I was just wondering whether if I posted a fairly detailed history of my case, symptoms and test results would you be able to offer any ideas about whether it might be thyroid or thyroid related? Or just any ideas at all really? (I was recommended to put this on here from someone within a Lupus group)
The illness began in November and completely out of the blue. I woke up feeling totally normal and then at just after midday I started to feel very weak and fatigued. This continued for about 30 minutes at which point I wondered if it was being caused by low blood sugar or lack of energy from having not eaten for a while, so I promptly tried eating food (even though I had zero appetite) and it made me much, much worse. I started to feel sick, shaking, sweating and heart thumping and also apparently became very pale – as was told by a friend. This continued throughout the afternoon until 5pm when I started to feel much better. In fact so much so that I believed I was over whatever it was and ate a full meal and went to bed assuming I’d be fine the next day. However, after waking and feeling ok during the morning, again at 12pm the exact same thing happened – fatigued throughout the afternoon. Come 5pm, I improved and felt much better during the evening. Every single day for the last 5 and a half years this exact same pattern has happened – 12pm become extremely fatigued and ill feeling, 5pm I improve and feel better. Unfortunately, this was only the beginning.
After this continued for about 10 days I went to a doctor who performed some routine blood tests that whilst didn’t show any specific illness, did show an increase in ESR, CRP, white cell count (neutrophils) and platelets.
These levels continued to rise throughout December, January and February, but then in April had begun to come down. By August they were all completely normal, and although I felt a little bit better, the illness remained.
Not only does the illness follow a daily pattern that I mentioned above, 12pm worse until 5pm, but there is a bizarre but obvious 6 monthly pattern – my blood tests are all increased during the winter months (October to March) and then from April they begin to improve until August when everything is normal again, and then come October they all start to rise again and the pattern repeats itself. This has happened every single year for 5 years now without fail. During the winter I feel worse too, as reflected by the blood tests, but come the summer when they all become normal I only feel a mild improvement in myself.
Recently, instead of my CRP, ESR, platelets, neutrophils etc. being raised as I said above, they all became normal during the winter and instead my ALT (alanine aminotransferase) became very high (313 and top of the range is 50), stayed this way throughout winter and has since become normal again as I’ve come into the summer months. I had my liver scanned and a hepatitis screen to check for liver problems but all was fine. I’ve since looked ALT up and found that it can be caused by inflammation to the liver, and the increased ESR, CRP, platelets etc. points to inflammation too, although only during the winter months for some reason.
Other symptoms I have:
Strongly beating heart – At first this was only present between midday and 5pm, but it has now become constant at all times. Whether I’m lying, sitting or standing my heart beats far too strongly all the time and I feel a constant pounding in my chest. Not necessarily too fast, just thumping away in my chest. When I stand my pulse rate increases too. This was shown as postural tachycardia by a tilt table test.
Hair loss – from body and head. Hair on my head is very thin now, and is still constantly falling out. Also lost hair from my thigh calf.
Constantly low temperature - low on waking (average about 36.0 C/ 96.8 F) and rises slightly throughout the day peaking at about 9pm at 36.4 C/ 97.5 F). Also if I stand, walk about or do any exercise my temperature drops.
Fatigue – the fatigue doesn’t make me feel sleepy, just weak and ill. It’s hard to describe exactly, but since this all started I haven’t felt right once.
Loss of appetite – Since becoming ill I haven’t felt hungry at all. It’s like my sense of hunger has been switched off.
Digestion – bloating, gas and wind. Along with a loss of appetite I seem to have lost feeling in my stomach, as if it is not sending me messages of when I’m hungry. I could go hours and hours and never feel hungry.
Weight – Has always been very low, and no matter how much I eat I can’t get over 8 and a half stone/125lbs. I'm 5ft 10" and 26 years old.
Skin – I have severe seborrheic dermatitis on my face, scalp and torso.
Nervous system – It feels like my entire nervous system is very oversensitive, but not in the normal way people talk about. When I look at a TV, computer or phone screen I get what feels like an adrenaline release. I will sweat, shake, my heart rate increases and I have to open my bowels. This happens almost instantly. I don’t find the computer or TV a strain on my eyes or struggle with the glare. In fact the only problem I have is this ridiculous body reaction. I also get the same reaction of an what feels like an adrenaline release when I need to open my bowels – instead of the normal message everyone gets that tells them they have to go to the toilet my body instead does the shaking, sweating and heart rate increase which will persist until I open my bowels and it then stops almost instantly.
