Hi, I have an 18 year old daughter who is suffering from chronic fatigue (amongst other symptoms such as very low immunity, acne and awful constipation/stomach problems, hair loss and elevated LDL cholesterol). She's currently so ill that she's had to withdraw from her A levels and sadly won't be able to start Uni in the Autumn which is devastating for her.
I've posted some previous blood tests results about a month ago (from Medichecks) and I received some very helpful advice about a possible diagnosis of central hypothyroidism. Since then we've had more blood tests carried out and she has also been seen by an endo. Her most recent blood tests are as follows:
TSH - 1.54 (carried out at 4.30pm)
FT3 - 3.4 (3.1-6.8), her level was then tested a week later and it was exactly the same!
FT4 - 12.7 (12 - 22)
Thyroid antibodies tested previously and all normal
Vitamin D - 119 (50 - 200)
Ferritin - 75 (13-150)
Active B12 - 150 (37.5 - 150)
Folate - 12.23 (no range given)
9am Cortisol - 242
Short Synatchen test - base level 170 (at 11.15am) increased to over 600 an hour later. ACTH - still waiting for this result, but endo says it will be fine as she passed the SST with flying colours.
IGF1 - 37.9
All female hormones were in range when tested although she does have very irregular periods.
We assumed that her endo would diagnose her with central hypothyroidism, however all she's really said so far is that her thyroid hormones look a bit sluggish. As her females hormones and IGF-1 have come back as normal she doesn't think she has hypopituitarism but she seems very unwilling to offer any other suggestions as to what else might be causing her chronic fatigue and other problems. Her letter to our GP stated "this young lady is convinced that her problems are related to low thyroid levels"!!
She has been willing to give my daughter a trial of Levothyroxine, with 25 grs as a starting dose, but has advised us that if it doesn't work we would be able to rule out a problem with her thyroid. We are pretty sure that many of my daughters problems are caused by low thyroid levels - her vitamin levels are very healthy and she also has a pretty good diet, so I don't really know where we go from here if our endo advises us that her chronic fatigue isn't caused by hypothyroidism. We're very concerned that she might end up with a diagnosis of CFS which would mean that no one would have to provide her with any further help!
I'd would love to know whether anyone has any thoughts on these results and where we might go from here. We're aware that her 9am cortisol result was pretty low (242) but as she passed the SST, our endo doesn't think it's an issue.
Many thanks for your help.
I’ve just read previous posts and seen the earlier blood test results which showed FT3 and FT4 to be either very low in range and occasionally under range. I completely get why this set of results is disheartening—while not wishing your daughter to have central hypothyroidism it would have been so much more “helpful” if these results had also had FT3 and FT4 under range wouldn’t it?
I’m not sure if you’ve posted the history before—but when did you first become aware something was amiss? Has your daughter always had low thyroid-type symptoms or did this follow an illness or an accident of some kind? Has she been unwell like this for long?
Thank you for your reply! Yes, the results we did with Medichecks several weeks ago showed below range FT3 (2.84) and FT4 (11.4), so it was quite frustrating when the tests carried out by the endo showed that they were in range, although only just!
My daughter has suffered from low energy/fatigue since she was about 12/13 years old. She started having bowel problems at the age of 14, and as with her fatigue, everything has worsened significantly in the last year or two. We're not aware of any accident or serious illness, she did suffer from severe and recurrent tonsillitis as a child and some blood tests we did several years ago showed that she had antibodies for EBV virus (glandular fever) although we're not aware that she ever had glandular fever. She does pick up infections very easily and for the last few months has been suffering from an intermittent sore throat, ear ache and headache, particularly in the morning. It's all a bit of a mystery......
Ah, so it coincided with that marvellous thing called puberty? If this is central hypothyroidism, that probably makes a lot of sense—all hormones work together and there’s a fine balancing act in particular between oestrogen and thyroid hormones.
Has the doctor done any tests on her pituitary function? Prolactin? ACTH? Might also be worth finding out whether her oestrogen, progesterone, LH etc are doing what they should be doing. If there is a pituitary issue, it might not only be affecting her thyroid, you see.
The other thing that occurs, given you’ve mentioned bowel issues, is coeliac disease? Is that something you’ve considered? I see her vitamin and mineral levels are pretty good at the moment—I assume you’ve been working on them (which ironically is probably why the thyroid hormone levels are slightly improved).
Sorry, I’ve just realised you’ve mentioned some of what I’ve asked about already, doh.
But prolactin levels might be interesting? If her pituitary is producing too much prolactin that would cause all sorts of issues from low thyroid hormone levels to irregular periods—and headaches…
No worries, thank you for taking the time to look at her results, its much appreciated. I've just checked her prolactin and it was 160 (102 - 496) so pretty normal.
My daughter has been taking supplements all winter so I'm not sure this had any bearing on her improved thyroid levels. We have been making sure that she's eating really well so this might have made a small difference - she's never dieted or restricted her food intake but with her ongoing bowel issues she often feels full very quickly and so doesn't always eat as much as the rest of us.
We bang on here a lot about improving ferritin, B12, folate and Vit D etc because every one of those things is involved in either the production of thyroid hormone or in the conversion process of T4 to T3. So yes, the improvement in her nutritional status is almost certainly improving her thyroid hormone levels (and lots of other things too).
It’s good that her prolactin levels are ok—although maybe worth checking again at some point because a pituitary gland that was pumping out too much prolactin would have been a explanation for many of the symptoms your daughter has. I’m glad it isn’t, don’t get me wrong, but every time you rule something out there’s a moment of relief followed by, “So what is it then?”
Sigh.
Right. Back to diet. So, on the one hand, it’s good that nothing’s been cut out or restricted because that makes doing a test for coeliac disease easier, if that was something you might want to consider? It could be another thing to rule out, because gluten sensitivity leads to poor vitamin/mineral absorption leads to poor thyroid function…
I still think you’re probably right with your guess of central hypothyroidism but it sounds like your doctor’s done most of the tests which might (for them at least) rule it out.
I don’t agree that taking 25mcg levothyroxine would be diagnostic though. It’s far too low a dose. I’d suggest 50mcg as a minimum to see if it might make a difference.
Many thanks for your reply. I've just checked back over her medical records and she tested negative for coeliac disease when she was 12 - I believe this was the first time we went to the doctors to request blood tests as she was absolutely exhausted and struggling to cope with school work.
We're keeping our fingers crossed that the endo will increase her levo to 50mcg fairly shortly.
OK. Good that it was checked. But just so you know.… coeliac disease is a sneaky thing. You don’t always get a positive result the first time around. Plus, annoyingly, there’s such a thing as non coeliac gluten sensitivity—negative for coeliac, still completely intolerant to gluten.
What about other things? I’m wondering if the bowel thing is a clue in its own right. Anyone considered Crohn’s Disease?
Or endometriosis? That can also start causing bowel issues from puberty onwards.
Chronic illnesses lower thyroid hormone levels unfortunately.
That's interesting about coeliac disease....perhaps we should have her tested again although she eats very little, if any, wheat as she finds it quite difficult to digest.
We've never thought about Crohn's disease. She has been under the care of a gastro for a couple of years but all he's done is diagnose her with a lazy bowel/slow transit constipation and prescribed laxatives. She has had calprotectin testing done which I think rules out any inflammation in the gut.
From what I remember (nurse a very long time ago now
) calprotectin is good at detecting IBD, so yes, probably not likely to be Crohn’s. But it’s less good at detecting Coeliac Disease I think. Not sure why.