It’s been a really long time since I posted as things have been stable on the thyroid front. I’ve been contacted today by my GP because my TSH is ‘over surpressed’. Latest results are:
TSH 0.02 (0.35-4.94)
T4 12 (9-190)
T3 5.98 (2.43 -6.01)
I’m on 100mg levothyroxine and 20mg liothyronine and have been for 7 years. My GP wants to reduce the levothyroxine but I’m worried sick about that because 2 years ago they changed my dose by typo to 50mg levothyroxine. I didn’t notice because I am given prepared dosette trays by my pharmacy and the white tablet I take each morning looked the same. It was only when I started having multiple falls, bottomed out blood pressure and all my hair fell out that they realised the error which had put my TSH up to 7. To complicate matters I’m bipolar and on lithium which by itself can cause hypothyroidism although my problem presented before I went onto lithium. Endo and psychiatrist want my TSH to be less than 1 but that makes the GP uncomfortable especially since it’s lower than ever this time. I haven’t seen the endo for a few years now but don’t want the GP changing my dose unless it’s necessary.
Can anyone tell me anything about TSH suppression and when it’s ok or not ok in their experience? Do a supressed TSH with my T4 and T3 results mean I’m now hyper?
Thanks
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Lipbalmaddict01
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Refuse and tell him that blood tests were introduced alongside levothyroxine which is T4 alone.
Before that the doctors diagnosed/prescribed NDTs. NDTs = natural dessicated thyroid hormones made from animals' thyroid glands' were prescribed from 1892 onwards until
(in UK) it was withdrawn without notice and causing immense anxiety. NDT contains T4, T3, T2, T1 and calcitonin. There were also no blood tests invented (giving Big Pharma big profits).
There were no blood tests in 1892 and for a long time afterwards and the emphasis was always about 'how the patient felt' on a dose, the aim was relief of all clinical symptoms.
Your professionals who state that TSH should be around 1 or lower are correct.
GPs/doctors presume that if it is 1 or lower that we've become hyPERactive but that is not correct. I think the GPs get nervous in case they lose their licence.
Thanks Shaws, you always know your stuff. I may have to go back to the endo if they try anything. That accidental reduced dose was pretty catastrophic to my health and right now I feel great on all fronts. I don’t want them sending me backwards again!
Taking T3 will lower, even suppress, TSH, it's just what it does so any doctor who is prescribing T3 should know this.
TSH 0.02 (0.35-4.94)
T4 12 (9-190)
T3 5.98 (2.43 -6.01)
I think maybe you made a typo with the FT4 range, should it be 9-19?
If your GP reduces your Levo it will lower your FT4 result and it's already only 30% through range. If anything, with your FT3 very close to the top of the range, I would have thought that would be the one to reduce slightly.
However, if you feel well on your current dose then there doesn't appear to be any need to reduce anything, both FT4 and FT3 are within range.
Thanks SeasideSusie, I’ve copied the GPs message to me so it must be his typo if that’s not a normal number. I guess it’s just panicked me a bit when T3 and T4 are in range that he’s got this idea that I’m over medicated.
Thanks SlowDragon. Supplement wise at the moment I’m only on B12 injections. Vit D, folate and ferritin were all on the high side so I’ve been told not to supplement for now. Thanks for the advise on dosing before the test. I’m never that cautious so I’ll be sure to follow it to the letter. I don’t know why they keep trying interfere with the dose set by two specialists, I just assumed they must know something about today’s results that I’m not understanding.
Hmm, suppressed TSH. I am just contemplating a similar issue for myself
It is quite normal to have a very suppressed TSH on liothyronine. I suspect this is because the tablets give the body more T3 than it would naturally produce in one big hit, which causes the TSH to have a bit of a strop.
Some research suggests that a suppressed TSH can lead to higher than normal incidences of osteoporosis and atrial fibrillation, so we are therefore at an increased risk. Other research suggests that it is fT3 over range which increases these risks, not TSH. What neither mean is that you will definitely get one or both of those things if you have a suppressed TSH or over range fT3. If it did, then everyone on NDT would have these things - given that NDT usually causes a prolonged high peak serum fT3 and a suppressed TSH - and they certainly don't. In short, I would say that 0.02 isn't that suppressed, so personally, I would be OK with any potential risks associated with that if I felt well. But it is personal.
Different doctors and endocrinologists determine "overmedicated" differently. For some, it is a TSH below the range, end of. Some say - particularly regarding patients taking T3 - TSH would not matter but they would see "overmedicated" as an fT3 over range. Some doctors believe that if peak serum ft3 is over-range (e.g. 2-5 hours after your last T3 tablet) you are over medicated and therefore at increased risk of osteo and AFib. Others don't and would look at trough serum ft3 (approx 8-12 hours after your last tablet) and say that if that is over range, then you are at increased risk! So, it depends a) when you last took your T3 tablet on the day of your test and b) who you want to believe and c) depending on a and b, what you're comfortable with in terms of risk. I have a friend on lithium and levo and some other drugs too and I can see why she wouldn't want to change anything unnecessarily if she felt well.
