Hello, I know there is a wealth of knowledge on here and I am grateful for any advice anyone can offer.
My 12 year old does have some symptoms such as fatigue and thyroid was tested along with some other things such as iron, B12 etc. He has fairly low ferritin, fairly low B12 though not outside the range and normal vitamin D.
He has had four sets of thyroid results since January-
January- TSH 1.06, T4 10.33
April- TSH 0.91, T4 10.16
August- TSH 1.1, T4 10.5
October- TSH 1.2, T4 9.01
He has done thyroid antibody tests but these were negative, though he is yet again going to repeat these bloods and is doing the antibody tests again.
I'm concerned that in the most recent blood test the T4 has dropped even lower than before. He says that since the TSH is not elevated, no treatment is needed but he has agreed to write to Endocrinology and I'm waiting to see if they will see him.
Can anyone give any advice on these levels and how concerning they are? I don't really know what a truly low level would be and at what stage it would be reasonable to consider treatment?
I'm really worried that I should be doing more to advocate for him and just looking for any advice anyone can give. Thank you.
Hi wildpigeon, welcome to the forum. So sorry to hear that your son is having problems.
Before anyone can help you, we need to know the range for that FT4. Ranges vary from lab to lab, so we need the range that came with your son's results.
The TSH is, indeed, 'normal' - although we don't like that word here, because it's pretty meaningless. But, one has to realise - although doctors don't - that basing diagnosis and treatment on the TSH alone is risky, because the TSH isn't even a thyroid hormone. It is a pituitary hormone. And what they are doing is assuming that the pituitary always works perfectly, which it doesn't. If the thyroid can go wonky, then so can the pituitary! The are both only glands, after all. And, if the thyroid hormones are low but the TSH is also low, the problem could be with the pituitary and not the thyroid. But, we need that range to know for sure.
OK, so his FT4 is below range, and his doctor is an... not very clued up! The FT4 result is far more important than the TSH, because it is a thyroid hormone. And, that result is saying that the thyroid is not producing enough hormone to keep him well. And, yet, the TSH is not rising to compensate. So, it would very much look like the problem does lie with the pituitary or the hypothalamus. This looks like what we call Central Hypo.
Now, whilst I condemn your doctor for thinking that someone with a below-range FT4 doesn't need treatment, I can't blame him for not immediately thinking of Central Hypo as a diagnosis. Most GPs have never even heard of Central Hypo, much less come across a case in their practice. It is said to be rare, so doctors never even look for it. But, it's not really as rare as all that! We see a lot of it on here.
So, your son needs to see an endo that might know more about CH than a GP. And, hopefully, if your GP is consulting with endocrinology, someone might have the good sense to realise these results are far from normal, and the child needs to be seen. But, if no-one does, then you need to mention this possibility to your GP and insist that it needs further investigation. Because, if it is a pituitary problems, it won't just be the TSH that is low, it will also be all the other pituitary hormones. Is your son small for his age?
I realise this probably sounds hellishly complicated, and I don't know how much you know about the subject, so don't want to go into too much detail. But, if you have any further questions, please don't hesitate to ask. There will always be someone here to reply.
Thank so much for your reply. What you are saying makes a lot of sense. I was unclear how concerningly low the T4 truly is if that makes sense, as the Dr does not seem that concerned. I will definitely follow up and see if the Endocrinology referral has been accepted. He said something about how free T4 binds to protein (?) and in growing children it can appear low when it isn't truly low but I'm not too clear on what he meant by that.
To complicate things further, alongside these results my son has an elevated CK level, it went from a little over range to 2.5 times the upper limit of normal so after the most recent set of blood tests he is referring him to a Neurologist. I actually am much more keen for him to see an Endocrinologist but if it could be an issue with the pituitary then maybe I can discuss that with them.
I doubt he had much idea what he meant by that, either! lol Yes, thyroid hormone binds to a protein carrier to be transported round in the blood to wherever it's needed. But, he hasn't tested the bound T4, he's tested the Free T4 - which is what we need to know - and if that is low then he's hypo, never mind how high the bound T4 is. I don't think he has much understanding of thyroid. But, then, not many GPs do.
However, it often turns out that other speciatlities have a better grip on thyroid matters than the so-called 'experts'. So, yes, do talk to the neurologist about his results and concerns that it could be Central Hypo. He could possibly write to your doctor to explain a few things.
If that was my FT4, I would be very concerned. I don't know if you know this, but there are two main thyroid hormones: T4 and T3. T4 is basically a storage hormone that doesn't do much until it is converted into the active hormone, T3. It is possible, that due to the lack of TSH - Thyroid Stimulating Hormone - his thyroid is now making more T3 and less T4 to keep him alive. But, without the stimulation of the TSH it make it work, the thyroid cannot keep that up indefinitely. So, eventually, the T3 level will fall also. It would be a good idea if you could get someone to test the FT3, to see what that is like. And, don't be put off by being told 'it's not necessary'. They only say that because they have no idea what it is!
Good that he has no growth issues. That makes things easier.
Thanks for such a detailed reply. I’m incredibly grateful to you for taking the time. So basically from what you’re saying I’m right to be concerned and need to push for an endocrinologist referral. The Dr seemed to think he would be seen quickly by the Neurologist so I will hopefully have a better discussion with them. That’s interesting about T3 that definitely hasn’t been tested so far so I have no idea what it is. Is there such a thing as a dangerously low level of T4 or T3? A level below which there are serious effects? I can’t seem to find anything about that from my googling as I’ve tried to figure out how “bad” a T4 of 9 is.
Yes, I'm saying this needs further investigation. Your GP has been fobbing you off with the hope that he can blind you with science and you won't know any better. Doctors really underestimate the power of patient forums!
