I've been trying to get a diagnosis of, well, anything for 8 years now. I've been severely ill and housebound by whatever is going on with me, and whilst I'm convinced it's a hormonal problem of some sort (adrenal or thyroid) I can't provide any blood tests that will lead to treatment. All the levels I need to get anyone interested come back "normal". TSH, FT3, FT4, TPO etc. are all sat happily within the ranges.
However, from the beginning I've had a fairly constant thinning of hair on my head that started with becoming ill. But recently I've noticed that my hair is now thinning everywhere. Literally all over my body. I've got very little underarm hair left, the hair on legs is sparse, even my pubic hair is severely thinning. With the research I've done on the internet, apart from alopecia (which it doesn't sound like), I can't find anything other than thyroid/adrenal/pituitary as a cause.
I was just wondering if one of those 3 I mentioned is by far and a way the most likely cause, and this should serve as a fairly definitive marker for what is wrong with me, or are there other illnesses that could be causing this all over hair loss? And is it common with thyroid/adrenal problems?
Thanks!
- Andy
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omron
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Hair loss is common with thyroid problems and thyroid/adrenal/pituitary are all kind of inter connected. If you can get a copy of blood tests and post them up this will help as we have all learnt never to accept 'normal' from doctors when it comes to blood results. Hopefully someone will come along with better info for you.
Omron, can you post your thyroid results and ranges (the figures in brackets after results). Normal is a broad range, where in range the results are will give us a clue as to whether your thyroid is a problem. Head and body hair loss is common in hypothyroidism.
Omron, thyroid results are unequivocally euthyroid (normal). Antibodies negative for autoimmune thyroid disease (Hashimoto's). TSH is low-normal, FT4 in the top third of range and FT3 is excellent.
So based on those blood tests you think we can rule out thyroid completely? If I said that my sister has recently been diagnosed with hyperthyroid, thyroid nodules and a goitre, and my dad has nodules and a goitre too would that make any difference (I've read about thyroid being genetic/familial in some cases)
If not thyroid then, what else could it be that is causing all this hair loss? Low cortisol? Weirdly my cortisol is high every time I have it tested in the blood. And when I say high, I mean it's almost double the top of the normal range. I'm just lost as to what could be causing my entire body to lose all it's hair.
Omron, ferritin 12 - 290 is normal in my range. Hairloss is common in ferritin <70, halfway through range is optimal.
There can be a genetic link to thyroid dysfunction but it isn't a given and doesn't always follow the same pattern. My mother and sister had Graves and my hyper symptoms suggested I had too, but it was Hashimoto's causing my symptoms.
Goitre can develop due to autoimmune Graves or Hashimoto's; hyperthyroidism causing the thyroid to swell; high TSH flogging the thyroid to produce more hormone in hypothyroid patients; and idiopathic, ie no obvious cause.
Nodules are common, most people will have developed one or two by age 60 and it's rare to die in old age without nodules. Toxic hot nodules will cause hyperthyroidism but otherwise nodules don't affect bloods.
I don't know the symptoms of high or low cortisol. Google "high cortisol + hairloss" or "high cortisol symptoms".
My ferritin has been 231 and 275, so well above 70. But both times at the top end of the range. If halfway through the range is optimal, could it being on the higher end indicate anything?
Yeah, the nodule in my dad is likely to be old age. However, my sister is only 31, and her nodule is already very large. In fact surgeons are already talking about removing her thyroid! And she has a low TSH too. It just seemed like a real coincidence that I would come down with a mystery illness, have all the signs of thyroid problems (hair loss, low temp, low blood pressure, very low weight, digestive issues, palpitations, nervousness, weakness etc.) and my sister also have similar problems but them be totally unrelated.
Omron, ferritin is a storehouse/dump for iron. The body draws on the store when more iron is required and dumps excess iron to requirements into ferritin so levels fluctuate throughout the day and night. Ferritin can be high if you had a cold, virus or illness causing infection or inflammation at the time of testing. Iron is withdrawn and dumped into ferritin to starve bacteria and virus which feed on it. I've not heard that high ferritin causes hair loss.
Have you tried a gluten-free diet to improve digestive issues? If you are gluten intolerant or sensitive it can cause widespread unwellness. Check out articles on gut health and leaky-gut.
It may be worth checking vitamin D, B12 and folate to rule out deficiencies too.
