OK, I have reached a point when I have given up trying to convince my family doctor and other so called specialists of the virtues of NDT. I will go off NDT for a limited period of time (stressing the word "limited") to allow my TSH to normalise.
My GP recently referred me to a cardiologist. She did this mainly because I have been on blood pressure medication for the past three years. Back in 2014, my BP was 170/120 and my resting heart rate +120 beats per minute. At the time, I was on extended sick leave for severe burnout syndrom and depression.
I was put on beta blockers (Tenormin Mitis, 50 mg daily) and a drug called Coversyl (10 mg daily). Since then, my resting pulse has been between 70-80 beats per minute and my BP around 120/80-140/90 (the latter often in the doctor's office, the former at home).
Anyway, when I recently went to see my GP , she claimed beta blockers and blood pressure meds can damage your heart if you take them long-term, and that she did not want to be responsible for that...which is why she referred me to a cardiologist.
My GP also finds it strange that although I have lost a lost of weight (ca 20 kilograms since going on NDT), I still require blood pressure medication. Both my parents have lowish blood pressure (my mother even to the point of feeling slightly dizzy from it at times), and my brother does not suffer from hypertension either (nor is any of them hypothyroid, BTW).
I saw the specialist yesterday, and realised my GP had sent her a copy of my most recent labs. The cardiologist said that she could not find any problems with my heart, the BP was 120/78 even though in a doctor's office, the EC looked completely normal, and she concluded my heart is perfectly healthy. Then, she looked at my labs and freaked out...she told me that a completely suppressed TSH (<0.01) can cause heart arrhythmia and eventually cause a heart attack. She wrote a prescription to have new labs done, and told me to go off any medication containing T3 immediately and back on T4 only until my TSH has normalised (she did not specify what "normalise" means as the lab's ranges are pretty broad: 0.2-4.5).
The cardiologist also said that patients suffering from Hashimoto's disease, such as myself, usually require lower doses of thyroid hormone than patients ending up hypothyroid as a result of radioactive treatment...
I simply don't have the energy any more to fight ignorant doctors, so I have decided to go off NDT long enough for my TSH to normalise. Back when I was on T4 only drugs, on 200 mcg daily, my TSH was low-normal (around 0.3-0.4). I remember feeling lousy on T4 doses keeping my TSH between 1 and 2. I figure as long as my TSH is in range, no matter where, it should be OK...at least it shoud be hard for doctors to say anything about it, unless there are some official guidelines recommending a TSH above 1...???
Does anyone have any idea how long it takes for a completely suppressed TSH to normalise when switching from NDT to T4 only? I realise it varies greatly from person to person, but just to give me an idea as I would hate to be off NDT longer than absolutely necessary...a week? Two weeks? Three weeks? Or even longer...?
If your TSH has been suppressed for a long time it may take months to rise on a reduced dose. It's not NDT, T3 or Levothyroxine per se which suppress TSH, it's the dose you take which suppresses it. Some people have suppressed TSH on as little as 75mcg Levothyroxine.
I see...that's the kind of answer I both expected and feared...I know it's far from ideal to move away from NDT back to T4 only and then back to NDT once again...I know that can confuse the body. The problem is that only my hormone (Hertoghe) doctor is fine with a suppressed TSH, whereas other doctors freak out at the sight of it...but I am slowly realising that maybe it will take months on T4 only to normalise my TSH (normalise = get within lab ranges)...during that time, I will most likely gain weight, feel lousy, and also develop rt3 dominance as I am a poor converter (at least I was when on T4 only for +10 years as my FT3 levels were not even midrange on 200 mcg of T4 daily...).
I also realise that, most likely, you cannot move from one thyroid drug to another and expect your body and subsequent labs to just adapt effortlessly...I know it does not work that way. I guess I have just been desperately hoping to get my TSH up enough to calm down my GP and cardiologist, so that they will leave me alone for a while...my cardiologist seemed convinced that it's only a matter of time before my suppressed TSH causes heart disease, and there is no way I am ever going to be able to convince her otherwise...
Are you doing this so that you will continue to get medication for your high blood pressure and fast heart rate? Has anyone threatened to take it away if you don't do what the doctors say with respect to your thyroid?
Are you supplying your own NDT? If you are, then you could just monitor yourself. But I'm confused about the connection with the hypertension and tachycardia.
Presumably your Free T3 is higher when you are on NDT compared to Levo. I'm assuming you are aware that low T3 is very bad for the heart. I wrote the following for someone yesterday :
If anyone ever mentions fractures as a result of having a below range TSH (which often happens in people taking T3) then pass on the info in this post - the relevant link is in the last post :
Ask your Cardiologist for evidence to show that suppressed TSH while FT4 and FT3 remain within range causes heart disease.
