I am going for my hospital bloods next week and then will get scheduled a phone appt with endo as my 3 month trial has ended.
I am looking for advice how to best approach her and any good papers as to why supressed TSH isn't bad. Last time I wrote ahead of my appt with the kind help of a TUK member wording the letter and a useful paper to attach as evidence, I think this had alot to do with me getting the trial in the first place.
Any thoughts on my results below and where I go from here?
I know I should have left 12hrs for my last dose of T3 , however I left 24hrs as I wanted to see what that looked like before having my hospital bloods done.
My vit D is v low although since my previous test. (6/08/20) I have been supplementing. 🤔
My ferritin has dropped but I stopped taking my iron supplement, I'm eating a bit of chicken liver pate and minced beef and chicken ( I was vegetarian for over 30yrs so this is good for me (have always eaten fish and eggs) - Have bought BetterYou Iron which I will take for a while to try and increase.
My B12 prob needs to be higher so have also bought BetterYou B12 spray
I am sleeping much better, pretty normal which is great as when on levo I was tired but wired and my sleep was all over the place. My energy and motivation are good.
When I 1st took the T3 I had a couple of episodes where my head felt totally normal, no ringing and no feeling like on a boat - however that is not so at the moment - also when my head is bad my eyes get more blurry.
I get like a skin prickly/static like sensation in my skin (this has improved but is still there) again when I 1st took the T3 it disappeared for a short while. This symptom got worse as my T4 increased when on T4 only - it also links to feeling tired but wired, which I feel has something to do with cortisol. Incidentally I have put weight on since lowering T4 and adding T3 (I feel my weight is more normal for me now). I lost a lot of weight on T4 only, couldn’t put weight on - again I think that’s linked to cortisol.
My head and the skin things are the remaining symptoms that bother me.
My brain fog has improved but I'm still a bit slow.
I feel my body doesn't like the T4 and that could be connected to the skin sensation so I am wondering if I need to lower T4 and increase T3 or just increase T4 slightly.
My cortisol has improved (since I lowered the T4 ?)
As always thank you Slowdragon for your quick response. I did try taking the T3 in 3 doses but didn’t notice much difference tbh. If I forget to take it in the eve, usually a palpitation reminds me and literally within 30mins it’s gone!! When I was taking T4 only I felt my heart often doing little dances.... I suppose if I increase my Levo slightly and my skin thing gets worse I’ll know it’s the T4 causing it but hopefully it’ll get me to where I need to be 🤞🤞
Test from 6/8/20 - (I'd had a 6 month break from B12 to get a real reading, also had a total Vit break for a couple of months - following these results I started supplementing again)
Test from 16/12/20 - I stopped all vits for 2 weeks prior to test.
Vit D - BetterYou spray with K2 3000iu and I take a tablet of 1000iu - I take it with magnesium and Omega 3 after my evening meal.... when I remember - I have 2-3 sprays if I miss a couple of days )
B12 in my B vit and also I have a high strength which I took 1 of so that seems to have worked a little - I have recently bought the BetterYou B12 (but have stopped all B vits as I have my hospital blood test on Monday)
Ferritin - haven't supplemented for a good while - have just bought BetterYou Iron 10 and am also still eating mince and a little chicken liver... seems like I don't get enough iron from food... I also got my Dr to do a full iron panel which came back as no further action.
Folate dropping probably due to stopping B vits for so long, but back on them now, I also eat lots of greens so was surprised re this .
I was strictly gluten free for 2 years, the hospital missed my gluten antibody test 3 times but my last consult they had the results and it said ok (however I hadn't eaten gluten so I'm not sure its valid, Endo said antibodies stay around for a long time... but 2 years??) Anyway I decided at Xmas that I would start eating gluten again and do my own test at end of January/ Feb time (just because I want to know for sure) and also want to see if I feel any noticeable difference...
There has def been an improvement to my cortisol - there's still something not quite right but I do feel much better than I did..
I guess, no matter how healthy I eat I have to concede that I just don't absorb enough nutrients from food alone and I need to keep up with the supps - its quite surprising to learn how quickly my vit D falls !!
I think you probably need to really increase your vitamin d. I take that one and I think the dose is 3 sprays a day not one and you can load vitamin d so doubling your dose during the winter months would be safe to do as you’ve had a recent test and then test again in spring to see how you’re doing.
What test are you planning to do re gluten jamjar- I am interested as I also struggle to absorb iron and have read that gluten can hinder iron absorption. I intend to go GF end Jan/early Feb but would be interested to test first before doing so as last time my gluten was tested I might have been GF at the time and no one ever asked me if I was before testing therefore my reading then back then might not have been a true one.
It’s so annoying and seems such a waste of a test not to do it properly, we have to know everything!!...I’ll just buy something like this one.... healthcheckshop.co.uk/store...
I have enjoyed eating all the gluten things I’ve missed in the past 2 years being gluten free - I’m just enjoying eating what I want and not worrying about it, it’s also so much easier cooking for the family! It will be nice to know for sure though - I had both my girls tested and they were both fine so fingers crossed 🤞
thanks for the link jamjar - I have had both blood test and biopsy done in past and both came back negative - but then that was "negative for coeliac antibodies" but not NCGS - am I wrong in assuming that this test doesn't rule out non coeliac gluten sensitivity? ?
