Got my blood results from MMH (below). Test done approx 8am, 24 hours after last levo dose, fasting, no biotin.
Six weeks ago the GP increased my dose to 100mcg, but I have been taking 87.5mcg (took 100mcg on a couple of odd days just to see how it felt) because I wanted to go slowly with the increase because last time I increased (to 75mcg) doing a full 25mcg increaee my tsh dropped to just below range, luckily my gp said “no action” at the time and I continued with 75mcg until I started to feel not so good again with symptoms and my nhs tsh when tested was 1.96. (My previous mmh tests , before that increase, taken at roughly the same time, under usual forum protocol, showed t4 of 15.5 and t3 of 3.4).
I feel like I could benefit from going to the full increase to 100mcg as prescribed, but I don’t want to completely suppress my tsh because if the gp calls me in to check on the bloods now and the tsh is low they will decrease the dose. I know they shouldn’t be dosing by tsh, but they are, they do, and here we are. I’m wondering if I leave it a bit longer on this dose if the t4 and t3 will go up a bit more as it is only just at the six weeks mark. Do you think that might be possible? I don’t feel horrendous and my elbow pain seems to have cleared up. I am achey and tired but that could be because I’ve started walking in the park again after not going for a while. I do think if I could get the t4 up to about 19 or so (on the mmh range) that would make a big difference to the conversion. Just running this by the forum to get any thoughts.
my results now =
TSH = 0.66 (0.27 - 4.2) …(down from 1.96, This is what I thought would happen on an increase from 75 to 87.5 daily)
t4 =17 (12 - 22) (up from 15.5)
t3 =4 (3.1-6.8) (up from 3.4)
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JoJoloveschocolate
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If you need your results to settle more, which IMO is a good idea I would leave it another month or even more to retest and see where that leaves yoru results. Certinly there will be changes in that time. Be sure to test under the same conditions.
Your FT4 is only 50% of the range so you do have plenty of scope for an increase. Give yourself the best chance of getting that by waiting it out to retest on the same dose.
Your conversion really isn't good at all and likey in time you may need to think abotu adding some T3 but raising your FT4 first is a good idea. It needs to be well above 70% of its range.
Thank you so much, Jaydee!! I’m going to go with your advice and leave it another month…or longer if i feel like i’m improving (have improved before after the 5/6 week mark) and then test again. I’m taking a multi vit of vit d, selenium, zinc and vit c (no other vits in it) and all lowish doses because I’ve been really scared about overdoing it. My last b12, folate and vit d tests were all very good. My ferritin was awful at 30 and I’ve been eating more iron rich foods. I’m testing them all again later in the year. I’ve been looking at adding a magnesium and am still reading around the different types before i make my mind up.
Increasing the doses is such a long hard slog! My t3 and t4 go up, tsh drops and then the t’s start dropping again and the tsh slowly rises….like a laboriously slow yo-yo! I think if i can get to a good level of t4 that then holds steady the conversion might improve.
Once I waited through week 9 and even that time made a huge difference in settling… felt so calm and steady (steadily tired and such, but it was so smooth!)
If you’re inclined and have made it this far - I think you may enjoy the feeling.
I can’t comment on using this to control TSH as I am also on T3 (although I too am straddling 87.5 and a 100 T4 after taking a long time to crawl up from 25->50->62.5->75 and now in the middle a going to 100. My FT4 was mid/lower range too). Patience and time required is such a slog….
Yes, FiR, I’m going to hang on a bit longer and see how it goes. This 75mcg to 87.5mcg transition has been a bit rough, but I think it might still be the tail-end of the 75mcg dose still lingering on as there does seem to be a lag for me between dose increase/improved blood results and improvement in symptoms. My bloody weight is doing my head in though. I lost a bit when i first went to 75mcg then the weight loss stopped and has creaked back up again. I’m like The Blob. My husband set up a doorbell camera and I saw myself on the playback..O…M….G! I look like a great big fat gnome waddling out! I know it’s good to be kind to ourselves, but hey…truth is truth! 🤣
Also … I did 75 for a few months! Then did 3-ish weeks between 75 and 87.5 and I’m a week into 100 daily. I do NOT like this volatility… at all!!! I have to tell myself every day this past week or so to just get to 6-8 weeks at this dose. No doubt I need 100. But have to take my own advice and busy myself with other things in the titration period. Pretty sure I will need to reduce my T3 but just have to hang on for this to settle to be sure that’s the next lever to pull. Ugh!
