My 18 year old daughter has had very distressing thyroid levels in the last year and a half and has been shoved from doctor to doctor and can't figure out what is going on. Brief history:
She was treated for Wilson's low temperature syndrome from Octo 2018 through Sept 2019 - symptoms were very low temperature, bad constipation, depression, and struggling to function, severe brain fog.
Blood tests indicated TSH of 0.1; T4 normal and t3 just below normal range (sorry I don't have the exact numbers).
She was cycling on T3 from 7.5 mg to 90 or 105 mg and back down every 5 to 6 weeks. Her symptoms improved and she was doing much better. Looked the picture of health when I left her at university in August 2019. Six weeks later, after a very stressful time with a roommate, she crashed. She was still following all of her Wilson protocols. Severe brain fog, high blood pressure and high cholesterol, rapid weight gain and complete lethargy. Went to have bloods done and her TSH was 7. They did not test t3 or t4 but put her immediately on Levo of 50mg. After 3 weeks they tested again, also only TSH and it was 4 so they increased to 75mg. She continued taking the Levo and 3 weeks later TSH was back up to 5.5. At this point she was not functioning and went to the Mayo Clinic to be looked at. It took several weeks to get an appointment and by the time she did, her TSH was 7.5. They raised her dose to 100mg in the middle of December. She came back to South Africa for a visit and I took her to a functional medicine doctor who put her on THyroid S. FOr a few weeks she was taking Levo 100mg and 1 grain thyroid S. When Levo finished she increased to 1.5 grains of Thyroid S.
At the end of January 2020 Her TSH was 0.5; T3 and T4 low end of normal (don't have numbers). She increased her grains over the last 2 months and is now on 2.5 grains.
Her bloods from a few days ago TSH 1.89mIU/L (0.3-4.0)
Free T4 0.8 (0.8-1.7ng/dL)
Free T3 1.9 (2.0-4.8pg/mL)
I know these are not good. T4 and T3 are way too low and TSH should be much lower. We are struggling to find a doctor that listens. She is really struggling. She is a former elite athlete and now is so sore she can't exercise. Full body aches and swollen. She is taking all of her vitamins and iron supplements, gluten free, dairy free, sugar free and no red meat. She takes care of herself. Takes thyroid S away from iron and coffee and at the same time, etc. It's hearthbreaking. Any suggestions? Should she continue with THyroid S and go up to 3 or 4 grains or do we look toward a levo/cytomel combination. This is so frustrating.
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My heart goes out to you as a mother and your daughter so young to have all this. I could have written this post. I have increased my ThyroidS to 5 tablets and 2 x 25mcg of Tiromel ! and I dont understand this either x
Thanks MIchelle! I haven't heard what the "optimal" amounts of Thyroid S are. I know everyone is different but was hesitant to tell her to just keep taking more thyroid S.
I think she also needs T3, but to get a doctor to look at this and stop telling her to relax, all college freshman gain weight is impossible. SHe knows herself well as a former elite athlete. She can't move she's in so much pain.
I canvassed peoples doses of ThyroidS a couple of weeks ago and most on less than 2! I dont understand whats going on with me either. I would wait to see what other people on here advise x
She's obviously under-medicated. So, the obvious thing to do is just keep increasing the dose.
Does she take her Thyroid S at least an hour away from food? Well, an hour before food or two hours after. Two hours away from most supplements and other medication. And four hours away from iron, vit D and magnesium.
Yes she does. She is pedantic about scheduling all of her supplements. I just have never heard of anyone on such high doses of Thyroid S. My gut tells me that she will end up somewhere in the 4 grains region. It's just a mystery re the sudden complete failure of her thyroid while on Wilson's protocol. Literally in a month's time, health went from fine to bed bound.
A lot of people don't believe in Wilson's protocol. Or Wilson, come to that. And, to be honest, it is based on a false premise: rT3 is bad. Dr Wilson developed his protocol a long time ago, when rT3 was considered to be bad. Now we know that it isn't. The patient doesn't convert very well, certainly. But the rT3 that results from high FT4 doesn't do any harm. The idea of clearing the T4 and rT3 out of the tissues is dubious. Neither of them stay there forever, T4 has a half-life of 7 days, and rT3 is gone in two hours. But, his idea of giving high doses of T3 and then 'weaning' off it repeatedly, could do more harm than good, in my opinion. Does it really stimulate the production of deiodinase to improve conversion? I have my doubts. It is not something I would want to try myself.
