I spoke to Dr. Irwin Goldstein (an expert in urology and endocrinology) who reviewed my blood results and he said that I may be suffering from hypothyroidism because of my high TSH levels in multiple blood tests.
I did some research into the symptoms of hypothyroidism and many of its symptoms are the same symptoms we have been experiencing, including: brain fog, sexual dysfunction, fatigue.
I also noticed that some of the members’ blood tests revealed a high TSH level (above 3.0).
Knowing everything we know about this drug’s mechanisms of action and its skewing of hormone ratios, I wouldn’t doubt that Fin can mess with the Thyroid/TSH.
I was diagnosed with hypothyroidism in August. I was prescribed 50mcg Levothyroxine (same as Synthroid). I also tested positive for antibodies, ie: hashimoto’s disease - so I have antibodies that are attacking my thyroid. After being on it for about 2.5 months I retested my TSH which came back the same as the previous test. I’m now on 88mcg for about a month. Apparently it can take a while to get the right dose/blood levels.
If you’re assessing your TSH level, most doctors now recognize 3 as the high, not 4.5 or 5.5 which most tests have as a range. And if you’re diagnosed with Hyopthyroidism they like to get it down to a 2 or lower.
As for how I feel, I have more good days than before the meds, but I still think it’s too early to tell (especially considering my level didn’t change after the initial dose). My guess is this can be a part of the problem (for me) and not the full story, but who knows. There has been a pattern since starting the meds - at about week 3 I felt great, better than I had for many months, then a bit of a crash in week 4. With the start of the meds I ended up leveling off feeling a bit better overall by the 5th week, we’ll see what happens in the coming weeks after the increase.
I think it’s great u have a recognized diagnosis. What was your TSH? Synthroid (or equivalent) can take time to find the right dose. I think most Drs like to titrate it by doing labs every 6wks or so. once you find ur right dosage u’ll be feeling much better.
good luck!
jack
Improved, however not 100%. Overall I’ve had many more “good” days since treatment than before, especially since the increase. These past two weeks have been particularly good. Some actual spontaneous erections, good sensitivity, good erections, good morning wood, and most importantly, good libido. Again, what I consider a good day isn’t always 100%, but at least there’s something happening.
The most promising thing is this - when starting the treatment and after the increase, there’s a point when I really felt the meds start to take effect. I think it over acts at first and you become a bit Hyper (heart palpitations, insomnia, increased energy, diarrhea, etc). It’s at that time I started to feel my libido, sensitivity, etc come back, seeming like there is some link. As the Hyper symptoms eased and my body adjusted, so did my libido come down a bit and level off. So hopefully I’ll get the dosage right and have some better days ahead. We’ll see.
That is very promising. I recall you had a doppler and reported 50% bloodflow to the penis, as well as poor sperm tests (low motility/count). Will the thyroid treatment help with these issues?
What did the doc say your TSH should ideally be at, and how did you end up being diagnosed (ie, did you go from doc to doc until one finally did something?)?
I recall that your T is midrange. Since it appears the thyroid treatment is having an effect on your libido, will the thyroid treatment also help raise T somewhat? Will you continue to take bloodtests to measure your T levels?
This must have been a surprise, to go from having no spontaneous erections for months/years, to all of a sudden having them again. Can you elaborate on the sensitivity issue?
For me, the decrease in sensitivity began 3 days after starting the drug, when I had my first bout of ED, reduced ejaculate, and noticed tingling sensations throughout my penis and scrotum (like the nerves/tissues were being affected). Since the drug, nothing has changed. My penis continues to feel “rubbery” and lifeless, as if the tissue has changed within it (fibrosis?) AND the actual foreskin itself (ie, I can pinch it and not feel pain). It basically feels like the nerves in my penis and scrotum have “died”, and they are no longer pleasurable to touch – instead, it feels like I’m just touching my arm or leg.
So when you speak of sensitivity, are you referring to what I am talking about? If so, has the thyroid treatment brought the sensitivity BACK, as if the nerves have “regenerated”?
Finally, has the treatment brought things “back to size” down there, if size was indeed an issue for you since Finasteride? ie, penile shrinkage/loss of size/girth, constantly retreating when flaccid? Same goes for testes – whereas before they were empty/saggy/shrunken, are they now big and “full volume”?
Sorry for all the questions, I’m just very curious as my TSH has generally been above 2.0 and was in fact 4.54 at three months off the drug, although it has gone down and ranges from 2.0-2.8 since.
No problem Mew, I’m just sorry I haven’t been on the board lately. I’ve been having income related issues so my attention has been elsewhere in my life.
