Advice please, Levothyroxine, Hypothyroid and C... - Thyroid UK

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Advice please, Levothyroxine, Hypothyroid and Chronic Kidney Disease

Janet02 profile image
44 Replies

Hi everyone

I've had a total thyroidectomy and take Levothyroxine. I've always struggled with poor conversation, my latest results are:

TSH level 0.35 (normal range: 0.30-4.50)

T3 level 3.9 (normal range: 3.1-6.8)

T4 level 19.5 (normal range: 10.0-22.0)

I've just bee diagnosed with Stage 3 Chronic Kidney Disease. I was shocked and, after reading a number of related articles, I'm convinced it is related to my low T3 results.

Kidney disease is a scary diagnosis which could have a massive impact on my health. I need to do everything I possibly can to try and halt any deterioration to stage 4.

I have an appointment with my GP to discuss my care plan, I intend to ask for a referral to an endocrinologist and attempt to get prescribed natural T3. From previous experience, I know this may prove to be problematic, I think I need to go prepared with evidence to back up my request. I wondered if anyone knows of any credible studies that link Levothyroxine and low T3 to kidney disease.

Thank you.

44 Replies
SlowDragon profile image
SlowDragonAdministrator

There’s loads of links online showing that low GFR and poor kidney function is reversibly affected by low thyroid hormones, especially low Ft3

TSH level 0.35 (normal range: 0.30-4.50)

T3 level 3.9 (normal range: 3.1-6.8)

T4 level 19.5 (normal range: 10.0-22.0)

Was test done as recommended….early morning, ideally before 9am and last dose levothyroxine 24 hours before test

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

What were most recent vitamin D, folate, ferritin and B12 results

For good conversion of Ft4 to ft3 we need GOOD Vitamin Levels

Janet02 profile image
Janet02 in reply to SlowDragon

Thank you so much for your advice, I can't tell you how helpful it is.

I had no tests prior to my thyroidectomy and haven't previously been advised to try any special diets. I presume it's too late to get any autoimmune tests now.

My practice nurse hasn't taken any full bloods tests, so I couldn't comment on any vitamin results, that's something else I need to request. I do take vitamin D though.

My consultant recommended that I take my Levothyroxine at night, and my latest blood tests were taken about 9 hours after my last dose. I take 100mcg three days a week and 75mcg 4 days a week, I always get the same brand.

I've actually had to fight to get tested for T3 and T4, I was told that my TSH is within normal range but, as you say, my T3 tells a different story. I'll contact Thyroid UK for a list of specialist, I live in the North East of England.

My GP practice has recently merged with another practice and it will be the first time I've ever seen my new GP. I'm hoping that she will be more knowledgeable in this field open to my opinions and requests.

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts you had TT due to large goitre.

Have you had thyroid antibodies tested before thyroidectomy for autoimmune thyroid disease, also called Hashimoto’s

TPO and TG thyroid antibodies

Are you on, or have you tried strictly gluten free diet and/or dairy free or low dairy diet

SlowDragon profile image
SlowDragonAdministrator in reply to SlowDragon

So Ft4 is falsely high as last dose levothyroxine was only 9 hours before test

So you probably have room for further increase in levothyroxine ….

Approx how much do you weigh in kilo?

But Medics will only look at TSH and more likely want to reduce dose….

Strongly recommend getting full thyroid and vitamin testing done yourself privately via Medichecks or Blue horizon

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...

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

Test early Monday or Tuesday morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Don’t do test in heatwave

As 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

How much vitamin D are you currently taking?

Which brand of levothyroxine are you currently taking

Is it Teva?

Teva brand upsets many people

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

Janet02 profile image
Janet02 in reply to SlowDragon

I’m approx 54kg. The brand of levothyroxine is Almus.I take two Fultium D3 800 IU daily, this was prescribed when I had my thyroid removed. I will certainly get the test you recommend so that I can get a clear picture of what’s happening with vitamins and thyroid medication. I will also take onboard all your recommendations. Thanks again.

SlowDragon profile image
SlowDragonAdministrator in reply to Janet02

Is the 75mcg a single tablet…if so it will be Teva as that’s the only brand that makes 75mcg tablets

Come back with new post once you get results

posthinking01 profile image
posthinking01 in reply to Janet02

Hi again Janet - on another subject - remember your kidneys when people are advising taking D etc. - yours is not just a straightforward thyroid issue - get tested first before taking D which can put a strain on the kidneys - I was told so by my renal consultant but knew myself as it did not agree with me and D has to be metabolised by the kidneys as well as liver.

Janet02 profile image
Janet02 in reply to posthinking01

Thank you, this is all so new to me, I’ve certainly got a lot to understand.

