Hey all,
Post no 2 today...sorry.
My free T was 1.94 (0-4.2), my total was above midrange.
I was prescribed compounded T cream.
Been taking it for 3 weeks, I have oily skin, I'm overheating (temps 37.1-37.3), swelling up, gaining weight.
Should I even be taking it? I'm planning to test Free T this Wednesday to check levels in case they went up too much?
Thank you! X
Incoguto,
Are you on oestrogen & progesterone replacements?
Hey radd , I'm not, no, went to two holistic gynos, they said I might need a bit testosterone from sex hormones perspective. Here are some results:
Estradiol 210 (21-312)
Progesterone 20.19 (1.2-15.9)
Total testosterone 50 (7-79)
Ratio P:E2 = 109
SHBG = 75 (19-155)
DHEA-S = 274 (75-410)
LH = 2.76 (1.38-5.47)
FSH = 2 (0.56-14)
Prolactin = 25 (5-26.5)
I've seen that the recommendation is to check free t after 3 weeks first to see if it's within range and then after 3 months, so I'm having test tomorrow for that after 21 days exactly.
Do you think I should check anything else in the morning? Thank you 😊
Incoguto,
You sound over replaced with T. It is more usual and recommended by both the NICE Menopause Guidelines and the British Menopause Society to take O & P first to ‘normalise’ the hormonal cascade, (meaning low free-T might naturally correct itself). There is also evidence that women suffer more adverse side effects of T when supplemented without O & P.
And if O & P levels don’t need replacing, then theoretically T shouldn’t be low and if it is, it’s worth initially trying to manipulate other influencing hormones/transporters than to just replace T. Your total-T wasn't low.
You ask what should be measured tomorrow. Contry to previous thought latest guidelines suggest not all free-T is biologically active and some protein bound T is bioavailable. Therefore, both total and free should be measured at the same time. BMS states it is the total-T that provide a more accurate representation of therapeutic response than free-T. Also free-T labs may not be representative of biological activity.
It is better to only change one thing at a time to avoid confusion as to what has caused what. You saw how splitting your thyroid meds dose raised SHBG and lowered cortisol. It may be SHBG variation has now caused free-T to raise together with your supplementing.
Is your compounded T cream horribly expensive? If you decide to stay on T get private gyne to write to your GP with the magic words ‘libido loss” and you might get Testogel on the NHS. Many of us do. Also I still think you are over repacked with thyroid meds and on the wrong T4:T3 ratio as said before, and would recommend you seeing a private endo who’s more likely to consider thyroid and sex hormones, in fact all hormones within the endocrine system as opposed to a gyne’s focus only on sex hormones.
BMS Testosterone replacement in menopause - thebms.org.uk/wp-content/up...
What you need to know about testosterone and menopause ... patient.info/news-and-featu...
Thank you radd this is very helpful, I'm getting free and total testosterone checked tomorrow morning. These were also checked last year in September and both were midrange, I don't think I ever had these low.
I have been to several endos and none of them offered any advice apart from telling me I'm hypo and need to keep trying raising meds. That's my prolactin tends to go high, my cholesterol is high, I'm still overweight and need iron IVs.
Unfortunately not in the UK, my T cream cost 50 euros for 100 days and it is compounded in Germany.
I was just wondering why I'm being prescribed T cream if my t levels aren't low?
Incoguto
Your Total T at 50 (7-79) is 60% through range and I wouldn’t see that as deficient and warranting supplementation. Especially given other hormones remain unstable at this time.
DHEA-S at 274 (75-410) isn’t low (DHEA converts to testosterone) and SHBG at 75 (19-155) is low (indicating an excess of bound T isn’t likely).
I don’t know why your gyne has prescribed T. You could ask him?
Are you saying that SHBG at 75 is low? This test was done before starting T cream. Been only on it for 3 weeks, at 2 mg a day
He said he likes to see top range T, it could make difference to my fatigue etc.
Incoguto,
No, SHBG at 41% not that low but I was referring to the risk of excess binding. For simplicities sake perhaps I should have said it the other way around - SHBG isn’t elevated so risk of too much T being bound isn’t high. Equally as most T is protein bound to SHBG this can be a good indicator of T levels (with other results) ......... except when T levels are too high this reduces SHBG in females, whereas in males it will increase.
Another way of measuring whether you need T is to use the Free Androgen Index calculated by total T/SHBG × 100 and if in the lowest quartile (<1%) extra T is supposedly required … .mdapp.co/free-androgen-inde...
Replacing deficient T can make a huge difference to bone and muscle strength, stamina, improve mood, etc but in UK we only get prescribed it if we say we have no sex drive 🤷♀️.
Was % is your T cream?
Hey radd total T came back at 71 (7-79), waiting for free T. So in 3 weeks my total went up from 50 to 71. Not sure what to think, but probably a good idea to wait for free T.
