Susan's Place Transgender Resources

Hi all,
Not a subject I lose much if any sleep over but simple curiosity all the more so as I have not yet seen a thread which deals explicitly with it (may have missed out though?)

Since being a member here, I have however seen a very large number of posts saying how important it is to do HRT under medical supervision. No problem with that, I also do my HRT under medical supervision, at first with a knowledgeable GP and, just as an extra precaution, more recently with an Endocrinologist.

As it happens, I had already started a DIY HRT before I met the GP (there was no one to go to where I lived before) and he was fine with the regimen I was using, as was the Endocrinologist by the way. The only thing he did that my GP hadn't done was have me do an MRI as my prolactin levels are very high and he wanted to be sure that this wasn't due to some sort of tumour in the pituitary gland. As I had no symptoms otherwise I wasn't very worried and, as expected, the scan was clear. 

Anyway, I presently do blood tests once a year and, apart from my FFS surgery which required a few extra visits, as I have never had any health issues, I basically only see a doctor once or twice a year period.

So given all the emphasis on medical supervision for HRT, what sort of frequency are others seeing their doctors at and why? 

Secondary question, who has ever actually had a health issue directly linked to their HRT,  what was the issue and was it only linked to HRT or was it linked to other underlying health issues too?

Basically, I 'm trying to get a feel for what is myth and what is reality on questions which concern almost all of us.
Hug
Donna

well there are several questions and several difforent answeres to each :P,

I see my gyne,,,, yes gyne in lue of endo. every 2-3 months right now.  still real fresh in the HRT so she wants to get a balance on my hormone levels. once they are good i belive it will go to an anual. the bigest reason i stress the medical oversight, is to find the right levels. and to do so safely, as for what could go wrong, im not sure but better safe then sorry.

Thanks Sheala,
I can understand that until HRT is stabilized, it is worth doning blood tests more often than once a year but afterwards? Also, I am very aware of the increased risk of DVT associated with high E levels and even had some direct experience of that following my second FFS surgery when I had a small superficial clot at the site of the IV just above my wrist. Quite scary though!
I also monitor my own blood pressure but it stays in a very comfortable range for my age, 7 to 8 over 12 to 14 (morning readings), and has never gone outside of that.
Hugs
Donna 

I did not cast a vote because I most likely have a higher frequency due to just starting. I started HRT May 28, 2013. So May 28,2013, then 3 months later and the next is Feb 2014 (6 month interval).

My Doctor was concerned about the prolactin level too, which was just slightly above normal, which he said was fantastic. The well visits take 3 months to schedule and trans kids are walk in.

At the 3 month visit I asked to increase my E and he said is fine where it is. Last week I e-mailed through the patient portal requesting to add dutasteride to my E, AA and finasteride scripts for maximum dht blocking. His reply was there is no need because my t is extremely low (lower than the test measures, <20 ng/dl). 

Point being, if I was self medicating I would have self medicated 2 times the E and 2 to 3 times the AA and I would be taking dutasteride and finasteride.  I would use erroneous antidotal data to make a dose and formulary which would most likely in the long term have had negative health consequences.

Donna, you look beautiful with a natural feminine appearance, hugs.

I started hormones this summer, so it's very early for me to tell.  As of now, I've had bloodwork done 3 times and have seen my endo 4 times.  It seems that she wants me to go once every three months which I feel is a bit excessive; however, she is the doctor and thus makes the rules.  She told me that she was going to take a very cautious path before I started because she wants to avoid any complications.  While I appreciate the caution, I do think one can be overly concerned.  Still I have to play by her rules and go 4 times a year because that's what she wants.  As it stands, I've had no complications other than these weird feminization side effects that I can't explain.  ;)

The reason some of us don't condone self medicating is because there is always a chance of a complication.  If one were to arise, a doctor would be able to catch it when a patient may not notice anything is wrong.  When you are playing with your endocrine system, things can go wrong, especially if you don't know what your doing.  That's why it makes sense to have a doctor monitoring your hormones.  There may be some people that can do it without any issue, but I still think it makes sense to have a doctor just in case (if you have the luxury to do so).  Also, self medicating is against the law in many places, so that's a big concern as well.  I'm sure the authorities don't care much about people buying estrogen without a prescription, but why take that chance if you can easily get a prescription.  Having said that, I know there are people who don't have the luxury of getting hormones the proper way because of various issues, so I can understand DIY under those circumstances.   