Also to do with my digestion is that when I drink fluid my body often reacts by shaking and sweating. My digestion is so poor that I cannot drink during the day as it fills me up and would not allow me to eat anymore food, and with such a low weight I am concerned about it dropping even further. So I finish my evening meal and then have fluid. However when I do drink my body reacts by making me sweat and shake – again what feels like adrenaline. This happens with cold drinks, so is not to do with the warmth from hot drinks. This coupled with my extremely poor digestion has meant that I find it very difficult to consume the required amount of fluid per day, and sweating and shaking every time you consume fluid is incredibly debilitating. I realise these could all sound psychological but can assure you they are definitely not. They are physical reactions that I have absolutely no control over.
Other problems with the nervous system are that any minor stress or tension results in a massive over reacting. I find it difficult to watch something like a sporting event or a tense thriller as even the slightly tension causes my body to over react and I will again sweat, shake, and have the heart rate increase.
It’s really difficult to describe all these problems accurately as most people seem to always get the wrong end of the stick, like I can’t look at a TV screen because it’s too bright and my eyes are sensitive to the light, but that’s not the case at all. All that happens is my body sweats, shakes, heart rate increases etc.
Reaction after stress – If something does cause me to be stressed or nervous, as mentioned above, then the next day or a couple of days later I feel much worse. More fatigued, digestion worse, more sensitive nervous system. Also my temperature can increase and has on a few occasions after a big stress caused me to have a raised above normal temp or even fever. It seems that after something stressful then whatever the inflammation is that’s lurking in my body and causing my increased blood tests is able to have more of an affect, thus causing the problems I mentioned above.
The sun – I am unable to go in the sun as if I do my body also reacts by causing me to feel much worse the next day and then thereafter and also causes me to have an increased temperature or fevers. This to me seems like my body is viewing sunlight as a stress to it (merely guesswork though). I've only been able to go in the sun 3 or 4 times over the last 5 years and each time I've felt much worse after and had quite severe fevers a few days later too.
Sweating – whilst so many things cause me to sweat, I only do so from my back, armpits and legs. My face, head, neck, chest, stomach, arms and hands do not sweat at all, ever.
Sleep – I cannot get to sleep unless I eat something. I am wide awake and then I eat something small and I fall asleep within a few minutes. I often wake during the night and have to eat something small to get back to sleep again.
Racing thoughts – my brain seems to be over stimulated all of the time. I also often get racing thoughts when I eat.
Reflexes – very quick reflexes.
Greasy hair – within hours of washing it my hair becomes very greasy.
One last thing I have not mentioned is that along with following the seasonal-like pattern of improving blood tests during the summer months, some symptoms I have improve during these summer months and then can go altogether, but as the blood tests begin to rise again around October new symptoms will then emerge. So symptoms can come and go following this pattern every year and large parts of illness seems to be continually changing.
I DO NOT suffer from:
Brain fog or memory problems – my mind feels as sharp as it has ever done.
Dizziness/light headedness/fainting
Chest pains.
Headaches.
Visual disturbances.
Pain – I have no joint or muscle pain whatsoever.
Vomiting.
Immune system – been ill with regular viruses, none more so than usual though, and the immune system hasn’t struggled.
Depression – haven’t been depressed at all, just frustrated.
Doctors have performed quite a few tests on me:
TSH – in first few weeks of illness it was 2.2, now 5 and half years later it is 1.4.
T3 – 4.8 PMOL/L – normal.
T4 – 19.4 PMOL/L – normal.
Parathyroid – 2.8 PMOL/L – normal.
Cortisol – 901 NMOL/L – high. Range 180 - 620.
Echo cardiogram, ECG and 24 hour heart rate monitor – normal but cardiologist noted my strongly beating heart and an erratic heart.
Ultrasound of stomach – normal.
Ultrasound of liver – normal.
ACTH Stimulation (Synacthen) test – normal.
MRI of head and lumbar - normal.
Urine metadrenalines:
Normetadrenaline - 1.71 UMOL/24 HRS - Range 0-3.60
Metadrenaline - 0.87 UMOL/24 HRS - Range 0-1.90
3Methoxytyramin - 1.56 UMOL/24 HRS - Range 0-3.30
Anti-nuclear antibodies – negative.
Smooth muscle antibodies – negative.
Mitochondrial antibodies – negative.
Gast PL Cell antibodies – negative.
Liver Kidney microsomal antibodies – negative.
Endomysial antibodies – negative.
