Hyopituitarism? This is completely new to me. How common is it? If you have it does it always follow that you'll get hypothyroidism? Can you have hypopitutarism it without hypothyroidism, if so what are the symptoms? After years of Autoimmine thyroid disease is it still relevant/ necessary/helpful to test for it?
I have just received latest bloods, see below, in time for a meeting with a private endo on Thursday. It's much the same as the previous two tests, in April and January this year and I still don't feel as well as I did for the 10 or so years before this change. I see this meeting with the endo as my last gasp attempt to be formally recognised as hypo to get actual real and recognised medical help. Therefore, as ever, all help, comments and suggestions I could use at this meeting would be much appreciated.
I didn't ask for a Drs comment with this blood test but I got it anyway. Here's what it said. 'The T4 level is low, which would normally be suggestive of hypothyroidism (underactive thyroid gland). However - as the thyroid stimulating hormone (TSH) is borderline low too, and Free T3 is normal - this pattern would also not be surprising if you were taking T3 (liothyronine) instead of levothyroxine as thyroid replacement medication. In this scenario, the borderline low TSH level suggests you may be taking too much T3 - please discuss your regime with your usual doctor. If you are not taking thyroid medication, the possibility of hypopituitarism needs to be considered (underactive pituitary gland - which would lead to an underactive thyroid gland as well). Further testing (pituitary studies) would be advisable if this is suspected.'
Sadly I have no idea what my T4 level was when diagnosed with Hashis back in 2009 - it wasn't taken, only TSH, which at 3.24 meant I qualified for no treatment. Yes, I started T3 shortly after in 2009 - Dr P's advice. I was never offered nor was it suggested that I should try T4, the 'instead of' implies perhaps that I should have? Having spent 17 years prior to 2009 taking no T3 (or anything else) I feel I already know what the result of reducing my T3 would be and I never want to go there again. Is this Dr really saying that if I reduced my T3 that my T4 would go up? Nothing felt very up in 2009 and surely with Hashimotos only deterioration would have happened since not rejuvenation!
So, should I be mentioning hypopituitarism to endo? Could it be an issue? I suppose it's niggling in my mind after a session with a brilliant reflexologist a couple of years ago. The only area that she found any issue with was - you guessed it - my pituitary!
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In hypopituitarism, there is an absence of one or more pituitary hormones. Lack of the hormone leads to loss of function in the gland or organ that it controls. For example, loss of thyroid stimulating hormone leads to loss of function in the thyroid gland.
Hopefully someone else might. It seems logical that if the signal from the pituitary is weak that it wouldn't be able to stimulate as high a TSH as a healthy one?
I have secondary hypothyroidism. My TSH is always low. I take T3 and T4. My T3 was on the low side so was just increased. From what my dr.explained my pituitary isn’t signaling my thyroid to produce hormone therefore causing hypothyroidism
Thanks Nanny23 that's interesting. I definitely have Hashis so probably that's all I have. I suffered a huge head trauma at age 19 so it's just a nagging doubt. I have never been thoroughly assessed for thyroid function. TSH was deemed to be all that mattered so there was no further investigation.
"this pattern would also not be surprising if you were taking T3 (liothyronine) instead of levothyroxine as thyroid replacement medication"
The comments on the results , as quoted above, seem to indicate that your results are consistent with someone medicating on T3 only which I believe is what you do.
these results are typical for someone on just T3 So they are not unusual. They are for me I was reasonably happy when T4 came in at 41 (66-181) and FT4 at 6.1 (12 - 22) which it did for years - then suddenly dropped.
from sound of it you have Hashimoto’s? Did you ever have high TSH at diagnosis ……pre starting T3 'Sadly I have no idea what my T4 level was when diagnosed with Hashis back in 2009 - it wasn't taken, only TSH, which at 3.24 meant I qualified for no treatment. '
when we take almost any dose of T3 this almost always results in suppressed TSH
Suppressed TSH means your own thyroid output is completely stopped because pituitary is no longer asking thyroid to work …..so if only taking T3 …..Ft4 will be zero or very low
After years of Hashimoto’s….your own thyroid is likely completely kaput anyway
You might experiment (via endocrinologist) adding in 25mcg dose levothyroxine…..retest in 6-8 weeks
Last dose levothyroxine 24 hours before test
Some on just T3 find after a few years they can tolerate adding levothyroxine…..others can’t
As to TSH of 3.24 …..Just testing TSH is completely inadequate.
With Hashimoto’s we frequently develop low stomach acid, this leads to poor nutrient absorption and very low vitamin levels. Low vitamin levels tend to lower TSH. …..
