I had a brain-wave...

[PinkNinja]

I was thinking today, something I have had great difficulty with in recent years, and I remembered something from several years ago. In the past I would have linked this piece of information into the equation of my thyroid health automatically with no effort but, alas, my brain has not been functioning on all cylinders due to my pesky thyroid and the inadequate treatment thereof!

The thing I remembered happened when I was pregnant with my daughter. I had previously had a miscarriage at 12 weeks thanks to a doctor who refused to check my thyroid even though I was already diagnosed and was experiencing quite severe hypo symptoms. I then had a further miscarriage. As a result, my regular GP (a very good GP) referred me to a foetal medicine specialist as soon as I became pregnant again, especially as I also take epilepsy medication.

Well, he was a wonderful doctor. At around 6 months I had a hospital appointment to see him again. At this point I had inexplicably gained around 4 stone! I also had worsening hypo symptoms. This weight gain was way more than I should have gained despite eating healthily and walking several miles a day. It turned out that my T4 had dropped from around 13 to only 8 (ref range 7.8 - 14.4). He very sensibly increased my thyroxine dose even though I was still in range and regardless of the fact that my TSH was below the reference range. THIS IS THE THING I JUST REMEMBERED! MY TSH HADN'T INCREASED AT ALL!!!!

I am fairly convinced that my pituitary is no longer producing enough TSH. With a T4 that had dropped that low, and with my increasing hypo symptoms, I would have expected my TSH to have increased at least a little bit, at least somewhere into the normal range. I certainly wouldn't have expected it to be below range.

This does worry me somewhat. Currently, I am lucky enough to live in an area where they also check T4, not just TSH like they do in vast swathes of the country. What will happen if they switch to only testing TSH?

Just a thought that I will try not to lose sleep over!

Sorry about the rambling. I blame the glass of wine I had this evening

Carolyn x

[helvella Administrator Thyroid UK]

The only explanation of that I can think of is that you are hypopituitary. (I somehow don't think being hypothalamic, the only other cause I could dream up or find, would have gone unnoticed.) Have a look here:

dundee.ac.uk/medther/tayend...

And here:

pituitary.org.uk/content/vi...

From what I have read, it is quite possible for your pituitary to only have a problem producing TSH - so simply being treated with thyroid hormone would be all that is required (and, as well you know, ignore the TSH test results).

At the same time, it is obviously going to gnaw away at you until whatever is behind it is identified. So do go and ask for it to be checked out.

Maybe get someone to write in your records "DO NOT RELY ON TSH TESTING"?

One thing that your question made me realise/find out is that one cause of optic problems is an enlarged pituitary putting pressure on the optic nerve. And an enlarged pituitary happens reasonably frequently in hypothyroid people - seemingly in an effort to ramp up TSH production. Had completely forgotten that, if ever I had known?

Rod

[Jane104 in reply to helvella]

Hi Rod, what kind of optic problems does an enlarged pituitary cause?

[helvella Administrator Thyroid UK in reply to Jane104]

I know little to nothing about this - so here is one paper:

Gac Med Mex. 1990 Jan-Feb;126(1):51-4.

[Primary hypothyroidism associated with a chiasmatic syndrome simulating a prolactinoma].

[Article in Spanish]

Miranda-Ruiz R, Chávez M, Ruiz-Velasco G, Castañón J, Zárate A.

Source

Unidad de Investigación Clínica en Enfermedades Endocrinas y Hospital de Especialidades del Centro Médico Nacional Siglo XXI.

Abstract

Three cases of primary hypothyroidism with optic chiasm compression due to pituitary hyperplasia are reported. Patients consulted for amenorrhea, galactorrhea and visual disturbances. The study of these patients disclosed a chiasm syndrome, persistent hyperprolactinemia, decreased thyroxine and triiodothyronine associated with elevated thyrotropin stimulating hormone in blood. Computerized tomography scan revealed the presence of pituitary enlargement. Treatment with thyroid hormones resulted in total resolution of clinical features and disappearance of tomographic abnormalities.

PMID:

2365172

ncbi.nlm.nih.gov/pubmed/236...

Shame it is in Spanish.

Rod

[helvella Administrator Thyroid UK in reply to Jane104]

And as it is simply compression of the optic chiasm, this would apply:

emedicine.medscape.com/arti...

Rod

[PinkNinja in reply to helvella]

Thanks Rod. I will do that. I am quite lucky that my current GP ignores TSH anyway. He hadn't even noticed it was low as he was going by my T4 level. I will ask him to put it in my notes just in case we ever go the TSH-only route.

It does rather highlight a major problem with relying on TSH only.

I can't believe I only just put all this together! I'm an intelligent person who usually spots patterns where there don't see to be any - I can only put it down to thyroid-induced brain-fog

[helvella Administrator Thyroid UK in reply to PinkNinja]

Hypothyroidism caused by being Hypo-pituitary is sometimes called secondary. And, if caused by being Hypothalamic, it is tertiary.

Both can be classed as Central Hypothyroidism.

Of course, some lucky people might have a combination or primary and/or secondary and/or tertiary. With or without autoimmune involvement.(Against thyroid, pituitary and hypothalamus.)

ncbi.nlm.nih.gov/pubmed/182...

