Home Forums DISCUSSION FORUMS GENERAL HEALTH 23 year old male – HELP!

  • This topic is empty.
Viewing 15 posts - 1 through 15 (of 21 total)
  • Author
    Posts
  • #1624
    saltimbanc0
    Member

    I have been reading this board (and Dr Chyrsler’s forum) for some time and would now like to ask the advice of those here who are clearly very knowledgable.

    I WAS an elite level athlete, competing for GB initially and then for Australia and should have been at the Winter Olympics last year. Right now i cannot even work and am a total wreck – this from once being able to train 5 hours a day 6 days a week plus working and studying a degree.

    THE BACKGROUND:

    I have Crohns disease for which i was on Pred (doses up to 30mg) more or less consistanltly for 4 years (age 14-18). I was taken off this with no suitable taper – no suprises here for the next bit.

    Within about 6 months fatigue, depression, slow healing, poor sleep, increased appetite, weight gain, dizzyness/confusion/brain fog.

    No help from UK doctors and it was about 12 months before i stumbled across adrenal issues online and demanded to be tested for Addisons.

    The dynamic testing showed this (though nobody told me even if it was primary or secondary – im sure now secondary)

    As soon as i started HC (20,10,10) it was like a light switch going on and i went from being in bed to being able to train again and winning nationals.

    After about 3 more months things started to decline again, similar symptoms not helped by the HC.

    I have seen so many endocrinologists icluding the “top specialists” who failed to do anything but take my money. Again it took me being hospitalised from addisonian crisis several times before they ran any tests i felt were needed (suspecting pituitary issues).

    Right now insomnia is awful – i never sleep more than a few hours and its very broken, not more than an hour at a time and wake up unrefreshed.

    During the day my appetite is normal (i have always been strict with diet and things) but at night i have severe hypoglycemic episodes and cannot snap out of it with anything other than carbs. I have tried taking extra HC which sometimes helps a little but not uch and not all the time.

    Joint pain, slow healing (VERY SLOW), exercise intolerance – anything during the day exacerbates night time symptoms, weight gain (abdomen mainly), brain fog, low b.p, depression.

    I have left the endo as i ran out of money and my health insurance wouldnt cover anything, he refused to test GH levels but all my other pituitary tests showed deminished output – acth, lsh, prolactin, etc ALL LOW.

    He even ignored a DHEA level that was unreadabe it as so low – i tried replacing this with a supplement from online but with other problems i dont know how much it helped.

    I am sure i am low on testosterone, GH and probably others but dont know where to begin. In the UK it is impossible to find anyone who is empathetic or can even comprehend that a guy who is 23 and just a few years ago was an olympic hopeful and who’s life was his sport is now quite frankly suicidal because he is mostly stuck in bed, gaining weight, unable to exercise and depressed.

    I was actually kicked out of my GP surgery because they didnt want to deal with me and were of the view if i could walk through the door (more recently i wasnt even able to do that) then they had no reason to listen or help, at other appointments they had just told me to leave because my time was up before id even explained the issues.

    It seems people on this board have a wealth of knowledge and personal experience and i was just wondering if there was any advice where to start. If anyone bites il gladly fish out any lab results i have been able to keep.

    Thanks in advance for any ideas.

    S

    Current meds:
    HC 20,10,10 (normal dose – currently increased due to infection)
    Thyroxine 100mcg
    Azathioprine 100mg
    Humira (anti-tnf) 40mg (every 2 weeks)
    Effexor 150mg – want to drop this i think

    Current theories:

    Was mentioned that high norepinephirne levels might be the cause of my temperature issues (my temp is always low even when i have a fever il be sweating and be about 36.5 MAX and everyone will think i look like im about to burst into flame) Someone suggested i might hypothyroid still (sure am not able to lose any weight and have low energy) but that my body is compensating with high norepinephrine. This would fit as the problems sleeping and massive hypoglycemic attacks at night. I also noticed when my cortisol drops too low i get a fever and sweat, prob not from the low cortisol as such but the imbalance between that and the no-epi?-

    -> Should i drop the effexor and maybe just use an SSRI again (ideally none would be
    good the depression is bad when cortisol is low for me).

    Estrogen dominance (due to low testosterone and other imbalances)

    Ongoing is the Crohns whih will flair if my body has ongoing stress it cant manage (and heres irony – the humira and azathioprine along with imbalanced cortisol mean i catch every bug and cant fight it off which puts my body into stress, then the crohns flairs and i cant do ANYTHING and end up in Adrenal crisis as my oral HC isnt absorbed).

