My journey - no diagnosis

[Curtis90]

Hi All

I have posted here before, months ago now but unfortunately I'm no closer to any answers.

I'm going to spend time talking about my time before my symptoms came on as this is something I have never done before and it may give someone an idea to my problems. If you don't wish to read please skip to the next paragraph lol. At the beginning of Dec 2017 I set off to south east Asia to travel for a year, quitting my job and selling my car etc. I spent the first month in Thailand and had no health issues apart from diarrhea on occasion and a bout of sickness which lasted two days over Christmas Day and Boxing Day. I recovered from this pretty well and was my normal self to enjoy NYE. On New Years Day morning I set off on my journey to a new country (Laos). The journey entailed a 2 day boat trip where I met a group of 10-15 people that I would spend the next few weeks with. As ever when you meet new people all of a similar we enjoyed some nights out together, nothing ever crazy but more constant in terms of it occurring daily. Having said that I've always been sensible and know never to be excessive. It was around 16th January I first started feeling unwell, I woke up one morning and a group of us took a walk to a monument. Upon climbing one of the many flights of stairs I felt very light headed and weak, my heart was also racing. I knew this wasn't normal as I was very fit, running 3-4 times a week and attending the gym at least 4 times to weight train. Even when I was travelling I would keep up with some form of exercising among the miles of walking I would do daily too. The next few weeks passed and I just put it down to tiredness but my symptoms started to multiply and intensify when I moved to my next country (Cambodia). I was moving into area's that required me to take Malarone (an anti malarial tablet). The dose is start the tablets 1 day prior to the area, every day whilst in an area and then every day for a week after you've left. My symptoms changed at this point to dizziness/vertigo, feeling spacey, having extreme fatigue, muscle pains (mainly back, neck and legs), I would flush in the face and abdomen, I had really bad sinusitus, had severe headaches and generally felt ill. I put up with this for the next 2-3 weeks hoping it would pass, by this point I'd long come off the medication too. In this time I went to 2 hospitals out there and had tests done for Malaria, Dengue Fever, Hepatitis, all the usual things as well as viral STD checks. All returned Negative. I then realized I needed to return home, the flights home were a nightmare but I made it.

Since returning home I've been to see my GP upwards to ten times. I have also been to see infectious (tropical diseases), ear nose and throat specialists, gastroenterology for a sigmoidoscopy (which showed up nothing) and scans (which I'm currently waiting to have done). We have done so many blood tests alongside this too and nothing is showing apart from my TSH being slightly elevated and that my thyroid peroxidase antibodies are also elevated greatly. One other test which flagged an abnormality was a specialist test on me faeces for pancreatic elastase (enzymes which help break down food for absorbtion). I mentioned this result to my gastro and he dismissed it completely saying it's an irrelevant test (I'd built my hopes up so much that this was the answer and it was a huge disappointment to get that response).

As it stands I spend every day in my house, a 5 minute walk around the corner to visit my grandfather would leave me out of breath, my heart would be racing unbelievably and I would then feel fatigued for the rest of the day. This has been my situation now for 4 months since returning home.

My symptoms as of now are -

Lightheaded.

Easily out of breathe, heart races with the littlest of exertion.

Strong bounding pulse which is noticeable in my neck and stomach which is accompanied by a constant tremor.

Hair loss, thinning and graying of hair (on head).

Hair thinning and loss on entire body, most noticeable on legs, feet and arms.

Sinusitis and blood shot eyes.

Constant tinnitus (in the right ear).

Muscle aches and weakness (neck, back, and legs).

Bones crack all over body.

Stool has been odd and the same for months now and definitely not what I'm used to. There appears to be string like things within it but I've already had the parasite and relevant checks done.

Thank you for reading my situation, I know it's hard to suggest what could be doing this to me but any similar stories of symptoms or advise you may have would be appreciated. At this point I don't believe it has anything to do with me being in a different country.

[greygoose]

If you have high TPO antibodies, you have Hashi's. What was your TSH result?

[Curtis90 in reply to greygoose]

To date I've had 4 tests and these were the results in order of oldest to newest.

2.9 - 3.3 - 4.2 - 3.4

[greygoose in reply to Curtis90]

And, were they all done at the same time of day?

[Curtis90 in reply to greygoose]

I would say they were all done between 10am and 2pm

[greygoose in reply to Curtis90]

Quite a difference between 10 am and 2 pm as far as TSH is concerned. So, you can't really compare them.

TSH is highest early in the morning, and drops throughout the day. We usually recommend people have the blood draw early after fasting over-night. But, always have the tests done under the exact same circumstances.