Ahh, that's interesting. For the first 5 years of being ill I had some very strange fluctuating patterns with my blood tests. Every winter, without a fail, I would get increased ESR, CRP, White Cell Count (Neutrophils specifically) and Platelets and my serum Iron and Hemoglobin would drop. However, my ferritin was at the top end of the range (as I posted). I'm guessing that may then have been the iron being dumped into ferritin? But then in the summer everything would return to normal. ESR, CRP, Neutrophils, Iron etc. would all become completely normal again.
So in the winter I was getting much more inflamed for some reason. But only the winter. I have no idea what would be causing that though..
I haven't tried a gluten free diet yet. It's something I've considered but always been following up other ideas or tests. I'll endeavour to give it a go.
My B12 and Folate are fine, but Vitamin D is low. I doubt it could cause all my problems, but could it be the reason for all the hair loss?
Can be low zinc. Check dietary sources for zinc and get tested. Don't take supplement for zinc because it needs to be in balance with copper. Oysters and clams are great sources.
Those thyroid test results are not just good. They are stellar. Can we trade?
Chronic high cortisol can result in hair loss. And muscle loss. And bone loss. Did you have the salivary testing done? It's possible your cortisol is high in the morning but not high for the rest of the day. It can increase blood sugar levels as well. Check diet and exercise. But your thyroid......hm, I'm jealous.
I would happily trade if I could figure out what was wrong with me!
The cortisol problem is a weird one. Every single blood test I've had done has shown it high. The last a few months ago was 975 nmol/L, and the range is 171 - 536. So almost double the highest acceptable figure. BUT, when I've done the saliva test for cortisol its come back low.. for all 4 points. And then I've done the urine test a few times, which has come back normal but at the bottom end of the range. So I'm lost when it comes to cortisol. I feel like it has to be involved somehow but I can't get a grip on it.
Hi Andy, those are excellent test results for thyroid. I think you should examine the adrenal connection. Your adrenal glands do so much work for your body contributing to sex hormones and the various steroids which are so important. They use cholesterol to do this. You high cortisol level might suggest you are in a constant fight or flight mode and you are running on adrenaline. These three articles might help you sort some of this out.
Thanks for all those articles, I've had a skim through but I'll give them a proper read soon.
What you say about running on adrenaline sounds more like me. I'm constantly very fatigued and weak, and yet I talk really fast and move too fast. My reflexes are ultra reactive, my heart is constantly beating too strongly, I'm nervous and on edge all the time, my mind races, food goes through me too quickly, I can't put on weight (I'm 5ft 10" man and weigh 8 and a half stone / 120lbs).. I just feel like my body is being totally overstimulated! So I've always had it in my mind that adrenaline is playing a part in that.
But, as I said in a reply above - the cortisol problem is a weird one. Every single blood test I've had done has shown it high. The last a few months ago was 975 nmol/L, and the range is 171 - 536. So almost double the highest acceptable figure. BUT, when I've done the saliva test for cortisol its come back low.. for all 4 points. And then I've done the urine test a few times, which has come back normal but at the bottom end of the range. So I'm lost when it comes to cortisol. I feel like it has to be involved somehow but I can't get a grip on it.
I also once tried some adrenal supplements after being told I had adrenal fatigue by someone, based on the saliva readings. They made me much worse! I couldn't sleep, my racing thoughts got much worse, and I generally felt, just, "wrong" on them. They did raise my temperature a bit but I didn't get on well with them at all. I think they were called "Nutri Adrenal".
Andy, it's really sad that the system hasn't moved past just handing out pills.....not just for thyroid conditions and that shuts down any investigation of the disease. But functional medicine doctors try to find causes. These two videos by this type of doctor give an example but I don't know where they exist. Two possibilities here but he has 22 others.
My brother has lost all his body hair, and he was extremely hairy, poor soul, at least in the areas that everyone can see, and I heard him mentioning to someone that his testosterone is very low. You mentioned that yours is fine, but did you have it checked recently? My brother is diabetic but I don't think that this has anything to do with it.
I haven't had it checked recently, but when I did I was losing my hair at that time too. So I just assumed it couldn't be the cause. The last time I had it checked it had actually increased a bit, and was pretty much in the middle of the normal range.
Also, and this is very odd, but one symptom I have that goes against almost every other chronic illness is an increased libido/sex drive. From what I've read, low testosterone causes the opposite of this and would reduce your sex drive. So that doesn't fit really either.
