A few questions

[TCP]

Hi.

I am new to the forum. I have so much to learn and understand. Sadly the pituitary team I see aren't that good at informing and I often get no answers.

I had a macroprolactinoma which was removed last year. I had an apoplexy in 2017. I have Hyperpituitarism and so need hydrocortisone and thyroxine. I have a few questions which haven't been adequately answered by the pituitary team at the hospital. I would be grateful to learn more from others. It also have EDS, POTS, Mast Cell issues and Small Fibre Neuropathy, IBS/Gastroparesis and scoliosis etc.

1. I was told this week that they might take me off hydrocortisone. Is this possible as I've been told that I will be on it for life?

2. What has caused my total body hair loss? I was told it was age-related? I know it is linked to the hormone issues, maybe thyroxine?

3. What is the recurrence rate for prolactinomas? I fear having another surgery. I had to have one as my vision was being affected. I was in severe head/face pain for 7 weeks after surgery.

4. Has anyone survived the recurrent sinus infections after surgery? I am to see the ENT specialist this year.

Any tips on managing things with all the meds etc? Thanks in advance.

[member_41389]

Hi
I think that you would be best discussing this with our endocrine nurse helpline. There are lots of very individual things that happen when dealing with the pituitary gland and its mis-firing.
In an attempt to put some perspective on your questions but I'm not a doctor so caution.
It is sometimes possible to recover pituitary hormone production if your surgery was what caused it. Basically the shock of someone hacking at it with a big knife can make it shut down some or all production, or over produce some hormones. In my case I got too much Vasopressin released a week or so after the operation resulting in hospitalisation for hyponatremia, fitting and losing my driving licence for a year. The simple thing is it takes a lot more time for this stuff to resolve than you'd expect.
I thing hairloss is often linked to hypothyroidism but may also be linked to hypogonadism.
I've no idea about recurrence of prolactinomas following surgery, in large part this will depend on how successful the original operation was. I assume you have discussed medical treatment with your endocrinologist. Prolactinomas often respond well to low doses of Cabergoline; both normalising prolactin levels and shrinking the tumour. See https://endocrinologyblog.org/2019/01/02/how-an-endocrine-disease-may-have-shaped-british-history/ for a flavour.
I got away lightly on the sinus infection front. I found a saline nasal wash helpful (but not very pleasant) and used the Neilmed squeezy bottle system sold by Boots and others. This helped keep things clear and I avoided the horrible smells that some people seem to experience.
Take care of yourself and keep asking questions there are plenty of resources on this site and helpful people who will answer as best they can.
Tim

[TCP]

Hi, Tim

Thanks for your reply. This is all complicated stuff and to honest I haven't found out a great deal from the endocrine or much help from neurosurgery. A lot of the doctors seem to contradict one another which hasn't helped. It sounds like you have been through the mill, too.

I noticed with the hair loss it came on long before I was diagnosed and once put on thyroxine it helped me. Then a while later it happened again and my dose was increased and again my hair grew back OK. Again this is happening and when I asked about it was suggested it was maybe age-related. I agree you can have some hair loss as we age but not as dramatically as this. I await my new blood test result and see what is going on.

Yes, I am on Cabergoline and the pituitary team want to wean me off it and I am only taking 2.5mcg per fortnight now. As far as I can gather 'most' of the tumour was removed. I realise that they can come back.

Yes, the sinus issues are a problem and I get the smell of rodents in my nose. That is not pleasant. I have been using the nasal rinses for months and they help to a degree and the full-blown sinus infection last month sent me into adrenal crisis, which was frightening. It was the first time I have self-injected and it didn't help that I was only given an up-take needle to administer the hydrocortisone.

My GPs aren't that understanding of the whole thing and they don't seem to grasp the urgency angle at all if I am unwell and cannot come into surgery. They also drag their heels regarding medicine supplies etc. I don't want to have to go into hospital if I can help it all. Funnily enough, the paramedics get the adrenal crisis thing and the doctors in A&E haven't got a clue about it.

Thanks for your help and the link. You take care of yourself, too.