But, has she had her antibodies tested? Hashi's could cause the rapid decline.
4 grains of NDT is not such a high dose. Especially not if she has low stomach acid, affecting absorption. Myself, when I took NDT, I got up to 6 grains before abandoning NDT and going on to T3 only. But a consistant dose, not a cycling protocol! She needs what she needs, so don't be afraid of increasing the dose. Just do it very slowly, because it is so easy to miss one's sweet spot.
Thank you for your detailed response. She has had antibodies tested 3 times and all 3 times they were 0. I also was skeptical about Wilson's but she improved so markedly, especially her temperature, gut function and mood. We were all over the moon about it. Then she was travelling after about 6 months on the protocol and checked in with a naturopath in California who put her on T3 only for 2 months at a dose of 75 mg and it didn't seem to work. She started feeling bad and went back to cycling and seemed to do better until the almighty crash in September last year. It's hard to know who to listen to as we have been to 4 endos who tell her that her feeling poorly and gaining weight is teenage girl moods, which makes me crazy. Her lab tests clearly show something is awry and struggling to mark it. I want to believe that Thyroid S is the way to go because I prefer the natural route, but don't want to be swayed by my own preferences. I want her to have her life back. She has been battling her health issues for 3 years and no one doctor seems to be able to get a handle on it. She was diagnosed with ME in December and started on an LDN protocol. She takes her supplements and gets rest and does everything right, but nothing is helping the thyroid. Her TSH keeps going up and down and T3 and T4 not coming right. She was on Betaine for a while for low stomach acid a couple of years ago, but hasn't had symptoms since then. I wonder if that's an issue now.
In any case, I will tell her to raise her dose of Thyroid S to 3 grains and then every 2 weeks by half a grain? Then see where she is when gets to 4 grains. I just wonder if Levo with Cytomel added in isn't better. THoughts?
The first thing one has to get one's head around is the fact that endos know next to nothing about thyroid. Very few doctors of any sort know much about thyroid, but endos are usually diabetes specialist who think they can wing it with thyroid. So, you can't give much credence to anything they say. I think you've already had the proof of that!
I want to believe that Thyroid S is the way to go because I prefer the natural route
Yes. A lot of people say that. But that preference isn't always logical. Where thyroid is concerned there is no one-size-fits-all. We all react differently to the different treatments. And, to be perfectly honest, 'natural' is a bit of a misnomer. It's not really as natural as all that. The hormone itself does come from pigs, but most brands have as many fillers as any synthetic hormone pill. You can't make a pill without fillers. Also, the synthetic hormones are exactly the same as the hormones made by your own thyroid. And, some people - myself included - actually do better on synthetic hormone than they do on pig hormone. So, not only should your daughter not be swayed by that idea, but neither should you. It's what suits the individual that counts.
Her lab tests clearly show something is awry and struggling to mark it.
What is wrong is that she's under-medicated. That's all the blood tests show.
She was diagnosed with ME in December and started on an LDN protocol.
I may be wrong, but it was my belief that LDN only helped if it was an autoimmune disease. Not with ordinary primary hypo. And ME isn't autoimmune.
She takes her supplements and gets rest and does everything right, but nothing is helping the thyroid.
I think this might be another misconception. If you are hypo, for whatever reason, there is nothing that can be done to help the thyroid. You cannot cure hypothyroidism, nor bring a failing thyroid back to life. All you can do is take thyroid hormone replacement, such as NDT, to replace the hormone the thyroid cannot - and will never again - make enough of to make you well. And, of course, optimise any resulting nutrient deficiencies. But, none of that will 'help' the thyroid itself.
Her TSH keeps going up and down and T3 and T4 not coming right.
Does the TSH keep going up and down by itself? Or as a result of changes in her dose? If the doctors dose by TSH only, that is what is inevitably going to happen. Dosing by the TSH is wrong. The most important number is the FT3. And, when taking T3 in any way, the TSH is totally irrelevant except when it's high. If she has a doctor that believes that TSH should always be in-range, and adjusts the dose accordingly, then she will never be stable. Forget the TSH and concentrat on the FT3.
