So a few people have been following my absolute disaster of a medical journey over the last year and I have finally got some answers so wanted to update and also ask a couple of questions from you lovely folk ☺️
I was initially diagnosed with adrenal insufficiency and put on low dose hydrocortisone but in July I had my 3rd short synacthen test which I failed but the specific way it failed suggested to the doctors that I'd probably failed it due to being on the hydrocortisone so they took me off it and redid my SST last week. They also did a full thyroid and pituitary check unfortunately without the T3 which is irritating.
I do not have adrenal insufficiency, my adrenal function has returned to normal but I have seen a private endocrinologist who specialises in menopausal issues and she has diagnosed me with something called sick euthyroid syndrome which she kind of explained to me as a sort of dysregulation of the thyroid gland.
She said that it's defining features are a normal TSH and a either a low T3 or low T4 or both.
I've been put on levothyroxine 25mcgs. They are starting me on a very small dose because I have a history of bad side effects from most meds.
I think the plan is to maybe get me upto 50mcgs.
I have been suffering a little bit of nausea and increased anxiety and jitterness since starting the levo. Will that settle down over time?
In the first appointment we didn't discuss supplementing with T3 or T4 but it's something I'll bring up at the next appointment when I'm settled on the levo.
Which one should I be pushing to add in first?
My results in July were :
TSH - 3.2
T3 - 3.7
T4 - 14
My results last week were :
TSH - 1.8
T4 - 12
T3 - they didn't test for it but my T3 is always either 3.1 or 3.7 and has been for years.
I just want a clear idea in my mind because I think adding in either T3 or T4 will be the next step.
Thanks everyone 🙏
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Lucy___
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A document containing a list of many of the abbreviations, acronyms and Latin terms you are likely to find when reading documents about thyroid. Don't assume an old copy is up to date!
hmm so I wouldn’t describe you as euthyroid looking at those results.
Have they tested for thyroid antibodies?
TPO and TgAb?
Normal population of actually euthyroid people have TSH around 1.0 (0.27-4.6)
What time of day was your blood draw?
You likely need much higher dose of Levo.
Increase every 8 weeks
Yes anxiety is a hypothyroidism symptom and look your FT 4 dropped between the two tests.
Now I'm optimally replaced, I notice low B12 also leads to bouts of extreme anxiety. Blood tests suggest my B12 is high but if I stop supplementing it drops like a stone within a week and takes a long while to replace reserves. Something else to investigate maybe?
What are your most recent vitamin D, folate, B12 and ferritin results
EXACTLY what vitamin supplements are you taking
ESSENTIAL to test BOTH TPO and TG antibodies at least once
If both are negative, get ultrasound scan of thyroid
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
VERY important to test TSH, Ft4 and Ft3 together
What is reason for your hypothyroidism
Autoimmune?
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Since you have previously been diagnosed with adrenal insufficiency and have been treated for it, the removal of treatment could be a hell of a shock to your body. Just in case this all goes horribly wrong I think you and your family, friends, and work colleagues should be made aware of the symptoms of adrenal crisis because without treatment it can be fatal.
she has diagnosed me with something called sick euthyroid syndrome which she kind of explained to me as a sort of dysregulation of the thyroid gland.
She said that it's defining features are a normal TSH and a either a low T3 or low T4 or both.
I think your private endo is a little confused. That sounds more like Central Hypo, which is a dysregulation of the pituitary or hypothalamus, rather than the thyroid. Unless you have been very ill or had surgery or some sort of trauma like that.
Why do I say that? Because they are very similar. But, your TSH is not 'normal'. Your TSH is saying hypo, yet not corresponding to your low Frees - at least I'm guessing they're low but impossible to tell for sure without the ranges. And, if it were sick euthyroid syndrome she wouldn't be putting you on thyroid hormone replacement because it should, eventually, correct itself.
That would also correspond to your adrenal status. The adrenals also need the stimulation of a pituitary hormone - ATCH - to produce cortisol, just as the thyroid needs TSH. You said you 'failed' your SST so, I'm assuming your ATCH is low - even though it's not actually a pass or fail type of test, so I don't know what failure actually means. However, you really haven't given us enough information to be certain about anything, but that what it sounds like to me: an ailing pituitary.
