I have had a suppressed TSH for years; first, I had a GP more openminded than most who believed that patients with Hashimoto's needed a suppressed TSH in order to keep antibodies under control. However, he only prescribed T4 to achieve that (in my case, that meant 200 mcg daily). I never felt optimal on that, but much better than on the dosage prescribed by most conventional GPs (100-125 mcg daily).
I then went to see a Hertoghe doctor who put me on NDT, and I have remained on it since. It's been a bumpy road, with various reformulations, and I am now on Thai NDT and very happy with it.
But I never know what to do when other doctors whom I consult for non-thyroid-related issues ask for thyroid tests and then freak out about my TSH (<0.01). I have to admit I don't even want to tell them I take NDT, because I know most doctors hate it, so I simply lie and tell them I take synthetic T3 +T4 drug Novothyral (available as a POM where I live). They don't like it, and always tell me to go back on T4 only, but at least the mention of Novothyral does not make them freak out like I imagine the mention of NDT would...
So, my question to others with a suppressed TSH is: what do you tell doctors who freak out about it? There was a time when I would go on and off NDT and back on T4 temporarily in order to allow my TSH to normalise, but I no longer do that as it's too much of a hassle...
The Nurse Practioner, checked with one of the GPs, and both were happy with my suppressed TSH because both FT4 and FT3 were showing mid-range. They think I take Levo only but I actually add T3 to it.
Today I saw a different GP for a different reason, who turned the consultation into discussing my TSH and my tachycardia and is chasing up an appointment with a cardiologist.
I told her my TSH has been suppressed for 20 years, it's not a thyroid hormone, my thyroid hormones are only mid-range. She's banging on about suppressed TSH, heart problems, we go by TSH, we can't overmedicate you and that she would have reduced my dose of Levo. I told her I wouldn't have reduced it. Round and round we went, she wouldn't back down and I told her I'd gone along with an endo years ago to get my TSH in range and he turned me into a zombie because my FT4 plummeted, I had to give up work and be looked after for 2 years and I said no way was I repeating that. She just said the cardiologist won't like the suppressed TSH and would want it in range.
Well, I now have to prepare for that!!
But no way am I reducing my doses, I'm too old to be treated like a naughty child, I refuse to allow them to ruin what life I have left even if it means they stop my Levo altogether, I shall source it myself and continue as I am.
What really, really bugs me, is that one doctor is fine with it and another one kicks up a fuss.
I have had doctors tell me over the years that a suppressed TSH will cause hypertension (not true, as far as I know, as it seems hyperthyroidism actually lowers your BP), heart attacks, mineral depletion, bone loss and God knows what else...I could probably go on forever. But knowing that there are others out there like me, fighting ignorant doctors, makes me feel a little more comfortable about it...
Hi SeasideSusie would you mind PM ing me which T3 you use and where you buy it please? I’m baffled by the choice and apparent unavailability of some at times. Am thinking of giving it a try, but can’t decide which one. Many thanks.
I finally saw a cardiologist in December after having Afib for 5 years and told her about the Drs fiddling with my Levo dose because of a suppressed TSH 0.01. She advised there was no need at all for them to do that. You might be as lucky as me.
Di
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I'm very happy for you! Open-minded doctors like that are rare so it's great that you found one.
Whatever they say I won't change my doses. My TSH just won't come into range unless I don't take thyroid meds so rather than be bed bound and slowly die with no-one to look after me as I live on my own, I'll take my chance with a suppressed TSH.
I’ve also frequently been threatened with heart trouble, osteoporosis, liver and kidney damage etc.
I just try to avoid doctors who are unfamiliar with my suppressed tsh. Failing that I try to ignore them.
It makes me absolutely determined to stay well and avoid as many medical professionals as possible. Probably I’ll live longer perhaps? Determined to prove them wrong!
I could not agree more! I try to avoid GPs as much as possible but, since I only see my hormone specialist once a year, I sometimes have to see other doctors as well...something I try to minimise as much as possible, just like you.
Most doctors seem to think we are hyperthyroid, when in fact your free Ts are well in range. The only go by the TSH (most doctors I've seen don't even request more tests than that)...
The last doctor I saw freaked out because my TSH was 0.45! And wanted me to lower my dose. I said no. He spent a lot of time trying to mansplain to me how 'dangerous' a low TSH was. But, every time he opened his mouth, I just said 'no'. Finally, he got tired of that, and gave up. Not saying I recommend that approach, but it worked for me.
I have suppressed TSH and am still symptomatic, although improving now that I am adding in some T3, not told them yet. My T4 and T3 have never been more than under half way in range, so I think I am a poor converter.
When they go on about suppressed TSH I tell them it isn't a thyroid hormone but a pituitary hormone and that T3 is what the body needs. I also add that I want a life rather than an existence. So now I have an appointment to see an endo but the apt letter said even if they thought I needed T3 they won't prescribe it!!! Wonder how our PM would feel if they told her she can't have her insulin?!!!!!!!!!!! Needless to say I now have an apt with my MP to put in a formal complaint about NHS
I wonder how many GPs/Endos are under the illusion they are treating their thyroid pts when so many of us are treating ourselves secretly as a result of their unsuccessful treatment plans. It is crazy and sad that, in this day and age of so called civilized, sophisicated medicine and healthcare, they are still in the dark ages of proper knowledge of thyroid function. How can it be that there is state of the art brain surgery but so limited care, knowledge and resources on another crucial function of the body, the thyroid? How frustrating!
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I sometimes wonder if the fact that most thyroid sufferers are women is the reason why doctors don't seem to care, and easily dismiss us when we complain that their prescribed treatment is not making us better...would they pay more attention if most thyroid patients were men?