She was on Betaine for a while for low stomach acid a couple of years ago, but hasn't had symptoms since then. I wonder if that's an issue now.
What sort of symptoms are we talking about? You can have low stomach acid without any particular symptoms. But, malabsorption of nutrients and thyroid hormone is all the symptom she needs. Has she tried the bicarbonate of soda test to see if her stomach acid is still low?
In any case, I will tell her to raise her dose of Thyroid S to 3 grains and then every 2 weeks by half a grain?
No. She should only raise by 1/4 grain. And, hold for six weeks at 3 grains and then retest.
I just wonder if Levo with Cytomel added in isn't better. THoughts?
The only way to know that is to try it. BUT, she should give NDT a decent chance first. She's obviously under-medicated, so now is not the time to change. You change when your FT4 and FT3 have been at decent levels - i.e. nearer the top of the - range, for a couple of months, with no improvement. She hasn't reached that point yet. Too many changes too soon can be counterproductive.
Re NDT vs synthetic levo: I hear you and truly appreciate your input here.
Undermedicated - that was my first reaction to her labs, but have doubted myself because of opinions of doctors. I've been following this forum for a while and reading responses and came to the same conclusion, but was doubting myself.
ME and LDN - there has been a lot of empirical data through the LDN trust to show that it helps with inflammation for ME patients. She is giving it a try, but jury is out still whether it's helping. She was on it for a month and thought it wasn't working so stopped it and after a week ended up in bed so swollen that she couldn't move. So she started again. BUt there is a lot folded in here....she also started on NDT a month before, her TSH came down and then went up again without a change in NDT medication. At the same time got a chest infection and had to be on antibiotics - could have been an ebv flare, not sure. She lives 10000 miles away from me at university.
Supplements - she's trying to get her selenium, D, and ferritin levels up to optimize thyroid conversion and hoping that supplementation will help with symptoms.
TSH - fluctuating while on same dose. Goes up a dose, TSH goes down, then creeps back up again. T3 just hasn't gone up at all
Bicarb test - no haven't done it. Will try that first.
How long is a decent try on NDT? I feel like I'm messing with her life. She's been on it for 3 months increasing from 1 grain up to 3 starting today. I don't really know how long to give it.
Undermedicated - that was my first reaction to her labs, but have doubted myself because of opinions of doctors.
Don't doubt yourself. Doctors think that any result that is in-range has automatically got to be good. They are wrong.
ME and LDN - there has been a lot of empirical data through the LDN trust to show that it helps with inflammation for ME patients.
The question you have to ask yourself is: does ME even exist? Or has it been invented to explain the symptoms of under-medicated hypo when doctors do not even realise the patient is under-medicated. Being hypo will cause inflammation.
She was on it for a month and thought it wasn't working so stopped it
A month isn't long enough to tell if it's working or not. We have to cultivate patience, patience and more patience. Nothing happens quickly in the world of hormones.
she also started on NDT a month before, her TSH came down and then went up again without a change in NDT medication.
One should leave at least six weeks - or eight - before testing. Testing at four weeks can give false impressions. But, that could be an indication that she has Hashi's. Or, just an indication that she needed an increase in dose. Progress is not linear, levels go up and down. We have to accept that and not allow ourselves to be disheartened.
At the same time got a chest infection and had to be on antibiotics - could have been an ebv flare, not sure.
That, too, could be a reason for the TSH to rise. Infections affect conversion and therefore lower FT3, which will cause the TSH to rise.
she's trying to get her selenium, D, and ferritin levels up to optimize thyroid conversion
Did she get them tested before supplementing? Very, very important to do that, especially for vit D and iron. BUT if she's on NDT, conversion is not her problem - well, not one to be concerned about, anyway - and she cannot possibly know how good or bad her conversion is whilst taking NDT. You have to be on levo only to see how well you convert. So, how is she going to know if that's working? Conversion shouldn't be her main preoccupation at the moment. But, she does need all her nutrients optimal, for many reasons.
Has she had her B12 tested? That is also very, very important. And, if that is low, it will be making her feel terrible.