But I'll aim to get it checked again, to be on the safe side.
I was going to mention the low libido, but if yours is even better than good, then you shouldn't worry too much about the hair loss.
I just thought that maybe certain health problems are due to your diet. Do you use your microwave a lot?
Maybe you should see a private endo to see what they make of this. I believe if you email somebody on this website they can send you a list of helpful doctors. I saw a Dr Boardman in the midlands who was helpful but there are others around. The saliva test is supposed to be more accurate that the blood test for cortisal as a blood test makes you cortisal rise. It seems like your cortisal might be low but then overreacting to stimulus like a blood test. It also might be helpful for you to do some mindfulness meditation. I believe this can have a biological effect and might calm down some of your racing.
I'm actually going back to see an endo in a couple of months. The problem is that I've already seen 3! But because most of my blood tests are normal (and in the case of thyroid, perfect, apparently!) then I don't really get anywhere. However, the first endo I saw actually admitted me to hospital because he thought I had adrenal insufficiency/addison's. Unfortunately when the cortisol came back high that scuppered that. Then I passed the Synacthen stimulation test which didn't help my case.
Then the next endo I saw said I had every symptom of adrenal insufficiency/addison's, but again because of the blood test couldn't do anything. So I'm hoping this time I can convince them of.. something!
Do you know who it is I could email for a list of helpful endo's?
Also, I agree, I think my cortisol is low most of the time and then overreacts to any little stimulation. After any sort of stress that causes it to rise I get much worse a few days later.
I'll look into trying some meditation too, thanks.
The strong heartbeat makes me think you have low T3. I'm no doctor, just listened to a lot of symptoms and reading many articles. I wonder if you tried a tiny amount of T3 it would reduce symptoms. You definitely seem hypo.
I'll be honest, many people here have just gone the self medication route since you can now get your own supply of NDT and/or T3. They aren't expensive when you order online. After 20 years, I don't feel I can do any worse than all the doctors I have seen. The only thing is that if T3 receptors are blocked, I don't know what will happen with straight T3. I've read that it may help but as I said, it would be experimental and definitely not good to overdose on T3. It is usually sold to body builders and athletes.
If you have time, I also like this man's presentation as it coincides with all the alternative blogs I've read and he highlights Dr. Peat as the true authority on thyroid.
Interesting. If I were to list all of my symptoms might that give you a clearer idea if T3 was likely to help?
List:
Hair Loss - head, legs, pubic, underarm, chest.
Strongly Beating Heart - all the time, sitting, lying or standing.
Weakness - total muscle weakness. Can only stand for a few minutes, can't lift things etc.
Low Temp - always low. Waking on average is 35.9 C, peaks at about 36.4/5 C. Also it drops even further when I move/stand/do anything.
Low Blood Pressure - averages about 105 / 65. Can be lower.
Bloating/Wind/Gas - general poor digestion.
Frequent Opening of Bowels - often have to go to the loo.
Inability to Gain Weight - 5ft 10" man and I weigh 8 and a half stone.
Constantly Greasy Hair - gets very greasy within hours washing it.
Seborrehic Dermatitis - All over face.
Retaining Water - was very puffy from this, has improved a bit.
Racing Thoughts - Brain is always overstimulated. Often have earworms or "singing in the head".
Slump in the Afternoon - always feel much worse between 12pm - 5pm. Every single day without fail, like clockwork.
Sensitive Nervous System - Can't deal with any stress. Very quick to get nervous.
Increased Libido - sounds strange but I have a vastly increased sex drive. And not just a typical male type thing, it's definitely way too much and unusual.
Phew, that's all I can remember now. I've probably missed some off but it's a good starting point!
Andy, I am on straight T3 after years and years of being undermedicated with Synthroid and Armour but I'm not sure if my FT3 is high enough even now but I will say it improved my heart beat tremendously.
The neurotransmitters are still too busy. I take Gaba which helps. Tinnitus has never improved and like you, the music and even a men's choir one night, but all only in my right ear. The adrenals and thyroid work in tandom so it's hard to know exactly which since the blood tests don't really say.
