Hi, I asked for a referral to hospital because I have to alter Thyroxine every 8 week. Been underactive 30 years, I have now been told that my last few blood tests show I am on enough Thyroxine but my pituitary reading is too high. Consultant said my pituitary is faulty, he sent me for a lot of blood tests and said dependant on the results I may have to have some imagery done. Has anybody got any I ideas what is going on, I'm worried sick,
Thank you
Sorry, but what do you mean by 'pituitary' reading?
Do you have a copy of your last labs that show you're on enough thyroxine?
And, when your say you have to 'alter' thyroxine every 8 weeks, do you mean increasing or decreasing?
Hi thanks for your speedy reply, think I have high TSH reading but Consultant said I am on enough Thyroxine so he said doesn't make sense, Consultant said the these results were present on all previous blood results I had done at Gp surgery. I'm increasing then decreasing, getting symptoms of over or under about every two month. I don't have any of my results, the consultant has them. My Gp would say I need to increase but my symptoms were showing it was too high. The consultant is now saying he thinks there is a problem with my pituitary
How much thyroxine are you taking? And, why does your endo think you're taking enough if your TSH is still high?
Ring the endo's secretary and tell her you want a print out of your results and ranges. If you are in the UK, it's your legal right to have a copy. They belong to you!
What symptoms are you having that suggest your dose is too high? We have to be careful with symptoms, because so many of them can be due to both under and over-medication.
Sounds like you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies.
How old are you.
Thyroid levels often change around menopause
Do you have any recent thyroid and vitamin results?
How much levothyroxine are you currently taking
Do you always get same brand
What vitamin supplements are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels if not been tested recently
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Also vitamin D available as separate test via MMH
Or alternative Vitamin D NHS postal kit
The body likes a stable dose. Changing dose every 8 weeks would just add to the imbalance that is already there.My advice would be to get your blood results so you can track what is going on. Learn from the experience of this website and its members.
That's what set me on the right track.
Sometimes the TSH assay can give false high readings due to antibody interference. Get hold of your results and post them here. Your endocrinologist should speak to the biochemist and get a test with a different assay to confirm the TSH results are correct.
My guess is that he thinks your TSH readings are not making sense to him. As SlowDragon says, this is usually indicative of Hashimotos, which is autoimmune thyroid disease and can cause TSH to bounce about.
Very rarely, it could be a pituitary adenoma (I have one - you can read a bit about it in my profile - rest assured, it is boring!) which is a BENIGN (sorry for caps, but v important because I don’t want to scare you!) growth on the pituitary gland. This can sometimes interfere with the production of pituitary hormones, such as TSH. So, I wonder if he is thinking of this.
But it is far more likely that Hashimotos is the cause of the random spikes in TSH than a pituitary adenoma, because Hashimotos is far more common! And even if it is an adenoma then please do be reassured that mine is so utterly boring that I’d go as far as to say that I’d consider wishing him (he’s called Brad - I figured we should make friends) on every thyroid patient who wants one, so that they at least get a yearly chance to talk to an endocrinologist. You see, they come with a free chat with an endo every 12 months. But you do also have to wave at them on a brain scan once every year or so. It’s been quite helpful for the hypo, but I don’t like the scans much.
I’ve never been actually diagnosed as Hashimotos by the doctors - did it myself as the quacks weren’t interested despite the adenoma!- but I’ve only ever had high anti thyroglobulin. I’ve recently had a pretty spiky TSH result, so I wonder if my Brad has more to do with all of this than I’d given him credit for. Whilst getting diagnosed with him was incredibly scary, the endo appointments are a definite upside and I’d go as far as to say that I might actually be glad to have him rather than not, because I am finally getting somewhere with thyroid medication because of those annual endo appointments.
Brad is very well behaved. I give him headspace, he gives me access to endos... It sounds like a good deal to me.
Best,
Lotika.
Hi Everyone, what a fantastic forum, Consultant said he was going to check antibodies, there were lots of tests done (bloods). I am 56 and going through menopause, but I've had to mess about with my Thyroxine for 30 years, my GP said my TSH was high so I needed more Thyroxine, even though my symptoms were over, now I know it could not be to do with my Thyroxine.
Yup, I hear you - you know how YOU feel. Glad he is testing the antibodies. By far the most likely, I’d say. Not an expert, mind, just a patient!
Just on this, I found the following: yourhormones.info/endocrine...
So, highly unlikely you have one because it causes HYPER, not HYPO symptoms. So, you wouldn’t be on thyroxine with one of those babies, I reckon. It probably also means I can’t blame my Brad for my TSH spike, but there we are. I hope you feel calmer 
lol Brad the Boringoma !
Docs have names for odd adenoma's too , if they find one by accident on a scan while looking for something else they call it an 'incidentaloma'
Yes i'd quite like a Brad if he came with a free Endo ... i'm fed up of being not exciting enough to look at in any detail , i can't even get anyone to feel my neck let alone do a scan.
Cazianne , Hi i was hoping someone would come along and explain better than i could, but as jimh and lokita say there are several non-worrying reasons why TSH may either be high, or appear to be high.