Changing medication doesn't seem much of a plan if you are doing it to please your doctor. If you believe the cardiologist then reduce your NDT dose until TSH is within range.
No, I don't believe my cardiologist at all! The problem is that I cannot see my hormone doctor every time I need to renew a prescription; first of all, she charges a fortune and, secondly, she has a waiting list of several months...so I need a GP to take care of small everyday complaints. However, that is getting increasingly difficult, as she is nervous about my suppressed TSH and wants it to normalise at all cost...it seems most if not all conventional doctors agree with her, so I really feel I have no choice but to self-medicate if I don't want to give up on NDT...and, given how miserable I felt on T4 only drugs for a decade, that is not likely to happen.
Does your GP not understand that you are under the care of an endocrinologist who is more experienced than she is re thyroid and is not concerned about suppressed TSH?
No, not at all...she keeps telling me how dangerous my suppressed TSH is...She does not seem interested in my well-being or symptom relief, just in my TSH
Well you shouldn't be treated by 3 different doctors for the same illness. I would stick with the Hertoghe doctor. Can't the Hertoghe doctor write to your GP saying what dose NDT you should be prescribed?
No doctors except the Hertoghe doctors prescribe NDT. They won't even hear of it...I am not treated by three different doctors for the same illness, but was referred to the cardiologist because my GP was worried about the long-term effect my BP medication would have on me...and since the cardiologist got a copy of my latest lab results, she could see my TSH was suppressed and this caused her to freak out and start talking about possible future heart conditions caused by hyperthyroidism (because to both GP and cardiologist I am hyperthyroid because of my suppressed TSH, although both free Ts are well in range).
Doctors in Belgium are generally not open-minded when it comes to the treatment of thyroid disorders. You take T4 until your TSH ends up anywhere in the normal range, and that's it. Most doctors won't even test FT4 and FT3 levels as they are deemed unimportant once your TSH is normal...
Low iron, which is common in hypothyroidism, may cause tachycardia and raise blood pressure. Optimising all your iron-related measures and your thyroid numbers can help a lot.
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Improving kidney function may lower high blood pressure (in some cases) - it would be worth researching.
Thanks a lot, HumanBean, for this very interesting article!
I have in fact been diagnosed with low iron and ferritin levels (+ low TIBC), and took prescription drug Losferron for years. It did not do much for me, however, so last year, when my doctor renewed my prescription, I decided not to to take it anymore. Since then, I have tried to find a great supplement...there are so many that it easily gets confusing. Any advice on this would be most welcome!
I have been on Thyroid-S for the past year and a half and doing really well on it, it's just that my FT3 levels stay midrange and my FT4 levels are at the bottom of range. If I try to raise my dose, even by as little as 1/4 grain, my FT3 levels end up above range, but my FT4 levels hardly change at all. My TSH has been suppressed (<0.01) all along. I have read in many forums, including this one, that FT4 levels are supposed to be lowish, even below range, when on NDT or synthetic T3, that the TSH is irrelevant, but that FT3 levels should ideally be in the upper quarter of range. However, I have never been able to figure out if that applies to FT3 levels measured directly after taking NDT, or 12, or even 24 hours after taking NDT...
Thanks again for this very interesting and enlightening post!
Some get help from lactoferrin. Some need iron supplements with some don't. Some it doesn't work at all.
Lactoferrin is supposed to help trapping more iron , but for some it can increase hepcidin as body tries to protect itself from excess iron during illnesses.
I was also going to suggest reducing your NDT to get your TSH in range.
I cannot take any amount of T3 and maintain a normal TSH. Simply impossible.
Before going on NDT, I took Thyroplex women (each capsules containing the equivalent of 1/4 grain NDT so ca 2.25 mcg T3), along with T4, and my TSH ended up below range. So it seems almost impossible to suppress my TSH with T4 only, and just as impossible to keep it in range even with tiny amounts of T3...so, to me, it seems to be an "all or nothing" approach where I either go back on T4 only, and wait for my TSH to normalise, or stay on NDT and forget about ever normalising it...
However, one thing is seriously beginning to bother me: I have had a suppressed TSH for years. Before going on NDT, I had a GP who wanted Hashimoto's patients to have a TSH between 0.05 and 0.1 (ref 0.2-4.5). He claimed that helped keep antibody levels down, and he was right; mine were drastically reduced when my TSH ended up below 1. However, he claimed that a TSH below 0.05 was "dangerous", whereas a TSH between 0.05 and 0.1 was safe...and my current GP, along with various specialists I've seen in the past two years, keeps telling me that a TSH below range is dangerous for the heart, the kidneys and God knows what else. It seems to be a miracle I'm still very much alive...!
