My daughter's recent blood results are of great concern. She has Hashimoto's and Down's Syndrome and bad Psoriasis and Alopecia. She was first diagnosed as hypo. 17 years ago ( when she was aged 10 ). She takes 3 grains of NDT and 12.5mcg of T3 daily, in split doses. ( 2NDT + 12.5mcg T3 mornings and 1NDT afternoons ).
Her latest results are as follows -
Blood taken at noon 28.1.16 ( with no thyroid meds. that morning ) TSH 0.28 T4 9.7 T3 6.5
ditto 3.2.16 ( with morning dose as above at 9.00am ) TSH 0.16 T4 11.9 T3 12.5
I cannot understand why the T4 is so low when compared to a very low TSH.
Any help and advice would be greatly appreciated.
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scood
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hi there i don't suffer from thyroid problems but my thoughts and prays are with you all sorry can't advice you but i'm thinking about you know take care Alan xx
If I were you, I would put her on Nature Thyroid, which has T1,2,3 and 4. Put her on a gluten free low carb diet. You should start seeing a change for the better in 2 - 3 months.
Keeping my fingers and toes crossed for you. This too will come to pass. Better days ahead.
As dumb as it sounds, I didn't know that. Since starting Naturethroid, I have felt so much better. I assumed it was because it had T1,2,3,and 4 in it and other thyroid meds like Synthroid did not. I thought this brand was unique. I know some people take additional T3. I read that Armour was not as effective. After Googling NDT, I realize there are many brands. Perhaps they are all equally effective. I just don't know.
Well, I Don't know about equally effective. The point is, we're all different, and we all have to find the one that suits us best. For some people, that is Armour. For others, it's something else. Personally, I couldn't tolerate any of them. I'm best on T3. So, I would never Knock one, or praise another as being the best. Not even Levo, because lots of people are quite happy on that.
All NDTs contain a fixed amount of T4 and T3. But we Don't really know about T2 and T1. There might be some, or there might not. In any, case it would probably be immeasurable because the gland only puts out teeny tiny amounts. Most is converted in the body - T2 from T3 and rT3, and T1 from T2. So, I wouldn't count on the possibility of having T2 and T1 in a pill making all that much difference.
No-one really knows why those that feel better on NDT feel better on NDT. Maybe because their bodies Don't like synthetics. My body didn't like NDT. We're all different, as I said. Unfortunately, doctors refuse to recognise this. One told me that the only thing different about me was my name - and even that wasn't all that original! They get such a kick out of being rude, Don't they. Anyway, in an ideal world, we would be allowed to chose the one that suits us best. In this world, we have to hope to hit on it by luck.
Because Naturethroid comes from a pig"s thyroid, and our makeup is similar. I figured this was almost like getting a thyroid replacement. I no longer have to take two pills; Synthroid and Cytomel, and keep adjusting. No more naps every afternoon. I finally feel almost normal. I realize we're all differt. I had asked my doctor for Armour, and she said Naturethroid was better because of T1,2,3 and 4, and in my case it worked.
But any thyroid medication we swallow is going through a very different pathway to the thyroid hormones secreted by our own thyroids (if they work!).
All USA desiccated thyroid products contain Thyroid USP and, certainly a few years ago, there was only one USA manufacturer of Thyroid USP powder. There may be differences (e.g. what they use a a diluent to standardise the potency), and the excipients are different.
How do you think we should take our thyroid medication?
I take bio-identical hormones. My estrogen, called biest comes in cream form that I rub on veins or pulse points. My progesterone for some reason does not absorb well through the skin, so I take it in pill form. So I'm open to other ways of taking medication. However, currently my thyroid medicaton is working, so I'd be reluctant to change anything.
Just because your doctor said it, doesn't make it true. How would she know what is 'better'? She doesn't take it.
Armour and all the other NDTs contain T3 and T4 - although, as l said, it's never actually been proved that any of them contain T2 and T1 - not just Naturethroid.