I have applied the last T dose about 6 hours before the blood test, not sure if that would have an impact? Don't know much about T 🙈
Well, you gyne said he wanted you top of range but I would tell him of your symptoms.
If it was me I would also question him about supplementing when guidelines are suggesting it's not needed.
He did, but it's only been 3 weeks, I wonder how long does it build up for?
I questioned him yesterday, but he still hasn't come back to me...
radd my free T just came back 3 (0-4.4).Still zero response from my doctor.
I don't think T is causing the oily skin
‘Been taking it for 3 weeks, I have oily skin, I'm overheating (temps 37.1-37.3), swelling up, gaining weight’.
If you’ve suddenly developed these symptoms since starting T, I think it prudent to assume they are connected. It may be the sudden introduction or because levels are now too high at top of range (females only require a tiny bit compared to males).
As previously said you can not judge available levels by only the ‘free’. T mostly binds to albumin (most abundant protein) and SHBG, and unlike thyroid hormone that has to be ‘free’ for bioavailability, T is considered (to an extent) bioavailable when attached to albumin as so weakly bound it has androgenic potential.
That’s why another angle of measuring T levels is to use the FAI (in conjunction) and your result indicated you do not need to supplement.
What are your cortisol levels like? If you don’t have adequate (catabolic) cortisol, high (anabolic) T effects can intensify.
Both holistic gynes are in the US, so maybe there are different guidelines there, not sure. The issue is, he's not coming back to me so I reduced to one pump a day.My blood cortisol is normally over midrange or high in range.
I think it might be the thyroid, my neck is swollen for a few days now at the bottom where the thyroid, thyroid also enlarged. Ny ft3 came back 98% of range now 16 hours after my second dose...
‘Ny ft3 came back 98% of range now 16 hours after my second dose...’
Well, that is much too high!
I’ve explained before more isn’t always better with thyroid hormone replacement meds. There are several mechanisms that deactivate very high levels of T3 (and F4) making meds useless. Your hypo symptoms are evidencing this.
That's 6 weeks after splitting my dose.
I am due a pit MRI in a couple of weeks, one prof suggested Cushings because I don't do well on smaller or bigger doses, regardless of what I'm taking
Incoguto,
Your cortisol levels dropped a month ago in response to the change in your thyroid med dosing regime "from 18.4 or 20.4 to 11.1 (range 3.7-19.4) ". This was a normal response and your cortisol levels are in no way indicative of Cushings Disease. I hope you aren't paying for this medical care 🙄
healthunlocked.com/thyroidu...
Your thyroid meds will work with the right essential cofactors which you obviously haven't hit on yet. You may have worked through the different levels and combos of thyroid meds but perhaps your iron or nutrients were not optimal at that time.
Things that helped my meds work best were not being over medicated, eating gluten free and more protein, and addressing a zinc deficiency. If I was you I would stop the T, reduce thyroid meds and hold for 3. months to see if there are improvements.
That was a month ago and my latest cortisol result is high in range so is my ACTH.
He explained that I can't go back to my original doses of NDT back in 2017, because my cortisol raises each time I raise my thyroid meds.
I had iron IV last year and everything else optimal. I consulted also with Paul R and he also suggested I need MRI of adrenal and pit. My aldosterone is very high, my ACTH is high again. There is also something called Cyclical Cushings.
I have done what you suggested, many times trying to lower Armour below 2.25 grains, it is worse, much worse and my ft3 ft4 are almost zero with TSH 0.008. I used to take 4 grains and was well for years.
Incoguto,
Yes, you don’t want too low FT3 or too high, just an individualised middling.
Interesting re the suspicion of Cyclical Cushings. I’ve read about it on the Pituitary Foundation site but never heard of anyone having it, although there’s always been a lot of metabolic variation going on around the forum.
I previously had low aldosterone and several 24 hour urine collections lugging them to the GPs. I was drinking gallons of water then also 🙄. I suspect urine collection will be involved in your diagnosis regarding high aldosterone.
Usually the renin-angiotensin system and potassium regulate aldosterone through negative feedback loops, but ACTH can also stimulate on a lesser level. In fact the Stim Test (for low cortisol) is sometimes used for assessment of aldosterone production at the same time as cortisol. You should also have renin and aldosterone blood tested for the ratio.
Elevated aldosterone is due to an adrenal fault. Elevated ACTH can be because cortisol is low, and when high indicates a pituitary fault or ectopic (tumors in the lungs or other glands, even the thyroid). Cushings investigations usually involve a dexamethasone suppression test which is supposed to suppress ACTH and cortisol (as opposed to the ACTH Stim Test usually seen on this forum). This can confirm a pituitary tumor by cortisol levels dropping, or an ectopic if they don’t.
A CRH stim test can eliminate an ectopic tumor should ACTH and cortisol increase. There’s also a dexamethasone-CRH test that suppresses and provides artificial hypothalamus stimulation at the same time (not sure when that is used).