There is indeed a dangeroulsy low level of both T4 and T3. But, it would be impossible to say exactly what that level is. Symptoms can happen at different levels for different people. But, consider this: you cannot live without thyroid hormones. Every single cell in your body needs thyroid hormone to function correctly. When there's not enough - or even when there's too much - you can experience symptoms in any part of the body. The brain and the heart use the most thyroid hormone, so if there's not enough for them you can experience all sorts of heart-related and mental symptoms. And, the body will deprive 'less important' parts of the body in order to try and make sure the heart and the brain get enough. So, it can be very dangerous to have low levels.
Just for your information, a so-called 'normal' (euthyroid - i.e. when everything is going as it should do) level of TSH is around 1. But, it's only 'normal' if the FT4 and FT3 are around mid-range. That would not appear to be the case for your son.
Sorry to answer your other question, he is not small for his age, he is actually taller than average so no issues with growth.
Has he ever - low ferritin can be a sign, as can tiredness - been tested for coeliac? Or had a week or two where he hasn’t eaten gluten at all, and you’ve noticed a difference?
My son suffered low ferritin and tiredness and a high TSH for years until we tried him on a GF diet. His TSH is still higher than optimal but much lower than it was pre- diet - raised TSH can also be a sign of inflammation - and his ferritin has been normal ever since. (He’s had lots of other health improvements, too, that we would never had known could connect to gluten). He was negative for coeliac but his gastro told us that gluten sensitivity can have major effects on people - and so it turns out.
Sorry I just saw your further comment. Thanks so much for the recommendation. Yes those antibodies were checked and all fine. By fatigue I mean no stamina, exhausted by physical activity, tired after school. He’s had loads of illnesses over the past year. And a very recent thing, he’s started complaining of the cold, which he never did before.
Thanks so much for commenting. He did have a celiac blood test and it was strongly negative so that seems unlikely but I will bear it in mind given the effect it can have on ferritin. It’s great to hear that it helped your son.
Glad to hear it. Hope they tested for IgA at the same time, which is good practice but is often missed. The coeliac screen only works on those who have enough igA to create the antibodies for the test.
If it was a gluten sensitivity (not coeliac), a child could still have tiredness and low iron as symptoms, we were told by my son’s gastro. It’s possible. Just as (hypothyroid) people here who are not coeliac are advised to try GF diets, too.
My heart goes out to you. Nothing worse than you child not being well. Getting a diagnosis for CH is tricky. It took me 4 years, the knowledge of this forum and paying for a private Endo to finally be treated for the right thing.
Before that I had diagnosis of ‘menopause’, ‘depression’, ‘you will get used to it’ etc etc all from NHS consultants and of course my GP.
So best advice I can give you is to get the list of Endos from Thyroid UK, a full (private) blood test and take your child to see one of those Endos. A private Endo is much more likely to treat your son properly. It could be a long road, but getting the right treatment is definitely worth it.
Thank you that’s really useful information. I haven’t seen the antibody test results just was told they were normal so I will try to get hold of a copy to see which antibodies were tested.
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex..
However as vegetarian may need to continue separate B12 few days a week indefinitely
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
When supplementing B12 recommended to also take daily Vitamin B complex …..best taken after breakfast
IMPORTANT......If taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Thank you. I’m definitely going to start him on B12. With regard to iron, I should have clarified that these have been done and he doesn’t have anemia just low iron stores. They did do the full iron panel.
if any other members of family are also vegetarian strongly recommend getting full vitamin testing done
I should add he is vegetarian so we have started supplementing liquid iron. I haven’t yet started B12 as it’s a recent result and I’m trying to identify what is most suitable for his age.
Another little mention about his low vitamin results, this is a very common result when thyroid hormones are very low. Having low thyroid hormones just trashes vitamin levels. Then you get symptoms from low vitamins as well, so it's all a bit of a spiral.
You asked if low thyroid hormones are dangerous. Certainly it is bad for every part of your body, because every organ is strained by not having enough thyroid hormone. Effectively the hormone provides fuel and energy to every cell and organ. Without it they are like a toy when its battery is running low. Not able to do their proper job. Being low on thyroid hormones is not very deadly - we can live a surprisingly long time with no thyroid hormones, and people did live to adulthood and even old age before thyroid treatment was invented.
I would more call untreated thyroid illness disabling. Being low on thyroid hormone is similar to chronic fatigue, and over time other long term illnesses like heart disease and diabetes are more likely to crop up. But those are much more long term, and from what I've seen of early onset thyroid illness children tend to be more resilient to it, and you're more likely to have worse effects in 30s, 40s, and beyond.
Once your sons illness is treated, from a thyroid perspective he will likely be able to be very well, but may always be a little bit tired. I don't know enough to comment on pituitary illness in general, though. The pituitary impacts several hormones, including sex hormones, so you may have to look into all of those. I actually had quite good success looking up pituitary function in a school biology text book, so you may be able to find out some basics.
In the short term before he has access to thyroid hormone replacement I would suggest letting your son rest as much as he needs to, particularly encouraging good quality relaxation. Perhaps try relaxation techniques (such as mindfulness, alternative nostril breathing or other breath techniques, yoga nidra, massage) and epsom salt baths. My experience is that getting good rest makes all other symptoms feel a bit more bearable, especially if he is able to cut down on some of his usual activities.
It could be that the low B12 is affecting pituitary signalling. How long has he been vegetarian and does he have other neuro symptoms which have prompted the neurologist referral? If he has not been veg. for long, it would be better not to supplement until you have had full testing done, as it will skew the results. It may have just speeded up the underlying insufficiency rather than being the whole cause. My cousin's daughter had the same - long family history of PA and B12 D and she decided to become vegetarian and ended up with a deficiency clearly requiring treatment far faster than would have been normal had she had adequate body stores. Cheers
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