My daughter has just got her results back and im shocked by them tbh. She has been on 37.mcg Levo for 6 weeks.
TSH - 4.77 (0.67-4.16)
T4 - 21 (10-20)
T3 - 5.5 (5.1 -7.4)
This was her third dosage change. She started on 25 and went up to 50mcg. On 50mcg her results showed it was a little too high;
TSH 0.6
T4 25
T3 7
Her T3 was better on 25mcg than these latest results even so i wasn’t expecting this at all. Her TPO’s have also gone up despite going gluten/dairy free diet.
She takes Levo on its own, 1 hour before breakfast. No vitamins with it etc ....
Does anyone have any thoughts at all please.
Her consultant is away at present.
Many thanks
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Dolphin40
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Thats the way it rolls with thyroid. It takes time for things to settle particularly after a dose change and we have to work out longterm what is best for each of us as an individual.
I have questioned Vit D/B12/Ferritin and Folate with 2 Endos, Paediatrician and a Functional Doctor who all say she is fine. They are clearly too high or too low but my dsughter is 6, im new to this, you kind of have to take the word of 4 professionals. BUT something is just not right 😞
Vitamin D level is very, very low, compared to the range given. I think I would be poorly at that level. Vitamin D levels can have an impact on thyroid. Needed for many hormones. It's a pre-hormone (D3).
Where have her antibodies gone up too? If they are over-range, then she has Autoimmune Thyroiditis - aka Hashi's. And, with Hashi's levels can jump around. So, if the dose is changed every time the levels go over, you are going to get a yoyo effect.
50 mcg levo is only a small dose - it's a starter dose, actually, and she should have been started on that, rather than 25 - and I doubt if it could be responsible for her previously high levels. Now, she's well under-medicated. And, she's a poor converter. Her FT3 is much too low - if that strange range is correct.
Her TPO’s have also gone up despite going gluten/dairy free diet.
Neither a gluten-free diet nor a dairy-free diet are likely to affect levels of antibodies. Antibodies fluctuate, so it's difficult to prove that they have been reduced by anything. But, even if they were reduced to zero, it wouldn't do anything. She'd still have Hashi's, because the antibodies are not the disease. They just indicate that the disease is present. You cannot stop or improve Hashi's by lowering antibodies. So, if GF and DF don't make her feel better, then there's no point.
T3 has been fine up until this last test which is strange. Yes. Range correct. If she wasn’t converting wouldn’t all her T3 results indicate she wasn’t converting?
It looks like she is under medicated with T3 and TSH results but her T4 is above range and increasing dose will only make this higher. Endo wont do this has already has SVT so doesn’t want stress on the heart understandably. So not sure where this leaves us 😞
Hi can I ask how she got diagnosed with SVT as I am struggling with similar issues at the moment and I am taking NDT as I can't tolerate synthetic levo/ liothyronine anymore. I am having a 24 HR tape Tomo.
That's interesting thanks did the ECG show anything? I had a few in A n E but not sure if it showed much and they said it was sinus tachycardia then I have the 24 hour tape tomorrow, did she have the holter monitor because something showed on the 24 hour tape?
Yes something showed slightly but think more to do with the frequency of episodes. She started having 4 a week and it affected school by causing huge anxiety 😞
Also doesn’t some of her symptoms/side effects since starting Levo indicate being over medicated? Hair loss, spots, perspiration- none of which she had prior to meds.
They started her on 25 as her TSH was 12 but T4 good. Two different Endos differed in their opinions on whether to start her on Levo or not. That doesn’t give you much faith when you are first starting out and don’t know all the info 😞
No, they're hypo symptoms. Doesn't matter if she didn't have them prior to 'meds'. A whole host of new symptoms can appear when you start taking levo, until you get on the right treatment and the right dose.
They started her on 25 as her TSH was 12 but T4 good.
Oh dear. They really don't understand how this all works. Doesn't matter how good her FT4 was, once she started taking levo, her thyroid stopped its natural production of hormone, and 25 mcg wasn't enough to make up for it. Hence the new symptoms.