Hi LTL and the others who have replied so far.
Make no mistake about it, I am not advocating self medication at all. What I am trying to get a feel for is given the type of issues you can encounter with HRT, what is the correct level of medical supervision, what specific risks are we talking about and what medical supervision in particular provides forewarning about potential health problems ?

For example, I think we all understand that HRT increases the risk of DVT but what type/level of medical supervision is required to get forewarning about such a risk? What specific tests tell a doctor that you are in a danger zone, excessively high E levels? If it is BP, you certainly don't need to see a doctor to find out how you are evolving.

Same thing regarding liver damage but this time I think the answer is pretty clear. ALAT (10 U/l for me after 3.5 years fulltime HRT) and ASAT levels do provide a warning signal.

While obviously important, finding the right regimen to optimize the transformational effects of HRT is a very different issue and was not part of my question.
Warm regards
Donna


P.S. For those interested in such figures:

Free testosterone:  2.5 pmol/l or 0.7pg/ml
Plasmatic Oestrogen: 367 pg/ml or 1346.9 pmol/l
Prolactin: 438 mUI/l or 20.6 ng/ml

and I feel fine in every way!

P.P.S. Thank you for the compliment Cynthia!

My endo does every three months for the first year, then drops to every six months thereafter. And then again with 3 month intervals for the first 6 months (so, 2 visits instead of one in the following 6-month period) after a dose change or post-op (even without dose change, since changing the T levels can amount to changing the *effect* of the dose).

For me personally, I started on a level of E low enough to be prescribed to menopausal cis women and no AA... and the first 3-month visit found markers of liver damage serious enough that I got yanked off HRT until I'd had an ultrasound and some other blood tests, after which we halved the dose again and retested at 3 months for a year from the abnormal result (meaning, 15 months at 3-month intervals instead of 12). My endo said that if it hadn't been caught early, the first real symptom could have been liver failure. Her current thinking is that at about 2 years post-op for me, she'll probably consider it safe to fall back to yearly visits. She'd generally expect only a year of closer monitoring post-op, but after my scare, she's more cautious. Now, I'm unusual in a couple of respects - both the super low dose and the unlucky liver - but I'm quite happy to be careful at this point!

(Once I've hit a point where I consider "primary puberty" to likely be over, I may well consider eventually dropping the endo's supervision and going to a GP for standard blood panels once a year, since dosages won't matter so much then and it's a heck of a lot more convenient.)

Donna, I do blood tests on a quarterly basis, though last year I only had 3 sets of tests.

Mine, however, are not so focused on HRT any more, but rather on my general health.  My liver and kidneys did well on HRT.

For those just starting HRT, following your prescribing doctor's protocols is best, but it is important for some to make sure that they are not having an adverse reaction to the medications.

I get blood work almost every 3 months he not only checks my hormone levels but everything else kidneys,liver you name it he checks it out to make sure everything is working the way its supposed to in my body. Been doing it that way for years. Even when I'm low on Vitamin D.

Vert interesting feedback with huge differences in approach from one practitioner to another.  My own GP, who has worked with a lot of people from the TG community (that's how I found him), seems to consider that with a "normal" treatment and assuming no other health issues, there is very little risk associated with HRT.
For those who are on a stabilzed treatment (very much my case) do you actually see any significant variation in blood tests from one quarter to the next?
Hugs
Donna 

I get bloods about once a year, I see the endo every 3 months but that is because of referral rules here. I get an implant about every six months.