Goes up a dose, TSH goes down, then creeps back up again. T3 just hasn't gone up at all
As I said, that is a sign that she needs another increase. She's obviously not optimal yet.
How long is a decent try on NDT? I feel like I'm messing with her life. She's been on it for 3 months increasing from 1 grain up to 3 starting today.
How long is a piece of string? So, she's just gone up by 1/2 a grain? That's not good. As I said above, she should only increase by a quarter of a grain at a time. She will stress her body like that, and that will not make her feel better, it will make her feel worse. If I were her, I'd go down by 1/4 grain tomorrow, to 2 3/4 grains. Then go up to 3 grains in two weeks time. Then, hold for SIX weeks at least without changing anything, and then retest, see what her levels are then and how she feels. This is the mistake so many people make, changing too many things too quickly. Patience is the key.
I'm on 1+1/2 Thyroid S BUT I have Graves Disease and have had my thyroid ablated :
I think it comes down to one's own ability to convert the T4 into T3 - vitamins and minerals, especially ferritin, folate, B12 and vitamin D need to be at good, optimal levels and if these are at just mediocre levels, conversion of the T4 into T3 maybe compromised.
Since the body actually runs on T3 there is the possibility of dosing with just T3 thyroid hormone - but believe this needs careful consideration if all other avenues are closed.
Most NDT contains around 38 T4 and 9 T3 - and read a fully functioning thyroid would be supporting you daily with about 100 T4 plus 10 T3, with the average person using about 50 T3 just to function.
So if you work on the assumption that the person can't convert the T4 owing to a gene mutation or something else, they could need around 5 NDT grains/tablets giving a total T3 value of around 45 T3. daily.
I don't think there is much point comparing people's level of dose - we need what we need and if you go back 100 years, Natural Desiccated Thyroid, was dosed to the relief of symptoms, and the level needed to relieve the patients symptoms, was the level needed , as in those times patients were simply chewing a piece of a pigs thyroid, and a larger slice, proportion, would be dispensed if the patient was still with symptoms.
I believe years ago patients were dosed on much higher doses of Levothyroxine than they are nowadays - this poses many questions but I don't have any answers.
"TSH of 0.1; T4 normal and t3 just below normal range". Was this before she started any thyroid treatment? This would suggest a potential pituitary issue or some other illness that affected her thyroid.
'Wilson's temperature syndrome' does not exist, Wilson named it after himself and has been struck off after a patient died. These rapid changes in T3 dosage are dangerous and can suppress the pituitary and hypothalamus secretion of thyroid stimulating hormones (TRH and TSH).
Her more recent blood test results suggest her pituitary is working reasonably normal which suggests something was going on when she had the TSH of 0.1. Possibly some other illness that affected her pituitry / thyroid action. Alternatively, atheletes usually take many substances that have the potential to mess up the hormone system. These don't have to be banned substances, many supplements have known and unknown effects on hormones. If she is taking any fitness supplements I would discontinue them.
For the moment I would revert to treatment with levothyroxine. It is not the optimal treatment for many patients but it does make it easy to monitor and observe how TSH, fT3, fT4 are behaving. Unfortunately, she started off on the most extreme and unproven treatment (Wilson) which has the potential to mess up her thyroid axis and blood test results. I would start from the basic (levothyroxine) treatment and then introduce T3 once she has got her fT4 towards its upper limit.
Her TSH of 0.1....that was before starting any thyroid treatment. I fear that her system has been completely screwed with because the "real" doctors kept sending us away when she had low temperature, severe brain fog, no energy, amenorhea and no gut functioning. We went to integrative doctors who put her on the T3 protocol and things came right until they crashed a year later. She has regular periods now after being on Thyroid S for the first time in 3 years, but her levels are not right. She was an elite athlete until 2 and a half years ago when she had a hip reconstruction and had to walk away from sport. Even when she was an athlete, she never took fitness supplements outside of vitamins. She was on Mediclear by Thorne for a while because she had ebv, which cleared up her high viral count and low neutrophils, which she battled for 2 years. So EBV and ME are also part of the picture. We can't find a doctor to put all of the pieces together. Her viral loads are low now and not active but she is susceptible to a lot of upper respiratory infections.
