I would be grateful for some expert advice once again .
I felt I had everything under control as much as was possible . After getting levo increased as suggested on here I began to feel much better on 125mcg daily . The Gp agreed but wanted my bloods monitored . All was ok for a while but he has rang to tell me I have to reduce because my levels are :
TSH 0.01 ( 0.27 - 4.2 )
FT3 5.45 ( 3.1- 6.8)
Ft4 22.2 (12-22)
He has agreed to 100/125 alternate days and to order bloods again in a couple of months . I have felt well on the 125 daily although very hot especially during the night which I believe is an indicator of high ft4 .
My folate is 8.7 which is the best it's been.
My b12 went upto 1150 , top of the range is 900. I was told to stop my b12 supplement and it has fallen to 545 . I am going to start taking it again but maybe 3 times a week .
Vit d wasnt tested .
I would welcome any advice to get back on track again . My ft3 is the best it's ever been and I am a little worried about starting to feel out of sorts again with the reduction of levo .
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Julesd
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I'm at the top of the range and over at times. It's the only way I can function on Levo. If you feel well then I would leave it as is but if you think you may do better alternating then give it a try. If you were getting too much Levo you would feel it.
You might want to also consider T3 as it would appear you’re not converting well as your T4 is top of the range but T3 isn’t. The fact your TSH is so low may be impacting conversion however so I wouldn’t put in T3 just yet. Do you have any other blood tests where TSH is perhaps a little higher as it would be interesting to see the results of T3 and T4.
Ultimately the blood test is just a guide, how you feel is so much more important. You are just outside the range of T4 and maybe you only need to reduce your T4 ever so slightly. Perhaps one day a week or just at the weekend so that gives you 2 days a week of 100mcg and then retest in 6 weeks.
You might want to also consider T3 as it would appear you’re not converting well as your T4 is top of the range but T3 isn’t. The fact your TSH is so low may be impacting conversion however so I wouldn’t put in T3 just yet. Do you have any other blood tests where TSH is perhaps a little higher as it would be interesting to see the results of T3 and T4.
Ultimately the blood test is just a guide, how you feel is so much more important. You are just outside the range of T4 and maybe you only need to reduce your T4 ever so slightly. Perhaps one day a week or just at the weekend so that gives you 2 days a week of 100mcg and then retest in 6 weeks.
Thankyou Dk123 tsh has been the same for a while but I'm not concerned about it . When it was higher on the past ft3 and ft4 was lower . I know my health has been much better on 125mcg but maybe as you say just reduce a couple of times a week . . I will be asking him to read Dr Tofts articles and hope he will take it on board . All advice is really appreciated
Maybe go along with it and note the effect on ft3, it’s common and well known that mono therapy with levothyroxine has to push ft4 apparently too high to get decent ft3. That said it is possible to optimise ft3 on levothyroxine by splitting the levothyroxine into 3 or even 4 doses - I take 4 from midnight to midday eg bedtime, whenever I wake in the night, waking in the morning and before lunch! This has allowed me to reduce levothyroxine to avoid excess levels while keeping up ft3. However, you may need a small amount liothyronine to manage on a lower levothyroxine dose and acceptable ft4 levels.... the GP should help with this and not just chop and change your levothyroxine according to doctrinaire and simplistic blood test results, which will end up strapping you to a roller coaster of blood levels, there’s more to it than that.
This is a brilliant piece of info. I shall try taking my Levo in smaller doses as works for you . I am not a good converter methylator so the hormone builds up in my system and causes over med symptoms. I take T3 multi dosingThanks for posting
Thankyou Hashihouseman I will look into this . It's taken me a few years to get to this point with levels and supplements then to be told to start reducing my dose isnt something I am reluctant to do really . Thanks again for the help and advice .
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Recommend you test vitamin D and ferritin
Many people on just levothyroxine need high Ft4 in order to get high enough Ft3
Suggest you say to GP you want to leave dose as is for further 8 weeks and retest
Meanwhile getting vitamin D and ferritin levels tested
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
Currently your Ft3 is 63% through range- about perfect
Helpful calculator for working out percentage through range
Thankyou Slow Dragon , I think I needed some reassurance that levels are fine . The ft4 is only slightly over so I dont understand the panic that my GP was displaying. I will ask him to read Dr Tofts article , not sure if it will make much difference. I did show the article to another Gp in the practice in the past when low TSH was being questioned but she just dismissed it .
I had the medichecks thyroid test after the GP said levels of ft4 too high just to check my ft3 . It's the best it's ever been so it's obvious to me that the 125mcg is beneficial to me .
I will look at testing vitD and ferritin .
Thankyou so much for the invaluable advice and guidance .
