Blood tests of every conceivable liver / kidney / other flavour
Urine sample tests (sometimes comes back positive for having white blood cells in, sometimes bacteria)
Blood tests for diabetes mellitus
X Ray of mouth
and
STI tests
All (except the urine sample results I mention) came back negative.
If I drink any alcohol / eat lots of sugar I wake up the next morning with a far worse dry mouth, even if I drink litres of water. Urine has oily film on it and often smells fruity. But tests for diabetes are negative.
Is this what candida looks like? Or is it something else?
My T3 is better regulated now than it’s ever been, and this problem started a year ago.
Thanks for any guidance.
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Looking back on your old posts your ferritin was very low. Your folate could be higher as well. Most people report feeling better when foalte is at 20.
Once you have FT3 results and FT4 on your current dose after 6-8 weeks of consistent dosing then it's time to re assess. Your current symptoms may well be due to under replacement and low vitamins even.
Have not seen you on the forum for a bit. Welcome back. I have had a few breaks myself. I have had a quick look at humanbean references and my thoughts are it’s a metabolism issue. AND what is our illness but a metabolism issue? The list of symptoms, especially the ones doctors want to be deaf to, are of extreme importance to us. You have had checks - don’t you think sometimes we are almost too observant with this illness? I call it monomania. Nobody needs to take offence here reading this. It’s my observation. It’s not a word in normal use and now I am so wary of doctors I would not dare mention it to them. If they just gave some semblance of listening and tweaking our meds properly we could let some of this stuff go. One of the many things I have learned from my foray with T3 was the changes in metabolism issues. Peeing! I have hardly peed during the day for about 18 years that I am aware of. Nighttime a different matter. Still not much (leading sometimes to UTIs) but very often disturbing what little sleep I get! During my ‘experiment’ I was peeing like a racehorse. My skin has lost some of that tightness. That being unable to pinch it. It’s still full but a dramatic change on a few very small doses, it is a remarkable change. Our fluids do not work properly in our bodies. Dry mouth, dry eyes etc. Much of our fluid seems to be trapped where it is of no use. AND PS I get oily urine too and have wondered. Back to it all being very much a metabolism issue. Food not properly digested and/or a metabolism unable to make use of that which it is meant to deal with. My advice is still get your T3 in order and keep at it. I have had to let it go temporarily because I made such a hash of it. My sister says “Everyday is a school day!”
Sorry to hear that no news is not good news, humanbean . Are you on the mend or still in the trenches? And can we help with anything?
And I love the racing horse analogy, arTistapple . Has oily urine been a T3 phenomenon or pre-T3, too?
I don’t have the sustained memory power to be monomaniacal, nor manic, nor even a plain vanilla maniac! But I understand what you’re saying. I have met many specialists who refuse to consider symptoms from body parts not in their specialism. I imagine that somewhere there are garages who will only look at carburettors / exhaust pipes / ABS brakes in an MOT and not at the full vehicle, but I’ve never found my way to one of them. Doctors who screen out symptoms that aren’t immediately obvious, I’ve met a few in the past year. Patient heal thyself! I concluded - and here I am.
It’s lovely to hear from you both again.
Are there ever Health Unlocked thyroid conferences or annual gatherings to look ahead to?
Oily both before and after T3. Many years standing. Have you tried the D- Manoose treatment? I can’t recommend it too highly. If you have tried it and it did not work - by taking it as a way of keeping infection at bay - only then would I consider the method suggested in the Guardian article. Like other things associated with hypothyroidism (e.g.chronic kidney disease) there can be faux (for want of another word) illnesses associated. A picture of some illness you don’t actually have because of the underpinning of hypothyroidism. I must admit I always try something less drastic first.
Thank you. I saw it today in Boots and - it being an expensive time of year - baulked at the price. I will have to swallow my money-saving drive and invest in the stuff.
Your approach makes a lot of sense.
Do you have any theory as to why it seems oily? I had an ultrasound of the urinary tract that showed there’s nothing structurally wrong, as you may also have done.