Alanna012 profile image
Alanna012 in reply to posthinking01

It's true I seem to get problems with high Vit D supplementation

posthinking01 profile image
posthinking01 in reply to Alanna012

I always feel awful taking D and so does my partner he suffers with pains in an arm joint that got broken years ago - I was told in hospital by a renal consultant to be careful with D as the kidneys are quite heavily involved in processing it. I would never take more than 1,000 iu's a day anyway.

SlowDragon profile image
SlowDragonAdministrator

ncbi.nlm.nih.gov/pmc/articl...The GFR is reversibly reduced (by about 40%) in more than 55% of adults with hypothyroidism[40]

Of course your GP will just look at low TSH and think you’re not hypothyroid…..but your low Ft3 tells a different story

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

tukadmin@thyroiduk.org

Roughly where in U.K. are you

pennyannie profile image
pennyannie

Hello Janet and welcome to the forum :

Can I just add that the accepted conversion ratio when taking T4 - Levothyroxine only is said to be 1/ 3.50 - 4.50 with most people feeling at their best when they come in this range at around 4 or under :

So to find your conversion ratio you simply divide your T3 into your T4 and I'm getting yours coming in at around 5 so this shows you struggling to convert the T4 and wide of centre.

As you haven't a thyroid it is essential that you are dosed and monitored on a T3 and T4 blood test results and we usually feel at our best when these two vital hormones are balanced within the ranges at around a 1/4 ratio T3/T4.

I totally understand that in primary care all you are likely to get is a yearly thyroid function test and the odd T4 reading and it is extremely difficult if not impossible to question the system or the computer dogma.

So, as explained these results show a false high T4 but it's obvious your conversion is struggling and that you need additional hormone replacement to be well.

The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system nd your metabolism.

T4 is a prohormone, a storage hormone, and needs to be converted into T3 in your body and this procedure can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D and conversion can also be compromised by inflammation and any physiological stress ( emotional or physical ) dieting, depression and ageing, so whilst we can't turn back the clock we can try and do something about most of these issues.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10mcg plus a measure of T4 at around 100 mcg.

Some people can get by on 4 only :

Some people find that T4 seems to stop being as effective as it once was and feel better when adding back in a little T3 - Liothyronine to make a T3/T4 combo :

Some people can't tolerate T4 and need to take T3 - Liothyronine only :

Whilst others find their health restored better by taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.

NDT was successfully used to treat hypothyroidism for over 100 years and prior to Big Pharma launching the T3 and T4 synthetic options currently more widely available.

20 odd years ago all the above options were available for your doctor to suggest to you if T4 didn't restore your health and well being.

Currently your doctor only has T4 and likely those anti depressants to offer due to costs, rather than patient medical need and it has become something of a post code lottery and reliant on CCG budgets as to who and where can write a prescription for anything other than T4 through the NHS. and you need to be referred to an endocrinologist who may or may not see you as needing an additional thyroid hormone replacement.

You need is obvious and hopefully your doctor will acknowledge the science.

I was refused all other treatment options but my need was more mental as my cognitive functions were severely compromised and invisible but no less traumatic for me.

Thyroid UK the charity who support this forum hold a list of patient to patient recommended endos and specialist both NHS and private and this might help you find who you should, or shouldn't be referred to and currently appointments can be via Zoom so distance not necessary an issue.

Janet02 profile image
Janet02 in reply to pennyannie

Thank you so much for your post, I’m so sorry to hear of your own experiences, unfortunately, the more I read, the more I realise there are so many people in a similar position who are struggling to get NDT. I intend to contact Thyriod UK today and get a list of recommended endos.

pennyannie profile image
pennyannie in reply to Janet02

You may well find T3 - Liothyronine works for you, it does seem to be more widely used

I now self medicate and have settled on NDT but T3 also gave me back my brain !!!

I don't think the medical mainstream cover ' thyroid ' that well - as. why are we all here ??

I have read that Big Pharma finance the teaching hospitals so there is a vested interest to teach what they manufacture.

I think you should try the conventional route first, through the NHS system as you have other health issues that need medical support.

posthinking01 profile image
posthinking01 in reply to pennyannie

Hi there can I jump in here - my latest bloods show FT3 as 3.6 (range 2- 6) and FT4 is 13.6 range up to 22 - with your conversation figures given here am I on enough of both?

pennyannie profile image
pennyannie in reply to posthinking01

It's best to start your own post as this original poster will keep getting emails that do not concern them ;

P.S, Having just looked back at your history it doesn't apply to you as it is for patients on T4 only medication - and read you are taking T3 and T4 and steroids which likely makes everything more complicated.

posthinking01 profile image
posthinking01 in reply to pennyannie

ok tx anyway !

SlowDragon profile image
SlowDragonAdministrator

Virtually impossible to get NDT prescribed on NHS

Increasing numbers of patients are getting T3 prescribed alongside levothyroxine.

