Are bladder problems common with Hashi's? I've had 'UTIs' since 2012 which tended to flare after sex, so I take a single dose of antibiotic the morning after. Developed a 'UTI' three weeks ago - ended up in A&E at 2am as third different antibiotic failed to treat and I was passing blood/vomiting. Then my GP said there's no bacteria in any of the samples they've tested since 2015 - lots of leukocytes/white blood cells though. Each antibiotic seemed to help - the pain and urgency went so I'm really confused. I've been referred to urology urgently. I take 100mcg thyroxine one day, 75mcg the next (GP said TSH was raised last blood test). I am very debilitated daily, severe fatigue, pain etc, since 2014, had a private thyroid panel done and my - no treatment, just symptom management.
Bladder problems : Are bladder problems common... - Thyroid UK
Bladder problems
Yes UTI increased risk, especially if under medicated thyroid wise
How long have you been on 75mcg and 100mcg alternate days
Which brand of levothyroxine are you taking
Do you always get same brand levothyroxine at each prescription
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Looking at previous posts you have Hashimoto’s
Are you on strictly gluten free diet or dairy free diet
If not get coeliac blood test done BEFORE considering trial on gluten free
Recommended that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
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 then cheapest option for just TSH, FT4 and FT3
£32 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Thanks, SlowDragon, GP is testing me every 12 weeks but only looking at TSH it went slightly off kilter in November so he dropped 25mcg every other day - follow up test showed 'normal range' so I've to stay on it. I've had absolutely no luck in getting him to consider the private tests I had done. The different doses of levo (I have to juggle 100, 50 and 25mcg tablets now) are different makes. Tried to make a case for same brand, no luck. I did manage to get B12 injections for peripheral neuropathy, as suggested by a neurologist who said it was small nerve damage due to Hashi's but it took five years. I really need them every 6-8 weeks (surprise, surprise neuro was right and they help control the pain) but no luck with that either. GP is 100% standard NHS protocol - my ongoing symptoms and debilitation are 'idiopathic'. My D vits often in my boots so I take a daily supplement, iron and folate too. I have a dairy and egg intolerance. The bladder thing is awful, I've been so ill this time.
I will have the private panel done again, though, thanks for that.
So you will need to go over GP head and see endocrinologist
Ft3 likely even lower than last test and it was far too low then
As you get B12 injections you should also take daily vitamin B complex
This would help maintain B12 levels between injections too
This can help keep all B vitamins in balance and will help improve B12 levels too
But if you still need B12 injections more frequently than every 3 months you should be able to get them every 6-8 weeks
Vitamin B complex
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Other options
healthunlocked.com/thyroidu....
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
How other member saw how effective improving low B vitamins has been
healthunlocked.com/thyroidu...
It’s ALWAYS worth trying strictly gluten free diet
If you are lactose intolerant you may need lactose free levothyroxine …..
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant), Teva is by far the best option
Aristo (currently 100mcg only) is lactose free and mannitol free.
March 2023 - Aristo now called Vencamil
healthunlocked.com/thyroidu...
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Government guidelines for GP in support of patients if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
markvanderpump.co.uk/blog/p...
markvanderpump.co.uk/blog/p...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If 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
This is fantastic info, thank you SO much. Because I've other stuff going on (chemo four years ago gave me a couple of lingering symptoms and medication needs; I've been referred for a sleep study for possible hypersomnia or apnoea) it's so hard to unravel what's going on. Doubly so because the GP just doesn't believe that the thyroid could be responsible for the fatigue, pain etc. So I feel I'm constantly questioning myself, and I'm very timid about pushing (I've had a couple of awful experiences with specialists, and I'm sick of being treated as if I'm 'just anxious'. I'll need to make a list of dietary and lifestyle things to try after I follow up on your excellent links here - thank you so much. I am so physically low, I can't bear the thought of living with even more chronic pain and discomfort from my bladder
Oh it's also really tricky with my meds - I take omeprazole (which I refused to double when my voice problems had throat pain was put down to reflux), ramipril for post-chemo floppy heart valve, amitriptyline and clonazepam for pain and muscle spasms AND I'm only awake 13 odd hours a day - I get in such a pickle trying to space meds out from one another, with or without food etc. I meant to have them all reviewed for lactose, so that's another thing to add to the list.
Acid reflux extremely common due to LOW Ft3 resulting in LOW stomach acid
Same symptoms as high stomach acid
PPI like Ompeprazole is to treat HIGH stomach acid
Thousands of thyroid patients inappropriately prescribed PPI
Thousands of posts on here about low stomach acid
healthunlocked.com/search/p...
