Have posted previously in Jan and was advised to get a private test after a bad routine (but needed as been unwell for months) phone appt with Endo.
After speaking to his secretary the Endo said repeat test with extras. After waiting more than a month I have now got the following path ‘headlines’ verbally (not all results in writing yet).
Been on Levo 33 years (now just 50mcg with Lio), Lio for 20 on & off due to supply problems. (20mcg daily)
TSH = 2.8 (down from 5.x in Jan 24, can’t recall x)
Free T3 = 8
Free T4 = 7.9
Cortisol (requested by Endo this once) =2.17 (1.85-6.24 is normal morning range).
Also having heart problems (am comorbid with Ehlers Danlos & neurodivergent, i.e. anxious most of the time).
I know it’s not a full picture but does this suggest anything please?
All vague ideas based on changing numbers against same daily routines and feeling lousy welcomed.
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Hi Jaydee, it was a NHS Path lab draw about 10am. I take quality vits as long term vegan but they won’t be on the results as just an NHS test. Last doses were around 6:30am.
As mentioned, that’s the only info I have as asked on a phone call. No other levels given (but prolly not tested either due to NHS minimal testing)
Oh hey! If you took thyroid hormone replacement 4 hours before your blood test then that will make it impossible to evaluate exactly what your status is, and more so if your last replacement dose time was different for previous blood tests, then the results are not comparable.
By the way - I love your analogy to the quadratic equation and love your “hypothesis “ pun in your last post even more 😀
Managing our thyroid health indeed requires logic and consistent scientific method to decipher!
Take a look at your last posts replies, and the things that have been repeated here in this post. There are some basics that have been found to be best practice in the humble opinion of many on the forum that have pointed us in the right direction. We are all very different but there are some things that apply equally to all of us as well, and the replies reflect that.
Let us know what you plan to do next and how else we can help!
Ah! I generally do everything the same - if it’s under my control - so that’s a “control” factor I guess ? Think the private tests are necessary if I can get them done at home ok. Thanks again.
Vitamin levels should be tested at least yearly, vit D twice a year until you know how much you need in the seasons.
Thousands of members here buy private tests to make sure they know levels and to feel well.
Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Thanks Jaydee. Was all for getting a private test but hit a wall with how to get a draw to send. I rang round and couldn’t find anywhere that would accept helping me get a private test. I live in the sticks so when the endo said he’d look again, I just took that.
It’s not a cost objection, just a logistics brick wall that I couldn’t get round to get a private test performed.
We definitely need ranges, but I am pretty sure your FT4 dropped even if ranges are different than your last results. In any case it's a possibility that it’s in the “too low” ballpark. And it’s possible your T3 is too high.
But we really need to see results with ranges not only for TSH, FT4, FT3 and Vit D, folate, ferritin and b12. Saying the results are “ok” or “in range” is not enough for hypo folks. We need different levels than euthyroid people and there is a lot of fine tuning needed.
Also when and how you take the blood test can have a big impact on results. So you need to be consistent every time. Are you?
You mention in your last post you take a multivitamin. We don’t recommend multis, as they always have too little of what we need and too much of things we don’t and some things that can do harm (like iron that blocks thyroid hormones and other essential vitamins, or iodine which can do more harm than good.)
You are likely at the point where you can’t ballpark things anymore.
Our thyroid status is the most complex and delicate balance from head to toe, from the surface if our skin, and deep into the smallest cellular processes.
Hi Falling, thanks. Ah - like I mentioned, I don’t have any more info at the mo due to asking Endo secretary for whatever numbers she had. That’s all I got. We’re talking bare bones NHS ! I take Solgar multis, a methylcobalamin B12, D3, gentle iron, and Solgar folate. I might be able to obtain my gen NHS check up bloods but only recall b12 as I tell them I’m vegan.
My turning to you knowledgable folk on here is due to not being able to get any sense out of the endo who won’t listen to or answer questions with any degree of interest.
I appreciate the ball park approach is rough but I understand the quadratic equation-like variability of thyroid management; in that if TSH how up or down then x, but if Free t3 goes up or down then y , then if FT4 is z and so on.
My frustration with GP and rubbish Endo is to do with not even attempting to look at the trends and notice what’s happening in the last year or two despite being a long term hypo thyroid patient.
For a start, it contains iodine which you do not want unless you have been tested and found to be deficient. And, even then...
It contains folic acid and cyanocobalamin, which are not the best absrobed forms of folate and B12.
It contains copper, which shouldn't be taken unless tested and found to be low.
It contains vit D2, instead of D3...
I could go on but I'm sure you get the picture. Just a huge waste of money.
Do you take your iron with vit C, at least two hours away from everything else? Iron will block absorption of most other things.
Do you take your vit D with vit K2-MK7 and magnesium? The three work together.
You would probably be better off taking a good B complex (e.g. Thorne Basic B) rather than taking to isolated b vits, because they all work together and need to be kept balanced.