Trish

[Carl]

Agree with Tim, the Pituitary conditions are often very individual to each person, never affecting anyone quite the same way. I had a non-functioning (it reduced my hormones not increased them) macro-adenoma removed back in 2013. My vision was affected and completely returned to normal after the tumour was removed. I used the Neilmed sinus rinse and it did help, although didn't stop me getting an infection and putting me in hospital for another 5 days having had an adrenal crisis. Luckily it was my only one I've had, but the nasty smell and general gunk did persist for a few months, it did all resolve eventually. My sinuses are mostly back to normal, but I'd say my left nostril does produce more gunk that it ever used to.

Hair loss for me was due to a total lack of Testosterone, my Pituitary no longer sends the right signal to make the T, and that is broken for good.....it caused me a lot of hair loss which has all returned back to normal now. I also take Hydrocortisone at 15-5-5mg at breakfast, lunch and teatime. The exact timings and dosing do flex a bit depending what is going on in my life, the Hydro does take a bit of balancing.....

Have a chat to the Pituitary helpline Tim referred to, if nothing else they may be able to arm you with some facts and a list of stuff to hit your own Endocrine team with. Sometimes it just takes the right thing/fact to trigger some action.

In my case the removed 'nearly' all of my tumour, I've had an MRI every 12-18 months since the operation, it has yet to start regrowing. Let's hope it stays that way....but some do and some don't.

Good luck, Carl.

[plum]

Hi
There's a document on the website aimed at medical staff, because this is all so rare and unusual and not something that they are likely to have dealt with before. My GP seemed quite pleased when I gave him a copy of the documents so it might be worth doing that also. With the understanding that you are both learning about this as you go along and that it is all so individual. What works for one person might not work for another, which is not helpful!

How friendly is your local pharmacist? Could you discuss this with them? eg over the situation of needle types etc. Pharmacies do seem to have a small room for private conversations with patients nowadays.

I don't like the 'aging' answer - I was told that my symptoms were 'age' and hence the tumour wasn't picked up until very late. I had some body hair loss pre-surgery which has still not quite recovered 8 years later. The hair on my head became quite sparse after surgery. whether that was due to the shock or to the hydrocortisone or the omeprazole i don't know. i did eventually come off the hydrocortisone and omeprazole. Any the hair on my head seems to have mostly recovered.

Good luck with this all and do contact the endocrine help line as the others have suggested.

plum

[member_41389]

Hi
There is one possible suggestion on the thyroid front, that is you can loose the production of Thyroid Stimulating Hormone; this would explain slowly deteriorating thyroxine coverage. When your GP tests for thyroid funtion the default test is called TSH and it's used because its relatively very cheap, quick and works for 99.9% of the population. Unfortunately with an adenoma, past or present you an be in the 0.1%, this is where I am at present with close to zero TSH production it took over 2 years for it to fail totally. The test which needs to be done is called FT4 (Free Thyroxine) and your replacement should be aimed to put you in the second quartile of the lab range, locally that is 12 to 22 so my target is between 15 and 19.5. If they do this test it won't stop you getting letters saying you're on too much Thyroxine but you can argue. If I can find the reference I'll post a link, I think it's actually hidden somewhere on the Pituitary Foundation website but the search function is often very much less than helpful.
Tim

[member_41389]

This is the item I was referring to on this site, I'll try and find the proper paper as well. https://www.pituitary.org.uk/news/2017/03/problems-with-the-assessment-of-thyroid-function-in-pituitary-disease/
Tim

[member_41389]