But never assume you have low stomach acid
healthygut.com/4-common-bet...
Web links re low stomach acid and reflux and hypothyroidism
nutritionjersey.com/high-or...
stopthethyroidmadness.com/s...
thyroidpharmacist.com/artic...
How to test your stomach acid levels
healthygut.com/articles/3-t...
meraki-nutrition.co.uk/indi...
huffingtonpost.co.uk/laura-...
lispine.com/blog/10-telling...
Useful post and recipe book
healthunlocked.com/thyroidu...
Protect your teeth if using ACV with mother
healthunlocked.com/thyroidu...
Ppi
Omeprazole will lower vitamin levels even further
gov.uk/drug-safety-update/p...
webmd.com/heartburn-gerd/ne...
pharmacytimes.com/publicati...
PPI and increased risk T2 diabetes
gut.bmj.com/content/early/2...
Iron Deficiency and PPI
medpagetoday.com/resource-c...
futurity.org/anemia-proton-...
last vitamin results
Ferritin - extremely deficient
B12 and vitamin D insufficient
Folate not tested
GP should have done full iron panel test for anaemia….did they
cks.nice.org.uk/topics/anae...
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Medichecks iron panel test
medichecks.com/products/iro...
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
healthunlocked.com/thyroidu...
Effective supplement
healthunlocked.com/thyroidu...
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Iron and thyroid link
healthunlocked.com/thyroidu...
Excellent article on iron and thyroid
cambridge.org/core/journals...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Shellfish and Mussels are excellent source of iron
healthline.com/nutrition/he...
Heme iron v non heme
hsph.harvard.edu/nutritions...
Ferritin over 100 to alleviate symptoms
healthunlocked.com/thyroidu...
Great research article discussing similar…..ferritin over 100 often necessary
ncbi.nlm.nih.gov/pmc/articl...
Low Iron implicated in hypothyroidism
healthunlocked.com/thyroidu...
Ferritin range on Medichecks
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
11 months ago you were on 100mcg daily and Ft4 too low and Ft3 far far was too low and vitamin levels extremely poor
100mcg thyroxine a day.
CRP 0.76 (<5.0)
Ferritin 17.7 (13-150)
Magnesium 0.99 (0.7-1.0)
Cortisol 549.0 (166-507)
Thyroid function:
TSH 0.53 (0.27-4.2)
T4 total 112.0 (66-181)
Free T4 17.2 (12.0-22.0)
Free T3 4.03 (3.1-6.8)
Immunology:
Anti-thyroid peroxidase 119 (<34)
Anti Thyroglobulin 30 (<115)
Vitamins
42 (insufficient 25-<50)
B12 351 (145-569)
Folate haemolysed
FT4: 17.2 pmol/l (Range 12 - 22)
Ft4 only 52.00% through range
FT3: 4.03 pmol/l (Range 3.1 - 6.8)
Ft3 terrible at 25.14% through range
These results suggest you needed dose INCREASE, not reduced
Most people when adequately treated will have Ft4 at least 70% through range and Ft3 at least 50-60% through range
For good conversion of Ft4 to Ft3 we need OPTIMAL vitamin levels
Optimal vitamin levels are
Vitamin D at least over 80nmol
Ferritin at least over 70
B12 at least over 500
Folate near top of range
I've had UTIs for many years....now Chronic UTI.
I'm absolutely convinced this is connected to what eventually proved to be Thyroid Hormone Resistance and low cellular T3.
Suggest a full thyroid evaluation as SlowDragon advises... you will probably find your T4 to T3 conversion is poor (low FT3 compared to high FT4)
As a consequence your FT3 will be low with consequent symptoms.
UTIs can be a symptom of hypothyroidism
Optimise nutrients as advised by SD
More levo is require...and ultimately if labs don't improve the addition of a little T3 may be of benefit.
Sadly thyroid treatment is currently very poor so we need to learn and self advocate!
The GP I see is the 'expert' in the practice - no help at all beyond top line number and he didn't understand about T3&4,so no luck there. I'll repeat the thyroid panel and see what it shows - thanks!
Good luck!
Keep at them....those results will point the way forward. Knowing what needs to be done is at least half the battle.
I guess my utis over many years have been wrongly treated... as was my thyroid condition...I'm now a walking example ( like many of us) of what happens if thyroid disease is wrongly diagnosed and treated.
Not a moan....just a fact.