I do have a theory but it is only a theory. We are pretty observant because we ‘know something is wrong’. We are tuned into whatever might be wrong - all the time searching for answers. You may not have noticed but Pooh is another substance that can be over oily. It’s excess stuff that the body normally uses for metabolism purposes and normally gets rid of by excretion but hypothyroid metabolism is iffy. Many people’s sweat is even oily. These are natural processes. Most people probably don’t notice because they are ‘well’. Digestion is a prime area of ‘not working’ for hypothyroids so excretion takes up a lot of the slack. Excretion has protective qualities. Mucin I think plays a part in this too. It certainly holds a huge amount of fluid possibly preventing the ‘normal’ amount to be excreted and causing a dehydration in an area that especially needs it. Even drinking more water may not address it as that process is foiled by mucin production. We travel a lot more than we used to. Hot temperatures create dehydration and strangely enough even women in hot countries get lots of UTIs, when you think they might be used to it. That’s why I think a lot of hypothyroids get UTIs. There just is not the right amount of fluid and the PH gets messed with. Correct PH is critical to protect the tubes and bladder. Strictly speaking it may not be infection in long term UTIs just wrong PH. This would explain why ulcers can be found in the bladder and urethra. Wrong PH due to dehydration, infection and/or over treatment with antibiotics - I know that doctor mentioned was associated with lots of antibiotics - but again I would be inclined to try alternatives first. I hope this makes sense. I lived in Saudi Arabia for a while and UTIs were a particular nightmare. Keeping hydrated and having undiagnosed hypothyroidism was very difficult there, wearing black bags and constantly sweating. Not good for the system under any circumstances. Lots and lots of women on permanent antibiotics there, which are just bought over the counter without prescription. Once the balance has been changed it takes a bit of work to get it back. However don’t take any of this onboard until you address it. Honestly the D-Manoose I mentioned was so helpful, even with symptoms I did not think could be helped. Thank Charlie-Farley for that!
Fabulous! Oh Tistapple I’m so thrilled you too have found it beneficial. I confess I was sceptical at first but so relieved when it worked for me and no ABs for at least 5 years now. I did watch a lot of testimonials on YouTube before trying- HowNowWhatNow if you try go for capsules not pills - I bought pills once they were so huge barely able to swallow! You can get a powder too but capsules go down readily and quickly.
Geogeor after all my UTIs I have only had to use the D-Manoose twice. I did balk a little over the price but I was SO pleased with the result. Many years ago in my search for a ‘broader’ help for whatever the hell was happening to me, I came across this stuff. I think it was for fatigue (most likely) but I could not get it anywhere. So when Charlie-Farley mentioned it and where to get it, I jumped on it. You will find it online. From somewhere in Yorkshire. I will get back to you later with more details.
I’ve so far bought a packet of 14 once a day fizzing tablets. I resisted the beetroot juice someone else here recommended. £5 a bottle in Holland and Barrett felt like a vanity purchase.
And thanks to everyone here I could do an entire hour long show on QVC purely selling important supplements and over the counter medications and portions that help conditions common to thyroid health problems. Any takers?
sweetcures.co.uk Sorry can’t give a proper direct contact. Don’t know how!
[ Edited by admin to remove the extra space (between sweet and cures) and remove the full-stop after uk. These things all prevent a link from working properly. ]
As required, not every day. I use ‘natural answers’ d-mannose because it is a capsule, so easy for me to swallow. I haven’t had a urine infection for years! If I get a tingle (you know) I take a d-mannose, three times a day for a couple of days and drink plenty to flush. I think there was a vicious circle between taking ABs for a urine infection, which then left me open to thrush which I would clear but would leave me open to another urine infection, more ABs and so it went on for decades. I broke the circle, but in amongst this stopped contraceptive pills and I still wonder to this day does the artificial hormone imbalance to prevent pregnancy- does this too feed into problems with thrush or UTIs or both. I’ll never know but I have my suspicions!
Your HbA1C level is very healthy and you are miles away from being pre-diabetic or diabetic. Pre-diabetes is diagnosed with a result of 42 up to about 47 or 48.