As for adverse reactions, yes, when I first went on Progynova I had a massive reaction with my E levels going to uncontrollable levels. Unknown to me at the time! But I was monitored every few months to begin with and it was caught before any problems occurred.


I'm now very stable and I agree Donna I do not feel that I have any increased risks except for breast cancer, I carry the BRACA mutation and my sister and mum both had breast cancer.

I also started recently, nearing the 6 month mark now.  At first, my doc (a naturopath) had me come once a month, then every 2 months.  I hit a mild problem on that 3rd visit, my creatinine level was just a shade high.  Creatinine (and related BUN) are indicators of kidney health, my doc blamed the Spiro for that one.  I felt more or less fine, only a little discomfort while urinating, no big deal.  But she cut my Spiro to 1/4 of the level and added Finasteride plus Progesterone as AAs, in place of the reduced Spiro.  I miss the Spiro, not sure if the Finasteride/Progesterone combo is as effective, I feel a few twinges of the old T feelings now and again.  However, the mild discomfort while urinating has gone.  Coincidentally, my doc did a urine test for protein when the high creatinine was reported.  No protein was found in the urine.

After month 3 and 4 being sequential visits, my doc dropped back to a 2 month interval.  I'm due to go back to her now, but I have added insurance as of the new year.  My GP said he would prescribe HRT for me once I was established in treatment, I'll see him next week and ask about having him assume the role of principal provider for my HRT prescriptions and tests.  I have been paying out of pocket for most of the HRT to date, by having my GP do the check ups and prescribing, I can get most of it covered with the insurance.  He is rather clever at making "alternate" diagnoses in order to have the insurance cover some of the otherwise disallowed bloodwork and prescriptions.  For example, insurance won't cover HRT as HRT, but they will cover a lot of it for a BPH diagnosis  ;)  (  :icon_suspicious: You didn't hear it from me  :icon_suspicious:).

Monitoring is a play it by ear thing.  Your endo will decide the frequency of visits and blood work depending on a few factors like age, general health, and what effects the meds have.  If everything is going well expect to see the endo less, if it's not then you may be in for monthly visits.

My experience was first recall at 6 weeks, then every 3 months for 18 months, now on 6 monthly.  My med dosages haven't changed in that time, although I'm reconsidering pellets.

My doctor basically told me to come in a month after starting HRT to see where my hormone levels were at, 3 months after that to check them again, all he checked both times were T and E levels, and then when both hormone levels were within his ideal range, he said "Okay, you're good to go. I don't need to see you for a year now." And that was it. One annual check of hormone levels is apparently enough according to my doc, and he didn't run a single one of the other blood tests that people usually mention to check liver function and other things.

Apparently I have a doctor who pretty much thinks that for someone of my age and health, hormones aren't the least bit dangerous.

Quote from: Carrie Liz on January 02, 2014, 08:34:36 AM
My doctor basically told me to come in a month after starting HRT to see where my hormone levels were at, 3 months after that to check them again, all he checked both times were T and E levels, and then when both hormone levels were within his ideal range, he said "Okay, you're good to go. I don't need to see you for a year now." And that was it. One annual check of hormone levels is apparently enough according to my doc, and he didn't run a single one of the other blood tests that people usually mention to check liver function and other things.

Apparently I have a doctor who pretty much thinks that for someone of my age and health, hormones aren't the least bit dangerous.

this is also what my endocrinologist (who is PhD + MD) says, pretty much.

My endo has me visit twice a year, with blood done at those times too.

At first, I was on spiro, estrogen, and progesterone. After about a year he added finasteride to the mix. After about a year and a half, we stopped progesterone. At about the 2.5 year mark, my estrogen dosage was increased.

My next appointment and blood work will be in May to see if things need adjusting any further.