Taking levo does not 'top up' the hormone your thyroid is making, it stops your thyroid making hormone, so you are entirely dependant on the levo.
Two different Endos differed in their opinions on whether to start her on Levo or not.
Well, that often happens. If there's one thing doctors hate, it's diagnosing and treating thyroid problems. And, contrary to popular belief, endos are not specialists in all hormones - as the name suggests - 99.9% of them are diabetes specialist with little knowledge of thyroid. I think a lot of them feel out of their depth, and the rest just don't believe it's really a problem.
And, this is why hypos have to learn all they can about their disease, so they know when their doctors are talking rubbish.
It has never been explained like that to me. It upsets me as i feel did I make the right decision for my daughter by starting the Levo in the first place. Her symptoms are worse since starting it. Her thyroid was perhaps doing ok before then?
Even if it was doing alright before, that would not have lasted long as she has Hashi's. I often think the same thing, but my thyroid packed up completely not long after diagnosis, killed off by Hashi's. And there was nothing anyone could have done to prevent it.
Do you have a copy of her labs when she was diagnosed?
Oh, well! With that high TSH, she definitely needed to start levo. She was very hypo.
So, her levels have jumped about a bit, but that's more to do with the Hashi's, than her dose of levo.
T4 - 21.9 (10-20)
119%
T3 - 5.5 (5.1-7.4) 17.39%
If you look at the percentages through the range, you can see how badly she converts. The numbers should be pretty much equal, with the FT3 slightly lower than the FT4. With your daughter there is over 100 difference. Surely even an endo can see that means poor conversion. You really ought to talk to him about it.
B12 - 1511 (200-900)
Where's the decimal point? Or is her B12 really that high?
Ferritin - 52 (15-250)
That is much too low. She could probably do with having an iron panel done to find out why.
Magnesium- 0.84 (0.7-1)
No point in testing magnesium due to the way the body handles magnesium. Even a perfect result is no guarantee that you aren't deficient - most people are. She might do well to take some magnesium.
Yes, really that high! None of them have questioned it when i have brought it up. They did full iron panel and again said everything was fine?Thanks for your help
Yes, but there's a difference between having a high B12 when you're taking B12 supplements and when you're not. Yes, if you're taking supplements and take too much you will pee it out. But, if you're not taking supplements, the question is: why is it so high? And, I think that could be a problem with the liver.
Yes thats true too when my numbers were high I wasn't supplementing and about 6 months later I was very low..But I also do have NASH ( Nonalcoholic fatty liver disease) my liver numbers change all the time from normal to crazy high and I have had 2 liver biopsy's and they were fine
A portion is defined as 8 grams. Which, despite being a fan of Marmite, is an awful lot to put on one slice! I think the individual portions you sometimes see in cafés and canteens are 8 grams.
That is less than our daily requirement. And we don't know how much would be absorbed. It is enough to make a difference in people who might otherwise have diets a little low in B12.
I am confused as it looks pretty optimal on 50 just the T4 is slightly over? What did she feel like on 50 as I was always only given 50 for about 6 years at the doctors and I still suffered various symptoms it's very hard to feel completely normal and you need to research into supplements and optimal vitamin levels to see an overall affect in the long term. I have always had high antibodies it's very hard to determine what is triggering them maybe a food/ intolerance test might help you can get them reasonable online hair analysis test I had a few and all picked up similar so you could try avoiding anything that shows on the list aswell also nightshades are a big group to cut out you might want to look Into that if you haven't already.
Yes, she was good in some areas but her hair loss continued and we thought maybe she was on too high. Plus Endo said T4 far too high. TSH was on lower side and had some hyper symptoms 😞
Yes, i did get a mineral hair analysis test online but as shes lost so much hair im concerned about cutting in 6/7 places as required 😞
Depends what you mean by a 'stable dose'. It's a low dose. A starter dose, really. But, whether or not it's 'stable' is irrelevant.