In England, 59,000 prescriptions for T3 in last year. Typically that’s 6 prescriptions per person per year. Searchable by CCG area. Some CCG areas are worse than others

Price of T3 dropped significantly over last 3 years

openprescribing.net/analyse...

Armour NDT ….only 2000 prescriptions in last year

openprescribing.net/analyse...

Before considering adding T3 or NDT you need all four vitamins tested and optimal, levothyroxine dose fine tuned and trialing strictly gluten free diet and possibly dairy free diet

Always stick on one brand levothyroxine at each prescription too

You could request trialing liquid levothyroxine, often gives better results

posthinking01 profile image
posthinking01

Hi sorry to hear this - are you under a hospital for renal issues as that is as important. As a renal patient my kidney function did improve after finally getting T4 - not much change with T3 though.

Janet02 profile image
Janet02 in reply to posthinking01

Hi thank you for post. I only got the diagnosis on Friday when my GP sent me a message. The earliest appointment I can get to discuss my health care plan is in two weeks. I’m unsure what path that will take though.

posthinking01 profile image
posthinking01 in reply to Janet02

How awful for you and what a shock - have you had kidney issues in the past that have gone on to this scenario? As unusual for it to just happen like that.

Janet02 profile image
Janet02 in reply to posthinking01

No, no previous problems at all. The only health issues I’ve had have been with my thyroid blood results.

posthinking01 profile image
posthinking01 in reply to Janet02

Well that is EXCELLENT news because if they are just reading your GFR levels (glomerular filtration rate) then this can be affected by being dehydrated at the time of the blood test - it is always better to try to drink fluids before the test - avoiding having to run to the loo every five minutes though as I did once. Your creatinine levels are also relevant - this is something the kidneys should remove during their filtering process - the GFR is how strong the filtering process is.

GFR's can go up and down - coincidentally I asked my renal consultant at last visit why my levels weren't as high as previously and he laughed and showed me them even lower the previous year and the chart was up and down - he said they are affected by all sorts.

do you know your GFR and creatinine levels.

I don't want to raise your hopes but try not to worry too much - agree it might be the shock of your operation on the thyroid - a shock to kidneys even. Do you know what your GFR and creatinine levels are?

If you can, for the moment to try to get your GFR up - no tea/coffee/alcohol for the moment as they all cause dehydration - just water and avoid the direct sun - keep cool in other words all to help your kidneys cope with what it needs to do for you.

Hope this helps. Please ask if you have any other questions.

Hylda2 profile image
Hylda2 in reply to Janet02

I only saw Stage 3A kidney failure on my notes. No one thought to mention it. Have now kicked up a fuss and have blood test every six months. Dr said nothing to worry about. 😢

Alanna012 profile image
Alanna012 in reply to Hylda2

Shocking!😮

Hylda2 profile image
Hylda2 in reply to Alanna012

It is as it’s now disappeared again! 🙄

Alanna012 profile image
Alanna012 in reply to Hylda2

Unbelievable. That's terrible.

CoeliacMum1 profile image
CoeliacMum1

So this is part of a scenario I’m trying to sort.I will try to find where I read the correlation of poor kidney function and thyroid, I will amend post with link if I find it.

I’m aware there maybe other factors as your scenario and it isn’t the same as mine- but it’s an area I’ve thought exactly the same, I’m struggling to get my kidney function better, regardless of being on Liothyronine (T3) a while now.

It’s certainly helped my hypothyroid myopathy though.

My creatinine levels are high therefore like yourself labelled with Chronic Kidney Disease (CKD)3a stage.

I’m on Liothyronine (T3) and only had one test improvement and it was when my conversion was better and it lowered it to stage2 CKD but however my last results my FT3 went lower than previously on T3, and my creatinine raised again so I think the correlation is there, just a bit stuck as I can’t increase my conversion.

So do try getting Liothyronine and let us know if successful in getting better results than me.

I think I need to get better levels of Vit D Ferritin etc.

I can only think this is an area to improve and see if conversion gets better.

Obviously this probably isn’t something in your case.

My FT4 & FT3 levels are still low but TSH is suppressed now 🤦🏻‍♀️ so no increase in meds probably decrease unfortunately as all chasing TSH.

I do have high thyroid peroxidase antibodies, it’s only ever been tested once, but my other thyroid antibodies were in normal range.

I’m looking and considering selenium and zinc magnesium supplements as heard they can help these antibodies.

I’m not getting any hyper symptoms but they want my TSH in better place.

Janet02 profile image
Janet02 in reply to CoeliacMum1

Very interesting. I will post again with an update when I know what options have been offered to me.

posthinking01 profile image
posthinking01 in reply to CoeliacMum1

Hi whilst I know selenium is so important for the thyroid - please be careful as it can store in the kidneys - also zinc can become a problem. OK if your kidneys are OK but be careful if they are a bit weak at the moment.

