Finally a diagnosis, but not what expected

[Julesboz]

Hi all, just wanted to let everyone know who has helped me by giving advice over the past 3 months that I finally have a diagnosis. Here's my last post healthunlocked.com/thyroidu....

I got a call back from the doctors as my last set of bloods came up with something. I expected more anaemia or something similar but it turns out I have chronic kidney disease level 3. It would explain the anaemia and deficiencies I've been having over the recent past and I believe low T3 with normal TSH (which is what I have) is quite often found in CKD. Whether it's the low T3 that's responsible for the CKD or the other way round, who knows, and I guess the doctors will be unwilling or uninterested in finding out. I'm now being monitored as a CKD patient anyway.

I will continue every so often to get private thyroid blood tests done as I'm not convinced my thyroid is brilliant and if T3 goes under threshold I'll try and convince the doctors to do something. Anyway, just wanted to say a big thanks for all the great advice I've had on this forum to help me get this far.

[miglet54]

You might always consider self help re the t3, with guidance of course. We are our own best advocates after all.

[jimh111]

I believe chronic kidney disease can cause 'low T3 syndrome' which is a form of 'non-thyroidal illness' (NTI). That is all I know about this.

An NTI is an illness that throws up unusual thyroid blood test results. Endocrinologists take the view that the underlying illness is causing the unusual test results and therefore they shouldn't treat the results with thyroid hormone. This seems reasonable enough if the NTI is the result of a short term illness such as an infection or truama to the body. However, in my view this approach is nuts if the NTI is a long term, i.e. chronic condition, especially if the patient is showing signs and symptoms of a thyroid disorder.

Interestingly, your TSH, fT3 and fT4 all improved after your deficiencies were addressed, although it's just possible this was due to the blood being drawn at a different time of day but I wouldn't expect the increase in fT4. It does seem that if they could fix your kidney problem and suppliment your deficiencies you might recdover.

On the assumption that they can't totally fix your kidney function and hence you will continue to have low T3 syndrome as a consequence it makes sense to treat your hypothyroidism. Indeed it is always possible that the low T3 hinders your kidney recovery (I'm totally speculating here, no expertise or evidence).

On this basis I would say to your doctors that you are experiencing symptoms of hypothyroidism, CKD causes low T3 syndrome, you believe your CKD will not be cured anytime soon, so therefore can you have some thyroid hormone. It makes sense to have a little liothyronine (L-T3), however this will lower your TSH and you will produce less T4 also, so a little levothyroxine (L-T4) makes sense also. If there's no prospect of curing your kidney condition soon I'd press very hard for some thyroid treatment. If they only want to give levothyroxine it would be reasonable to give it a try but insist that although you are willing to give it a go you don't want liothyronine ruled out. It they are not helpful or say they can't prescribe insist on a quick endocrinilogist referral.

Please note I'm a patient not a doctor.

[Julesboz in reply to jimh111]

Thanks for both of your replies. I will discuss it with my doctor and see what she thinks. I suspect she'll dismiss it, but I will give it a go!

[Margie5967 in reply to Julesboz]

Julesboz,

I have hypothyroidism.

My dr recently changed my meds and my thyroid function was horribly off.

Too high which actually means too low.

Can this also affect your GFR?

[Julesboz in reply to Margie5967]

Margie5967, to be honest I don’t know. I posted this a year ago and I’m no further forward. I didn’t have the courage to discuss getting T3 with my doctor as I’m sure she thinks I’m a hypochondriac now! Anyway I decided to manage my diet in a kidney friendly way, and take supplements in order to address my inability to absorb vitamins and see what happens at my annual blood test which I’m just waiting the results for. I’m crossing my fingers that things will have improved.

[Margie5967 in reply to Julesboz]

Thank you .

[Katepots]

So sorry to hear your diagnosis Jules. Good luck. Yes keep testing the thyroid and read up on everything to do with CKD so you are informed and know you are getting the right help/treatment.

Remember with all the NHS cuts we have to fight to get well and if the Drs know you are informed they will know not to try and fob you off!

[crimple]

Poorly treated hypo thyroid leads to problems with all sorts of things. in the past raised cholesterol was used to diagnose hypothyroid. I know my kidney function tests were not brill, at a time when my TSH was still too high, just below 2. I have not had a test in 3 years but would expect it too be better now cos my TSH is well below 1 and sends my gp into a panic. ALl vital organs are affected by low or under treated thyroid. they will never improve if you are under treated. being really cynical I could say it's just another excuse to prescribe more drugs and keep pharma companies happy and you under treated!