I don't know if there are any guidelines stating what to consider a safe and an unsafe TSH respectively, given that not even doctors seem to agree on this issue...? I have read that thyroid cancer patients should have a suppressed TSH to reduce the risk of recurrence, but I have no idea what this means...below 0.1 (or whatever the lower normal range for a given lab?), or below 0.05 or even below 0.01...???
On a more general note, it would be interesting to know how many here have had optimal treatment results (=complete or more or less complete symptom relief) on NDT or synthetic T3 and T4 (or any combination thereof, as long as it contains some T3), while maintaining a so called normal (= in lab's range) TSH? I have never been able to keep my TSH above 0.2 (the lower normal limit for labs in Belgium) when on any kind of drug or supplement containing T3, not even Thyroplex or Nutrimeds which both contain approximately 2.25 mcg of 1/4 of NDT per capsule...as soon as I take any T3, no matter how tiny the amount, my TSH drops below normal. But I have realised that I need T3 to feel truly well and rid myself of all symptoms. Since I have lived for over 10 years with a suppressed TSH, and feel very much alive and well most of the time, that is not something I worry about. However, just out of curiosity, it would be interesting to know if anyone has managed to maintain a so called "normal" TSH (anywhere between 0.2 and 4.5 or 5 which seems to be the golden standard, at least in mainland Europe) on any drug containing T3...?
What I like about Thyroid-S is the fact that it feels like there is a smooth delivery of hormones throughout the day, and not constant ups and downs like I had with for instance Erfa.
I am fortunate in the sense that I am seeing a hormone doctor prescribing NDT and other natural hormones, but that does not help much if the thyroid drugs in question don't work optimally. I have had all sorts of problems with Armour (did not go on it until after unappreciated 2009 reformulation). I have not had much luck with Erfa either (STTM claims it has changed, manufacturer claims all they did was move production site from Belgium to Spain; I wouldn't know since I did not switch to Erfa until after it was moved). Anyway, neither Erfa nor Armour worked optimally for me, so I decided to try Thai NDT instead. Readily available without a prescription and at a fraction of the cost of prescription NDT...all Thai brands have their fans, but I really like Thyroid-S despite all the fillers. There seems to be a smooth delivery of hormones throughout the day, without ups and downs; I just take my pills and forget about them.
I refuse to believe that you could feel this good without actually doing pretty good...yet, most doctors behave like I was dying. If the only function of the TSH is to make the thyroid gland produce hormones, and my thyroid gland is unable to do that, I fail to see why the TSH reading should be considered such an important hormone...however, except the Hertoghe doctor I've been seeing for the past few years, no doctor has ever paid any attention to my actual thyroid hormone levels (FT3 and FT4). Most of them have claimed it would be a waste of time and money to have them tested. One said he could agree to test my FT4 levels, but that FT3 levels would be a complete waste of time and money as, and I quote: "T3 is only a byproduct of T4 and has no role on its own"...what do you do when confronted with doctors like that, over and over again...? And I am not talking about ignorant small-town doctors either. I am talking about university professors and endocrinologists...all claiming the TSH is all you need to measure, and that the other thyroid hormones are basically unimportant.
bravo anna i enjoyed your posts! you have a very good inside of your treatment and i understand, that you feel a bit off kilter when your heart and blood-pressure is playing havoc. your cardiologist was very happy with your heart until she seen your TSH results what a crap. obviously something is not right if you feel your body is telling you something [but what] do you have antibodies? and get flare ups? also, get an iron panel done as well as all the B's. if they are all low you might have anemia and the sister group in here can help you with that? Pernicious Anaemia Society, you can find the link in the upper header, next to your name. i wish you all the very best and try not to change back to t4 only [if possible]
xx
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Yes, it's truly depressing when doctors find you healthy until they see your TSH...
I do have Hashimoto's disease, but notice that antibody levels go down and remain almost in range when my TSH is suppressed. With a normal TSH, my anti-TPO levels immediately rise. Another reason for me to keep my TSH suppressed...
Thanks for the great advice, I will make sure I have those tests done!
I know this post is old but I have done exactly what you are asking. I was on NP thyroid for 18 months before immediately changing to Levo (T4 only). I felt so bad at times that I took a 5 mcg dose of Cytomel randomly to alleviate symptoms. I felt like death for a solid 3 to 5 days... And then slowly started to feel better. I'd say it was 8 weeks before my TSH normalized.
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Has anyone had to go off NDT and back on T4 only...?
How long after quitting NDT would I be back to baseline?
blood results after going back on T4 only treatment. And how I feel.
Back on T4/T3 combo after T3 only
Suppressed T4 and TSH on NDT