The paper I was looking for, long winded since it's a clinical guide to treatment of hypopituitarism as a whole. The bit of relevance to hypothyroidism is titled Central Hypothyroidism. https://watermark.silverchair.com/jcem3888.pdf?token=AQECAHi208BE49Ooan9kkhW_Ercy7Dm3ZL_9Cf3qfKAc485ysgAAAkcwggJDBgkqhkiG9w0BBwagggI0MIICMAIBADCCAikGCSqGSIb3DQEHATAeBglghkgBZQMEAS4wEQQM2pmYiczKlJhy38pgAgEQgIIB-pu7JMhnFmplrOzm6JdRLA9LHkSdPYbNQiUdXQth6M3SbQFkHeiOGEtkJi0tU1LrrS-grdq6TPY_SVtkjYiYrlha0JgfK34pycNjt4TPrZ68nOSv_0L64AqGe6UVm3vji01XAZOyzeHQpH2BFiv_9F5s6iJS1ER-sLBInVLga2QowNv92tx8WYyF6kbhUX6HHmOsts9xJKCKXXmvORvD6pdqxvDguipS2jLRHtm5Y5XrCIPzYTVkZqvLb--7wkW_l3l_Zom9Gs6_7IRm9gRzNAwygsJKTA9lm-Qurom8o5IFKSNCsbIjRqoDrNUrTTDQO9JDey9khFzHhmFBZLioO3f9cXnQ8YBaWx2EuqZ2_yy5-lKxPs3bEILoQRRq38dk3L36y-rIHB0KaWkLU-xRFOhNPEZF9AuJ7cqTPC_H5tF8qPB2fPaBSwejGJqww-Da1QlLEZ7-AbtH4wyylFNlwtdqJe54kIkjlQCIAG2k0uZLs4wNar0mt1FJ1vFLyB1QlNVl163Lo5W6pCuHob2unQ06ded9rfAcQJ9l54fgdLP5zTwmImS67ynuJ8mGEtVtm2CXche-S1UzdAquNWl7gFEhB7lBo0ItvwLMc9Ic9tneAtV5xLt24cxRCWGsC8coXP1zGSbznJgCnYKKZI0s9QUeS31kmb3BfaS4
Tim
p.s.
Sorry the link is so wierd but it's from the Endocrine Society pages.

[TCP]

Thank you, everyone, for your replies, much appreciated.~

I have now had pretty much continuous sinusitis and plenty of gunk and rodent smell. I've had three lots of antibiotics since the beginning of January. I was supposed to have an urgent appointment to see the ENT specialist after my consultation in February and I finally got an appointment for AUGUST! I am trying to get it moved forward as my breathing is bad and I keep getting infections and feeling very ill. I left a message on the endocrinology sister's answerphone but may not hear anything.

My GP surgery has made it hard for me to get the antibiotics and the Solu-Cortef. The younger doctors are tuned into it all but the older ones want to ration drugs and don't understand the whole adrenal crisis thing. I told them about the need for the injections and one doctor insisted on contacting the endocrinologists as she didn't believe me. The last Endocrinologist mentioned me coming off hydrocortisone but I still go into crisis. I have another Synacthen Test at the end of the month. I had all my hormone levels checked in February and there was no word of any changes. I am still on 75mgs of Thyroxine and 10-5-5mgs of Hydrocortisone. I also found out that my macro was a Gonadotrophinoma that old men usually get and they are rare! Even rarer if a woman gets it! I am aware that the Solu-Cortef is hard to get now and pharmacists are having difficulties tracking down any. This is applying to many other drugs now. I only have 2 injections at home. I managed to get the surgery to agree to another three but I don't know if I will get any. I hope other people are getting their meds OK.

Thanks for your help and all the best to everyone

Trish

[Carl]

The variability in the NHS really annoys me, so many times you see posts from people struggling like yourself to get drugs from your GP or a level of service from an Endocrinologist. I consider myself very lucky because it has been relatively straight-forward for me. My Endo wrote a letter to my GP right at the start saying I needed emergency injections of HC, this letter is scanned onto my patient record, and they have always been fine prescribing replacements when they time expire.

The constant infections/sinusitis suggest that something isn't right up there, my Endo/surgeon/ENT had follow up appointments with me after surgery and I had several ENT appointments where he inspected the sinuses to make sure there was no "crusting" that could habour infection - I think he was referring to blood scabbing. So although rather unpleasant and invasive, the ENT went up my nose and removed said crusting on several occasions and insisted on continuation of the sinus rinse, until I went back and he was happy all was healing well.

I've never heard of a Gonadotrophinoma! Don't be coming off that Hydrocortisone until a Synacthen test proves you don't need HC any more. Another annoyance of mine hearing of so many people where the Endo thinks the patient will gradually be able to be weaned off HC. Certainly in my case my Pituitary gland is permanently damaged, it isn't suddenly going to produce ACTH even assuming my adrenals even remember how to produce Cortisol.

As for getting drugs, I haven't had any problems, but as you said I've heard of the injectable HC shortage, so I'll cross that bridge when I come to it!