Hi, I'm new to this forum. I am a 57 year old woman. Who has recently been diagnosed with subclinical hypothyroidism. TSH 7.44 m/u/L [0.38 - 5.33] Free T4 7.44 pmol/L [8.0 - 18.0]
My doctor prescribed me 100mcg of levothyroxine. I have been taking it for 3 months. I have just had follow up blood tests and my results are
TSH 0.02 m/u/l [0.38 - 5.33]
Free T4 18.5 pmol/L [8.0 - 18.0]
A text I received from my doctor says I have medically suppressed TSH. Any advice would be greatly received, my doctor says he will ring me tomorrow. Thankyou
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Dearhound
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Did you start on that all in one go? Or go up in stages from 25/50 to 75 etc?
I’d suggest asking the GP if it’s OK to test again in 12 weeks. Stick with it (depending on your symptoms).
Lots of posts here about supressed TSH, as a patient I don’t pay any attention. As long as FT4 isn’t over range then I’m happy.
Did they test your FT3? Ask for that next time. My GP has just started to get FT3 via the lab at the local hospital. It’s very useful to know how well your FT4 converts to FT3.
Hi thanks for replying, the doctor started me on the 100mcg dose. I was feeling better, apart from horrific nightmares. Alot more energy though. However, recently my heart has been beating very fast and I'm quite agitated, unable to sleep. This concerns me slightly due to the fact I have a heart valve problem.
So you just might be a little overmedicated. If your GP wants to lower your meds by say 25mcg, ask if you can do 100 one day and 75 the next for a while. You may have overreached your sweet spot and we're all different.
For what it's worth, I felt exactly the same way when over medicated - unable to sleep, jittery, agitated. That should get better when you reduce the dose, but it takes a while as T4 medications have a long half life (took me 2 weeks at least to feel slightly better and 4 weeks to fully feel better).
Very unusual to start a patient on 100mcg levothyroxine, especially for those with heart problems?! The consensus is to start at 25 mcg and then titrate up by 25 mcg every 6-8 weeks. If you have a very high dose right from the beginning, your body can react to that strongly and might think it has too much, even though that might not be the case?
Did your GP give you a reason why he started you on 100mcg right away given your heart history?
That's interesting, and good in a way to take into account your weight. Well at least it got you quickly where you probably need to be, so that is a positive thing. Like others have suggested, maybe lower your levothyroxine a small bit (75 and 100mcg) and then see how that will influence your readings. I suggest you test the T3 privately, if the GP will not do that, otherwise you will not know how well you convert and if your T3 is low, as this may still give you symptoms and will have implications for your cholesterol as well (lower T3, higher cholesterol).
I would also check your iron, folate, Vit B12 and Vitamin D, as if these are not optimal, you cannot make the most of your thyroxine and they help with the conversion from T4 to the active T3.
Yess, sorry, should have included that. Sometimes the GPs test TSH and T4 as well but not T3, but the private testing usually always include TSH, T4 and T3.
I'm always trying to remember that someone here might be new to all this and so we need to give all the detail we can. It can be hard though, when we know it so well.
There is another autoimmune marker for Hypothyroid/Hashimto’s too: TgAb, rarely tested in NHS so might need a private blood test. I had TgAb only not TPO which I just discovered from Endo.accounts for 5% of Hashi.
It's quite common to start people on 100 mcg but you were only mildly hypothyroid so 50 mcg might have been better. I would ask to go down to 50 and see how you do then. Some people need a suppressed TSH but most don't and TSH can fail to recover if it is suppressed for a long time - this leads to worse hypothyroid problems. So, I yhink it's best to lower your dose.
With respect to your knowledge, which is excellent and wide ranging, I'd argue reduction to 50mcg from 100 is too much. To me a reduction to 75mcg would be a more sensible step so as not to go backwards?
