I just told my GP that I have switched to NDT because she asked to see me after my latest blood test.
My TSH (previously never below 3) was 0.02 (range 0.3 - 4.5) and the recommendation was to lower my Levo dose, so I had to tell her I had started on NDT since my last test.
As you can imagine she is not at all happy and says I risk heart attack and osteoporosis.
My Mum has osteoporosis (also Hypothyroid on Levothyroxine) so I do need to be careful about risks.
Any advice re: TSH of 0.02 and osteoporosis? I guess I need to lower my NDT dose a bit, I'm up to 2 1/4 tabs/grains (Thiroyd from Thailand) so perhaps I'll try just 2 tabs?
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Raucous
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That isn't true that we'll develop heart or osteoporosis if the TSH is low, especially as you are taking NDT which contains all of the hormones our thyroid gland would have produced if healthy.
There have been studies by researchers on the Tyranny of the TSH and that's what it is - a tyranny.
Before blood tests and levothyroxine were introduced we were given NDT until we had no clinical symptoms. As far as I know there wasn't CFS, Fibro then and believe these were only named after levo and blood tests were introduced.
I think on NDT you'd have less chance of developing osteo or heart problems. (I am not medically qualified but I shall give you a few links).
By the way, if someone has thyroid cancer they will be on a suppressed dose of levothyroxine for life. Do they develop osteo or heart problems?
Two extracts:
You notice that I didn’t include blood tests for your TSH, free T4, and free T3 levels. These tests are of limited value. They are meaningful only when they are way out of range. If they are in-range or close to in-range, they are useless in telling your whether you have enough thyroid hormone regulation. The only thing they tell us is the effect of the pituitary’s TSH on the thyroid gland, and the effect of the thyroid gland’s hormones on the pituitary. They tell us nothing whatever about the effects of thyroid hormone on the cells of any other body tissues. To infer from the levels of these hormones the thyroid or metabolic status of other tissues is not only indirect—it’s a wild and scientifically-unsound inference. and
When you asked your doctor that question, you were on the right track. He, on the other hand, was way off track. It appears that he was taking part in the modern medical disaster I’ve called the “endocrinology paradigm of hypothyroidism.”[1] From participating in that disaster, he undoubtedly didn’t have the information you asked for, despite it being readily available to any inquisitive person, especially doctors. You’ve undoubtedly suffered from his neglect. I regret that and hope you'll move on to a better educated doctor who can help you recover good health.
Thank you shaws - I'll take a look at those. So far I've read that both low TSH & high TSH can be linked with bone loss but as we all know it is more complicated than direct causation. I suppose I have no way of knowing my bone density without a GP ordering a scan do I? so I can't even monitor it.
There can be a problem if a person takes too much thyroid hormone and becomes hyperthyroid. But hyperthyroidism is not indicated by TSH levels (especially when someone is taking T3 in any form [which includes NDT]). Rather, it is the person's symptoms that indicates whether or not a person is hyperthyroid.
A great article on the subject states:
"...However, for the vast majority of hypothyroid patients taking natural dessicated thyroid (Nature-throid- RLC labs) a suppressed TSH merely indicates adequate treatment dosage with full clinical benefit, and does not correspond with the clinical signs and symptoms (or laboratory findings) of thyroid excess."
You will enjoy the article and realize you have nothing to worry about as long as you show no symptoms of being hyperthyroid. If you do, simply back off your dosage. I do not see the need for changing your NDT dose unless you develop hyperthyroid symptoms.
My TSH has been suppressed for over 10 years. I've been taking NDT for the last 6 years. Don't let GPs scare you with threats of heart disease and osteoporosis. They do not understand the science and research paper findings or the risks of being under medicated. It is exasperating and frustrating but trust your instincts. If I listened to my GP I would be very unwell now and probably unable to work.
Raucous - why not ask your GP for proof of this ie research papers? Bet she can't provide any, she is scaremongering plain and simple. This is all about her covering her back and protecting her job and NOT about the patient.
I was tempted but I know it would be pointless as she is mostly concerned about staying within guidelines (she didn't even know what NDT was), I offered to send her some of the research I have read but she said I could though she probably wouldn't have time.
