Advice on Levo reduction

[ILR2019]

Since my last post (over 2 years ago) I've been feeling great. I was losing weight and walking around 20k steps a day. The last 2 to 3 months I've become lathargic, my arms ache, I'm tired, I have brain fog and I struggle to get off to sleep and when I wake I feel exhausted. My recent results (this week) from Medichecks have shocked me. I assumed I'd need a dose increase, instead I need a reduction.

My NHS script is for 100mcg/125mcg daily which I privately supplement to 200mcg/225mcg. For 2 years the latter dose kept me symptom free. My GP (after reqyesting blods for a pre op under general) now wants to reduce my dose to increase my TSH & no op until my TSH 'is normal'.

I understand I need a dose reduction, but can I refuse the GP requests and tell them I will reduce the Levo I supplement (they don't currently know I supplement). They only tested TSH and I have been fine with ot surpressed. What could have caused this sudden change and would this be the cause of my inflammation increase? (Ps: I've been lax taking my vitamins and I know I need to work getting these increased). Any advise would be appreciated x

Results below show current and levels taken from blood test back in March when I was not symptomatic.

TSH 0.005 (0.27-4.2) - no change 03/2024

FREE T3 (3.1-6.8) - 5.8 03/2024

FREE THYROXINE 30.4 (12-22) - 25.5 03/2024

B12 82.9 (37.5>)

VIT D 81.9 (50-250)

IRON 53ug/l (30-207)

CRP 5.56mg/l (<3)

[Regenallotment Ambassador]

hello, thanks for your message, it’s great to hear your story and how much better you have been feeling.

Your FT4 looks high and that is a substantial dose you have been taking. If you have lost weight then logically you might need to reduce it.

I’ve been there with an FT4 of 28 but my FT3 at that time was over 10. (Same ranges as yours). I was taking T3/4 combo at the time.

It looks to me like you don’t convert T4 to T3 very well.

I checked your bio and see you have Hashimoto’s. This could be a Hashi swing if so.

If it were me I’d taper the T4 down a bit 200/175 or lower still, alternate days for 6 weeks and test again, consider adding 5mcg T3 after that. (I was on 125 when I was over and went to 50mcg a day for a week then 75 for 5 weeks and tested). That brought my TSH into range and my hypo symptoms returned about 2 months later.

The symptoms of over replacement are often similar to under, I ache when I’m over and under.

is your iron result ferritin? That could give you symptoms, you will need a full iron panel and to supplement if so, recommended here to be over 100 for relief of fatigue.

[ILR2019 in reply to Regenallotment]

Thank you for your reply. My iron result is ferritin. The aching I experienced in the past went when I increased B12 and iron. Im on the case of my vits. I have really neglected them.

My weightloss was about 1.5 stone which has slowly crept back up since becoming symptomatic, but I'll adjust my dose and retest as you advised. Do you know would there be a reasonable level to expect my T3 & T4 to drop wurh a dose decrease or would that depend on person to person?

[Tina_Maria]

Over-treatment and under-treatment can feel similar. Your free T4 is very high and I would also suggest you reduce your levothyroxine so the levels can come down. If you have excess T4 in your blood, this can lead to an increased metabolism and cell turn-over and could be the cause of your raised CRP (inflammation). If your TSH has been suppressed for a while, it may not come down into the normal range and might stay permanently low. So you might want to discuss this with your GP.

Your iron is also a bit on the low side, so I would try to increase the levels.

[ILR2019 in reply to Tina_Maria]

Thank you for your reply. I havent experienced an increased metabolism, at least Im not losing any weight or experiencing symptoms, but I will reduce my Levo dose with immediate effect.

Ive been very lax with vitamins and Im working on increasing them all x

[haggisplant in reply to ILR2019]

I found when I was creeping into midlife/ perimenopause I didn’t loose weight when I was on too much thyroxine. I actually seemed to gain more belly fat after never really having issues with that.

