Still struggling ...

[UKmale_hypo]

Hi All. I am asking or help and advice again. I have been titrating Levo dose up since last September having figured out I have central hypothyroidism, and managed to explain this to my endo. I started on 25mcg and worked my way up. Endo says to ignore TSH and target FT4 to the top of the range. My results are above. I increased to 150mcg on 20th March. I am 90Kgs in weight, so the general calculation gives me a full replacement dose of 144mcg/day (I realise this is only a rough guide).

I have honestly felt a bit worse as the dose has increased, with increasing hypo (definitely NOT hyper) symptoms. I did initially feel a little warmer, but now feel colder, and I am more sluggish and fatigued, feeling generally sad and tearful sometimes, and spend some days in bed. However my FT4 is still not quite at 50% of the range. I realise it is not necessarily a linear path of improvement and that there is a sweet spot to get into in terms of dose and levels, but I really need to start feeling better asap.

I also have Growth Hormone Deficiency (GHD) and my endo wants me to have some further testing to monitor that next month and they have sent me a date. I was diagnosed with GHD in November 2020 and treatment has been really life changing, but not completely restorative. The thyroid tests above have all been done at my GP, for my convenience, but I was thinking of combining the GHD tests with thyroid testing at the hospital, and wondered if I should get anything else tested at the same time. Some here have mentioned that I should get FT3 tested also, as well as vitamin D, folate, B12 and ferritin? Do I need to check RT3 too? Is that something the NHS even test?

I was also wondering if I could have a secondary adrenal insufficiency problem that is being made worse by the thyroid meds? I seem to remember there supposedly being some link, but I am not totally up to speed on it. I've had cortisol tested as a morning blood test and it's usually been OK and >300 at least. I also had a short synacthen test, but I understand that doesn't test for secondary AI. I might be overcomplicating things with thoughts of 2nd AI, but just trying to look at all angles.

So, I feel things really should be improving, but my numbers are still not ideal. Any and all thoughts very welcome as to the way forward.

As always, TIA.

[Jaydee1507 Administrator]

It would be really good to see where your FT3 is, thats the active hormone. Private tests are available, see link with discount codes. thyroiduk.org/help-and-supp...

Its not worth testing RT3. Its an expensive test and there are multiple causes should it be high, so very non specific.

Have you started on any of the supplements recommended in this reply to a post of yours? We need OPTIMAL vitamin levels for our thyroid hormone to work well. healthunlocked.com/thyroidu...

[UKmale_hypo in reply to Jaydee1507]

Thanks for your reply.

I think I will ask my endo for all the suggested testing and if he doesn't do some of it I will get it done privately.

Supplements: I haven't started any: I wanted to get my thyroid numbers up first to see if that would work. I will look at all of this now in light of test results.

[Jaydee1507 Administrator in reply to UKmale_hypo]

Supplements: I haven't started any: I wanted to get my thyroid numbers up first to see if that would work.

Just a heads up that the experience of people in this group suggests that approach doesn't work.

[UKmale_hypo in reply to Jaydee1507]

So it is better to get these things optimal in advance? I assume I can still test and supplement now if required?

[Jaydee1507 Administrator in reply to UKmale_hypo]

Indeed it is preferable to raise vitamins to optimal in advance of thyroid levels being optimal.

Testing and supplementing can be done at any time. Best to start one supplement at a time to assess effects.

[SlowDragon Administrator]

You don’t need RT3 tested

You do need TSH, Ft4 and FT3 testing and vitamin D, folate, B12 and ferritin

Have you ever had both thyroid antibodies tested

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...

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...

Only do private test early Monday or Tuesday morning 9am latest

Last dose Levothyroxine 24 hours before test

[UKmale_hypo in reply to SlowDragon]

Hi - thanks for replying.

I will ask endo for all the testing and get anything he won't do done privately. Thanks for the list of private options.

Had antibodies tested a while back and all normal. Also I have central hypothyroidism, so not on the lookout for Hashi's.

[greygoose]

Not surprising that you have Growth Hormone Deficiency, given that you probably have Secondary Hypo - i.e. a defective pituitary. HGH is also made by the pituitary. BUT, you do need good levels of T3 for the pituitary to produce HGH, and it seems you have no idea what your FT3 level is. So, you really need that tested.

