I have a sad story to tell about the last 6 months. I had a severe kidney stone infection (and UTI) in the spring. I was slowly doing better on my new thyroid medication (Erfa), but the infection caused bacteremia/urosepsis and I developed severe confusion. I had started taking my thyroid medication at night because it was too hard to space my antibiotics out from my food and medication. The combination of these things resulted in me taking a DOUBLE dose of my prescribed Erfa for two months. The symptoms of my kidney infection were very similar to the symptoms of hyperthyroidism that resulted from such a high dose of medication (light headedness, sweating, chills, confusion etc) so I did not clue in until my June thyroid results came back. I stopped taking the double dose in early July and retested a month later in early August and September. I don’t want to cause confusion by posting too many results, but I’m happy to share any of my other results for the other months if someone thinks it would help them give better advice. I am very scared because I developed elevated liver enzymes from this debacle. My liver results for September just now were 44 ALT (reference range says it should be less than 35). They have come down since August (67 ALT – range less than 35), but are still not quite normal. My liver enzymes were low before all this as I tested them in March. I need surgery to remove the infected stone, but probably can’t have surgery until my liver enzymes are normal. The kidney issues are making it difficult to remove wastes from my system so it’s probably harder for my liver to improve.
Mainly, I just want to know if my thyroid results below are okay or if I'm still hyperthyroid from taking too much medication. If I am hyperthyroid, it might make it harder for my liver to improve. My Free T3 and T4 are at the low end of normal and (I think my TSH if only slightly low)? Before getting COVID, I felt very good and didn't have any symptoms of hyperthyroidism. If you have anything else to tell me that you think might help, please let me know.
I’m reeling from all these events and would be very grateful for any help. I’m feeling very vulnerable and currently also have COVID so please be as kind as possible.
Thank you!
In September two months after double dose of thyroid medication – my latest thyroid results
TSH 0.04 mlU/L
Free T3 3.75 pmol/L
Free T4 12.2 pmol/L
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The-Wasp
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Do you have the ranges for these blood test results please ?
On first glance these results look low and definitely not over medicated / hyper .
With NDT the results do not ' express ' themselves the same as when on synthetic T3 and T4 treatment options and once optimally medicated we wound expect to see a TSH low / suppressed - with a T3 proportionately higher in it's range than that of the T4 reading.
Each grain of Efra contains 8 mcg T3 + 35 mcg T4 :
What dose was prescribed for you ?
Do you have an inflammation reading there ?
When taking any form of thyroid hormone replacement containing T3 you will likely see a suppressed/low TSH - this does not mean you are over medicated, overactive or hyper -
We need to track on your T3 reading and if that is in range - 10/12 hours after ingesting your Efra which is roughly when this medication peaks in the blood - you are not over medicated.
Quite where your T3 needs to be within the range is of course down to fine tuning and slowly adjusting by 1/4 grain increments up or down weekly or fortnightly, depending on how you feel and appreciate you are not well anyway so things have become a bit confused.
When the body is struggling with illness conversion of thyroid hormones will be down regulated as your body will be diverting it's energy to repairing itself.
Your vitamins and minerals look ok when I looked back at your previous post but couldn't see B12 - but suggest you ask for your ferritin, folate, B12 and vitamin D run again and we can advise you as to where these need to be in the ranges to support and utilise well your thyroid hormone replacement.