I also mentioned that there were GPs in this country that prescribe NDT one of which is a few miles away but I'm not in their area, so she suggested I write to them and ask if I can register explaining it was because of the NDT and that if i agreed not to ask for home visits they might consider it - I may give it a go.
Raucous - I would highly recommend obtaining a copy of all of your medical records to find out when your TSH first became raised. Untreated hypothyroidism can lead to osteoporosis as I've found out.
Good idea! All your GP wants is to be covered in the event something goes awry. The GP has to follow conventional protocol. That protocol is not set up for T3 that the NDT adds to your medication. Your doctor is used to T4 medications only.
The T3 suppresses the TSH so the TSH is rendered useless for maintenance purposes (it's useless anyway, for the most part, but conventional doctors don't have a clue about that). Doctors need to go by how the patient feels and not what the TSH seemingly "indicates."
Getting a letter from another health professional giving their professional opinion regarding T3 and how it suppresses the TSH (and is fine in that regard) will serve to keep your doctor from feeling she must let you go as a patient because you're not following the thyroid replacement guidelines that she is supposed to use.
I have a feeling your doctor is interested in finding out more how NDT works. The more she has proof of its success, the more it may be likely that she will lose her unfounded fears of it and begin to use it in her practice.
You were under medicated to have TSH 3.0 when you were taking Levothyroxine.
Suppressed TSH does not mean you are over medicated as long as FT3 remains within range. Some people do need very low or even suppressed TSH in order to have sufficient FT4 to convert to T3. As long as FT3 remains within range having suppressed TSH does not mean the patient is over medicated. Read Treatment Options in thyroiduk.org.uk/tuk/about_...
It's unlikely your GP will order FT3 which is rarely tested in primary care but you can order Blue Horizon Thyroid Plus 6 which tests TSH, FT4 and FT3 via thyroiduk.org.uk/tuk/testin...
The Rotterdam Study finds no association between TSH and atrial fibrillation and a meta-analyis of patients with TSH suppressed <0.1 found one extra hip fracture per 1,000 patient years.
Do you think I can find that Rotterdam study online? Would be good to have as arsenal!
I was undermedicated or years but only recently started to research. I did a Blue horizon test before I started NDT (April 2016) and my free T3 was bottom end of range, but I had high Reverse T3 and High Tgb antibodies.
The Rotterdam Study did not seem to include ft3 in their study only ft4 and TSH. " A limitation of our study is that despite this amount of variables included in the analyses, residual confounding cannot be excluded. Measurements of total T3 and free T3 are not available in the RS and therefore the association between these thyroid function markers and AF could not be assessed. - See more at: press.endocrine.org/doi/10....
Recent studies have found NO LINK between NDT and Osteoporosis, so your GP is out of touch. If you are susceptible to osteoporosis what is your GP actively doing about it? 2 1/4 tabs of Thiroyd is quite a large dose, so maybe reducing slightly is the answer, but you should dose on symptoms, not always numbers.
no don't go down lower check your temperature if your temperature is below 97 .9 then you are still to low my TSH is .02 also and that is ideal they have discovered I have an article but I lost it remember where it went but I've even had a medical doctor tell me that she felt better when hers was low go according to your symptoms you're supposed to raise the NDT until all your symptoms are gone especially your temperature check it when you wake up in the morning before you get out of bed that's your basal temperature research this some more stop the thyroid madness talks about it this is really the best indicator as to whether or not you are at the right level don't pay attention to the numbers you are not a number
A good idea....just what I was thinking.My Endo prescribed T3 for me and I also did a spell on Armour but returned to T3/T4 combo as it was easier to adjust dose if needed as didn't want TSH to go any lower,so can raise T3 on it's own if needed.My Endo sent me for a bone density scan Just to be safe and all was well and no further test needed. It will put your mind at rest if you think you might be at risk.