Great to see so many responses and quite an eye opener for me. Looking at the results so far, both the poll and the comments, which may be skewed a bit by the fact that so many people are still relatively new to HRT, I am really very surprised by how much medical supervision many people are getting, especially the hormone assays which are relatively expensive compared to the standard blood tests. It is very different from the attitudes I have come across here and has me asking myself am I missing out on something or is there just a lot of overkill going on everywhere else?
Anyway, it would seem like we collectively represent quite a good business opportunity for the Endocrinologist community.. :) :)
Hugs
Donna

Quote from: Carrie Liz on January 02, 2014, 08:34:36 AM
My doctor basically told me to come in a month after starting HRT to see where my hormone levels were at, 3 months after that to check them again, all he checked both times were T and E levels, and then when both hormone levels were within his ideal range, he said "Okay, you're good to go. I don't need to see you for a year now." And that was it. One annual check of hormone levels is apparently enough according to my doc, and he didn't run a single one of the other blood tests that people usually mention to check liver function and other things.

Apparently I have a doctor who pretty much thinks that for someone of my age and health, hormones aren't the least bit dangerous.

Quote from: su->-bleeped-<-ime link=topic=156796.msg1324615#msg1324615 date=1388680479
this is also what my endocrinologist (who is PhD + MD) says, pretty much.

My endo scared the hell out of me by saying she had a trans patient who had a stroke.  Then she insisted that we do everything by the book and cautiously because of "all the risks I could face", (her words).  Suffice it to say, I was a little freaked by that, but I did enough homework beforehand to know what I was getting into. I think she wanted to make sure I was aware of what could happen and make sure that I was 100 percent.  As she said, there is no going back from this and I consented and said I'm glad to hear that.  In any event, it went slowly for the first few months and she was worried about my hemoglobin and low t rate at first, but everything is now going fine and I'm at a good level.  I suppose her method is a bit weird, but it works.   

Quote from: Donna E on January 02, 2014, 11:41:18 AM
Great to see so many responses and quite an eye opener for me. Looking at the results so far, both the poll and the comments, which may be skewed a bit by the fact that so many people are still relatively new to HRT, I am really very surprised by how much medical supervision many people are getting, especially the hormone assays which are relatively expensive compared to the standard blood tests. It is very different from the attitudes I have come across here and has me asking myself am I missing out on something or is there just a lot of overkill going on everywhere else?
Anyway, it would seem like we collectively represent quite a good business opportunity for the Endocrinologist community.. :) :)
Hugs
Donna

WRT endocrinologists, maybe. I'd say that the ones really making the money off of us are the "gender therapists". I wasted a few K on one of those and after I'd come to terms with being TS there was pretty much no benefit to our sessions. In the end it turned out that I didn't even need the referral letter that she gave me, as you can buy pretty much anything over the counter without a prescription here (SE Asia). As far as endocrinologists go, I have mixed feelings on the necessity of needing one in the early stages of HRT: yes, of course it's best to have a professional checking up on things, but it seems there is a relatively standard starting dosage assuming that your hormone and liver/kidney blood tests are within normal ranges. If I could do it again I'd probably just start with the starter dosage myself after having a blood test (assuming, of course, that all parameters are within normal ranges) and then see an endocrinologist after three months to get extra input regarding increasing the dosages.

(I should clarify that my endo runs a liver function test, standard CBC panel, cholesterol and renal tests, and checks for elevated prolactin levels. She also tests T, but does not believe E level monitoring is useful. All of these are tests a GP can order and interpret, so that's why I'm willing to switch once I feel I'm stabilized for life. And I'm one of those who was youngish, in great health, and had no risk factors; just luck of the draw that I had a bad reaction, I guess. The dose I ended up with is in the range often cited here as "too low to possibly cause any changes," so I can't complain - the flip side is that I'm clearly fortunate enough to be *very* responsive to E, which is why a super-conservative low dose was still far too much.)