I have just stumbled upon this site, and am hoping that you knowledgeable people can help me out.
The short story: I'm undiagnosed, never been on any thyroid hormones. Feeling unwell for over 2 years - fatigue/tiredness, weight gain, hair loss (decreased hair density on scalp), loss of outer third of eyebrow hair, low libido, low mood, feeling cold - those are the main symptoms. GPs and Endocrinologist all say thyroid is fine and all numbers within range.
Pretty much everything else they tested was great, except Vitamin D which I am usually low on because I avoid the sun (very fair skin and burn easily), so I take a D3 supplement. The other thing that was apparently bad was my cholesterol, which the doctor said was high enough to go on medication immediately (I haven't, but she was very concerned at the numbers).
After reading lots to try and find out the underlying cause of these symptoms, I am wondering if it might be an underactive thyroid that is being overlooked by the doctors.
I would appreciate if someone could have a look over my blood test results and let me know what you think - do you think the thyroid might be struggling? Should I try to find a doctor who actually knows about thyroid function (easier said than done, I am told) to have a look at my numbers?
I have really hit a wall and am so tired of feeling tired, and getting nowhere with my health. Thank you for any help you can provide!
Blood Test Results:
18 Nov 2023
08:44 (Fasting)
TSH: 2.12 (0.4-3.5)
FT3: 3.9 (2.6-6)
FT4: 12.6 (9-19)
TPOAb: 0.6 (<5.6)
TGAb: 3.3 (<4.1)
Cholesterol: 7.4 (<5.5)
Iron: 22.8 (5-30)
Ferritin: 87 (15-200)
Magnesium: 0.83 (0.65-1.00)
Calcium: 2.27 (2.15-2.55)
4 August 2022
08:22 (Fasting)
TSH: 3.08 (0.4-3.5)
FT3: 3.5 (2.6-6)
FT4: 12.3 (9-19)
TPOAb: 0.7 (<5.6)
TGAb: 1.7 (<4.1)
B12: 517 (135-650)
Serum Folate: 28.2 (>7.0)
15 March 2022
09:50 (NOT Fasting)
TSH: 2.01 (0.4-3.8)
FT3: 3.7 (2.5-6.5)
FT4: 13.3 (10-22)
Cholesterol: 7.3 (<5.5)
Iron: 25.5 (7-26)
Ferritin: 183 (15-200)
Magnesium: 0.81 (0.7-1.1)
Calcium: 2.23 (2.1-2.6)
Vitamin D: 48 (50-150)
Folate: 35 (16-71)
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Thanks for your reply. I did get an ultrasound of my neck in November 2018. Nothing to do with tiredness, etc. I had noticed a kind of 'clicking' sensation when swallowing (still happens now), and Dr ordered an ultrasound. Nothing abnormal found.
I would say that not only is your thyroid failing, your pituitary doesn't look too good, either!
Lets start with basics:
TSH - Thyroid Stimulating Hormone - make by the pituitary to stimulate the thyroid to make more hormone. So, in theory, the lower the thyroid hormones - T4 and T3 - the higher the TSH. A euthyroid (normal) TSH is around 1, never over two (that shows your thyroid is struggling) and when it reaches 3, you are technically hypo.
However, the thing about TSH is that it fluctuates throughout the day. It's highest before 9 am, and at its lowest around midday. So, we always recommend having the blood draw before 9 am, on an empty stomach - because eating some things, and drinking coffee - can lower the TSH. And doctors only tend to look at TSH because they think it tells them 'all they need to know'. But it doesn't. And they don't even seem to understand what TSH is nor what it does.
T4 is basically a storage hormone that doesn't do much until it is converted into the active hormone, T3. A euthyroid FT4 would be around mid-range, with an FT3 just slightly lower.
FT3: 3.9 (2.6-6) 38.24%
FT4: 12.6 (9-19) 36.00%
With your latest results, you can see that your thyroid hormones are quite some way off 50% through the range, with the FT3 slightly higher than the FT4, which is not normal. And, with such low Frees, the TSH should be higher than it is (assuming that you did your blood draw before 9 am). But doctors wouldn't know anything about any of that. So, what that probably points to is a sluggish pituitary or hypothalamus. What we call Central Hypo.
So, what you need is an endo that knows about Central Hypo. Doubtful many GPs have even ever heard of it, let alone recognise it when they see it.
Nor do they know that high cholesterol is a symptom, not a disease that needs 'treating'. Usually, it's due to low FT3. And your FT3 is too low. So, you don't need statins, you need a doctor that will treat your hypothyroidism. But, don't worry about the cholesterol, it's not going to do you any harm. It doesn't cause heart attacks or strokes as doctors claim.
For your low vit D, it's not much good just taking vit D supplements. You also need its co-factor magnesium. Never mind the magnesium results on your blood tests, testing magnesium is not reliable. Just take some. Excess will be excreted. You also need to take vit K2-MK7 with it.
Your ferritin seems to be dropping, too. I would suggest eating more iron-rich foods, like liver once a week.