    #4595
    saltimbanc0
    Member

    :confused::confused::confused:

    #4590
    DrMariano2
    Participant

    Crohn’s disease is a chronic illness with episodic flair ups, involving excessive inflammatory immune system signaling. Excessive tumor necrosis factor signaling is one such problem.

    The excessive inflammatory signaling affects not only the intestines but the entire body. For example, it can cause depression and other mental illnesses. It can stimulate sympathetic nervous system activity, causing insomnia, stress, anxiety, etc. It can cause adrenal dysregulation – resulting in impaired production of adrenal cortex hormones in response to stress. It can cause arthritis and other inflammatory illnesses. It can change numerous functions in the nervous system and endocrine system.

    Treatment choice is a problem. If possible, I would prefer avoiding treatment which globally impairs metabolism and would choose more targeted treatments.

    Azathioprine, for example, is particularly toxic. It’s primary mechanism of action is to prevent DNA and RNA synthesis. This reduces white blood cell production and thus suppresses immune system signaling. But it also causes problems in the rest of the body’s cells. Since RNA synthesis is impaired – protein synthesis, the production of other signals, response to other hormones, neurotransmitters, etc. etc. are impaired. This in turn can cause other physical health problems, endocrine problems, mood problems, etc. with cancer as the ultimate outcome. Yes, if possible, I would avoid its use.

    Medications that specifically target inflammatory signals are going to be safer in that they are less likely to cause problems in other systems of the body. Thus, medications that target tumor necrosis factor signaling – such as Humira – are safer. Asacol (Mesalamine), which inhibits leukotriene signaling is safer.

    Low dose Naltrexone is an alternative-medicine option in treating Croh’s Disease – in helping reduce inflammatory signaling. This is a particularly safe treatment. http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&list_uids=17222320

    Nutrition usually needs to be optimize to help reduce inflammation. For example, omega-3 fatty acids may need to be added, foods with gluten may need to be avoided, fat soluble vitamin intake may need to be improved, etc. etc. Alternatives to simple carbohydrate intake need to be considered since simple sugars can increase inflammatory signaling.

    Effexor is an effective antidepressant. It works by increasing both serotonin and norepinephrine signaling. This is a problem, however, when with patients who already have excessive norepinephrine signaling since raising norepinephrine signaling further can also worsen their problems or later cause a crash. Excessive norepinephrine signaling, for example, can lead to anxiety, insomnia, and eventually increased inflammation. The combined increase in serotonin and norepinephrine may be useful in the short-term, but I worry about how stable the patient’s condition can be if I am exacerbating one of their signaling problems in the process. It is a double-edged sword. Some patients may need this treatment, but I have to be ready to adjust other signals to compensate.

    This is a reason I prefer medications that have a single mechanism of action. I can more easily control the signaling process and reduce complications. For example, if I wanted to increase norepinephrine while increasing serotonin, I can simply add a stimulant to the treatment and can control dose – rather than have a one-size fits all treatment as with the combination medications.

    A problem in medicine is that many physicians, once they are aware that a person has a mental illness, will tend to blame every physical problem that a person has on the mental illness.

    “It’s all in your head” they may think. Thus, they will end up missing the presence of an actual physical illness.

    For example, when patients come to the emergency room with a panic attack complaining of chest pain, the physician may not realize that up to a quarter of these patients actually are having a heart attack and instead would blame the chest pain on the panic attack, missing the heart attack in the process.

    One of my patients had congestive heart failure, but his physician thought it was all in his head. Another had a pus filling half of her lungs but the internist also thought it was all in the patient’s head.

    A group of psychiatrists and internists even missed severe hypothyroidism in a patient with delirium who they thought had psychosis instead. Delirium usually indicates the presence of a physical problem but if mistaken for psychosis, the physical problem can be overlooked. I was called to examine the patient when she had a prolonged stay in the hospital and was non-responsive to psychiatric treatment. It was easy to see what was missed.

    Perhaps it is human nature. But knowing or thinking that a person has a mental illness can seriously impair a physician’s thinking, blinding them to what may be physically occurring, unless they realize this and have the skills to take appropriate measures to avoid this blindspot. This is a very common occurrence – even with some psychiatrists.

    It is so common that many of my patients, once they realize this is occurring, learn to avoid discussion of their mental illness with their primary care provider or other physician so that they can get a more accurate assessment of their physical health problems. They focus on discussing the physical manifestation of their illness – e.g. fatigue, pain, weakness, etc., avoiding words such as anxiety, depression, stress, etc. They would approach the physician in as calm a manner as they can, avoiding being demanding or tension or other signs of stress, that can get them labeled as “mental”.