[Curtis90 in reply to greygoose]

Ok I'm going to try get my doctor to send me for a TSH check next week. I will get the blood form and then do it the next day as early as possible. Thanks for this advice

[greygoose in reply to Curtis90]

You're welcome. But, another thing to remember is that, as you have Hashi's, your blood test results will tend to jump around. Do you know much about Hashi's?

[Curtis90 in reply to greygoose]

Not really no if I'm honest. Can it really be causing all my issues?

Am I right in guessing I'll have to wait until it jumps up to around 10 before I'll be treated?

[Judithdalston]

Malarone causes lots of people problems, so I would consider you have probably had a variety of different things happen to you on your travels in SE Asia...but you did the right thing re getting them checked out. High TPO shows you have thyroid autoimmune antibodies or Hashimoto's disease, where the antibodies mistakenly believe your thyroid gland is 'alien' and attack it, the resulting dead cells, along with thyroid hormones, are flushed away in the blood stream. This results in fluctuating thyroid hormones, the highs are known as 'flares', and they are unpredictable in nature. This is probably why your TSH have moved up/down. Some would certainly have hypothyroid symptoms, like you describe, with the higher levels, but unfortunately in GB at the moment GPs are reluctant to diagnose this till your TSH is 10 or over. You could help the Hashimoto's perhaps my going gluten free, at least as a trial for a few months, even dairy free. Unfortunately Hashimoto's is also characterised by poor gut absorption meaning nutrients from food, drink and supplements are low.You could also have your Vit D, B12, folate and ferritin tested as optimal levels, in the upper half of the ranges, improves good thyroid health. You will need further blood tests to establish what your TSH, FT4, FT3 and Total T4 are to establish what is happening to your thyroid hormones. Perhaps since you have been ill for some time and seen so many specialists you will be able to persuade your Gp to give you a trial dose of levothyroxin.

[Curtis90 in reply to Judithdalston]

Hi Judith,

It was truly awful, I mean I feel horrendous now but whilst I was abroad after the Malarone I was sure I was dying right there and then.

Does this possibly explain why I'll have really bad neck pain during certain hours of the day and then it'll be gone later in the day? It is worth while saying though that I consistently feel terrible overall, there are no good days.

I just started to supplement selenium, vit d and I've added a probiotic. I just won't be able to go gluten free. I'm not earning any money, unable to work and living at home. I just can't call the shots when it comes to the food I'm eating (especially seen as I'm not paying a penny for any of it).

I have FT4, FT3 and Total T4 results below but these were done back in March now.

TSH 4.28 (0.27 - 4.20)

Free Thyroxine 19.8 (12 - 22)

Total Thyroxine 105 (59 - 154)

Free T3 4.33 (3.10 - 6.80)

TG Antibody 35 (0 - 115)

TP Antibody 93.5 (0 - 32)

Thanks for your message and help.

[Judithdalston in reply to Curtis90]

I have difficulty attributing symptoms to hypothyroidism as have had lots of ailments over the years - starting with spine/ neck pain 40 years ago. I know it can be difficult following a different diet, and some gluten free food like bread is ridiculously expensive, but you might be able to make some changes for a shortish period like a month like eating more rice, rice cakes instead of bread.....to see if you notice any difference...see what the bill payer, and cook, say? Anybody else in the family/ house who'd like to loose weight for summer hols...you could all go on low carb diet which could solve your problems? Your extra supplements and selenium might improve your results , including T4 conversion to active FT3. Try to get a 50 mcg trial of levothyroxin from your Gp- plead your TSH is high ( at times because of Hashimoto's)... might start making a lot of difference to your symptoms , won't do any harm etc etc....Good

Luck

[Curtis90 in reply to Judithdalston]

Thanks Judith, I forgot to say I went gluten free from March-April but not very much changed for me in that sense.

I will ask my GP this Monday. I’m hoping he will put me on a trial of levothyroxine or at the very least the digestive enzymes from the pancreas test I had.

Thanks again

[Curtis90]

Thank you,

I’m uneducated on #2 and #3. Have you ever used them and what brand where they?

I will add a magnesium product to my supplements as well as vitamin c as of today.

[Curtis90]

Ok thank you.

Can I ask why you take both please?

[fortunata]

I went to Thailand in 2005, when I was 45. I came back very ill, with many of the symptoms you describe. I ended up in hospital and it took them five days of tests to find out I had Weil’s Disease. My thyroid began to fail a year later and I’m convinced the illness knocked my immune system for six, which precipitated the Hashimoto’s Thyroiditis I now have

[Curtis90 in reply to fortunata]

They’re just so many things to test for aren’t they and unfortunately for me (yet fortunately at the same time) my liver, kidneys etc have shown no signs of disfunction so the Dr’s aren’t as concerned. I don’t even have one other blood test which was off other than the thyroid antibodies!