Hyper can give very similar symptoms to hypo. In fact, nhs GPs and an endo mistreated me thinking I needed even more thyroxine, despite t3 being in range. I felt a lot worse. T3 never changed. T4 and tsh did. (And I now worry it set me up for breast cancer. Though I had a baby in my early 40s which can also be a risk)

Thyroid systems are very complex. The body has ways to regulate high t3 and it also varies a lot during 24 hours. I also think that, from years of experience, the half life of t4 (and t3) changes when you begin to creep towards hyper (as mentioned in various publications.)

I now find my best tsh is around 0.8 - just over 1. 1.5 is a tad too high. I’m currently 0.5 and I can tell it’s a tiny bit too much on occasional days. I credit seaside Susie for helping me recognise this. (She once said that some tsh is needed to help conversion.) But it can be very hard to come down as I think you can swing to hypo symptoms for a while. Need to wait a good 3-4 months. It’s taken 6 months to get over my last hypothyroidism bout (triggered by a cancer medication)

[ILR2019 in reply to haggisplant]

Thank you for your very detailed reply. I assumed my symptoms were hypo. I had no idea hyper could mimick them. I wonder if hormone changes could have started this after feeling so good on my current dose. I think I am in for a long ride regulating my dose again.

My main concern is my doctor wants to postpone my operation until my TSH has risen significantly and I know low/surpressed is where I feel best. I wish hypo patients had proper support fron health professionals. All my support has come from people like yourself offering advice.

[haggisplant in reply to ILR2019]

GPs have told me that it is an art form … also I do think it’s individual.

I also think not enough it’s talked about female hormones. When I was on testosterone I went hyper and dropped to 100 Levo for the first time ever. Hair all fell out! I only needed half dose of testosterone. But I also went to x2 utrogestan. Found later that reduces SBGH, which helps testosterone.

Testosterone also increases conversion of t4 to t3. Davina McCall is on only 100 Levo. But she takes testosterone. (she described her morning hormone routine once!) sometimes think she suffered so much because she’s got hypothyroidism.

I had to come off hrt due to breast cancer. And start tamoxifen which is oestrogenic. It took about 9 months for me to get thyroid levels right from that transition. I’m finally at a stable level but it can vary, I can tell from symptoms. Due to my own fluctuations in female hormones, due to tamoxifen, which affects ovaries,

One thing I have done is try to build strength and muscle mass as this increases testosterone. And I’m really noticing how much that’s helping. And will also help bone density. And reduces risk of reoccurrence of cancer, with other exercises. helps mood too!

[tattybogle]

it's easy for us (and GP's) to mistake symptoms of slight overmedication that has crept up on us gradually for those of undermedication orr something else not thyroid related . It's happened to me . I used to be ok on 150mcg for many yrs, then a few yrs after menopause i started having all sorts of random symptoms getting worse over months , which at the time i didn't recognise as overmedication , and neither did a couple of GP's . They suspected kidney stones . urinary infection, bowel cancer ... you name it... none of which i had , and these random symptoms all cleared up (some quickly , some much more gradually) after a slight reduction in levo to 125. I didn't have the classic sweating / overheating / fast heart rate etc i would have expected from overmedication. I had really nasty pain in the kidney area and bladder symptoms , a bunch of other musculo-skeletal aches and pains, i was extremely jumpy if startled , and i had lost some weight , and was overthinking / catastrophising and had difficulty sleeping .

for whatever reason i just didn't need quite as much levo as i used to , and the effects had built up so gradually i just thought it was a bunch of other stuff all coming along at once .

my thyroid bloods were not too different to my usual.... but the TSH was a little lower than it had been before usually i sat around 0.05 ish or slightly higher and at this time it was 0.018.... my fT4 was a little over range 19.9[8-18] , but it has been higher than that on occasion without any sign of overmedication... they didn't test my fT3 unfortunately .

regarding the operation ... once you have got fT4 back in range there may still be a problem with TSH not rising , but if you can show that the fT4 / fT3 are in range the anaesthetist may be willing to go ahead ....the final decision on this seems to comes from the anaesthetist ,, but how one gets to discuss it with them i don't know .

[haggisplant in reply to tattybogle]

My results have been bonkers while in peri.

Even more so when I was on hrt.