Since my post from June, after initially trying to increase the T3, I had massive heart palps and sweating, phone endo on 12th July who said to leave T3 at 2.5 mcg per day and leave levo at 91.07mcg per day. He informed me the symptons I was talking about, hip pain, muscle aches etc where not thyroid related, is that ok?!! Three days later I tried to phone GP with facial paralysis, told to got to A&E, they were marvellous and diagnosed Bells Palsy, treated with a 10 day course of prednisolone. Seem to recover pretty well thankfully. I had a blood test on the 9th August 2022, 8.50am fasting (no thyroid meds a.m.), meds split accordingly the day before.
CRP HS 2.68mg/L (range 0 - 5)
Ferritin 132.0 ug/L (range 13 - 150)
Folate - serum 17.38 ug/L (range > 3.89)
B12 - Active > 150 pmol/L (range 375 - 150)
Vitamin D 128 nmol/L(range 50- 200)
TSH 9.21 mU/L (range 0.27 -4.2)
Free T3 3.65 pmol/L (range 3.1 -6.8)
Free T4 16.5 pmol/L (range 12 - 22)
TgA 13IU/mL (range <115)
TPA 36 IU/mL (range <34)
The above results as I mentioned above were 2 days levo at 100 mcg and 5 days levo at 87.5mcg plus 1.25mcg lio am and 1.25 lio at 2pm.
Two weeks later I was bed bound for a week, thought it was a blip and carried on, only for it to recur again two weeks later ... same thing, bed bound. I decided to increase levo by 25mcg over the course of a week. 4 days at 100 mcg levo, 3 days 87.5 mcg levo and keep T3 at 2.5mcg per day.
Well low an behold I have hit a wall again, my right adrenal is throbbing, my heart rate is all over the place, one minute sweating, the next cold. Massive brain fog, right hip pain and foot pain, blurry vision. I decided after the last consultation with the endo that it was to be my last with him, he really was of no help and not value for money. My GP amazingly said my thyroid was fine ... he got the same T4 and TSH result that I did privately (see above), I might add, and he did say from the onset he has no knowledge of thyroid.
I am wondering if I have a cortisol issue as I am struggling to raise T4 or T3, GP ran a full blood panel, sex hormones all fine he also ran 9am cortisol serum 372nmol/L (range 172.0 - 497.0). I think I need to order a saliva cortisol test from Regenerus, but wonder if this may give me a false reading given that I am taking T3. My only other option is to drop the T3 and up the T4 and try again adding T3
Sorry for the long rambling post, thanks in advance for any advice. x
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AleB
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Thank you SlowDragon for your response. It was literally 7 days after stopping Prednisolone that I did my blood test. Would this affect the Tsh, I asked at the hospital if it was safe to take with T4 and T3. I Googled the side effects, cortisol could be elevated and sleep disruption was likely... took 4 days of very sleepiness nights. 24h off levo and gluten free.
The above results as I mentioned above were 2 days levo at 100 mcg and 5 days levo at 87.5mcg plus 1.25mcg lio am and 1.25 lio at 2pm.
Looking at the above your TSH is far too high because your Frees are far too low
TSH is a signal from the pituitary to the thyroid to produce more hormone
High TSH = low hormones = hypothyroidism
You are under medicated which is most likely the reason for your symptoms
FT3 in particular is abysmally low at only 16.18% through the ref range
We aim to have both Free around 75% through range
These low Frees are raising your TSH which when medicated should sit at 1 or under.
Your antibodies are slightly high which may suggest thyroid autoimmune disease, a common cause of hypothyroidsm. A gluten free diet often helps
Since your nutrient levels appear fine it looks as if you need to have T3 increased in order to raise that low FT3
T3 is the active thyroid hormone and for good health must flood almost every cell in the body, this, in an adequate and constant supply... in your case this isn't happening evidenced by low FT3.
Your endo needs to understand this and to increase your T3 dose from 3.5mcg on 5 days a week which is having no discernible impact on your health
Further you are taking T3 on 5 days a week only....this is wrong! T3 needs to be taken in a constant and adequate dose....not part week!
Can you raise the T3 dose to 5mcg with 100mcg levo and try taking it once a day with your levo following the usual protocol... away from food etc
Many medics wrongly fear T3 which often causes patients misery....
You say...
I might add, and he did say from the onset he has no knowledge of thyroid.
It looks as if you are going to have to educate him.....well done to him for being honest and admitting his lack of knowledge!
Try maintaining that dose for at least 6 weeks then retest
I may not have made myself too clear, my total levo per day was at that time 91.07 per day plus 2.5mcg per day of liothyronine. This was after 12 weeks, it seems to take this length of time for my bloods to settle. I decided to increase levo by 25mcg divided by 7 days, an extra 3.57mcg levo per day. So previously levo 637.5 per week and now 662.50 per week, hope this makes sense! As both FT4 and FT3 are both low, I figured I could try raising T4 (I struggled to raise T3,), even a spec of T3 has a huge effect on my body.
When I first started this in October 2021, I was taking 112mcg levo per day, reduced by 25mcg per day and gradually was on 5mcg T3 per day... By early February it proved too much, endo added back 25mcg levo in April (did much better), but by July it proved too much for my heart!
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Dose adjustment - thyroxine. 
GP confusing me again by changing my Levo dose to match TSH guidelines
DIO1 and DIO2 Gene issues
Sense-check, Hashi Swings, and inability to lose weight 
When will it get better? 