DNA binding antibodies – negative.
Rheumatoid Factor – normal.
Borrelia (Lyme disease) antibodies – negative.
Infectious Mononucleosis – negative.
Coxsacki B Virus – negative.
Toxoplasama antibodies – negative.
IgG – 11.7 G/L - Range 6-13
IgA – 2.81 G/L - Range 0.8-3.0
IgM – 0.51 G/L - Range 0.4-2.5
Chromogranin A - 51 - Range 0-60
Chromogranin B - 92 - Range 0-150
Compliment C3 – 1.38 g/l – Range 0.9-1.80
Compliment C4 – 0.28 g/l – Range 0.1-0.4
Glucose fasting test – 4.4 mmol/L - No range.
Insulin-like Growth factor 1 - 43.3 nmol/L - Range 23-70
Insulin-like Growth factor 2 - 67.3 nmol/L - No range
ESR – 60 mm/hr - Range 1-5
C-Reactive Protein – 77 mg/l - Range 0-8
Neutrophils – 12.4 x10^9/L - Range 2-7.5
Platelets – 460 x10^9/L - Range 150-450
MCV – 73.0 fL - Range 83-105
MCH – 22.9 pg - Range 27-32
MCHC – 29.6 g/dl - Range 31-36
Serum iron – 4.4 UG/L- Range 10-28
Iron Saturation – 11% - Range 20-55
Haemoglobin – 11.8 G/DL - Range 13-17
Alanine Aminotransferase - 313 - Range 30-65
I saw a former doctor who now works outside of the health service that diagnosed me as having adrenal fatigue, and prescribed a cortisol supplement, Nutri Adrenal I believe it was called. I took this for 2/3 months but it made me much worse - I felt very tight and tense, couldn't sleep at all and had a horribly racing mind and constant "singing in my head" where it was like I kept repeating songs or tunes in my mind. All that and basically no improvement in any other aspect of the illness, so I'm fairly sure it isn't an adrenal problem.
One last thing – I’ve noticed as I’ve become more aware and familiar with my symptoms that looking back over most of my life, there have been small events that lead me to believe that whatever this illness is it has been sort of within me or lying dormant for most of, if not all my life. Looking back from the age of 8 I can think of about 10 separate occasions where I became ill for a brief period that had exactly the same symptoms as I now have all the time. Also the fact that throughout my entire life I have been such a low weight (up to 20 years old I weighed no more than 8 stone/120lbs) and found it impossible to put any on. I personally now believe that whatever is the matter with me has been there for over 10 years and I could well believe it is something I was born with.
I can only apologise for the length of this and the amount of information included (and if any doesn’t make sense), it’s just that I’ve been ill for coming up to 6 and a half years now and I'm still no closer to figuring out what's wrong with me. All the doctors I have seen are either uninterested or seem to have absolutely no idea and are not willing to really try anything, so I’m left to myself to try and figure it out. In 6 years there hasn't been a single suggestion or attempt to treat even part of what's going on.
If anyone has any ideas or thoughts on any of this I would greatly appreciate them. It may seem like nothing but even the most random thought might give me something to go on or somewhere to start.
Thanks for reading!
Andy
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omron
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Andy, yikes! looks like you are a fast metabolizer. I wonder if there is anything that would reduce that. Your adrenal glands are definitely off. I don't know if anyone is knowledgeable enough to help you. I do like this functional medicine doctor and have been posting his videos about low thyroid and he talks about cortisol in two of them, maybe you can glean something from them or look up more information. These doctors use evidence based symptoms.
Your cortisol is high? Have you had other cortisol tests? A 24 hour urine collection one? Vitamin b12 deficiency affects your nervous system have you had that checked? And your iron is slightly low have you had supplements?
Just to be sure you should ask for thyroid antibody tests in case of hashimoto's.
There's definitely something swelling and being fought but what?
I hope you eventually find your answer and come back and let us know.
Yes I agree allergy is some of the problem. You can be allergic to light be it Sun or light indoors.
I am electrosensitive even these SAD lights might be a problem.
You need to get your food allergies checked out. That will calm things down Breakspear Hospital even have vaccine for light as well as many environment
Problems and food you can even
have your own made up.
It seems viral.
You have caught some thing it's just going round the system.
I have Lyme Disease it can make things worse it's getting quite common though the NHS is still in the dark ages.
It can impersonate any illness.
Have you tried a sauna? I know you say ur hot but it just might need something to push it out.
