If you don’t have hypothyroidism but have persistently raised TSH - what are other causes of this?
I have read so far it can be caused by adrenal insufficiency, inflammation, immune system problems.
Is there anything else?
Anyone else find their raised TSH (normal ft4/3) is due to something other than hypothyroidism?
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Contraceptive pill... so you might think any sex hormone imbalance could have an effect?
I’ve never had sex hormones that function. I’ve never had a natural period but raised Tsh has only become an issue in the last 2/3years 🤔
Problem is without contraceptive pill I am severely unwell so don’t think stopping it is the answer. 
But levo/lio gives me raging episodes of low blood pressure and hypoglycaemia so that doesn’t seem like the answer either. These episodes are significantly worse if I try stopping the pill whilst on thyroid meds.
It’s all such a mess…
not sure if either of these apply if T4/T3 are 'normal' , but might be worth bearing in mind:
? Thyroid Hormone Resistance .... the genetic forms of this present with normal or high TSH at same time as high T4 and/or T3 ~ (TSH production in pituitary is not supressed by high T4/T3 levels because the cells are less affected by thyroid hormone). but it's hard to generalise about thyroid hormone resistance because there's lots of different presentations of this, and some of it is not understood yet .
? TSHoma ~ tumor in pituitary continuously producing extra TSH even though T4/T3 levels are sufficient, presents with normal /or raised TSH at the same time as raised T4/T3.
Thank you for your suggestions.
I don’t think I have thyroid hormone resistance as my TSH does respond to thyroid medications and reduces (and t4/3 do increase) but it gives me hypoglycaemia and low blood pressure along with a whole other host of issues.
I don’t think it’s TSHoma either as when my Tsh is raised my t4/t3 levels are not abnormally high just what they usually are. I feel like my TSH is raised in isolation to everything else 🤔
Pituitary adenoma? Long shot—but not impossible.
I had a brain mri and my pituitary looked fine. My other pituitary hormones are ok.
My TSH is raised in isolation it seems. I’m guessing if it was adenoma then t4/3 would be abnormally high. (My hormone levels are always around where they were when I was well)
Thank you though!!
Fair enough. Though I can’t help think there’s a link to your sex hormones—which would potentially still make it some kind of pituitary situation.
Could be a tiny tiny adenoma. Did they do the full works with contrast dye when they did your MRI?
I do have issues with sex hormones but going on contraceptive pill helps me manage this. Sex hormones have been an issue for me since my teens but I’ve managed ok until the last 2-3 years as these other issues still persist. I suspect I possibly have an adrenal issue or possibly late onset adrenal hyperplasia…but it’s hard to get an endo to listen and do the testing.
No contrast. Just had a head MRI but they won’t do any other scan.
Gosh. Even a private endo? So sorry your having this experience.
Private endo has sent me a list of what he feels warrants testing but o can’t afford it all. Nhs are stalling on doing it…
Ah. Are you seeing both a private endocrinologist as well as a NHS one?
Is there any way you can get a medical type loan to cover the costs of ten tests the private endocrinologist wants to do? I sense you’ve reached the point where you need answers and clarity that only data is going to give you… hopefully.
GTS,
I have come to the realisation that the antibodies tell a story. What that is I am not sure. So, perhaps, if you’ve not had TRABs blood test, it may be worth checking in case you have blocking antibodies (although TRABs are not specific for just blocking). If that’s the case, and if you do have other thyroid antibodies, you may benefit from an autoimmune approach such as using LDN.
Just a guess. Not based on any science that I know of.
In answering your question, I have found that no one has all the answers when it comes to the thyroid or the endocrine system. It is not an area that has benefited from adequate research. So, unfortunately, all we know for sure is a non thyroid illness can mess with your TFT results. So , it’s plausible you may have something else going on in your body somewhere, that is causing a secondary issue with your TSH levels.
I assume you have ruled out any other medications or supplements causing this.
Hope that’s helpful.
From what you have said, I suggest something interfering with the test.
helvella - Factors that interfere with thyroid tests
A summary of factors known to interfere with thyroid tests.
helvella.blogspot.com/p/hel...
Thanks for the link. I’m not taking anything in that list or anything else that can interfere with the test.
My results are the same on and off the contraceptive pill also so I know it’s not the estrogen in that. I’ve taken the pill for sometime and never had it increase my Tsh so I really don’t think that’s a likely explanation.