I hope you will watch the last video by Dr. Bergman and take notes. Your whole system needs attention but I believe him when he feels the body can heal. If you can handle some of the suggestions I would certainly try. You will be surprised at what you learn. Do you take other drugs or supplements? Magnesium is used up quickly by the adrenals and vitamin C is excellent also. I would "overdose" on both for a while. Fish oil or some omega 3 will help balance saturated fats. Could you put some coconut oil in your morning tea or coffee. Very good for the brain. I have to start that again myself. Can you afford massages? It can help release some of the excess tension if it's not too painful for you.
I will definitely watch the last video. I'm cataloguing everything that's been suggested so I can make sure I do/read/watch it all.
I don't take any other supplements currently no, but there's a reason for that - I can't. I've tried taking Vit C, Magnesium, Vit D, B Complex.. you name it I've tried it. But my digestive system hates everything that isn't food. If I start taking any tablet or supplement it just destroys my digestion, gives me constipation and makes me even more miserable. Even switching to the liquid equivalents doesn't work. However, I could probably add some omega's and coconut oil and see how it reacts to those.
The biggest problem I have is that I can do, basically, nothing. I'm housebound because my body cannot deal with anything, in the sense that the nervous system overreacts to whatever I try. You suggested massages - they'd have to be able to come to me because if I try and go anywhere my body seems to view it as a stress and then I get this huge increase of cortisol/adrenaline. That's why my last cortisol blood test was so high. All I did was go on 5 minute drive to my GP's surgery, wait 2 minutes and then have a blood test. I wasn't mentally stressed, but my body just goes mad and overproduces these stress hormones. I need something that can relax my entire system so it doesn't overreact to everything. Then I might be able to start taking supplements, or doing a little exercise and just getting things back on track. But until my system calms down I'm stuck.
Oh my goodness, Andy. What a horrid situation. All right, wondering if you can calm yourself enough to do skilled relaxation. I do believe this is a possibility for you since you are so disabled at the moment. Dr. Herbert Benson wrote a book about this. Lie down with a spoon or something in your hand that will fall if you go to sleep. You do not want to go to sleep but you want to get into the brainwaves before delta (sleep). There are also CDs with binaural beats to help you achieve the alpha/beta state. But without those, concentrate on your breathing or tell yourself to relax starting with the toes. It doesn't matter what you use but have to quiet the mind. Your system will change in many ways while doing this if you have captured the right response. There are books and articles about this if you need clearer explanations.
Andy, I was in a rush earlier and am still thinking of all the stress your body encounters. You may have to figure out what foods may be involved. There are "safe" foods that you could look into but you must stay away from processed ones since the MSG and other additives will be chemical stress. I would also stay away from fragrances in creams, shampoos and just use ivory soap. Try baking soda to clean your scalp. If you shower, wet your head and rub baking soda into your scalp. After you finish washing, rinse off the baking soda.
I wonder if the additives in supplements cause the upset. Are the liquid ones pure? There are also whole food supplements if it is the isolates that bother you. Have you tried juicing?
I do so want you to get back on your feet, Andy, and I think you can do it without doctors; at least not the available ones. I know it takes discipline but I think it will be well worth it.
This is EXACTLY what i have been going through for the past 4 years! When my doctors wouldnt listen to me i begged one of my family members to back me up at the doctor's office and its like they went skitzo and they refused. Its even harder for me because im a male and everyone wants me to think that its alopecia and to stop going to the doctor (so much for family always being there for you). Ive had pain just going to get my hair cut it felt like the barber was ripping my hair out! Ive gone bouts where i have goven ul on seeing doctors because they just wont listen to me. Im planning what to do next but i have a stressful job so that has been hard to take the time to do this.
Omron: I can relate to you losing all your hair EVERYWHERE. I've told my doctor about this and because I'm an "old lady," she thinks it's just because I went through menopause. So, everything I have or try to explain to her, she looks at me the same way..that I'm just "old" and want meds. I'm 67 years old and I have friends who are older than me and friends that have MS, etc., and they have more energy and have their hair. I'm tired of fighting and being looked at like I'm a moron...
It's ludicrous. By the time I see the endo in 2 months I'll have virtually no underarm or pubic hair, and very little head or leg hair. I don't know how they're going to react.. it's not as if they can blame old age or menopause on mine (seeing as I'm a 28 year old man) but I'm almost 100% certain they will find a way of dismissing it. But no-one should be losing every hair on their body! It is not normal or natural - it is a definite sign that there is something seriously wrong going on inside.