I would say high cortisol too...your adrenals go into overdrive before they go into exhaustion. It might be worth researching ways to reduce cortisol....I had a lot if similar problems . Did you ever have a thyroid antibodies test? I might have missed that . It does sound like thyroid and adrenal . Also sex hormones, how is your period? Have you looked into estrogen dominance? X
Thyroid results look normal. Clearly the raised ESR and CRP point to something inflammatory, even though they have ruled out a lot of autoimmune stuff already by the looks of it. Maybe you have some kind of chronic low level infection?
How recent are those blood tests?
The following ones show your iron is low and you have some kind of anemia. Has this been treated? Haemoglobin of 11.8 for a man is too low.
MCV – 73.0 fL - Range 83-105
MCH – 22.9 pg - Range 27-32
MCHC – 29.6 g/dl - Range 31-36
Serum iron – 4.4 UG/L- Range 10-28
Iron Saturation – 11% - Range 20-55
Haemoglobin – 11.8 G/DL - Range 13-17
I remember mine dropping that low after I had a post operation bleed. I felt like crap for months until it recovered; increased pulse - just walking around would make my heart pound incredibly hard. Dizziness, breathlessness, fatigue, etc.
Agree! Of course I would tend to say Vitamin D as seasonal - but also the fact sun intolerant. Low iron should have been picked up & sorted with supplements - however many GPs just say 'eat a healthy diet'. J
Omron - If GP won't test for Vit D - here's a link to a home test for £25 (NHS lab) best wishes
Hi i dont know much about your readings but the symptoms you are desrcribing sound like exactly how i felt and it turned to be intolerance to salycilates, and gluten both of which cause all of your symptoms and more, thankfully once i sorted my thyroid meds out i was okay again so it was kind of a secondary condition for me but there are people who have this intolerance, it might be worth getting checked out as salycilates are in everything, food, toiletries,cleaning matierials,perfume etc.
Thank you all for the replies, I'll take each one by one and try to reply to everything that's been asked:
reallyfedup123 - I've had a test for celiac but haven't ever tried actually removing anything from my diet. As to what I eat for breakfast - it tends to usually be some sort of cereal and fruit, maybe some toast, although not on a regular basis. I didn't realise so many cooking utensils and materials could cause an allergy or reaction! Will have to look into that.
Having both Hashimotos and Grvaes can cause the raised ALT? Didn't know that either. It's strange, I had so many tests done and yet not my thyroid antibodies. I've recently got in contact with the hospital who did the tests just to double check and make sure they didn't do the thyroid antibodies. They're sending me all the results so I'll know for sure soon.
Heloise - Thanks very much for the video, I'll check him/them out.
Perky - I have had other cortisol tests. It's bizarre, but my blood levels always come back high, the few urine I've done have been pretty normal, and the saliva tests I've done are usually low. So I really have no idea where I stand with Cortisol! My vitamin B12 is fine though. I completely forgot to include that in my original post but it's perfectly normal according to the range.
Carolr - I tried a SAD lamp once, as I seem to get worse in the winter and it was suggested that people with SAD get better from using those lamps, and it made so much worse! My temperature went up and I became really inflamed. I've also been tested for Lyme but that came back negative, although I've read a lot about false negatives with it. Never tried a sauna, didn't even realise that could help!
Marz - thanks for all those website, I'll check them all out.
JoannaArt - The Cortisol is weird, I can't work it out. All my tests say different things. High cortisol in the blood, low in the saliva, normal in the urine. What I do know though is taking the Nutri Adrenal supplement made me much worse, so I'm guessing that I don't need to raise it. Never had thyroid antibodies tested, definitely going to though. As for sex hormones.. as a guy I'm lucky enough not to have periods! But my testosterone was fine when it was checked.
yenool - Yeah, I've had a low level infection suggested a few times, although I saw a top virologist who didn't seem to think so. The blood tests aren't that recent actually, some more so than others. The haemoglobin seems to change depending on the season. Usually in the winter it is low and then becomes fine again in the summer, so treating it is tricky.
