I was hoping someone could look at my son’s labs and give me their thoughts please. He’s been having vague mysterious symptoms over the last 4 months and we are searching for answers. He’s been very tired, pale, anxious, emotional, stomach issues, flushing, etc. He has had many blood tests and scans and so far the only thing that has turned up is a morning cortisol in the lower part of the range. Negative for Addison’s and he passed the ACTH stim test. I was wondering if he looks like he might not be converting T4 to T3 very well? All of his antibody tests for thyroid were negative.
Edited to add that his total T3 has historically been double what it is now.
Thank you!
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Msmustang1981
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I just attached a new pic of his antibody labs. His vitamin d was considered insufficient, so he’s now on 50,000 injections once a month and is due for a re-check. B12 he supplements so it was over range. Folate was high in range. Ferritin was 98.
Thanks for your thoughtful reply. I thought his conversion was poor too which could explain his multitude of symptoms.
He has not been diagnosed as hypothyroid - his endo said subclincial at best. When I asked about levothyroxine, I was told that his free T4 is already at the top of the range and that meds would push him over.
I am hypothyroid and could not tolerate levothyroxine so I take T3 only and feel perfectly fine. I’m wondering if he would benefit from that too? Especially if T4 is already had the high end of the range?
He is definitely suffering with symptoms but these endos cannot get out of their own way and only pass him along to another specialty.
I need high dose T3-only so I understand where you are coming from
My thoughts are that he needs T3....like you.
I suspect he has the Dio2 polymorphism which impairs conversion...in my case I have inherited this from both parents ( homozygous) which has a greater impact.
Are you able to have him tested for this? Are you in the UK? It proves he would benefit from T3.....though that should be obvious to an endo from his labs!!
In his case, like yours and mine, levo is not the answer and he needs to avoid over range FT4 which can cause other problems. In that, the endo is correct but he is not extending his thoughts to produce an answer. His FT4 is 83.33% through the ref range so in theory there is a little room to try some levo.....but unlikely to be enough.
Are you prescribed T3, or like me, do you have to self medicate?
His endo had glaring gaps in their knowledge if he is missing all this. Your son is not sub clinical, he is hypothyroid.
Is your son an adult?
For good health every cell in the body must be flooded with T3 by way of a constant and adequate supply....looking at his low FT3 level this is not happening.
A further clue is your experience, it looks as if he has inherited your problem. cannot tolerate levo and therefore needs T3!
Ask his endo to give him a trial of T3, they are often more agreeable to that.....his improvement should prove the point!
My son is 17 and we are in the U.S. I’m not sure if they test for that gene or not here, but I do know how much better I am on T3! Thankfully my endo prescribes it.
I have actually had my endo evaluate him for all of these symptoms and she didn’t see an issue which is shocking. However she did order the ultrasound he had yesterday that showed a small, heterogeneous thyroid gland which to me indicated it could be failing or being attacked with antibodies.
I have more than enough T3 to self medicate him to see if he gets any symptom improvement. I remember starting very low and slow. I was thinking of starting him on 2.5mg and increasing by 2.5mg every two weeks. Thoughts?
His symptoms are 24/7 heart palpitations (cleared by cardiology), pale face, hypoglycemic feelings (normal glucose), low BP, feeling dehydrated, fatigue worse upon exertion, digestive issues (cleared by GI), bursts of anxiety and tears, and just an overall “off” feeling. Low in range morning cortisol, too, but passed the stim test and negative for Addison’s.
Thanks again! It’s so tough on my mama heart and trying so hard to get him answers.
I'd be inclined to start him on 2.5mcg T3 and titrate up slowly then when he improves show his medics the proof!!
As you know T3 is a vital hormone I don't understand why medics don't accept this....they seem terrified of it
When I started self medicating T3 my GP thought I was killing myself.....doesn't say anything now that I proved the point!!
You clearly know your stuff....he is lucky lad. I have 2 sons, now in their 40's so I know what you mean by your "mama heart". The younger one is now showing signs of failing thyroid.
I agree with your thoughts on his u/sound results.
Hi DippyDame. Can I pick your brain again please? My son just had repeat thyroid labs done 3 months after the ones I showed you earlier. It still looks to me like he isn’t converting well. His FT4 is at the top of the range but FT3 and Total T3 seem low in range. Still not medicated with thyroid meds. My biggest worry is what is causing the 24/7 palpitations and anxiety/crying spells. Do you still think it could be the low T3? Every doctor sees the high in range FT4 and tells me he is close to hyperthyroid, but I know that cannot be without high FT3. Thank you!
His FT3 is only 41.18% through the ref range with FT4 at the top of the range.
We aim to have both Frees roughly approaching 75% through the ref range.....with the caveat that e are all different
If he was close to hyperthyroid his FT3 would be over range....FT3 being the active thyroid hormone. This is not the case.
His doctor is missing the point as you recognise.
High FT4 with low FT3 indicates poor conversion as you recognise.
That low FT3 needs to be addressed!
His high T4 is likely to cause rT3 which is the body's way of recycling excess T4, it is transient and, in this case, only really serves what we already know....his body is not using T4 as it should...that is, he is not converting it to T3 and as a result it is accumulating as high FT4
Taking exogenous T3 would naturally reduce both TSH and T4 but imporantly would raise his T3 ....the lack of which is causing his symptoms.
I'm not a medic, this is based on my own research which proved my conversion was poor having inherited genetic faults from both parents.... impaired Dio2 function causing impaired T4 to T3 conversion
Whatever the cause of his low T3, the treatment is the same.....T3.