And this is possibly the single most important argument against TSH for diagnosis.

[headinjuryhypo]

I agree with Rod that it looks as if you have hypopituitarism. Here is another, very full, link that might interest you

abiebr.com/set/9-neuroendoc...

Don't be put off that this is in a brain injury guideline. Hypopituitarism is hypopituitarism however it is caused. What you can see from the information there is that your weight gain and your miscarriages could have been caused by other pituitary deficits, not just the thyroid.

If you do raise this possibility with your doctor and he gives you the short synacthen test, please be warned that a normal result does not exclude hypopituitarism. This test has only about 60% accuracy for diagnosing pituitary dysfunction (Wikipedia 'short synacthen test' gives a reference to a review by Dorin). Similarly normal IGF-1 levels don't exclude it either, Wilkinson CW et al, High Prevalence of Chronic Pituitary and Target-Organ Hormone Abnormalities after Blast-Related Mild Traumatic Brain Injury, 2012 Frontiers in Neurology: “The presence of normal IGF-1 values cannot be used to exclude GHD because it is often diagnosed in individuals with normal or even elevated IGF-I levels” ncbi.nlm.nih.gov/pmc/articl...

The insulin stress test or the glucagon stimulation test or the GHRH-arginine test are reliable.

I do hope you get the treatment you need.

Joanna

[PinkNinja in reply to headinjuryhypo]

Thanks for this. I shall have a good read. I understand that hypopituitarism can be caused by head injuries. I had more than my fair share as a child, including loss of consciousness and concussion. I'm rather clumsy. I even tripped over a snowman on the way home!

[nightingale-56]

Hi Carolyn, Your brainwave has given me an awful lot of information about my son's condition, although Great Ormond Street were very good about giving information when he was first born. Also thankyou Rod and Joanna for your input too. On 25 January we have an appointment with the endo and I have an awful lot of questions for him and this has given me quite an insight. Many thanks, Janet.

[PinkNinja in reply to nightingale-56]

I hope you get the answers you need for your son

[nightingale-56 in reply to PinkNinja]

Sorry Carolyn, I forgot to say my son's condition is Hypopituitarism with Septo-Optic Dysplasia. So possibly a little like your condition could be. Hope you get it sorted soon. Regards Janet.

[Framboise]

Carolyn have you had other pituitary hormones tested? My TSH is suppressed and the lab once decided to check other hormones without being asked, they did FSH, LH, prolactin, cortisol and 17Beta estradiol, all of which were fine. When I lowered my ERFA to half the dose I'd been taking last year my TSH didn't alter over 9 months although my FT3 and FT4 went down and I didn't feel good, but a brain MRI for another problem showed nothing wrong with my pituitary. I've asked both Dr Skinner and Dr Peatfield if I had a pituitary problem and both have said no, that the problem is more the thyroid feedback loop, which is the same as Rod mentions. I don't know why that should be a problem but wonder if it's what's happening to you.

This website: toopoopedtoparticipate.com/... is by a woman who was in a car accident as a baby and suffered pituitary damage which wasn't noticed. She's sorted herself out nutritionally and with Armour and it has some useful free info and an informative weekly newsletter which I get, although I haven't bought her vitamin program. I found her from one of Dr Lowe's teleseminars when he interviewed her.

Also if you take thyroid hormones including T3 your GP should write on the blood test forms something like 'patient taking T3 therefore please test FT3'. That way the lab should include it, mine do.

[PinkNinja in reply to Framboise]

Thanks for this. It's very interesting. As I said in response to another comment, I have had several head injuries as a child, two resulted in loss of consciousness and concussion so there may be a connection.

My previous GP had mentioned testing my prolactin levels in relation to another problem if it didn't improve but she retired before she did it and I completely forgot (I had severe depression at the time). I can't remember why she wanted to test my prolactin but it may be because of my periods or the miscarriages and pregnancy problems but I can't remember now.

Thanks for all the info. I will definitely have to get this looked into.

[julietta in reply to PinkNinja]

Hi Carolyn , this is really interesting. Just like Framboise, and you, I have a suppressed TSH (0.01 on armour) which, when I reduced my dose did not change. I just assumed this meant that my thyroid had packed up completely , and it's interesting to hear others are the same (and many thanks for that info, Rod.)

It may be worth your getting the other pituitary hormones tested as you had the concussion as a child and the miscarriages, I shall certainly look into the tests that Framboises suggested . I was on Thyroxine for two years and my TSH wasn't suppressed - it only became so on armour. Was your TSH always suppressed since you we're tested?

Anyway well done for the brainwave - it's amazing where it led!! And good luck with everything.

[PR4NOW]

CarolynB, this is a website I ran across in Mary Shomon's newsletter by another intelligent woman who suffered a miscarriage due to thyroid problems. If you are not familiar with it you might enjoy taking a look. PR

hypothyroidmom.com/

[PinkNinja in reply to PR4NOW]

Thanks for this. I shall have a look after tea I knew it was my thyroid. Even the gynaecologist at the hospital commented on how cold I was and the dry, flakiness of my skin. I never had that feeling warm all the time like you are supposed to.