I've been thinking about going privately to get my pituitary function tested. It's not cheap, but it's driving me mad not knowing if my thyroid/autoimmune problems could be to do with damage to my pituitary gland.
Has anyone had theirs tested? Any advice on places to look into for testing? I don't have much knowledge on the whole subject but from the little I've learned here and reading I've done online I'm convinced it's all connected and I'm not going crazy!
What exactly does this pituitary test entail? I have hypopit / central hypothyroidism and so can help a little here. I also have Hashimoto’s, so I have issues both ends. ie primary and secondary. I have undergone many tests on my pituitary to ascertain which hormones are under functioning.
Firstly have you ever had a raised TSH and if so how elevated did it get?
Hello,
So I've been positive TPO antibodies. My tsh was high according the MMH private blood tests, I'll attach the chart. My tsh is dropping, and my T4 is low. This all points to central hypothyroidism right?
My GP won't even diagnose me with hypo never mind take notice of what else I have to say. They fobbed me off and told me high TPO means nothing, just that I may develop hypothyroidism later on. But the symptoms I'm having and the private bloods I've had done over the past year show that my t4 is low.
I had a massive hemorrhage during an emergency C-section nearly 2 years ago and my health has been bad ever since. I'm convinced that the blood loss has caused damage to my pituitary gland (also known as Sheehan's Syndrome) but it's rare and not well known. GPs already know very little about thyroids so I feel like I've got no chance getting them to take me seriously unless I have solid evidence to show I'm not making it all up.
TSH results over the last 12 months
This is an interesting chart.
To me it demonstrates that a slightly elevated TSH can right itself, and not necessarily point to a thyroid disease.
Edit to add - of course there is central hypothyroidism which I often think of as a precursor to overt or sub clinical hypothyroidism if someone was to test often enough to discover.
A slightly elevated TSH is could certainly be suggestive of Central Hypothyroid. Mine looked very similar. What are the results for your FT4 and FT3?
The red herring is the antibodies. They can sometimes throw a spanner in the works because it’s assumed that you have a primary failure on its way but you can have both. Central and Hashimoto’s. As I do .
My ft4 was low, ft3 was normal. Antibodies still high.
You need to see a very sympathetic Endo. Low FT4 , slightly elevated TSH . This is not really GP territory.
Could you pay ?
I am considering it but I've read so many horror stories online that Im worried about wasting my money on someone that will not take me seriously, it's not cheap 😭
I’ll PM you
Yes we post a lot about Sheehan syndrome
rarediseases.info.nih.gov/d...
These may include an inability to produce breast milk, irregular or absent periods, hot flashes, and a decreased sex drive. Other symptoms may include fatigue, headaches, low blood pressure, and hair loss. In some cases, the symptoms occur immediately and may be more severe and sometimes life threatening. Sheehan syndrome is diagnosed based on the symptoms, clinical history and exam, laboratory testing, and imaging studies.
GP may not have even heard of it
You would need to see thyroid, pituitary and adrenal specialist
Not worth it while your vitamin levels are so terrible
More important to get your very deficient ferritin improved
I'm onto it! It's only been a week but I started an iron supplement last week which already seems to be helping, unlike the rubbish the GP prescribed.
Would it be pointless then until my vitamin levels have improved?
SlowDragon I'll be seeing my GP next week to discuss my recent blood results, I've wrote down everything I intent to say but I'm worried he's going to blame my symptoms on my low ferritin and fob me off like last time. Surely with the positive TPO, dipping TSH and low t4 he can't blame my symptoms purely on low iron?
Post above yours with helpful info on iron
TSH often sluggish with Hashimoto’s especially with low vitamin levels
Do you have any other hormone imbalances that you're aware of? The reason I ask is that, through a Medichecks blood test, I discovered that I have sky-high prolactin levels that prompted my GP to request a contrast MRI of my brain and specifically my pituitary.
I was wondering if an MRI scan might be something you could ask your GP about as it might reveal any damage related to your large post-partum bleed, or any other issues (such as pituitary adenomas) that could be contributing to your symptoms and blood results.
As well addressing the points mentioned by the knowledgeable folks above, of course.
Definitely something I'll discuss and see if he'll consider, thank you.
I have recently received a diagnosis of central hypothyroidism. Blood tests going back to 2007 (not that frequent back then as thyroid dysfunction function was not suspected) show my highest reading of TSH as 3.35.
My FT4, specifically from 2014, kept falling from its highest point of 14 to 10 (10 being 8.8% of the range used). I had many symptoms. My TSH also fell during that time to 1.15 lowest (mainly around 2) and never rose above the highest 3.35. Hence, my hypothyroidism was missed.
I paid privately for blood tests and had some NHS blood tests from early 2023 to June this year. I presented a table of these blood tests to show the pattern of falling FT4 and falling or static TSH. I presented this to my GP along with a NICE guidelines paper by Persani et al on Central Hypothyroidism to argue my case. This paper is very important in that it's used by NICE and very informative on Central Hypothyroidism. There's more in my biog.
Persani paper:
ec.bioscientifica.com/confi...
Hi Agitator,
I’m a similar story. Missed by GP because my TSH was always in range despite having an FT4 of 10 (10-22). I had decades of being unheard, tragic really and so, so frustrating. By the time an Endo figured it out, the damage was done. What caused confusion too was that I also have Hashimoto’s. So it’s damaged at both ends. Primary and Secondary. Although my Endo suspects it’s a Hypothalamus issue which would mean Tertiary.
As soon as I was placed on thyroxine my TSH disappeared without trace. Unreadable. It was so grateful to be heard that it finally shut up shop and went south. I often think that it must have been SCREAMING to be heard ! If my poor pituitary had functioned my TSH levels would probably have been over 100. The moral of the story. Never give up the fight.
I think there are probably many more like us and many more undiagnosed or misdiagnosed. What gets me is that it's all so unscientific and shambolic. (Did biological science at uni - moons ago).
My TSH has also dropped very quickly and dramatically once on 100mcg Levothyroxine. That freaked my GP out but, luckily, my private endocrinologist (gave up with the NHS one) had written in a document to GP to ignore the TSH.
What concerns me most is that the diagnosis and management of thyroid dysfunction seems to be getting worse not better. And that patients are really not believed or listened to.
I agree. The lack of diagnosis, treatment and understanding is catastrophic. This illness has affected so many members of my family. All Central. Clearly genetic. It has impacted us all terribly, through the generations. I think we’re a paper!
I do at least have a lovely GP who admits “ I don’t understand your thyroid bloods so I’ll leave those for your Endo”.
If only they all were like this instead of pretending they know what they're talking about 🤦🏻♀️
What do you mean this is a NICE guidelines paper?
It's one of the source papers used and quoted in the NICE guidelines for assessing suspected hypothyroidism. Click on Basis for Recommendation in link below and scroll to Persani: cks.nice.org.uk/topics/hypo...
How much does it cost? Are you able to get a medical loan to spread the cost perhaps?
I feel none of us can share the worthwhileness of any test.
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