    When I speak to internists, etc., I often help their thought process by avoiding the psychological issues, and focus on the physical manifestations of the problem. It is interesting to see how much faster and more accurately they hone into the problem when mental problems are avoided on initial discussion.

    Given the large overlap in functions, it can be difficult to assess for deficiencies in many hormones, much less determine treatment dosing, without adequate lab testing. Thus, one can’t assume one has a testosterone deficiency or growth hormone deficiency when one hasn’t done lab testing.

    Thyroid hormone deficiency or inadequate thyroid signaling, is one of the exceptions in that it can be observed on physical exam. However, at which level of signaling does the problem exist is more difficult to determine. For example, is thyroid signaling impaired by impaired production of thyroid hormone, by impaired transport into cells, by impaired cofactors such as vitamin A and iron and the b-vitamins, etc. etc. Lab testing helps clarify the issues. Otherwise, adding thyroid hormone would still be a clinical trial or trial and error treatment.

    When a person has multiple health problems, a systemic assessment needs to be done to help determine how everything is interacting to cause the various problems and to determine treatment – which will generally be complicated. As such, ideally, it is important to assess nervous system, endocrine system, immune system, and metabolic/nutritional function.

    Hydrocortisone alone is an incomplete treatment, which also can cause deficiencies in the other adrenal hormones when given alone. Many people can tolerate these problems (e.g. reductions in progesterone, DHEA, estrogen, testosterone, pregnenolone, etc.). But many cannot and need replacement of one or more of these other hormones to have a more complete and adverse-effect free treatment. The minimum would be to pair hydrocortisone with an androgen (such as DHEA), if tolerated – which in some women and men is not.

    #4596
    saltimbanc0
    Member

    Thankyou for your reply and insight. Particularly validating is your voice on the depression issue relative to chronic conditions and other health concerns.

    I take azathioprine 100mg, mesalazine and am on HUMIRA (anti tnf – 40mg every 2 weeks) – however i have not been able to take this recently as Drs have failed to treat an ongoing chest infection (3 courses of antibiotics and no resolution – viral?)

    As a result i have gone from feeling like iw as getting out of my hole a month ago and returning to the gym for a few hours a day to now being back in bed in pain, unable to concentrate (brain fog) and utterly unable to sleep due to waking with hypoglycemia/panic attacks which are not alleviated by extra cortisol or simple glucose. It ends in me consuming huge amounts of carbs which has led to me gaining the weight i hadd started to lose from inactivity and being out of training. This is what has made me sure it is more than just a cortisol problem but more related to serotoning and norepinephrine etc.

    #4597
    saltimbanc0
    Member

    I have a sheet of my latest blodork and can upload this if it would be useful.

    With the stomach issues at the moment is it worth aiming to supplement with transdermal products where possible? im not sure about their efficiacy but have been recommended to use pregnenolone cream to provide hormone precursors.

    #4598
    saltimbanc0
    Member

    Getting some more bloods done this week and will see how that goes.

    Have managed to get a little sleep after dropping the SNRI but then i feel very flat and unable to concentrate during the day. As you mentioned above is it better to add a stimulant rather than a reuptake inibitor to combat this?

    Would love to get back out of bed and have energy and clarity to work out during the day.

    The probable issues that i will work on attacking are:

    The underlying infection in the chest (getting cultures today)
    E2 dominance (confirm first if its High E2 or just low T – either SERMS or progesterone cream)
    Neurotransmitter imbalances: Need to RAISE serotonin at night and RAISE NE during the day. Dopamine throughout could do with being higher.
    RT3 Syndrome – starting Wilsons protocol to address chronic low temp and hypothyroidism.

    Also will start transdermal pregnenolone when it arrives.

    Does this seem like a good plan and is there anything else/different youd suggest?

    #4599
    saltimbanc0
    Member

    anyone? :confused:

    #4594
    marsaday1971
    Member

    What are your thyroid labs like ? have you any figures. i am in the uk also and have just been tested for RT3 for the first time in 2 1/2 yrs since thyroid diagnosis. i became ill at 21 and was very fit. i struggled for 16 yrs until i found out about the thyroid. stopped the anti depressant and have self treated for the last 2 1/2 yrs. now the NHS is helping me.

    if you are still tired are you still exercising a lot? if so you need to stop because your body cannot handle it.

    i am doing very well now, but still have absorption problems of the T3. i have been blood tested for lead because i have also found out i have very high hair lead levels. still waiting for results. this maybe why i am having absorption problems. i take 25mg hc and am on 125 T4 and 37.5 T3. The T3 has made a big difference.

    you should try real thyroid help for info and in the UK, thyroid patients advocacy, run by sheila. This is a very good group in the UK and they have meeting in different cities.