His doctor needs to recognise this and treat him accordingly.
The brain needs a lot of T3 .....and the Dio2 is responsible for the conversion of T4 to T3 in the brain.
I don't know how endos approach this in the US but the principle is the same....add T3 to replace what is clearly deficient
For good health every cell in the body must be flooded with T3 by way of a constant and adequte supply.....his body doesn't appear to be achieving this.
I became very unwell and was struggling to function until I introduced T3 in a therapeutic level. I now need high dose T3-only
My thyroid journey is related in my bio.
I hope this makes sense and goes some way to helping your son.
Thank you so much for confirming my thoughts and suspicions. Now that we have the repeat labs, I am going to start him on 2.5mg of T3 this weekend. I so appreciate your insight! Thanks!
Hi DippyDame! I do hope this finds you well! I was hoping I could ask you another question to confirm my thoughts?
My son has been on 5mcg T3 only now for 9 days - morning only. The first 6-7 days he showed great improvement. His ongoing symptoms were about 75% gone if not more. Yesterday (day 8) he said he started feeling like he was running out of T3 by the afternoon and the symptoms are slowly returning more today. Do you think I should have him add in 2.5mcg or 5mcg? If so, should I have him add an afternoon dose or add it to his 5mcg in the morning? I am the type that takes my full dose once a day. I know everyone is so different and I am not sure how to have him increase? Treating myself is one thing but I am constantly second guessing myself when treating him.
I can’t think of any other reason the T3 would help alleviate all of his symptoms unless he clearly needed it, right? His endo is still against me treating him but symptom relief is very telling in my opinion!
My thoughts are that he needs T3 and probably quite a bit more than 5mcg.
Initially his body responded well to the 5mcg but in time, and it's usually up to a week, symptoms started to reappear as the body sensed it needed more T3
There are scientific explanations for this but right now I can't recall ref papers off hand!!
Like you, I take my T3 in a single dose....but at bedtime.
While splitting adds the hormone throughout the day to the serum, that hormone does not become active until it reaches the nuclei of the cells. This is crucial because it stays in the cells for a few days and is released in "waves" as it is required.
For this reason I'm not a follower of splitting the dose and think that a single dose works well so long as it is adequate.
Your son is 17 and I see no reason to split his dose....but you must decide that.
5mcg clearly isn't adequate
You could add 2.5mcg to his dose every 2 weeks until his symptoms resolve and he shows no sign of overmedication eg fast resting heart rate, anxiety, hand tremors, heat intolerance etc.....you will know the list from your own experience!
I'm afraid medics/ endos are not all au fait with thyroid disease. The endo I saw was clueless, he told me I didn't need T3 nor did I have a form of thyroid hormone resistance....proved wrong on both counts!!
It's all in my bio.
Symptoms are vitally important and are supposed to be considered during diagnosis....but if they don't know what to look for they are unable to see the warning signs. After all, t's how patients were diagnosed before blood tests!!
I haven't had a blood test for a few years and my GPs no longer insist on testing instead they leave me to treat myself because they see it works!!
You clearly know what you are doing and in your shoes I'd do the same
Med students are influenced to fear T3 which is nonsense...I once told an astonished medic that T3 was no more dangerous than any other medication (possibly less so) so long as it is used correctly
He looked at me, opened his mouth to speak and didn't have a response
Until the medical profession are properly educated this thyroid scandal will continue to follow established ( but erroneous) beliefs rather than scientific truths.
His endo is still against me treating him but symptom relief is very telling in my opinion!
Symptom relief should be the aim of all medics worthy of their stethoscopes!!
Sorry that's a long rant but it's something I feel very strongly about.....had I followed my endo's advice my body would have continued to very slowly shut down.
Thank you, as always, DippyDame. You were able to nicely put into words what I have been thinking. It was exactly what I would have said to someone else, but for some reason I trip over my thoughts when it comes to my son. Thanks for reassuring me!
This is one of the symptoms I get when my iron and/or ferritin is low. If it gets bad enough it can trigger tachycardia (fast heart rate) and chest pain, and these are known symptoms of low iron and/or ferritin.
Has he had iron/ferritin/B12/folate tested? If yes, what were the results and ranges.
In the UK doctors will test the hemoglobin, hematocrit etc and if the hemoglobin is in range then the doctors says the patient isn't anaemic.
But people can have one or more of iron/ferritin/B12/folate being deficient without being anaemic. It can take a very long time for deficiency to develop into anaemia. Without anaemia doctors in the UK are reluctant to treat iron/ferritin etc deficiencies etc but they really do matter and deficiencies should be treated whether anaemic or not.
Thankfully the heart palps have quieted down now that he has started T3, but I’m attaching pictures of his results. He did see a hematologist/oncologist who fully checked out his red count and did a bone marrow biopsy as well but no anemia was found. I am giving him MegaFood Blood Builder Vitamins at the doctor’s suggestion and will re-check labs in a month. Thankfully he never had tachycardia, but just the feeling of his heart pounding away. He also supplements B12 hence the over range number.
If you want to know more about the types of B12 people can supplement when they need it - personally I always supplement with methylcobalamin 1000mcg per day when I think I need it :
Regarding folate, there are many ranges in use and I have decided for my own level that I want my folate at roughly 20 ng/mL. Note ng/mL is exactly the same as mcg/L.
I supplement with methylfolate rather than folic acid which I avoid completely.
Your son's iron results are not optimal, but none of them are deficient. I would suggest that your son needs to increase his intake of iron-rich foods. These links might be helpful :
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