I have found levo sky rockets my prolactin, SHBG and makes my testosterone abnormally low.
these levels always normalise in the months after stopping levo and always worsen the higher the dose.
I have also found levo is causing severe episodes of hypoglycaemia (blood sugars after evening meal 2.5-2.7) and hypotension , these again improve once medication is stopped and are worse the higher the dose.
I am subclinical hypo (not hashis, confirmed via scan and bloods) and have found that levo/lio at any dose cause my health to severely decline. (Low blood sugars, low bp, hormone imbalance, debilitating joint and muscle pain and stiffness, muscle weakness spasms, severe fatigue, speech problems) all these symptoms always improve once meds are stopped.
Tried out dosages for nearly 2 years now and vits/mins all optimal. Magnesium doesn’t help muscle twitching.
Any ideas?
I’m starting to wonder if I have an adrenal issue which is driving up TSH and would explain my volatile reaction to thyroid medications at any doseage.
I had an am blood cortisol which was normal but I hadn’t left long enough between the test and stopping the contraceptive pill.
High prolactin is usually associated with low thyroid hormone levels i.e. overt hypothyroidism. So it seems strange that you're atributing it to taking levothyroxine. (Sorry, not much help )
Yes this is what I read too but I have stopped levo several times now and prolactin always returns to normal (mid range) when I take levo it’s high and the higher my levo dose, the higher my prolactin. So there is definitely a clear pattern there.
When I was taking 75mcg levo for 2+months my prolactin was 1500+ (it was lower on 50mcg but still abnormally high)
I had a canulated prolactin test off of levo for 6 weeks and it was normal. Anytime I test my prolactin off levo it is normal.
The higher the levo, the more all my other hormones are thrown off and I feel awful and severely over medicated. My ft4 is around 16/17 unmedicated so don’t feel that’s an issue.
It’s way to test if your prolactin levels are stress related.
They measure your prolactin and then retest in an hour after rest. Both my results were fine- so not stress related.(the only time I’m stressed and anxious is ina medical setting) and it tested fine. It’s only when I’m on levo that it sky rockets.
I remember reading through some of your past posts and you describe how you've never really had a proper period. Has your gp ever explored fully why that's the case? I think you said PCOS is the cause but have you had any further tests why?
On a previous post pituitary tests were mentioned, I'm sure a GP can do some relevant tests regarding pituitary function. I'd want to have an MRI of my pituitary also but not sure if a GP can request that or if you may need a referral to an endo.
I'm no expert just from reading around the forum and having a sister with a pituitary problem (she has a cyst) Low testosterone can also be caused by a pituitary issue so worth exploring.
I’m still on a massive waiting list to see an endo.
What’s weird is that my testosterone is only LOW when taking levo. Without levo and with contraceptive pill my testosterone is normal and without any medications it’s abnormally high.
I’m going to ask about a pituitary scan.
I saw an endo privately who recommended mixed meal test but this was £3000 so not affordable.
No one seems bothered about me having no periods. Even though I’ve tried Provera, inositol, metformin and they do nothing…
I saw a junior doctor endo in July and he was completely clueless and just gave me metformin but this just made my hypoglycaemia worse…
Yes I read this too- so would that confirm I don’t need to be taking t4?
Even taking 25mcg levo pushes SHBG too high and then testosterone too low. Without thyroid meds this all normalises. But my TSH jumps from 4-8 but my ft4 always sits happily at 16-17. I find if it’s higher I have symptoms of being over medicated too.
Ah yes I’m gonna mention this too but my thinking was if pituitary was making too much TSH surely my frees would end up sky high too and I’d have signs of hyperthyroid?
Lol. It’s so bizarre isn’t it like I feel like my body is screaming at me that there’s an issue but it’s not hypo.
I am going to push for some adrenal testing as I have high Tsh, high esinophils and kidney issues as well as high potassium and low salt - all of which seem to point to adrenal issues.