T4 - 25.8 (10-20)
168%
T3 - 7 (5.1-7.4) 82.61%
As you can see here, the gap between the two percentages is huge. They should be more or less equal, with the FT3 slightly below the FT4. This large gap denotes poor conversion. This means that her FT4 has to be very over-range to give her a decent level of FT3. Which is not good.
Plus, if you look at the difference between her levels on 50 mcg and her levels on 37.5 mcg, the difference is disproportionate. This suggests that the difference is caused by a Hashi's swing, rather than the dose itself.
I really don't think the word 'stable' has any meaning where a dose of levo is concerned.
OK, so this is a brief breakdown of how Hashi's works:
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can try for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
Thank you very my for this. I knew some of it but its always great to get it explained in a way you can understand. I appreciate your help.
It makes it near impossible to get levels right then. Particularly for a young girl like my daughter 😞
Based on this then - my daughter was best on 50mcg? The reason It was reduced was because her T4 was soo high. Im not sure what the side effects/symptoms of a high T4 are?
She went GF shortly after diagnosis and she did take Selenium at the beginning but stopped when her TSH came down as i was so worried about the hair loss.
It makes it near impossible to get levels right then. Particularly for a young girl like my daughter 😞
In the beginning it can be difficult, yes. But, as the thyroid is slowly destroyed, and producing less hormone, things even out a bit.
Based on this then - my daughter was best on 50mcg?
Doubtful she would be best on it long-term.
Im not sure what the side effects/symptoms of a high T4 are?
There aren't really any symptoms of high T4 because T4 is not the active hormone. It's T3 that causes symptoms.
she did take Selenium at the beginning but stopped when her TSH came down as i was so worried about the hair loss.
I don't think there's any direct connection between selenium,TSH and hair-loss. Whe would be less likely to lose hair when the TSH comes down, not more. And, selenium does not directly lower TSH, nor cause hair-loss. But it does help with conversion.
Range correct. If she wasn’t converting wouldn’t all her T3 results indicate she wasn’t converting?
Not if she's having a Hashi's 'hyper' swing, no. The results would just indicate the extra hormone that's been dumped into her blood by the dying cells.
It looks like she is under medicated with T3 and TSH results but her T4 is above range and increasing dose will only make this higher.
Her FT4 is above range because she's not converting it very well. And, yes increasing her levo will make it higher, of course. But, I wasn't suggesting she increase her levo. What she needs is some T3 added to her levo.
Endo wont do this has already has SVT so doesn’t want stress on the heart understandably.
Levo doesn't stress the heart, it's a storage hormone. It doesn't do very much. And, it's far, far worse for her heart to have low FT3.
What you need to do is convince her endo to give her T3 to a reduced dose of levo.
Hormones don't cause side-effects. T4 and T3 are hormones. What can happen is that the fillers in the tablets disagree with people. But, what you described above sound more like hypo symptoms than any sort of side-effect.
It is difficult getting T3 in the UK, because it is so expensive. It rather depends on how much understanding of thyroid your doctors have. But, they will use every possible excuse not to prescribe it, if they can get away with it. This is why we have to understand our own disease, so that we can put forward a case for what we want, and not be fobbed off. They will try and tell you that T3 is dangerous, that it doesn't help, that it isn't necessary - any lie will do. We have to know what the truth is and when they're speaking it. We have to learn about our disease.
Even where I live, in France, where T3 is cheap as chips, the ignorance about T3 is just as rife.
There are no records of any fatalities from liothyronine (T3) in all the yellow card data the MHRA has. They started collating data on it in 1967. For levothyroxine (T4) there has been 19 fatalities during the same period (53 years), and there is no guarantee that the correct cause of death was recorded anyway. Thyroid hormones are simply not that dangerous.
You can look up yellow card data for any drug in use in the UK from this link :
If she has SVT I doubt you will get it unless you go to a private doctor or research a doctor who is very knowledgeable in T3 you won't get it with a regular endo just from my personal experience but maybe it depends where you live in the country every hospital seems to be running different.
