Blood Tests Good. But Health Is Declining. Burning up after eating or even drinking water. No Energy!

[Angelsway]

It doesn't matter whether. I drink water or eat something. Either way I pay for it. It's embarrassing while out and on the run when this happens. It's horrible. And when at home and this happens. At least I feel safe. This started a few months back. And has gotten worse. For over three years now I have had issues with rapid weight loss, and always have blood tests run. Everything shows up normal. However, I keep getting worse in my health. Not only burning up, but now getting to the point of not knowing if I am going to make it or not. Meaning fainting, the weakness that occurs with this is very energy draining. And the mind just feels like it's been totally zapped. Sometimes, I feel like I just want to die.

[startagaingirl]

Hi - you say blood tests are good. So that members can see if they can help you, could you give us your latest thyroid test results with ranges - the numbers in brackets, for example TSh 6.5 (0.1-4.8).

[Angelsway in reply to startagaingirl]

I am going to get my copy of the blood work done about a month ago. Will do this tomorrow. I am wondering myself now. What it was? Since the doctor didn't call or should I say one of his nurses. I just thought everything was fine.

[Marz]

Do you have a thyroid issue ? Sounds like adrenals or could you be Hyper ? You sound poorly so hopefully you will be better soon ....

[Raventhorpe]

So sorry to hear your feeling so awful, don't give up. Put your thyroid bloodtest result on here and members will help you, sometimes doctor's say bloodtest for thyroid are normal but normal is not optimal and you can still feel ill. Could you tell us bit more about what you have, are you hyperthyroid or hypothyroid ? What medication are you on and what dosage. We are all in the same boat on here and have felt at times like you do now but with the help and support from our forum have managed to get the right medication at the right dose and feel much better for it. This a a very caring community and there are lots of knowledgeable people on it who will help and give support to you.

[MMaud in reply to Raventhorpe]

Angelsway - have you had a full, general panel of bloods done recently? The annoying thing about some of the symptoms we tend to experience are common across many conditions. In your shoes, I'd want a good general overview, as well as any specific, presumably thyroid related tests done.

Do you check your blood pressure fairly regularly?

Again, personally, I would never be satisfied by feedback of "fine" or "normal" in response to any tests. I want to see the actual values of any tests.

[MrsRaven in reply to MMaud]

Absolutely. I never trust anything the doctors say now. Been fobbed off too often for too long. Get your test results, put them up on here. And good luck.

[Angelsway in reply to MrsRaven]

I will do this.

[Angelsway in reply to MMaud]

No I never check the blood pressure out. Honestly, being a caregiver. I usually never had time to really take care of myself. This is why at 56 soon to be 57 feel like the walking dead most of the time.

[HLAB35]

In addition to blood tests I'd recommend testing your resting heart rate - it should be less than 90, but ideally be closer to 75. Endocrine disorders can manifest in heart problems too, as hormones control the heart rate. If you're getting palpitations see your doctor (they'll take notice of a heart issue, believe me!)

netfit.co.uk/fitness/test/r...

[Karen321]

I had 'normal' blood tests for three years before I was diagnosed with hyper and Graves. My symptoms were anxiety, panic attacks, rapid weight loss and gastro problems

[elaine2447 in reply to Karen321]

It's so scary when you know something is wrong but tests are "within the normal range" I detest and loathe that expression as I guess many others do. I didn't suffer for three years like you, well I would have been dead I think but 13 weeks of racing heart, anxiety, trembling, insomnia (I mean around 1 hour's sleep per night courtesy of a Xanax) and horrendous nausea was nearly the end of me. It was "depression"!!!!! Was eventually put on mirtazapine which helped but I knew it was masking the symptoms. I now believe it was hyper and Graves as an ultrasound some months later revealed what the doctor thought was Graves because of the all the inflammation. Then months later, antibodies test done which went over the lab measurement and was told it was Hashimotos and slightly underactive thyroid. Still suffering not so severely but no rapid weight loss, the opposite.

[Jenny1410 in reply to elaine2447]

What exactly is graves and hyper as Iv been told many times it could be depression

[greygoose in reply to Jenny1410]

Hyper is when your thyroid gland is making too much hormone, for some reason. Your TSH is suppressed, and your FT4 and/or FT3 are well over-range.

Grave's is when you have antibodies that are stimulating your gland to make too much hormone.

Being hyper causes all sorts of nasty symptoms, but I'm not sure depression is one of them. It's usually hypo that causes depression. Are you hypo? Are you optimally medicated? Depression is a symptom, it doesn't cause symptoms, like doctors seem to think.

[Jenny1410 in reply to greygoose]

Never been checked I had small nodules when scand but now seems like I have three and my glands are swollen have been for a long time I asked to have them scand again and the doctor refused

[greygoose in reply to Jenny1410]

Jenny, if you want help and advice, it would be better if you asked your own question. That way, a lot more people would see it.