And I'm tired of fighting too. I was a 20 year old at university with their whole future out in front of them, now I'm housebound, friendless, living off my parents and not able to look after myself. My entire life has been destroyed and no-one within the medical profession gives a damn or makes even slightest effort to help. All they do is try and belittle and undermine you.
I think most doctors are taught in medical school a mandatory course on how to be dismissive and condescending to their patients. This is a MUST, I believe. I've already run my race, but you...you have your whole life ahead of you..so keep fighting!
But why!? Why if you go into a profession that is all about helping people, do you then act in the complete opposite way? Why would you want your actions to cause more pain and suffering to those who you have devoted your career to aiding? What sort of person enjoys that? And I'm sat here self-indulgently ranting, but there are so many other people in the same situation. On this website, throughout country, across the world. What is it that makes the people drawn to the medical profession such uncaring monsters? I realise I'm generalising to an extent, but you don't have to look very hard to find many, many identical stories to yours and mine. It's thoroughly depressing, but also utterly baffling to me.
Ok, rant definitely over now!
But I will keep fighting, as tough as it is, an so should you!
Maybe they're all afraid of being sued or something, so they take the most "conservative" path that they can and to hell w/the patients. I have never really found one that would think "outside the box," and it's tough. I'm ranting, too...so sorry to all the other people on here!
Being sued is their main fear - I was told this when asking about the reluctance to prescribe B12 when the tests are proved to be unreliable. You cannot overdose B12 yet they are willing to let people die as a result of withholding treatment.
omron - so sad to read your posts, you've been given lots of good advice so do take your time to read and watch.
Many of us on here been failed by the medical profession, I'm highly critical having been repeatedly failed by a number of GPs and now an NHS Endo. I suspect that many of them can not cope with the fact that patients are more informed, have the internet to access medical information as well as sharing on forums therefore not so easily fobbed off. Add egos into the mix so there's really not much hope for us.
Learn as much as you can cos knowledge is power. I do hope that you will see improvements to your health and importantly be able to enjoy life.
Rant away on here and ask as many questions as you can. There's terrific support on the forum.
Omron, I've been ill with various things for many years. In the early days, I used to think there must be something wrong with me as a person, because otherwise why would my doctors behave as they did? I am rather more cynical these days and have come to see that the medical profession attracts precisely those people who should never work with people at all, let alone those who are uniquely vulnerable because they are ill. I think a fair proportion are power-hungry and have controlling instincts towards others. Some I think are actually sadistic, and some may also be psychopathic, having no conscience towards those in their care, and driven by a pathological degree of egotism.
From what I observed at A-level and far beyond, at a general level medicine attracts bumptious little squirts whose priority is social status, financial reward and personal advancement. Doctors are still highly respected members of society; one old school friend actually told me once that she had wanted to go into medicine because of the respect she would get from patients. That was her own prime motivation. As it happens, life has not been kind to her since, and a major rethink occurred when one of her children became ill and did not respond to conventional medicine. She's now a homeopath!
I do hope you find an explanation for your problems. My feeling is that you should reconsider low cortisol as a likely problem and, like others here, I would recommend a 24 hour saliva test from a private lab. You may also wish to have a look at the TPA forum (it's a separate standalone forum run by Thyroid Patient Advocacy) because they can advise on a 24 hour thyroid urine test. I have found that my thyroid blood panel and the results from the urine test bore no relation to one another. The urine test may reflect the clinical picture more accurately.
I think you're basically spot on. Financial, status and ego are their main motivations. Who cares about the patients, eh?
I also agree about low cortisol. In fact I've done 4 or 5 saliva tests and they've all come back with low results. Unfortunately though when I tried medicating with the adrenal supplements I became worse. I did read some people don't cope well with the adrenal glandulars, perhaps that's what happened with me. But it's difficult to know where I stand.
I think I did a urine thyroid test too at one point, and it came back slightly low. But that was a long time ago. I'll follow that up, thanks!
Not everyone can tolerate adrenal glandulars. If the product contains extract from the whole gland, you will get, in theory, the whole range of adrenal hormones, including adrenalin.
My cortisol is extremely low. I took 3 NAX daily for several years, but the cortisol continued to decline. I was advised a couple of months ago by Dr Peatfield, who is very experienced in this area, to add in hydrocortisone. Unfortunately, as the HC kicked in, the adrenalin in the NAX became too much for me. I've dropped down to 1 a day and continue with 20mg HC split into 4 timed doses of 7.5mg + 5 + 5 + 2.5. I'm also increasing my T3 to a supraphysiological dose. It's going to be a long haul after many years of illness, so I don't expect improvement very soon.