    Crohns complicates things i am sure.

    #4600
    saltimbanc0
    Member

    My thyroid at the moment is: Almost no tsh, t4 low/med range, i dont have any valid t3 results to go with that but my temperature is always low.

    I have started trying Wilsons protocol but nt sure i have the best T3 to dose with for that. Hopefully il get hold of it and be able to lear out any rt3. I havent felt noticeably worse but then the last month i have been bed ridden anyway. I guess the goal will be to get my temperature to the normal range and then test to see what is haapening numbers wise.

    I have taken myself off the anti-depressants and that has already helped with sleep but i am constantly hungry and its hard to keep my mood up. Hopefully this will improve with time, i supplement 5htp and when needed l-dopa.

    #4601
    saltimbanc0
    Member

    @DrMariano 3271 wrote:

    This is a reason I prefer medications that have a single mechanism of action. I can more easily control the signaling process and reduce complications. For example, if I wanted to increase norepinephrine while increasing serotonin, I can simply add a stimulant to the treatment and can control dose – rather than have a one-size fits all treatment as with the combination medications.

    Thyroid hormone deficiency or inadequate thyroid signaling, is one of the exceptions in that it can be observed on physical exam. However, at which level of signaling does the problem exist is more difficult to determine. For example, is thyroid signaling impaired by impaired production of thyroid hormone, by impaired transport into cells, by impaired cofactors such as vitamin A and iron and the b-vitamins, etc. etc. Lab testing helps clarify the issues. Otherwise, adding thyroid hormone would still be a clinical trial or trial and error treatment.

    Hydrocortisone alone is an incomplete treatment, which also can cause deficiencies in the other adrenal hormones when given alone. Many people can tolerate these problems (e.g. reductions in progesterone, DHEA, estrogen, testosterone, pregnenolone, etc.). But many cannot and need replacement of one or more of these other hormones to have a more complete and adverse-effect free treatment. The minimum would be to pair hydrocortisone with an androgen (such as DHEA), if tolerated – which in some women and men is not.

    Are you saying you would use an SSRI and then IF necessary add a stimulant during the day? Would a similar benefit be possible with 5htp for the serotonin and if not what SSRI do you recommend with weight gain being a worry?

    I intend to retry LDN when i am able to sleep again and a seeking supplementation of pregnenolone but it seems there are very few products that are absorbed and bio-available.

    My testosterone has tested low before and DHEA was non existant but since adding it i have had so many other problems countering i all that i have no idea if it helped.

    #4602
    saltimbanc0
    Member

    Having dropped the SNRI completely a week ago (its been a hellish week) I am now sleeping better but very up an down emotionally in the day, am taking 5htp throughout the day and Ldopa in the morning to try and boost the flagging neurotransmitters – seems to be working. Just the fact i am getting a few hours or more sleep is HUGE! Also the sweating has pretty much gone (some clever sausage said this was prob due to high NE and this would confirm that).

    I finally got a confirmation of the infection and have targetted antibiotics (yep another one!) an am on aciclovir to clear any reactivation of shingles. Am debating whether to counter with something for candida/yeast after the antibiotics with having had so many but otherwise will just stick to high dose probiotics. Finally getting on top of the infection and getting the sleep to improve are pretty huge steps forward but now i have a HUGE climb ahead…

    Have stacked the weight on from being stuck in bed with crashing blood sugars etc and am desperate to shed this quick, knowing the sex hormones and thyroid numbers will give me a clue if anything is holding me back with that as i sure dont have any pep or drive at the moment and seeing a fat bloated wreck in the mirror doesnt help.

    Have followed recommendation on other sups- digestive aids etc. Only thing outstanding is the ******* pregenenolone (typical post delays). I will prob get an idea from the bloods if lots of hormones are low just how important the preg is but i cant get to any labs that will test pregnenolone at the moment.

    #4603
    saltimbanc0
    Member

    Last night was hopeless again, by 7pm i was wasted but couldnt switch off. By 10pm the joint pain, carb craving and other problems came back and i also had a toothache (often inicator of low cortisol in me). I also had a hell of a lot of cramp last night in mall my muscles and kept taking on extra fluids and salts, it as still there this morning but again ive had another night of no/poor sleep and a lot of eating and have gotten up feeling naff and unrested.