[Jenny1410 in reply to greygoose]

That's ok I'm just scrolling thro

[Angelsway in reply to Jenny1410]

My doc refused me. When I told him I thought I needed a colonoscopy and the other one which I can't remember right off hand. He said, I didn't need it? But every time it was done. Like the last time they found 19 polyps, plus inflammation in the Esophagus. That was a different surgeon that done this. I was immediately put on meds for the inflammation.

I am praying for you. I understand what you are saying

[elaine2447]

So sorry you are suffering like this and it's seems worse when you feel you need to be home which I know from my own experience worsens the symptoms. A friend recently has been complaining about feeling really hot after eating, not sure about drinking water though. Her doctor actually took it seriously as she did have a problem with her adrenals. He suggested it could possibly be this which I had never even heard of although I have heard of hypoglycemia. Some of the symptoms do include what you are suffering. He has given her a glucose monitoring kit which she is about to start this week. Try not to worry, I know it's easy to say that, being the biggest anxiety freak on the planet en.wikipedia.org/wiki/React...

[Julienew]

Angelsway - I have tried exclusion diets before but have still felt that i was having issues with some food. I had no idea what so recently did the York food test yorktest.com and it showed I had a reaction to cows milk - apparently it's the protein in it, so the lactase tablets I'd been using were not enough. Also egg white and yeast. Also need to avoid gluten.

Do you feel like it is an allergic reaction to things? Sometimes I feel like food is "poisoning" me. I flush, temperature goes up, heart races and any energy I had drains away. Stomach cramps and bloats.

Recently I have been looking at Mast Cell disease. I realised that when my ME was bad, it felt almost like an allergic reaction (stuffy nose, watery eyes, fuzzy head etc) although I have never had an anaphylatic shock reaction.

I came across this blog this morning and it has a lot of information.

mastattack.org/2017/04/mast...

Keep looking. There will be an answer somewhere.

[HLAB35 in reply to Julienew]

Hi Julie, Some mast cell disorders are helped by taking l-carnitine.. if that's what you suspect you have, it'd be worth looking into. If you've had ME look on the Dr Myhill website for more information relating to your symptoms (if you don't already know about it anyway :).

N.B. There is a link between mast cell disorder and mthfr mutations - currently a hot topic for research.

[Julienew in reply to HLAB35]

Thanks HLAB35. Have looked at Dr Myhill's site a lot over last few years - a mine of information! Had ME for 18 years. Some info in my profile.

I am seriously looking at both Mast Cell disease and MTHFR now.

I did try L-Carnitine as a package of supplements about 9 years ago but didn't get any improvement. I'm desperate to feel even a little bit better but am hoping to get more of a diagnosis before I start self treating. It's very tempting though.

The histamine aspect of mast cell disease is of particular interest as it explains some of the weird things I get.

Research is taking me ages because of the brain fog but I'll get there! Happy to have advice.

[Angelsway in reply to Julienew]

They done a food allergy test. And believe it or not. It was just fine as well. Everyone is allergic to something.

[Jenny1410]

Just been to doctors and wouldn't help me she said wait till my review with cancer doctors in October and see what he said really love it when no one takes any notice of me I some times think what's the point I thought I'd gotten over it but I guess it will always be there

[Ruby1 in reply to Jenny1410]

Hi Jenny 1410. I thought for a minute you were the original poster. I think you will get a better response if you start your own thread. It sounds like your health issues are complex and people can help you more individually there. Best of luck

[Ruby1]

Hi Angelsway. Sounds like you are having an awful time of it. Are you hypothyroid? What exactly do you mean when you say 'pay for it' - do you mean the food goes straight through you and you have to rush to the loo? Burning up - you mean you feel really hot? Do you have a temperature or is this a sensation? Sorry if I'm being a bit dim. It definitely sounds that something is not right if you have gastro issues, are fainting and losing weight Hope you get it sorted soon.

[Angelsway in reply to Ruby1]

Back three years ago. I had surgery. It was to to fix a large hernia that I had. This was the second time this was done. They also, moved the stomach out of the chest cavity wall. They done other things like remove gallbladder and put a band in me so food would not come back up in my throat. Since then I have not been doing well. After that minor surgery. I weighed 150 lbs. I was overweight for my height. At that time. I was 5'1 now with osteo I am 5' within a year I even lost an inch in height. I have been gaining weight now a little. After the last surgery in 3-4 months I went from 150 - 99 lbs and hit in the 88lbs. I also, have COPD. Not fun. It could always be worse.

Oh, how I lost this weight so rapidly. Vomiting every day, night and running to to loo or bathroom. Sometimes wasn't even able to make it. Now I am on a powder drink for the called cholestyramine.. Sorry this was rambling. Thank you, for your time

[HLAB35 in reply to Angelsway]

Without this extra info, I felt that there was a small, but significant chance of it being an adrenal crisis, which is a medical emergency, so I panicked! Glad you're ok

Just to be sure, you should get a broad spectrum of antibody tests done if you haven't had them done already.The symptoms and diagnoses you've mentioned are secondary to undiagnosed, underlying issues, so blood results will give forum members a chance to make some suggestions. Also, see a doctor to check your bp and heart rate and for them to physically see you for external physical symptoms, and don't take anything for granted. For example, an older person can go deaf due to untreated underactive thyroid and just assume 'it's their age' and fail to mention it to their doctor.