We see hundreds of members who’s TSH increases once low vitamins are corrected by supplements…...then with two thyroid tests with TSH over 5 can get diagnosed and started on levothyroxine
Testing early morning around 9am will give highest TSH
generally if TSH was ever over 2 you wouldn’t suspect central hypothyroidism or hypo pituitary
Hypo pituitary would generally also result in low adrenal levels
Thanks SlowDragon, that helps a lot and sounds like Hypopituitism might be a red herring - at least in my case.
We see hundreds of members who’s TSH increases once low vitamins are corrected by supplements…...then with two thyroid tests with TSH over 5 can get diagnosed and started on levothyroxine - If only I'd known this 13 years ago maybe I could have tried for it. Sadly GP gave me no reason why she wouldn't treat just said everything was normal. I didn't understand the first thing about thyroid back then and was so brain dead at the time I just accepted it all. It's a lesson for anyone who is close to the magic 5. It may be worth suffering a bit longer if you can reach 5 you could potentially get some, even if not all, your meds prescribed without having to scratch about getting it from heaven knows where.
yep….the wonders of the internet and sharing of information means we are no longer left in dark struggling alone
I did 20 years of hell on grossly inadequate dose levothyroxine with Hashimoto’s ….with severe vitamin deficiencies and undiagnosed gluten intolerance….before joining here
Joined forum in 2014/15 ….immediately got full thyroid and vitamin testing done privately…..and got access to historic test results online…. Private endoscopy, private DNA testing….
Historic results 20 years ago …vitamin D was 12nmol (never told or treated) and Ft3 was well below bottom of range….but as far as endocrinologist was concerned my TSH was “normal”….therefore I was “cured” on 75mcg levothyroxine! (I was in a wheelchair/bedbound)
This is not a rare disease…..but it is still rarely understood by medics
Suggest you get copies of all test results from 2000 onwards
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Hyopituitarism? This is completely new to me. How common is it?
According to most doctors, it is very rare. So, they never bother to test for it. And, as they very often only test TSH, they would have no idea if the patient had hypopituitaryism! So much for 'the TSH tells us all we need to know'. It doesn't.
From what we see on here, it's not as rare as all that. We see quite a lot of it.
Can you have hypopitutarism it without hypothyroidism,
I don't think so, no. TSH - Thyroid Stimulating Hormone - is a pituitary hormone. Without adequate TSH, the thyroid will not produec sufficient thyroid hormone. So, thyroid hormone levels - FT4 and FT3 - will drop, but the TSH will not rise in accordance to stimulate the thyroid to make more. Eventually, you will become hypo.
After years of Autoimmine thyroid disease is it still relevant/ necessary/helpful to test for it?
Who said you have Autoimmune thyroid disease? The antibody levels in that test posted above do not suggest you have it. Have antibodies been higher in previos tests?
I see this meeting with the endo as my last gasp attempt to be formally recognised as hypo to get actual real and recognised medical help.
I cannot see how those labs are going to get you a diagnosis. What exactly are you taking? T3 only? How much? Your FT4 is very low, yes, but that's not surprising when taking T3. The T3 has lowered your TSH, so the thyroid is not being stimulated to make any T4. Your FT3 is not that high, but it depends on your dose.
Your TSH is low because you are taking T3, so in no way can indicate hypopituitarism - that's what T3 does. You can only diagnose hypoP when not takin any thyroid hormone replacement at all. So, you definitely wouldn't get that diagnosis when taking T3. And you don't have complete labs from before you started taking it. So, -he only way would be to come off the T3, and wait around six months to see how far the TSH rises, and then do full thyroid labs. It's not going to happen on Thursday.
Is this Dr really saying that if I reduced my T3 that my T4 would go up?
If I were you, I wouldn't take any notice of this doctor's comments. These Medicheck doctors are not thyroid specialist, they are just bog-standard NHS-trained GPs. Only sometimes they seem to know less than average! Really not worth reading.
Yes, that's what he's saying. But that is grossly over-simplifying. The TSH would have to rise, first, before the FT4, and you would probably have to come off the T3 completely for that to happen. And, the TSH might not rise, anyway. Not because you have a pituitary problem, but because if the TSH is suppressed long enough, the HPT axis will become down-regulated. Totally unrealistic comment!
surely with Hashimotos only deterioration would have happened since not rejuvenation!
Yes, but do you actually have Hashi's?
So, should I be mentioning hypopituitarism to endo?
I don't really see why you would. What makes you think you have a pituitary problem - Secondary Hypo? Without any sort of tangible proof, I doubt if he's going to waste his time doing all the necessary tests.