Often all it means is once they've figured out why it's being 'unreliable' they'll ignore the TSH in future and dose your thyroid replacement hormones by looking at you fT4 and fT3 tests ... which is what every one here wishes they would do anyway. So hopefully your dose will stop being messed around with, which will help.... it's really unsettling on the body (and mind) to keep having to adjust to a new dose.
I had a GP call me a VOMIT!
It turns out that Brad is incidental. They found him whilst trying to understand why I’d lost visual field in my right eye... and then figured out that he had nothing to do with it.
Finding out that you have a lump in your head - benign or otherwise- is a scary business, until you get used to the idea. I was talking to the quack about this and he said, “well, Lotika, forgive me, but you’re what we call a VOMIT”. “?!!” “Victim of Medical Imaging Technology”.
Ahh...
Ha ha .. have they written that on your notes ?when i got copies of mine i was initially confused to see TATT written all over them ....how you know me name ? methinks..... turns out it means 'tired all the time'
Must find out!!
PS: Brad is an utter pain sometimes. The GPs generally get so excited to meet someone with one that they start trying to blame it for everything, when as we know, Brad is nice to look at occasionally but dull. Just ask Angelina here 
ROFL
Hi Lotika,
I don't want to scare you...but please do take 'Brad' seriously, because if too large, he can negatively effect your eyesight.
Also, it sometimes causes bad headaches, migraines.
I am on some expensive tablets to shrink mine; and I have been taking these for a couple of years now.
Unfortunately, I have not had a (an) MRI for 2 years now, so I am due one very soon.
Cazianne, please don't worry, in case you have a tumor, it doesn't always mean surgery.
Wishing you (both) well.
Shield 🛡
Thanks! I have had him since the end of 2009 now, I think. He hasn’t grown, but they monitor him because he is close to my optic nerve... he’s a macro, so he’s a biggy anyway and if he gets bigger he’s going to mess with my eyesight. But the endos told me that as he hasn’t grown more in all these years, so they now think he is unlikely to. I think they are monitoring him for data at this point if I’m honest. Fair enough!
I'm glad that it's being monitored, that gives you peace of mind.
Take care Lotika 🙂
It is possible that your pituitary is for some reason putting out too much TSH.
That would suggest to many doctors that your levothyroxine dose needed to increase.
But, when you do increase the dose, you suffer the effects of over-medication.
So the doctor responds by reducing your dose. When they check again, your TSH has risen... And on and on.
Yes - there could be a pituitary issue behind this.
But you would get a similar effect if the dose adjustments are heavy-handed. Like switching between 50 and 150 micrograms - and back.
In this sort of case, dose changes would need to be very small. For example, 100 to 112.5 micrograms. But if you do have a pituitary issue, these dose changes are likely to lead to much confusion.
Someone needs to look at your full set of test results. I suggest you ask for copies.
hi, yes my GP goes off the TSH and wants to increase, the consultant must go off another reading to say I am on enough so the TSH should not be so so high. I have changed my Thyroxine twice since November, the last time I felt Hyper for four days, palpations, heart rate up etc. Its hard to concentrate at work. My last two dosages were 100 one day 125 the next, that was because 100 daily was to low and then previously 125 every day was too high, I get so fed up. feel ok for a while, say two to three months then start to get symptoms, I speak to people who have a blood test once a year, hope they can solve this. When I was 1st diagnosed my GP said he could treat me if underactive, he got blood results and said there was a problem with my Pituitary and that I had to go to the hospital. Told consultant last week, he just said ah well that was 30 years ago and things are more advanced now
Hi try not to worry, I was 18 when I had pituitary gland problems, it controls things apparently , I was given bromocrptine to control it until I was 40, it had swelled to the size of a orange when it should have been a pea, hopefully a simple fix.
I have had that issue for years. They try to reduce my thyroid medicine to get the pituitary gland working again which it doesn’t. I literally have no tsh when my test results come in. It just happens over the years of being on thyroid medication. There is nothing they can do to get it working again, it is what it is. It is impossible to drop weight even though I eat healthy and workout 6 days a week. As that gland works your metabolism.
I’ve had high/non-suppressed TSH for over two years. I’m overactive and my only medication is propranolol. I’ve had all the blood tests, a TRH test, and imaging done twice (Dec 2019 and Jan 2021). Last week I was told (for a second time) that I was unlikely to have a tsh-secreting adenoma. So now it is proposed the problem is genetic and dna testing in the next step. I’m likely (in a few months!) to need to have an overnight hospital stay for further tests to identify what is likely to be ‘resistance to thyroid hormone’. I’m hopeful of having a diagnosis within 3 years of my first symptoms in January 2019. Covid has slowed things a little, but even so, it’s a good job I’m very patient (except when my thyroid hormones are on the rise! 🤣).
Hi..when I said pituitory reading high I meant Tsh..he said the bloods show I am getting enough Thyroxine and my body is dealing with it well..he said he would expect the Tsh would be low..he explained that the Pituitory is the trigger and said it is faulty..hope this makes sense
Hi..quick update everyone..consultant left a voice message..he is sending me out a letter as he has reviewed my bloods..he now wants me to have another blood test and he said this is going to a different lab..does this make any sense to anyone? Will update further when I receive my letter..thanks for all your support everyone
I'm not sure..going in the morning so will ask what they are testing
I know..thank you
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