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Too right! Our lingering symptoms are too often told it's our hormones because either we've had a baby, stress, premenopause, menopause blah blah!!! Everything to avoid lack of thyroid care which may cost money or show their lack of knowledge.
Can I ask how long it would take your TSH to normalise? I ended up overmedicated last year and my TSH was suppressed (FT4 over range). I am now on a lower dose and my frees are in range but my TSH was still suppressed. I am a bit worried about going for blood tests in case the doctor tries to lower my dose even further.
I did see one doctor who told me he though it was a good idea to tell his hypo patients who still felt ill that they should just get used to 'the new you'. In other words 'ill is the new well'.
Back in the good (or rather bad) old days when I used to go off meds containing T3 long enough for my TSH to normalise, I went back to T4 only drugs about two weeks before going to the lab. I am not sure it really takes that long for the TSH to return to normal, but I just did not want to risk it being too low.
I was just going to write a post to ask about this. I got a call from my GP surgery yesterday, telling me I have to make an appointment for a thyroid blood test as I haven't been in for over a year since I was prescribed Levothyroxine. I have been self-treating with Thai NDT for a while now, and am feeling much better. I do my own private blood tests. My TSH is well and truly suppressed, < 0.05, but T3 and T4 are in range. I can already foresee what will happen if I go in for the blood test: Blood taken, a few days later a phone call from the surgery telling me to make an urgent appointment because my TSH is dangerously out of range. Then what do I tell the GP? Then again, what can they do? They can't withdraw the Levo, as I don't even order the prescriptions anymore. I do wonder how they can call me in for a blood test, but haven't noticed that I haven't ordered any medication for 8 months!
My dilemma, do I even bother wasting everyone's time by going for the blood test? Can they make me? Is it better to take the test, then at least let the doctor know what I am taking, even if he doesn't agree, and get it on my medical record?
They have to have your informed consent for any tests. So you don't have to agree to have them.
As you are using Thai NDT and doing private blood tests, feeling better, then you could do one of a couple of things.
1) Don't bother with the blood test, and when questioned say you are being treated privately for your hypothyroidism and having regular blood tests. You're not lying. If your GP doesn't like it then that's not a problem, you're not asking for a prescription for Levo so he can't take that away. Your diagnosis is on your records. Are you likely to be asked to find another surgery because you are self treating? If not then no problem.
2) Come clean and tell them you are self treating with "Armour Thyroid" (use that brand name only, they may have heard it, anything else would probably freak them out). Tell them that you are also testing privately to ensure that your actual thyroid hormones are within range. Are they likely to ask you to find another surgery? If so then you have to think this one through carefully.
But if your improvement on NDT isn't sustained and it all goes t**s up, what then? Something else to think about.
I've no idea what would happen if I came clean. I have a new GP as my previous one left since my diagnosis, and I've never been to see the new one. Who knows, maybe he'll be really supportive, open-minded and thyroid enlightened...yeah, right!
I don't know about UK laws, but in Belgium it's not possible to force someone to have blood tests. The only thing that might happen is that the doctor refuses to renew your prescription without recent lab results, but if you are self-medicating that is not a problem.
I don't think it's possible to have a so called normal TSH on NDT or T3...as little as 15 mg or 1/2 of NDT is enough for my TSH to end up <0.
I usually tend to tell them that, as there is enough T3 in my bloodstream, my pituitary gland realises that there is no need to stimulate the thyroid into producing thyroid hormones for me... hence no TSH! Simples!!!
This is the conversation I had with the Nurse Practioner (again I was seeing him about something else, they all bring up thyroid results, so flipping annoying when I'm only allowed to discuss one thing per appointment but it's alright for them to bring up something you didn't go to see them about!).
I went through the whole pituitary looks for thyroid hormone, if it doesn't detect any then it sends the signal TSH, etc., if it does then it will be low, etc. He said he'd enjoyed the conversation and how nice to talk with someone sensible who understands how it works (!). He agreed with me but had to get a doctor's opinion/agreement before he dropped the subject of my dose of Levo. He came back and said it's fine, and I replied that's good because you know I wouldn't have reduced my dose. All done very pleasantly, with smiles.
Not so the GP. TSH rules. We only go by TSH. Don't care if your free Ts are only mid range, they don't count, only TSH 😡
It's like talking to a bunch of automatons isn't it? But I'll be damned if I'm going to put myself back into that place I was in on only bloody levothyroxine!!!😡
It totally bugs me. I try to be assertive and politely stand my ground but they have such a god like complex. Seeing one GP about something else and trying to get to the bottom of a potentially serious problem that was being dismissed I was told I sounded angry and did I go looking for a fight 🙄
I'm totally done with being fobbed off, dismissed, not taken seriously, told to reduce my meds to the point of making myself ill.
My only problem is that I have to be careful not to get chucked off the surgery's books, I live in a rural area and the next surgery is 10 miles away with poor public transport and none of my own.
Sounds like my neck of Wales too... I live in a village that doesn't even get a bus service, so a car is essential and my current surgery is 5 miles away with the next one being 13 miles... I guess you'll just have to find one GP in the practice (always assuming there are more than just one or two) who is at least willing to pay attention to your knowledge (mine admitted I probably knew more about it than she did) and stick with just seeing them. There are a couple of specimens at my practice I won't even entertain the thought of seeing... ever!!!
The Nurse Practioner is fine with it, and whichever doctor he discussed it with (but I don't know which one it was). It's just this GP I saw this week. I try to avoid seeing her because I know what will happen, but on this occasion she was the best choice for what I did go for. She's doing a battery of blood tests and said she would do TFT as well. When I said that they were done in November she replied "But that was SIX MONTHS ago". Funny how I managed to go 3 years previously, they don't seem to recall you any more at my surgery.
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