Absorbtion with ileostomy

[Jackobee]

I had an ileostomy in January, partial thyroidectomy 37 years ago and have been on Levothyroxine for approx 33 years. Feel hypothyroid, latest results TSH <0.05 which is normal for me but freeT4 has risen to 26 from 23.2 in December so now considered to be hyperthyroid. If ileostomy is causing poor absorbtion of thyroxine could this explain the test results?

[Jazzw]

If you’re feeling hypo but have overrange FT4, given that you have absorption issues it might be more likely that you’re suffering either from Vit B12 deficiency and/or iron deficiency. The symptoms can be very similar. Has your B12 been tested?

[Jackobee in reply to Jazzw]

Not recently so thanks I will try and arrange for testing

[shaws Administrator]

Is your doctor suggesting hyper due to your very low TSH. Probably - Most do but I hope if you are feeling well he doesn't adjust your dose.

You haven't had a Free T3 blood test and I would suspect it might be low which could mean that you don't convert levothyroxine (T4) to sufficient T3.

T4 - levothyroxine is inactive. It has to convert to T3 (liothyronine) and it is T3 which is the only active thyroid hormone and it is needed in our millions of T3 receptor cells.

If we don't have sufficient T3 then our body isn't able to function optimally.

Blood tests for thyroid hormones have to be at the very earliest possible, fasting (you can drink water) and allow a 24 hour gap between your last dose of levo and the test and take afterwards. This helps keep the TSH at its highest as doctors are apt to only take notice of it and not FT4 and FT3 which are rarely tested. If you had yours later, request a new test following the procedure suggested.

If you've not had B12, Vit D, iron, ferritin and folate tested, ask for these at your next blood test.

You should also always get a print-out of our latest blood test results and the ranges should also be stated. Members can only respond if the have the ranges too and that is due to labs having different ranges and it makes it easier to comment upon them. We should aim for a TSH of around 1 or lower and some need it suppressed.

If GP will not test Free T3 you can get it privately from one of our two labs, Medichecks or Blue Horizon. They are home pin-prick tests and make sure you are well hydrated a couple of days before and arms and hands are warm for blood draw. You will see on the following why the 'frees' are important.

[Jackobee in reply to shaws]

Many thanks I will try and get the suggested tests done. I'm hoping to get ileostomy reversed in the next couple of months so maybe it's best to wait until after that when I can return to a "normal" diet. I've also wondered whether to try taking Levothyroxine at night but didn't know if I should take it in the morning as normal then again at night or miss out the morning dose.

[shaws Administrator in reply to Jackobee]

Some members prefer a bedtime dose. In that case you miss the night dose when having blood test next a.m. and take after test and night dose as usual. I have read that you can take a week's dose all at once but I think I'd be wary. However this is a link:

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

[Jackobee in reply to shaws]

Many thanks again for your advice, my recent blood test show very low B12 so have started a course of 5 injections over the next ten days, hopefully this will improve conversion but of course with no free t3 test I will not able to prove this. I'll just hope I start to feel human again!

[SlowDragon Administrator]

Suggest you test vitamin D, folate, B12 and ferritin

[SlowDragon Administrator]

B12 is mainly absorbed in lower intestine.

nhs.uk/conditions/ileostomy...

Trouble is on Levothyroxine we need very high B12 for thyroid hormones

Insist on testing.

[Phoenix605]

Definitely get your FT3 and nutrients tested before adjusting. High FT4 suggests you are absorbing your levo well but you may be struggling to absorb nutrients after the ileostomy so may no longer be converting well. I believe conversion also occurs in the guts (not just the liver) so even with good nutrient levels if enough gut is bypassed you may be physically unable to convert enough T4 to T3 You may need a slight drop in levo and a little T3 until you can get reversed. If you test and the nutrients are low, try and get sublingual or sprays which will bypass the gut issues.

[Jackobee in reply to Phoenix605]

I have just requested blood tests from my GP who has agreed to b12 etc but has told me the lab has refused to test free t3 as my TSH is too low. Is this correct?

[Marz in reply to Jackobee]

NO

[Phoenix605]

Unfortunately, yes. Some GPs were ordering a lot of unnecessary tests in a shotgun type approach instread of rulling one thing out before testing for another, so now they have to justify ordering a test or the lab has the right to veto. If the TSH is out of range they should do FT4 and if the FT4 is out of range they should then do FT3, in practice you tend to need suppressed TSH and over range FT4 to have a hope of them doing FT3. As TSH is the gold standard they wont test the other two without a very good reason (writing suspect thyrotoxicosis didnt work!)

Your best route is private testing via Blue Horizons or Medichecks, if you go via the links on the TUK page they get a small payment towards running these sites.

I have only used Medichecks but they both do similar tests. FT3 on its own is £29, TSH FT4 and FT3 are £39. Both do regular offers and I usually buy a couple when the triple test is down to £29 on ‘Thyroid Thursday’ offers as they have at good shelf life.

You can opt for a finger prick test or a blood draw kit, I have finger prick for interim testing and get the nurse to fill an extra vial from the blood draw kit when I get any NHS tests done, mine are always happy to oblige as the needle is already in my arm! Finger prick is easy enough as long as you get your fingers nice and warm under a tap and are well hydrated, just gently massage the tip to encourage blood flow, dont squeeze hard as it bursts the blood cells. My GP has always accepted the private results OK.

[Jackobee in reply to Phoenix605]

Thanks I have spoken to another doctor, who is also my boss, who told me the lab needs a clinical reason for testing free t3. I feel my concerns about poor conversion, given my current health issues, would be a good enough reason to insist test done but my GP was very dismissive and refused again. I have had blood taken for the other tests and when results received I will register at another surgery who I know have one GP who trained in the endocrine dept. of my nearest general hospital and who has been very sympathetic to a friend who has concerns about her thyroid, she suffers from toxic cysts, her TSH and free T4 are within range but he has agreed to prescribe a low dose Levothyroxine to see if she feels better. I live in hope!

[Phoenix605 in reply to Jackobee]

Sounds like a plan! In the meantime if you still want the FT3 Medichecks have 20% off til midnight monday. Think on its own its £23 or the triple is £31, Best comparison for conversion would be an FT3 and FT4 from the same sample though.

[Jackobee in reply to Phoenix605]

Thanks