I hear you re eating all the things with gluten in!! I fear I have eaten my last croissant [sigh] and don't look forward to all the time and energy that having to bake my own stuff is going to take up and as for losing my high fibre morning breakfast cereal let's not even go there!! I am going to give it about a year and see what happens, but I did read a recent email from Chris Kesser who said that if you go GF and don't find benefits it could be because you have SIBO.
Good luck with your appt. You mention your current dose is 75 Levo, 20 T3 and the Endo wants to change your dose which makes you unwell. Do you mean he wants to lower your T3 or increase your T4 ? and have you tried those scenarios before?
I have a similar problem. Taking levo and NDT with t3 in. My TSH went down to 0.1 or something similar and doc reduced my T4. Now i have a return to my symptoms: I feel awful all over again. Can anyone suggest anything we can do?? As the original comment asks for, papers on low TSH being ok??!
It would be good if there was a file with 'useful papers people have used with Endos'Does your Endo know you are taking NDT - are you in the UK? My 1st Endo said he wouldn't consider NDT.
Yes my private endo prescribed NDT alongside my NHS prescription for synthetic t4 Levo. Im in the UK yes. I might do some research and see what papers actually exist on low TSH and heart problems v under medication and the health risks of that therein. My endo says its like walking a tightrope! If i find anything, Ill publish on here!
I didn’t actually think you could get NDT in the U.K. on NHS so that’s interesting to know that it’s possible.... I’m going to have a look for papers too so will msg you if I find any too. My appt is on the 24th so still have a bit of time 👍
Your TSH doesn’t change as fast as a T4 or T3 bloods level. It may take 5/7 days for your TSH to change, unlike T4 or T3 which are measuring the medication in your body and will change instantly to whatever dose you are taking. That’s my experience from blood tests in my past. If you want your TSH to rise as you’re concerned about it being suppressed with your up coming blood tests and Endo appointment, then you need to reduce your T3 at least for 5/7 days before the blood draw. Instead of 10mcg twice a day take 7.5mcg twice a day. I’ve had that skin situation you’ve described too. I found I was over medicated, as soon as I lowered my dose it went away. You may just feel better being in range and a slight reduction going forward of T3.
That's a useful tip - thank you. I started on a lower dose of T3 and did build up very slowly - so I know I def need the 20mcg of T3 at the mo..... However my skin thing got worse as my T4 was increased (when on T4 only) which makes me think its the T4 and in someway related to cortisol (the more T4, the less TSH therefore poorer conversion with faulty DIO1 & DIO2 genes therefore not stimulating ACTH) ....
Anyway I guess I'm in the hands of the gods now - and its likely they will want to increase my Levo so I will see what happens
I will try lowering my T3 before the test though and see what happens - also need to get those vits optimal.
Your body may show over medication to you through your skin, whether it be T4 over or T3 over. Then it could be both. I’d only change one at a time though.
Perhaps, but my skin has been like this on lower doses of T4, it just got worse when I increased - all I know is my sleep improved greatly introducing T3 and my skin thing lessened when I lowered my T4 - and my weight changed - So that suggests to me some sort of correlation with cortisol 🤷♀️ I guess it’s all trial and error... but I am so much improved so I’m going in the right direction 👍
Dr Myhill doses up to 10,000iu vitamin D a day. She says no-one has ever died from vitamin D overdose, although technically you can overdose, because it is fat soluble. Are you taking it with a fatty meal?
I’d personally take 5,000iu a day until your levels are better. I got my levels from around 22, to the current level of 100. You are probably aware you need to aim at levels of 100-150, so ignore the low ranges accompanying your results.
I’m sure seasidesusie will comment soon with some excellent advice for you.
Thank you.... how are you getting on?I've just ordered some Doctors Best 5000iu so I will give the above a go. I do take vit D after my evening meal and take an omega 3 capsule with it - the Drs Best are in olive oil too.
I can’t see if anyone has commented on the evidence that low TSh is ok? Only had a quick look at comments. Have you got Dr Tofts paper confirming low TSh is ok? I may have previously sent it to you?
I have got the Dr Toft letter which I used with my GP and it was very helpful. My Tel appt with Endo is on the 24th Jan so I have a bit of time to prepare - This Endo talks so fast and just shuts me down so emailing all info ahead with papers to back me up is so useful. The last thing she said was - I’ll be watching your TSH from now on - so that’s worrying. I tried to get one of the other Endos who I’ve heard are good but she was the only one available... 🤞🤞
I have a load of downloaded and saved stuff but it’s all jumbled up and in different places....so I’ll start going through it all, I’m sure I’ll find something somewhere (thank goodness for lockdown so I’ve got time to do this!! ) 😊
My test dated 6/8/20 I had stopped B12 for 6 months to get a baseline, I won’t stop it again now I know what my baseline is.I do stop biotin a week beforehand - does B12 contain biotin? I use the BetterYou spray.
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