Panhypopituitarism ???

[Brittpenn]

I have panhypopituitarism, my thyroid works, but isn't functioning because the pituitary gland is not signaling it to. Being put on Prednisone plus my 50 mcg of levo still.. said I should feel better with in two weeks..I'm nervous my mother was on Prednisone and said it's not good to be on it for too long...?? Is this true I'm scared and my doctor said to call him if not better in two weeks. Idk how long he has plans for me to be on it. July 1at otherwise is my blood draw, fasted at 845 am ...3 months away.

[Joesmum]

If you are panhypopituitary, what other hormones are you replacing please?

[Hidden]

If you have panhypopituitsm you will be on a replacement dose for life, but it is just a replacement dose to make up for what you are not making. Your mother was probably on Prednisilone for another condition such as asthma or arthritis which would have been a much higher dose. Regarding your thyroid, as your pituitary isn't working then it is not good testing TSH & T3 & T4 needs to be tested & your T4 needs to be on the top half of the teens. Have a look on both the Pituitary foundation website pituitary.org & the Addisons website addisons.org.uk for more information. I have hypopituitism & am replacement Hydrocortisone, it is a life long condition that you need to learn as much as possible about so you know how to advocate for yourself as many doctors don't understand or know enough about it.

[Brittpenn in reply to Hidden]

Yes my mom has rheumatoid arthritis he told me if I don't feel better in a couple weeks to call him on the show of Prednisone 5mg.I've only had two appointments with my endocrinologist I'm a little confused about the whole thing I just know that at my first appointment they did a blood draw I never did get the paperwork whatever he tested for was at 19 he said it was in normal range then I went back for an injection and he said my body should have reacted to it and even went up to 25 or 30 but it stayed at 19 he said that my pituitary gland just isn't signaling stuff to work my thyroid itself is okay but it's just not working because of that that's all he told me and I also honestly have a hard time understanding him lol he's foreign and I don't know maybe I'm not that smart hahaha??? but I'm struggling to truly understand sometimes this is all the information I have right now

[Howard39]

Joesmum is correct. This condition usually affects many different hormones.

The specialist has placed you on steroids assuming you have an adrenal issue. Do you know the results? Also it’s important to be tested for dhea too. I can only guess that they think your cortisol is low. That’s only really addressing half the potential issue on the adrenals.

I don’t know what dose you are on so it’s not easy to be specific. I am on long term steroids for a different condition and as I recall over 7.5 mg long term ( and I mean several years ) could potentially cause side effects. One of them is high cortisol. A saliva test is the best way to check dhea. This is a private test through Genova or Regenerus. The later you can do yourself. Genova needs to be signed by a doctor/ specialist or you can go through thyroid uk.

You really should know your cortisol results with 4 saliva readings over a day. It’s much better to see them broken down as some people’s do vary. I. E they are not all low.

If your dhea levels were low too you could consider adrenavive which is natural. At this stage unless you are on massive doses of prednisone there is no need to be overly concerned. But it’s good to have a plan for the future.

Your condition affects the tsh level. Without results it’s impossible to comment on your thyroid meds.

Were you tested for b12 d3, folate and ferretin together with thyroid antibodies?

Usually the sex and growth hormones are affected. Again you’d need to check if they were tested.

Most people I’ve come across find themselves deficient in vitamins and have thyroid antibodies.

A gluten sugar free ketogenic way of eating is a good idea.

If we have more information we can help further.

Best wishes.

[Brittpenn in reply to Howard39]

Thanks, and ya my brother hormones was off. some others as well as for now I'm just on those two medications I'm starting my prednisone this morning and I get my cortisone shot in my neck today this is for a different injury though

[Brittpenn in reply to Howard39]

5mg and yes you are right he said something about adrenal yesterday

[Howard39]

Hi

5 mg is a small dose so nothing to be overly concerned about. You do need all those results though. Dhea, full cortisol throughout the day. Full vitamins, antibodies and sex hormones.Also diet being good.

Hopefully though you’ll feel less tired once the steroids kick in.

[Brittpenn in reply to Howard39]

I'll call today and have them sent to me