Do you know the cause of your hypothyroidism? I have the autoimmune version (Hashimoto's disease), and I need a TSH suppressive dose of NDT (and previously of levo, which in my case amounted to 200 mcg daily minimum) to keep my antibodies under control. My anti-TPO levels, which were +6000 UI/mL at the time of diagnosis (16 years ago), are now <6 which is the lab's reference range. As long as I maintained a so called normal TSH (the first doctors who treated me wanted a TSH around 1.5), my antibody levels remained high. I personally feel better when they are almost unmeasurable, but that requires my TSH to be suppressed.
My fiest test back in April (pre NDT) showed very high antibodies (Anti-Tgb) but quite low Anti-Tpo so yes I think it is autoimmune - my sister also has autoimmune hypothyroidism with vitiligo and my Mum is also Hypothyroid.
The GP is not remotely interested in whether it is autoimmune or even whether i feel ok just whether I'm within the labs she wasn't concerned when my TSH was right at the top of the range!
I have Hashimoto, I was tested for it 10 years ago and I think my antibodies was 86, I think. I asked for another tests a few years ago and the labtototy refused to give me one. Suggesting why do I neee another one if I have the condition already. It's interesting to read your letter that actively works with it to improve your health.
Having just spent four days in hospital with atrial fibrillation where the only known risk factor is a suppressed tsh because I am on t3 only I would say that you need to know the symptoms of atrial fibrillation to look out for, but that as long as you spot it and go to a dr it is unlikely to kill you. 1 million people in the uk have it and are not hyperthyroid but it is a big risk for stroke as the fluttery heart beat causes clots to form and can be pumped up to the brain. Your tsh is not completely suppressed, how do you feel on the dose you are currently on? Cd you tweak it slightly to see if you can get it just in range without feeling hypo? It's up to you to balance it, my endo said nothing about osteoporosis when supporting my prescription for t3 only so I really think that is a big GP myth that they like to use.
Thanks, I will look up signs of atrial fibrillation especially as my sister, who is also hypothyroid, has just been told she has an irregular heartbeat.
Listen everybody if your heart is too fast the the medicines either pulling in your blood you gotta take it slowly or your medicine is too low you have to increase it I'm not kidding I'v tested this out and I've been on a very high dosage of NDT a lot of people would freak out but I'm not kidding you it's long as you're taking enough selenium you can increase it so where you don't have any symptoms and I've had to go as high as 10 even 12 grains I know that's crazy but it's working for me I've been doing it for a while I'm just fine I have a good heart rate I have good blood pressure my weight is 135 pounds I look great I have energy my brain is not foggy anymore it's just that I still need to get my gut right because if I continue to cut out grains soy Dairy gluten and Beyond gluten I mean really have to watch your diet as soon as I eat something off this diet like some ice cream I have problems with absorbing my medicine
Can I just say outtar that my heart rate is and was before this incident 60 bpm. There was no indicator that I was going to have problems. AF tachycardia is very sudden, one minute I was fine, the next my hrt was fluttering around the 160-180 bpm. It did that for four days. Now it's back in sinus rhythm and is back at 55-60 bpm. The fluttering is the dangerous part combined with the speed. I don't know why it happened, but I just think it's important that if you r suppressing your tsh etc that you know what the signs are.
when my NDT is too low then I have a faster heart rate I am on a very high dosage of NDT because if I believe I have Candida and I have not had a diagnosed yet because it's very hard to test for and I'm on Medicaid and this doctor doesn't want to take the time to even try to test been to three doctors but I have all the symptoms and I believe my digestion is not good it has a lot to do with your gut as far as absorbing the NDT also I have to take it very slowly in the morning over three to four hours of taking it and I'm on a very high dosage which is actually about 10 grains and if I don't keep it up that high then my heart rate goes too fast that means that it's not getting to my thyroid so I have to take a lot in order to get to my thyroid and make sure it doesn't get in my blood because it can actually pull in your blood make your heart rate faster too so it's a very balancing trick to take this and I'm actually doing H2O2 therapy which is very healing it's not easy to do it's food grade 35% pharmaceutical hydrogen peroxide there's so many healing protocols on YouTube it's not even funny when you get your immune system right and your gut right a lot of things will really heal and Hippocrates stated that 99.9% all diseases are in the gut!!