Medics are clueless about thyroid disease, beyond , "this little white pill which you need to take for the rest of your life, will keep you well".
I think that's the biggest lie, with the greatest impact, that I've ever been told in all of my 77 years!
Thankfully we have the internet now, and this amazing site, so the opportunity to learn and self advocate is greater....it helped me realise I wasn't the only one barely able to functionand spurred me on to find the answers.
I once said to a GP as I sat in a heap in her surgery, " I'm convinced there is an answer to this so if you can't provide it then I'm just going to have to find it myself"....and I did!
She patronisingly said to me, " Oh don't get stressed about it, just do what we tell you".
Had I done that I'd most likely be dead now.
What I'm trying to say is don't accept the ill informed nonsense they dish out, get hold of the facts and then you are better able to make a substantiated case for better treatment.
The days of "Doctor knows best" are long gone !
Thank you! Yep, my faith in modern medicine has taken a blasting with chronic stuff - "easily diagnosed and easy to treat" I was told in 2009 when my thyroid became underactive. Only when I found this site did I even consider all the pain, fatigue and weakness could be the Hashimoto's (and I had to get the private panel done to establish the antibodies, GP doesn't see it as AI even now)
Have you tried D-Mannose? I suffered the exact same problems for years, there was no infection in lab results so Dr says 'no'. A friend suggested D-Manose and it has been a small miracle for me. It's a simple sugar which is also contained in cranberry juice. It's easily available, a little expensive but well worth it! If you haven't tried it it may be worth your researching it. Here's a link to a recent review: ncbi.nlm.nih.gov/pmc/articl...
Yep, GP said it was irrelevant as levo brought me into "normal range". You've reminded me to repeat the private tests though, see what story it's telling this time. B12 injections is progress.
Why not take a broth test to find out which antibiotic will actually work for you. It is a private lab test. The dip stick test has been going since 1958 but not fit for purpose.
Oh I've never heard of that. Both GP and hospital samples failed to culture in the lab.
Well it's so important to find out exactly which bacteria you have. All the antibiotics that you are taking maybe wrong. If you would like info on the Laboratory I can PM you the details.
That would be great,thank you
It's OK for me to post the details on the site. focuslab.online is the lab that you require they are Newcastle based. Click on the UTI to order the testing kit it will take several days for the lab to test your sample. The price has gone up quite a bit but if you are in trouble, and for a long time it could help. You will receive a reply with the details of exactly what bacteria you have and the antibiotics that will treat it. They helped me back in the UK when I became very very ill with a UTI. My kidney was damaged threw lack of care/knowledge.
Apologies for jumping in here.
I've heard of broth tests but assumed they were done via an endo.
Can these tests be carried out directly with the lab you mention?
If so, I would appreciate details so that I might consider this as an option
With thanks
DD
Find the details posted above.
Thank you for sharing
Brightness14,
Forum rules say you can post the details of the broth test lab you use on the forum, and it might be of use to others.
I haven't heard of this so am going to have a good read. Thank you for sharing 😊
OK fine I will post the details.
absolutely linked to thyroid. I had 15 years of a chronic uti, saw specialist after specialist and must have taken thousands upon thousands of antibiotics. I had many surgeries trying to find the issue and my bladder looked perfectly healthy. I started thyroid medication and got optimal and my bladder infections/pain disappeared entirely. I put it down to some tablets called hiprex I was finally prescribed (which are excellent btw) which I started at roughly the same time as the thyroid meds. It’s only been the last year I’ve realised it’s my thyroid as the root cause as I had to come off my NDT for 6 weeks and my issues started back up again. Not quite as bad as last time due to the hiprex but still a few infections when my immunity has felt low!
please try hiprex if you haven’t already until you can figure out what’s going on with your levels x
MyrtleMac,
There are plentiful posts from forum members suffering ongoing bladder issues and UTI's (see links below).
I experienced bladder trouble before being optimally medicated. Normal urinary bladder functioning is dependent upon good function of the detrusor muscle during the storage and voiding phases, which requires optimal thyroid hormone levels to work properly.
We need to empty properly for good bladder health, and urine 'infection' with leukocytes (WBC's) but no found bacteria is a common phenomenon called sterile leukocyturia. I had 'bits' in my wee for years that no doctor could ever account for. They are not there now.
There was some members with chronic UTI's being treated long term with antibiotics, and I seem to remember a certain combo was favoured but can't remember what or who it was. DippyDame where you in on this conversion about a year ago?
.
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
.
This link explains the presence of WBC's in our urine. ... ambar-lab.com/en/leukocytes...
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