Doh! Forgot to include my Vit D levels as well. They're low. I know I need to get them up. In fact a consultant tried to get me to have vitamin D injections but my GP said he didn't have the skills or license to do them, so it never happened. But everyone always mentions low vit D as being a real problem, so I'm definitely going to get it sorted.
hampster1 - My Vit D is definitely low, but I'm not sure if it's the main cause of the summer/winter pattern. Even in the summer I don't go in the sun as it makes me really, really ill. So I doubt my vitamin D is being raised during the summer, certainly not from natural sunlight. The Coeliac blood test was negative, but I'm guessing that doesn't rule it out for sure? Never treated for the iron deficiency. I wasn't tested for Cushing's, just Addisons - I had the Synacthen Stimulation Test, which found my adrenals were working fine, apparently. It's the Dexamethasone Suppression Test for Cushing's I believe? I've researched the symptoms of Cushing's and it doesn't really fit with me much, but you think it's worth pursuing? And yes, B12 levels are fine.
annie1978 - Will definitely look into the salycilates, thanks!
MaryMary - I've been abroad for a few holidays, Jamaica being the most exotic. I guess It's possible I could have picked something up from there. As for the Vit D, it's definitely low, but as I've said earlier, as I never go in the sun, even in the summer, I don't see how it could be getting any higher and improving my symptoms. I've thought about a change in what I eat during the summer/winter but can't find anything that stands out. And yes, the CRP indicates inflammation. Unfortunately it's unspecific, so doesn't show where it's coming from.. or why it would only be in the winter.
Thanks everyone for the replies, I really appreciate it!
Have you had calcium and parathyroid hormone (PTH) tested? You must check that these are normal before you supplement vit D, as low vit D can be a sign of parathyroid disease. Post up your vit D and calcium/PTH results if you have them.
A negative Coeliac result does not rule out Coeliac disease, if you have repeated gastro symptoms and persistent low iron then you should probably see a gastro and perhaps have an endoscopy to see what's going on. They can do biopsy's etc to check for CD. Really from what you are saying with your low nutrient levels you seem to have some malabsorption going on. A gastro can also test for other things like H Pylori infection and intestinal parasites.
And please post up your B12 and folate results if you have them, because being in the normal range means absolutely nothing. The ranges are set way too wide and the B12 test is flawed anyway.
Re Cushings I don't know enough about it to advise, just mentioned it as your cortisol was high.
H
in reply to
And you're very clearly iron anaemic, did your GP not say anything about this at all???
You can buy your own vitamin D legally online. It is a food supplement not a medication. There are lots of guides out there on how much is safe to take. Google the vitamin d council. 1 tablet a week of HUXD3 Colecalciferol 20,000IU is what my GP prescribed to me for low levels.
I think you could get a daily iron supplement from the pharmacy as well. Your levels are low and I am really surprised you haven't been treated for that by the GP. GP's are normally very good at treating things like low iron because it is such a common cause of feeling unwell.
Have you seen a rheumatologist about the raised ESR and CRP and if so what did they say?
I'm sorry you are feeling so unwell. I know this will be made even worse by the fact of not having a firm diagnosis :(. What has the GP / Doctors said about a potential diagnosis or the next steps?
B12 Folate, ferritin levels? I initially thought adrenals but having read info maybe you're the other way and trending to cushy. Vit d levels? That's all I can think if right now.
I'm a bit late to respond and can see you've been given some excellent advice which I can't improve on. But I feel compelled to write because I can personally relate to some of what you describe.
In 2009 I suffered what we've come to call my mystery virus. I'd just returned from a holiday in Australia, and it was around the same time as Swine Flu was around. The day after I got back I suffered an "attack" very similar to your 12pm episodes. This went on for some months. First my GP thought it might be swine flu and told me to come back in 2 weeks if I wasn't feeling better. Nothing changed, so I went back and had some regular blood tests. Thyroid and anaemia both came back clear, but CRP was elevated and continued to climb intil it reached 220. Because I was just back from abroad I was sent to the London Hospital of Tropical Medicine so they could rule out malaria and other tropical diseases. I was treated there for several months off and on while they tried more and more tests but failed to find the source. Eventually I began to feel a bit better and was discharged without any diagosis. Looking back I now realise that I never was properly well again and had ups and downs - nowhere near the extent you describe, but definitely not back to being my old self. I was tested for coeliac at the time and that was ruled out. CRP eventually reverted to near normal levels. I continued to have a pounding heart from time to time, as well as awful weakness and fatigue, and low body temperature.
In 2011 I went back to my GP because I was feeling so ill in the mornings. I saw a trainee doctor who was on secondment to the Practice as part of his degree. He thought it could be thyroid - I kept insisting that had been tested and was fine! He pursued it even when TSH was normal and finally the antibody test came back with a result and a diagnosis of Hashimoto's. I started treatment immediately and slowly things began to improve.. In 2012 I spoke to my Endocrinilogist because I was suffering rib pain and he told me to start taking vitamin D. The blood test showed me to be insufficient rather than deficient, but since starting to take supplements I have felt more improvement. A few months after starting the supplements I realised one day that I had watched an exciting programme on television without having to leave the room because my heart was pounding.
