I have pituitary failure and it's taken me almost 20years to get myself sorted. I take T3 in the form of Cytomel which is reluctantly prescribed by my local Endo but beyond that they are totally useless. I now see a specialist in Leicester who has got a better idea and I now have hydrocortisone, growth hormone, estrogen and testosterone to replace the missing hormones. I take 87.5mg of T3 split over the day but the bulk earlier on in the day and less later in the day. I also have metabolic dementia caused by inappropriate treatment of my failing pituitary. I had at long last started to feel myself with more energy but in the last six months I have started to feel hypo again with stiff fingers and legs, falling asleep during the day, and no energy. I am also gaining weight despite cutting my food back to minimal,eg two snacks and one small meal low in carbs once a day. I had some blood tests run via the gp to check on my iron levels. They areFerritin 113 (30 -400)
Folate >20 (3.8-26.8)
which seem ok. I don't have a TSH and my T4 is minute caused by a non functioning pituitary. I want to increase my T3 but the Endos are horrified. I have taken over 100 MG before but was persuaded to lower it after a bout of Epilepsy. Anyone any ideas?
Heather
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heathermr
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Hi Heather, I have never heard of pituitary failure and it's the first time I have read about it on this forum. It sounds quite a complicated problem. I was diagnosed with hypothyroidism around 36 years ago but my levels go from high to low quite frequently and all my gp tells me to do is either increase or decrease my eltroxin. I had an ultrasound done on my thyroid and was told that it has shrunk and could not be seen on the screen! Then I had an MRI done and was diagnosed with empty sella pituitary which means that has atropied also! It's a wonder I am functioning at all! I went to an endo but he deals mostly with diabetic patients and had no time for me. I told my gp that I was not happy with the way my thyroid was being managed but she just shook her shoulders and said that's the way with some people and I would just have to live with it. My hubby has been saying for the past 30 years that the problem is with my pituitary but I am not getting any advice other that from Dr. Google.
Marge, have you had your antibodies tested? Sounds very much as if you have Autoimmune thyroiditis - Ord's, to be precise. It doesn't change the treatment, but would explain why your levels fluctuate.
I don't think anyone can have any ideas about that without seeing an FT3 result. That said, it's not about the size of your dose, it's about how much you absorb, but in the gut and at a cellular level. We can see how much you absorb in the gut from your blood test results, but there's no way of knowing how much is absorbed by the cells except symptoms. Some people just need high doses of T3 - I'm one of them!
I am also gaining weight despite cutting my food back to minimal,eg two snacks and one small meal low in carbs once a day.
If you are under-medicated then your weight gain is not about how many calories you eat. Cutting back to a minumum is not a good idea and probably won't help you lose the weight. Weight-gain, when hypo is about low metabolism and water-retention rather than calories. And not getting enough calories will definitely reduce your energy - calories are your energy.
I havent had a ft3 test done for years as the local endos just don't understand pituitary failure. I was left to try and solve the problem on my own.My B12 levels were 632 (197 - 771) but Vitamin D was not tested.
I am prescribed calcium and vit D supplement, and I take a multivitamin containing Biotin.
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Testing options and includes money off codes for private testing
Thanks for your reply but I'm very reluctant to stop my t3 even for 8 to 12 hours as my dementia kicks in when my T3 is low and I become almost mentally unrecognizable. I also know that my TSH is undectable as it has been for 15 years plus. My T4 is also undectable as there is no stimulation from the pituitary.
I'm very reluctant to stop my t3 even for 8 to 12 hours as my dementia kicks in when my T3 is low
Your T3 is not going to drop low enough to affect your dementia in 8 hours. The half-life of T3 is about 24 hours. That means that if you take 87.5mg at 8 am one morning, by the following morning there will be 43.75 mcg left - minus what got into the cells - and it doesn't all get into the cells by any means. And that just in the blood. And, in the blood it doesn't do anything. It only does what it's supposed to do when it enters the cells. And when it enters the cells it stays there for about 3 days. So, I really don't think that having your last dose of T3 8 hours before the blood draw is going to have any negative effects. And you can take it immediately after the blood draw.
I am prescribed calcium and vit D supplement, and I take a multivitamin containing Biotin.
Why are you prescribed calcium? Taking vit D increases absorption of calcium from food, so doubtful you need any more on top. And too much is not good. But, you do need to take vit K2-MK7 with it to make sure the extra calcium goes into the teeth and bones, and doesn't build up in the soft tissues. And magnesium because vit D and magnesium work together.
