Empty fossa syndrome
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After years of knowing the pituitary wasn't producing Thyroxine, only after paying for a private endocrinologist have we had the empty fossa diagnosis. So the docs have consistently read the incorrect level to medicate my 78 year old husband with the correct dose. I personally don't understand all your medical levels but know he's pretty poorly just now. Persistent dry cough, immensely fatigued, tremors. Confused, shuffling around.They increased the Thyroxine immediately from 100 to 125 and we've to wait to see if things improve. In years past, he was on 200mg. Has anyone here had similar problems?
1 like, 7 replies
MtViewCatherine estelle44124
Posted
Hello Estelle, I don't know how relevant this is. But it seems time that pituitary issues could well accompany thyroid disorders. I feel strongly that while on the thyroid meds, both my thyroid and pituitary were suppressed. When I stopped the meds, I started feeling much better, although the hypo symptoms still exist, if that makes any sense. My point is that the suppression of the pituiataru caused by the meds may contribute to the extensive side effects caused by the meds.
My elderly mother has had thyroid disease for decades. And has never been treated properly. She does exhibit signs of pituitary disorders, including prominent brow ridge and other indications. She had a deep rattling cough for over 15 years, which has gone away since I've been giving her herbs and acupuncture. She's also had sever confusion and dimentia, caused both by lack of proper thyroid medication, and by additional psyche medications given incorrectly, when she really needed thyroid meds.
its gotten so bad, it's hard to tell what's what. However, I feel the pituitary disorder was caused by decades of lack of thyroid treatment. Likely the pituitary overworked due the lack of thyroxin, resulting in high growth hormone.
Since she's 86 and I've had my hands full treating the thyroid disease and results from improper meds, I've not Perseus the pituitary aspect. My feeling is that the acupuncture has resulted in her being so much more balanced! I've got her in ThyroGold and am working out the be at dosing for her.
barbara98940 estelle44124
Posted
Hi Estelle, To clarify, the pituitary gland produces thyroid stimulating hormone (TSH), which instructs the thyroid to produce more thyroxine (T4).
The body has to convert the T4 into T3 (liothyronine) which is the active substance our bodies use to metabolise food into energy, heat etc.
If your husband's pituitary gland isn't producing TSH, then his thyroid won't be instructed to produce thyroxine (T4).
A problem arises when doctors only measure the TSH and try and dose thyroxine to get the TSH in range.
To monitor his thyroxine dose the doctors will need to measure his T4 level via blood tests and completely ignore his TSH result. NOTE do not take thyroxine on the day of the blood test until after the blood has been taken else the blood test gives an artificially high result.
He may well end up on a higher dose of thyroxine, however the body needs time to adjust to an increased dose, so it can only be increased slowly - preferably by no more than 25mcg every 2-4 weeks. If thyroxine dose is increased too quickly it can cause heart problems, this is particularly true in older people.
Another thing to watch out for is...
Some people can't convert T4 (thyroxine) to T3 very well. Your husband may be one of these people.
Try getting a blood test that measures T4 and T3. Get a printout of the results. It is not sufficient to just be told the results are 'normal'. Look to see WHERE each result comes in its range - they should both be about at the same point e.g. if T4 is towards the top of its range then T3 should also be towards the top. If T4 is towards the top and T3 is towards the bottom, then it is likely he has a problem converting T4 to T3. In which case because the T4 isn't being converted it will stay in the bloodstream and mess up the T4 blood test, gving artificially high reading ad the TSH blood test giving an artificially low reading.
The reson for this is...There is plenty of T4 available, so the Pituitary gland thinks the body is getting enough T4 and so it will stop producing TSH (i.e. the TSH will be low), BUT the patient will still be having hypothyroid symptoms as they are not getting the actual hormone they need, which is T3.
Hopefully an example will help this make sense. I don't convert T4 to T3 very well. My T4 level was in range. My T3 level was below the bottom of its range. My TSH was at an unmeasurably low level. I still had hypothyroid symptoms (cold, sluggish, putting on weight despite eating very little, joints stiff, muscles weak...).
Hope this explanation helps and my thoughts give you an idea of what to watch out for. All the best.
barbara98940
Posted
estelle44124 barbara98940
Posted
Thank you so much for this explanation. I have been checking hospital endocrinal clinic reports from 2013 till present day. It states that he was known to have secondary hypothyroidism since 1980's. Showed slightly raised free T3 at 6.6 with normal free T4. It says that TSH was <0.01mU/L " Burt assuming that he has secondary hypothyroidism this would not be an accurate guage to be used for assessment of his replacement therapy"
I have to say that the readings are almost mumbo jumbo. But it also says the short synapthen test was not entirely normal. The letter stated reviews to take place in two months time. I seem to have no further letters until 2015. A test mentioned then, wasn't done - or if it was, not reported on. When the clinic was prompted by the GP in January, free T4 was 15, TSH 0.03 "HIS TSH has been low for a long time".
