really could do with some advice and support again. I just don’t know where to go from here.
September 2022 Levo 100mcgs
TSH 0.01(0.27-4.2)
FT4 16.7(12-22) 47%
FT3 4.78(3.1-6.8) 45%
January 2023 Levo 125 mcgs
TSH 0.02 (0.27-4.2)
FT4 18.1 (12-22)61%
FT3 4.6 (3.1-6.8) 40.5%
Im still feeling rubbish/not working/fatigue/constipated/naps/joint pain etc
My GP thinks I’m still in 100mcgs. But I’ve been able to sneak in repeat prescriptions early so have been taking 125mcgs. For my weight I could be on 150mcgs. Do I just try 150 to see how I feel. I can’t see my GP putting up the prescription with a TSH so low.
Vits done in September and advice from here was that they were all pretty good and I’ve continued with SeasideSusies advice ( although the last couple of months I’ve been a bit slack in that department).
I’m thinking that if I confess to my GP that I’ve been on 125 again ( was on that last spring) I could sneak an extra 12.5mcgs on top just to see how I feel. Is this a good idea?
Sarah ( sick and tired of feeling sick and tired)
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SarahJane1471
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How long had you been taking 125mcg levo before the 01/23 test?
We should be on a steady dose for 6/8 weeks before testing
It looks as if you are not adequately converting T4 to T3...your FT4 has risen but your FT3 has dropped
Your low FT3 is most likely the cause of your symptoms.
T3 is the active thyroid hormone so low FT3 = poor health
It is possible that raising your T4 may generate enough T3 to improve your well being....you still have plenty room to raise your T4....so yes, raising levo may work....even to 150mcg.
Some people need a higher dose of levo to sufficiently raise FT3.
However, if raising FT4 towards top of ref range does not help you may need to add a little exogenous T3...but that's not for now.
One step at a time...trial and error can be involved!
Keep working on the essential nutrients as SeasideSusie advised
So yes....speak to your GP about an increase.
Your TSH is low because your combined FT4 +FT3 is fairly high but that does not mean your active thyroid hormone T3 is adequate...and at only 40.5% through the ref range this is underlined.
Ideally both Frees need to be approaching 75% for good health!
TSH is not a reliable marker ( scientifically proven...see link!) so do not be limited to dosing by TSH.....medics are not taught that FT3 is the most important result followed by FT4 and this is causing enormous problems for patients
You know your own body better than anyone else and medics are supposed to take clinical evaluation ( signs and symptoms)into consideration when they diagnose....not just a number! They often fail to do this!
I hope some of this rant helps to turn you into Sarah ( NOT sick and tired of feeling sick and tired)
Thankyou DippyDame . Appreciate your reply. I will save your link to show my GP if necessary. I was on 125 last spring so it should not be too much of a problem to get that dose arranged. I only reduced it in the hot weather because I felt jittery. Then I went down the adding Progesterone route which was a disaster for me. I may have done the test a little too early for the rise up to 125 (end of November I think)
I’m going to contact my GP get the 125 prescription then add a little (12.5mcg) and see if it helps. My T3/4 conversion has never really been a problem.
I’d rather get the levels up just using T4 as I can’t afford private endos/prescriptions.
I’m back on the vits regime and going to try and go gluten free as SlowDragon suggests.
Hi, I have no thyroid as I had it destroyed with Radioactive iodine when I as in my early 30s . My GP ad me on thyroxine for years but I was never well . Eventually I begged to be seen by an NHS Endocrinologist, who ran all sorts of tests , he went through all my medical notes then told me the GP "hadn't a clue" about treating my Autoimmune Thyroid disease. Turns out my family carry a faulty gene for converting thyroxine to the active form, as my late mum and dad, my maternal aunt, my niece and my daughter ALL had thyroid issues! However this wonderful Endocrinologist was able to give me back my life by adding 10mg of T3 to 75 mg Levothyroxine, as he spotted the problem right away, because I can't convert Levo to the active form, the addition of the T3 does it . He is right, GPs haven't a clue , all they do is go by the TSH blood test which is useless! You should look up the Thyroid Patients website run by Dr Westin Childs, a real eye opener.#, and another brilliant site is TPAUK, (Thyroid patients Advocacy , United Kingdom. Both are very supportive, and reassuring, especially if all this stuff is new and a bit scary. And if you can, get referred to an NHS Endocrinologist too. All the best!