Have you excluded macro-TSH?
Sorry I don’t know what that is?
There is an abstract and a link to the paper in the blog.
(It isn't just a list of other medicines, supplements, etc.)
Interesting. Just had a quick read and google. Seems as though macroTSH os often associated with no symptoms.
I do not feel well. I struggle with episodes of low blood pressure and sugars which get significantly worse when thyroid medications are given. Which is why I still question adrenal issues as I read this can often be misdiagnosed as SCH and symptoms can be similar.
Yes - macro-TSH itself seems pretty insignificant except inasmuch as it affects TSH assays.
Yeah I’m not sure it fits then …unless there’s something else going on ofcourse. Bodies are complicated and annoying!
It just could explain the changing TSH results.
But what causes macro-TSH to rise and fall (and, consequently have varying impacts on tests) could be something else - which just happens to be what actually cause your issues!
macro-TSH tends to get ignored.
Mad that’s it’s just ignored when clearly anything to do with thyroid is v unique to the patient (and sometimes complicated!)
Hi Green Tealseal
Just a long shot but have you ever had calcium and parathyroid checked?
I found when I was on levo t4 , which was by far the worst thyroid medication I've ever been on my menopausal symptoms sky rocketed, this medication some how re animated my menopausal symptoms 🤷♀️ and I felt that something in the medication was interfering with my sex hormones, obviously I'm different in the fact I'm going through the change I'm now 62.
But before I lost my thyroid my menopausal symptoms were mild at best, they went haywire on levo
I'm now of all synthetic hormone and on ndt ( natural dessicated thyroid) and those hightend menopausal symptoms have gone🤷♀️.
I also had adrenal issues on levo to , I do feel somehow t4 did something to my sex hormones though.
That’s really interesting Birkie. When I was diagnosed with Hashimoto’s 10 years ago I was started on Levo. By the time the dose was titrated to 150mcg, my menopause symptoms disappeared!
Thanks for suggesting! My calcium has always been normal (mid range) so I guess no one’s thought to test parathyroid.
Could you see that levo was interfering with sex hormones in your bloods?
Cos for me any thyroid meds send my prolactin and SHBG sky high (which surely indicates over medication) and as a result my testosterone tanks. This all normalises once the meds are stopped. But I then have other long standing hormone issues since my teens which have resulted in me never having any periods.
I tried all last year to stick with thyroid meds (levo only, lio only, a combo) but they all messed me up in the exact same way no matter the brand, dosage etc. I haven’t tried NDT but do wonder if as my t4 is mid range+ and t3 also mid range it will just cause the same issues plus it’s so expensive so I’m reluctant to trial it without ruling out other issues first
The problem is no one has been able tp accurately test my cortisol levels as I’m on the combined contraceptive pill so I guess next steps are coming off that and trying to get a Synacthen.😬
First my cortisol was very low on t4 levo, I had that synacthen test and it just said borderline, grey zone 🤷♀️ but no further action required, some say the best test for cortisol is a saliva test as the synacthen stimulates the adrenals to produce cortisol , I was unsure about that test.
As for the sex hormones and levo, my symptoms of the menopausal were minimal I really didn't suffer much, then my thyroid was removed and I went on to levo I started to notice electric shock sensations in my legs and arms then I would flush then sweat profusely.
Obviously I sweated a lot when I was hyperthyroid [ graves disease] and had bad tremors but all that stopped when my thyroid was removed, so I was perplexed when I again started to sweat bad after about7 days on levo [ I was not over medicated] unfortunately the synthetic hormones t4,t3 never worked for me because I also have reactivate colitis and I'm lactose intolerant I just couldn't stomach the stuff.
But now 9wks in to my 10thwk...all the gastric side effects have gone and the sweating and the weird electric shocks are diminishing, obviously this medication is what I need, but we're all very different.
But what specialists and gps should understand is thyroid medication is hormonal and it could have an effect on other hormones in the body 🤷♀️
Oh gosh sounds as though you’ve really been through it!! Good t hear you’re doing better now on theNDT (it’s on my list of things to try as a last resort for sure!)
Interestingly I never had my blood cortisol tested whilst on levo but it’s not possible to get an accurate reading if you take the contraceptive pill so I guess I need to trial stopping it to definitively rule out adrenal issues.
