Fludrocortisone in addition to hydrocortisone, anyone?

[Mgh]

I am hypopituitary following a macroadenoma and transphenoidal surgery in 2011. I am on the usual replacement hormones. My symptoms at present are pointing to trialling Fludrocortisone.
I would love to hear from anyone who has not got primary Addison's and has experience of taking Fludrocortisone or an alternative?
Thank you

[KitKat]

Did you ever get to try fludrocortisone? Would be interested to hear how you got on
KitKat

[Mgh]

An update.
In early July I sarted on 50mcg (half a tablet) Fludro each morning. As the summer progressed, I experienced less 'fuzziness' and was able to live rather than just exist. My regular BP raised slightly which has been helpful. However, it still drops to a level that indicates hypotension. I continued to take BP, sitting, standing etc. so I could record this for any future appointments.
My endocrinologist appears not willing to engage with GP. He has asked for her advice. In the absence of any Endo input my GP prescribed the Fludro. I checked this out with a family member who is a specialist in older medicine so I felt happy to try the Fludro while waiting to see a specialist in hypotension that my GP referred me to.
I saw the hypotension specialist this week. He did some BP checking and found a drop of 40 in the systolic reading between lying down and standing up. His initial advice is to take the Fludro at night for three weeks and take my BP in different positions over the three weeks before checking in again with him. He also gave some common sense advice like not standing or sitting still for periods of time. He also advocated the wearing of support tights. (I don't even like wearing ordinary tights!).
I saw the speciaiist privately as it seems impossible to get a NHS appointment. (My GP referred me for an ENT appointment in May 2018. It was to be the 20th November 2018. I had a letter this week cancelling that appointment and offering me the 10th April 2019). I could be dead in the meantime!
My medical records are distributed between different NHS trusts so I supplied copies to the specialist this week. He will check through my blood tests and medical history before seeing me again in three weeks. He should then be in a better position to advise on further tests/treatment. I am due an endocrinology review next month which he would like to tie in with.
At present I have increased my hydrocortisone as I have a sore throat and temperature but other than this blip, I have been in a marginally better state since starting the Fludro. I would love to hear from other secondary AI/Hypopituitary people who have taken fludrocortisone.

[Carl]

This sounds a similar experience to what my dad went through with Fludro - totally not connected to Pituitary disease. He had postural hypotension to the point of passing out on standing and it took a while to get it sorted. His GP trialled different doses and timings of Fludro before getting dad into a position where his blood pressure was more stable. He did get there in the end though, which isn't the most positive reassurance I can give.....but there you go! Carl.

[Mgh]

Thank you Carl for the info about your dad. Good and helpful to get your response. If I recall correctly, your own condition was very similar to mine at the start. Your posts are usually positive and helpful so please bear with me while I unload! Do other people feel this need sometimes?

I think what I am finding most difficult still is finding a route to the relevant medic who is willing to diagnose and address my increasing number of comorbidities (from 2 age 59, to 10 in seven years since). I don't know which issues may be connected to one another and I find what to report in medical consultations increasingly difficult because of this. I am also finding it difficult to gauge what level of activity I should be capable of now. I was naturally a very active person but at present, I am no longer able to do the long walks with my husband and friends of my age and older. At present, I have a heavy cold with fluctuating temperature and possible chest infection so once again I have to reign back and cancel my few planned activities. Feeling sorry for myself!
I find trying to keep tabs on the many different conditions demanding and stressful as I am no longer 'firing on all cylinders'. It would be so helpful to have one medic who could take an overview and integrate and coordinate medical care. When I am unwell and suffering from brain fog, I find this difficult to do. I know some GPs do this very well but it seems somewhat of a lottery. Originally, I felt the endocrinologist wanted to take a wholistic view but that has changed in the last couple of years. However, I feel the Endo should be interested if I am taking a second steroid! Does taking the Fludro ever lead to the possibility of decreasing the Hydro?
Over the years I have tried to keep good records and to prepare well for appointments. I think I might well not be alive still without doing this and without the information and support from the Pituitary Foundation, the nurse and members. Thank you.

[Carl]

Unload away!

Having 'just' a Pituitary condition would be bad enough, without other conditions in the mix. Whilst the brain fog is a characteristic symptom, fatigue can be due to (in my case) lack of Hydro, lack of Testosterone or indeed could be a symptom of something as yet unknown. So many pituitary related symptoms conflict with one another, as I said that's before you bring anything else into the mix.

I am also a member of the Addison's Disease Self Help Group (ADSHG) and people with Addison's always take Fludro as well as Hydro, I've beard them described simplistically as Cortisol (Hydro) the sugar hormone, and Aldosterone (Fludro) as the salt hormone. In Addison's patients who have primary adrenal failure their adrenals no longer make either hormone and have to take both Fludro and Hydro, whereas with Pituitary patients with secondary failure we normally only take Hydro. Has your Endo said whether the Fludro is connected with your Pituitary condition or is it something else entirely, I have seen it said that some Pituitary patients do go on to need Fludro, but I'm not entirely sure why, whether it is connected with some kind of 'atrophy' of the adrenals over time because they aren't making the Cortisol we need and this goes on to affect other parts of the adrenal gland. I do believe that Fludro does have a slight positive effect on steroid cover, but each drug does different things......Do you crave salt? This is a common occurrence in Addison's patients and often indicates low sodium which in turn can be lack of Fludro and/or dehydration.

Other than that it is keep on doing what you are doing, taking notes, trying to get appointments with the doctors you do trust and together keep trying to narrow down the list of what is going on....trial and error unfortunately.

[KitKat]

Hello MGH,

Like Carl's family, my father was started on fludrocortisone for low blood pressure as a result of a weak heart (he has a pacemaker), in his early 80s. He hates being dependent on medication and finds it difficult to get the balance right between the fludrocortisone and his other cardiac medicines, which I think, weirdly enough, includes a diuretic that counteracts the fluid-retention properties of fludrocortisone. I don't have a lot of detail as he lives on the other side of the world and I only hear about his latest ups and downs over the phone.

Fludrocortisone does seem have some cognitive benefits for memory and emotional well-being, according to one German endocrinologist who has studied this. Hydrocortisone does have mild fludrocortisone-like effects and most people with pituitary adrenal insufficiency don't need fludrocortisone. But the human body is an extraordinary thing, and there is an exception to every rule. If it helps in your case, then surely the GP an continue too prescribe it for orthostatic (postural) hypotension? If you are at risk of passing out when you stand up, then the fracture risk from a fall should be taken into account. People can end up with nasty facial injuries from blacking out unexpectedly. Geriatric specialists are usually more aware of this than endocrinologists, whose typical caseload is younger so they may have less experience with the damage that can happen from falls.

Best
KiKat

[Mgh]

Thank you both for your encouraging replies. I am coming to the end of the three week period on the changed timing of the Fludro. I have been taking the 50 (half tablet) in the evening whereas I had been taking it since July in the morning. I am not sure this is a fair trial because I have had a chest and sinus infection during this time. I have doubled hydrocortisone and just finished antibiotics. I am starting to taper back the HC but intend to do so very gradually. Getting the dose correct seems to have been a constant dilemma for me. I hope that with the addition of the Fludro I will be able to strike the right balance and timing soon.
I would still like to find others who have secondary AI like me who have experience of taking Fludro. Can we be so rare!?
M