DippyDame SlowDragon 🤦♀️😩so I’ve tried the extra 12.5mcgs for two days! What a disaster. I have not been able to sleep for two nights because I’m “wired”. This is despite my usual sleeping tablets. This is really bad for me because if I don’t sleep then I can’t control my PTSD. I’ve not taken any Levo this morning as I think there is just too much in my system. My body just won’t relax. In a completely different way to my PTSD. I will start again tomorrow with 125mcgs.
yes always MP. Thank you. Glad it’s not just me that can’t tolerate increases. Problem is…. What next? Where do I go from here🤷♀️. Such a struggle to get even half well. I may have to take that trip to a private Endo and put it on my credit card. But what cantthey do if I cant tolerate Levo. NDT T3. Then it’s more cost implications 😩
Right going to stop getting stressed about it all!!!!!
As I suggested in my reply above you may need to add a little T3....your FT3 is low.
You say you have a year's supply of Greek T3 so you are ahead of the chase!!
You are creating problems before they exist.
You need the correct dose to "stabilise" and unfortunately it's sometimes a case of trial and error to find that dose.
i've been there and I understand how daunting this can seem .....taking the first step is the hardest.
You could try adding quarter of a T3 tablet to your 125mcg levo.....adding T3 will lower your T4 slightly so no need to reduce levo at this stage.
Reaching your therapeutic dose is unlikely to be a smooth journey. (So unlike like taking a paracetamol tablet for a headache) so you need to be very patient
If you feel confident after adding the T3 wait 2 weeks ....we can then advise you how to proceed to the next stage.
Thankyou 😬I’m going to leave the 125 to settle a bit and if I still feel rubbish I’m going to use the Uni Pharma. SlowDragon has advised me how to add it if needed. I’m just a bit anxious about trying it tbh. I’ll do another MMH test in a couple on months then go from there. Thankyou . My credit card can rest easy
Hi! SarahJane. I was a borderline case when my doc decided I needed Levo but, fortunately, only prescribed 50g dose. I had put on weight and struggled to lose it, felt bloated and struggled with depression. I decided to look at my diet and lifestyle and made changes, which have made such a difference and I have lost weight, spirits lifted and feeling much more like my old self, before having to take Levo. I know once you are on Levo, they recommend you have to stay on it for life...I'm not sure about that, but I figure as I am on such a small dose I'll keep going. My last blood test had shown a marked improvement. If you are interested what I did, contact me direct and I'm happy to share. One thing I would say, after seeing your comments below... Coffee, and especially with milk, shouldn't be drunk until 4 hours after taking Levo and coffee should never be drunk on an empty stomach. The oils in coffee can upset stomach acid and also cause reflux. Levo also shouldn't be taken with food - wait at least an hour after taking it, before eating breakfast etc.. I hope making small changes help you. Take care..
Thankyou for replying. I was borderline too, but felt so terrible that I wanted the Levo. I certainly am not as bad as BEFORE starting Levo. Each raise ( apart from the latest one) I’ve seen improvements so I think I needed it. What’s so frustrating is 4 years ago I was a fit size 14 ( very active) . Now I’m a size 18 couch potato, not working, desperate to get back my life 🤦♀️
Levothyroxine doesn’t “top up” failing thyroid…..it replaces it
50mcg levothyroxine is only the standard STARTER dose levothyroxine
Likely you are not on high enough dose levothyroxine
Dose is increased slowly upwards in 25mcg steps until on approx 1.6mcg levothyroxine per kilo of your weight per day
ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test
Most important results are always Ft3 followed by Ft4. Aiming for high enough dose levothyroxine to always have Ft3 at least 60% through range, frequently Ft4 will need to be higher at 70-80% through range
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
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