Firstly, your GP only knows about TSH, that is their training and that is all they understand. I am not a DR and yes that may be a lot of NDT, I can only tolorate 1 grain and I have no thyriod. I think that you are roughly taking about 17 MCR of T3 but I am happy to be correct on this.
You can quote all the medical papers to your GP and Endo and they will still argue about your TSH. I had one endo say to me once. I have to say this about your TSH as I have a mortgage to pay and a family to feed. The powers to be love to take a person a license away for not towing the party line.
Yes if your heart is going too fast you may have problems in the future, and yes too much NDT or any thyroxin can take the calcium out of your body by speeding up your metoalism and you will pee out calcium. I see a Belgium Dr and he always advises Thyriod patients to take calcium but five hours after your dose.
May I suggest the following, measure your heart rate in the morning and at night when you watching the TV and you are still and quite do this a couple of times to see if you heart is racing.
If it is racing then you will have to cut down anyway, or you can try to just take 2 grains and see how you feel.
I didn't think it was a big dose - the different brands do vary i think. I shall do temp tests and check heartrate and see how I feel on just 2 grains. I also have to take iron as my ferritin is still low which makes difference too.
My GP did send my private blood test to an endo but the reply was no need to be seen or change anything (my TSH then was 2.61) so not much hope there. Mind you not everyone gets a better result from Endos!
Mine is at 0.3 on NDT she just wants all the numbers within her little tick boxes dont worry too much about it. I have just discovered I have gestational diabetes though so thats a new one to flamin deal with!! As long as you feel ok in yourself then thats the main thing. My mum has heart problems and osteoporosis and she is on Levo.
TSH is almost always irrelevant. What she should be looking at is your FT3 and FT4. If you are in-range on those, there is no risk. Challenge her to provide you research proof that low TSH (in the presence of in-range FT3 and FT4) causes osteoporosis or heart problems; I'll bet she can't. In fact, being euthyroid is highly helpful to lipid metabolism and heart health, as posted here previously:
If she won't test FT3 & FT4, that means she is not serious about treatment. Do you have the alternative of private testing? It is tempting to claim that she is ignorant, but I suspect this is nothing more than the old capitation game which health insurance systems play.
It's not health insurance games because I'm in the UK so it's NHS but they are constricted by guidelines as well as time since each appointment is only 10mins so for a GP to really go and find out more would mean a lot of extra work in their free time. So only ignorant because they've been trained that way, plus if they act against the guidelines they risk being struck off the medical register! So yes my only option is a private test.
Yes I found some too but they all talked about the link with HYPERthyroidism and I would have thought having a low TSH due to Hyperthyroidism could be quite different to having low TSH due to NDT medication....????
I don't think that matters, you are technically sub clinically hyper if your tsh is suppressed. The real question is whether it is the low tsh that causes a fib or do the t4 and t3 levels also need to be over range, and it is that which is the problem? The trouble is as modern medicine uses tsh as its signifier of thyroid function none of the research I've seen, apart from something clutter identified somewhere else, looks at t3 and t4 levels it all just uses tsh. That is very frustrating. Especially when trying to decide whether to drop my dose of t3 or put my a fib down to something else. I definitely don't want to go through what I have again, and am still anxious about my heart even though it isn't doing a fib at the moment.
Raucous, I don't think there's anything wrong with that TSH. Most people on here have suppressed TSH. It's a meaningless figure without the fT3 to go with it. For all know, you're still under-medicated.
If I were you I'd get new private bloods. BlueHorizon will do the fT3 alone, which I think is about £40, or you can get TSH, fT4, fT3, which is only a little more. This will give you more of a basis to make your decision, and also ammunition to argue with the doctor if you need it.
The worst thing you can do is let a GP reduce your dose on spurious grounds. It literally destroys lives!
Well luckily the GP can't reduce my dose because I'm self-medicating on the NDT but unfortunately the GP knows nothing about FT3 or FT4 and isn't interested so i also have no advice or support. But yes I'll probably get my FT3 & 4 done and at least the Gp will do the rest.
