The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Hirsutism, thyroid and hormone profile

Discussion in 'Hormones' started by Ninan, Nov 14, 2014.

  1. Ninan

    Ninan Senior Member

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    I have severe ME/CFS and my period is quite irregular. I've also increasing problems with hirsutism, quite a lot of it. :( When it started a few years ago I did tests for testosterone but at least according to the doctor they were within the normal range. And I don't have PCOS so I guess it's the idiopathic kind of hirsutism.

    I have thyroid problems in my family but my testing shows nothing abnormal. Don't know what levels it was though or exactly what hormones they checked. I've read somewhere that there might be a link between hirsutism and thyroid disease.

    I'm new to hormones, so I'm a bit lost. But I'm going to ask my doctor to take some tests. The one's I've come up with are:

    Thyroid hormones
    Prolactine
    Insuline
    Testosterone

    Anyone has input on this? Or ideas on what tests I should do?
     
  2. CantThink

    CantThink Senior Member

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    You would want to look at the ratio of LH TO FSH - blood test taken on day 3 of your period/menstrual cycle. In a woman with PCOS the ratio shows LH higher than FSH. Normally the ratio would be 1:1.

    You might perhaps find this interesting: http://emedicine.medscape.com/article/121038-workup#1

    It is also really useful to get your SHBG tested at the same time as your testosterone levels. The reason being that if your total testosterone level comes up normal, the lab can take the total testosterone and SHBG results and work out much free testosterone you have. In females with hirsutism that don't have high total testosterone, it is useful to know how much free testosterone there is.

    Cushing's and adult onset congenital adrenal hyperplasia are differential diagnoses when considering PCOS (prolactinoma also).
     
  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Have you been gaining weight recently? As @CantThink said, Cushing's syndrome is something that should be investigated. Not many docs suspect it.

    You would need to have a 24hr urine free cortisol (UFC) and/or midnight salivary cortisol, sometimes done multiple times. Blood levels of cortisol are useless when screening for Cushings (high cortisol). High cortisol is usually excreted in spikes and not consistently from day to day, so you may need to test numerous times in order to catch the spike.

    An endocrinologist is the best person to do this type of workup. I would ask for a referral to an endocrinologist; they will know what to look for in your physical exam, history, labs, etc. Primary care docs aren't as adept in this area.
     
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  4. Sparrow

    Sparrow Senior Member

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    I don't have any suggestions, but I'm having issues with this as well. My testosterone and DHEA aren't elevated either.

    I remember hearing something about an insulin and testosterone-activity connection in women, but I can't recall the details. It was something acting like testosterone rather than raising actual T levels, I believe. Wish you all the best in getting to the bottom of it. If you do, please let us know!
     
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  5. CantThink

    CantThink Senior Member

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    I meant to add - there's a good forum called Cushing's Help which you might find useful. They will be able to help regarding the specialist testing that @CFS_for_19_years mentioned. Cushing's can be cyclical and it's hard to catch sometimes.
     
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  6. ahmo

    ahmo Senior Member

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    It's been a long time since I've had my thyroid tested, or any other tests. I've been altering my thyroid doses myself for some years. After listening to speakers in the Thyroid Summit some months ago, I decided my strategy of trying to keep my thyroid intake at the lowest level possible was incorrect, so I began increasing. I also at that time (June?) switched from commercial T3 (Cytomel) to compounded T3, as I learned there's cornstarch in Cytomel, a gluten cross-reactive food.

    Initially my adrenals became stressed if I tried to increase my thyroid dose. After some time, better methylation + detoxification, I was able to > my T3 doses. When I reached 70mcg, seemingly overnight, the downy hair that had been increasing on my face disappeared. Also the moustache I'd been watching for some years as some sort of thyroid indicator. My body and underarm hair remain scant, improved from non-existent before starting methylation therapy. My adrenals seem to be less stressed at last. Such a close relationship between adrenals/thyroid.
     
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  7. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    @ahmo, I'd like to comment on your post, but first I need to understand what you said.
    The > sign, literally speaking, means "greater than." So when I read your sentence, I read it as "I was able to greater than my T3 doses." :confused: And in addition to that, some people get their < and > signs mixed up (not that anyone here would ever have have that problem :lol:). So did you increase or decrease your dose? Thank you for putting up with my nerdish queries.:nerd:
     
  8. ahmo

    ahmo Senior Member

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    sorry, for me > is increase. I'll use words in future.:whistle:
     
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  9. Valentijn

    Valentijn Senior Member

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    My period used to be very irregular - I was on a 6-8 week schedule :p But B vitamins and/or a high dose of B12 seems to have fixed that. It hasn't done anything for my hirsutism, however.

    Something else which can stop my period in its tracks, even after it's started, is eating the foods which I react to by swelling up a bit. Digestive enzymes helps a lot in preventing both the swelling and the interruption.
     
  10. Ninan

    Ninan Senior Member

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    Thanks for all the answers. :)

    @Valentijn I think irregular periods are quite common in ME/CFS. I recall the second rituximab trial i Norway where quite a few of the women had irregular periods. The ones who got better from rituximab got back their old pattern. Maybe it's just a question of lack of energy. The body kind of saves energy by doing some things less often?