I would even say as the FT4 is only slightly over (and results can fluctuate), I would try 75mcg and 100mcg on alternate days first and see. 100mcg is not that high a dose anyway so even 25mcg could be too much of a reduction, especially since we have no T3 information.
She may well need 75 mcg and perhaps more in time if her thyroid is on the way out. My concern is that if TSH is suppressed for some time the 'axis' can become down regulated, TSH no longer responds as it should. This appears to long term effects in terms of reducing local T4 to T3 conversion. Certainly the people I see on this forum with low normal TSH, fT3, fT4 (all three) do very badly with substantial symptoms that are difficult to resolve. And of course if your TSH stays low it confuses doctors with problems getting adequate treatment. So, in the short term it's wise to restore your TSH.I was also looking at the arithmetic. She had an fT4 of 7.44, let's call it 7.5. This went up to 18.5 with 100 mcg levothyroxine, an increase of 11.0. Perhaps 50 mcg might give an increase of 5.5 bringing fT4 to 13.0 which is mid-interval (8.0 - 18.0). Of course this is bad maths, things are much more complicated but it gives a good stab at an adjusted dose.
Personally I would ask to try 75 mcg. I would skip two or three days levo and then resume on 50 mcg for a few weeks. If I developed noticeable hypothyroid signs and symptoms I would then take the full 75 mcg. This gives some flexibility as it's much easier to take less than prescribed as opposed to getting a higher dose prescription - you can safely find your preferred dose without 'interference' from the doctor.
I like your last paragraph suggestion. But I'd be worried that a big drop of 50mcg in one go might put her body into a shocked situation. I would struggle with that. But we are all different of course. My TSH is reluctant to drop low so I don't have that issue.
My concern is that if TSH is suppressed for some time the 'axis' can become down regulated, TSH no longer responds as it should. This appears to long term effects in terms of reducing local T4 to T3 conversion. Certainly the people I see on this forum with low normal TSH, fT3, fT4 (all three) do very badly with substantial symptoms that are difficult to resolve.
jimh111 When you write this - are you referring to t4 mono patients only, or would you say the same for t4/t3 combo?
Both. There is evidence that TSH stimulates type-2 deiodinase that converts T4 to T3 locally ibshypo.com/index.php/tsh-r... . This T3 finds its way to the blood, it is the major source of serum T3. The problem is that if you restore serum fT3 with tablets it will push TSH even lower futher reducing D2 activity. As a consequence local T3 levels in some tissues, such as the brain, will still be low. Consequently you need supra-physiological doses of T3 to restore normal e.g. brain T3 levels. This is undesirable as other tissues will have too much T3.
This happened to me because I needed high doses of thyroid hormone for more than a decade (very long story).
Thus, if possible we should avoid supressing TSH, you don't want to get into the situation I'm in if you can avoid it. Even worse doctors don't recognise this condition so they are not much help.
As a general principle I think we should be given levothyroxine with a little bit of liothyronine or NDT. Usually TSH will be around 1.0 or 2.0. However, sometimes the pituitary isn't working properly, it is falling towards zero with even moderate fT3, fT4. These cases are very difficult and I don't think we know enough to have a general rule.
They should test once to show if you are autoimmune type. Ask if they will do folate, ferritin, b12 and vit d as these are often affected. Need good levels, many supplement these.
Cholesterol might be high and sugar levels a bit high too.
Amazed you got put on 100 mg from the start, 50 is more usual.
It seems your levothyroxine dose might be too high, causing suppressed TSH. Your doctor will likely adjust your dosage to balance your levels. When speaking to your doctor, ask about lowering the dose, follow-up testing, and managing any symptoms you might have. Stay proactive, and you’re on the right track!
I have had ferritin, B12 and folate tested, all on low side, so I am supplementing. Cholesterol is on the high side as you said. Think I will ask to lower dosage and see how I go.
If your cholesterol is high it probably means that your FT3 is too low. Reducing levo (T4) slightly might improve your conversion of T4 to T3, so your FT3 might rise slightly. Worth a try.