I've always eaten a fairly healtthy diet and gave up alcohol 3 years ago as I knew it was something my body really could do without. Although I was feelng very much better I still kept thinking that there must be something else I could do to improve well being. So at the end of 2012 I decided to try going gluten free - despite the fact that the coeliac test had been negatve. It has been a revelation. I am so much better - I think I absorb both my food and my medication much more effectively and the diarrhea and sensitive bowel problems I have had for several years are quite rare now. I never suffered the constipation that many thyroid patients experience - always the oppposite or me.
It has been a bit of a process of trial and error, but I think my experience confirms the advice others have given you to have the antibody tests, check out viatmin D and consider food allergies, especially gluten. I really hope you get some answers soon.
I agree with the giving up gluten. I have five autoimmune disease and unfortunately people are told they are ok on it if they don't pass a standard coeliac disease, but of course now the correct information is beginning to filter through: 1. bmj.com/content/345/bmj.e7982 2. bmj.com/content/345/bmj.e79...
Are you a dowser? I have or was before hypo got the better of me and strangely diagnosed myself with adrenal problems years ago, its very difficult dowsing oneself .
Yes I dowes it's better to do it with two people if you get too fatigued you can get the wrong answer on your own.
One holders the pendulum or dowsing rod
Or part of body you can use your hand or
Head. The other asks th
question.
The other way is
to look at products pick
Them out of the fridge if they stick to your hand you need it. Likewise around
supermarket.
You also need to watch your environment for obvious things like mobile phone transmitters, wind turbines and power stations. Also the ground where it is not always possible to feel the energy. There's only 8% of us that are electrosensitive in the UK.
So the government can do as it likes. Making out
it's only the psychological
effect rather than the physical effect.
There are various devices on the market take it from me they don't really work.
They are usually designed by someone who is not electrically sensitive.
I use a raditech the maker said it repels the land energies he knows it's not good enough for electropolltion.
Ideally you need to find a clean place or be able to
Clear it without too much cost.
The trouble is most dowers are not electrosensitive and neither are their clients.
As I went to see Dr P over
in Malvern.
The train journey was bad the energies not good.
The lady's whose
house he held his clinic
was not good she's payed a dowser to do this. The site before he put in copper was nowhere near good enough. As I say theirs only 8% who are electrosensitive. And a lot
more who want to be.
because of them we get marked down.
I can swing a pendulum but my body tells me what's going on.
The pendulum is like using a meter it shows other people what's happening.
Sometimes I have to ignore what's happening.
It's very hard to find a place. Churches are the worst place stone circles,
Calcium - 2.50 mmol/L (Range 2.15-2.55) (I had another calcium test a few years before this and it was 2.63)
Serum B12 - 756 NG/L (Range 180-900)
Serum Ferritin - 279.3 UG/L (Range 20-300)
Serum Folate - 21.2 UG/L (Range 4-24)
Re the anaemia - my GP, and all the doctors I've seen, have said and done nothing. They've done nothing about all the raised or low blood levels. The problem is the lack of persistence in the results. As they all become completely normal (and I mean every single one of them) in the summer then all the doctors have to do is re check, see they're normal and then wash their hands of it all. It makes it very difficult to justify or argue anything, especially seeing as they don't want to take any notice of the glaringly obvious pattern. I'll follow up more with Coeliac though.
Pink_Bear - Wow! There are definitely some very strong similarities between us. Would you mind if a messaged you for to get a few more details?
Thanks again everyone! If there have been more replies whilst typing this I'll make sure to get back to you as well.
On the face of it your B12 and folate look fine. We know that you're iron deficient, so your top of the range ferritin is likely caused by inflammation, which we know you have re elevated ESR and CRP.
I would say your calcium level is on the high side. I'm not big on knowledge re parathyroid disease but there are some on the forum who are. However your PTH is low in the range which is the correct response to high calcium, so maybe that is not the issue?
Whatever way you look at it, your iron and vit D levels on their own are enough to make you feel awful, you need to get these treated and investigated as to why they are low. Even if you don't have an autoimmune thyroid problem, without vit D and iron your thyroid won't work properly. And just because it only happens in winter doesn't mean you have to spend half of the year suffering with no treatment, does it?