This video is so good! I showed it to a friend a few months ago, and she said she asked all these questions of her own doctor. So they palmed her off on the endocrinologist
Your Doctor needs to read up on the latest info on NDT. You run more risk of heart disease on Levo or Synthroid than on NDT. Your TSH is a little low but NDT is known for that. I suggest getting the book STTM-stop the thyroid maddness. It has a ton of information that will help you determine if your TSH is too low and what other tests you should get. TSH is not enough to determine how you are doing. You need T4,T3, RT3 and antibodies tests. ALL of these are important! If you T4 is high it could drive your TSH low, but that doesn't mean you feel well, if T4 is not being converted to T3 which is the active hormone your cells actually use, then you will still be hypo. If you have a high T4 you could have a high RT3-reverse T3 that will bind to the receptor sites where T3 is supposed to bind which will prevent T3 from being used by the Cells once again le=aging you hypo. So you see why it is important to have all of these tests. Antibodies present will tell you if you have Hashimoto's which is an autoimmune form of thyroiditis and you need to look at dietary changes like eliminating ALL wheat and maybe dairy from your diet, like the AIP diet to drive down inflammation that is causing the antibodies attacking your thyroid. There is a great Facebook group that is based on the book I mentioned and the admins are well versed to read your labs and advise on patient experience. It's called FTPO-thyroid topics, there are others under the same group for Hashimoto's, those with gut issues, lyme disease issues, total thyroidectomy, etc. google the group and be sure to put Facebook in the search. You will have to ask to join but once they see you are a real person and not a MLM scammer they will approve your request. Good Luck!
Thank Sylvrfox yes I have the book - which is really how I came to be self-medicating - I did the tests before I started NDT & had high RT3 & Tgb antibodies consequently I have also gone Gluten free - hoping I don't have to do dairy as I'm also veggie! I wish I could get the Doc to read up on latest but doesn't look likely.
have a look at the information by Ray Peat who suggests suppressed TSH is the way to go. My sons TSH has been totally supressed since starting on a product containing T3. Since doctors seem to only care about the numbers, not how you are feeling I think that you probably know best, but its hard to keep the prescription writers happy isn't it ?
I have osteoporosis, my grandmother had it, my mother didn't live long enough to develop it. I have been on NDT for the last 15 years, and my recent bone scan was almost identical to one done 20 years ago when I was first diagnosed.
The calcitonin in NDT protects against osteoporosis. Of course I didn't know that (or at least didn't know how much it protected) when I started, and I got all the gaff about how my bones would crumble. But the way I saw it was that I either risked a bone break, or I continued with no life. My heart is fine too. I have very slightly raised blood pressure, but that is more due to weight gain than anything else.
That's interesting Ruthi I've never had a bone scan but do suspect my Mum's osteoporosis could be in part due to decades on Levo. Do you know if your TSH has always been low on NDT and is that why they said your 'bones would crumble'?
Before you assume its the levo, or rather lack of NDT with its calcitonin, you should also know that there is a genetic link between hypothyroidism and osteoporosis. A faulty DI02 gene will lead to both poor conversion and congenital osteoporosis.
Unfortunately I don't have access to my records pre 2007 when I moved here. I am not even sure that they ever made it to the new surgery, because certainly there are some critical things missing from my summary. And of course in those days I self medicated on symptoms, and didn't ask about the test results. It was 0.01 in 2007, the first time they tested at the new surgery. I had been self medicating for about 6 years at that point.
Just to add my Endo said not to worry about the TSH being supressed so long as the ft4 & ft3 stay largely in range then there is no risk to heart or bones. Its also fine fir both hormones to be near or at the top of the range. He wrote this to my GP. Voice of reason! Am on a NDT.
Oh dear. I had this too, and my TSH wasnt as low as yours. The endo was having kittens, told my GP I should lower my levo dose. The GP was very concerned and said if I didn't I woukd have osteoporosis and heart attacks. I trawled the internet, and interrogated a retired GP friend to see if I could get any proof. The result was - nothing.
