Hello all, My 18-year-old daughter is doing terribly, feeling too unwell to go to school. After a week of over-doing it with activities, now her heart rate rises just when she walks across a room. We took her into the cardiologist a month or so ago, when her heart rate starting rising from activity in a new way, and he gave her a clean bill of health, and thinks the thyroid is the problem.
Her PCP thinks that she’s showing signs of dysautonomia triggered by her thyroid (and I agree! There’s a whole list of symptoms)
But here’s the complicated part: the doctor is very worried about her having both a low TSH and also a low T4.
In December, her Free t3 measured 3.3 (2.3 - 5) . . so like 37%
In Sept, her TSH was 0.005 (.45 - 4.5). . . so, the basement
Her Free T4 was 1.23 (0.93-1.6) . .so 29%
(Also tested recently, all in normal ranges, were insulin, a full iron panel (because I have ferritin issues), b12 and folate. I have her take d3 and b12 sublingually.)
My guess has been that the suppressed TSH is not an issue, because she’s been on Armour Thyroid since she was in third grade (9 years ago) and so her TSH is just suppressed. After a year of being so unwell that she was unable to get off the couch, when she started Armour Thyroid, she was up and drawing after a day, and after three days, people were asking what we’d done, that she was so much better—it was a really dramatic improvement. Later, pediatric endocrinologists had her try various other ways of getting thyroid, like Tirosint + Cytomel, etc. but she always came back to Armour and felt better on it (if not great, at least better than other options).
She also has fibromyalgia/pain amplification syndrome, and migraines, so another complicating factor is that she’s been adding a new migraine med (Nurtec) and a new medicine for pain, Cymbalta/Duloxetine, which was just increase. So! As you can see, it’s hard to enough know what to tell you! But this last week, she’s been exhausted to a whole new level, and the doctor is trying to get her into any endocrinologist. Does anyone have any advice? Thanks in advance!
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I too am the mom in an 18 year old in the US! Similar symptoms, I could have written part of that myself, I just read it out loud to my husband and his eyes went wide. My daughter is not diagnosed (yet?!) so lots of differences.
But first.
Can you share exact blood tests including ranges (and dates/time take) and what medication she was on.
Blood tests should include:
* Thyroid:
* TSH
* Free T3
* Free T4
Whatever thyroid antibodies she’s ever had tested:
So sorry to hear your daughter is going through this, too. It's very hard to get attention that does more than just get most basic TSH within range! We've had a great pediatrician, which helps.
I'm trying to get access back for her labs--we lost all of those in the portal when she turned 18 and parental access stopped working, so we're trying to reset them all for her. I'll post them as soon as she can get in!
She's definitely Hashimoto's. She was diagnosed originally at age 7. Her D3 and B12 used to be low, but are now in range. We're in California.
She is wildly under-replaced with her Armour. Her Free Ts are low enough to make anyone feel bad.
Are you familiar with how irrelevant being “normal “ or “in range” is to how we feel/our symptoms? It’s a freak of our medical establishment that doctors think that just being in range - even if low in range - is all we need. Nothing could be further from the truth.
Many of us (although we are all different) feel most well when both ft4 and ft3 closer to top of range (75% through give or take) for reference, and so when I look at the numbers above that pops out.
How much Armour is she on, and how long has she been on that dose?
Do you remember your daughter's ferritin result off the top of your head?
My daughter aged out of pediatrics 6 months ago as well. Is your pediatrician going to keep seeing her after 18 or is she being referred?
Do you know the lab where the blood was processed? Quest maybe? I’ve always called the lab directly and asked them to provide me copies. My daughter’s pediatric portal was so hard to use.
Yes, we're still trying to get the rest of the labs back. The ferritin was 37 (15-77). . .so I would think that is not low enough to be part of it. . or is ferritin one of the things that matters if it's in range, but low? (I have high ferritin that I keep down with blood draws, so that's a piece I'm less familiar with).
She is currently on 2 grains of Armour, and she's 120 lbs.
37 is absolutely low. Dire, really. Definitely causing symptoms (of course detangling which when symptoms for thyroid iron and all the other things that come along with it are a huge chicken and egg game.)
Even the WHO defines ferritin under 30 as a problem.
That being said - don’t expect your doctors to understand this AT ALL. They are not taught properly or fully in medical school to identify anemia outside of red blood cell count and related. Unfortunately that is entirely insufficient to diagnose and treat.
The graphic helps understand. Keep in mind - low ferritin does not need anemia/deficiency in any other iron measure to be a problem.
Again - educate yourself before trying to battle the system.