If only signs & symptoms were taken notice of, not relying on everything showing up in blood tests, I don't know where you could find a dowser 'tho - but here's a link to an Indian doctor diagnosing Hypo...
Is your physician a medical dr. or a naturopathic ? I too have been struggling with many symptoms , some like yours. My naturopathic dr. has me do at home blood spot and saliva tests ( for thyroid, adrenals and hormones ). Unlike you, I am 58 and five yrs. post-menopausal. I did read your letter to the end. It does seem like maybe you are having problems related to your hormones ? You didn't mention your diet , could be an allergy, allergic reaction or do to something growing outside which isn't present during the winter months.
Humm Andy watch out for psychiatrists if they don't understand your condition that's what you will get.
T3 might be a problem that effects the adrenals.
Low T3 syndrome it's not the thyroid but poor cell conversion.
There was a u tube on here about 2 ladies who approached the Scottish parliament about T3 problems. They mentioned that stress in childhood had an effect
On the levels of T3.
Childhood infection if you do not get them by natural means your immunity is not good
to defend you from anything else.
If the mother gets vaccinated she does not produce the antibodies to transfer over to the baby.
You should also get your Reverse
T3 checked Genova do a blood test. The NHS don't normally do that. And a 24 hr urine for T4/T3
Genova again. As the blood is not the same low T3 can be hard to diagnose.
Have you spoken to your relations. Has anyone had undiagnosed conditions.
Mental health that turned out not to be so. Because as sure as eggs that what doctors will do.
There's more than me on here that's had their notes changed removed. The NHS do not have the soft ware to stop it.
Try and make sure you keep copies. There's some odd buggers out their and they are called doctors.
They hide their mistakes like the Shipmans of this world.
"I do dowse but I do read and ask questions. "
I don't have a web site.
You could ask thyroid Uk if they would give you my email.
Aluminium lead cadmium mercury are not the problem it's other elements higher up the periodic table that are missing. Like magnesium that displaces other elements. Also salt can be increased for the same reason. Salt is a good antiseptic.
A Lyme flush would help the adrenals as well.
Alternate salt solution and vit. C. Throughout the day.
Dissolve about a teaspoon in warm water then a vit c either tab or soluble. A couple of hours later. Do this for 5 days if your worried about high blood pressure add magnisum.
What is the T3 in your thyroid results-is it an FT3 (free T3) or a TT3 (total T3)? And what is the range? FT3 is the most important thyroid test according to many patient advocacy websites as it shows what is free and available to use in the body. If it is an FT3 it could be low???
I am no expert,,merely someone that has suffered quite a few of your symptoms mysteriously for a couple of years and diagnosed with fibromyalgia. Just recently, after being tested again, I am now officially hypothyroid. I would say continue with diagnoses by eradication where you can and keep researching stress and high cortisol levels in conjunction with thyroid and or adrenals. If it is not the cause it is definitely affecting your endocrine system. I don't know if these links will help but her goes and good luck: stopthethyroidmadness.com/a...
I see you were diagnosed with Postural Tachycardia. I'm asking you this because I too suffer with a whole range of bizarre symptoms and quite a few of them match yours. Can you explain a little about your heart rate increase when standing. What is it when you're seated and lying down and what it goes upto when standing. Is your heart rate increase sustained? I get a huge spike when changing position (60-70 beats) but it comes back down after about 2 minutes. I see with POTS it needs to be sustained. Stay strong!
Hi Andy, my oh my, you have a lot to think about and digest. Someone asked about a naturopath or some alternative healer? Is that possible within the NHS? I think with chronic conditions, you have to dispense with conventional doctors. I don't even know what tests there are but can you find out if you might have heavy metal poisoning? Do you have lead paint in your apartment? There is also selenium, mercury or antifreeze (which they put in some drinks now). A kinesiologist might be able to help. This just sounds much more serious than a food allergy.
I don't know if even a parasitic infection would cause this but there are formulations you can take if your body is up to it.
This is so very curious but you are young and once you get a diagnosis you can probably heal quickly. That's what I'm hoping for you.
What a detailed report, thank you for having the patience to do that. My first thought was adrenal/thyroid as your fatigue seems very familiar. One thing we are told though that vitamins and minerals need to be optimum to help get our thyroid meds into the cells so that may be the place to start, testing for such levels of those plus full iron panel. It certainly won't do you any harm and may well give you a better platform to start looking at other things. Then I think its down to making a list and trying them systematically. Trying more than one thing at a time could be confusing. I like the allergy suggestion so screening can be done for some things and possibly tick a few things off relatively quickly. Where you go next may well depend on what the tests indicate.