    The t3 dosing sounds very frequent, i am suprised its that often but i guess i can just do 3/4 doses at the same time as my cortisol seeng as i dont/cant forget that (i know about it within 30 mins if im late).

    Hoping the T3/temp/metabolism/weight loss does work but i know for sure if i had energy to be up and about and was able to sleep i could drop it (when i was training food was just fuel and i could manipulate my weight no problem through diet and exercise to be in the shape i needed to be for competition – that was about 30kg ago now though).

    Would it be likely that low test and high e2 could also make a big difference to this?

    Results from Friday:

    FBC – fine:
    WBC – 9.65
    RBC – 4.96
    HB – 149
    MCV – 95.6
    MCH – 30.1
    Platelets – 356
    Neutrophils: 5
    Lympocytes – 3.4
    Monocytes -0.9
    Eosinophil – 0.1
    Basophil – 0

    Just not sure how this reflects ongoing infection in light of the immunosupressants etc…

    ESR – 11 (>10)
    b12 – 489 (been taking sublingual b vits)
    Sefum folate – 8.5

    Na – 141
    K – 4
    Creatinine – 97
    Urea – 6.4
    GFR – >60 (range starts at 60?)

    ALT – 44 – high
    Alk Phos – 134 – high

    FSH -6
    LH -3.7

    TSH – 0.03
    Free T4 – 11.7

    9am cortisol – 69 (range starts something like 260-800)- HOLY ****! I am suprised i managed to walk in and out before taking my meds and i know i literally swallowed them as i walked out of the clinic as i knew i was low.

    So its on to the private bloods to see what IS the problem:

    Testostorone, Estrogen, Progesterone, DHEAS, Pregenolone (if they test it here) Free T3, RT3 (if they test it here).

    ANy others? :confused:

    Kind of trying to keep my head up by telling myself it IS possible to get things balanced and find a day i can bounce out of bed having slept, workout and work as usual and get my physique and life back even if im not still going to the olympics. The idea of climbing out of this hole yet again is tough when its been a 3 year history of fighting my hardest only to slip back worse than before. 🙁

    #4591
    misseschris
    Member

    Have you had vitamin D levels checked? Deficiency can cause depression. Also, sufficient levels help to control blood sugar I’m thinking with you being in GB and bedridden you have not gotten much in the way of sunshine? What about your ferritin levels? B12? magnesium? Definitely hormone deficiencies will contribute to your problems- but nutritional deficiencies also need to be addressed. Also, Crohns disease certainly makes it hard to absorb your nutrients and probably has a huge impact on your absorption of hc- you are probably only getting a fraction of what you are taking. Have you ever tried a gluten free diet? Just some thoughts…

    #4604
    saltimbanc0
    Member

    Thanks for the post and ideas,
    I take a high dose vit D supplement now (for the last 2 months or so) or exactly those reasons. I also check all my salt intakes because of the addisons and need to keep blood pressure stable.
    B12 i can only keep up by either sublingual drops or injections, i know you cant overdose as its water soluble so generally take this enough to keep levels in range.
    The problem with the diet, even things for the Crohns, at the moment is these night time problems that were only alleviated by the carb consumption (having qualifications in psyh and nutrition it was tough feeling it was a mental thing and also knowing what i should be puttting in me realistically but this was the only way i was managing to avoid adrenal crisis).
    If things stabalise enough for me to sleep through the night without problems im sure gluten free will be easy enough to try – i have been able to cut any food group before or even do liquid fasts when it was just the crohns and addisons (taing hc) that were the problem. now with all this other stuff, well i can be fine in the day but im a different beast at night.
    Hoping to learn from the bloods im doing this week if there are any BIG imbalances ith hormones. From there i can track back and look at dietary influences that could alleviate this.

    #4592
    misseschris
    Member

    The dietary issues can definitely CAUSE increased hormonal difficulties. Gluten intolerance and celiac actually can cause thyroid problems and adrenal issues- fixing these things can alleviate some of these problems without having to take the supplemental hormone. Dr Mariano talks about adequate iron to help the adrenals as well.

    I was wondering about you consulting with Dr. Peatfield? He is in the UK and does email consultations. His email address is DrBarryPeatfield@AOL.com. He is very nice and knows a lot about thyroid and adrenals etc. Maybe you could see him as well.

    Funny (not really) but my low cortisol issues have always been worse at night and I have to take isocort during the night to sleep well-

    Good luck to you! I have been following your post on the Addison’s site.

Viewing 15 posts - 1 through 15 (of 21 total)
  • You must be logged in to reply to this topic.
Scroll to Top