope she apologised?! A change of doctors maybe? All those appointments she could have saved!

JaneCxxx😍😎❤

janet65 profile image
janet65 in reply toJaneChapple

I haven't met a GP yet who IMO fully understands the thyroid...and that's rich considering I don't know much either!!

shaws profile image
shawsAdministrator in reply toBuzcat

I am very sorry you had a heart attack and that, in itself, is an awful thing to undergo.

Just goes to show that endocrinologists should take all of these possibilities into account.

janet65 profile image
janet65 in reply toBuzcat

I'm so sorry to hear that worse case scenario!!!! I hope your heart made a full recovery. That really is my thought that I'm not absorbing the Teva. I shall be having MP written on my repeat prescriptions too. Thanks for sharing that.

jaz03 profile image
jaz03 in reply toshaws

HiI take Synthyroid under the tongue so it goes straight into blood stream.

Take piece of banana at 1/2 hr.

Due to thyroid Papillary I have had my thyroid removed.

With 2 clear neck scans my surgeon suggests that I keep my TSH at between 2.0 and 3.0. Not too high and not too low. Forget T4 The thyroxin will move that up or down.

I never had radio active iodine nor did I get into suppression of TSH.

I showed 2.0 when I was diagnosed with the cancer.

cheri

fuchsia-pink profile image
fuchsia-pink

I'd see if the GP will do more tests next time. In July 2020 your TSH was still higher than most of us want - but free T4 was near the top of the lab range. Since then, thing have gone down hill. Please see if s/he will do all the tests recommended by Thyroid UK - TSH, free T4, free T3 and key nutrients - ferritin, folate, vit D and B12 [early morning fasting blood test, no later than 9am and 24 hours from previous dose of levo].

Two other things you should try (Imho) - (a) see how you do on the Mercury Pharma - you're probably aware that lots of people don't get on with Teva; and (b) try the new dose split into 2 - say half in the morning and half at night, and see if that works better, as you didn't feel well with 100 mcg in one go before.

You are ENTITLED to feel properly, fully well - but for some of us, that just doesn't happen if all they test is TH and free T4. Good luck x

janet65 profile image
janet65 in reply tofuchsia-pink

Thank you for that suggestion of dividing the 100mcg dose! I'm on that one for sure. Yes I've been tested (for other reasons) for Vit D - Optimal and the others. I had colon cancer in April 2020 and my haemoglobin went down to 102....thankfully back up to my normal 135. now.

You are right, we are entitled to feel well. xx

SlowDragon profile image
SlowDragonAdministrator in reply tojanet65

What are your actual vitamin D, folate, ferritin and B12 results and ranges

janet65 profile image
janet65 in reply toSlowDragon

Vit D - 123, B12 - 558, ferritin 47 at last test after cancer op, I'm sure it's still climbing,

SlowDragon profile image
SlowDragonAdministrator in reply tojanet65

Ferritin is too low

Worth retest now

have a private hospital but can't ask them yet because they're dealing with a trigger thumb.... I'm a mess!!

Hypothyroidism and trigger finger

nhs.uk/conditions/trigger-f...

janet65 profile image
janet65 in reply toSlowDragon

This is a genuine damaged thumb....I strained the first joint trying to open a bottle of hoisin sauce....it will be a quick release procedure. I don't do well on steroid injections so have refused those. At the moment it's stiff, not bent and unmoveable. The private hospital is Benenden. I've been referred as a member but also through the NHS system, that's why I can only have one case open at a time.

SlowDragon profile image
SlowDragonAdministrator

Just testing TSH and Ft4 is completely inadequate

On levothyroxine the aim is to increase the dose slowly upwards in 25mcg steps until TSH is always below 2

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

Are you currently taking any vitamin supplements

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 early morning, ideally before 9am 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 by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Gluten intolerance is often a hidden issue with autoimmune thyroid disease. Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

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

janet65 profile image
janet65 in reply toSlowDragon

Thank you. I had considered Hashimoto and wondered if it applied to me. I'm being treated (long term) for severe eosinophilic asthma with biologic injections so already have autoimmune issues. Thank you for all the links too.

