This question may sound silly but it is becoming a really annoying problem.
Every time I see a doctor, for whatever reason, s/he will order lots of labs. And those labs always include TSH, sometimes FT4, rarely FT3.
I dread getting the results back because my TSH has been suppressed (<0.01) ever since going on NDT. And of course doctors freak out and tell me I need to go back on levo asap. Recently, one doctor just handed me a prescription for levo 100 mcg. When I asked why this dose, I was told "that is usually what people take"...he did not even mention follow-up, just told me to switch to 100 mcg of levo daily.
I avoid doctors as much as possible, but of course we all need to see one from time to time...and I always have this dilemma: should I tell the doctor about my diagnosis (Hashimoto´s)? If I do, and s/he wants to check my thyroid levels, should I be honest and say I´m on NDT, or should I lie and say I´m on a synthetic combo? The latter would also explain my suppressed TSH, but in my experience doctors find it easier to accept that a patient takes synthetic T3 and T4 than NDT which most doctors where I live tend to dismiss as outdated, unregulated, unsafe, or downright dangerous. One doctor even told me that, if the pigs are reared on farms where they use pesticides and herbicides, I will end up ingesting those by taking NDT. There is no limit to the ignorance of doctors when it comes to unconventional treatment of thyroid disease.
If I don´t mention my diagnosis to the doctor, and s/he then ends up ticking the TSH box on the lab sheet, I dread his or her reaction once the results are back...because I know I will end up defending my choice to take something most doctors have never heard of.
But what is getting really annoying is that I feel I have to make excuses for taking a drug that makes me feel well...like I am being a difficult patient for not keeping most doctors happy by taking levo and having a TSH anywhere in range.
Has anyone else experienced this? How do you deal with it?
I am always 0.02 and like you avoid Drs like the plague. I take 125 of Levo, any lower and I’m zonked. They keep telling me about by heart but I counter that I have discussed it with my cardiologist who is quite happy!
I haven't yet had to do any explaining but I am gathering my reasoning together.
If ft4 and Ft3 levels are in range then I am not overmedicated.
Tsh is like a thermostat. It switches off when there is enough. Mine has switched off.
It is below normal because my broken system is wasteful with thyroid hormones now which means that I need higher in range levels of thyroid hormones than I maybe did previously.
The studies carried out on suppressed tsh consequences were done with hyper subjects. No measures were taken of their Ft3 and ft4 so we don't know if they were above range. I am not sure that the results are therefore applicable to hypo patients with suppressed tsh. For example the fragility of bones in one study was not due to decreased bone density it was due to the more rapid turnover of bone structure. I don't think this applies to hypo.
True, good arguments! Unfortunately, few doctors care about the free Ts. I have only had once doctor ever test my FT3 (the one who put me on NDT). Most doctors will only test the TSH, a few FT4, but they don´t know how to interpret the latter. My impression is they could not care less if the free Ts are low in range, as long as the TSH is in range.
I even find it useless to test my TSH nowadays as I know it will come back suppressed so basically a waste of money. I don't know what doctors expect from the same test result over and over again...!
Because you are on ndt, Ft3 should be checked every blood test. If you get ndt on the NHS they should be checking your levels. I'm on Combo therapy and my surgery does.
I´m not in the UK, I´m in Belgium where I get NDT prescribed by a doctor in Dr. Hertoghe´s practice. Most conventional doctors have no idea what NDT or synthetic T3 are, they just obsess about my suppressed TSH.
Whenever I say I never felt optimal on levothyroxine only, they tend to dismiss that argument by saying things like: "Well, you are the first patient I´ve met that it did not work for", like there must be something wrong with me...
I don't think there is any way for patients to surmount such a huge barrier of medical ignorance. The physicist Max Planck supposedly said (sometimes attributed to other scientists), "Science advances one funeral at a time."
The current treatment paradigm was never properly tested; it rests on a whole range of assumptions and, curiously enough, those assumptions make life much easier for clinicians, at the expense of patient wellbeing.
There is also the problem that professional reputations have been staked on this paradigm, so the professors who teach it and the clinicians who practise it cannot allow it to be challenged, because they would have to admit to having done great harm to generations of (mostly) women, with all the loss of face that entails, as well as all the malpractice suits.
We will have to wait for all the people currently training doctors, plus all the generations who practise their teachings to die out. At which point, one can only hope for more enlightened minds to take over - enlightenment in this most conservative profession being far from assured.
I have a suppressed TSH, which I rarely allow the NHS to test. However, I've needed tests just recently for an abdominal problem. Unbeknownst to me, the GP lobbed in a TSH and FT4 panel - this, after being told I'm on T3 monotherapy. 🙄 The FT4 came back way below range (a surprise - I thought my ravaged gland completely dead) but it was ignored anyway. The GP can't get hold of a consultant gastroenterologist in the Covid-focused NHS, so he's decided the 'abnormal' TSH must be to blame for everything that's wrong with me. I've responded frankly: "I do not want the NHS to have any input into my thyroid health. I am dealing with this privately." That shut him up!