Glad you wrote this GG because I was contemplating writing something very similar.
Given the circumstances here, a pituitary issue seems far more likely.
I’m also concerned that starting on a dose of 25mcg levothyroxine is more likely to make things worse rather than better. Just enough to turn off Lucy___’s remaining thyroid function feedback loop, but not enough to replace what it was managing to make.
Hi guys, sorry I don't think I was clear in my post, she didn't put me on the levo and wouldn't have done but another endo had put me on it and so she said she was happy for me to continue it. But no, she wouldn't have put me on it herself but she said it was a reasonable course he took.
I failed the SST in July after being on the hydrocortisone but they did a full pituitary assessment last week after being off the hydro for 6 weeks and everything was completely normal.
I had another SST in this assessment and it came back as a pass with amazing values - 535 baseline, 703 at 30 mins and over 800 at 60 mins and the one in July which I failed was 341 baseline, 396 at 30 and 448 at 60 so there has been a huge improvement since I stopped the hydro. My prolactin was also back to being completely normal.
My aldosterone was normal too so they literally at the moment can't find any evidence in my bloods of adrenal insufficiency.
It is a puzzle that my cortisol levels are so good now as they'd been declining for over a year. And then all of a suddenly they are amazing, bordering on high. I can't get my head round why they would so suddenly improve but I guess the hydro must have been suppressing my adrenals.
I do wonder if 4 months on the hydro have given my adrenal a rest and chance to recover and that's why they are normal now but I don't know.
The new endocrinologist that I'm seeing does want to periodically check my adrenal function, I think shes going to do it every 6 months or so because she said that AI can start slowly and incidiously and because my case has been a bit weird with odd results, she jusy wants to be prudent and keep on top of it.
I suspect that I probably have central hypothyroidism from a hypothalamus cause or maybe pituitary but no doctor has ever suggested central to me so I'm not sure how I can broach that with anyone. Does it matter if the treatment is the same?
Looking at bloods over the last 12 years or so, my TSH has jumped about alot between 1.8 and upto 6 at the highest but my T4 has consistently been around 12/ 13 /14 (ref range I think is 10 - 22 on that one) and my T3 has always consistently been either 3.1 or 3.7. I think it once went up to 4.2 but that's it (ref range 3 - 6.8).
Does anyone know what it is that would cause my T3 to be consistently low but everything else kinda ok? Is that central hypothyroidism?
I've had my antibodies tested and they were negative so no autoimmune issues so I literally don't know what could be causing it. Maybe I'm just a quirk because I've read that nearly all hypothyroidism cases are autoimmune in origin.
I'll ask my endo about central hypothyroidism next time I see her.
I am really aware of the risks of adrenal insufficiency and I do watch out for warning signs and do have some hydrocortisone at home.
So, how long have you been on 25 mcg levo? From what you've written it sounded as if you'd only just started it.
they did a full pituitary assessment last week after being off the hydro for 6 weeks and everything was completely normal.
And what did that assessment consist of? I don't think there is a standard procedure for that, depends on the doctor. So, we really need full details to understand what's going on. And what the HC has got to do with it?
We need to know what was tested and what the results and ranges were.
I had another SST in this assessment and it came back as a pass with amazing values - 535 baseline, 703 at 30 mins and over 800 at 60 mins and the one in July which I failed was 341 baseline, 396 at 30 and 448 at 60 so there has been a huge improvement since I stopped the hydro.
The problem with the SST is that no-one really seems to understand exactly what they're testing for. Basically, the idea is that the test is done when cortisol is found to be low, to find out why it's low. You test cortisol levels to begin with, then measure ATCH levels - but they don't always do that - did they test your ATCH? Then inject ATCH and see if the adrenals respond or not. If they respond then the problem is lack of ATCH - a pituitary hormone - and the adrenals are fine. If they don't respond then the adrenals are failing and that is why your cortisol is low. So, it's really not a case of passing or failing, but of finding the cause, but doctors seem to have forgotten that, these days. But it's really weird that your adrenals didn't respond to stimulation the first test, but did on the second.
I can't get my head round why they would so suddenly improve but I guess the hydro must have been suppressing my adrenals.