But if coming from pig thyroid, and our make-up being similar to a pig, makes it superior to synthetic T4 and T3, why doesn't it suit everyone? More likely you were just lucky finding the form of thyroid hormone replacement that suited you fairly easily.
I received an email last year from someone called "Thyroid Mom" she said that Naturethroid had worked for her, however she still needed T3 in the afternoon. She was also off carbs and gluten. Doesn't drink alcohol, or coffee and of course exercises daily. She felt she had completely recovered.
That's kind of how this whole thing started. I felt as though I was sleep walking through life. I am not as strict with my diet as thyroid Mom. I have a drink every night. I have sweet things more often then I should. I'm not afraid of dairy, and I feel good. Still weight 15lbs to much, but I find loosing weight is almost impossible for me. I know this is just my story, and it probably won't work for everyone. By the way I'm almost 70.
I have always had a very slow metabolism. Bp 118/60, resting paulse 55. I try to exercise every day. Walk about 4 or 5 miles, lift light weights twice a week, do a little yoga in my bedroom in the morning. I live at sea level in the winter, and the mountains in summer, I think this might be part of my problem, as I feel healthiest in Florida. Well I've rambled on long enough, hope it was helpful.
I'm nearly 71. But I'm not sure who you were trying to help.
However, I would just say that maybe all that exercising is the reason you can't lose weight. Exercising uses up your T3, so if you Don't have enough to begin with - or if you have only just enough - then exercising is going to leave you more hypo. Walking and yoga are good, but I'm not sure about the weight-lifting. That might just be a step too far for you. Hypo weight-gain has nothing to do with calories.
If you've always had a slow metabolism, then you have possibly always been hypo. Sounds to me as if you need a slight increase in dose.
On NDT, I was very ill - virtually bed-bound - and put on a ton of weight.
I'd started out, like most people, on Levo only. I didn't have many symptoms at the time I was diagnosed, it was mainly weight-gain and hair-loss, but I soon developed some when I started Levo. I became very tired, and put on more weight.
Then, I tried T4 + T3, and felt a bit better, and started to lose a bit of weight.
Then, I went on to Armour, and went rapidly down-hill. I became very depressed, Moody, aggressive as well as the rest. A lot of muscle pain and muscle wastage, couldn't hardly walk, or stand for very long. The only thing that improved was my hair! I tried various other brands, but without much success. The best one for me was Thiroyd, but I was still very ill.
So, then I tried T3 only. And, at last, I started to improve. Except for the hair. Haven't made much progress there, I'm afraid. But I have lost an awful lot of weight, without trying. So, that's the best for me.
I haven't had a blood test for a very long time, because I self-treat. But last time I did have one - three or so years ago - the T4 was very low. Can't remember the exact figures off-hand, but I know both TSH and FT4 were very low. I Don't really have a working gland, and I'm not taking any T4, so that's normal.
Scood, Midnight Blue is correct. When taking any form of T3, the FT4 will be low because the body doesn't need as much of it for conversion, so doesn't hang on to it as much as if she were taking T4 alone. It's OK. It doesn't matter.
However, her FT3 looks very high in that last test - although you Don't give the ranges - please, always give the ranges when you give results. Did she take her pills before the test, that morning? She may be on too high a dose, but how does she feel? That's the most important question.
it says she took her meds 3 hours earlier on the high test.
The T3 will be half that 5 hours later so i wouldnt worry. Same thing happened to me, endo do test i told her i had taken 3 x NDT 3 hours earlier, she said she would take it into the equation but obvs didnt and completely freaked out. I saw her snr endo 3 weeks later and he said it was normal to be over twice the usual reading if meds taken, T3 peaks 3=4 hours after taking.
Ok, I miss-read it. Sorry. It is dangerous to take the hormone on the day of the test - before the test - because doctors think it doesn't make any difference (one wonders where they were when logic was handed out!).
luckily for me the snr endo understood the difference. I did say i didnt want to do test that day as i had taken my NDT, also i had test done 2 weeks earlier, ready for the appointment.