Isn't it ironic....... half of us are trying like mad to get em to test what they don't want to......... and the other half are trying like mad to get em to not test what they insist on testing without being invited......It's like being trapped in some stupid screwed up parallel universe where black is white, and 'logical' is a rude word.........
So true...it´s like a nightmare. More and more often, it feels like I have to defend myself because of some undefined crime I did not commit...but I am found guilty even without evidence, so to speak...!
It should be simple: only the doctor prescribing NDT should order thyroid tests...other doctors need not worry about them as they are not involved. But they insist on interfering, trying to get me off the meds another doctor prescribed which, normally, would not be acceptable...I mean, if one doctor put me on a given drug for high blood pressure, and another doctor wanted me to switch to another drug for whatever reason, would it not be common courtesy to at least get in touch with the first prescribing doctor...?! When it comes to thyroid meds, especially NDT/T3, it´s like that rule no longer applies...conventional docs just tend to "steamroll" the doctors prescribing other meds than levothyroxine...for the good of the patient, they claim, while bypassing the prescribing physician...
I totally agree Chrissie, a total lack of professional courtesy.
And while we're on the subject. what happened to that principle that still seems to apply for every other area of treatment...... the one about informed consent in the balance of risk/benefit of a treatment in relation to quality of life. In cancer and gastroenterolgy investigations i have been gently guided through my options on a risk / benefit basis by lovelysupportive medical staff... and yet i have had to have a stand up shouting match with a Gp to be allowed to have a say in what level of risk i'm willing to undertake regarding my TSH.
Well, what prompted me to ask this question was the following: I saw my gynaecologist today. I had an appt back in March which was cancelled due to the lockdown. I was diagnosed with ovarian cysts a couple of years ago and was told that all tests came back normal so they were just "due to peri-menopause". They never caused any symptoms, BTW, but were merely discovered during a routine check-up. However, I was told to come back every 4-6 months for a check-up (pelvic ultrasound).
Today, the doctor told me she wanted a "complete hormone test"...which turned out to consist of TSH, FSH, LH, estradiol, and progesterone...a joke compared to the 40+ tests the Hertoghe doctors order every year. Anyway, I told her I saw my "alternative" doctor earlier this year so gave my gynaecologist a copy of the test results...all she cared about was my TSH (<0.01). She said that could have "caused me to go into early menopause as hyperthyroid women often do" (I´m 48 so not sure how "early" it would be...). And she must have told me a dozen times during my 50 mins appt levothyroxine is the only approved treatment for hypothyroidism...not true, as NDT is legal in Belgium...which just goes to prove how utterly ignorant they are.
She went on and on about how I will never get rid of the cysts if I don´t go off whatever it is that I´m on and that is preventing me from having a normal TSH and hence a normal "menopause"...I fail to see the connection, and I am not sure she would be able to explain it either. But it is so simple to just blame a suppressed TSH, isn´t it...?! Over the years, I have heard that this was responsible for 1. high blood pressure 2. autoimmune encephalitis and more recently 3. ovarian cysts...
It is incredibly frustrating. The only other suggestion I can make in addition to just telling them to bog off whenever they mention your thyroid treatment, is to refuse point blank your consent for them to test TSH. They cannot do this if you refuse to give permission. As I mentioned further up, mine was recently tested without my knowledge, but I won't let any doctor get away with that again - assuming I'm conscious at the time!
Thanks, that´s a brilliant suggestion indeed!!! I don´t know how it works in Belgium but assume it works the same way everywhere in Europe...that is, that the patient has to consent to being tested. I remember from the 1990s that people could not be HIV-tested against their will so would assume the same rules apply here...
A strange comparison, it might seem, but still the same rules should apply...I never really considered it before as I always felt it would be strange to refuse to have one´s TSH tested...it´s not like it´s some kind of infectuous disease, is it...?! And yet, there it is...I would rather have my free T3 and T4 tested than my TSH...!
I started on T3 with help from here some 2 years and it’s the first time in years I have had quality of life ! Free T ‘s in range !
For some reason when I tell any doctor(GP) I feel well, they can’t hear me🤫😢 Surely any one in their position would be pleased for you .
Fortunately I have recently had telephone appointment with Endocrinol gist
Who supports me and has just written a firm worded letter to GP practice to explain how the addition of T 3 will lower TSH but it’s the free T3 that matters most .
Just hope they read it and remember if I have the unfortunate need to consult again in the future.
I liked another members reply about Doctors singing from the same sheet "TSH, TSH,TSH." Mine means nothing and when it was 0.80 and in range according to my GP my T4 and T3 were very low in the range and I couldn't get out of bed because I felt so ill. It is now 0.38 and I feel really well. It is the T4 and T3 which gives a better idea of what your thyroid levels are. Also if you are taking T3 or NDT the TSH will be lower or suppressed.
It´s also strange that, as soon as the thyroid is concerned, doctors seem to feel it´s all right to interfere with treatment prescribed by another doctor...
