Excuse the long post please but you have been so helpful in the past ....
I have just received my daughters latest blood results (below) and once again we are so confused. I have written a few times on here about this but i am still so desperate for help. I feel 7 months after diagnosis and starting Eltroxin we are no better off. She is only 6. Most of my daughters symptoms have improved somewhat since meds (energy, brain fog, anxiety, leg pains etc) but at a cost of loosing half her hair. Only started since Eltroxin and I 100% believe is to do with meds/what it has now done to her levels.
We have a paediatrician, 2 top Endocrinologists and 2 functional doctors involved here in the UK and we can’t get to the bottom of it. All agree Vitamin levels are fine (no supplements suggested) full blood count does not indicate anything, and she is GF and DF now which has also improved some symptoms.
She is positive for both TPO’s and ANA’s.
Her thyroid levels are just all over the place and do not make sense as you can see. They are up and down and we have now been recommended we reduce back to 25mcg as her Endo feels she seems more hyper than hypo if anything. My concern here is her previous symptoms returning. People have discussed hashimoto flares on here before and being careful not to reduce meds as you will need them again. Additionally, reducing her meds will only increase her TSH further surely and then we will be back to where we started in the first place (she had a high TSH of 12 but normal T4).
We feel so sad for my daughter and just don’t get what is going on. It is not a straightforward hypo/hashimoto health condition it seems and would appreciate any advice.
Many thanks
Results
Nov 2019
TSH - 12.29 (0.27-4.2)
T4 - 16.6 (12-22)
Feb 2020
TSH - 11.99 (0.27-4.2)
T4 - 17.2 (12-22)
TPOS - 183
May 2020
TSH - 31.89 (0.67-4.16)
T4 - 19.4 (10-20)
T3 - 6 (5.1-7.4)
(25 mcg Levo)
July 2020
TSH - 0.7 (0.67-4.16)
T4 - 25.8 (10-20)
T3 - 7 (5.1-7.4)
(50 mcg Levo)
Aug 2020
TSH - 4.77 (0.67-4.16)
T4 - 21.9 (10-20)
T3 - 5.5 (5.1-7.4)
TPO’s - 263
(37.5 mcg Levo)
Sep 2020
TSH- 8 +
T4 - 26+
T3 - 8 +
(37.5 mcg Levo) - have not got ranges yet but similar to above.
B12 - 1511 (200-900)
Serum Folate - 24 (2-17)
Zinc - 13.4 (9.8-19)
Ferritin - 48 (15-250)
Total Vit D - 81 (75-200)
Selenium - 1.22 (0.6-1.29)
Magnesium- 0.84 (0.7-1)
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Dolphin40
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There is a possibility that your daughter may be resistant to thyroid hormone. I append below a paper discussing this:
Proc (Bayl Univ Med Cent). 2016 Apr; 29(2): 209–211.
doi: 10.1080/08998280.2016.11929421
PMCID: PMC4790576
PMID: 27034574
Thyroid hormone resistance and its management
Ana Marcella Rivas, MDcorresponding author and Joaquin Lado-Abeal, MD, PhD
Abstract
The syndrome of impaired sensitivity to thyroid hormone, also known as syndrome of thyroid hormone resistance, is an inherited condition that occurs in 1 of 40,000 live births characterized by a reduced responsiveness of target tissues to thyroid hormone due to mutations on the thyroid hormone receptor. Patients can present with symptoms of hyperthyroidism or hypothyroidism. They usually have elevated thyroid hormones and a normal or elevated thyroid-stimulating hormone level. Due to their nonspecific symptomatic presentation, these patients can be misdiagnosed if the primary care physician is not familiar with the condition.
It would mean that she could not be diagnosed well by standard thyroid function tests and there would have to be a careful trial and error dosing schedule to see empirically what is best. Not an easy problem to solve.
This is a possibility. Her endocrinologist should discuss this with Prof Chatterjee's team at Adenbrookes Hospital. They handle resistance to thyroid hormone in the UK.
TSH blood tests can sometimes give false high results due to antibody interference but since she her July 2020 result gave a low TSH this is unlikely. diogenes is the expert on this. She is also displaying hypo like symptoms which suggests she is hypo.
There can be a number of causes of hypothyroidism with normal blood hormone levels but her elevated TSH is consistent with genetic RTH. The obvious way forward is for an endocrinologist to discuss her case with the Addenbrooke's team and perhaps run a genetic blood test. (It has to be an endocrinilogist, they only accept referrals from endocrinologists, not GPs).