I do hope you find a way through with help from the forums. I may have missed this in one of the comments, but have you been thoroughly tested for Pernicious Anaemia - all relevant antibodies, not just bound serum B12?
I believe the glandulars I took did contain the entire gland, so that may have been why I had a bad reaction to it. This was under Dr. Peatfield too, and I know that many people have had success with him, but once I started reacting badly to it he didn't really know what to do and basically abandoned me. Unfortunately that whole experience really put me off self medicating, and so I'm pretty wary about trying anything now. It's also what made me doubt the saliva test a little, as it clearly showed low for every one of the 4 samples but the treatment proved to be completely wrong for me.
I don't think I've had any antibodies tested for Pernicious Anemia. My B12 was perfectly fine, but as far as I'm aware I didn't have anything extra tested. I don't know if Pernicious Anemia has any genetic link, but my Grandmother died from it before I was even born. So I'll look into the antibodies test.
I'm really sorry to hear about your experiences with adrenal treatment. I saw Dr P quite recently, and he seemed to have changed his protocol somewhat, mentioning that he saw increasing numbers of patients who did not respond to glandulars alone. My next option, if the HC doesn't put things right, is to try prednisone, or a similar drug. Please don't give up on this - if you don't try something on your own behalf, I'm afraid that you may find it difficult to locate a mainstream specialist who will help you. You can always post new questions or progress reports here on the forum and we will try to help you.
PA most certainly can be inherited. If your grandmother had it, you may do too. Of course it can occur 'de novo', but I'd urge you to get a/b tests and the 'active B12' test privately, unless you're in London and can get a referral to a specific hospital there. Head over to the PAS community here in the HU forums - there are some very knowledgeable people who can advise you. Look out especially for Marre, Gambit and Polaris.
I know you're right, and I understand I may struggle to find anyone willing to treat me. I'm due to see an endocrinologist in November. In fact I'm going back to where I started 7 years ago - Oxford. In fairness to them they did the most tests I've had since becoming ill, and were the one's who both thought I had Adrenal Insufficiency and told me I had all the symptoms of it. But of course when the Synacthen test was fine they ruled it out completely. So I'm not expecting much.
I just feel really nervous about taking anything myself without being under the supervision of someone qualified. Especially something like HC, a steroid which you can do serious damage with if you get it wrong (or so I've read, anyway). I'm so ill as it is I'm also worried about making myself any worse. But I also know that my chances of getting treatment from the NHS are slim to none. I feel totally stuck! So frustrating. And I don't even know that cortisol IS the issue. Argh!
I'll head over to the PAS community later this evening and post something. Hopefully I can get somewhere with that. Or at least rule it out.
Thanks again for all the help, I really appreciate it.
You're welcome, Omron. Please do read up on the use of cortisone for low adrenal function. The doses involved, typically 20mg daily, are physiologic, not pharmacologic: it's a vitally important difference. A physiologic dose is merely a replacement for what your body can no longer manufacture for its day-to-day requirements. Pharmacologic doses of HC are much larger, and often given for the most severe conditions, including life-threatening auto-immune ones like SLE, other severe inflammatory conditions, cancer etc.
I understand your trepidation about self-treatment - I once felt as you did. But at this stage of your ill-health, what do you have to lose by starting treatment gradually, cautiously, and taking careful notes of what you are doing and the way you are feeling? If your salivary cortisol keeps coming up as low, I would accept that as being correct, if you're using a reputable lab. Blood cortisol measurement is unreliable, though you won't get an endo to acknowledge that. Interesting to know that US health insurers now accept that salivary cortisol is the more accurate measurement. That isn't necessarily the case for all hormone measurement though.
I hope the people over on PAS can help. You may have to wait a little while for a response - it's not as well populated as the TUK forum.
Well...no doubt I'm barking up the wrong tree but having read your posts, I thought I'd have a go too!
First of all, you say you have POTS [postural orthostatic tachycardia syndrome] and you also describe these Adrenaline like surges.
As to your POTS – you already have this very debilitating condition but you don't say what advice and / or treatment you received / are receiving for this.
A lot of your ongoing symptoms still describe POTS. So perhaps your POTS is not being managed.
