Hi everyone, I need some help. I am newly started on T3. Finely got to see an endo 7/9/23 and he said my T4 was too high and my T3 low. I have never been well on T4 and was diagnosed with ME/CFS. I have been on T4 for 20 years. I also had low B12. I self inject for that. I have enlarged red blood cells. I also have low cortisol mornings and day time, just scrapping at low end of normal by late afternoon, early evening and nighttime. My blood pressure is 84/56 very low. Been checked for Addisons and it appears I do not have this. Although I have not had a STIIM test.
I saw endo 7/9/23 and he put me on 10mcg T3. He cut down my T4 from 100mcg to 50 mcg. I felt I was getting somewhere for the first 2/3 weeks. All my gallbladder and tummy pains went. I use to be so sick after I ate anything. I lost a lot of weight and I was slim to start with. My brain felt clearer, although still fatigued my brain was telling me that I will be able to do things whereas before walking to the corner of my road you might as well be telling me to walk to Scotland. The ridges in my nails started to get less. I actually feel morning hunger pains. Have not felt them in 20 years. I can now eat more or less anything with no gallbladder pain. My numb feet and toes have started to feel less numb. I wiggle my toes on my sheet when I get into bed now, it is so strange to be able to feel something. Still have bad ataxia so I am more or less housebound.
Endo said I needed a blood test 6 weeks later. I had this done on the 18/10/23. No results back yet.
For the last 2/3 weeks, my body temperature is dropping low. Morning is 35.1 before T3 it was 36.5. My hair has gone really dry and brittle. It is breaking off every time I brush it. It is getting even thinner. Before I lost a lot of hair, it was going thin and falling out. Diffused all over my head. My fatigue is getting worse and I am sleeping poorly too. Just can't seem to fall asleep at night. It is taking me 2 to 3 hours to get to sleep, sometime 4.
Reading about T3, it appears my endo is treating me like T4 i.e. having the blood test 6 weeks later. Apparently T3 should be going up in small increments every 2 weeks. My blood tests seem really weird to. I will put them below.
My last lot of blood tests below, latest ones not in yet, sorry no ranges in the letter I got from hospital showing my results:
May 2023 on T4 only - TSH 3.2 - FT4 22 - FT3 3.5
September 7th on T4 only - TSH 0.45 - FT4 27 - FT3 4.4
These results for me seem weird being on 100 mcg of T4. I did not take any thyroid medication morning of tests.
Thank you for your help.
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Katherine123
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Hi people will be along in a minute who know more than me. But I just wondered how your ME/CFS started. Most people's start after a viral infection and symptoms appear suddenly. Is that what happened to you?
Yes, after a viral infection. I since found out that I keep getting reactivated Epstein Barr and CMG (strep B) virus. It has been especially prevalent the last 2 years.
I think Dr Sarah Myhill has started to go down that road. I am well aware if I have to take antibiotics I go down really fast. I am suspecting the gut has so much to do with it too.
On a different note Everywhere. I just read your post on migraines. I use to get terrible auras. I started to take high dose magnesium malate and they went. Poof! Gone! And I use to get them 2 or 3 times a week!
I have to take high dose 800 mg a day. Apparently I am someone who burns through magnesium fast and I do not absorb it well at cellular level (showed on a hair mineral test).
I now take 400mg of malate day time as it is good for energy especially for CFS. I also take 400mg of magnesium glycinate in the evening to help with sleep.
That’s very interesting information about absorption of magnesium at cellular level. I recently had magnesium tested in a hospital setting and it was found to be way over range even at only 400 mg a day.
Whatever it was doing, it seems it wasn’t doing it in the cells.
Similarly, I had a B12 serum test which showed my B12 levels at 2x top of range - although I’d been taking only 100 mcg a day for 6 months.
It makes me wonder whether there can be generic problems with cellular absorption, irrespective of the medicine/vitamin/mineral in question.
I agree. I am the same with B12. I had high levels in blood but it was pooling and not get into cells. It caused me terrible nerve damage, ataxia and enlarged red blood cells. I self inject B12 now and it is a game changer for me. I am wondering if a lot of people with CFS are empty of nutrients at a cellular level. Minerals being the most prevalent one. I have just started to take mineral drops as per Morley Robbins magnesium protocol.
I was getting no luck with NHS even though my red blood cells were enlarged. Dr Chandy of B12.org took me under his wing. He looked at 15 years of my blood tests and told me I am B12 deficient and to start self injecting every day as I was so ill. He also diagnosed that I had been left undertreated on 50 mcg of Levothyroxine for 15 years. So he had me up it to 75mmcg and then 100 mcg. He also diagnosed low cortisol for being so under medicated on Levo. I took cortisol supplements.
Were both the blood draws for these results done at the same time of day? Have to ask that just to rule it out, but it looks like your TSH has dropped because your FT4 and FT3 have risen. Perhaps absorption has improved somewhat? Have you changed the way your take it?
In any case, your FT4 is still too high, and you're still a poor converter. And now you're on T3 so it doesn't really matter what happened in May and September, the important thing is your next blood test results.