I take a methylcobalamin separate B12 on top of Solgar VM 2000 (or whichever comparable one of theirs in on offer such as the women’s one), D3 separately, plus Solgar Folacin 400Mcg, gentle iron, mag citrate sometimes, a good B50 sometimes… I take the multi to give me a baseline for all the supplements I don’t take separately. I don’t see it as wasting money on vits, it’s a convenience so I don’t have to take 20 capsules or pills 😄. Also I used to work in a health food store for years before going into NHS public health so know which ones are more absorbable, better quality etc.
I take the multi to give me a baseline for all the supplements I don’t take separately.
But you're taking things you don't need, like iodine. And that is never a good thing - especially taking iodine when hypo. Do you know that you're getting about 42 mcg iodine from your thyroid hormone replacement (T4+T3)? Plus what you get from your food. And that at a time when you need less iodine, not more. So adding in another 37.5 mcg is probably not a good idea. And do you know if you need copper? Excess copper is not good, either. Taking copper you don't need will lower your zinc, and that could be one of the reasons you feel lousy.
And the one I'm looking at contains calcium. Doubtful if you need that, and excess calcium builds up in the soft tissues and arteries. And it contains soy protein, which is not a good idea for hypos.
No-one is suggesting you should take 20 pills, and I doubt if you need to, but taking things you don't need could be ten times worse. You could be doing yourself more harm than good.
Well, you said all ideas welcome. And that is my idea: stop the multi and only take what you need.
Yes, point taken, thanks. Fair enough. Aside of not taking micronutrients which are muddying the waters, is there anywhere I could look to figure out what’s happening when TSH drops but FT3 & FT4 go up please?
My concern is my levels are all over the place and feel crappy but GP or Endo are being unhelpful or clear about why.
is there anywhere I could look to figure out what’s happening when TSH drops but FT3 & FT4 go up please?
Well, that's what is supposed to happen.
TSH - Thyroid Stimulating Hormone - is a pituitary hormone which the pituitary produces when it senses that there is not enough thyroid hormone in the blood. When thyroid hormone levels rise, the pituitary senses this and reduces production of TSH. So if TSH is dropping it's because the pituitary considers that you don't need it anymore - or not as much as before.
What do you mean by your levels being 'all over the place'? Do you have Hashi's?
Hashis? Maybe. I was only told I was “hypothyroid” 33 years ago, no further discussion or dx. I have inflammatory type symptoms and other systemic things going on, but u also have Ehlers Danlos so maybe it’s Hashis, or might just be the EDS.
I mean by “all over the place” that although I take my pills and supplements at the same time, my TSH (& presumably FT3 & 4) is markedly different each time it’s tested, and that’s been getting more pronounced in the last couple of years. I’ve been especially feeling rubbish in that time but there’s no NHS insight despite me asking time and again.
Well, they can't tell you what they don't know. And they know hardly anything at all. But...
Are your blood draws always at the same time of day?
Do you always get your FT3 and FT4 tested? Or is it usually just TSH?
If you're having your FT4 and FT3 tested, do you always leave a gap of 24 hours between your last dose of levo and the blood draw, and 8 - 12 hours between last dose of T3 and the blood draw?
Do you always get a print-out of your results for every blood test you have?
I take my pills and supplements at the same time
Do you mean you take your levo, T3 and nutritional supplements all at the same time?
So, is your TSH going up? Or going down? If it's going up, it means you need an increase in dose. Certainly with a TSH over 2 you need an increase in dose. It's not realistic to think you can stay on the same dose forever because there are so many variables that can affect your needs.
If your TSH is going up and down, it probably means that your doctor is dosing by the TSH, and that is always wrong. It puts you on the TSH see-saw: TSH goes down, dose is reduced; TSH then goes up, dose in increased again; so TSH goes down and once again dose is reduced... It's never ending.
Or, of course, it could mean that you do have Hashi's - Autoimmune Thyroiditis - but you would need your antibodies tested to know that. Hashi's is where the immune system slowly destroys the thyroid, mistaking it for the enemy. and the constant attacks on the thyroid mean that thyroid hormone levels can fluctuate a lot, going from hypo to false hyper. with the TSH slowly tagging along behind. But that fact seems to be beyone the comprehension of most doctors and they never quite undestand that that is what will happen if you have Hashi's. They certainly can't explain it to the patient! So, next time you have a blood test, ask for your TPO and Tg antibodies to be tested.
Ahh, GreyGoose, you are a star! 🌟The Hashi’s explanation there; that makes SO much sense, as my readings have been up and down even though I’m a fussy autist who tries to do things the same in routine (where possible). You’ve given me more clarity and insight there than I’ve had in 33 years from even the Head Honcho Endo (and that was yonks ago)! Thats wonderful to have a feasible reason for the chaotic levels and health. Thank you SO SO MUCH! 🙏
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Results to interpret please! So confused now 
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Please help me interpret these results!
