Seen endo today.. she thinks plutirity gland problem

[Spotydave]

Hi all . I see the endo today which was booked ages ago i was going to cancel.. but she went right into it and thinks i have a plutirity gland problem... I have to have some different bloods and mri ..scan. thats worried me a bit

[NWA6]

Why does she think you have pituitary problems?

[Spotydave in reply to NWA6]

She recons my tsh wasnt hi enough at the start of problems.. the thyroid bloods didnt sit as she would expect for thyroid and i have a slight sensory problem on right side of face.. which moves about a little bit from cheek to just about ears.. also i keep having slight dips feeling rough here and slight blured vision which comes and goes.. bit it was the bloods that made her think it.. she said it t might not be but she feels it might be

[SeasideSusie Remembering]

Spotydave

I've just looked back at your first post on the forum where you said

"Results in January 2018

Tsh ...4.7. Miu/l. (0.4---5.0)

T4. .....7 pmol/l. (9----19)

2nd test results this week (8/11/18)

Tsh.......4.7.miu/l .......(0.4----5.0)

T4.......9pmol/l. .......(9---19)"

Unfortunately I must not have seen it or I would have replied and told you that with a normal, low, or slightly elevated TSH with a low FT4 then this would suggest Central Hypothyroidism which is where the problem lies with the pituitary (Secondary Hypothyroidism) or the Hypothalamus (Tertiary Hypothyroidism). It might have saved you a few months of being messed about by doctors.

At least your endo seems to know something, not many would have heard of this.

[Spotydave in reply to SeasideSusie]

Grewt to hear from u ...So you think it could be the case susie ? Is this treatable ??

[SeasideSusie Remembering in reply to Spotydave]

Well, I'm not medically trained as you know, but that's my guess.

This is my standard response when I see results like those (copy and paste job from a previous reply to another member, excuse my laziness )

I am not medically trained, and I am not diagnosing, but what could be indicated here is Central Hypothyroidism. This is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low.

TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In Primary Hypothyroidism the TSH will be high. If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

However, with Central Hypothyroidism the signal isn't getting through for whatever reason. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).

Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed bestpractice.bmj.com/topics...

and another article which explains it ncbi.nlm.nih.gov/pmc/articl...

You could do some more research, print out anything that may help and show your GP.

As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before. You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email Dionne at [e-mail] for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.

It seems as though you have a pretty good endo so if all goes well it might be worth sending her name to ThyroidUK to add to the list of good endos (unless she's already on it and that's where you found her).

[Spotydave in reply to SeasideSusie]

Thanks susie. I have to confess im a bit worried now

[SeasideSusie Remembering in reply to Spotydave]

I don't know anything about Central Hypothyroidism other than what is in those articles. Try not to worry, my philosphy is that you can't change anything by worrying, it just wastes energy and emotion. I know it's easy to say but the ball is rolling now so hopefully you'll get to the bottom of it soon.

[Spotydave in reply to SeasideSusie]

Cheers Susie

[SeasideSusie Remembering in reply to Spotydave]

Keep us updated please

[Spotydave in reply to SeasideSusie]

Will do susie ... Thank you

[Angel_of_the_North in reply to Spotydave]

It's treated just the same as any other hypo, BUT you have to keep reminding GP not to look at TSH results, just free T4 and free T3 as TSH will always be low and won't reflect thyroid hormone levels. They do an MRI or CT scan to see if there is a physical problem with the pituitary and in case you need other hormones as well eg sex hormones or cortisone. I had CT scan as it was years ago. A friend had MRI and said it was very noisy, and a bit claustrophobic, but basically OK.

[Spotydave in reply to Angel_of_the_North]

Yes i have 8 blood tests to have.. i think including testosterone..cortisol etc.. and an mri .. she did say it could be sex hormones causing problems

[Angel_of_the_North in reply to Spotydave]

The only bad one is the insulin stress test, sometimes called an adrenal stress test. As long as you aren't having one of those you'll be fine. My friend was allowed to take her own CDs for the MRI

[BadHare]

Take a look at The Pituitary Foundation website: pituitary.org.uk/information/

The Pituitary Foundation runs lots of local groups around the country.

If you look at the website, you might find one close to where you live.

Like this forum, the people are lovely & friendly, & will help

& advise you as much as possible, or put you in touch with someone

who can help. Ask questions & try to get as much information as

possible so it doesn't seem so scary. It's not knowing about it that can

be the worst part, & I say that from experience. I was diagnosed with a tumour 6 years ago, but think I've had it all my life.

If you have a small micro-adenoma, depending on whereabouts it is, it might just cause some hormonal irregularities such as hypothyroidism, & could be treated with medication. If it's larger macro-adenoma, & big enough to press on the optic nerves or arteries, you might need different medication or surgery. The MRI doesn't take too long, & isn't too unpleasant to go through especially if you can choose music to listen to. It's noisy, but I listened to my favourite radio station, & nearly fell asleep during my last MRI, so it's not as bad as a trip to the dentist!

[Spotydave in reply to BadHare]

Hi badhare great to hear from you thanks so much for the info i will definitely check that out.. i was abit taken back when i found.my antibodies and Thyroid problems. Now im even more taken back as it seems far more serious.. she asked.me so many questions about libido pains etc.i was with her ages And has ordered 8 blood tests aswell.. i was going to cancel but thought sod it lets go and.see what they have to say

[BadHare in reply to Spotydave]

Hi Dave,

It seems like you have an excellent endo, so I'm really envious!