Yes, my pelvic floor strength plummeted almost immediately and I felt extremely unwell. I was not on Erfa very long and when my pessary fell out and I could not go on a walk, I was extremely hypo, he only had me on half the dose I was on in January. I realize now that I somehow forgot to show you those results. I'm so sorry! I am firing on no cylinders right now. I'll go hunt down those results. I got the UTI on the ver low dose of Erfa. I don't want to muddy the water too much, but I had mesh removal surgery in 2020. I had a catheter for one week following surgery and that's what caused the stone to get infected. For a year following surgery I lay on my yoga mat feeling dizzy with extremely low blood pressure and cognitive impairment. I was sweating and shaking with haematuria and a strong ammonia smell to my urine. The I asked for a 24 hour urine test and it revealed that I have a triple phosphate stone. Drinking more water was the only suggestion by my GP which wasn't feasible with the incontinence because I didn't have my pessary yet. It was a long process of trial and error online until I found a pessary that worked. Now, going on antibiotics helps over time, but the UTI will come back because the antibiotics cannot penetrate the stone. All these postulations are based on Pubmed studies. When my GP told me I had a triple phosphate stone, my GP told me it was normal. I've had virtually no help to figure all this out and if I didn't read Pubmed studies I think I might've died. Now I need kidney stone removal and all the surgeons in the UK want to use stents and catheters as a matter of course even though the Pubmed studies clearly say that it can cause chronic UTI and/or struvite stones. I'm so exhausted from fighting all these life and death battles with the medical establishment and receiving only useless advice at best. I really appreciate the help from this site! I'd feel so alone without it so thank you Slow Dragon. You have a rare and beautiful soul. I'll go find those results from the time right before my UTI came back. I hope this long message does not impose on you.
They want to use stents and catheters mostly because they don't want you to wake them up in the middle of the night unable to urinate. It's a relatively rare occurrence though and no stent or catheter actually REDUCES emergency room visits. Both the American and European Colleges of urology advice against the use of stents and catheters on a routine basis. Nonetheless, 75 percent of all surgeons still do it because they think it is more convenient. You need the 300 pound consult to figure out if they use them routinely. All six I have spoken to so far do. Worse still, most of them become almost shrill when you mention the studies. One was kind, but refused out of hand. One asked me if I'm drinking enough water even though water will do nothing for a struvite stone. Medscape recently posted an article that women are so desperate that they drink so much water that they sometimes die of low electrolytes. I'm sorry! I'll be quiet now. There's nothing to do about it. They can harm us and expoit us and there's nothing we can do about it. I can't imagine how I'd feel if I could not go private. But I'm getting there. My bank account is severely depleted.
YES! I found the results from March when I was basically on HALF the dose of Erfa that I had been on for Levothyroxine and Liothyronine for the past thirty years. A quick google search when my pessary fell out confirmed he started me on way too low of a dose. It's one of the first times I didn't check a doctor's homework since the mesh removal because his credentials were so good and he talked such a good game.
On March 15th when my endo put me on a super low dose of Erfa to start
TSH: 9.0 mU/L Reference Range: L 0.27 to 4.20 mU/L
Free T3 3.55 Reference Range: 3.1 to 6.8 pmol/L
Free T4 11.2 Reference Range: 12.0 to 22.0 pmol/L
A quick google search revealed that he should've started me on the 60 mg dose twice per day at a bare minimum. All this has me feeling even more traumatised and vigilant . I feel like I can't find a good doctor who reads Pubmed studies in any of the areas I need help. I've had 6 300 pound consults for the kidney stone a they all want to use stents and catheters. Pubmed studies say stents cause a reflux action that can cause a struvite stone in addition to giving the bacteria something to climb on to get to your kidney. There's a surgeon at Mount Sinai that points out the issues with stents and catheters, but he can't read the images from my 1000 pound CT scan. They don't have the correct software to open the links. I sent them the one copy of my DVD, but DHL tried to deliver it out of office hours. The staff will not contact DHL or lift a finger to help. The policy at DHL is that the consignee needs to rechedule the second delivery, but they won't. This has gone on for a month and I now have the haematuria and ammonia smell back, but with elevated liver enzymes, my specialist can't prescribe antibiotics so the symptoms I have right now might partly be the infected kidney stone acting stone acting up. I hope he is enjoying all my money because I will be bankrupt before my kidney stone is out. I don't know why I trusted him when I trust no doctors. I was 1.5 years with the UTI symptoms after 6 months on antibiotics prescribed by the Chronic UTI clinic in London. I don't want to take the antibiotics anyway because they give tendon pain in my ankles, but now I probably can't take them anyway because of the high liver enzymes.