If she has genetic RTH there are various treatment options which vary according to individual patients. An understanding of her condition can determine whether TSH should be ignored or not. It seems a sensible time to exclude RTH as a potential cause.
The Endo is sending results to Addenbrookes to check the assay she said? She then said she will work logically and go from there depending on results of that. Im just concerned that this is completely going in the wrong direction if Greygoose is correct and its ‘normal’ hashimoto results for example.
Perhaps its as simple as shes on too much Levo hence her T4 is far too high but she is not converting properly and/or needs T3 to bring TSH down? Or is this too simple?
Include / exclude, find out whether she has RTH. The genetic test is definitive although about 20% of patients with RTH do not have a genetic mutation. The Addenbrooke's team have world class expertise in RTH so they can give good advice.
Her TSH is inconsistent with her blood fT3 and fT4 levels. TSH responds rapidly to changes in fT3 and fT4, if it didn't the pituitary couldn't regulate hormone levels.
Endocrinologists used to think TSH responded slowly, this was because they saw a slow change in TSH when they put patients on levothyroxine. This is because we store a little over 10 days worth of levothyroxine in our blood (due to its long half-life) and so each daily dose makes a small contribution. The only time TSH is slow to respond is when it has been suppressed for a long time, it takes a while to pick up.
There is a disjoint between her TSH and fT3 / fT4 which confirms it is not a simple case of erratic secretion from the thyroid.
Another possibility is TSH receptor blocking antibodies. These block TSH receptors in peripheral tissues and in the pituitary. So they would cause hypothyroidism by reducing the action of thyroid hormones and elevate TSH because thyroid hormone action in the pituitary would be reduced also. There isn't an assay available for measuring blocking antibodies but they can measure TSH receptor antibodies (TRAb) which includes stimulating and blocking antibodies. If this is high it would indicate this is the probable cause of her hypothyroidism.
I got her TSH receptor antibodies tested shortly after diagnosis and it came back negative. So at least that is ruled out. I just hope we can get to tge bottom of it quickly and help her. What would you suggest about reducing Levo to 25mcg as advised?
I'm not sure to be honest, I can see reasons to keep it as it is and to reduce it. I would go with the endocrinologist advice for now. She seems reasonable, is checking with Addenbrooke's and taking a methodical approach. If a doctor is being helpful and has not exhausted all avenues I think we should go with them and give them a chance. Let them follow their thought process. If it all fails then we can push for other options.
Most of my daughters symptoms have improved somewhat since meds (energy, brain fog, anxiety, leg pains etc) but at a cost of loosing half her hair. Only started since Eltroxin and I 100% believe is to do with meds/what it has now done to her levels.
It is not unusual to lose hair when starting levo. But, it should be only temporary. She's only been on it for 7 months. So, the hair that has died has to be shed before the new hair can grow. So, give it time. But, her low ferritin could have a lot to do with it.
All agree Vitamin levels are fine (no supplements suggested)
Unfortunately, although they pretend otherwise, doctors know nothing about nutrients. For them, as long as it's in-range, it has to be perfect. They know nothing about low levels, and high levels within the range. And they don't understand that the ranges are too wide. They need a hefty push to do anything. So, I would take them to task on that ferritin levels, if I were you. It's too low. And, I don't think a complete iron panel would be excessive.
She is positive for both TPO’s and ANA’s.
TPO antibodies are the Hashi's antibodies. You know she has Hashi's. The ANA test just confirms that she has some sort of autoimmune disease without specifying what it is.
Her thyroid levels are just all over the place and do not make sense as you can see. They are up and down and we have now been recommended we reduce back to 25mcg as her Endo feels she seems more hyper than hypo if anything.
This is perfectly 'normal' and to be expected with Hashi's. And, there's not much you can do about it. Unfortunately, doctors don't understand Hashi's. They have no idea about the 'hyper' swings, and automatically blame the dose. They just didn't learn about it in med school. You'll probably have to educate them on that point!
TSH- 8 +
T4 - 26+
T3 - 8 +
Difficult without ranges, but we can gather that all three results are high. She probably has just had a 'hyper' swing, but the TSH hasn't quite caught up with the Free levels. The TSH follows the Free levels, it doesn't lead them. And, as it doesn't move as fast as the Free levels, it can lag behind quite a bit.
