As many of you members will know I've not been taking the T4 teva the endocrinologist prescribed me on Dec 27th I did try it again, but again developed the awful side effects (she herself wrote in a report this lady is intolerant to both T4, T3 teva and other thyroid medication she as been on)I discontinued taking it on Jan 31st informing my gp of this and why I chose to do this.
My gp was soupose to call me today to discuss this, but the appointment as been cancelled, I was going to mention the vencamil Aristo T4 to try until I see the endocrinologist in june🤔 personality I would have thought I'd recive a quicker appointment than June because of the circumstances.
But the last 2 weeks have been weird, firstly I thought maybe it was the lack of thyroid hormone, which I guess some of my symptoms are, but I did a urine dipstick test last week and it appears my bilirubin is past trace, and so is my luckosites 🤦.. I know bilirubin is the liver, luckosites are white blood cells which indicates infection, I do have some loin pain in my back but not so bad, I don't think I've got a urine infection.. No pain on passing urine, no stinging, no raised temp I just feel very off 🤢
I've done it again today as I'm feeling sick, waiting to vomit but have not, obviously I was going to mention this to the gp to, could me taking no thyroid medication be causing it🤔
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birkie
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I know slowdragon I've tried several times to speak directly to a gp, but I can't get past the receptionist, I eventually got a email saying I would receive a pone call today, but recived a message last night saying "due to staff shortages your phone appointment will be now moved to the 6th of March, I've got a surgeon in Liverpool calling me sometime on the 6th March🤦 no time indicate as she's very busy, she calling to give me my 4D Ct scan results I had done last Wednesday, and I don't want to miss her appointment, but do need to talk to a gp in relation to the flipping thyroid medication 😡 honestly this is effecting my mental health 😩
As someone with ChronicUTI I would be fairly confident to say a UTI has flared up.
I don't have stinging when passing urine but I do get frequency, lower abdominal pain, feel queasy, bloated and a sore lower back...and fatigue.
I got caught out a couple of years ago when I attributed it to my T3 dose...I lowered it and suffered.
It took me a while to realise it wasn't my T3 dose but the UTI. Mine flares up regularly every month which I've read can happen when old/ infected cells are shed from the bladder wall and slosh around in the urine. That's when you get a positive dip test
I dip stick regularly and some days the urine can be fine at one point and later in the day on can be cloudy with leucocytes.
I fully sympathise, the UTI/ hypo combo causes the miseries....and you don't know where to turn. I'm hopeful I can track it now
A GP told me recently after a negative urine test to, "just wait and see"...-I knew the next day what was wrong. They are clueless!
I now have some Amoxicillin stashed away and as long as it lasts I just use it for 3/5 days and the problem resolves .....for another 3/4 weeks.
It is rediculous!
I was prescribed prophylactic antibiotics....one every day....but that didn't help much. Neither did Hiprex or D-mannose
UTI is a symptom of low T3 ( I'm on v high dose T3-only for Thyroid Hormone Resistance....self medicating)
Interesting book...Cystitis Unmasked by Prof James Malone-Lee.....
Your thyroid hormone levels/T3 really need to be correctly medicated birkie ...your medics are disgraceful
But talking about T3 is not medics forte...it beggars belief.
I've been diagnosed with primary hyperparathyroidism for the second time in my life, first time was 2004 with the watch and wait approach, I went on to develop kidney stones, utis, second diagnosis 2020 they tried the watch and wait again, but I saw a parathyroid surgeon who got me diagnosed in 2023, had my 3rd scan to identify the adenoma last Wed.
I keep hydrated, I can't stomach Amoxicillin they gave me it twice when I was in hospital passing kidney stones, and had colitis, I threw it back everytime.
They tried me on antibiotics for a month but again I just threw them back, I'm now wondering if my calcium as gone over range again, as they are the same symptoms as a uti, the last kidney stones I passed my calcium was over range with same symptoms also 🤦
Yes my gp and endo are treating me appallingly, I honestly can't believe they are not bothered I'm not taking any thyroid medication, the gp telling to pass the message on to me "it's OK not taking any thyroid medication" 🤦 because they are at some point ringing me about this (wed 6th ) I don't feel it would be worth contacting PALs, as the last time I was told "we can't do anything because your gp is dealing with it" 🤦
I have been having this problem since January last year . As you say, I believe FT3 dropping is to blame. At hypo diagnosis I had an FT3 of 6.5 (3.1-6.8) and had no UTI problem. Since it has now dropped to below 5.7 ish it appears to be a chronic problem.