I did a saliva cortisol but in my opinion I’m doubtful about the accuracy tbh. I had read somewhere that it’s very easy to throw off the readings and things like adrenaline can falsely raise your results. When I did my test I had a huge hypoglycaemic/low blood pressure event and couldn’t get up from the kitchen floor so feel like that massively skewed my testing! 😬
How annoying they just declared you in a grey area for the Synacthen!!
Hashimoto’s can result in high TSH and normal T4/3. Anti-TPO antibody: A blood test that checks for antibodies that attack the thyroid gland. High levels of these antibodies indicate Hashimoto's disease is causing hypothyroidism.
I don’t have hashimotos. My antibpdies are low normal as is my thyroid ultrasound . They’ve been checked a few times now are never raised so it’s definitely not that 
thank you tho!
Makes me think of AIP Type 1 which can cause subclinical hypothyroidism " elevated tsh and normal t4" along with low blood sugar. AIP Type 1 can affect a lot of organs. My blood sugar is often low, down into the 60's every morning. I am hypothyroid. I do the 15/15 rule. Eat 1 banana for 15 carbs and check my blood sugar 15 minutes later which is in the 90's to 100 range. AIP Type 1 has been mentioned as well as type 1.5 LADA diabetes. I haven't been tested for either since it isn't troubling me "yet".
I’ve been reading about LADA and wondered if this could be a factor but I’m not sure as my hba1c and am blood glucose are normal.
I was given metformin earlier this year to ‘try’ and it just gave me constant hypoglycaemia and I felt permanently ill.
yes I believe there is I got very ill undiagnosed but huge symptoms high tsh 4.7. Immune? Inflammation yes I had much and ongoing problems. Suspected myasthenia still awaiting diagnoses but wonder also of other possibilities, myositis , myelitis? I don’t know my tsh currently but I personally think there’s a link and currently investigating myself as docs ignoring this . How’s your ferritin? Are you having any inflammation or immune symptoms 🤷♀️ it’s a minefield
It’s so weird isn’t it!? I suspected myasthenia in myself too but the fact that my symptoms go away when I stop taking levo/lio makes me question that. I attribute a lot of my symptoms to low blood pressure and low blood sugar (which drastically improves when it’s all stopped but still happens, just less severely and frequently)
My ferritin is good I’ve actually been working on keeping all my vits and mins optimal for that last year but have sadly noticed no improvement in symptoms
can I ask what symptoms go when you take lego? do you have ptosis? I had high tsh which was lowered after high dose steroid though I currently dont know my tsh now. I understand that thyroid issues can come along with myasthenia but I dont take lego and its weird if you are worse on levo than not ?🤔
I read your struggling symptoms which I have plus urinary and skin problems breathing etc. it's interesting as my private bloods and tsh 4.7 have always bothered me in my undiagnosed state. hydroxychloroquine given for palindromic rheumatism and when they were stopped arose my major health problems. was it them being stopped? was it due to them? high dose steroids helped somewhat ? not immediately other than in bloods and its been a long time to ease or is that whatever I have easing and still get flares. ptosis for six years and atrophy of right arm same side as ptosis getting worse.
Gosh I’m sorry you’re having such a rotten time. You should totally be able to trial levo to see if it helps you!! 🤞
dont think I need it as I say steroids lowered it, at least it showed to in a docs test, I guess I should get another private test to check it when funds allow
I don't have anything to add, but I would also like to know myself . Are there drugs like NSAIDS and others things that may affect TSH ?????
helvella blog post shared above goes through all meds that can affect readings
its weird the things ive read that can affect tsh even back trouble and the suppression of nerves I have read 🤷♀️ people ae looked at as tests most of the time and not the whole picture maybe
I have to wonder if after my experience it is related to cortisol levels being elevated, and the hormone disruptors in food additives and the pesticides in our foods, ground water and in the air. The there is also the effects of Soy and it is in absolutely everything . There is a great site I found online where it is listed all the places soy is and additive names for Soy !
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Pregnant and raised TSH
GP says increase Levothyroxine from 75mcg/day to100mcg BUT T4 level 14.60pm is OK (12.0-22.0)although TSH @ 18.60 mU/L is raised (0.27-4.2)?
Reason for raised Platelets?
Raised Ferritin levels?
Why is tsh test the only one used?