The pituitary also produces ACTH, which stimulates the adrenals to make cortisol - just as the TSH stimulates the thyroid to make thyroid hormone. So, if your pituitary is under-producing, that will mean that your adrenals are under-stimulated - as you say: 2nd AI.

Who told you that the short synacthen test doesn't test for 2nd AI? I thought that was the point of it. However, you say that your 8 am serum cortisol test is usually good - what were the results and the ranges, by the way? - so why do you suspect 2nd AI?

Just to check: do you always take your levo two hours after food and one hour before food? Do you take other supplements and/or medication well away from your levo? Do you leave 24 hours between your last dose of levo and the blood draw? You do possibly have an absorption problem in the gut. Do you have symptoms of low stomach acid or leaky gut?

[UKmale_hypo in reply to greygoose]

Hi - thanks for replying.

Yes, it is definitely a pituitary(/hypothalamus) problem, so central hypothyroidism, which ties in with the GHD.

T3 - I did have it tested before treatment and the level was healthy, but it's not been tested since starting treatment. I will get everything tested, including T3 and all the relevant vitamins. Previous results on 17th May 2022 were:

TSH: 2.28 [0.27-4.20 mIU/L]

FT4: 11.2 [11.0-21.2 pmol/L]

FT3: 5.6 [3.1-6.8 pmol/L]

Cortisol: 315 [133 to 537 nmol/L]

ACTH: 24 [0-46 ng/L]

Only thought about 2nd AI as cortisol might have been affected by Levo, but I am just guessing.

Short synacthen test only tests the adrenal response: Synacthen is synthetic ACTH, and cortisol is measured before and after it is injected to measure the ability of the adrenal glands to respond to stimulation. The test therefore doesn't measure the ability of the pituitary to produce enough stimulation.

I do all the things you list in terms of taking Levo and testing the right way.

With regard to low stomach acid or leaky gut, I do have some of the symptoms, but not sure if they are symptoms of other things.

[greygoose in reply to UKmale_hypo]

TSH: 2.28 [0.27-4.20 mIU/L]

FT4: 11.2 [11.0-21.2 pmol/L]

FT3: 5.6 [3.1-6.8 pmol/L]

Well, yes, it might seem healthy if you look at it in isolation. But, look at your FT4. It's on the ground. So, what happens is, when the thyroid is struggling, for whatever reason, it makes more T3 at the expense of T4, to keep you alive. So, that is not healthy, that is showing that your thyroid is struggling. And it's struggling because it's not getting enough stimulation from the pituitary. We cannot just look at one thyroid result, we need to look at all three together to get the full picture. With that low FT4, the TSH should be much higher.

Only thought about 2nd AI as cortisol might have been affected by Levo, but I am just guessing.

Why would cortisol be affected by levo?

Short synacthen test only tests the adrenal response: Synacthen is synthetic ACTH, and cortisol is measured before and after it is injected to measure the ability of the adrenal glands to respond to stimulation. The test therefore doesn't measure the ability of the pituitary to produce enough stimulation.

Well, it does, really, measure the ability of the pituitary. Look at it this way: your cortisol is low. Why? It could be due to the inability of the adrenals to produce hormone, or it could be due to lack of stimulation from the pituitary.

You measure the cortisol level to begin with, and it is below optimal. You inject the ACTH, and the level rises. OK, so that means that there's nothing wrong with the adrenals themselves. But, it also means that your cortisol is low because the adrenals are not getting the stimulation from the pituitary. I realise you're not measuring the amount of ACTH the pituitary is producing, in the way we measure TSH, but the results speak for themselves.

With regard to low stomach acid or leaky gut, I do have some of the symptoms, but not sure if they are symptoms of other things.

Have you ever had your stomach acid level tested? Read this article and try the home test at the end:

"For the test, you'll drink half a glass (4 ounces) of cold water combined with a quarter teaspoon of baking soda, on an empty stomach. Then time how long it takes you to burp. If it takes longer than three to five minutes, the theory goes, you don't have enough stomach acid."

my.clevelandclinic.org/heal....