Thyroid issues r the problem

[Vasiliki99]

I have Hashimoto thyroiditis and I have CFS/ME I am sure that I have bowel problems and bladder problems and immune problems. I can't work out what is what as the body is malfunctioning. It's not getting better levothyroxine 75mg per day and multivitamin setraline for depression but it supposed to help guts and antihistamines for inflammation mast cell disease prob part of CFSME but I think thyroxine does not work I've been taking 2012 onwards non stop it gives a small boost but not much else. I am sure my body gets worse in the winter and I have such poor immune response that I have to practically self isolate plus the ME means I have little energy. I wonder what is thyroid what is immune system what is ME? And I can't find any NDT or plain T3 nor am I sure they will make a huge difference even if I went in them .......any ideas? Anyone? I now have COVID and am thinking it over .....I have irritable bowel and can't eat much either. I just don't know what percentage of us remain ill on all or any of the current treatments ???? My thyroid disease has been awful for my health........sorry to bother it's just that I am curious to know whether this is true? Or if I should take thyroid hormone.........in other form certainly my immune system is worse than 10 years ago

[JasmineJasmine]

From what I am hearing, most patients do better with combination T4/T3 but I haven't tried it myself yet. Dr Westin Childs talks about it on YouTube. I hope you find healing soon, good luck.

[Vasiliki99 in reply to JasmineJasmine]

thanks

[greygoose]

Hi Vasiliki99, welcome to the forum.

It wouldn't surprise me in the least if all your problems were down to thyroid - they very often turn out to be.

CFS/ME are not diseases, they are syndromes. Syndromes are a bunch of symptoms. Symptoms have to be caused by something. As you know you have no thyroid it would seem to me that that is the most likely culprit to be causing your symptoms.

75 mcg levo is a very small dose for someone with no thyroid due to cancer.

Depression is a hypo symptom, as are fatigue, low energy and IBS.

Multivitamins are not recommended on here, for many, many reasons. The best thing you can do for your health is to get basic testing for nutrients: vit D, vit B12, folate and ferritin. And supplement according to the results. We can help you with that if you post blood test results and ranges on here. But by taking a multi you are just throwing your money down the drain.

Impossible to comment on levo not working and/or whether you need some other form of thyroid hormone replacement, without seeing blood test results and ranges. So, if you have the results of your latest blood test, post them on here and let's have a look. There are several reasons why levo may not be helping, such as being on too low a dose or not converting well. But without seeing the numbers, we cannot tell.

[Vasiliki99 in reply to greygoose]

ok thanks.....I will see if i can get the thyroid vit D thyroid n folate ferritin B12 .....

[SlowDragon Administrator]

welcome to the thyroid forum

Are you based in U.K.?

If you have blood in your urine this suggests UTI

UTI very common when hypothyroid

Has GP prescribed antibiotics

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Please add most recent thyroid and vitamin results

75mcg is low dose levothyroxine, unless you’re extremely petite

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Multivitamins never recommended on here

Test vitamin levels then only supplement individual vitamins where necessary

[Vasiliki99 in reply to SlowDragon]

Ok thanks - I hear thatt it is good to do the blood test early on a starved stomach.... I will think about it and I see what you mean it could be difficult for multi to b powerful or suitable ......Vit C makes the urine worse - what about magnesium selenium or folic acid fish oils or flaxseed oils r good -- the bladder is IC/BPS it means interstitial cystitis my health is poor the bladder pain is terrible - also u cannot get good antibiotics in the UK easily - n im sure that a lot of urine tests come back No action wen really full of bacteria --------thanks again for your advice all

[SlowDragon Administrator in reply to Vasiliki99]

Persistent interstitial cystitis can be linked to being hypothyroid

Is GP treating you

Other posts that mention IC

healthunlocked.com/search/p...

[Vasiliki99 in reply to SlowDragon]

Thanks, it's very painful but really not much offered over 6 years now affects it positively I believe there is nothing possible. I think I'm stuck with bowel and bladder pain forever . It's a poor life painful but I do manage it fine. Thanks for the help. I wonder if I took NDT wud it b better or T3 but then it may not be easy to find and I may be living in a body that's out of balance anyways....it's like it won't balance it's stuck in this deconditioned fatigued mode.....

[SlowDragon Administrator in reply to Vasiliki99]

Come back with new post with full thyroid and vitamin test results including Ft3 and Ft4

[Vasiliki99 in reply to SlowDragon]

Yep got flu or COVID n Bristol is on the rise so I'm frightened of getting blood tests

[SlowDragon Administrator in reply to Vasiliki99]

Consider doing private test at home

Thousands of U.K. members do this

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

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...

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...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Just TSH, Ft4 and Ft3 test - £32

monitormyhealth.org.uk/thyr...

10% off code here

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...

[Vasiliki99 in reply to SlowDragon]

Thanks I'm just not want too much , I think Tuesday I will do morning 8 am in the morning.

[Vasiliki99 in reply to SlowDragon]

Ords thyroiditis...that's interesting to know thanks

[Vasiliki99]

I wonder many feel like that with these thyroid problems and to what extent thyroid needs re looking at and redeveloping approaches that were done on humans looking at human tissues and proteins and then compiling studies that produced more accurate data on lack of health in those with thyroid issues even on medications and therefore how cud they fix the thyroid issues or the hormonal imbalances the gut issues. It seems the body needs something else or synthesis from the point of view that thyroid meds don't seem to get the body back working it's a problem when it just gets worse over time and more symptoms appear it's also nothing that they can do they cud study humans and track the things that are dysfunction in thyroid patients even with levo NDT or T3. I do feel angry for those with thyroid issues because it's a done deal and it's not easy to change the mal metabolic conditions. If they spent more time dealing with the thyroid absorption and the other organs reactions or failings at least the thyroid can be serious a serious physical disease as the world thinks it's nothing but if course in many it's awful .....