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Mystery illness please help!
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Mystery illness please help!

Hi there,
           My situation is slightly complicated so I will try to summarise in bullet points.
Let me start by saying- 

* Since the age of 13 after i hit puberty, I've generally always had less energy than most people. My mum says I'd constantly complain of exhaustion and my heart racing. At the age of 16 I saw a Heart specialist to assess my palpitations, they gave me a 24 hr holter monitor which apparently found a high heart rate. They said it was nothing of concern and as the palpitations were something that came in patches and disappeared for weeks, I'd just dealt with it. 

*my period pains were severe and I always had heavy bleeding. I would faint in school every month from hot flushes and I would get very nauseous and vomit every single month. I'd get severe cramps down my thighs so that I couldn't walk. 

* Around the same time I started getting breathing difficulties, reflux and allergies after eating nuts, dairy, nectarines and a huge list of other foods. I'd be rushed to hospital with a tightened throat if I even smelt nuts or ate anything with artificial ingredients. Any animal protein except fish and chicken made me sick.

* I became extremely thin ( underweight) and lost a lot of weight even though I generally ate well. 

*  these allergies continued and I often got sick with colds and viruses at least once a month. I had severe reflux so we decided I'd see a gastroenterologist. He found I was lactase deficient and had h.pylori infection. I was treated with antibiotics and the reflux went away.

* 5 yrs later at the age of 21 i decided to see a naturalpath who helped me very slowly reintroduce most of the foods I was intolerant of with the exception of nuts. Over the course of a year I was eating almost everything with minor indigestion. 

* from age 21 till now I have continued having bouts of heart palpitations that make me cough weirdly & when they're really bad I will get dizzy if I stand up in one position for longer than 5 mins. If i move around I am ok. 

* in addition, I have had issues getting lots of sore throats, urine infections, colds and viruses so often etc. At least once a month. 

* around the age of 23 in the space of 1 month I put on 11 kilos without any change in diet. Confused and unhappy I went to see my gp who gave me a blood test. The blood test and a ultrasound confirmed I had pcos. I was treated with metformin for 3 months, lost about 4 kilos. I tried to loose the remaining weight on my own with exercise but never could. 

* i am now 27 yrs old, my periods have been much better for the last year or so, lighter and less pain, however, over 6 months ago I started getting bouts of nausea that would come and go. They would get at their worst after eating a fatty meal or any kind of animal protein I.e. meat chicken etc. this was unrelated to my periods. 

* the nausea would happen sporadically so I soon forgot about it, however, I started getting more and more intense attacks of nausea on my left side just under my rib cage, towards the middle and also the left side of my belly button. It was a very stabbing kind of pain and would wake me up at night. I'd scream and went to hospital a few times when my doc had suspected appendicitis. I was sent home each time with no answer the problem, just painkillers. I went gluten free for 5 months thinking that maybe I was gluten intolerant but my blood tests revealed no antibodies. 

* then in feb this year I started to feel like I had had the flu for a month, I had EXTREME fatigue. I was convinced I just was run down but I couldn't function.

* early march, it was the second day of my period and I was in unusually severe pain, severe nausea( my periods were much improved the last year or so). I visited my doc after passing a blood clot the size of a golf ball. My period was extremely heavy also. He gave me painkillers and told me to visit hospital if things got worse.

* the next night I had a chocolate coated ice-cream and literally as I was eating it all I could taste was metal. I had a friend try it and they said it was fine. 5 seconds later I started vomiting for about an hour non stop. I got severe pain in the same location on my left side and felt like it was the worst pain of my entire life. I was rushed to hospital and given morphine. They did blood tests and found a white cell count of 21. My kidney function was below 60 so they gave me antibiotics for a kidney infection.  

* for a month after discharge my symptoms got increasingly worse. The antibiotics did not help. I got very high fevers over 38, my blood was measured at the doc to be 160 on top. My heart palpitations were extreme and I would wake up drenched in sweat with severe nausea, shaking badly and wanting to vomit. 