Iron is toxic in excess, it’s not joke and nothing to take lightly. That being said. Many of us here are actively managing our iron issues (I am for me and my daughter as well.) Never supplement iron without regular iron panels and careful dosing. Especially with our kids! We def need to tell them exactly what to take.
We need to see your daughters tests results and then we can share our experiences with you!
Thank you, I posted the September iron results below, in the reply to humanbean, and I will post today's blood results as soon as we get them--they sometimes come back the very next day!
She's on 2 grains. The hard part of getting the increase is that the pediatric endocrinologists did not approve of Armour, so I convinced her pediatrician to write for it, and we haven't found another endocrinologist that really understands Armour and how it suppresses TSH.
When taking Armour or any brand of NDT the TSH will be low suppressed and the T4 can be much lower in the range than when taking synthetic thyroid hormone replacement.
There are no ranges for NDT and the ranges used were introduced to be used against synthetic treatment options.
Your daughter likely needs a dose increase on her NDT :
No thyroid hormone replacement works well until the core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels :
Thank you, I didn't know that the lower T4 was also less significant, but of course that makes sense because Armour works for poor converters. I've been on Armour for ages, but without the extra issues my daughter has. Here's the thing, though, I think the doctors will need peer-reviewed medical publications to back this up--if anyone has any, I'm going to be looking today!
Ideally we need a blood test around 10-12 hours after her last dose of NDT just to check where her T3 - compared to the range :
Everywhere I researched suggested no thyroid hormone replacement works well until ferritin is up and maintained at least over 70 -
So likely this is why she feels as she does as the Armour is not being utilised well in the body.
I take NDT and on UK ranges now know I need to maintain my ferritin up at around 100 - folate around 20 - active B12 around 125 ( serum B12 500++ ) and vitamin D at around 125.
Those levels are very helpful! I do know from experience that a low D and/or low b12 is just devastating. Did not know that about the ferritin, as I have the opposite problem.
I think the pediatrician would be convinced by peer-reviewed articles saying that a suppressed TSH should not be used as a guideline in T3/T4 therapy.
Ok - so I doubt there are any peer reviewed papers as Natural Desiccated Thyroid D is an ' old ' drug that is not taught, encouraged or used in mainstream medical in the UK.
Doctors who prescribe and use synthetic T3 or NDT - know, through experience, that both these treatment options will suppress the TSH -
Unfortunately if the medical team do not understand how NDT or T3 present in blood tests you are up against a brick wall - though they should know that T3 is the most important reading to track on.
If they have had no experience of NDT or T3 - they are ' lost ' and not in a position to effectively treat your daughter.
The guidelines in the UK do not cover NDT which is now Black Listed and not available on the NHS to new patients -
and the guidelines in the UK for treating hypothyroidism are not even fit for purpose.
I'm afraid most doctors are obsessed by the TSH even when it has no relevance and simply follow the dogma spewed out of a computer that is not even programmed with the patients health issues.
I think you need considered opinion and you'll likely find that by going private and to a recommended specialist who knows how to treat hypothyroidism and who has the knowledge and experience to know what's best for his patient and to think outside the box and treat the patient - not a blood test.
I buy my own NDT run my own blood tests and have given up going to a doctor for my thyroid - or lack of - as I had RAI thyroid ablation in 2005 for Graves Disease and was treated by a TSH to be in range and became very unwell some years later - details on my Profile page if interested.
Well I can only write from my experience and from a UK perspective where you need to go private or Do It Yourself if the treatment you receive keeps you ill and your doctor and hospital refuse to consider treating you with any other thyroid hormone treatment option -
The O/P is in a horrible position with her daughter and trying to do the right thing for someone you love is a whole other level of stress on both parties - and possibly a specialist - outside mainstream medical - who treats the whole person and with independent thoughts might be worth considering.
Dysautonomia. It's important to rule (or correct) the thyroid issues first as there can be lots of overlapping symptoms. But once you have done that and if you still suspect dysautonomia, you'd be best to find a consultant who specializes in dysautonomia as your daughter sounds complex with other issues as well.
I have heard it is easier to find someone specializing in dysautonomia in the US vs the UK. Her dysautonomia sounds similar to mine, increased heart rate on moving being one of my biggest symptoms.
I'm sorry you are dealing with this too! Did your dysautomia improve when your thyroid levels are optimal? We do have a specialist recommended to us for the dysautonomia, luckily, as we're near Los Angeles. But I think we'll also need to track down a endocrinologist who understands.
I like my symptoms to different sets of stencils layered on top of each other. Some symptoms are similar but I can tell them apart, some seem the same and I don't know which thing is causing them, and some symptoms are obvious to link.
