Bloods not matching symptoms 😟

This is a question re. those successfully on NDT, specifically higher doses. My Q is, have you had bloods before not reflect how you feel?

Results:

2 grains for 4 weeks:

T4: 14 (12-22) 20%

T3: 5.9 (3.1-6.8) 75%

2.25 grains for 3 weeks (most recent)

T4: 16 (12-22) 40%

T3: 7.3 (3.1-6.8) 113%

Cortisol, B12, B9 & Iron optimal.

Symptoms:

BBT: 35.5

Average HR: 75bpm

Fatigue

Continued hair loss

Anxiety/low mood

Continued general malaise

Feel that if anything, ought to be OVERmedicated at this point, but still largely hypo and feeling better than lower doses, but not great.

Does it take time to settle, or are bloods largely useless when it comes to NDT?

*pls note this post is not about me but a friend, so it is not useful to look over previous posts as they are not relevant to this*

Thank you all so much 😊

[Lalatoot]

Relentless your friend needs more patience. Test after 3 or 4 weeks is not giving her body enough time to adapt and adjust. She is not letting the full effects show.

I can understand that we want to get better as soon as possible but the body needs time and stability. continually changing doses will add to her being unwell.

Please note the her is a generic term to cover all orientations!!

[Hidden in reply to Lalatoot]

thank you, I agree and will pass on this feedback

[Jazzw]

Is your friend doing blood tests in accordance with the advice here? How long between last dose of NDT and the test?

For what it’s worth, I also wouldn’t call 2 or 2.5 grains a “high” dose. It’s about average. I personally take 3 grains and have done for years.

Finally, tolerance of T3 often depends on having decent iron/ferritin levels and other vitamin deficiencies like low Vit B12, folate, Vit D etc may be causing symptoms similar to hypothyroidism. Are they all optimised?

[Hidden in reply to Jazzw]

Hi Jazz, thanks for your reply she doesn’t have intolerance issues anymore as she takes cortex, she just doesn’t feel a lot of improvement and expected to feel better given the bloods.

Can you possibly point me to the advice given her re. Bloods and tests? I’ve been searching but not been able to find anything. Thank you

[SeasideSusie Remembering in reply to Hidden]

Always advised here, when having thyroid tests:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.

In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:

healthunlocked.com/thyroidu...

If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw. If taking NDT or T3 then last dose should be 8-12 hours before blood draw, split dose and adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

[Jazzw in reply to SeasideSusie]

Thank you so much—I was just looking for a post to copy and paste! 😂

[Hidden in reply to Jazzw]

oh sorry, I thought there was advice about how long to wait between raises. Thank you anyway

[Jazzw in reply to Hidden]

Ah right, sorry for the misunderstanding.

This is a personal take on it.

It depends on what you read. When I started NDT I raised half a grain every 2 weeks until I got to 2 grains. And then I stuck at 2 grains for quite some time, almost a year, while testing to see what happened to my levels. I did that because I read on a well known US site that was the way to do it.

I’ve since come to realise that advice might not be the best. Half a grain a fortnight would be much too fast for many. It’s probably safer to raise by a quarter of a grain at a time (again, only every 2 weeks or so).

The critical thing is to hold for a while once you hit the 2 grains mark, as it’s after that it’s most likely you’ll meet the need to do fine tuning. Your friend doesn’t seem to have done that?

Once you get past 2 grains it’s very much advised not to tweak (up or down) more than a quarter grain at a time because the chances of missing your “sweet spot” are higher.

Some will say you don’t need blood tests and can go by how you feel. I’ve never done that and wouldn’t advise it. When taking NDT the blood test result to watch is FT3. I personally wouldn't advise going over the top end of that range.

Edited to add: that’s why I asked about how long was left between taking the last dose of NDT and doing the test. If the gap was less than a few hours, that FT3 result will be higher than it should be.

When I took Nature Throid I couldn’t get my FT4 off the bottom of the range but strangely don’t have the same issue with Armour. That said, Armour does not suit me nearly so well.

[Hidden in reply to Jazzw]

that’s so helpful, thank you so much. I hate how we are so reliant on these ndts that are subject to change… feels like we are forever on a knife edge 😪

[radd]

Relentlesssearch,

Bloods can be thought of as useless in that they don’t tell us what is happening on a cellular level but they are a useful guide to estimate our approximate dose., especially when we are introducing new meds/doses and symptoms often last long after we have hit our sweetspot. As Lalatoot has said your friend needs to be patient.

I would also say your friend has overshot her sweetspot with those elevated FT3 levels and excess can be very counterproductive, even prolonging recovery because of its negative consequences.

I would stick with two grains, believe it will bring recovery when conditions are right and set about investigating what is still wrong. Other factors to consider could be inflammation (are Ab’s elevated)?, does oestrogen balance with progesterone? Is serum iron sufficient as opposed to just ferritin levels? Has zinc been tested? (I was severely deficient after being left undiagnosed for years as apparently TSH uses zinc in its making). 

There is still much to work on and then more.

[Hidden in reply to radd]

It’s so hard to work out what will correct what. My friend has pcos as I have, but she has been totally well before on thyrogold, and her pcos normalised through optimising thyroid medication. I am similar, although I have never been well but I had hopes my progesterone etc. would improve, but I realise in some that imbalance can prevent thyroid hormones improving the situation.

I will let her know the consensus is to go back to 2 grains and wait… as painful as that is, it sounds like the right thing to do x

[radd in reply to Hidden]

Relentlesssearch

All hormones need each other as work together. The cause of PCOS isn’t known but many sufferers have successfully used inositol to correct hormonal imbalances. Have you or your friend tried it? 

[jrbarnes]

I'm back on NDT but I take 1 1/2 grains plus 20 mcg T3, and still raising the T3 slowly. You see I worked my way up to 2 grains before but the ratio wasn't right for me. It was too much T4 and T3 together but if I lowered the dose then it was too little. Everyone's needs are different and it also depends on a person's size and weight.