Hi I've been taking t4 100mcg + t3 10mcg daily for at least a year now and fairly stable but still struggling with weight, dryness, irregular light periods and after football which I play twice a week when not in lockdown I really struggle with fatigue, brain fog and slow recovery from DOMS and sore hip and knee joints (gradually gets better when I don't play like in lockdown). I have regained at least half the weight I lost when I started thyroid treatment despite being more active and it is all very central. I do also have pcos but can't tolerate metformin, inositol or hormonal contraception treatments. They make me gain more weight.
My cortisol has been slightly elevated for a while
May 2018 544 (113-456) - 2 endo's said normal
July 2020 616 (113-456) - Current endo said normal
Dec 2020 645 (113-456) - not told endo yet
I've had a normal 24hr urine but apparently medichecks normal range is quite high and my result (147) would have been high on the nhs range of <120. Not sure how true or relevant that is.
Ive also had a normal 24hr cortisol which actually showed borderline low in pm.
My prolactin is also raised
July 2020 1627 (102-496)
Dec 2020 1377 (102-496)
Endo was very dismissive of my prolactin result. Told me not to go testing for things.
My Dec 2020 thyroid results are:
Tsh 0.02 (0.27-4.2)
T3 6.68 (3.1-6.8)
T4 19.3 (12-22)
These were roughly 9-10 hours from my last dose.
I should also mention I started with covid symptoms 2 days after these bloods were done and tested positive 5 days after.
I have a private consultation booked with an endo who is supposed to be very good with pituitary issues next week. But I don't want to waste his time or my money if it could all be due to being overmedicated on T3.
Thank you!
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Salphy
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I think I can imagine why endo is dismissive of prolactin result - sort of.. apparently prolactin is very reactive / unstable. An endo told me this when I had high prolactin. As I have a non-functioning pituitary adenoma (details in profile) they test mine annually. Drinking more in lockdown would spike it, apparently. Don’t ask me how I know this... 😳
Hahaha I won't but I don't drink so he can't use that excuse... not that he even asked lol.
Is your prolactin consistently elevated? I have had 2 raised results within 6 months and my cortisol is gradually getting higher too. I really don't want to waste anybodies time or money, but I just feel unsettled and struggling to accept that they are normal. What is the point in the upper range if it doesn't mean anything?
Do you know if taking t3 has had any impact on your prolactin levels?
Ok - good to take that one out of the equation, then! I recall feeling quite snappy and unbalanced when mine was elevated; could be coincidence, mind. Mine fell back to normal range for the next test. My comment about prolactin aside, I’m afraid I don’t know about the rest... hopefully someone knowledgeable will be along to help on thyroid levels. Your symptoms sound a lot like me in terms of thyroid issues, DOMS, joint pain, but our hormone levels are very different; I’m borderline low on T3 but hopefully moving in the right direction, as the NHS have finally prescribed...
I would keep asking about the prolactin, though. They don’t do anything until it is consistently really high. What is classed as “really high” I don’t know, mind, but the fact that you are consistently over - and don’t drink - definitely mention that! - ought to be of interest. I was well over range, but just once.
Thank you. I am a lot better than when my levels weren't optimal and pre t3. But just still have persistent symptoms.
I didn't get the doms or achey joints at the time, but I guess that could also be that I just didn't have the energy to even contemplate doing exercise intense enough to cause it.
No - I wish I had the number! He also said “we don’t pay attention until it is consistently above x” and I desperately wish I could remember what x was for you, but I remember thinking x was massively over range, so much so that maybe they’d want to change the range... With my exercise stuff (again, in profile) GP wanted to rule out other AIs, but couldn’t, which is how we landed on T3. (Edited to add the “consistently!”
Yea I've seen some say things like 2000-3000. Which is crazy numbers when the upper range is 496.But then also lots who have had prolactinoma's when in the 1000s.
Then they tell my my cortisol was normal at 616. 160 over upper range.
Yet they seem to really like to remind me that I have pcos confirmed by my high testosterone.
Which is 1.76... a whole. 0.09 above the upper range of 1.67.
Doesn't make any sense!
I just can't find much on having both raised cortisol and prolactin together. Which is what made me wonder if it could be the t3 or something.
But I also dread to think about them taking me off it!
I feel out of my depth with only a non functioning adenoma of my own (!), but adenomas can function in more than one direction and raise cortisol as well, I believe. They certainly tested me for cortisol back in the day when they found the thing by accident. That having been said, I’m not sure it would cause your symptoms, but again, confess to being out of my depth. By the way, you must re-post if you don’t get more responses; I am worried people will see the number of responses (from me) and assume the issue is closed when it isn’t! They diagnosed the adenoma with an MRI. There are a few on here who have them and there was a thread recently, I believe about prolactin...