But surely you weren't taking HC before you had the first SST? I had the impression that you started HC because your adrenals didn't respond to stimulation. It wouldn't make any sense to do an SST whilst you were taking HC.
So, how did you take your HC? You said a low dose, but how much was that low dose? And did you take it spread out through the day or all in one go first thing in the morning.
If you spread it out through the day, it is possible that it did suppress your adrenals. But adrenals are not like thyroids. Once they've been suppressed, they don't usually come back to life.
I do wonder if 4 months on the hydro have given my adrenal a rest and chance to recover and that's why they are normal now but I don't know.
That would have happened if you'd just taken your HC early morning, when their work-load is the heaviest, then left them to get on with it for the rest of the day. But, in that case, you wouldn't have had Adrenal Insufficiency but Adrenal Fatigue. And doctors usually insist that Adrenal Fatigue doesn't exist.
FT4: 12 pmol/l (Range 10 - 22) 16.67%
FT3: 3.1 pmol/l (Range 3 - 6) 3.33%
If those were your typical blood test results then you were very, very hypo! Those are hypo results. So, your TSH should have been a lot higher than 6. Those results are typical of Central Hypo. Putting you on only 25 mcg levo was a nonsense. With those results, and at your age, you should have been started on 50 mcg, a normal starter dose for adults, retested after six weeks and increased to 75. Starting on too low a dose can make things much worse, rather than better.
Does anyone know what it is that would cause my T3 to be consistently low but everything else kinda ok? Is that central hypothyroidism?
Your FT4 and TSH weren't any kind of ok! An OK FT4 would have been around 50% through the range. And an OK TSH would have corresponded to your FT4/3 levels. Yours doesn't.
The FT3 is supposed to be slightly lower than the FT4 percentage-wise. With your results, the gap between them is slightly too large, but you don't really have enough T4 to convert, and most T3 comes from conversion, even within the thyroid itself. Raise the T4 level and the T3 should also rise. But, you're only on 25 mcg T4, so you can't really expect to have much T3.
But that has nothing to do with the Central Hypo itself. It's to do with being under-replaced hypo. In other words: your doctor's fault.
I've had my antibodies tested and they were negative so no autoimmune issues so I literally don't know what could be causing it. Maybe I'm just a quirk because I've read that nearly all hypothyroidism cases are autoimmune in origin.
Well, you can't really rule out Hashi's on the basis of one test of just one of the Hashi's antibodies. There are two: TPO antibodies and Tg antibodies. Even if the TPOab are negative, the TgAB could be high, indicating Hashi's. Also, antibodies fluctuate all the time so just because they were negative today, doesn't mean they were yesterday nor that they will be next week.
Autoimmune issues are the main reason for hypothyroidism in the Western world, but there are plenty of other causes. And your cause would appear to be a pituitary/hypothalamus problem. And there are no antibodies for that. So, not a quirk at all, just not main-stream hypo. Treatment is always the same, anyway, whatever the cause: thyroid hormone replacement.
However, the problem with Central Hypo is that the pituitary doesn't just produce TSH and ATCH. It produces a lot of other hormones too, and they could also be low. Human Growth Hormone, for example, and boy! you don't want to be low in that! So, they need testing. Is that what you meant by a pituitary assessment? Testing the other pituitary hormones? If so, which ones?
You ask does it matter, the cause, if treatment is the same?
Yes and no.
The cause doesn’t matter regarding the treatment. However, once you’re on a stable dose your doc will use TSH to monitor and adjust your dose. If the cause of your hypothyroidism is central then your TSH will never match your T3 and T4 levels, so at each blood test your doc will try to reduce your dose to get the TSH back into range. If this happens you’ll feel iller and iller, so then it is worth getting a proper diagnosis, if only to get them to test T3/4 and ignore the TSH.
I was just about to say exactly the same, central hypo should never be dosed on TSH because its not a thyroid problem, but a pituitary/ hypothalamus issue.
Although its treated with Levo I think is very important to get the diagnosis correct and to leave dose changes to a knowledgeable Endo, not a GP who has probably next to no idea about CH.
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How long until I can re-introduce thyroid meds?
Update #10: The Adrenal Gateway
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