That said, I felt a sort of edge on my fatigue improve and some muscle soreness improve, but I associate that pattern of fatigue with my thyroid issues and have other patterns pf fatigue too.
Soooo, my dysautonomia hasn't improved in any way I can link to my thyroid. But that's not to say it might not be linked that way for someone else.
Who is prescribing the Armour? She needs to have regular reviews and increases until FT3 is in the top end of the range. That’s what my prescriber does.
It's been the pediatrician after several rounds with a pediatric endocrinologist who didn't approve of Armour. I don't even fully understand why the synthetic T4 with T3 separately didn't work as well, since they are precise, but my daughter definitely felt better on the Armour.
But the pediatrician is not comfortable with the fully suppressed TSH, so now we will need to find someone who has dealt with Armour more.
In December, her Free t3 measured 3.3 (2.3 - 5) . . so like 37%
With FT3 this low it's little wonder she is strugggling
T3 is key
For good health every cell in the body must be constantly flooded with T3 by way of a dose adequate for her body's needs. This dose can vary widely depending on how her system functions.....for example I have a form of Thyroid Hormone Resistance and need 100mcg T3-only daily, a dose which could be dangerous for someone else. It isa very personal thing
but she always came back to Armour and felt better on it (if not great, at least better than other options).
Big clue!!
How much Armour was she taking?
Armour.....I grain/60mg contains 38mcg T4 and 9 mcg T3.
The T3 in her dose clearly helped....but she needs more!
She will need to exercise trial and error here....
Increasing Armour dose or trialling a T4/T3 combo
First we need to know what dose of Armour made her feel best!
The T3 (in the Armour) naturally lowers both TSH and FT4
In any case TSH is not a reliable marker ....that is FT3 followed by FT4
Unfortunately, medics don't understand/ recognise the science behind this, and instead rely on what are only established opinions e.g TSH is the gold standard test. It is not, and this is causing misery for many patients, many arrive here!
Does she have any results including both FT4 and FT3, before she included any T3 in her dose? Or her original diagnostic test results
We are legally entitled to request copies of labs from our surgery
These labs can be used to establish her T4 to T3 conversion status.....high FT4 with low FT3 indicates poor conversion.
Poor conversion results in low T3/FT3 and this is what must be resolved
It means adding enough T3 to raise her FT3 to roughly 75% through the ref range....in December this was only 37%
Bear in mind the heart needs a lot of T3....the cardiologist is correct. It is low T3! He has eliminated other possible causes
She could initially try increasing her Armour dose.
Having said that she needs to have her dose adjusted to correct her low FT3 and I'd suggest the best way is a T4/T3 combo, because the T4/T3 ratio in Armour may not be what her system needs. With T4/T3 the dose can be tailored to her needs.
We need more details of her past and current dosing regime and how she responded to each, to work out an appropriate. Her endo SHOULD be able to do this!
Starting with her most effective Armour dose!
She must also optimise vit D, vit B12, folate and ferritin to support thyroid function
Have thyroid antibodiesTPO and Tg been tested for thyroid autoimmne disease?
Sorry this is a bit of a ramble but hopefully something resonates
Thank you so much for the detailed response. We do have the labwork, but something is wrong in the lab system with her login that we're trying to get fixed.
Our weather has been colder than usual, and she's very reactive to everything, so it would make sense that she needs more Armour.
Yes, it's definitely Hashimoto's. vit D, vit B12, folate and ferritin all tested in range.
I think the hardest part is going to be finding an endocrinologist who is comfortable with Armour and a suppressed TSH!
Oh, I did find screenshots in my phone notes of previous labs that were off. In 2023, her Thyroglobulin Antibody was 4.6 (0-0.9) while her TPO was in range at 9(0-26).
In 2022 it was 1.0 (0-0.9) while her TPO was in range at 13 (0-26).
Hi, I'm sorry your daughter is going through this. Has she been checked for EDS? EHLERS-DANLOS syndrome? This could be the root of the problem, besides the thyroid. It is how I came to terms with all my strange symptoms. There are great resources about EDS, usually a Geneticist would have to do the testing, but you can start with the Brighton Score test, which can be found online or on the resources of the ehlers-danlos.com/what-is-eds/ website. If she does meet the criteria, you can check out thezebra.club/ for coping strategies. I have tried many messages, all give me severe side effects. She could be reacting to the cymbalta most likely, and maybe too many drugs at the same time. I opt for more natural options, and even though I live with pain, it is better than the side effects. Maybe just with the Armour and other natural or milder option for pain meds could be a better option for her, specifically being so young. And maybe she needs a smaller dose? The thyroid meds are life sustaining hormones, in the other hand the other meds are just masking symptoms. I am not an expert, but I base my opinion on my lived experience with multiple symptoms and failed meds.
