• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Questions about the drug Clomid for low LH, Fsh, testosterone, estradiol levels in context to ME/CFS

Messages
9
Hello,
I am a male, 22 years old, ME/CFS for 3 years, Bell scale 20-30.

I would like to test Clomid / Clomiphene because of my low LH, Fsh and decreased testosterone, free testosterone, estradiol levels, prolactin is borderline high. Coherently I have most of the time decreased erythrocytes, hemoglobin and hemocrit values, which are probably strongly related to testosterone, because it stimulates the production.

I have a few questions, about it, maybe someone can help me.



1. Question to ex-Clomid users, I am worried about the body self production of the pituitary gland after stopping the treatment, will it return to the pre-levels? Has anyone checked their levels after stopping? (and maybe took it above 3-5months)

2. Side effects with Clomid- According to reports, the eye&vision problems are in the foreground. I already have very dry eyes, I guess due to the long-term use of Accutane (acne medication) before ME, but it may be that ME also affects these dry negatively, I don't know.
My main concern about taking Clomid with ME is due to increased intracranial pressure and Empty Sella, which is often the case with ME. I strongly suspect that I have increased intracranial pressure, but I didnt have an Empty Sella diagnosed (MRI 2.5 years ago), but it can still arise due to persistent increased intracranial pressure, so maybe I have it now. Do you think I can still test Clomid? In the package insert there is at least nothing contraindicated in the case of increased intracranial pressure. I would start with 12,5mg every other day.

3. Hormone values while taking it, has someone who took it checked their estradiol - I wonder if it also increases estradiol, which is very low in my case. On the one hand, Clomid blocks the estradiol receptors, but on the other hand, more testosterone leads to the formation of more estradiol...
I also ask myself if it has an impact/increases the cortisol, Dhea, aldosterone etc. levels during the process? So wheather it also support/improve the adrenal fatigue in some way and I dont have to take adrenal cortex/ glandular while taking Clomid...?

4. So overall the question to those who have tested or still taking Clomid for lower hormone levels, how was & is your experience with it?
I have already tested testosterone creme for 3 months, which was very, very stressful every morning and I don't want the self-production to suffer sustainably, which is clearly the case with the replacement therapy. Because of my lower LH levels it is clear that at least to a part my low T is related and the oral intake is much easier for me and especially more causal than the testosterone replacement therapy. If I still don't have an Empty Sella, I still ask myself why
several men with ME have such low LH & testosterone values and what exactly is the cause, despite the same disease, only some have it and others with ME have normal, age-appropriate levels.
My first considerations were that increased intracranial pressure alone may have a negative impact on the hormones, or that maybe additional sleep apnea or bad sleep have also a negative effect (dont know if I have apnea, at least I dont snore), or maybe because of the adrenal fatigue (but which is only reponsible for 5% of testosterone production)
I think a lot of further reasons, which are unknown to me, are possible, maybe someone has other ideas. Besides doing a lot of exercise and sport, I actually have/do everything that promotes good testosterone values (diet, vitamin D, zinc etc., good figure, BMI etc.)


Thanks in advance and for reading


Best regards
Joel
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
Hi Joel,

I'm sorry to hear about your hormonal levels. I don't have any experience with Clomid, but a few researchers have linked hormone irregularities in ME to a dysfunction of the hypothalamus.

I have most of the time decreased erythrocytes, hemoglobin and hemocrit values,

In case you haven't already read about this, problems with red blood cells can sometimes be due to a deficiency of B vitamins.

Best wishes.