Your doctors will have to perform these tests when your blood levels are high, but the unpredictable fluctuations and phase frequencies of Cyclical Cushings make investigations complex. Keep us posted. This could be a large piece of the jigsaw you've been trying to complete 🤞.
Apparently high aldosterone can be from being hypo due to inability to increase thyroid meds due to cortisol going up. This all started when I was on 3 grains of Armour dropped from 4 grains, and after a very large dose of prednisone I was taking for a skin issue (40mg for 2 days).
My doctor wanted me to fast track and go straight for the MRI. All other tests take a long time, it is extremely difficult to diagnose. I've read stories of people whose cortisol and ACTH weren't even much elevated and they had Cushings.
My TSH just never budges, even when tft's are low, it is just strange.
If they don't find anything, then I can make peace with this and keep tweaking the dose. On 4 grains of Armour I was in range , I had no symptoms and now struggling to get up to 2.5. It really is puzzling.
Paul R thinks that there is a possibility I may need to try T3 only, I've been through many combos in the past 7 yrs. Definitely last resort, but still an option.
Thank you 🤗 it's not easy, but I need to keep going.
Incoguto,
I have no experience of Cushings (I just like reading a lot 😁).
Also I might be wrong but as I understand although MRI's and contrast show most things, a tumor isn't always visible. Therefore, if nothing is shown I would not be 'making peace' but further investigations if unusual labs continued.
It might be worth posting to ask if another member has been diagnosed with Cyclical Cushings, how long it took, what the treatment was, etc. Alternatively contact the Pituitary Foundation or the equivalent at where you live.
Same here, reading all medical research available, we should start a book club 😀
That's true, it doesn't show always. My issue is my consultant is in Ireland, I'm living in Poland. I will need to find a good doctor here and its difficult since I can't leave the house most of the time now.
That's a great idea, I will post and contact the foundation, thank you radd 🤗
You don't mention why you was prescribed it.
Testosterone replacement in the UK is based off symptoms, sadly having to state low libido as reason. As a rule only prescribed to women already on hrt after adequate replacement of oestrogen but when symptoms still persist. With a knowledgeable specialist bloods might only be tested just to check you are not already top or above range before starting. Symptoms that should be the reason for testosterone replacement are brain fog, joint/ muscle aches and pains, low mood, increased energy, a general well-being feeling.
Testosterone could replace many unnecessary pills we pop for some ladies in my opinion.
Because of fatigue and a lot of symptoms, which could be due to thyroid. He said it could help a little. My libido cab be low sometimes, but again, that's me being hypo too.
Thank you 😊 I am still using it, every second day now until I hear back from my doc. I think I might have noticed that it made me calmer, but the jury is still out.
It can take up to 6 months to feel benefit, with me it was 3 weeks and boy it was amazing. Yes a lot of what I thought was thyroid related was actually either down to testosterone or I feel testosterone could have helped thyroid wise..difficult to call! Definitely help with fatigue and energy as was finally able to exercise.
I know after about 5 months on T the brilliant effect lessened but still know it's doing good compared to beforehand. My levels have dropped so perhaps I need to increase a little to get same effect
Oh interesting, thank you for sharing it sparkly 😊 do you remember if you were low to start with?Maybe you do need an increase?
My bloods were 0.5 ( 0-1.6) when prescribed.Tested last month and currently 1.1 so yes I could increase. Problem is i keep forgetting to put it on 🤦🏼♀️
Ohhh you need to set some reminders for yourself 😀 what is your dose may I ask? I take 2 mg
I'm on 1 pump tostran every other day. 1 pump has 10mg of testosterone hence every other day as female daily dose is said to be 5mg of T. Hopefully when licensed in UK foe women they will bring out properly measured dose rather than guessing games when using sachets or trying to dispense half or quarter of a pump measure.I use to put 💪😁 in my calendar to remember which days but then I forgot to look in calendar.Going to set alarm now to remind me
Thanks for reminding me 😂
Hi Incoguto - just to reassure you, I've been supplementing T off and on for over 10 years now. I had a slightly over range test a few months ago, so reduced dose from daily to twice weekly and it dropped to very low, very quickly. It may be my biochemistry and other other factors involving HPA, but a thyroid doc recently confirmed that it will drop if not used regularly.
Thank you Jamima 😊 my starting is 60% of range, now at 90%, so was thinking of taking it ever second day, worst case it would drop to the 60% right? Just thinking of options!
Yes, exactly. I was really surprised how quickly mine dropped - 2 months approx from top to bottom of range. But I also had low frees, oestrogen and cortisol so that may have an impact on dropping so quickly.
Oh dear yes, low frees lower testosterone! The rest could be an effect of lower T I think or low thyroid. Hating this thyroid game today!
Yes, just working on the frees and cortisol to see what happens when they're a little higher then re-intro T. It's a very useful addition if you need it.
Have I been glutened?
Just been told I have hyperthyroidism 
I have been back to drs for results 
Have 2 doctors have been struck off for prescribing Thyroxine?