    About Cushings: When I gain weight I always put on on my belly and breasts. I have no bum and almost no hips. I figure that might be a sign of high coritsol. But last spring i took Florinef, quite a high dose and ended up with what I think was Cushings symptoms: I gained weight just by looking at food and lost muscle mass in my arms and legs. It did give me energy though. When I stopped I lost five kilos and half of my hair. It's growing back now (it's really too thick anyway) and I've continued to lose 4 kilos by keeping a paleo diet so my weight is now just a few kilos above normal (BMI 26). My conclusion is that I probably don't have Cushings or at least not a serious version? Since I've kind of tried it already. :whistle:

    @CantThink When reading about congenital adrenal hyperplasia I realized I am actually losing hair just on the upper sides of my forehead. Typically male pattern. I don't recognize any of the other symptoms though.

    @ahmo Very interesting with possible link between hirsutism and thyroid hormones. Since I have thyroid issues in my family I've been wondering if I would feel better on a low dose of some of those hormones even if my levels are within the normal range. I have to check them again.

    I've no idea if my adrenals are stressed or not? o_O :thumbdown: Guess I have some more reading to do. :sleep:
     
  11. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    There is a condition called Exogenous Cushing syndrome which is caused by taking glucocorticoids (same as corticosteroids), one of which I believe is Florinef. Whether this is what is causing your symptoms now, I really don't know. I think you might take a look at this article though:

    http://www.nlm.nih.gov/medlineplus/ency/article/000389.htm
     
  12. Ninan

    Ninan Senior Member

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    I've had belly fat and hirsutism problems for years, long before I tried Florinef. So I don't think that has anything to do with it. The other things I experienced while taking Florinef, losing muscle tissue and gaining weight quickly, they disappeared when I stopped taking Florinef.

    But yeah, I probably had the exogenous form while taking Florinef.
     
  13. ahmo

    ahmo Senior Member

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  14. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I'd be interested in knowing if you were developing Cushing's prior to taking Florinef. I hope you and your doctor can discover what's causing your symptoms. Endocrinologist have a much better handle on what's going on than primary docs and you will have a better chance of getting the right tests ordered than you would with a primary care doc.
     
  15. Ninan

    Ninan Senior Member

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    Thanks, @ahmo Good to know where to start!
     
  16. Ninan

    Ninan Senior Member

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    The doctor who checked my testosterone and cortisol levels were an endocrinologist. According to her they were normal and I already had hirsutism then. It's about four years ago. I'm going to see if I can see her again. I have huge problems leaving the house/bed though, so every doctor's appointment costs me weeks.
     
  17. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    If based on your physical exam four years ago she decided there was a chance you might have Cushing's, then she should have run some screening tests for Cushing's.

    Did you do a 24hr urine collection for cortisol and/or a midnight salivary cortisol? The high cortisol that is seen in Cushing's is produced in spikes. Sometimes the 24hr urine cortisol and/or midnight salivary cortisol have to be done multiple times and can take months to nail down. A random blood cortisol level is useless as a screening tool for Cushing's since the spike can easily be missed, unless the blood can be drawn every four hours (it happens).

    Another screening test for Cushing's is a dexamethasone suppression test. It's a bit more involved than the urine and saliva tests, so it's not the first choice. Sometimes all three of these screening tests (24hr urine, midnight cortisol and dexamethasone suppression test) need to be run multiple times.

    For people who live a long way from a major hospital, one way they can be properly screened without multiple visits is to go to Camp Cushie. It doesn't sound like this would be a good option for you unless you live in Seattle. I know how it is to be homebound and the toll it takes to go to the doctor. I see that your activity level is 1 - 2 and I'm very sorry to hear that. I'm at 3 and I honestly don't know how I would manage at that level.

    The testing shows you how complicated it gets:
    http://www.cushings-help.com/swedish.htm
    For the last test, item e, they sample blood every 4 hours in order to catch a cortisol spike. They place a picc line in a vein, so you only get poked once and then they access the line with a syringe. This would only be done in a facility like Camp Cushie, not your average clinic or lab. That shows you how unreliable taking one random blood sample is, if they've got to check it every 4 hours. They do all these tests so the patients can hopefully get a diagnosis before they go home.
     
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  18. Ninan

    Ninan Senior Member

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    Haha. Thanks. I have trouble walking to the kitchen. Seattle seems a bit far. :p

    I don't remember for sure but I think she just did blood tests. Easiest, cheapest, I guess. Could I really have Cushings even if I don't gain weight? I'm on a 1200 kcal/day diet and I lose 1-0,5 kilos/week.
     
  19. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Gaining weight is the typical pattern. I don't know that side of it well enough to say yes or no to your question. My expertise is in the laboratory part of it, as I was a medical technologist when I was working and I also just recently had a workup for Cushing's. My best knowledge is in the laboratory part of diagnosing it, and not so much in the physical exam department.

    I understand about making it out to the kitchen....and not making it out to the kitchen! I don't think I'll ever get on a plane or bus again to travel - it would be pure torture.
     
  20. Ninan

    Ninan Senior Member

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    I'm extremely sensitive when it comes to light and noise, so yes, it's torture.

    Thanks for the info!
     
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