Oh shoot. I have overshot again in my Grand Plan. I have put off my full thyroid panel because of some intervening developments. I am now seven weeks on 100 mcg after my fiasco since November last year. I tried T3 and put up the dosage too quickly. Stopped it. Then I increased my levo (local endo advice without seeing me). I had to reduce that because of dreadful symptoms from 125 mcg to 112.5 mcgs and then to 100 mcg when I started the T3 with private endo. Same issues again with the T3, so it was dropped again and I remained on 100 mcg levo. I have managed due to some hard thinking but I know I am undermedicated. Echoing in my ears is the fact that the private endo has now refused to treat me further and also undermined any confidence I had in levo.
Blood tests from January 2023
TSH 1.88
FT3 3.8 (3,1-6.8)
FT4 18.3 (12-22)
My GP asked for a number of tests before referring me to a Clinic for CFS/ME.
30 March 2023
TSH - 1.83. I knew they would not look at hormone levels but I was waiting for my six weeks on one steady dose before taking my full thyroid panel (privately). The usual NFA result.
HA1c lowered by 3 points to 49 (no change to diet/carbs etc)
Coeliac - Clear
Erythrocyte - Clear - no inflammation.
Ferritin up again to 507 although tried cutting down on red meat.
VIT D now 78 so I think I need to still supplement.
I have not got the figures in front of me (brain fog) but folate looked a little low too.
I have tried to get an appointment for a blood draw for my full thyroid panel but it’s another three weeks. I could be half way to my next full thyroid test by then, having been steady on the 100 mcg for seven weeks now! Maybe on 106.25 mcg!? Dizziness, Raynauds, wobbly legs and trying to get out of chair difficult and insomnia and sense of reflux all bothering me again etc etc - even after my recent decision to be more accepting of my illness. I do feel a little more confident despite the return of theses symptoms.
My thought is to go ahead with a small increase in levo - 6.25 mcg. Obviously I am looking to the forum for support or a definite NO!
Thank you.
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arTistapple
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I have been remiss with my vitamin supplements since November as I have been all over the place. Normally daily Vit D3, 5,000 plus separate K2 MK-7, 75ug, Thorne Basic B Complex, Magnesium 200mg plus occasional Selenium 100ug which includes Zinc 15mg, B6 2mg, E a-TE 15mg Vit C 90mg.
Mostly get the same brand of levo. No apparent problems. Avoid Teva because of comments on the forum.
I do avoid gluten as much as possible. I have been trying to understand/prepare for Dr. Myhill’s Paleo-Ketogenic but it will take some application.
I made some good decisions very recently about my situation - the last of my hormones being played out I think. I am now running on ‘fumes’ and I do not want to get myself any lower/under medicated.
I know this is another long one. I just feel I have to do the best explaining I can.
I feel I know so much more since doing the T3 thing 2x. Not a pleasant experience. I started on 3.125 mcg as I was using a 25 mcg pill cut up. It probably was not accurate as the pieces got smaller and smaller. I did that 1x per day for about 7 days. I would have to look out my records to be precise but it was about 7 days. I was doing well, enjoying being a bit hyper, or at least moving about with ease. Interested in things. A bit of life about me. No brain fog. Peeing a lot. Left leg reduced in width (this remains) to match right. I thought ok, no bad effects and attempted a bigger dose. I probably should have split the new dose, one morning, one later in day. However I took it all as one dose (6.25 mcg). What seemed out of the blue, I started palpitations that very evening. It was unexpected (I was doing well). It was not a panic attack. At least it was not to start with. I had a previous situation where I upped my Levo according to the NHS endo I had never seen. My blood test showed my T4 running high. The doctor remarks from the testing place advised that should I sense any problems with my heart, I was to go straight to A&E. That dose caused too much T4 and eventually I had got horrible symptoms - as if I was a cerebral palsy sufferer. My physio described it as ‘spaghetti arms and legs’. I had already cut down the levo before the T3 but the doctors advice worried me. So when the T3 did cause rapid heart (and accompanying anxiety) I attended A&E. Apparently ‘nothing wrong’. So no more T3 until second attempt at T3 (private endo) when the same thing happened again. The private endo had given me the same advice. Stop the T3 if there are any effects in my heart. The dose was slightly smaller as I cut up a 20 mcg tablet. Dosage 2.5 mcg then after a few days of feeling very well (5 mcg) same thing. I stopped immediately but the palpitations came and went for the next 3 months, with 3 visits to A&E. I am aware of them slightly now but not so worried. Nurse Practitioner took time to explain about palpitations (jury still out) but Atrial Fibrillation, which my husband has is apparently unlikely. I am getting one of those monitors for 72 hours to check (May). I am restraining myself not to hurry as, even if not dangerous (ha) I am not wanting a repeat. It’s such an unpleasant thing. However I felt sharper until recently (T3 first experiment was early December). My leg has remained slim (It’s been swollen for many many years). I was, until recently getting about better. I remain more interested in things outside myself. Thank goodness. Tiredness and insomnia etc etc have crept back. I have not got the impression from anywhere that even a small amount of T3 could have such a lasting improvement (at a price) but it’s running out now. My muscle stuff in particular is a big problem. Seeing physio for another frozen shoulder etc etc.
As time passes I am more confident in my sense of what’s going on. Not brave enough to try T3 right now but when I consider how much better I felt in the short time taking it, I think I will be back to it. I want that sense of well being again before the fiasco!
I have total respect now for the tiny dose. I probably need more but new respect for the power. My feeling is if you have got to 6 mcgs and can manage any ‘side effects’ stick with it. We can’t compare ourselves with other people we read about taking larger doses. You might have to increase it but in your own time.
As I say I have been surprised at the change in me (still moaning and wanting more) after say one week of 3.125 mcgs and one week of 2.5 mcgs. I have been told there is no sign of my previous heart attack on my ecg. I had a previous ultrasound which showed clearly the bottom portion of my heart was not moving maybe five years ago. Heart attack 20 years ago. Am I being gaslit to get me out of A&E? My heart seems to be working well (according to the medics). I would like to think my levo plus my jaunt with T3 literally has changed things. I have no idea if it’s wishful thinking or as I say being subject to being gaslit.
Please respect your dosage. It really could be your ‘sweet spot’. Maybe not forever but just for right now! Good luck.
Is NDT an option for you? I was only able to tolerate 5mcg of t3meds . After much thought, I decided to try NDT and that was much more gentler on my heart.
Imaaan I have no idea. I do not know enough about NDT but I may yet have to find out! However I know my only option forward is self medicating with the help of the forum. I have no faith or respect for doctor’s knowledge of thyroid issues. They do not even seem to know what the symptoms are, never mind anything about the subtleties of treatment. It all seems so blooming primitive. I have always had respect for what they do in A&E. One sometimes just has to hand one’s self over. Last chance saloon.
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New test results just in!
As some of you know I am awaiting a TRH test , I have now been told it will be 24/6/13.
Thriva test results, only half received
Awaiting a thyroid test
Thoughts on test results