She caused such a fuss over the result i refused to see her as obvs had no idea what she was doing and got to see someone better. Thank goodness my next endo appt not till september, they are a shambles in Leicester.
It is OK to have a low T4 when on NDTs but the T3 should be high in range. I cant see if it is because of not having a range to guide. I wonder if her loss of hair might be a low B12. It might be worth looking at Dr Chandrys B12 website. Just google Dr Chandry. B12 deficiency is common in people with thyroid problems and not picked up very well by most GPs.
Our daughter did have a test for B12 two years ago. The reading was 1189 and the upper limit of the range is 663. No vitamin supplements were involved. Can it be too high and therefore create problems?
I can only comment on myself but am on a NDT and once I had optimised my dose I have never had a low Ft4! I was told by a thyroid specialist that usually a low ft4 occurs when the dose is a little low but you are still converting well when the ft3 is high in range. Simply put means you are not building up the the Ft4 stores but running them down. As Ft4 is the storage form of thyroid hormone -not the useable form which is T3. Ft3 tests are notoriously unreliable as your ft3 fluctuates widely in your body during the day. But ft4 does not and is far more stable changing slowly.
In your shoes though you haven't given the ranges I would go on the ft4 level. Has she said how she is feeling -are there any signs symptoms such as bloating, constipation, dry skin /eyes, low temperature. I know weight gain is an issue for people with Downs so not the best guide maybe for her.
The best time really to take a blood test is first thing in the morning, fasting and no thyroid meds. Midday am assuming she had eaten? This may have affected her result plus the time of day.
Hi scood. Thanks for the further info. As her temp and pulse is on the low side plus the low ft4 on both blood tests based on the ranges in my area (they vary from lab to lab so if you have them can you post them -they're the figures in brackets next to the result figure) it points to be under medicated. An increase is probably the way to go.
Sorry just seen you've posted the ranges -and as I suspected her ft4 is very low in range and slightly below. Still pointing to be under medicated. Do you split her dose during the day -might be worth doing that too.
Are there any contrary indications such as existing heart problem? I only ask because if so you would probably be wise to consult with a medical professional who you have confidence in.
Am not a medic so my comments are only based on my own experience of treating my hypothyroidism.
The ranges given on the tests results papers are as follows -
TSH : 0.3 - 5.5
T4 : 12 -22
T3 : 3.1 - 6.8
As I said earlier, the first test was with no thyroid meds. that morning and the second one was three hours after taking morning thyroid meds.
She is somewhat depressed but the real puzzle is that she has no stamina or energy at all. With the current readings and the fact that she used to be such a live wire I would have thought that she would be on the edge of being hyper now.
The clinical scientist who analysed the blood wrote - "low TSH and T4 Non-thyroidal illness? Pituitary disease? " He also tested the Cortisol and Prolactin which are said to be ok.
B12 tested 2 years ago and level of around 1200 ( upper range limit around 700 ) Sorry I don't have exact figures to hand.
Scood, quite frankly, l think you have room for a bit of an increase, there.
But, how long has she been on NDT? Has she improved at all on it, compared to T4 only? Has she been on T4 only? And, just out of curiosity, why did she have two tests so close together? What were you expecting to change?
Has she tried T3 only? It could be T4 just doesn't suit her. And if she can't convert very well, she doesn't want unconverted T4 floating around.
But whatever you do, don't worry about the low T4 when shes taking any form of T3. Some of us live very well without any T4 at all. And don't worry about the TSH going low, it isn't very low at the moment, but even if it's supressed, it doesn't matter.
Our daughter was on T4 only from 1999 - 2011. TSH often in double figures, several hypo. symptoms, particularly lots of weight gain.
We found out about NDT through a homeopathic doctor. Changed from all T4 to all NDT. Initially, rapid weight loss, lots of energy and much better readings. Things were then stable for some time.
Latterly, weight gain and tiredness so tried T3 / NDT combo. A year ago this combo worked well.