The supplements that she's on at the moment are Magnesium, D, B Active, Ashwaganda, Rhodiola, Zinplex, mega food iron and melatonin at night to help with sleep patterns. On top of daily probiotics and LDN at night.
Feels like a lot for a young girl and she just wants to be a normal teenager.
Thank you for these links. I will look. But she has no antibodies, i.e., no hashimotos. I'm praying for spontaneous healing and that her thyroid just needs to recover from multiple viruses, and misdiagnosis. It's a mother's prayer, I suppose, to wake up from this nightmare or at least find a doctor who can connect the dots and wants to find an answer to the riddle. I am a scientist and have been trying to manage the situation, but I can't find a pattern. SHe has also had an ultrasound and no nodules or irregularities on her thyroid. All normal...
That is a lot, I'm so sorry. There is a condition called 'non-thyroidal illness' (NTI) which describes severe illnesses such as burns and cardiac attacks. In these cases the hypothalmus, pituitary, thyroid and other organs all work together in complex ways (that aren't understood) to protect the body and slow down metabolism in various organs. Hip reconstruction which is a major operation could come under this description. The advice is that thyroid blood tests can be really weird for a time, that they come back to normal after a little while. Hence, thyroid blood tests should be ignored in these circumstances. In your daughter's case I think we can ignore the first blood test when her TSH was 0.1, asssuming this was not long after her operation. This excludes any need to worry about her pituitary - it was performing how it should do after a major body insult (the hip operation).
My doctor who was a virologist who treated thyroid patients has said that he noticed a lot of patients tend to become hypothyroid after contracting ebv. So, perhaps this was the trigger. If this is the case we would expect TSH to shoot up when her thyroid comes under autoimmune attack and produces less hormone. However, since she probably had NTI from her operation this may have prevented the TSH going up and hence the diagnosis was missed. (It shouldn't be missed, the doctors should look at signs and symptoms but they never do).
Her current hormone levels TSH 1.89mIU/L (0.3-4.0), Free T4 0.8 (0.8-1.7ng/dL),
Free T3 1.9 (2.0-4.8pg/mL) are not too bad but it is very difficult to interpret the results when the patient is on NDT, it all depends on how long after the last dose the blood was taken. Her TSH suggests she could increase her dose a little, although I think it might be better to include some levothyroxine.
I don't know about her supplements but I would discontinue the melatonin if possible. I take some L-T3 and I have found that my cognitive function is much better if I get the bedtime dose right. Too little and I fall asleep but keep waking up. Too much and I feel wired and take a while to sleep. When I get it right my sleep is deep with vivid dreams, too little hormone and my dreams are fuzzy and vague. This is important as the brain works hard at night. Also, growth hormone (GH) is produced during deep sleep. GH is important for tissue repair needed because of microtrauma that occurs during the day. I would not take anything that interferes with normal sleep patterns, rather try and regularise sleep by natural means. It is useful to take magnesium supplements (not oxided or hydroxide) as magnesium helps with sleep and also prevents hyperalgesia (excess sensitivity to pain). I'd tend to discontinue the other supplements unless she sees a clear benefit, if only to save money.
I don't believe she has ME, doctors use ME as a diagnosis when they have no idea, it is likely to be consequences of hypothyroidism. She should try to exercise within limits and get fresh air (if possible with COVID-19). There are environmental toxines (Endocrine Disrupting Chemicals - EDCs) which affect the function of thyroid hormone. These can build up in the body if one is inactive, so a little exercise and fresh air can help. You can also damp dust or HEPA vacuum the home occasionally and keep it ventilated when practical.
Whatever, thyroid supplement she uses I would take it slowly and try to keep her TSH above e.g. 0.4. It may be she needs more hormone but try to avoid supressing the TSH for a few months. A very low TSH brings its own problems so it's good to avoid it if possible.
Perhaps the fillers in Thai S that disagree with your daughter. It might be worthwhile trying a different NDT or glandular supplement to see if the fillers in with the thyroid meds might be more agreeable to your daughter.
Thai S (& ThyroGold) very much disagreed with me after being fine on old formula RLCs WP thyroid (hypoallergenic fillers) then Nature Throid. I swapped to Metavive glandular supplement (with a rice bran filler) last year & have been fine on this too. I’m awaiting delivery of a different brand with a rose hip filler to try.
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