How are you getting on with your hashi’s? I want to hear some positive stories but they seem to be few and far between

[fortunata in reply to Curtis90]

I’m getting on fine now and feel almost as well as I did before I got Hashi’s. I take 60mcgs a day of Liothyronine (T3), vitamin D3 and various other supplements. Also, I take 15 drops of cannabis oil a day and I’m on 4.5 mls a day of low dose naltrexone. All these things have helped a great deal.

I find I do best on a ketogenic diet and have been able to lose some of the weight I gained on that.

[Curtis90 in reply to fortunata]

For me maintaining weight is a challenge at the moment, my legs have turned to virtually nothing and I've the smallest waist I've ever been.

[marigold22]

What you eat is vitally important. I only started to recover from Hashi's (after 35 years) by following the AIP diet (auto immune protocol) for 6 weeks. It's fairly brutal until you get used to it, but I felt so so much better just a few days into it. After about 4 weeks you can re-introduce one food at a time, every few days.

aiplifestyle.com/what-is-au...

I have read perhaps hundreds of articles, books, etc about Hashimoto's, but the very best, clearly written & concise information on how to recover from Hashi's is by Izabella Wentz.

thyroidpharmacist.com/

She is a young American lady who was diagnosed with Hashi's whilst she was studying to be a pharmacist. Because she was so interested in health & medicine anyway, she researched loads & has now healed herself. If you go onto her website, you will see that she sends out e-articles free of charge; they are incredibly helpful. Be sure to click on all of her headings & links. Good luck

[Curtis90 in reply to marigold22]

Thank you, really appreciate you posting. Her writing as you say is very good.

[Curtis90]

I went to the GP surgery today and explained that I felt I couldn't go on like this. I asked for a trial of levothyroxine and a trial of the digestive enzymes but unfortunately my GP can't prescribe them to me without the recommendation of a specialist (endo or gastro). If he was to and I went into AF this could potentially be a sack-able offence?

So today he gave me the following:

- a new blood test form to retest my TSH and antibodies

- referral to a endocrinologist in Leeds, UK

- 24 hour blood pressure test

- 24 hour tracer (await hospital appointment).

It's worth saying I like my GP and feel like he has my best interests at heart but now unfortunately which is out of his hands I no doubt have a 5-10 week wait for my endo appointment.

I am at this point considering private, there is a recommended one from ThyroidUK which is fairly local to me. He has two options available, a cheaper first time consultation or for double the price a consultation with a male check including urine tests, blood tests, physical exam, ecg etc.

Does anyone have any advice as to whether this appointment would be beneficial? I'm out of work at the minute and if I have to pay for this private appointment I can but after my funds will be severely on a down hill spiral.

Thanks again

[fortunata in reply to Curtis90]

I would wait until you’ve seen the endo. But

you need to be quite insistent that you’d like to trial thyroid meds.

[Curtis90 in reply to fortunata]

Sorry, to be clear wait until the NHS endo? The thought of 5-10 weeks more with no step forward is a tough one but I guess I've already done 5 months..

[fortunata in reply to Curtis90]

I would hang in until you’ve seen the NHS endo. You could get a great outcome and it could potentially save you quite a bit of money if finances are tight.

One thing I’ve learnt in this game is patience. I first presented with Hashi’s when I was 48. I’m 58 now and feeling really great but it’s taken ten years to get to this point.

[StitchFairy]

Hidden Can you tell me where you got the information about boron killing candida please? I'm curious about thhis because I understood that it's normal for candida to be in the body, so you don't want to 'kill' it. It's more about getting it back to normal levels instead of being in the over-reaction state all the time.

[helvella]

Whatever the merits of boron, there are concerns over its impact on the unborn. Higher levels can result in shorter, lighter babies at birth. It is very likely advisable not to supplement with boron when pregnant unless appropriately tested.

Boron exposure through drinking water during pregnancy and birth size

Highlights

• Elevated water boron levels appear common worldwide but more screening is warranted.

• Boron has been suggested to be a developmental toxicant but human data is scarce.

• We studied a mother-child cohort exposed to water boron (0.4–10 mg/L) in Argentina.

• Serum boron > 80 μg/L was inversely associated with birth length and weight.

• A 100 μg/L increase in serum boron was associated with 120 g lighter newborns.

Full paper freely available here:

sciencedirect.com/science/a...

[helvella]

Was that a reply to me?

Did you mean this?

ehp.niehs.nih.gov/wp-conten...