Thank you for your input! I feel like we asked about EDS in the past and the specialists thought it was not that. . but I'm trying to remember why they didn't think it was? Maybe the lack of certain hypermobility? The neurologist who prescribed the Cymbalta called us back last night after I posted this, and agreed that she should drop down to the lowest dose, at which she had no side effects we could see.
Her pediatrician agrees that fixing the thyroid is job #1, and then looking at the rest of these issues to see how bad they are once her thyroid levels are working for her. I'm just overwhelmed on how to find the right thyroid specialist as the pediatrician feels this is beyond her.
To get a proper EDS diagnosis you need to go though a Geneticist. EDS is not a well known condition across the board, many physicians are not educated on it, so it is better to go to the Geneticist. Most people w EDS dont get a proper diagnosis till late in life after they have been through many specialist. I hope you can find the proper care and Endo. Best of luck, and hang in there! Youre doing a great job advocating for your daughter.
Have your daughter's iron and ferritin (iron stores) tested. Better still would be a whole bunch of iron-related tests - what's usually called an "iron panel" in the UK.:
Ferritin
Serum Iron
Transferrin or Total Iron Binding Capacity
Transferrin Saturation Percentage
CRP
Make sure to get a copy of the results, including the reference ranges, then come back here and copy the results to a new thread and ask for feedback.
When I was extremely low in iron my heart rate went up to 150 - 170 beats per minute with the slightest "exercise" like walking a few yards. If your daughter's heart rate goes above 100 beats per minute that is called tachycardia, for which there are many causes, not just low iron:
Edit : If you haven't got one, buy a "pulse oximeter" - they are available on Amazon and probably sports websites selling gadgets. They are not usually expensive, and they just need to be put on a finger to measure pulse and oxygen level in the blood. It would be worth keeping records if your daughter's pulse is high and her oxygen is low.
If she does have a high pulse and low oxygen, what does that mean? We do have a pulse ox.
I found her full iron panel from September 2024--attaching it here. Do you see any that are low enough to matter? She was already not feeling herself when these were taken (and a full iron panel was drawn just this morning--we should get those results as soon as tomorrow.)
Forum is glitchy today, I typed a reply and hit “reply” but it didn’t submit. Unusual but here’s a less well written rewrite! : (
So her cbc does not scream iron anemia (yet), which unfortunately is the only way doctors have been taught to evaluate iron. The good news is that it’s super easy to get supplements otc or online here.
Keep in mind that those cbc measures can take 90+ days to be impacted by low circulating iron and ferritin, so it’s possible that her cbc will deteriorate if her iron/ferritin is ignored.
Serum Iron: 56 - only about 20% range when we aim for 55-70% (and no higher). Functional, circulating iron is bad.
TIBC: 286 is on the lower end; which says her Total Capacity to Bind Iron (ie carry it around her body where it’s needed) is reduced.
For this one, TIBC should be rising as her body should be preparing itself for the iron it knows it needs…, but it’s lagging. This points to the overlapping influence of her sluggish hypo metabolism. Iron is impacted by hypo, not just vice versa, so fixing either boosts the other.
Transferrin Saturation: 20% This one is super important, as 25-30% minimum (no higher than 40-45%) is needed for T3 to work well.
And ferritin of course.
Iron is complex and needs a personalized and well monitored approach.
I have a friend, much older than your daughter, who seems to have a very similar condition. I hope you can get your daughter balanced because this is a difficult condition to live with. One of my friend's major problems is finding medical advice from someone who really understands the situation, and hopefully, this will not be your case, as you live in a part of the country where there is a lot of expertise. My suggestion to you is to Google as many searches as you can that will give you the names of research doctors and institutions that actually study the thyroid and to contact one or more of them. Your daughter needs to be carefully monitored until she is on the right medication to feel normal, and to be kept monitored.
I saw the name of this Doctor, in one of my searches, that may be able to direct you: Tracy Tylee, MD, University of Washington, Box 356426, Seattle WA 98105.
Thank you, I'm trying so hard to Google for someone who uses desiccated thyroid in some form! We're in the Los Angeles area. It's so hard to find someone who doesn't go by TSH.
It’s hard the world over. I have given up trying to find a doctor who knew any of this, and my goal is to find one whose ego isn’t too big to listen.
Oddly enough, the urgent cares and smaller practices have always been excited to talk to me … the older and more credentialed the doctor the bigger problems there are!!!
You need to educate yourself, know what you want, what your daughter needs, then you will have to look at the healthcare system as something to navigate around, not something that is set up to help you .
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