I am in the exact same boat. After gradually worsening symptoms over the past couple of years (been on 125 levo for years) I eventually managed to get my GP to refer me to an endo despite bloods being in “normal” range. I had paid for private bloods as GP only tested TSH and T4 - found out I had Hashi and low T3. The endo agreed to increase levo to 150. I began to feel a lot better. But lo and behold, 6 weeks or so later, I got a call from my GP very worried as my TSH was done to 0.01 and T4 slightly above range.
I refused to reduce the dosage until they tested T3 as I was feeling the best I had in ages - not perfect but I was more than happy. Results came back that T3 had increased but still only about 50% through range. GP adamant that levo needed reduced. After emailing endo he suggested alternating the 150 dosage on different days.
Endo told me he didn’t believe in NDT / T3 although he made me think he would consider it at our first appointment.
I have being doing this sine 1 Jan and recently started going backwards. Not sure if it was thyroid or a virus but was ill at start of week and although better I am now exhausted and feeling rotten. As I am 4 weeks into this new regime, I might persevere and get the bloods done to see what they show and what GP says. But to be honest, I am expecting very little help from GP or endo. I have contacted the admin on this site and will be contacting one of the private endos recommended. I have already reached out to them. If my GP and current endo refuse to treat based on T3 and symptoms/patient experience and just go by TSH, then I will have no option but to source my own meds.
I hope you have a better experience with your GP but I would be prepared for a difficult conversation. Use the information from this site to argue your case and show that you have done your research and understand the condition. And just hope that they listen.
I have gone gluten free and supplement vitamin D and B12 - all on the advice of this site. Whereas GP has been of little help - you’re fine, all bloods normal. This site has stopped me from despairing completely!!
It’s very frustrating. And also a little daunting if you have to go down sourcing your own meds route. I have hesitated doing this so far, but I am now resigned to this if required.
Hi Trisha , thankyou so much . Yes I agree , this site has kept me sane along this thyroid journey . It has educated me so much .
I take many supplements as advised on here and it has been trial and error along the way . I feel that I am at the best I have been and for my GP to now start tampering is not a road I want to go down .
In the past i considered sourcing t3 but admin advised increasing levo . I obtained some Levo myself and increased from 75/100 on alternate days.to 100/125 alternate days . I eventually told GP and he agreed to prescribe the increase but with regular blood test s. I saw a different GP last year and he agreed to 125mcg daily , stating that he listens to the patient and goes off how the patient feels . I thought I had struck gold I was so pleased with his attitude . Sadly hes left now and I am now back to GP 's who just follow the guidelines.
I did think in the past that I maybe needed a touch of t3 but once I put all my blood results on here the advice was that I needed to increase Levo. This worked for me and things improved dramatically.
Anyway I will plod on but am only prepared to maybe reduce a couple of times a week . Thankyou so much and I wish you well with your journey . It's so reassuring to know that theres always help on here .
If you felt better than before on 125 mcg, with a sligthly above range FT4 and FT3 well in range, you should be allowed to stay on that! When on levo only, it´s common to need top-in-range FT4 to ensure adequate T4 to T3 conversion. I recently read that whereas people without thyroid disease typically have midrange FTs and a TSH around 1-1.5, hypos usually need FT4 close tat the top of or even sligthly above range and a TSH below 1. Lowering levo will result in lower FTs. I hope your doctor will allow you to go back to 125 mcg if necessary.If you convert T4 well enough, there may not be any need to add T3. I have found taking T3 rather tricky and that taking enough T4 (which in my case is 200 mcg daily) for my needs is a much smoother ride, without the ups and downs of combination therapy.
Thankyou PurpleCat71 , I am taking everything on board and will be having another discussion with my GP . I thought I had everything pretty much balanced out but I realise how short lived that can be with this disease . Thankyou so much .
Recommend wearing a Fitbit or equivalent to record resting heart rate and activity levels
My TSH is always low. Was low when on just levothyroxine, and even lower now on NHS prescribed T3 and levothyroxine. Ft4 and Ft3 both in top third of range
My resting heart rate is 55-56.
Whenever dose has been reduced resting heart rate drops under 50 and feel terrible. Plus numerous hypothyroid symptoms return.
Been very helpful to print out weekly Fitbit records to show medics. Resting heart rate never above 58. I walk over 10k steps everyday.
I do wear a fit bit and manage 10,000 + steps daily. I havent given it much thought but my resting heartbeat was usually 75/76. For quite a few months now its 80/81. Is the increase due to the elevated ft4 . Thanks for sharing the post .
My understanding it that you cannot OD on B12 as it’s water soluble. Also meds should be stopped for 4 months before testing. I would ask for the Active B12 test , only then will you know what is available for use in your body.
In Japan, the range starts at 500 and there is no upper limit.
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