Oh no! I forgot the reference ranges. Do you need them for each test result? All, but the September test was Medichecks. It's only the last one that was Ble Horizon.
We also need to know how much you normally take. Depending on that, a double dose might not be that high. But, you do look under-medicated at the moment.
Remember, it's not a low TSH that indicates over-medication. It will be low anyway when taking NDT/T3. It's well over-range FT3 that shows over-medication.
Thank you so much Greygoose! Very kind of you to help and give such a thorough answer. The additional info is as follows: TSH 0.04 mU/L Reference Range: L 0.27 to 4.20 mU/L
Free T3 3.75 Reference Range: 3.1 to 6.8 pmol/L
Free T4 12.2 Reference Range: 12.0 to 22.0 pmol/L
My dose is 60 mg twice per day
I'm having terrible brainfog so I'm sorry I didn't know all the info I was supposed to include. I also have quite a headache
OK, so you are very under-medicated now. Which would explain your symptoms such as brain-fog and headache. So unlikely that the double doses did you any harm.
I actually felt great on the double dose, but my liver enzymes did go up to 67 ALT. So I gather it was at least a bit high. Thank you so much! It's so kind of you! I have to change specialists because there have bee other things which are actually worse, but it would take too long to explain. I'm sure you have better things to do
Interestingly, I had HUGE improvement in my pelvic floor strength when I was on the super high dose of Erfa. It was the first time I had any improvement in my pelvic floor strength after 10 years of doing exercises 3 times per day. I tried everything. Of, course, none of the pelvic floor physios or GPs or specialists murmured a whisper about the possibility that this might be caused by my thyroid. I bought so many gadgets and felt so low that it must be all my fault. It was just crazy when my pelvic floor strength went from 70 to 400 in one day! Then I read a Pubmed study that talked about hypothyroidism weakening you pelvic floor and causing UTI's because you urine flow is slow. Sorry if this is tmi, I'm just hoping it will help someone who has the same issue. My specialist told me to immediately go back to 60 mg twice per day without tapering. This resulted in not being able to walk, nausea, severe confusion, chills, fever, extreme sweating etc. so I suspected the dose might be somewhere in the middle. I understand that there may be zero literature about what to do if someone does anything that dumb, but when I told him he said I MUST NOT TAPER. I did and I was off the high dose in a few days without much suffering. If they don't know, they should at least listen to us. When I cut the dose, my pelvic floor strength went back to 70. I was so depressed, but FINALLY I know why this happened to me. I was made to feel that the UTIs and the weak pelvic floor were all my own fault and I was just not doing my kegels right. Thanks for listening! I will ALWAYS go to Pubmed whenever I have a new problem they will just repeat the guidlines. It's very upsetting. I'd pay much more to be treated by a researcher. Everyone seems to be about twenty years behind the research when it comes to women's health. I hope it's okay to say that. Maybe it's not just women's health, but I believe it is worse and they do not research our health problems as much. That's why we are left twisting in the wind so much of the time.
Do you get your NDT on the NHS? If not, I'd dumpt that stupid, useless endo and self-treat. He has no idea what he's doing and sound like he's going to keep you sick if not actually make you worse!
Yeah I realized that in August, but I've felt so unwell and it has been challenging to find a surgeon willing to try to avoid stents etc that I haven't found the One. I could go on and on about this joker. In general, he seemed mostly concerned with getting the most money out of me..When I took the double dose of thyroid pills, I ran out of my prescription early so he charged me 10 times too much for my prescription because he said it was considered an "emergency email".. The next, but this time he was trying to sell fingerprick tests and charged me for an emergency prescription because he said he no longer accepted Medichecks test results. It takes me a month to reschedule the nurse and I'd already done the test with a nurse. He also wants you to almost run out of medication before you order a refill, probably in the hope you'll need an urgent prescription. So greedy.
hello - on a slightly different note - have you considered trying nettles/ nettle tea for the kidney problems and also aromatherapy (juniper/ cypress). It might be worth a consultation.