But, she is not hyper per se. Do you know how Hashi's works? Do you know about the attacks by the immune system on the thyroid? I don't want to appear to insult anybody's intelligence, but it's difficult to know how much anyone knows unless they tell you. The thing is, that when the thyroid cells die, during the attack, they release their store of hormone into the blood, causing the Free levels to shoot up, and eventually, the TSH drops. But, this does not mean that the thyroid is over-producing hormone, which is the definition of hyper. I'm not sure all doctors know that...
People have discussed hashimoto flares on here before and being careful not to reduce meds as you will need them again.
Yes, what they actually mean is: don't reduce the prescription, because you'll need the full dose again once the excess hormone has been used up or excreted. Normally, we just advise stopping the hormone for a few days, without involving the doctor, until you feel hypo again. But, I realise that is more delicate with a young child.
Additionally, reducing her meds will only increase her TSH further surely and then we will be back to where we started in the first place (she had a high TSH of 12 but normal T4).
Well, it all depends, doesn't it. Depends on how much the dose is reduced, and her levels when the 'hyper' swing goes back to hypo. So many variables. Which is why we don't want doctors reducing or prescription. We need to be able to play around with the dose a little to find the right place.
But, as you say, her TSH was high when she was diagnosed. But, her FT4 wasn't 'normal'. It was in-range, yes - and that's all a doctor means when he says 'normal' - but it was a bit low. And, if her FT4 was low, the odds are that her FT3 was even lower. Pity they didn't test it.
It is not a straightforward hypo/hashimoto health condition it seems and would appreciate any advice.
Whoever told you that Hashi's was straightforward??? It most certainly isn't. In fact, what your daughter is going through now appears to be a classic case of Hashi's complications. But, it will calm down. Sorry to say this, because it sounds bad, but the more of the thyroid that is destroyed, the less violent will be the 'hyper'/hypo swings, and the easier it will be to control her dose. So, don't lose heart. Things will get better.
So do these results suggest to you nothing else may be going on and that shes having regular flares? Nothing more sinister so to speak 😞
They want to reduce it to 25mcg. But her TSH is still too high on 37.5mcg as you see from her previous results so im scared to do so. I feel uncomfortable going against a specialist though, it would be different if it were me but its my young child. Not sure what to do 😞 She is definitely not on the right dose but I don’t know if its too high (T3 suggests otherwise previously) or too low (high TSH) I know her hair loss happens more when i keep changing doses so its even more difficult to decide 😞
Well, I'm only an expert in that I have the same disease - and I do believe that the patient is the expert in her own disease - but to me, no, it doesn't suggest anything sinister.
As for the TSH, don't get too hung up on it. It is actually a very bad indicator of thyroid status. But, the most important thing to know is that, whatever its level, it is not contributing to her disease. TSH does not cause symptoms, and does not, of itself, make you ill.
Thyroid Stimulating Hormone, TSH is just a messenger between the pituitary and the thyroid. When the pituitary senses that there is not enough thyroid hormone in the blood, it increases its output of TSH. When the level of thyroid hormone in the blood rises, the pituitary secretes less TSH. But, because her thyroid is dammaged, that link between the two is also dammaged and doesn't work as well as it did. But, in any case, the TSH level always lags behind the levels of the Frees. The Frees can change quite rapidly with Hashi's, but the TSH cannot keep up. So, don't worry about the TSH being high, it is not making her sick. So, no need to be frightened to reduce her dose if her FT3 is too high.
The most important number is the FT3 - thank goodness they're testing it for her! T3 is the active hormone - it's that that causes symptoms when it's too high or too low. If the FT3 stays at a reasonable level, then there's no need to worry about the TSH.
As for the ANA, as I said, it just indicates the presence of an autoimmune disease. You know she has Hashi's, and that's an autoimmune disease, hence the high ANA.
What you say makes complete sense but when I keep discussing T3 with the Endo/functional Doctor it just gets ignored. I requested a RT3 to see if i can back up the possible lack of concerting but they say it has no relevance/not needed at this time?
Also the reason im worried to reduce is because last month her T3 was 5.5, very bottom of the range hence if she is having a flare and I reduce to 25mcg then her T3 will also reduce which will make her even more symptomatic ? Though i do agree her T4 has been a high for a while now. Any thoughts on what i should do pls?
when I keep discussing T3 with the Endo/functional Doctor it just gets ignored
I'm afraid they just don't know anything about T3 - I've met doctors who had no idea what it was! It's another thing they just don't learn about in med school, I'm afraid. So, no wonder they avoid talking about it. They're completely out of their depth.