Multi-vitamins are a very bad idea for many reasons - one of them being that they usually contain calcium (do you get tested for calcium regularly because you could very well be over-dosed on it now). Also, the usually contain iodine, which is not a good idea to take either - you'll be getting plenty of iodine from your thyroid hormone replacement. And they usually contain iron, which will block the absorption of a lot of the other nutrients. So, money down the drain!
You have clearly never seen me before i take my morning dose of T3. My last dose is at 4pm the previous day and by 8am my speech is virtually none existant and my brain is hardly functioning. Getting up out of bed, getting dressed and getting out for a blood test would be virtually impossible without that first dose of T3. You know that the brain uses more T3 than the rest of the body, so this is the first place that it is going to show if its getting low. My dementia is linked to my endocrine problems so first thing in the morning my system is completely unbalanced and the dementia raises its head. Its not a pleasant experience and I have had to completely rethink my live style to continue on a day to day basis. My dementia was diagnosed 19 years ago, it is only recently that an MRI has confirmed that my pituitary shows changes particularly in the vascular system and has shrunk markedly. In short its failing completely.
I was given calcium and vit D by my GP years ago to help ward off problems with my bones given that I am taking T3. I have regular Dex scans to check that all is well there.
I take 87.5mg of T3 split over the day - it's mcg not mg.
and
. I don't have a TSH and my T4 is minute caused by a non functioning pituitary
I would suggest that the reason is the high T3 dose
If you are taking a large dose of T3 that will naturally lower both TSH and FT4 because the pituitary gland recognises the high hormone level and is therefore not stimulated to produce more hormone.
I need 100mcg T3-only ( it has been 212.5mcg) and both my TSH and T3 are on the floor....and my FT3 is well over range. Not that I test anymore...the tests were not devised for T3-only treatment. On such a dose we have to monitor by signs and symptoms...good old fashioned clinical evaluation! Many medics have weak skills in that area!
Serum FT3 is inactive. To become active it has to be absorbed into the cells, flood the nuclei and attach to T3 receptors... it then fulfills it's function
For a low cohort of patients this action is impaired causing low cellular T3... myself included.
Low cellular T3 = poor health.
The higher dose acts as a " battering ram" against the resistance existing in the cell wall, the force then allows part of that large dose to be pushed the cells .....and so on.
The remaining/ unused serum T3 is eventually metabolised and excreted....so, high serum is FT3 to be expected. This freaks medics out because they don't all understand thyroid hormone resistance and don't always know the difference between serum T3 and cellular T3!
An over range FT3 is potentially dangerous unless a form of thyroid hormone exists....we have to look out for signs of overmedication and lower the dose if this occurs.
If cellular T3 is low then metabolism is low...and less energy is produced. Even at rest, a body needs energy for all it does.
It is also worth bearing in mind that the brain needs a huge amount of T3. Several studies demonstrate reductions in attention/concentration, general intelligence, memory, language, perceptual function, executive function, and psychomotor activity when T3 is low.
Don't starve yourself because thyroid weight gain is not the same as weight gain from over eating....thyroid hormone replacement has to be correct for the individual to lose weight. Adequate T3 raises metabolic rate and burns calories faster
How long have you been taking 87.5mcg T3?
Did you feel better on 100mcg? I suspect you did!
When was vit D last tested....do you have the result?
It is best to combine vitamin D with vitamin K2....the latter causes calcium to enter the bones and so prevents it from clogging up the arteries
A few ideas based on personal experience and knowledge...the body needs what it needs not what a numerical chart suggests. We are all different!
'The higher dose acts as a " battering ram" against the resistance existing in the cell wall, the force then allows part of that large dose to be pushed the cells .....and so on.'
DipoyDane, how long did you personally need to stay at your very high dose, before being able to drop back? Thank you.
I don't think there is any guarantee that the dose can be dropped back....or that a timescale can be suggested.
It depends on the individual, and the dose involved... we are all different
I can't remember exactly how long it took me to drop back my dose (I'd need to check through old diaries which I don't have time to do at the moment). But, certainly many momths rather than weeks!
What I said stands....
An over range FT3 is potentially dangerous unless a form of thyroid hormone exists....we have to look out for signs of overmedication and lower the dose if this occurs.
Listen to your body, it will tell you if something is wrong!
I understand fully every situation is unique, was simply curious about your situation as I have found it fascinating to read on here. And it has made me wonder about my own situation. 'Months' helps me understand, as I did wonder reading if it was even longer. Thank you DippyDame.
By October 2020 my 200mcg dose of T3 eventualy proved too much and I began to feel overmedicated. By then I'd been taking T3 in various ways for 3 years.