It can cause heart issues as I am experiencing now and (IAm on NDT as it depends what your body does with it and how it's functioning as you can end up pooling and getting awful symptoms), if you have any issue with your heart and also I noticed muscle wastage when I took liothyronine but it depends on your lifestyle and whether genetically you can build muscle I suppose but it does still have side affects and it will stop her thyroid functioning completely in the long term as it's doing its job for it with it going straight to the cells so I wouldn't advise right now if she has only just got diagnosed as she is only on a very small dose of levo and 50 looks to me to be the dose to continue to take for atleast 3 months because it takes time for your body to adjust and symptoms to reduce and then retest. It takes a while for hair to stop dropping out and acne to reduce.
Or I recommend if she is newly diagnosed to see a naturopath as If I known 10 years ago what I no now I would of gone straight to one as you can potentially reverse it if you catch it within the first few years
I just want to add that no wonder your daughter is experiencing hair loss because her results are not stabilized yet. I also think her ferritin is too low and that can make hair fall out as well.
Perhaps Levo doesn't suit her and she might do better on NDT. Have you asked your doctor about it? I have taken both Levothyroxine and Thyroid S in the past and I preferred Thyroid S. Unfortunately nobody can get Thyroid S at the moment. I do believe NDT is available on prescription in the UK. I asked my local MP to ask Matt Hancock about NDT and you can see the reply I got on my profile page if you scroll down.
I actually know someone who is in their 20s and was born without a thyroid and she is doing ok. I did ask her how she coped and she tells me hasn't known any different and she is stable on T4 and T3.
Thyroid S is a NDT from Thailand but it is unobtainable at the moment partly because of the coronavirus. It contains both T4 and T3 and NDT was used before the artificial Levothyroxine was manufactured.
How about sugar? It’s right up their as a main cause of inflammation. The inflammation is caused by your antibodies running riot.
So if your concerned about thyroid antibodies, do some reading up about sugar/inflammation/immune system.
Btw If you do manage to cut it out -don’t then replace it with artificial sweeteners - which are really pure poison and very detrimental to everyone’s health. Good luck
Me and my daughter both do better with stevia or honey instead of sugar. Stevia is a lot sweeter than sugar so you only need half of it. It certainly stopped my daughters IBS flaring up all the time.
With Hashimoto’s we frequently need TSH very low to turn own thyroid output right off to stop these wide swings in thyroid levels
As she’s started on levothyroxine dose needs to be slowly increased upwards.
Typical guidelines on dose for adults is 1.6mcg levothyroxine per kilo of your weight
No idea if that’s same for children?....ask the endocrinologist
What does she weigh in kilo?
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most adults need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
I really feel for you and your daughter having to deal with all of this. It was hard enough trying to deal with it at my advanced age. I’m so glad that you have found this site though as it has been so helpful for me and who I call the real experts. Keep getting armed with facts to educate the doctor. Your daughter is lucky to have you and will have a great start in her own journey. Good luck.
All those things which kept taking me back to GP but noticed improvement, back to her old self after starting Levo. Unfortunately seems to be back to Tummy aches/Not wanting to eat, more withdrawn last few days again 😞
Please be very careful with your daughters treatment and dont make any changes to levo without her Endos supervision 50mcg yes is a starter does for an Adult but shes a small child so adult dosing does not apply here. My daughter also has SVT so I know the trouble it can cause. My daughter had an ablation 2 years ago to correct it. Did they say what type of SVT it was? Is it Avnt / Avrnt or Wpws? If it is Wolf parkinsons white please do not change anything without her Dr knowledge xx
Ah I'm the ones with Hashis and my Daughter has the SVT so cant help you unfortunately with both together unfortunately. Do they have her on beta blockers to control the svt? Seems like her attacks are frequent. Betablockers interfere with Levo just fyi if they put her on any it can mess with the effectiveness
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