She has never had just T3 on its own.
The two tests were so close together because I rang the clinical scientist who did the first test. He happened to have some of our daughter's blood that was just being tested for liver function etc as she had been taking Olanzapine. He kindly offered to test this new sample for TSH etc. I pointed out that the first test was after no food or meds that morning and the second test was after morning food and meds so it was an interesting comparison.
Am obviously on a go slow today. Re FT3 I note that the first one is in range and the second one taken AFTER her thyroid meds and breakfast is the high ft3 -that's why it's high. The T3 in the NDT will have skewed the results. So I would not be bothered by the result. I would go on the previous result which shows a normal in range ft3 and a low ft4. Still stand by what I said before and would look at raising her dose as per her symptoms,signs (extreme lethargy) and low ft4. . What dose is she on currently?
Also when I do my bloods I don't take any NDT for over 24hrs before -some people leave it longer.
Scood's daughter is also taking liothyronine. Seems there's no absorption problem for the synthetic but maybe there is with the dessicated thyroid.
She should possibly have her hemoglobin A1c tested. If she's overweight and inactive, the liothyronine may be kicking her blood glucose around and that will cause lack of energy.
Good that you have a glucosemeter. Why do you have a glucosemeter at home?
What you need to check is her blood glucose 30, 60, 120 minutes after eating. See if her blood sugars go very high. And if they do, check 3 and 4 hours after eating if they go very low.
If they don't rise over 7 to 8, then it's okay. But check at 3 and 4 hours if blood glucose goes too low, as in below 3.5.
There's a blog, Tired Thyroid were it is explained that for some people, liothyronine and the T3 part in dessicated thyroid can cause large blood glucose fluctuations.
Hemoglobin A1c is a test which basically provides the average of what blood glucose levels have been like over the previous approximate 90 days. It is used to monitor diabetes. However, with liothyronine, blood sugars can spike very high for a couple of hours, and go down quickly so the above test will not catch this sort of problem.
She's got a lot of information on her blog and of most of the blogs around for thyroid, I think hers is the best. She's not pushing for NDT or T3 or anything. Just the facts, ma'am.
Interesting -I hadn't realised she is Liothyorine as well as the NDT that would explain the higher levels of t3 to t4. Did she not do well on NDT on its own?
Sorry for the delay - we have been out. I have answered below.
The daily dosage is split as follows - 2 grains NDT + 12.5mcg T3 around 8.30am then 1 grain NDT around 4.00pm. Both doses are at taken at least 30 mins away from any food or drink.
Her readings on NDT alone were unstable and we thought that T3 may help to increase her energy levels.
There are no known heart conditions.
Sadly we do not have any medics. that we have confidence in.
Well it could be that the T3 on top of NDT is too much for her -and this can cause tiredness in itself. Your current dosing is egging her toward T3 treatment hence the low Ft4 blood tests. Am sorry if I had read your post throughly I would have realised this -so sorry!
I can't comment from experience on combining these two together but am intrigued given her low ft4 whether you tried a higher dose of NDT to increase her Ft4 levels before adding the Liothyroine in? Did the blood results on NDT only show a conversion problem? That is she had high T4 levels but low T3? When you say unstable on NDT only -what made you think this?
You say that T3 on top of NDT could be too much and can cause tiredness. Could you explain further? I have only a little knowledge but assumed that too big a dosage would create obvious hyper. symptoms.
A while ago she had several months on the current doses of T3 and NDT. Her readings were good and overall she was reasonable. We stopped the T3 because the TSH was 0.5. Five months later, in May 2015, ( on 3 grains NDT ) the TSH was still 0.8. Unfortunately, neither of these tests gave any levels for T4 or T3.
However, a few months later, ( Sep. ) the TSH was 21 the T4 was 7.3 and the T3 was 4.2. She had been taking an antidepressant for a couple of months, called Sertraline which was then stopped.