I had a similar problem with the local Endos. They could not accept that my TSH was steadily declining. They had absolutely no idea how to medicate me and I was thrown from one specialist to the next, all completely useless. As I deteriorated towards a myxoedema coma I was left with no choice but to take it out of their hands and self medicate. I decided on T3 and have never looked back since then. In my case I now know that I probably have pituitary failure caused by a head injury 25 years ago. Trying to get my local Endos to understand that has been a complete nightmare. In the end I have had to go out of area to see a pituitary specialist to get some help.
My TSH is now zero and has been for years, T3 works for me but all my local Endos just freak out and cant cope .
Chrissie0771, stay on the dose of the meds that the "sensible" doctor prescribed for you. Manage your well being yourself by getting your own private blood tests (Start with a full thyroid panel). Then don't mention a word to it from any other doctor, they will never think of doing thyroid tests because most of them wouldn't know what to do with the results anyway.
You might want to talk to a pharmacist to check that any medications that other docs prescribe doesn't react with your chosen thyroid med - but other than that manage your own thyroid condition. Private blood tests may be a bit expensive to start with but you will get stabilized and well more quickly if you do it yourself and then you only need a small subset of tests once a year - and then, so long as you feel well you may only need to test once every two years (I have got to that stage).
The problem is that some doctors order thyroid tests along with other tests, and then they will freak out when they see my TSH...and start interfering with my treatment. I agree they are clueless so should not be involved. I have stopped mentioning my thyroid condition to doctors to stop them from interfering...the problem arises when a doctor includes a TSH test along with other tests. But then, they don´t know what to do with the result, and they don´t care about the actual thyroid hormones, only the TSH. I have been in that situation more times than I care to remember, and it never gets any easier. I end up defending the choice to take a drug that, unlike levo, actually enables me to live a normal life. That aspect seems to count very little to most doctors...they will say: "Oh, but surely you can have a normal life on levo as well?", because they are unable to understand that levo (or rather, my body´s inability to convert it to T3) is the very problem for me. But then again, I have seen several doctors over the years who did not know what T3 is, and did not know that T4 is supposed to convert to T3.
I have even stopped seeing doctors who would not let go, but kept on insisting I needed to go back on levo...with no regard for my quality of life and symptoms.
I take full responsibility for my suppressed TSH. If it ends up killing me in the end, so be it, but then no doctor can be blamed for it. And I will die happier than I would on levo...!
Regarding the last part of your post. I had to make a similar decision. If T3 kills me for "whatever" in 15 years time I would rather have 15 years of feeling well and then die rather than struggle in misery for 15 years (if I am lucky).
Update: I had 15 years of feeling well with suppressed TSH and high T3 and I am still here with no heart problems nor osteoporosis full disclosure I do have arthritis in my right knee but my arthropod told me you can have high bone density but low cartilage(sp). So, I guess I will now make the same decision for the next 15 years - although I guess I will not make it beyond 100 - but I doubt if it will be because if my suppressed TSH.
I forgot to answer one of your questions: My "arthropod" told me that my TSH was too low and would I consider lowering my dose. (Of course not, I don't want to feel ill again). I told him, "Ah, that is a very big topic, I would love to discuss it with you but I fear it would be a very long discussion, but, in short, NO, there is no way I am messing around with my perfect dose, I am well and I am not going back to a miserable life".
One doctor even told me that, if the pigs are reared on farms where they use pesticides and herbicides, I will end up ingesting those by taking NDT.
In the case of that doctor, the answer is fairly simple. Ask him if he eats pork chops or bacon, or knows anyone who does because they will be ingesting the same chemicals as someone taking NDT. And nobody claims that pork chops and bacon are poisonous due to pesticides and herbicides.
Also, grains and vegetables are treated with herbicides and pesticides too, but people still eat bread, cakes and vegetables.
Also, doctors use heart valves from pigs to repair human hearts.
So, your doctor was scaremongering and talking crap. Ignore him.
Totally agree!!! The problem is the ignorance among doctors...it´s just AMAZING.
According to most doctors, a patient diagnosed with hypothyroidism should feel well on 50-100 mcg of levo daily and that´s it and, if s/he fails to recover, the doctor will say whatever is causing the problems is not thyroid-related...
How many other diseases are there where doctors would totally ignore the patient´s symptoms, but just declare them "cured" based on subjective labs, and then dismiss them or refer them to psychiatrists for further treatment...?
On my father´s side of the family, there is cardiac disease. It´s probably because of modern medicine that my father and his brothers are alive today. But what amazes me is that, every time they did not respond adequately to a drug, doctors would immediately switch them to another drug, then ask them to come back for follow-up, ordering labs, not giving up until they actually felt well, and all side effects were gone...I have often wondered why that so rarely happens to thyroid patients...because most of us are women, and many/most cardiac patients are (still) men...?! I cannot say, but I have never met anyone who has been so easily dismissed as I have been as a female thyroid patient.
It´s like now that levothyroxine is widely available, patients should just stop complaining and be happy they are "cured"...and whatever remaining symptoms they have are for psychiatrists to deal with.
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