Every one I've seen has been useless, but luckily The Pituitary Foundation & Thyroid UK have made up for this, & I've had the right help to get better.

Find out as much information as you can before your next appointment, & keep asking questions if you're not sure about something your endo says. The meetings near me are every few months on a Saturday morning, so look up your local group & recruit a relative or friend to go along with you. It's good to have a second set of ears in these circumstances, & you can bribe them with the promise of tea & biscuits. pituitary.org.uk/support-fo...

Mel

[Spotydave in reply to BadHare]

Hi mel do you have pit gland problem?? Hopefully she is good.. my fingers are firmly crossed... She explained about a surgery aswel if needed a d what happens..she to cover everything...right down to my libido and testis .. she was checking my eyes by waving about . She wanted to know all my health history and my parents and even made me call my parents to find out when he had hes stents put in. She wanted to know anything and everything i was in the about an hour id say ..

[BadHare in reply to Spotydave]

Yes, I have a micro-adenoma. It’s caused havoc with my hormones, though the worst issues are under control thanks to TUK.

Your endo is very thorough, which is just what you need. Hopefully you’ll have your scan soon, then she can fix you up & have you mended in no time! 🤗

[Spotydave in reply to BadHare]

I like your thinking .. lol how did they treat you ???

[BadHare in reply to Spotydave]

Badly, in as much as they haven’t. For me the endocrinologists have ranged between wholly useless to utterly farcical. 🤬

I treat myself for secondary hypothyroidism that they insist I don’t have. My imaginary symptoms are kept at bay with NDT & T3. 🙃

[Spotydave in reply to BadHare]

It definitely sounds like i have a good endo ... I was not even going to bother to see her.. me and my nurse practitioner both agreed that we could deal with hashi together... I was worried after all the stories i here about endos

[Spotydave in reply to BadHare]

Mended? From what im reading that isnt going to happen ... What symptoms did you have that started it all off

[experimental1 in reply to Spotydave]

I'm in the US and finding a knowledgeable endo is quite difficult. The good ones I've checked out don't take insurance, so if you want to see them it's cash or credit card. Stick with your doctor. How fortunate you are to have someone who knows more than TSH.

[Spotydave in reply to experimental1]

Well i hope you do find one.. its terrble when you are ill and docs are only interested in max cash flow..

[experimental1 in reply to Spotydave]

It's true. I understand that in the UK, one can see a private doctor if you can afford the cost. But we understand that a doctor who's doesn't take insurance or isn't connected to the NHS can run the tests they want and prescribe whatever they feel is necessary to restore health or function to the patient. If we lived in an ideal world, that would be every doctor and every healthcare system. Wish you success on your journey to wellness.

[Spotydave in reply to experimental1]

Yes thats right.. thank you and i hope you get sorted aswell😁😁😁😁

[Joesmum]

Hi spotydave,

I’m central hypothyroid ( pituitary)

Happy to answer any questions.

[Spotydave in reply to Joesmum]

Hi joesmum.. great to hear from you ... Im a bit taken back again like i was with hashi .. ive already lots some worried me some was better that was pit org support .. it seemed more reasuring on there..

[Spotydave in reply to Joesmum]

Ive added you as a follower thanks joesmum 😁

[Spotydave in reply to Joesmum]

Hi there... How did they find the problems?? What was yr symptoms??

[Spotydave]

Hi Janey.wwll i fell off a shed and almost cut off.my tongue and fell through a tree and my best one i fell off a bridge when i was 18 drunk lol no cars hit me.when i landed.on the road below oh and.i also cracked.my head whem i hit it on awindow sill and had a trip to a and e lol

[Spotydave]

Bloody hell that dont sound good.. glucagon ?? Whats that ..this is abit new to me... Ive got bloods to do this week

[Hidden in reply to Spotydave]

Glucagon is kind of the opposite to insulin. It helps keep blood sugar high enough, while insulin keeps it low. So they work together hormone.org/hormones-and-he...

[Spotydave in reply to Hidden]

Thanks jnetti...

[Spotydave]

Bloody hell....

[Spotydave]

Its to do with the pancreas ... and glucose i think

[Spotydave]

I think they have started the tests quite well so far.. ive been reading about different problems with it.. its quite worrying

[Hidden]

By the way, when people talk about a tumour it doesn't mean its cancer. But any kind of growth inside the skull can be a problem because there's not enough space. And any problem with endocrine glands (pituitary, thyroid, pancreas etc) messes things up

Given your history of falling on your head it seems more likely to do with that than a tumour! So hopefully you don't need to panic.

[Spotydave in reply to Hidden]

Thanks for your support jnetti... Hopefully so ... Id take the choice of thyroid all do over pit gland ..ive just seen my gp whos os a nice one. I know shes not qualified but t she said you have only had out of range (7) low t4 once. That was jan 2018 . Then low normal in December (9) so that it corrected itself .. i said yes but tsh was still in range and not high.. she then said. You would think there would be more evidence in the general bloods.. i said i guess so .. so she was very surprised..