I had low cortisol. However, when I introduced T3 medication to my already Levothyroxine dose, my cortisol blood results shot up and are now good from being below range. Your T3 blood results are pretty high considering you left a number hours before your test. To me it looks like you need a slight reduction with your T3 medication. Do you split your dose throughout the day. I take mine twice a day 7 hrs apart. You mention you tested positive for covid shortly after these tests. Remember that cortisol is our own steroids and that if you are unwell that our steroids boosts to support you through illness. It could be a mix of cortisol raising to help boost your immune system and that you are on slightly too much T3 or do not spread it out throughout the day. T3 lasts about 8hrs and has a short half life of 2/3 days. What time of the day do you take it. Do you get more tired etc about 10 hrs later.
Hi I normally take it as a single dose (half a 20mcg tablet) first thing in the morning.I was advised for my blood test to split the dose the day before. So I had 1/4 first thing then 1/4 at night then did my test the following morning before my next dose.
I always get an early afternoon dip. But not as bad as when I don't take t3, then I have to have an afternoon nap. But that's usually only about 4 hours after taking my t3 then I seem to get a bit more energy in the evening around 8-9pm.
I was considering reducing my t4 to see how that helped. Because I used to take 6.25mcg t3 but was sleeping a lot and felt it wasn't enough.
I've been on 10mcg a while and been around the lower end of 6 and quite stable. This is the highest it's ever been. Could covid cause t3 to raise?
You could be getting a dip as your T3 peaks after about 4hrs from the time you took it. You can get what feels like a dip when you are over medicated or over range during the peak phase. Well that certainly happens to me. At first I was confused as to why I felt so weak the same as under medicated. I had a blood test during a big dip snd it was over medication. I don’t know why this happens exactly. For me it feels suddenly like I’m trying to drive with the handbrake on full so to speak and dragging myself and feeling of heaviness. After the peak drops I then feel fine again. I think you’d be better off taking 5mcg twice a day leaving 7hrs in between. You’ll be getting a dip as it’s running out snd you need to have a second dose This is what my private Endocrinologist explained to me and it works well, especially if you are a poor converter, it makes sense really. I don’t know anything about covid I’m sorry snd what effect it could have.
What time was your cortisol test done? If it was around 8-9am then it is quite high but not badly so. It is consistent with high prolactin as well. It does suggest that you may have a pituitary issue, especially with the symptoms you are describing. The central weight gain you've mentioned is typical of too much cortisol, are you having issues sleeping? A pituitary adenoma can secrete excess prolactin & ACTH, which is the hormone which stimulates the adrenal glands to produce cortisol. It certainly needs further investigation, can I ask who you are going to see (probably best in a private message) ? Have a look at Cushing's syndrome to see if you recognise yourself in the symptoms. I run a FB group for people looking at Cushing's or diagnosed with it, I've had Cushing's due to a pituitary adenoma.
Hi Pauline yes I am on your group thank you. I can't remember his name but it is someone recommended in the group. A prof from St barts but it is a telephone consultation as I am in North West.
I don't sleep too bad. I tend to get more energy late at night and it can take me a while to get to sleep unless I've been busy and I'm really tired. Then I'm up a few times a night to go to the toilet but I drink a lot of water because I get dry mouth and have post nasal drip.
But I would usually sleep about 10-11 hours left to my own devices on a day off.
On a work day I do need to start making an effort to go to bed earlier. I normally go about 11pm, probably takes an hour for me to get to sleep then up at 730.
I'm alright once I'm up but dip early afternoon then my family have always said I come alive in the late evening lol.
The test was done at 8am.
I just wanted go ask on here about the t3 in case that's the issue I don't want to waste the endo's time. I thought maybe that could be why my endo is not concerned but just didn't say it.
I did ask on the fb group if anyone was on t3 but didn't get a reply x
When you have high prolactin, it can mean your dopamine level is low. Dopamine is a happy brain chemical. Low dopamine can cause mood issues, brain fog, fatigue.
Look into the relationship between dopamine and prolactin, dopamine and PCOS, dopamine and cortisol. Just a brief search and I'm finding a lot of relationships.
Also wondering what hormone you were on that caused weight gain - you may be estrogen dominant, and that can cause PCOS. PCOS can raise your cortisol. Raised cortisol lowers dopamine. You may need more progesterone ?
All of these seem to be related somehow.
I would focus on the pitutary/hormonal issues with the endo, I wouldn't mention about T3 on the high end or they may lower your dose! They don't know about dopamine either.
Thank you. My heads mashed with it all at the moment lol. My endo is arranging further testing of macroprolactin and a 24hr urine cortisol test so hopefully have some more answers.
It was the metformin that made me gain weight. I was really bloated all the time. I haven't been on any hormones long enough to notice a change in weight as they trigger migraines for me. I can't win lol.
I'll have a look at dopamine. I think I read something that mentioned dopamine and pituitary.
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but I don't drink so he can't use that excuse... not that he even asked lol. 
How fast to raise T3 only
High Cortisol blood test
Endo wants me to reduce T3 and raise T4
Low T3 Low Cortisol - bloating / fluid retention
Considering self medicating looking for advice based on my bloods please 