On the other hand, if it were me, I've be asking him to check out my adrenals. If, by any chance, you do have a pituitary problem, it could show up there, and then you could bring the pituitary into the equation. But, as it stands, I doubt if he's going to take any notice of a reflexologist - he might even laugh in your face. We have to stay credible when dealing with these people if we want to be taken seriously.
OH I'm certainly not mentioning reflexology to him!!!! From what you say it isn't worth mentioning pituitary either. Don't want to waste a precious minute of this consultation on anything that isn't going to help. So thanks for this.
Yes, I definitely have Hashis, GP diagnosed 'Sadly I have no idea what my T4 level was when diagnosed with Hashis back in 2009 - it wasn't taken, only TSH, which at 3.24 meant I qualified for no treatment. Yes, I started T3 shortly after in 2009 - Dr P's advice. ' So I'm not looking for another diagnosis I just need help with the one I've got. I was good for ten plus years and now something has changed and I'm not so good - I hope he'll help with that
But, if he only tested for TSH, he could not possibly know that you had Hashi's. Hashi's is diagnosed by high, over-range antibodies and/or an ultrasound.
Yes, over range antibodies were confirmed in 2009 I still have a copy of the blood test, and will take it on Thursday. It says 'Thyroid Peroxidase antibody level POSITIVE Consistent with autoimmune thyroid disease. ' Even my GP doesn't deny that, he just won't treat it.
But, of course, whether or not one is treated depends on TSH/FT4/FT3 levels. And, that's where he made his mistake, by not testing the FT4. That would have given far more information than just the TSH on its own.
But, I would still ask the endo for cortisol testing, if I were you.
It is estimated that there are approximately 70,000 people with a pituitary condition in the United Kingdom. To meet the need for information and support The Pituitary Foundation was set up in 1994 and was subsequently registered as a charity in September 1996.
The Pituitary Foundation is a national support and information organisation for pituitary patients, their families, friends and carers. We are the UK's leading charity providing support to people affected by disorders of the pituitary gland such as acromegaly, Cushing's, prolactinoma, diabetes insipidus and hypopituitarism.
The Pituitary Foundation operates throughout the UK and Republic of Ireland. We are a membership organisation and have in the region of 2,300 subscribed members and we support thousands of people affected by pituitary conditions each year. We are a relatively small charity, with ten members of staff and supporting our work we have a team of 140 volunteers across the country.
It may not be relevant to you endo appointment but if you re not feeling well and you are on T3 than there are a few questions to be asked regarding these tests? What is youT3 dose and dosing and how long was the gap between the last dose and the testing?
Are you tracking your signs and symptoms too? Given your T3 is ok in the test but could be higher, maybe you need to raise your dose? I agree with greygoose that testing adrenals would be useful? Have you ever had a short Synachten test or done saliva 4 point cortisol test?
Hi Samaja. Thanks for reply. I reduced T3 dose early 2021 after endo promised all sorts of ghastly outcomes if I continued. I reduced from 50mcg to 37.5mcg, 25 on waking 12.5 at bed time. Gap before blood taken was approx 10 hours.
I have had the unwelcome return of several symptoms in the past year+ which is why I have been looking for clues both on here (I think most feel I'm undermedicated) with specialist nutritionist and tomorrow private endo. I've been hanging on and putting up with things waiting for tomorrows consultation. Hopefully I'll come away with a way forward and a plan.
Never had Synachten test as it would need GP cooperation. I did do a cortisol saliva test in September 20. I posted the results on here at the time. It looked roughly ok, slightly below optimal am, noon and evening and in range at night. DHEA 113 (106-300) I have no idea what that means but thanks to you, and Greygoose for mentioning it. I had forgotten about it but will certainly take it to the endo tomorrow.
As T3 goes it is a rather low dose you are on now and my initial feeling too is that you might be undermedicated. The thing is not to listen to what endos say because they usually have no idea of how T3 really works and even less about the dosing. 40-60 mcg is an average dose and there are people who are on less and more but if you are feeling worse on the reduced dose than it's not right for you.
Also, with 10 hours gap before the draw your T3 level is not that high which might also point to undermedication.
I'm afraid that any test from 2020 is old news and I wouldn't go on it. Your endo will probably dismiss it anyway because they don't generally believe in saliva testing so I wouldn't hold my breath it will make any difference. Synachten test is actually done by endos so I would push for it tomorrow. Your DHEA is on the lower side of the range and that might point to adrenals struggling and if you cortisol test wasn't optimal it's another piece of evidence. to consider. Let's hope your endo will listen!
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