I have, but antibiotics have a hard time reducing the bacteria on a struvite stone. None of herbal stuff seems to help. Juniper extract might help a teeny bit. It's in my E UTI drops. and I take it 3 times per day. I have Nettle tea, but it didn't seem to help. I know there's some evidence that it works for an uncomplicated UTI. Now that I've been off the antibiotics all the symptoms are slowly coming back despite the Juniper. This is always the timeline for the symptoms. Soon I will be a mess with haematuria, shivering, sweating, extre pain, dizziness etc. I am in such despair. Sorry to be so depressing 😞 Thank you for taking the time to answer! 💜
Seems your having a really tough time, 🤗.. I have no thyroid and are on T3 I'm having bad gut issues with it, but that aside.. I have had, and passed kidney stones for several years, my hospital admissions due to the passing of these stones never yielded any real cause, my liver enzymes were raised to and I have trouble with my pelvic floor (leakage) I'm alway passing urine, I spend more time on the toilet than I care to mention 😔 especially at night.
I started noticing my calcium was over range on my thyroid blood panne I asked my gp to send them to my endocrinologist, the endo did calcium and parathyroid hormone with vitamin D, (over range results) after 3 years of struggle with my gp and endo who just wanted to leave me passing stones I had to go private to see a parathyroid surgeon, and now I have a definitive diagnosis of primary hyperparathyroidism which kidney stones are one symptom, this may not apply to your situation, but have they done a calcium blood check. ❤️
What a sweet message! Thank for the great info and all the hearts 💗 Really cheered me up and it's something to consider. I did a well woman test in the spring and I don't remember anything about calcium being mentioned, I will triple check as soon as I'm able to peel myself off the sofa. Yes, it's hard to get anyone to be remotely proactive about stones. None of the surgeons I spoke to in the UK do a 24 hour urine test. The only guy that does is at Mount Sinai in New York. I have to fill in the intake forms for the Mayo clinic to find out what they do there. It's an uphill battle to get proper treatment. It takes lots of luck, lots of research and lots of patient to patient help. Thank you for your kind help, lovely! I will look into it!
I can't offer help with your results, but perhaps I can open your eyes to something else. A few months ago, I was suffering severe kidney pains and uti's. Night sweats, bone pains and urinating blood. I am hypothyroid. I went to the hospital and they ran several tests. My uric acid was high. My kidneys are full of uric acid stones. I was diagnosed with gout. I had 2 large stone blocking my urine flow in my urethra. This caused edema on both kidneys. I asked if it's possible these stones were blocking my urine flow for 2 years since my kidneys have been involved for 2 years. I was told yes which that can also cause sepsis or other bacterial infections. I now add sodium bicarbonate to every bottle of water. I have changed my already strict diet to a more alkaline diet. I recently passed a 7.6mm uric acid stone and a 5.2mm stone. Instant relief.
Yes, in some ways similar to my situation. I'm sorry for everything you've been through. It sounds like the sodium bicarbonate is working wonders for you. I'm currently taking apple cider vinegar, but haven't had any effect from it yet. Tastes pretty good when diluted! I take it in the morning with my thyroid medication because it helps you absorb it. I haven't tried sodium bicarbonate yet because I was worried that it was high in salt? I'm not very clued in yet, but there's 5 different types of stones and I think I have a struvite stone (according to my GP from Canada). I have lived here for just over a year.
I use 1/4th of a teaspoon to a 16oz bottle of water. It still tastes nasty. My nurses said cherries will lower uric acid as well or lemon water. Hopefully you can get your kidney issues worked out soon. If you decide to use sodium bicarbonate and you can't handle the taste, Amazon sells it in a pill form. I know thyroid disorders can affect the kidneys as well as gout. I've been trying to put the puzzle together since my hypo diagnosis 2 years ago. My doctors don't have a clue. This site has seriously opened my eyes. I just ordered a product called Chanca Piedra Extract Powder. It is supposed to get rid of kidney and gall stones. I haven't tried it yet.
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