* My gp tried 5 different antibiotics as they did not know what was making me sick, and a second blood test showed normal kidney function (week after visiting)around this time I  I  went back on the gluten in April as the only food I could tolerate was bread and fruit ice blocks. my fevers went away after a course of flagyl (5th antibiotic they tried) - keflex and amoxicillin did nothing.

* I also did an ultrasound of both the reproductive and general abdomen. They found a 'slightly contracted' gallbladder which was of no concern to my doc. They also found two 1cm cysts on my liver, a 1cm cyst on my left kidney. 

* since then I've done multiple ct scans and ultrasounds with no findings. a ct in June showed the remnants of a small stone and I passed some stone crystals and blood in a urine test.

* I saw a gastro who gave me an endoscopy and colonoscopy and found only blastocystis a common parasite that doesn't usually cause such severe problems. I was treated with 5 weeks worth of antibiotics and the parasite tests came back negative. It has been more than 3months since my treatment and the nausea isn't gone. 

* I've had many blood tests - all have been Normal (I've had at least 7) the only findings were slightly low iron (I've always been low), vitamin d of only 12 and low zinc levels. My thyroid results the last 4 tests have showed a tsh of 40, 35, 0.14 and currently returned to 30. I have seen an endocrinologist who doesn't believe this is significant ESP. Since at the onset of my 'mystery illness' my thyroid results were all normal.

* heart ultrasound - just extra ectopic beats

* since this incident I have been extremely sick, here is a summary of my symptoms in order of occurrence, up to fatigue are my everyday symptoms, the rest come and go:

*  severe consistent nausea - especially with bowel movements
* severe heart palpitations & flutter
* stabbing pain on left side and sore rib cage ( I can't sleep on it)
* chest pain
* neck pain
*sore throat 
*dizziness
* constant urge to poo but will only do small amounts sometimes 5 times a day, other days I will do 5 normal amounts but with semi soft stools
* fatigue
* mood swings
* bouts of insomnia that come and go
* entire body aches 
* always feeling hot
* fevers between 37.5 and 38 that come and go for 2 or 4 days and then go away. 
* chills
* sore lymph glands
* sore breasts 
* sensation of chest on fire with nausea
* headaches 
* 12 kilo weight loss
* breathlessness with exertion
* stomach cramps
* slight drooping of right lip and numbness

I believe that perhaps I have some underlying condition, perhaps genetic or perhaps a rare syndrome that's been responsible for all the health issues growing up and now. I'm fed up being sick and I just really want to be well, get off this roller coaster of illness and live a happy life. 

Thank you for reading,
Lena
14 Comments Post a Comment
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1756321_tn?1377771734
One study suggests that 4 out of every 10 PCOS women have impaired thyroid function due to Hashimoto's thyroiditis. Take that finding along with your fluctuating TSH levels, symptoms seen with both hyperthyroidism and hypothyroidism, and testing for thyroid antibodies is a must.

The three most common deficiency states found with Hashimoto's thyroiditis are vitamin D (92% in one study), iron deficiency, vitamin B12 deficiency (40% in one study).  There may be many other deficiencies due to insufficient stomach acid.  Vitamin D actives T cells to kill off bacteria and viruses so it is no surprise to see your vitamin D serum is down to a very unhealthy 12ng/mL.

***

"Hypothyroid & Hyperthyroid at the Same Time" by Jim Lowrance

"With Hashimoto's thyroiditis, which typically causes hypothyroidism (low thyroid hormone) some patients can have fluctuations from hypothyroid to hyperthyroid and this can be due to having high levels of thyroid antibodies. The antibodies that are tested for, when Hashimoto's is being determined, are the anti-TPO (thyroidperoxidase) and the anti-TG (thyroglobulin) antibodies (either or both testing positive helps confirm it) however, some Hashimoto's patients also test positive for antibodies called the TSI antibodies (thyroid stimulating immunoglobulins).

This antibody is what usually contributes to Grave's Disease or "autoimmune hyperthyroidism" however, some Hashimoto's patients have these antibodies as well as the TPO and/or TG ones, that typically cause Hashimoto's and is why they may experience spells of Hashitoxicosis or "intermittent hyperthyroidism". You almost could say they are suffering from Grave's and Hashimoto's, simultaneously.