Whatever road you take on your journey to recovery I recommend slowly, but surely investigating to find out the primary causes and making small adjustments to diet, medication and lifestyle to test what works.

[Ruby1 in reply to Angelsway]

Not rambling at all. People need to know the details so they can help you. It sounds like you have been having a tough time of it. I've not heard of such procedures as moving your stomach or having a band to stop reflux - presumably all to do with the hernia. It certainly sounds complicated and such a weight loss must also ring alarm bells for the doctors.

I'm afraid I can't offer much help, but I really wish you luck in getting your problems sorted.

[HLAB35]

Hi Angelsway, Bit worried that you've not replied to anyone's posts yet.. Please tell us that you're safe.

I expect that your symptoms have reached a critical point and if your GP's aren't doing anything about it (shame on them) then calling an out-of-hours service or a helpline may be required just to get seen. I'm not convinced this is just a thyroid thing and have just done some research... I think you should get checked out for adrenal crisis asap.. and by that, I mean today..

nhs.uk/Conditions/Addisons-...

[Angelsway in reply to HLAB35]

I am ok here. I keep on going. I had blood tests run. But with work haven't been into check with my doctor. I just figured that if something showed up. He would have had his nurse call me. I am going to be making an appointment soon. God bless you and thank you for your your concerns.

[Eddie83]

I assume you are implying that eating is causing regurgitation or diarrhea. It could be something like ulcers. However, it could certainly be a food intolerance, and that is what brought me down.

But if you have Graves, that would certainly be a major factor also. Do you have any test results showing TSH/FT3/FT4? Did the doc diagnose you with Graves via a TSI test? If so, what does your TSI antibody test look like? Graves is serious stuff; the doc should have put you onto a thyroid inhibitor as a first step.

[HLAB35 in reply to Eddie83]

I also assumed it was hyperthyroid / food intolerances at first as that's what a lot of us have been through, but as overactive thyroid usually gets picked up by bloods I'm not so sure now. I've looked up Addison's Disease and I'm beginning to think that the op is hypo with Addison's. This is far more likely to get missed on a blood test. Either way, Graves or Addison's require urgent attention!

[Angelsway in reply to HLAB35]

Going to get a copy of my tests results tomorrow. So I can share.

[HLAB35 in reply to Angelsway]

Thanks for getting back to the forum. I was getting worried. I'm guessing that you have low b.p. and glucose levels. It'd be worth keeping yourself hydrated, not with straight water, but with diluted rehydration mix as you've clearly been losing a lot of fluids and salts.

[Angelsway in reply to Eddie83]

I will be finding out about my tests tomorrow. I had them a month ago. I just figured if anything would have shown up. They would have called.

[elaine2447 in reply to Angelsway]

Don't bank on it. If they are anything like my GP surgery, they would forget or not bother. Feel so sorry for you. I have similar symptoms but nothing as severe as yours, for example osteoporosis and lost two inches in height, oesophagitis and the heart palps, insomnia, nausea, pain, etc. I see you still have to work which is even worse, at least I am retired now. It's a bummer, I spent the last 32 years coping well as I thought with stress, being a single parent, my mother's accident, parents and the dreadful nursing homes (too long to go into but suffice to say could do a Panorama documentary on them!!) and my dad died last year. My friend said you will now get your life back, no such thing all the ailments are gradually manifesting themselves. I hope you get some answers.

[Eddie83 in reply to Angelsway]

Don't assume they will call. Healthcare in both the USA and UK is broken in many ways. Assuming your doc even ran the right tests, you must be proactive by demanding copies of all your test results, and asking other patients about them on boards like this one.

[Eddie83]

I had a low-adrenal syndrome (not full-blown Addison's) while I was hypo. It was causing various symptoms such as anxiety, hot flushes, anger spikes. It took at LONG time to get over it. In addition to correcting my hypothyroid, I have had to use a lot of supplements. One of the most important supplements I use is free amino acids, which normalize neurotransmitter levels in someone like me who has had gut damage from gluten.

[bones-bones]

Could you be caeliac ?

[Angelsway in reply to bones-bones]

Back a year ago they did test me for that and said I was fine.

[Eddie83 in reply to Angelsway]

Did they use a TTG test, Gliadan Antibody test, or something else?

[Angelsway in reply to Eddie83]

It must have been something else? Matter of fact I am off work tomorrow. I think? I am calling the nurse in the morning and will ask for a print out of my tests results.

[Angelsway]

I never eat red meat. I only eat turkey breast and chicken breast baked not fried.