I can’t be 100% sure yet, but I do believe part of the reason I suffered with levothyroxine is because it lowered my oestrogen and progesterone. Both, by the grace of god, are appearing to come back up since stopping levothyroxine.
I thought you’ve had both saliva and cortisol cortisol test, which ruled out adrenal issues?
I can’t help but wonder if your TSH is representing some other non thyroidal illness since your free’s are fine.
I remember in other posts you mentioned your sex hormones and periods were unusual in some way, so rather than an endocrinologist you may find a gynaecologist more useful.
Hidden sorry, edited a question for you above.
Also, can you clarify, do you mean both your prolactin and SHBG increase and testosterone lowers when on levothyroxine? And, what are they higher or lower during takinnn levothyroxine?
I saw an gyno in 2021 and they weren’t very helpful.
My E and P are low/low normal even without levo.
I read saliva cortisol tests can easily be thrown off by adrenaline and given I had hypoglycaemia the afternoon/evening of my test I’m not sure it’s accurate. Contraceptive pill interferes with this also so my blood cortisol will not have been accurate either. So I’m not sure either is accurate and definitively rules it out.
Low blood pressure and hypoglycaemia are classic signs of adrenal issues. I have both.
I struggle with levo both on and off the contraceptive pill.
I don’t feel I am hypothyroid but don’t know what could be causing the high Tsh? What other non thyroiddal illnesses do that?
I know adrenal issues can cause high Tsh, high esinophils, affect kidney function…all of which I have.
I also had low sodium and high potassium off contraception before but no one took it seriously.
I am not suggesting you are suffering from stress, or even that stress may be the route of your health concerns. I feel you have misunderstood me. I have to admit, I do not enjoy being this misunderstood.
I was simply stating that any non thyroidal illness can influence the TSH, and indeed thyroid, and I mentioned stress to demonstrate how broad non thyroid illness is.
I am no expert, and while I have read this often on this forum, but the idea that a high TSH is as it’s (presumably via the hypothalamus and pituitary) “working hard” to keep frees at a decent level seems a bit odd since the TSH and frees communicate with each other. High TSH signals thyroid to work harder, usually as a result of low frees, and high frees signals TSH to stop producing more frees.
The question I would be interested in is why this communication is broken, which is probably as a result of some sort non thyroidal illness.
It’s worthwhile to note mind, that in many countries a TSH over range but below 10 is considered normal in some populations. I think Japan may be such a country.
But it’s weird cos I do have symptoms of thyroid dysfunction but thyroid medications makes them all severely worse and causes dangerously low blood sugar.
I know a TSH of 7 isn’t normal for me and is also not viable for fertility reasons too.
I have had many general blood tests and I’m not sure what the ‘non thyroidal illness’ could be aside from adrenal issues.
I’ve read a lot about other causes of high Tsh- most common is adrenal followed by inflammation/immune system issues but I’ve had all the bloods for inflammation and they come back fine. TSH is persistently too high so I’m struggling to think what illness could be ongoing for 2+ years.
Have you had TRAB blood test? Perhaps you have blocking and stimulating antibodies circulating at the same time.
Just a wild guess.
The problem with thyroid and especially in thinking about a non thyroidal illness, everything is affected by the thyroid and thyroid affects everything too.
As for pregnancy. I would hazard a guess that many women have had safe pregnancies with dysfunction in thyroids. Unlike iron, it’s not routinely tested so we’d never know.
I haven’t because I don’t have signs of hyperthyroidism. I had TGAB and TPO tested and are always negative, my thyroid looked ‘pristine’ on the ultrasound too.
I thought thyroid and iron are routinely tested during pregnancy? Especially if you have symptoms.
No doctor I have spoken with recommends a pregnancy with unmanaged hypothyroidism, subclinical or otherwise. It carries alot of risks for the baby. It’s not a risk I’d be comfortable taking personally which is why it’s important to understand the cause of my high TSH/symptoms and why levo makes it all worse.
Low testosterone and abnormally high prolactin is also bad for fertility and pregnancy so it doesn’t seem as straight forward as just taking the levo.
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