My new test results have come back 'Normal' but are causing me some worry. Since I began taking Levothyroxine in November, current results show the following changes: TSH has changed from 5.19 to 0.99 (0.10-5.00) and T4 has increased from 11 to 12 (12-23). T3 was only tested in March with a result of 4 (3.50-6.50). Current results show it has dropped to 3.9 within the same reference range. My previous results in March were labelled as 'Excellent' by my GP, despite the fact that TPO had increased from 168 to 209 (0-75) and both T3 and T4 were at the bottom of the reference range. I am now rather concerned that both T3 and T4 results show little change since I began Levothyroxine last November. Ferritin, folate, B12, Vit D etc are all in range and I use the supplements recommended on this forum to try and keep levels optimal. I also try to follow a gluten-free diet. It was a struggle to be prescribed Levo by my first GP and now the second GP I've tried, although more approachable and thorough, has already told me he will only ever prescribe up to 50mcg daily. Above that, and he'll feel more comfortable referring me to an endo. This was after he gave me a slight increase of 12.5mcg in March to try and appease me. Therefore, my current dose is 25/50mcg alternately. I am aware that 50mcg is a starter dose for most people. A private endo I saw in January said my T4 of 12 was not a concern and at that stage T3 hadn't been tested so he didn't even bring T3 into the conversation.
I'm now beginning to question myself: should I just keep quiet and be grateful for the dose I'm taking or should I be concerned? I HAVE seen some improvements, especially regarding 'brain fog' and energy levels but other symptoms persist and my weight is still steadily rising. Two GPs and an endo think all is well but I've learned so much on this forum so I remain unconvinced and this adds to my anxiety. Is my age making everyone over-cautious (I'm 61) or is it my medical history? I have suffered recurrent DVT and am taking life-long warfarin of 4mg daily. I also suffer from Sjogren's syndrome but only take eye drops and gels. I was diagnosed with high blood pressure last year so I'm also taking medication for that.
Everything seems such a battle, so exhausting, but my faith keeps me strong and knowing I can turn to this forum is such a comfort. Would someone please tell me what my next steps should be as I'm feeling very confused at the moment.
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Got bit confused re your dosing. You say your GPs will only prescribe 50 mcg levo daily, that you were begrudgingly given extra 12.5 mcg , but now on 50:25 mcg alternating days. So why not on 50 mcg daily? I suspect your drs. are frightened by TSH of 0.9, but the range does go down to 0.10, so you have room there to add more levo. and still be ‘in range’...you are right your FT3 is low as 5 would only be halfway. I used ‘spare’ levo. to raise my dose then told my gp what i’d done, and that I needed new blood tests ( next week, after 6 weeks on increased dose).. results came back within his range ie TSH, tho private test showed T3 still low..and prescription raised without having to see him! You will probably need more than 25 mcg alternate days.... perhaps you should take up the Gp’s ‘offer’ of seeing an endo. who might not be so concerned about low, even below range, TSH if FT3 rises.
Hi, thank you for responding to my rather long post! I wanted to give members the full picture in the hope someone could make sense of it all....... My GP increased my Levo dose from 25mcg daily to 25/50mcg on alternate days, and only because I said I felt very strongly I needed an increase. He refused to increase it by a full 25mcg. My TSH at that time was 2.01 (0.10-5.00). My Medicheck test at around the same time was 3.28 (0.27-4.2).
I am considering a visit to a private endo in Birmingham as another member on this forum said she'd found him to be a 'caring' man. It all depends on whether other members think my concerns are founded. I dont want to see him if there's a danger he'll report me as a
hypochondriac. I feel so unsure of myself at the moment.
If you have symptoms of hypo then drs. should listen, but you know reading this forum, for lots of us they don’t! I think being proactive in our own health is good, so even tho i don’t agree with private meds( and our need to have to use them), if a recommended private endo will give you peace of mind, never mind more levo, then go for it, as no doubt nhs endo would be many many months before you’d get to see him/ her.
Thank you, Slow Dragon. That gives me some reassurance; I wondered whether I was worrying unnecessarily. I live in South Staffordshire and couldn't see a recommended endo in this area on Thyroid UK's list. I know I will need an endo to increase my dose above 50mcg daily in the future, as my GP has already made that clear. I would like my T3 and T4 to be higher in the range, as recommended on this forum, but my TSH may become too suppressed for my GP to accept so my only chance is to see an endo. I hope a private endo will be more thorough and less rigid in his views. However, so far I have found all health professionals to be offhand regading T3 and T4 values, focusing on TSH instead.
This part concerns me, assuming this is freeT4. You're taking Levothyroxine, which contains T4 only, so this result gives us the best indication of how much you're getting into your blood. This is absolutely scraping the bottom of the range. Most people will need it at the very top to feel well.
I'd say you will need a few increases of 25mcg to get you there. And hopefully you should feel a lot better.
Thank you, SilverAvocado, this is exactly what I am hoping for. But I'm worried that if I'm ever given enough Levo to raise my T4 levels to a decent level, my TSH will be almost undetectable. I don't know whether even an endo would be happy with such a suppressed TSH. The fact remains that my T4 has only improved by one point since being first prescribed Levo last November and my GP is very reluctant to increase my dose. He has labelled my last two sets of results as 'Excellent' or 'Normal'.
I suspect you're right, you are unlucky to have a TSH on the low side. Although most people's TSH will be quite low to get the freeT4 all the way up. This is why TSH is very inadequate for dosing
Some Endos can be just as bad or worse than GPs. Not all GPs are as bad as this one, though. The first option is to try and find a better doctor, I think. If there are others at your practice, or if you have to option to change practice? Or did you mention to possibility of a good private doctor from the ThyroidUK list? Hopefully no on has sneaked onto the list who would dose on TSH!
Thank you for your time, SilverAvocado! This is the second GP I've seen at my practice. The first one didn't want to prescribe Levo to me at all. I had to visit a private endo before she agreed I could stay on the 25mcg trial she had given me (due to my pleading with her). She wasn't happy that I'd 'gone over her head' so I thought it best to see a different GP at the practice. He seems far more approachable and thorough - I wasn't tested for T3 until I started seeing him. However, as long as my results are 'in range', he doesn't see the need to increase my dose. I do wonder whether the first GP had written something on my records because I can't understand his reluctance to increase such a small dose. I will be making enquiries about another private endo appointment next week. I think this is the only way I can hope for my dose to be increased.
Yes, I think you're right that its a sticky situation, you could end up stuck on that dose for a long time. If it's an option to see a private Endo that's a good way to get a chance to have it sorted out.
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GP wants to decrease Levo
GP wants to reduce my Levo...🙁
Remember me asking you if I'd be crazy to start taking 50mcg of levo?
How am I supposed to function on 50mcg levo (base dose) daily without a thyroid?
My GP has reduced my levo to zero!