I’ve only had one TSH test since treatment, about 10 months in on 50mcg. My TSH was about the same as when I started - 3, so no change. It had been as high as 4.92. He said, considering I have hypothyroidism and show symptoms as well as antibodies, he’d like to get it as low as a 1 or even lower. It’s not really a concrete thing. One needs to consider symptoms as much as levels. As for diagnosis, I had been checking for it for a while but no doc saw it as a problem, until my level FINALLY went over the high mark. Otherwise, doctors don’t recognize it (or anything as everyone here knows). I quickly made two appointments with new endos for second and third opinions before getting on meds. They both did bloods, looked at my old tests and confirmed. The last doctor turned out to be a more forward thinking doctor who was very helpful and informed. He’s the only one who actually tested for antibodies. This all took place in the last 3 weeks of my insurance, the last test being on the very last day! Two years of testing and I find something as I’m loosing my insurance.
I’m taking a new TSH this week - 10 weeks after my increase to 88mcg. My doc said that I’m still on a very low dose and shouldn’t be discouraged if my TSH isn’t down yet. He plans to continue to move slowly with treatment and said it’s a long process.
I think my T has been pretty good overall since quitting. All the doctors I’ve seen said things look good as well as people on here like Hypo. There have been times when it was high. I’ve been very curious to see if my thyroid condition has had an affect on T, as I know it can. As with all things, I’m very anxious to get full blood work since starting treatment to see where I’m at. I still feel like something else is wrong and hope to figure it out somehow. I still get nipple sensitivity, pain and itching on occasion which I don’t understand, so who knows.
It looks like my financial and insurance issues will be worked out soon, so I’ll post all new blood work when I get it. Another thing my new endo has recommended is a scan of my pituitary. He feels my high TSH and high FSH are unexplained and wants to cancel out a pituitary problem. Someone with high TSH should have low T4 and T3, which I don’t. Most of what I’ve discussed with him was thyroid related since time was limited. I look forward to seeing him regularly on all these other issues.
It was a big surprise. I had very rarely experienced spontaneous erections over the past year and a half or so (actually, it’s coming on two years now…DAMN!). There really was a change after starting the meds. And it’s hard to realize or relate to how screwed up we’ve been until you get it back as a reminder of what you’re supposed to feel like. I’m sorry to say that I’m not back to normal as of now. When starting the meds I had periods of recovery and periods of crashing, where everything was connected - sexual function, sensitivity, libido, fatigue, brain fog, even pain in my neck/throat (the thyroid - yea, it can actually hurt).
As for sensitivity, yea, it’s the same thing I’m talking about. Basically numb toward the tip of my penis. No sensation. This is better when I’m having good days. It returns with the increase in libido, though it’s not as sensitive as it should be. I do find it easier to ejaculate as well. Before fin, I used to be someone who would ejaculate far too fast and just couldn’t hold it back for anything, and this is all connected to libido and sensitivity for me. Since fin, I need to concentrate very hard to ejaculate, if at all. Since treatment, I’ve found it easier and at times even impossible to hold back.
This was an issue for me. However it’s something that has gotten better over time, not just since treatment. I believe it was due to regular Viagra use and increased blood flow. As for the testes, they too got better over time however I still have days when they seem soft and small. Hard to tell what’s normal as I didn’t inspected these things that closely before.
If you had a TSH of 4.54 at some point and also show symptoms, I’d ask your doctor to look into it further. Definitely test for antibodies as well. My TSH seems to jump around a lot, which is very odd apparently.
So in the end, I’m not fully recovered. Not close as far as I’m concerned. After my increase to 88mcg I had the same experience as when I started the drug - About a week of improvement a couple of weeks into it, a crash, then a few weeks of improvement and then a crash (this is why I believe my TSH test came back the same as before treatment, I think the level readjusted). Only the improvement after the increase was better and longer lasting, and the crash not as severe. So I’m hopeful.
Again, I’m sorry for the delay in response. Let me know if and when you get blood work. Good luck.
Oh, and JG, I do think 3.6 is high enough to look into. I’m not an expert on any of this, but 3 is the new recognized high by most doctors, though some labs still use 4, 4.5 or even 5.5 as a high. This number has changed a lot in recent years. And this is definitely something that needs to be looked at in conjunction with symptoms.
I’m sorry to hear this too, but perhaps as you get adjusted to the meds and find the correct dosage, you will find the periods of recovery last longer than the crashes… here’s to hoping.
The critical thing is that you HAD IMPROVEMENTS – that means this IS NOT PERMANENT, it is just a matter of figuring out WHAT needs to be treated. The fact your new doc is sending you for a pituitary scan is very encouraging, please keep us posted on the results of that.
For me, its all along the shaft up to the head – sides, underside, and middle of the top especially. The 2 ring like nodules I have, veins and shrinkage don’t seem to help much, either.
Well this is encouraging, at least its possible to feel things down there again…
Since Fin, for me, I’ve actually ejaculated while semi flaccid – it’s ridiculous, I can’t hold anything back now, and after one round I’m usually done, can’t get it up again for hours whereas Pre-Fin could be back in the saddle within 10-15 minutes.
I believe maintaining proper bloodflow via Viagra before bed to stimulate nocturnals is certainly key to preventing possible fibrosis and to encourage smooth muscle oxygenation/prevent hypoxia. Seems it has been working for you, glad to hear it.
I will be testing this further, likely with a new doctor.