So, your symptoms all seem to point to hypothyroidism, with the high cholesterol and low vit D, but doctors know nothing about symptoms, so don't take them into account, I'm afraid. Sad, but true.
Thanks for your reply, greygoose. So frustrating as I have suspected a thyroid problem for about 2 years, but keep getting told it's fine. Tried different doctors, but hasn't helped. They all say the same thing, and instead want to send me to get a sleep study done, go to a neurologist, or a chronic fatigue clinic.
The information you have provided is very helpful - thank you. You mentioned that I need an endocrinologist who understands central hypothyroidism - do you think I need an endocrinologist specifically (rather than a GP who is knowledgeable about thyroid function)? I only ask because it is apparently rare aa hen's teeth to find an endocrinologist who will look past the lab ranges and take me seriously. Also, in a lot of my reading, I found people saying that they do better without an endocrinologist, as long as they can find a GP who actually understands thyroid function properly.
I agree that sometimes you are better off with a good GP than a bad endo. But, the problem with Central Hypo is that the pituitary makes a lot of other hormones, apart from TSH. So, to help a possible diagnosis, these other hormones need testing. And only an endo can do that. A GP can't - rediculous, I know, but there you are. But, of course, you should sound your GP out first, see if he knows anything about it and can help you find the right endo.
There are endos that know about CH, because we see people on here that have been diagnosed and treated for it by endos. But, I also agree they are as rare as hen's teeth! What I would suggest is that you write another post on here, asking if people know of any endos that know about Central Hypo in your area - or wherever you want to go. Put that in the title and then those that know will answer.
Ah right. I have no idea how things work in Australia. But, you're not the only Australian on here. I'm sure someone on the forum can help.
It's difficult to be convinced of anything, but it's worth a shot. Doctors world-wide only tend to look at the TSH - they don't know about anything else. So, if the TSH is in-range, they believe there can't be anything wrong - even with low levels of thyroid hormones like yours! The are all just terribly ignorant, I'm afraid.
But, tell me, what time did you have the blood draw for this test? Was it before 9 am? And, have you ever had your cortisol tested?
The pituitary makes the TSH to stimulage the thyroid to make more T4/T3. And it also makes a hormone called ATCH to stimulate the adrenals to make cortisol. So, if your early morning cortisol is low, that could be another indication that there's something wrong with your pituitary. Cortisol needs testing, ATCH needs testing. There are other pituitary hormones that could be low, too.
It's true that Central Hypo isn't as common as Primary Hypo, where the thyroid is failing. Doctors think it's very rare, so nobody teaches them about it in med school. But, they'd only have to read on here for a couple of months to realise that it's not that rare after all.
Primary Hypo, where the thyroid is failing, due to Hashi's, or other things, manifests as:
High TSH and Low FT4/3
Central Hypo, where the problem is not the thyroid but the pituitary (Secondary Hypo) or the hypothalamus (Tertiary Hypo) that is at fault, mantifests as:
Low TSH and Low FT4/3.
But, as doctors think that the TSH 'tells them all they need to know', and the have no idea about the FT4/3, think that a low TSH means all is well. And, it can be very difficult to persuade them otherwise.
But, your TSH is low-ish and your FT4/3 are also low. So, something is not right. It looks like the pituitary is not firing on all cylinders. Something is wrong with the feed-back loop. Either the hypothalamus is not getting the message to stimulate the pituitary. Or the pituitary is not getting the message to stimulate the thyroid.
Causes of Central Hypo can be a sever bang on the head, or severe bleeding during child-birth, or a benign tumour on the pituitary... But, you would need a head scan to see that.
Opinions vary over the best way to test cortisol, but we don't have much choice. An early morning serum test is a start, though. Yours is low, but not drastically so. And would be, anyway, with such low T3 results.
OK, so you have had other pituitary hormones tested. Which suggests that at least one of your doctors has suspected a pituitary problem, no? And they all appear to be ok. Low, but like your cortisol, not drastically low.
So, you could keep persuing that line of thought. Read up on Central Hypo - all the info is out there on the internet. Or, you could wait and see how things evolve. But, unless you get a pretty exceptional doctor, you're not going to get a diagnosis with those results, when doctors only take the TSH into account.
Those other pituitary hormones were tested by an Endocrinologist who had seen me for the first time and was doing a full screening of anything he could think of as a starting point to try and identify the source of my symptoms.
All those results came back (including the lowish TSH and the lowish FT3 and FT4), and he went through it all and declared it to be "unremarkable" and said there was nothing in those results to explain my fatigue, etc. He sent me back to my GP and suggested that I could benefit from going to a chronic fatigue clinic.
Thanks so much, greygoose, for your help with this!
Amazing how they can start out so well, doing all the right tests, and then fail to interpret them correctly.
Well, don't give up. And I really wouldn't recommend going to a chronic fatigue clinic! Eventually, those Free levels will surely go below range, and then they'll have to take notice!
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Blood tests - do I need TGAb and TPOAb checking?
Blood test results via Thriva
Latest blood test results (30/03/21)
Latest blood test results. Can I get some advice please?