In November, 2 months after the Sertraline was stopped the test results were TSH 9 and T4 9.4 ( no T3 result given ).
So, throughout these 6 months she had been taking 3 grains of NDT constantly but with wild variations in the results. Even if the Sertraline caused problems, it had been stopped for 2 months at the time of the November results above.
This is why we re-introduced the T3. The figures that I gave in my first post were after she had been taking 12.5mcg T3 and 3 NDT for 2 months ( Jan. 2016 )
As I have said before the recommended levels are -
TSH - ( 0.3 -5.5 )
T4 - ( 12 -22 )
T3 - ( 3.1 - 6.8 )
I would be grateful for any advice as we end up feeling tied up in knots.
In the future, please post units on the test results with the range.
Each grain of NDT contains 38mcg T4, and 9mcg T3. So your daughter is getting 3*9+12.5=39.5mcg T3. She is also getting 3*38=114mcg T4. That is a T3:T4 ratio of 1:2.9. I.e. quite a bit of T3. T3 is what really drives TSH down. Using the T3 power factor of 3-4, you could reduce T3 some and increase T4. My T3:T4 ratio is 1:5, and I'm doing quite well on that.
But why are you worried about this? The AACE range for TSH is 0.3<TSH<3.0. So TSH=0.28 isn't all that low. I wouldn't worry about TSH unless it goes below 0.1. Is your daughter showing positive for thyroid antibodies (TPO, TG)?
As far as psoriasis and alopecia: skin problems are common in people who consume gluten. Virtually all the parents of DS kids I know, have removed gluten from their kids diets. And your daughter may also have allergies to other problem foods (gluten, dairy, and soy are the allergy top 3). Have you tried dietary modification?
I meant to say that I understood that psoriasis and alopecia were both autoimmune conditions, as is the Hashimoto's Thyroiditis that our daughter has. But no doubt dietary changes can help.
I must respectfully disagree with you, Eddie. The TSH is irrelevant. It doesn't matter how low it goes. And her T3 dose is not that high. A lot of people takea lot more. As she still has a lot of symptoms on that dose, there could be a bit of hormone resistance, meaning she needs a high dose. And if she doesn't convert very well - as she probably doesn't, being Hashis - the T4/ T3 ratio is irrelevant as well. It's a huge mistake to be tied to the numbers and ignore the symptoms. And one that most doctors make.
I must respectfully disagree with you. It's fine for me to drive my TSH as low as I want. But having been the parent of a special-needs child, I know we cannot reliably depend on our child to understand, by feeling, whether he/she is in a state of hyperthyroidism. I encouraged this parent not to be concerned if the TSH is as low as 0.1. But numbers below 0.1 are a gray area, based on information in a meta-study I read at pharmacist.com some years ago; that meta-study claimed that negative events could occur when TSH went below 0.04. At any rate, the T3 of 6.5 (range 3.1-6.8) is so close to top of range, that it's not clear to me that more T3 (and the lower TSH that goes with it) would have a positive therapeutic effect.
Lots and lots of studies have shown that the TSH is irrelevant once you are on thyroid hormone replacement. The FT3 is the important number, and she's having the FT3 tested - unlike a lot of patients. She should be guided by that.
Besides, I admit that I've never had a special-needs child, but surely a mother knows her own child and can tell whether she's feeling off or feeling good. Well, I would have thought so, anyway.
Even so, dosing by the TSH is known to keep the patient sick. We see it on here all the time. Did you see this post today?
And ranges are man-made - not handed down with the Ten Commandments - and fallable. Some people just need their FT3 slightly over-range to feel well. I really Don't know how you can say that increasing the dose won't have a positive effect. What evidence do you have of that?