Even without having the TSI antibodies present, Hashimoto's patients can potentially experience flares of thyroiditis, which can also cause mild hyperthyroid type symptoms that are not as severe as those caused by Hashitoxicosis but are still concerning.

Some patients who have both Hashimoto's and Grave's antibodies that cause continuingly unstable thyroid hormone levels are placed on a treatment called "block and replace". This is where they will block the stimulation of the thyroid with an anti-thyroid medication (slows hormone production) and then replace the patient with thyroid hormone therapy (replaces the diminished hormone levels).

Some Hashimoto's patients have been known to actually transition over to Grave's Disease, when having both types of antibodies and they become progressively hyperthyroid.  Other Hashimoto's patients will have hyperthyroid phases but will still become progressively hypothyroid afterward.

It may also be encouraging for patients with this condition to know that many Hashimoto's patients have the hyperthyroid spells more-so during the early onset of the disease but after time, the hyperthyroid spells subside and give way to progressive hypothyroidism."

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Hi red star, thanks so much for your input!

My endocrinologist I saw tested me for graves disease but I don't believe she tested me for hashimoto's. If not, I will see if i can look into it. I'll let you know what happens, Lena
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1756321_tn?1377771734
No problem. :)  Another condition to check out is dysautonomia.  This is a term used to described a group of conditions that are caused by a malfunction of the autonomic nervous system. Symptoms of dysautonomia can vary from day to day and minute to minute. A common type of dysautonomia is called POTS (Postural Orthostatic Tachycardia Syndrome). A couple of links below to check out...

http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction-FAQ/show/181?cid=196

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia---Links/show/744?cid=196
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Hi red star, I never heard of that till now, Definately sounds like me,  I'll add neurologist to the list of specialists I'll be seeing this year. Thanks again, lena
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Hi red star, just an update. My blood test showed Anti nuclear antibodies 'detected' and it says screened at a Titre of 80 'speckled'. In my previous blood test 2 months previously there weren't any detected. I'm not sure what this means. My doc didn't mention it to me at all

My tsh is now 0.42 which is just within normal limits and yet, I've lost 3 kilos this week. I've had my heart ultrasound back with 'trivial mitral valve reguirgitation' and an ultrasound of my salivary glands showed some small lymph nodes and intraparotid nodes.

Any thoughts would be great, thank you!
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995833_tn?1375604252
My clinical impression- Abdominal migraine in varied presentations.
Regards and best wishes.
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Hi maat thanks for that. Il look into it, never heard of that before, from what I've read it's a neurological disorder?
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995833_tn?1375604252
A childhood disorder percholating to adulthood in your case, and relates to release of some chemical messengers like serotonin.
Best wishes.
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Thanks
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Just an update for everyone. So apparently I have all the celiac genes and I just discovered a tiny pea size lump on my sternoclavicular joint near my neck, my doc wasn't concerned but I'm booked in for an ultrasound anyway. Hopefully this might show why I've had a sore throat for more than 6momths although my doctor doesn't think so. I'm Getting a 2nd opinion this weekend.
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1756321_tn?1377771734
The speckled pattern is the least specific ANA pattern and also found in people who do not have any autoimmune disease. However, a speckled pattern may be suggestive of one of the following autoimmune diseases: Systemic Lupus Erythematosus, Mixed Connective Tissue Disease, Scleroderma, Sjogren's Syndrome.  
  
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Thanks red star.
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Just an update for everyone, I'm doing a 3d ultrasound tomorrow after visiting a gynaecologist he suspects bowel endometriosis. He wants to do a laparoscopy, but I'm not keen on being opened up if he isn't 100% sure. Will a 3d ultrasound show bowel endometriosis? Of the any people they diagnose after laparoscopy, I'd like to know how many end up NOT having the disease? Does anyone have any knowledge about this please? Thank you!
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Hi everyone,
Thank you all for your advice. I was diagnsed with endometriosis just yesterday and am now recovering from surgery. It was behind both ovaries & also at the back of my uterus towards my bowel. Hopefully the pain and nausea will dissappear.but only time will tell.

This past year has been hell but im optimistic things will get better now!

Lena
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