Worryingly, the 2013 referral from the GP to the hospital mentions a normal MRI scan in the 1980's. How is it now possible to get an MRI result showing empty fossa syndrome? For which we went privately and now much out of pocket!
Unfortunately, we've always relied on our NHS clinics and not really stayed on top of what's been said in correspondence between the hospital and GP. Thanks for listening!!
barbara98940 estelle44124
Posted
Hi Estelle, unfortunately I do not have the knowledge to comment on your husband's MRI scans. I am merely a hypothyroid patient who continued to feel unwell despite being on thyroxine - what I know, I have found out in order to understand what's going on and treat myself. I'm in the UK. My NHS lab's ranges are as follows T4 = 9-19, T3 = 3.4-5.7. So it can be seen that your husband's T4 result of 15 is in range. However without a T3 result taken at the same time it is not possible to know if he is converting T4 to T3 correctly.
Keep an eye on his blood test results - anyone looking at them in isolation and not knowing he has a pituitary gland problem will come to the wrong conclusions if they rely on his TSH result. Usually if TSH is low, it means that the body is getting too much thyroid hormone, but in his case all it does is confirm that his body is not producing TSH. In which case it is the T4 figure that needs to be used to find out if he is getting enough thyroxine. The result of T4=15 suggests he is, so we need to continue to look for what else is wrong.
Your post is the first I have heard of empty fossa syndrome. A quick look at the internet suggests that it often doesn't cause any problems but that in rare (! - ignore this, these rare conditions do happen) cases it is associated with other problems e.g. as you have found out, a deficiency in some hormones. Looking at the pituitary society. org' website it says:
"Hypopituitarism refers to loss of pituitary gland hormone production. The pituitary gland produces a variety of different hormones:
Adrenocorticotropic hormone (ACTH): controls production of the adrenal gland hormones coritsol and dehydroepiandrosterone (DHEA).
Thyroid-stimulating hormone (TSH): controls thyroid hormone production from the thyroid gland.
Luteinizing hormone (LH) and follicle-stimulating hormone (FSH): LH and FSH together control fertility in both sexes and the secretion of sex hormones (estrogen and progesterone from the ovaries in women and testosterone from the testes in men).
Growth hormone (GH): required for growth in childhood and has effects on the entire body throughout life.
Prolactin (PRL): required for breast feeding.
Oxytocin: required during labor and delivery and for lactation and breast feeding.
Antidiuretic hormone (also known as vasopressin):
Hypopituitarism may involve the loss of one, several or all of the pituitary hormones. Thus, a complete evaluation is needed to determine which hormone or hormones are deficient and need to be replaced."
I do therefore urge you to follow your instincts and push for further tests to find out if he is deficient in any other hormones. Do look at the website I mentioned, it is very clear and helpful.
barbara98940
Posted
By the way 'secondary hypothyroidism' just means that something else is causing the hypothyroidism - in your husband's case, the pituitary gland problem.
In my case, I have 'primary hypothyroidism' which means it is my thyroid itself which is causing the hypothyroidism.
'the short synapthen test was not entirely normal' bit you wrote rings warning bells - this implies he has a cortisol hormone problem. It is essential to investigate this promptly, as this could imply a problem with his Adrenal glands, which in turn affects the absorption of thyroxine. If you look at the Patient Information Leaflet (PIL) enclosed in the box of thyroxine tablets, one of the contra- indications is Adrenal problems. Please get an urgent appointment to see your GP (get an emergency GP appointment if necessary) and explain your concerns. Take a written list of bullet points with you to the surgery to give to the GP. this list should include:
- I am worried about my husband
- he has a confirmed problem with his pituitary gland
- he doesn't produce TSH
- i know the pituitary gland produces other hormones that he might also be deficient in
- he had a Synapthen test 'that was not entirely normal' that I believe needs to be followed up on
- the thyroxine PIL with the thyroxine tablets says taking thyroxine is contraindicated with adrenal gland problems.
- His symptoms are...
If this doesn't work, I suggest seeing a different GP in the same practise and trying again.
Failing that you could do with getting a 24 hour saliva test, to test his cortisol levels throughout the day (this is a more accurate test of adrenal gland function and can be obtained privately). I think 'tpauk' website has details of where to obtain it.
Apologies if this seems prescriptive, I just thought it sounded like you had enough on your plate and needed some help how to approach this. Adapt it as you see fit. Best wishes to you both.
estelle44124 barbara98940
Posted
Just a quick note to advise you of yet another twist. This morning his respiratory consultant rang. Initially seen in May for breathlessness and wheezing, his lungs are clear. But a sleep apnoea test ordered & not done. Re-requested October, and not reported on. Until I chase it up at the end of last week. Miraculously, the report has now surfaced. So the "sleepiness" has two causes as poor sleep pattern isn't helping. Heads will have to roll methinks. All the best to you.