Also, there are also a few different types of POTS from the more common one – but see them at potsuk.org/types_of_pots - a few copied from:
Hyperadrenergic PoTS - can appear similar to pheochromocytoma (which is a norepinephrine [aka noradrenaline] producing tumour)
[You've been tested and results show that you don't have phaeochromocytoma].
When upright, individuals may experience a sense of anxiety, tremor, and cold sweaty hands and feet. Also, in a good portion of individuals, there is a significant urge to pass urine after even a short period of time upright. True migraine headaches are also common. Blood norepinephrine levels are often high. Blood pressure may also increase (not fall) on standing up.
Norepinephrine Transporter (NET) Deficiency and Blockers
This type of PoTS is similar to Hyperadrenergic PoTS. There may be an abnormality in a gene that leads to too much norepinephrine circulating in the body. [There are many antidepressant and antianxiety drugs (SNRIs) that work, in part, by blocking this transporter. These can increase heart rate and make symptoms worse in some patients].
When you described the monthly / seasonal pattern to your illness, I first thought that Testosterone [and DHT] *** were somehow involved – but it could possibly be influencing your POTS.
Testosterone follows daily, seasonal, and annual rhythms. For example, testosterone levels are highest in the morning. By late morning, they level off and begin to decline.
Men also secrete their highest levels of testosterone in October, levels continue to rise throughout November December, January and February, and their lowest levels in April. Testosterone levels are also lowest in August
[It's been noted that lowest testosterone levels occurred in months with the highest temperatures and longest hours of daylight].
Plus you say that "from the age of 8..." you think you've had "brief periods that had exactly the same symptoms as you now have all the time". Puberty [production of testosterone] in boys begins around the age of 8 – 10 years old...
*** But this might explain the hair loss as well as the constantly greasy hair and seborrheic dermatitis...?
On top of all that, cortisol levels will be affecting you too.
I must admit, my assumptions above look very neat, even I'm convinced! But please, I am not in any way medically qualified so don't get over-excited! I'd just get a referral / second opinion on your POTS.
Wow, amazing reply! Thank you so much. I'll try to reply to everything in order:
The POTS is slightly odd. I ended up going to The National Hospital for Neurology and Neurosurgery, which I think is sort THE place for that sort of condition. I was diagnosed positive to having it, but I actually dispute the diagnosis. The criteria used to diagnose it was a heart rate increase of either 30 beats when tilted upright, or an increase to over 120 beats per min. My resting heart rate was 106 and increased to 126, so they said that was positive for POTS.
BUT, at home I don't have a heart rate of 106! Or one of 126 when I stand! Sitting here my heart rate is 68, and if I stand it'll probably go up to about 80. When I attend an appointment, and undergo a test that I've never experienced, I'm (I hope understandably) nervous. Seeing as my nervous system is so sensitive, that nervousness is exaggerated immensely, and so my heart rate ends up much higher than it would be. Even when lying flat waiting for the test. So I get this vastly increased heart rate that I believe skewed the test results. If I did the test at home when not stressed there is no way I would be diagnosed as POTS via their criteria.
Also, my blood pressure didn't drop when I stood, I never get light headed, I don't and have never felt faint or passed out, no chest pain, bladder issuesm visual disturbances etc. So it just doesn't feel right. In fact the doctor who diagnosed it later admitted that there was something else going with me and that the POTS was likely to be caused by whatever that underlying condition is.
They did rule out the Hyperadrenegic type though. And in terms of treatment, all I was offered was Midodrine, but seeing as all that does is increase your blood pressure when you stand, and mine doesn't drop, it felt pointless. So I decided not take it.
Everything about the testosterone is VERY interesting! I was not aware of any of that. Your description of it makes it sound like there's a very good chance it could have something to do with what's going on with me. I've also read things here and there that testosterone can/does increase libido in men, and that is one of the strangest symptoms of my illness - whilst feeling so ill, and chronically so, I've had a really increased sex drive.
The only dampener on all this is that I had my testosterone tested 5 or so years ago and it was perfectly normal. Still, I'll definitely have to get it checked again just to put my mind at ease.
I really appreciate you taking the time to reply. I get the feeling I may missed something so will come back to this if anything else pops into my head.
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HAIR LOSS/THINNING
Levothyroxine and thinning hair! This seems common!
TSH 4.3, hair loss, drooping eyelid, cold, dissociated but 'normal'?