By the way, when you were diagnosed you were not technically subclinical because your FT4 was below range. Did you have symptoms? What time of day was the blood draw for this test? Your TSH is not very high considering your below-range TSH. This could either mean that your pituitary is a bit sluggish, or that your blood was taken around midday, when the TSH is at its lowest. Either way, don't ever let your doctor reduce your dose based on the TSH reading alone. It is an unreliable indicator of thyroid status.
You need both TPO and TG thyroid antibodies tested and vitamin D
Are you supplementing vitamin D
was this test early morning and last dose Levo 24 hours before test
Which brand of Levo are you currently taking
Improving low vitamin levels will improve how you use Levo
Suggest you either stay on 100mcg only reduce dose very slightly
Eg 75mcg twice week and 100mcg 5 days
Retest including thyroid antibodies and vitamins in another 8 weeks
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
VERY important to test TSH, Ft4 and Ft3 together
What is reason for your hypothyroidism
Autoimmune?
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
hi Dearhound, you’ve probably spotted this already but you’ve typed both TSH & Free T4 had an identical value - 7.44 ? That’s one hell of a coincidence or a typo?
I follow Modern Thyroid Clinic here in the States and McCall McPherson NP would say 100% you are over medicated. She'd base that on your over range FT4 and the hyperthyroid level TSH. Her ideal ranges are 0.9 -1.2 for FT3 and 1-2 for TSH.
Also without ranges for the particular lab, and also units of measure for the numbers above, this won’t be possible to apply to other peoples results and will be misleading.
But we are all v different when it comes to hypothyroidism - some are fine with T4 mid range, others, like me, need T4 @ the top of the range to be well. My TSH has been suppressed for years+no doubt 40+ yrs on Levo has contributed. I think we just need to give ppl info needed to educate+then 'tweak' their Levo +/or T3 rather than being too dogmatic just because something applies to us Individually! Just my view, of course!
Ideal to keep the NP happy or ideal for her patients? Because they are not always the same. Doctors and medics are often TSH obsessed which can lead to undermedication and poor health.
I definitely understand that TSH and symptoms are not the same, probably more than most. I've had no thyroid for 3 years, and had to battle my endo 2 years ago when she thought that my TSH of 0.12 was "fine" when I had massive insomnia, heart palpitations, and anxiety/jitters (much like the original poster). I learned I had to dial in (reduce!) my own med for what I needed and now run my own complete set of labs via ultalabtests.com between visits with her, to find where I feel best. I even got her to now run FT3 for me. Apparently Modern Thyroid Clinic and NP McCall McPherson satisfies her patients quite well as she has 4.9/5 rated reviews on Google with almost 200 patients. She is also most certainly not TSH obsessed and runs a complete set of thyroid labs always with her nationwide U.S. telemedicine practice. She is on Instagram if you care to learn more about her.
Nightmares, just want to let you know they should dissipate in time. I remember after my thyroidectomy and on levothyroxine they were endless. And so incredibly personal. 😔
( Off topic but good information - For those reading who have had nightmares their entire lives, as I have had - separate from levothyroxine induced ones - it can be a sign of untreated sleep apnea. Mine are completely gone after an entire lifetime of them. Another sign of sleep apnea is needing to use the washroom in the night, which comes up here a lot - even not making it to the washroom. And it is not about not sleeping at all therefore I need to pee, it is your brain waking you up by necessity. I used to get up around two to three times a night. Now zero. And push your husbands for sleep studies. People think prostrate when excessive need for urination when it could be sleep apnea. CPAP has changed my life, I believe I have had sleep apnea since I was a child. It is very poorly understood issue, important not to think everything is thyroid-related.)
Great post. Had disturbed nights all my life, worse these last 15 years or so. Maybe menopause and stress but the nightmares and anxiety started 18 months ago and a subclinical diagnosis is likely the cause.
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