I wonder if you have tried oil of oregano for this, and if it had any effect? I bought some but haven't plucked up the courage to try it yet. As I haven't tried it, it is not a recommendation. Rare adverse events cited are hypersensitivity symptoms, so not something that sounds appropriate for Birkie, as she seems very hypersensitive.
The only problem I have with the uti is I also have primary hyperparathyroidism, this as produced kidney stones and utis, when my calcium goes over range it can produce utis so I'm not sure if this is the case why I have bilirubin and luckosites in my urine. But not being able to take my thyroid medication on a regular basis can't be helping my overall health, I'm talking to my parathyroid surgeon tomorrow, I'm going to mention what's been going on in regards to thyroid medication, she's also a thyroid surgeon, see how she responds to me having no thyroid medication since January 31st 🤷
Is your vitamin D optimal? Low vit D can cause hyperparathyroidism....but I guess you know that
It's important to take vitamin K2 with vitamin D it helps take calcium to the hard tissues eg bones and teeth rather than to soft tissue eg blood vessels
The combo of vit D plus vit K2 could help reduce the risk of kidney stones
High doses of vit C can cause kidney stones
Has the presence of billrubin been followed by a liver health assessment?
Hopefully you will be back on thyroid replacement hormone soon...which will raise your FT3.
For good health every cell in the body needs to be flooded with T3 by way of an adequate and constant supply....without treatment your T3 must be low.
Your medics might do well to join up all the dots / symptoms to get an overall picture of your health issues, rather than treating your individual symptoms
I'm taking a small dose of vitamin D as my calcium is sometimes over range, and taking vit d in large doses can cause the calcium to go over range causing bad symptoms, an endo would only give high dose vit D if the calcium was low (secondary hyperparathyroidism) it's a fine line 🤦.
Im hoping the parathyroid surgeon as some answers about my 4DCT scan I had last Wednesday 🙏..
As for my surgery joining the dots.... Well that's a laugh 😂😂😂 you can't get an appointment to see them, and if you manage to speak to one it's always a different gp and you've to try explaining everything again 😡 that's why I'm going round in circles with this surgery 😡
I've got a phone appointment with the gastro on the 9th... Wonder if my bottom will fit down the phone line🤣 how on earth is he going to assess me over the phone? How can he see what I'm passing when I'm on the thyroid medication? (💩 photos on phone) the NHS are a joke😡
Thank you....didn't know about oil of oregano for UTI so have done some reading. It sounds positive and seems ok with thyroid hormone if taken an hour or so apart.
Some of the soft gels are soya based and that can affect absorption of thyroid medication.
Just about to order some....not happy about taking a lot of abx. Been taking them on and off your years....now diagnosed as ChronicUTI! Argh!!
Hope springs eternal....I'll let you know (eventually!) how it goes!
I agree not a wise choice for birkie unfortunately.
I haven't taken any as yet, but it is liquid drops that I have bought that you drink in a glass of water. It is pure food-grade essential oil of oregano-no soya. The make is Spring Blossom Superfoods. Fingers crossed, if you try it.
The difference in your urine in the course of one day where it is okay one minute and not the next, with me ,seems to be that when it smells (like raw meat in a butcher's shop), it is protein in my urine. This happens when I eat dinner which is protein (meat, chicken, fish, lamb, cheese etc. I believe I must have nephritis, which causes you to pass protein in your urine. My maternal grandmother died at the age I am now from nephritis and myocarditis, and my mother's brother of the same (aged 51)- both before I was born. I passed blood in my urine last January and that was the start of it. I had taken one drop of Vitamin A, retinol palmitate for 6 days before this happened. This January I took one turmeric curcumin tablet, and coughed up blood and my nose bled. Hence my hesitation to try the oil of oregano which I have bought, as I believe trying Vit A and then turmeric curcumin caused me bleeding problems, and oil of oregano sounds quite potent stuff.
I was given amoxicillin 9/1/24 which cleared it finally-but it is back again. In the course of the full year that I had the UTI , two other antibiotics failed to clear it. The lab tested my urine the first time and said I had e coli. The second time my urine went to the lab it supposedly was clear. The G.P . says Amoxicillin doesn't clear e coli and it wasn't until I had a chest condition that I was given Amoxicillin. For a full year I was getting up twice in the night to urinate, when I normally don't need to. The Amoxicillin , however, knocked that on the head, but seems to be starting again. The smelly urine is the tell.
Someone on the forum previously said that when they send urine to the lab they tend to identify one problem (in my case e coli) but fail to test long enough to pick up other infections present.
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Blood in urine and tonsillitis 
Iodine urine test do's and dont's?
Worried over newly diagnosed with over active thyroid.
Stopped T3, advice appreciated on next steps please
