Botox for bladder control

[Mannequin18]

Hi all, I have been offered botox for bladder control. I have autoimmune conditions, and I am concerned if it is suitable. Has anyone on this forum had Botox for any reason, and was it okay?.

Thank you in advance.

[Greybeard]

I've no direct experience of this but, a friend who has MS, had botox injections into his bladder to control the urge to void his bladder excessively. He reports it was a success although he may need the process repeated every 6 to 12 months. The process was performed under general anaesthetic.

[Mannequin18 in reply to Greybeard]

Thank you for that information.

[SlowDragon Administrator]

How frequently do you get B12 injections

Low B12 is implicated in poor bladder control

Is your FT3 at good level?

Low FT3 seems to affect B12 too

[Mannequin18 in reply to SlowDragon]

Hi, thank you for that info. I have B12 every 12weeks, it is not enough. I have asked for 8 weeks, by try it's just disregarded. I have recently purchased my own B12 and intend to SI monthly. My surgery only tests TSH. So I have no idea about T4 or T3.

I don't think I am cared for very well, and I have just been tested positive for Lupus. I am seeing a rheumatologist in January.

I have always thought my problems are all related to my autoimmune conditions, but getting a doctor to think the same is difficult.

[SlowDragon Administrator in reply to Mannequin18]

So first step is to get full Thyroid and vitamin testing privately

Just dosing according to TSH is completely inadequate

How much Levothyroxine are you currently taking?

Presumably you have Hashimoto's? (Autoimmune Thyroid disease)

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels or test privately

Hashimoto's can occur with Lupus or be misdiagnosed as Lupus

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Have you had Coeliac blood test?

Are you on strictly gluten free diet?

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

[Mannequin18 in reply to SlowDragon]

Hi , thank you for your reply. I have Autoimmune hypothyroidism and am taking 150mg daily. My last bloods were TSH 0.90. But that was taken at 9.30am.

I have gone mostly gluten free as I do have stomach erosion.

That was discovered after a Gastroscopy earlier this year. All I have been offered is Omeprazole. End of. No-one is checking on that.

I have been anaemic most of my life. When I came to thus surgery 2 years ago I was well, and taking Ferrus fumerate. But my doctor stopped it saying it was poisonous. (He doesn't believe in taking any vitamins).

I don't see him any more.

I feel and look anaemic. Perhaps when I see the rheumatologist they will do further bloods.

But I will also look into private testing. As I don't feel well at all.

My stomach is constantly painful, and uncomfortable.

I will look into the tests you suggest, thank you.

[SlowDragon Administrator in reply to Mannequin18]

Strictly gluten free diet does need to be absolutely strictly gluten free.....as if Coeliac

Watch out for cross contamination. Don't share butter, jam, toaster, cutting boards etc

Every time you eat even a speck of gluten it takes weeks to recover

chriskresser.com/the-gluten...

Many hypothyroid patients have low stomach acid.

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

Omeprazole lowers stomach acid.

pulsetoday.co.uk/clinical/m...

gov.uk/drug-safety-update/p...

[Mannequin18 in reply to SlowDragon]

Thank you for all that information. I will definitely look into it.

Also, I have been puzzled by taking any vitamins on the basis that if I don't absorb B12. Do I absorb other vitamins.

Oh and I should have said that I was sceptic about taking Omeprazole because of the low acid. I tried to get an answer about this from my doctor, but he blistered and just kept saying take the Omeprazole then if you are in pain. He could not answer my question about the low acid. I seem to know more than him on all of my illnesses.

I know I am fed up of feeling ill. So I will have to do private testing for some answers.

Thank you.

[SlowDragon Administrator in reply to Mannequin18]

Gut absorption is frequently poor with Hashimoto's

Hence so many of us find mouth spray vitamins are more effective

[Mannequin18 in reply to SlowDragon]

Thank you. Is it allowed to recommend one?. If so could you please.

[SlowDragon Administrator in reply to Mannequin18]

Vitamin D

Many of us use Better You vitamin D mouth spray. They do 1000iu or 3000iu spray. (100 sprays per bottle)

Or 1000iu spray with vitamin K2 mk7 included - listed as 3000iu (3 sprays per day for 3000iu - so lasts 30 days at 3000iu)

Folate and B12 Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or alternatively Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

If still have low B12 symptoms (And bladder control suggests you might )

Or Jarrow do sublingual B12 lozenges. Generally the advice is to start with bottle of Jarrow 5000mg and when finished go on to 1000mg lozenges. Personally I just took. 2-4 1000mg tablets per day and then slowly reduced over several months

Better You do B12 spray.....apricot flavour. (rather sweet )

Low ferritin

Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C in form of high vitamin C food (like orange juice) can help improve iron absorption