The point I am trying to make here (from personal experience: dealing with my own celiac-enteropathy-Hashis-hypothyroid-hypoadrenal-hypoprotein syndrome) is that, when thyroid treatment has been optimized to the degree which this girl's treatment has been optimized, it is probably time to look at other factors. It is tempting to think that just a bit more thyroid will relieve symptoms. But look at what else is going on: the girl has Hashimoto's, and apparently there has been no concerted effort to get antibodies down. (Mom, is that the case? I came to that conclusion from comments previously made by Mom.) I think we all know that autoimmunity, just by itself, produces symptoms. In addition, we have the issue that the girl has Down's Syndrome. It is well known that people with Down's have a high rate of hypothyroidism; it is also well known that they have food sensitivities, and especially to gluten. That means the girl is probably harboring enteropathy/leaky gut.
Several years ago, when I was just getting my thyroid hormone treatment to the point where I was truly euthyroid, the Dr. and I kept doing testing and fooling with hormone dosage changes, to try to see if that would get rid of the last major symptom. It didn't; all it did was cause my insurer to stop paying for testing because they capitate. The one remaining major symptom was actually due to another issue: deficiency of amino acids, esp. threonine, apparently caused by long-term permanent gut damage from celiac.
OK, got you now. Sorry for the confusion. Yes, I agree. Up to a point. But no harm in trying a tiny increase that will raise her FT3 to the top of the range. But still ignoring the TSH.
I'm not sure where scood is, but I really can't imagine trying to get an NHS doctor to take amino acids seriously. Most of them are far too ignorant for that. Are there tests for amino acids?
Amino acids are just one example. That was my problem, but the girl may have something totally different going on. Obviously, having autoimmunity on top of Downs is a huge concern. But if she also has an amino acids problem, I'm quite sure no NHS doctor would even notice low Total Blood Protein, if she was ever given that test. If TBP is low, the proper response is to administer an amino acids profile test and then dose with the essentials that are low; but I doubt the NHS knows what an amino profile test is, nor would they pay for it.
Sorry for the delay but I have been very busy. Thanks for your interest.
You asked about antibodies.
A test in June 2014 showed as follows -
Thyroglobulin - 23i.u. / ml ( 0 - 40 )
Peroxidase - 285 i.u. / ml ( 0 - 35 )
You said that no effort has been made to get the antibodies down and you are correct - but what can be done to reduce the antibodies?
Almost 4 years ago, our daughter did have a coeliac test. The serum tissue transglutaminase level was 0.9 u / ml ( 0.0 - 5.0 ). It said that coeliac disease was unlikely.
You mention enteropathy/leaky gut. Could this still be the case and how can it be tested? ( We are in England )
Antibodies are essentially an environmental health problem. I.e. reactive/toxic foods, general environmental pollution. The most reactive food is gluten, followed by dairy; and some non-foods like artificial sweeteners are suspect. There are many chemicals thought to cause autoimmunity, such as perchlorates. You should cruise the thyroid sites such as thyroid.about.com, and do some searching on thyroid autoimmunity, to get additional clues. Unfortunately, I doubt there are any NHS Drs competent to advise you on this.
I have no idea whether fecal testing is available in England. Some years back, I learned about Dr. Kenny Davin Fine who operates intestinalhealth.org out of Dallas, TX. His tests for bowel function are offered through enterolab.com. I did a test thru his company and, although I don't remember all the chemical details, one key finding in fecal testing is that the bowel is not functioning correctly when there is poor absorption of fats.
You don't need a formal celiac diagnosis to be gluten-sensitive and have it tear down gut health. I don't have the HLA-DQ2 or HLA-DQ8 celiac genes, but gluten did destroy my health.
Too true Greygoose!! I feel I've been stumbling around with my answers in this post as I didn't read the info properly in the first place (my fault -sorry) and didn't have all the info in the second place.
So I agree with you -Hashimosis can indeed affect conversion rate and there is a higher incidence of people doing better on T3 only treatment.
However it is more complicated with person with Downs as T3 only treatment is rigorous and complex as its best taken with several doses per days, involves self monitoring and as the effects are faster it can cause highs and lows if not carefully managed. Also being more complicated as if her thyroid is partly working at times it could be that her needs are always changing. Not an easy situation.
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