All said with the caveat that I'm very inexpert. I am contemplating what TSH means to me personally, as I think I have to have a TSH similar to yours to feel well, so I guess I've been asking myself the same question. It was 0.2 at my last test and will likely be lower at the next one with me needing still more meds and on that basis, if I finally felt well (please god!) I'd be happy with 0.02! I think it is all very personal and ultimately, only you can decide, depending on how you feel.
Thanks Lotika. Now you’ve got me thinking! It’s highly likely I have atrial fibrillation, I expect to be diagnosed and medicated next week once I have a follow up with the cardiologist. The ECG trace was pretty obvious he was just waiting for the ultrasound results. Now he said hyperthyroidism could cause it but since I’m hypo and medicated he dismissed that idea. He didn’t ask about the TSH, just what medication I was taking. However, I’ve had previous heart surgery and pneumonia which can trigger it, plus my mum has it which increases the incidence by 25% so it could be completely unrelated to my TSH. Or maybe they’re going to seize on that to reduce my meds 😱! I’ve had bone density scans thanks to early menopause and a wise endocrinologist and they were fine.
It will be very interesting to hear what the cardiologist says on the supressed TSH front, especially as he was the one playing merry hell when my GP screwed up my thyroxine dose causing me to faint all over the place. What a tangled web!
Your absolutely right on the feeling well front, and it really doesn’t happen that often with all the drugs I have to shovel in. Informed consent exists so we that can choose quality of life for ourselves.
100 mcg L-T4 + 20 mcg L-T3 equates to 160 mcg L-T4 which is not really enough to suppress TSH. TSH can be very low because of high hormone levels supressing it or because the pituitary is underperforming. I notice that you were on NDT many years ago, if the dose was enough to suppress TSH it may have 'down-regulated' your thyroid axis, TSH no longer responds as it should, it stays lower than expected. If so this is history but means that TSH is not a good marker for your thyroid status.
T3 doesn't always suppress TSH, it depends on your combined T3 / T4 dose, just like T4 will suppress TSH if there is too much. If you are doing OK on your current dose I would stick with it. However, it is a good idea to challenge the dose now and again, just to make sure we are on the lowest effective dose. I would consider reducing your L-T4 to 75 mcg and see how you go. If it makes you worse then resume 100 mcg.
There is evidence that a TSH below e.g. 0.04 leads to increased risk of atrial fibrillation. (There is also evidence that a TSH above 4.0 is even worse for cardiac problems but this is never mentioned by doctors). My view is that if we get better with a low TSH and are able to live a normal life and exercise then it is the better option and probably safer than making us very ill just to reduce a small risk of AF. Sometimes we don't have the 100% healthy option, we have to choose which is the best option we can get, accept the risks and try to mitigate them with a healthy lifestyle.
Thanks jimh111, the atrial fibrillation point hadn’t occurred to me but it seems I have developed it (pending confirmation next week). I was at risk anyway but I guess the doctors might try and argue on reducing my meds instead. I do feel well other than the odd fluttery chest moment versus how utterly awful I felt when under medicated. As long as I take anticoagulants I’m willing to take my chances with afib rather than upset the apple cart with my thyroid and potentially a huge backslide with my bipolar too xx
I find it better to try reducing my medication myself before a doctor asks me, I then have the facts if I'm asked. I'm more than happy on a slightly lower dose if it works but I like to know if I can't and be prepared if I'm asked to reduce.
I wish it was a level playing field with medics…. as my endo said my TSH of 0.01 was ok as T3 and T4 in range and ‘that can happen when you are on combination treatment’. I feel lucky! I hope your GP is accepting of the evidence you provide 🤞
Studies which equate low TSH to poor health outcomes do not look at free T3 levels. Studies have shown that TSH does not affect bone health - it’s the thyroid hormone status that does. These studies usually exclude patients on treatment and therefore low or suppressed TSH that is linked to poor health outcomes is due to high thyroid hormones.
See this from Tania wrote from Thyroid patients Canada , ‘In the UNtreated state, a low TSH normally exists in the presence of high T4 and/or high T3. But this is not the case in thyroid therapy. The TSH-T3 relationship works very differently in people who are taking thyroid hormones. ‘
Your thyroid hormones are in range and you feel ok on this dose with no hyper symptoms.
This is ironic. I am about to talk to my endocrinologist about my low TSH (<.02). I, too, am on 100 mg of thyroxine but am only taking 10 mg of liothyronine. My Free T4 is 1.7 (0.9-1.8) and my T3 Total is 148 (54-163). I had radioactive iodine ablation about 15 years ago and have been on thyroid replacement ever since. They started me at 150 mg of thyroxine and lowered the dose gradually and 100 is as low as I want to go. I am willing to cut my morning Lio down to 5 mg but don't want to go any further. When I tried to reduce my meds previously I felt awful.
Because I insisted, the doctor finally ordered a Free T3 test for me and I am hoping it shows that I am not hyperthyroid. My mother had a very low TSH and her physician lowered her levothyroxine to the point where she was miserable. For some reason the medical world thinks that it's ok for us to feel crummy when we get older. For me, at 77, quality of life is much more important than quantity. I refuse to be in the same situation as my mother and have been trying to get someone to understand that I don't feel hyperthyroid.
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