CoeliacMum1 profile image
CoeliacMum1 in reply to posthinking01

Thanks for that will look in to that.

So how do I know if my kidneys are weak?

Is it purely based on GFR?

I have read someone with high muscle distribution can have higher creatinine levels, why mens ranges are higher, high protein diet, dehydration can all be contributing factors.

I have had blood tests and scans.

I have no other symptoms or abnormal tests just high creatinine serum blood test no urine samples abnormalities and I do hydrate prior to test adequately.

Any links or info regarding this gladly appreciated probably DM these rather than add to this persons post please. 😊

posthinking01 profile image
posthinking01 in reply to CoeliacMum1

Will DM you as suggested.

posthinking01 profile image
posthinking01 in reply to CoeliacMum1

When trying to DM stupid question I daresay but it is asking for User name - and saying To - who is that how can that be me I am not writing to myself.

helvella profile image
helvellaAdministrator in reply to posthinking01

Type CoeliacMum1 in the space after To - as soon as you start doing so, you can expect to see a list of possible members. When the one you want appears, click on it.

Or click on the avatar/icon or name CoeliacMum1 and you will be taken to their profile. Then choose the [ Message ] button.

(I am using a computer - it might be a bit different on a phone or tablet but the idea is the same.)

Profile screenshot
posthinking01 profile image
posthinking01 in reply to helvella

Hi thanks for stepping in - yes I did that and chose their name from the drop down - but it did not move into the TO section so was worried would not be going to them.

posthinking01 profile image
posthinking01 in reply to helvella

Can I send you a test to see if the TO section just stays empty but actually gets to the recipient ?

CoeliacMum1 profile image
CoeliacMum1 in reply to posthinking01

I’ve DM’d you so you have link to message me 😊

helvella profile image
helvellaAdministrator in reply to posthinking01

You can - if you still need to. :-)

posthinking01 profile image
posthinking01 in reply to helvella

Am now in touch with the lady but still no resolution as to why the TO box did not pick up the person I was writing to. thanks for your help though. My other half is an IT person I will ask him if he can work it out.

Brightness14 profile image
Brightness14 in reply to CoeliacMum1

Have you got a thyroid?

CoeliacMum1 profile image
CoeliacMum1 in reply to Brightness14

Yes, my GP said it’s shot though 😂If this was posted for me to answer.

I have coeliac disease, Pernicious anaemia and hypothyroidism (Hashimoto’s) and poor conversion of hormones.

On T4&T3 medication.

My BP is good, Cholesterol good (that they don’t even check very often now) blood sugar is higher end of normal, but normal.

I’m on HRT transdermal & utrogestan, B12 jabs (every 3month).

I’m on ventolin & fostair as asthmatic since 15.

Only supplement is better you sublingual spray D3 & K2 … as my vitamin D status has recently dipped.

Brightness14 profile image
Brightness14

Sorry to hear about your kidney problems. My thyroid was removed seven years ago for the same reason. I was put onto levo for the first time and for 6 months felt unwell and for the first time in my life put on weight. I then joined this site read up and posted questions.I have been taking Thyroid s for seven years now and feel well at 76 years of age, with no kidney problems. If I hadn't listened to the brilliant advice on here I would still feel very ill.

Endos and GP' s just keep me ill. I have just moved and my fist visit to the GP to register I was given a prescription for a huge loading dose of Vitamins D. He never even asked me if I was already on it? Useless and dangerous too. When I got home I threw the prescription away.

Batty1 profile image
Batty1

Undiagnosed high blood pressure can cause kidney disease and as you get older its not uncommon so Im told to start getting kidney disease.

I was diagnosed as stage 1 kidney disease last year prior to that never been told I had kidney disease Im also thyroid-less and on T3 and T4 .

Litatamon profile image
Litatamon

Hi Janet,

So sorry to hear - that must have been a shock. I know they say that often once you're in one stage of kidney disease, that's that. Dire talk. Know it is not always true. Please don't let your head go anywhere, until you know why this has occurred.

I have one kidney, and my GFR dropped about 13 points in one year - my GP was not alarmed. I damn well was. And I knew everything was connected - lots of body parts suddenly struggling all at the same time.

Anyway I noticed that it - my GFR -went up to 71 from 58 right after my TT. I just went for blood this morning so I should have another reading . If it is on there it should give me more insight.

I am telling you this because mine might be completely opposite to what you are thinking regarding levels. And proof you can get out of the range you are in right now

You don't know the why. Your kidney could be struggling with one of your other medications, it could be indicative of another issue. Could be dehydration in the moment. Could be anything.

So hopefully I have given you some comfort. Here's to figuring it all out and a good outcome.

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