So I stopped all T3 for a week then started to take 50 mcg at bedtime with a view to very slowly increasing to a therapeutic dose
My GP suggested the one step drop which I thought may have been too rapid but surprised to find this worked unexpectedly well
I very slowly increased T3 dose and by October 2022 I had reached my current dose of 100mcg.
It might have been quicker but other issues got in the way.....it's all in my bio.
Hello DippyDame, please, do you have any links to any studies, research or similar showing: " that the brain needs a huge amount of T3. Several studies demonstrate reductions in attention/concentration, general intelligence, memory, language, perceptual function, executive function, and psychomotor activity when T3 is low"? They would really help me (thyroid 'doing nothing' yet prescribed 40 mcg T3 per day, nothing else and I think my brain needs more)
Sorry but my pituitary is failing as a result of a head injury and encephalitus and I have at one stage actually stopped the T3 for 2 weeks. I was virtually comatose by those two weeks, lost my speech and my sight was affected but still my TSH was ZERO! T4 was also zero. My dementia had ramped up to such a level that I did not recognise anyone, so clearly I am never going to repeat that.
I understand about some people needing more T3 but I am dealing with the local Endos here who dont prescribe T3 normally and to ask for more is completely beyond them. I have taken more and yes felt better but trying to get it prescribed is very difficult here. In previous years I have bought it myself but its becoming increasingly difficult to buy with certainty.
I also have a pituitary disorder and I also struggle to manage it. GPs know nothing and Endos very little. The Pituitary.Org.uk organisation is a shambles… they recommended that I see my local GP or hospital for help…
Can I ask why you are not taking any T4 or NDT, but just T3?
I am not good with T3 monotherapy but had some reasonable success with NDT.
This is a long story, I was diagnosed with central hypothyroidism in my 40s but I suspect I have had it from childhood. I now know that we have something hereditary in my family as other close relatives have it too in the same form. I started off with T4 which did not work very well and then I caught chicken pox. It travelled up into my brain, I blacked out, fell to the floor and cracked my head open resulting in bad concussion. I now know that the impact shook my head so badly that it damaged the pituitary and hence why its now failing. In the meantime I saw Dr Skinner who transferred me to Armour which worked for a while. When that was not available I was moved on to T4 and T3. Sadly the injury was now beginning to bite and I became very unwell. The Endos raised my T4 to silly levels (240mcg) and 60T3 which have added to the damage in my brain and I was extremly ill, sleeping all day, could only walk two steps huge weight gain etc. Things were out of control and no one had any answers so I took control after I had spoken to Paul Robinson about T3. I decided to go T3 alone and its worked for me but I seem to need a higher dose which they cannot understand.
Fortunately I have found a Dr who understands pituitary problems and he is very good.
I am prescribed calcium and vit D supplement, and I take a multivitamin containing Biotin.
Any supplements or medicines you take containing biotin could make some blood test results unreliable - and they aren't always unreliable in the same direction. Some results could be too high, some could be too low. It isn't just thyroid function testing which is affected, there are lots of tests that could be affected.
The more biotin you take the longer the supplement must be stopped before testing. Usually we suggest stopping for 2 - 7 days. After the blood sample has been taken you can start you supplement containing biotin again.
Reasons for the problems with biotin are given in these threads :
If you have low levels of calcium then taking it is not a problem. But if your calcium levels are medium - high then taking calcium could end up with excess calcium lining your arteries. I am always shocked by the fact that doctors prescribe calcium without actually testing the patient's level.
As for vitamin D - lots of doctors only prescribe 800 iU per day.
That is far too low a level to raise vitamin D in some people. I remember my first ever vitamin D supplement was 1000 iU. My levels of vitamin D actually dropped.
If you have a supplement or a result in mcg rather than iU this link has a converter which can be used to convert in either direction :
Another point to make is that vitamin D at good levels will help the body to absorb calcium from the diet. So in people with low but in range calcium who take sufficient vitamin D their levels of calcium may rise anyway.
Someone posted on here about a pituitary problem that can arise as a consequence of losing a lot of blood giving birth (though rare in the developed world). There's no need to answer, I don't want to pry, but wondered if this could be you and if you might be better looked after if 'labelled'. Sorry I can't remember the name of the condition but I'm sure the poster would answer if you posted the question.
My failing pituitary was caused by a head injury which happened a number of years ago. I caught chicken pox which traveled into my brain causing me to black out . The impact caused concussion and damaged my pituitary. Over the last 20 years my pituitary has gradually stopped working which why I now have replacement hormones.
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