SlowDragon profile image
SlowDragonAdministrator in reply tojanet65

As per my previous replies 2 years ago

healthunlocked.com/thyroidu...

In order to make progress you need FULL thyroid and vitamin testing….for many U.K. patients that means testing privately

Come back with new post once you get results

Assuming you have Hashimoto’s, you also need coeliac blood test done, before considering trial on strictly gluten free diet

GP should always test for coeliac disease as diagnosis of autoimmune thyroid disease

janet65 profile image
janet65 in reply toSlowDragon

I just read back through my post 2 yrs ago and it's exactly the same position that has never been dealt work.

SlowDragon profile image
SlowDragonAdministrator in reply tojanet65

Thousands upon thousands of U.K. patients forced to test privately to make progress

healthunlocked.com/search/p...

healthunlocked.com/search/p...

healthunlocked.com/search/p...

Come back with new post once you get full thyroid and vitamin results

janet65 profile image
janet65 in reply toSlowDragon

Thank you.

Alejandrita17 profile image
Alejandrita17

TSH is naturally higher in winter and lower in summer. Anyways, you are offrange. Have you changed your diet or habits?

janet65 profile image
janet65 in reply toAlejandrita17

Not that I'm aware of.... I didn't know TSH was prone to fluctuate with the seasons. Thanks.

Alejandrita17 profile image
Alejandrita17 in reply tojanet65

Thyroid hormones regulate body temperature, among other things. It's common that You need more hormones in winter (to warm up your body) than in summer. The same happens with your lifestyle, diet, and so on. Energy demands fluctuate.

tattybogle profile image
tattybogle

Janet65 I

I suppose you could take 75mcg Mercury for a couple of months, so you can tell if you feel any different with a different brand... then get retested . If your TSH hasn't started to come down by then , i think you should definitely increase the dose .

Just because you previously felt unwell on 100mcg doesn't mean you will now .. perhaps the last time you didn't need that much, but TSH 6 is a clear indication you do need some more.

You don't have to go from 75 to 100 . You could try a smaller increase first ... 87.5mcg ( 100mcg /75mcg on alternate days )

janet65 profile image
janet65 in reply totattybogle

Thank you. I'm already on MP, 1st day 75mcg, 2nd day 75mcg (am) 25mcg (pm) 3rd day 50mcg (am) and later the other 50mcg. So far no headache like yesterday. If it was the Teva brand stalling me I may have the dose lowered when retested in April.

Suvi8901 profile image
Suvi8901

Is your GP a specialist endocrinologist or better still a trained postgraduate medic in thyroid gland endocrinology otherwise it will end up being unsatisfactory?!😥

janet65 profile image
janet65 in reply toSuvi8901

I'm never even met the GP (lockdown) but looking at a pic he doesn't look old enough to be out of school yet!! That's me being funny because he's young. He doesn't show any specialism after his name. I've thought about asking to see an Endocrinologist. The NHS waiting list is about 15weeks, I have a private hospital but can't ask them yet because they're dealing with a trigger thumb.... I'm a mess!! And the thyroid saga has been a continual stab in the dark at medicating me!

jaz03 profile image
jaz03

HiBecause you dont have a ideal TSH.

Have your thyroid checked with a neck scan. Do you have cancer Papillary is very slow growing and often no lumps with thyroid levels normal.

There is also a test called thyroglobin or something.

Any normal person would not need to take thyroxin.

Swiftness needs to go forward as I had a stroke due to developing AF Atrial Fibrillation which csused the stroke.

Get the best care and attention.

Often doctors are not that good on thyroid and TSH.

More tests.

chreri

janet65 profile image
janet65 in reply tojaz03

I lived in Spain for 14 yrs and they did scans on my thyroid every 2 yrs. On my return to England I was soon told that the NHS doesn't have money for such luxuries like Spain.... I've just had my heart checked on a B/T last Nov and the results were normal. I've also had quite a few doppler scans because of meds that can damage the heart. Thanks Chreri.

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