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.
Written by
Janet02
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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.
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
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.
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.
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.
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.
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.
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?
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.
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
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
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.
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.
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.
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.
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. 😢
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.
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.
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. 😊
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.
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.)
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.
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.
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.
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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