Does anybody know of any UK kidney forums

[nellie237]

Got a call from my GP today re blood results. Looks like out of the blue my kidneys have taken a massive nose dive.

[nellie237]

thanks

[SlowDragon Administrator]

What are your most recent thyroid and vitamin results

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

Have you had dose change in levothyroxine recently

Low kidney function strongly linked to being hypothyroid, especially low Ft3

ncbi.nlm.nih.gov/pmc/articl...

What vitamin supplements are you currently taking

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

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)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[nellie237 in reply to SlowDragon]

Thank you slowdragon the low FT3 link is interesting. Considering what is going on my GP may even agree to test it. I have seen that there is a link to coeliac and kidneys as well. I am on 125mcg, I am 91/2 stone. My last TFT was 08/01/21 TSH 0.84 (0.55-4.78) T4 21 (9-22.7) not early am as lab only open early for blood clinics since Covid.

There is so much going on. Coeliac diagnosis at end of Nov on blood results >x10. and straight to GF. Vits/mins checked 08/1/21

Vit D 22 (25-250)

Folate 2.3 (3.4 - 12.2)

Ferritin 15 (10 - 291)

B12 284 (211 - 911)

I've done the 40,000iu vit D for 6 wks with K2-MK7 & Magnesium taurate, Still taking 5mg folic acid & 2X 210mg Ferrous fumerate. B12 injections prescribed every 3 weeks.

My bp was creeping up, so losartan increased from 75 to 100mcg. 2 weeks later, on 19/02/21 Urea & Electrolytes checked

Sodium 136 (133-146)

Potassium 4.6 (3.5 - 5.3)

Urea 3.8 ( 2.5 - 7.8)

Creatinine 71 (45 - 84)

GFR 73 (>90)

BP still too high so Indapamide 1.5mg added. On the 4th day I woke up very confused with a very bad headache and excessive reflux (which on reflection had been there for days) and went by ambulance to A&E where I felt like a nuisance, was told that my sodium was a little low and kicked out. I threw up when I got home and left an e-consult for my GP. My GP sent me a blood form to repeat urea & e's this wk. Saturday 27/02/21 I had my 1st Covid jab. I shook violently for 4hrs and couldn't get warm for 48hrs ...probably not a good idea but nobody was concerned so....

Weds 03/03/21 I had an appointment to see a Gastroenterologist at last........he had the A&E bloods..the only thing off was Sodium at 127, On this result & very tender around sternum he has booked me for a scope next w/end + chest x-ray + Ultrasound. Told to stop Lansoprazole. - yay. if I didn't feel like I need it at the moment, but hey ho.

Yesterday I went for the repeat Urea & Electrolites

Sodium 136

Potassium 4.6

Urea 6.1

Creatinine 155

GFR 29

GP called me today quite stunned with the results - told me to stop losartan & has prescribed amlodipine instead - just what I need more reflux & repeat bloods on Monday. Lab returned warning "AKI warning stage 2". So this is a bit out of the blue. I am going to yellow card Indapamide. If you have any suggestions on what I should be pushing the GP for that would be very helpful, but I appreciate that this is all a bit complicated.

SlowDragon

[Anastasia17 in reply to nellie237]

Hi. As I have been anaemic for several years, I am aware of the Ferritin levels for women: a nurse told me that they should be at 70 according to European norms. The NICE/NHS Guidelines are very low. To keep my iron levels at a decent level, I take Ferrous Sulfate tablets (no constipation, unlike other iron tablets), I buy them from Boots, you could also ask your GP to prescribe. You could also buy the liquid supplement Spatone, it's best to take vitamin C as it enables the absorption of iron by the body.

Good luck. x

[nellie237 in reply to Anastasia17]

The Iron I am taking has been prescribed by my GP and yes I've been taking them with Orange Juice.

[SlowDragon Administrator in reply to nellie237]

Insist on FULL Thyroid testing

Essential to test TSH, Ft4 and Ft3 together

Obviously your vitamin levels were absolutely dire

Exactly what vitamin supplements are you currently taking

Have they been retested since

Looking to improve to at least

Vit D 100 (25-250)

Folate half way through range (3.4 - 12.2) - odd range?

Ferritin 70 minimum ( 10 - 291)

B12 at least over 500 ( 211 - 911)

[nellie237 in reply to SlowDragon]

I'm only taking the folic acid 5mg & the ferrous fumarate 210mg X 2 now. B12 injections at my surgery. I figure I've probably got enough vit D on board to wait and see how my kidneys do over the next week. I'm not due for re-testing until 1st wk in April.

I don't want to give my kidneys any more work than I absolutely have to so not taking magnesium or even vit C. The GFR dropped 44 points in just over a week - its only got to drop another 14 points for me to be facing dialysis. Hopefully, they will spring back, but I think there is probably a tumour to be found somewhere.

When I speak to the GP on Monday I will ask for full TFT - he is probably not allowed though.

Range for folate is correct 3.4 - 12.2ug/L

[buddy99 in reply to SlowDragon]

Just a warning. My kidneys are also going to the pot. As I mentioned here before my T3 is very low but for the most part within normal range. Quoting the above research to my (former) endo I was told that low T3 syndrome means T3 levels are way below normal range. He did not test for T3 at all. He considers that "a waste of tax payers' money" but at the same time did not quite accept the private test either. T3 was clearly not an issue for him to be considered. Anyway, before using the above research it is probably advisable to know what the definition of "Low T3 Syndrome" is. I'm convinced that having low T3, even within reference range, lets your body deteriorate slowly over time but the medical system generally does not. As always, thank you SlowDragon for sharing your knowledge. I wish you were an endo. How many people could be helped to live better and possibly longer lives.

[SlowDragon Administrator in reply to buddy99]

I had zero quality of life on just levothyroxine for 28 years

It kept me alive, but unable to function

Addition of just 20mcg T3 split into 3 doses spread through the day has enabled complete recovery

This is after all, what a normal thyroid gland does .....makes 80% Ft4 and 20% Ft3

Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3

NHS and Private

[e-mail]

[buddy99 in reply to SlowDragon]

I have resigned myself to the fact that I will not be better because so far no doctor has taken me seriously on the T3 issue. Talking to other Hashis there is no physician here in Manitoba, Canada who will. I'm now in stubborn mode and decline any treatment for anything that could be remedied by giving me T3. I will just die of natural causes instead of pumping myself full of unnecessary meds. I'm done.

[nellie237 in reply to buddy99]

buddy99 SlowDragon Well, I'm just flabbergasted

[SlowDragon Administrator in reply to nellie237]

I was undiagnosed as severely gluten intolerant, multiple vitamin deficiencies.

Strictly gluten free diet, continuous supplements to maintain OPTIMAL vitamin levels and T3 prescribed

Now walk 10k steps minimum everyday and lead completely normal life.

[buddy99 in reply to nellie237]

I hope you get that kidney thing all figured out, nellie237. It sounds very scary to me. Best of luck. My best wishes. Please take good care of yourself.

[SlowDragon Administrator in reply to buddy99]

There’s EXCELLENT thyroid support in Canada via Tanya’s really superb site

thyroidpatients.ca

thyroidpatients.ca/2019/09/...

[buddy99 in reply to SlowDragon]

Yes, it is phenomenal. I get their emails when a new post comes out. This is an occasion, though, where more knowledge does not necessarily translate into more power, But enough with the pessimistic outlook. I hope that nellie237 gets her kidney troubles sorted out. This must be scary as all heck and unfortunately I have nothing helpful or comforting to say. Just hang in there. I wish you all the very best. Be safe. Take care.