The question my GP couldn't answer is, how come now my TSH is lower than 1.0 I no longer have heart arrythmias and my cholesterol level has dropped quite dramatically.
It's amazing isn't it how wavylines Endo above can say one thing and your something completely different! I must say everything I've read suggests that the levels of FT4 & FT3 must make a difference but of course because they often aren't tested it is just the TSH that is being taken in to account.
And if you look at the research about the osteoporosis link and low TSH they are all looking at people who are Hyperthyroid with low TSH not people who are Hypothyroid and on treatment, so really the research that is needed is with both treated and untreated Hypothyroid patients with 1 group on Levo & 1 on NDT.
If you feel OK then DO NOT lower your meds. If the doctor insists change your doctor as the TSH is a useless measure if you are taking any form of thyroxine as you can become suppressed on anything even levothyroxine!
This nonsense over the TSH is not even logical! All the TSH is a signal to produce more or less thyroid hormones. It does nothing else! It is ft3 that is the active thyroid hormone and if that is kept in range you should not come to harm. There is no well conducted research out there that proves if keeping your thyroid hormones in range will cause diseases if your TSH is suppressed as a consequence. This what is called a hot political potato in the endo world. Sometimes I wonder if the medical profession has a functional brain.....cos it sure doesnt look like it from where Im sitting! Complete utter madness!!!! No wonder people self medicate!!
TSH also increases/decreases enzymes that control T4-T3 conversion so it does a little more.
One problem I see with TSH is that healthy people don't take large doses of thyroid hormones in one go like we do. Their hormones are secreted into the bloodstream steadily and hence FT3 is finely tuned within tight limits. Taking high doses of hormones (particularly T3), in one go, will understandably offset the system quickly as it goes into "panic/safety mode", so your TSH would never be the same as before when healthy (mine is a lot lower, well non-existent), even if FT4 and FT3 were identical. Therefore TSH will always be lower than when we were healthy since it's unnatural to load the system with large quantities over a short time period i.e. one/two doses. Sometimes this will mean TSH is suppressed just to feel healthy, but this doesn't mean hyperthyroidism as the FT4/3 levels are hugely different as others have pointed out.
Thanks Guthoo thats fascinating. I didnt know that TSH influences thyroid hormone conversion.... Do you have any links that I could have to read more about it please? Am intrigued. Does this mean the higher the TSH the more conversion takes place of thyroid hormones and vice versa with the lowering of TSH?
I always take my ndt in three doses throughout the day.....maybe thats why Ive found frequent smaller doses works better for me? My TSH is always supressed even though my thyroid hormones are in range for some reason that no one has ever been able to explain properly. So Ive come to the conclusion that much is still not known.
waveylines - will have a dig around for the info/links and will post them or send to you Some really interesting articles that have helped me try to understand what the hell's going on inside me!
I also take NDT split over three doses, partly as I find the T3 wears off quickly (around 5 hours) and also I don't feel good taking it all in one go due to adrenal problems in the past. I think the daily FT3 peak-to-trough is much less pronounced when multi-dosing but some people take it all in one go and feel great. Everyone's different. If we didn't have to avoid food/drink I'd try spreading NDT over even more doses to see how symptoms/blood panels look. But impossible when you factor supplements in grrrrrrr!
Totally agree Guthoo! I also have my morning dose as the biggest (about half my daily dose) lunch one a bit smaller & a really small dose at night as it helps me sleep!!!! I also find that it wears off after 5-6hrs too.....so lunchtime dose helps to stop me slumping in the afternoon. 😊
That's interesting waveylines & guthoo id like to try taking mine spread out but as you say it is really hard as I'm taking iron & other supplements. I thought NDT was supposed to be ok with food unlike Levo .....?
Ndt is supposed to be taken on an empty stomach. I do take my morning dose like that. My lunch time dose is more tricky and often I do take it with food. Havent noticed any difference to be honest. Its calcium and irin you are meant to keep 3-4hrs away from ndt. I therefore take my supplements at tea time!
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18 weeks pregnant on NDT with low T4 
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Update: GP Reducing Levo - TSH Low / T4 / T3 in range