From your second list of possible conditions (apart from the “sinister” conditions like cancer / swollen lymphatic vessels, that is), the ones I wonder about / that seem more on target are: UTIs and interstitial cystitis.
There was a doctor called Prof James Malone-Lee (who died in February this year). He developed methods of curing UTIs (privately) that didn't respond to normal methods used by the NHS. The NHS wouldn't follow his methods for reasons of their own, probably cost.
You might want to research him and see if anyone is following in his footsteps.
This is an article about him and his work from 2019 :
This is fascinating. I dimly remember reading this when it came out .. and had totally forgotten about it.
I’ve experienced the same rhetorical faultline that this same doctor exposes in my son’s own medical care. My son always had UTIs that only showed up when his urine was cultured and not otherwise. So his paediatrician maintained that he didn’t have any urinary tract problems, despite all the evidence (symptoms over time and cultured bacteria) to the contrary. Malone-Lee says - it seems to me - that doctors that argue this are wrong because the bacteria can hide away.
An American friend uses capsules she makes up herself - from a chemical product she obtains Stateside - to rid herself of UTIs, because none of the antibiotics work for her but this stuff does. I wish I could remember the product she uses, it’s brutal stuff.
How do you manage to be on point in so many different medical languages at once?
How do you manage to be on point in so many different medical languages at once?
To be honest, I mostly research things that have relevance to me personally, or just occasionally something will catch my eye on the news or from someone else's posts or I spot something that interests me when I am researching.
Doctors have nearly killed me a couple of times, and have dismissed me hundreds of times throughout my life. I don't think I have any choice other than to treat myself as far as I possibly can because doctors don't take me seriously. I believe, but can't prove, that I was tarred as a drug-seeker and a hypochondriac in my teens. I'm now in my 60s. That label from my teens has destroyed my career, my fertility, and also my quality of life for decades.
There are thousands of medical things I know absolutely nothing about.
But I also keep a LOT of bookmarks/favourites for the things that do interest me.
"A1C tests can be affected by changes in red blood cells or hemoglobin
Conditions that change the life span of red blood cells, such as recent blood loss, sickle cell disease NIH external link, erythropoietin treatment, hemodialysis, or transfusion, can change A1C levels.A falsely high A1C result can occur in people who are very low in iron; for example, those with iron-deficiency anemia NIH external link. Other causes of false A1C results include kidney failure or liver disease.If you’re of African, Mediterranean, or Southeast Asian descent or have family members with sickle cell anemia or a thalassemia NIH external link, an A1C test can be unreliable for diagnosing or monitoring diabetes and prediabetes. People in these groups may have a different type of hemoglobin, known as a hemoglobin variant, which can interfere with some A1C tests. Most people with a hemoglobin variant have no symptoms and may not know that they carry this type of hemoglobin. Health care professionals may suspect interference—a falsely high or low result—when your A1C and blood glucose test results don’t match."
"In some patients, A1C can be falsely low. Any condition that shortens the life span of red blood cells, and therefore the length of time hemoglobin is exposed to glucose in the bloodstream, can falsely lower A1C. Examples include hemolytic anemias, hemoglobinopathies, splenomegaly, blood loss, blood transfusions, chronic liver or kidney disease, and some drugs (4,5).Drugs that cause subtle hemolysis without anemia may interfere with the accuracy of A1C measurement (6). Reported examples of such drugs include dapsone, sulfasalazine, ribavirin, and antiretroviral drugs (4). There are few data from randomized, controlled studies on the subject of drug-induced hemolysis causing falsely low A1C levels; thus, there is little information about the prevalence of this phenomenon."
Thanks for the detailed look at HBA1C. I will look into it more but I’m leaning more towards a cystitis / UTI reading of my symptoms. I am also going to stop having sugar and alcohol for a few days just to see if it improves things.
Fruity smelling urine is a pretty strong indication of diabetes. I wouldn't rule it out. Ask for a fasting blood glucose test, apparently they're more accurate.