Please keep us informed as to your progress or lack of it and post any results and ranges along the way. As things are eliminated or remain as a possibility then it may well point to what to try next. Keep a diary of what is happening when though it sounds as though you have been doing that already but note every 'symptom' to see if any sort of pattern emerges. I once had gut problems and I swallowed tubes had various scans etc and was finally told IBS. One day I was just chatting to my GP and mentioned could I have a form of hay fewer. I'd been out one day and the smell of wallflowers was overwhelming and not only did I feel sick my throat seemed constricted and I got very breathless. My GP jumped out of his chair shouting Brassicas!! It turns out he was an Oxford graduate and at his time of study everyone wanting to do medicine had to do a science course to judge ability to continue. He choose to do Botany and found out that wallflowers were brassicas so I cut them out of my diet and problem solved by just my chance remark. I do hope you can find some relief soon and get some clues as to what is going on. Good luck!
Hellbell - Thanks for those links. I'm also sure that the cortisol levels and thyroid/adrenal certainly have some involvement, it's just proving extremely difficult to piece it all together.
gaga101 - My heart rate is a little odd, as I was diagnosed with POTS and yet I'm not convinced at all. Firstly, it didn't increase by the required 30 beats, and also didn't go above 120 beats when tilted/standing. Also my blood pressure doesn't drop when standing or tilted. So I'm not really sure how they came to the diagnosis of it. To answer your questions: when I'm seated my heart rate is generally very normal. Usually ranging between mid 60's to low 70's. Average would probably be about 70. Lying is similar or a little lower. When I stand it usually increases by somewhere between 10-20 beats. So if it was 70, it would go up to between 80 and 90 beats. The increase is pretty much instantaneous, and is then sustained until I sit down again. I also don't get ever get lightheaded or dizzy and never have done. So the POTS diagnosis is odd.
Silverfox7 - Yeah, I'm seeing that even if it wasn't to solve all my problems, getting all the vitamins in order and at optimum levels will certainly do me no harm, and is likely to help. The same with allergies - I'm already planning to try and do some testing and ruling things out. I'll keep everyone informed as well!
LouiseWarvill - Can't believe I left out the reference range for those! Idiot! Ok, here they are:
FT3 – 4.8 PMOL/L - Range 3.5-6.5
FT4 – 19.4 PMOL/L – Range 12-22
The FT3 looks alright to me (but I really have no idea!) and the FT4 is ok, but seems to be at the top end of the range. That's been tested a couple of times and has always been on the high end of the range. Not sure if it means anything.
Apologies if I missed anyone out! Had so many great replies that I'm having a hard time to keeping up with everyone.
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I had similar symptoms when i first got sick but it remained a mystery to my doctors and they blamed it on anxiety. It was all triggered after an anaphylactoid reaction to a steroid injection and antibiotics that should never be given with the steroid. After years of telling me it was all in my head they discovered that i was hyperthyroid with a multi nodular goiter and my adrenals don't work properly.
After 6 years of this feeling like hell i have been tested for a many number of things. I was an archivist at the beginning of my Iillness dealing with mouldy documents. I have since tested positive to trichothecene mycotoxins from black mould. Apparently that destroys necrotising the adrenals and thyroid. The steroid and antibiotics would have lowered my immune system and allowed the mould to take over and cause chaos.
My illness is so odd that i was tested for porphyria last year and had one positive and 3 months later, 1 negative test. Porphyria causes liver enzymes to raise and fall, gut pain, weight loss etc many of the symptoms you have and it's genetic. Pee in a glass, put half into another glass and keep in the dark. Put the other half in the sun. The one in the sun will change colour if it's porphyria. Porphyrins raise due to lead, arsenic and mercury poisoning too. Do you work with any of these?
Link me you may just end up a medical mystery as I still haven't found a doctor to pin down what's wrong. I have thyroid disease and adrenal problems but also tested positive once to hereditary co property ria and trichothecene mycotoxin mould.
Doctors are only human and medicine isn't that advanced so they just don't have answers. Did we really advance much from the middle ages.
Trichothecenes can cause all of the above and more. The real mystery is how the medical community doesn't acknowledge mould as the root cause of so many illnesses.
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Blood Results & GP appointment
Help with Coeliac test results needed
Blood test results help - Low T3 and T4
High thyroglobulin antibody results
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