Very few endos really know how to dose T3. Ideally, yes, you would start on 5 mcg and increase by not more than 5 mcg every two weeks until symptoms have gone. But, they don't like prescribing T3. They don't understand it and they're terrified of over-dosing. They rarely understand the need to keep increasing until you reach your sweet-spot. But, it is right to leave testing until you've been on the same dose for six weeks.
When you test, be prepared for a suppressed TSH, which he will probably freak out at. And don't forget to leave a gap of 8 to 12 hours between your last dose and the blood draw. Tell him that you felt so much better with starting T3 but now you feel you're ready for an increase in dose. Whatever you do, do not tell him it's stopped working!!! He would take that to mean it's not the answer to your problems and withdraw it.
I understand Greygoose because my natural inclination would be to tell him I felt really good on it for 2/3 weeks and now it does not work. I am even getting the pains in my feet, ankles and knees now which is always a sign that I am underdosed. Gosh knows what I will do if he does not up it. Both those blood tests above I made sure I did not take my T4.
My latest blood test was last Wednesday 18th October. I did not take any T4 or T3 before them. I am waiting on results. Both those tests were done before 9.30am as they included an early morning cortisol blood test in with them.
Also HB was 132 - MCV 108 - ALT 128 - Cortisol 391 - LH 42 - FSH 92 - oestradio less than 18 - prolactin 122 - HbA1c 43 - ACTH 3 - IGF-1 65 and vitamin D 174. Not sure if you know what these mean greygoose. I am sure they add something to the picture the endo was looking for.
Please add reference ranges to results....the numbers in brackets.....edit, sorry, just noticed why!
I would suggest the endo didn't initially need to drop T4 and you should have been advised to add T3 slowly.
Increase T3 by no more than 5mcg daily.( sometimes less).. every 2 weeks.... (only up to 20mcg.) Test 12 hours after a dose
And....we only change one thing at a time.
Your poor body must be reeling after 2 big changes!
Not unusual to initially feel better after adding T3...the body is pleased to have the T3 so symptoms start to ease but if not enough it calls for more as symptoms return.
The 50mcg Levo would have produced less T3 by conversion than the 100mcg causing you to be undermedicated...even if conversion is poor it would still be adding some!...hence the symptoms.... because you are now undermedicated and need more T3.
High FT4 with low FT3 indicates poor T4 to T3 conversion
I suggest you need to increase your T4 back to 100mcg and add only 5mcg T3 for 2 weeks before adding the other 5mcg.
Adding T3 reduces both FT4 and TSH in any case
Refuse a dose change unless FT3 is included in test.
You will need to reduce levo in time but I'd suggest not until your FT3 is a bit higher.
Like you I was on T4 for over 20 years until I could barely function.....then I arrived here and started to "dig".
It's all in my bio...
The key was cellular T3!
I think you know more than your endo!!
Post your new labs and we'll have a better idea of what is going on.
Test at 9am, after at least 6 weeks on a steady dose, at least an hour away from food and drinks and with a gap of 12 hours after T3 and 24 hours after T4
Take care.... and insist T3 is working otherwise you might have it withdrawn. It terrifies ill informed medics and they will jump at the chance to do so!
DippyDame that makes so much sense. I am going to go back to a 100mcg T4 now I have had the blood test. I cannot lower the T3 as it is capsule not tablet I am so grateful for all the knowledge people have on here.
Cellular is indeed the key. I did a hair mineral test about a year ago. Magnesium sky high which means it is not getting into cells. Although I take daily magnesium otherwise I get migraine auras, without the headaches. I have no heavy metal problems. Salt was sky high too. I am a very poor converter at cellular level. I am coming to the conclusion that all these blood tests do not mean much as our body try to keep everything in balance by robbing our cells, bones and teeth of the nutrients we need. Whilst we are starving at cellular level. I have now started to take mineral drops.
As soon as I get my new lab results I will post them. How do I find your bio/back story on here DippyDame?
Yep it’s easier than it sounds, gently squeeze and pull apart over the glass as some powder inevitably drops out, give the wider end a gentle squeeze and shake, then the narrower end until it looks like halfish left. In mine most of the power is packed tightly into the narrow end. Pop ends back together and put in next days pill container, swirl the glass and drink up. 🌱
That’s likely too much of a reduction and likely now have low Ft4
We see this frequently that dose levothyroxine is reduced too much when T3 is added
which brand was 100mcg and which brand is 50mcg
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
I am on same T4 brand Accord but now it is 50mcg Slow Dragon. I cannot take Teva. I do have 25mcg Wockhart here and wondering as I can't reduce T3 dose as it is capsule. Perhaps I could take 50mcg Accord and 25 mcg Wockhart. I take them before bed as I could not function at all when I took them in the morning. Took me 3 hours after taking T4 to try and get moving. I felt so awful. Taking it at night helped me somewhat not to have that awful hangover feeling in the mornings. The T3 I am taking in the morning. Wondering if I can take T3 at night too SlowDragon.
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I am so grateful for all the knowledge people have on here. 
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