Having oily urine with excess proteins is a sign of kidney disfunction that hypothyroidism can cause. Remember even with optimal thyroid hormone labs we can still be hypothyroid on a cellular level.
Zazbag is correct in saying HbA1c can be misrepresentative of true glucose levels because is influenced by haemoglobin and RBC health. Do you have iron issues? Buying a home (finger prick) glucose monitor and taking regular readings would be more informative. Best times for testing are fasting and then 2 hours after eating, and record for several days.
Do you have high BP which can be both a cause and consequence of CKD? What kidney tests have you had? Can you post results for GFR and creatinine? How elevated was albumin in urine? If you are losing albumin in your wee, the chances are you are also losing much higher levels of thyroid hormones than is normal. This would be reflective in your ‘total’ labs (not always measured) that don’t depict the amount of hormone you are medicating. Have you had ACR (albumin to creatinine ratio) worked out? Have you had BUN (blood urea nitrogen) tested?
I didn’t suffer UTI’s but did have proteinuria, low GFR and blood glucose issues before being diagnosed with Hashi, all of which reversed after becoming optimised on thyroid hormone meds. I also had a kidney scan (no dye) that evidenced no lasting damage. Sugar issues righted themselves as cortisol/DHEA rose and I manage continued high/latent BP firstly with pills but now with beetroot juice.
My kidney numbers - GFR etc - that I’ve seen are all normal. I don’t know that albumin in urine has been measured. ACR and BUN - I think not done but I will check.
I also have itchy skin from time to time - scalp and, when urine problems are at their worst, backs of calves and lower back. I think this can be a diabetic issue too.
I bought a BP monitor earlier this year because my BP has been high when tested by GP / in A&E a few times. I tested it daily for a few weeks to get a baseline - it ended up being OK when tested at home, even if higher than ideal - and will start testing again, to see how it is.
I am heading out for the morning with family so will post the kidney numbers I have later.
Yes I am iron deficient. When last tested, a month or so ago, my ferritin was 10. But HB still in the 130s because I had an infusion in 2022 (when my ferritin had reached 3). I don’t tolerate oral iron at all so I am pushing to get an infusion but nothing is happening fast. I have just bought the Iron spray (from the same people who make the Vitamin D spray) to see if it’s gentler.
What are the “total labs”, please? What does this measure?
I have spent so much money and time on bits of medical kit but if I have to buy a glucose testing kit too, I guess I have to!
What are your recommendations for a good / affordable / small piece of testing kit, everyone?
Yes, there are certain juices rich in phenolic compounds that have been scientifically proven to reduce high BP.
I much prefer Active-Edge Montmorency Cherry juice but it's so sweet I alternate it with beetroot juice and have reduced BP tablets. I actually stopped tablets for a while but then had a funny turn on holiday so have resumed a low dose.
Pycnogenol has remarkable reviews too but I've reduced my 'supplement pill' intake and refuse to take any more so it's only powders/liquids from now on in.
When I said ‘no more supplements’ I meant no more pill-supplements in addition to the few I take as I've managed to whittle them right down. I have previously had periods of taking vast amounts of pills, particularly when chelating after amalgam removal.
I go against the forums ethos regarding multivitamin combo’s. I believe in general the research regarding how nutrients may negatively impact one another refers to large doses taken when addressing an actual deficiency. After all we don’t separate our foods to gain individual nutrients when we eat.
Once deficiencies are rectified, genetic impairments, certain gut/health conditions, and soil depletion may dictate we need ongoing supplementation of certain nutrients but not the large amounts in individual doses. I am presently supplementing a Seeking Health multivitamin chosen to address my individual quirks, ie no iron and non-methylated B vits as I additionally supplement a powered form of choline (giving methylation support). I also make up adhoc smoothies with powered forms of Vit C, magnesium, marine collagen, protein, lecithin, etc.
One of the problems with taking too many separate supplements (aspiring to) is that I simply don’t get around to taking them every day. Whereas my kids - reliably - take a multivitamin a day, I often forget to give them the cod liver / fish oil liquid I would ideally also give them. And so it goes for some of my own.
What do you take instead of iron supplements, if anything?
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