I requested a RT3 to see if i can back up the possible lack of concerting but they say it has no relevance/not needed at this time?
Well, there I agree with them. An rT3 test gives you no useful information. Despite what some people say, it doesn't tell you how well you convert. You find out how well you convert by testing the FT4 and FT3 at the same time, working out the percentages through the range, and comparing them. The FT3 percentage should be just slightly lower than the FT4 percentage. Looking through your results, it seems to jump about, because the other results jump about, so at this point we can't really say how well she converts, anyway. You'll have to wait until the Hashi's calms down.
There are many, many resons for high rT3, and only one of them has anything to do with the thyroid. That is when the FT4 gets too high, and starts converting to more rT3 than T3. This is a natural reaction to keep FT3 levels from going too high. Looking at her latest FT4 level, it's pretty certain that she will have high rT3. But, that's really not something to worry about. The test is expensive, the NHS won't do, so it's really not worth the effort.
Also the reason im worried to reduce is because last month her T3 was 5.5, very bottom of the range hence if she is having a flare and I reduce to 25mcg then her T3 will also reduce which will make her even more symptomatic ?
Aug 2020
TSH - 4.77 (0.67-4.16)
T4 - 21.9 (10-20)
T3 - 5.5 (5.1-7.4)
Yes. To be honest, I didn't really take that in. It's a very strange range. Where are her labs done? Her FT3 is low there.
But, it's higher in the latest one. It's over-range. So, maybe just stop the hormone for a few days, until the levels come down a bit, and if her symptoms get worse, start giving her her normal dose again. I don't know how comfortable you feel doing that, as you say, you'd do it for yourself, but it's different when it's your child.
But, in any case, if you reduce her levo, by the next blood test her frees will have gone down, her TSH will be high, and they'll be forced to raise her dose again. That's how it works for many people whose doctors don't understand Hashi's. But, you could try explaining it to them.
And, on the subject of conversion, Hashi's people often are poor converters, which is another thing doctors don't understand. Maybe if you tried explaining, one of them would have enough interest to do a bit of research? All the information is out there, if only they could be bothered to look!
it is only 14% of the way through the range, but on this forum many people feel at their best with ferritin mid-range i.e. around 50% of the way through the range or slightly over. Mid-range is 132.
For more info on iron and related measures and what is optimal :
I agree but when i discuss this low ferritin with doctors/Endos etc they say she is fine. I don't feel confident enough choosing and giving her supplements that have not been recommended. I would not know what to give her to help increase her ferritin?
Ferritin is a measure of iron stores. So to raise ferritin it is necessary to take iron supplements and/or increase iron levels in the diet. There are some caveats to that though. I explain my difficulties with telling people about iron here :
Medichecks does a good iron deficiency test but won't sell any tests to be used with children i.e. those under 18. Unfortunately, I don't know of another good test. The BH one is missing some necessary info and if I remember correctly it is expensive. But BH do at least allow children to be tested. And they have a 30% off discount code given here :
Assuming that she hasn't been supplementing B12 and folate in any form there are some causes of high B12 that aren't particularly good news and might need looking into :
Not supplementing but again this is being ignored by everyone. I don’t know where to go to get it looked at. Both Paediatrician and Endos ignoring this 😞
I came across this sentence in an article today, and I thought of you and your daughter:
Folate and B12 levels may become unnaturally elevated in the blood, which can confuse the body as to which vitamins are active and inactive, and will cause processes that rely on these molecules to falter.
I found it in an article about the MTHFR gene mutations which are extremely common :
I have actually has methylation tests done for her but her FD has not been available to analyse them so it looks like she has the MTHFR gene (im struggling to interpret anything) I don’t know what it means/how to help her. I spoke to another FD about it in the interim but he said not to get caught up in it so again, we feel helpless 😞
Unfortunately this will continue until her levels are right. As it is now Autumn you could buy her several fashionable hats to hide the loss. I used to own several when my hair loss was very bad and it helped me to feel more confident when I was out and about.
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The thing is, that when the thyroid cells die, during the attack, they release their store of hormone into the blood, causing the Free levels to shoot up, and eventually, the TSH drops. But, this does not mean that the thyroid is over-producing hormone, which is the definition of hyper. I'm not sure all doctors know that... 
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