I hear you! Some days I end up thinking I’m actually not gonna get through this!!!! Then there’s a good day or a two, or some pain or other settles down again. This has been my life for sooooo long after being diagnosed with CFS in 2018! On levo though there have been some good effects, so I’m hoping in time the weird-mad-squiggly line of recovery will become a bit straighter and more consistently upwards! Hang in there xx
All I can say when looking at yr T3 is, 'What!' I thought mine was bad enough@3.9 (on a scale to 6.8)+don't know how you cope seeing T3 is so needed in every cell of your body! I know there's leeway for a raise in Levo but when I was prescribed T3 (do not convert well at all), the blob disappeared+I lost the swimming ring round my middle! And no change in my diet as it was healthy anyway! My self confidence rose as I could get in my clothes again - and not an elastic waistband to be seen! I know there's so much to learn about getting your vits optimal (that really helped me) but getting your T4/T3 at the right levels, too, for you is so necessary to feel well. Hang in there! 👌
Thank you, Lottyplum. The further I get down the treatment road, the more I can see that my T3 conversion is not looking great. It really does worry me because I was hoping to get through on t4 alone so I wouldn’t have to bring up the subject of t3 to my gp because everything seems like a battle with them, apart from one woman who has been lovely all through, but it’s not easy to get an appt with her. I’ve been toying with the idea of bringing up my CFS/ME diagnosis and how I’ve been pretty much chucked on the scrapheap whereas other patients with long term chronic health complaints are seen in the clinics once pr twice a year. Maybe if I do need t3, which is looking more and more likely, then perhaps i should make a bit more noise about how the t3/t4 levels affect the CFS (that I think is probably all related or caused by the hashis anyway)! I find it all very hard. x
Many years ago I worked with a CFS/ME group +saw many autoimmune issues went hand in hand+ that gluten free or dairy free was part and parcel for so many sufferers+offered some relief. Have you looked into gf especially? Some Hashi folk also find dairy free helpful. For me, after so many years on Levo+ignorance from GPs I utilised the list of private Endos from Thyroid UK+found myself a private Endo who would prescribe T3. I use Monitor My Health to get TSH, T4+T3 blood test, which most GPs don't/won't request! I try to keep well away from the GP surgery+so prefer to pay for private Endo+private prescription from Roseway Labs. I would do without other essentials to pay for these! Do take advantage of such good info on this forum+I trust you're path to good health will be the result.🥳
Thanks LP. I have been gf for a few months and find it has made me feel better with gut issues.
A lot of hypo symptoms have got better or gone completely on a combo of levo and gf, but its the weight/energy/metabolism issues that remain a problem at the moment and they are probably more related to t3. That said, I still hold out some hope for feeling much better with a better t4 level - once i get to a point where the t4 level holds steady instead of reaching a peak and then dropping. It was 17 this time, but I have a feeling in a few more weeks it will have dropped again, taking the t3 level with it. If that hapoens I can increase to 100mcg. My plan (at the moment) I think is to work my way up to the right dose, see/make sure that it is holding, wait for levels to stabilise and then have a think about t3 if necessary. If it comes to that I’ll speak to the lady gp at my practice first (i think she is also on levo and may be more understanding of t3). I’ve also been looking at a private thyroid gp and have decided to go with them if it comes to that. Good to have a Plan B. And a Plan C. And sometimes a D. Thanks for you replies they have made me feel better, lovely to think that I might well be on the “path to good health.” I’ll carry that thought with me. It just seems sometimes like the path is way too long, but…onwards! xx
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