Hello everyone. I'm a 19 year old male. Not too long ago my blood test showed RF latex test > 450, which I have read indicates advanced disease. I've read a bit about rheumatoid arthritis and diseases associated with rheumatoid factor, but none, I think, match how I'm feeling. I don't think I have RA, as I don't really complain of joint pain. IgM was also 2.8, slightly elevated. What's going on? What disease could cause this? Celiac disease blood tests were negative and the doctor think celiac is unlikely. I was referred to a gastrologist and now have to wait months for the appointment while suffering from:
- Fatigue
- Daytime sleepiness
- Memory issues
- Concentration issues
- Never feeling awake, can't think straight (brain fog)
- General muscle aches and weakness
- Excessive flatulence (near constant!)
- Changes in bowel movement (bowel movement every other three days, or once each day but incomplete, much straining. Stools are very fatty / shiny and hard to flush)
- Moderate numbness and tingling in hands and feet that I feel all the time.
- Difficulty swallowing (mucus stuck in throat, food getting stuck in throat, need water to flush down. I do have acid reflux, but am being treated with pantoprazol.
- Loss of appetite. I only eat because I know I have to. I eat quite alot, but don't really feel like eating.
Main bothersome symptomes are: Fatigue, daytime sleepiness and flatulence, because I've had them for about 5 years, and these symptoms are getting worse each year.
I've had TSH, T4, T3 and anti-TPO tested (with TSH tested at least 5 times ansd T3 and T4 at least three times) All results were normal and within good range. Thyroid diseases are really common in my family, my mother has hyperthyroidism, my twin brother has hyperthyroidism, my dad I believe had a goitre and I believe my grandmother did too. My question is: Do my symptoms sound like a thyroid issue? And is it possible to have it for this long and it not showing up on any blood tests? Or is it too unlikely?
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WK1010
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Hmmm. OK I'm thinking aloud. Gastro issues the presenting symptoms here. There are two thyroid antibodies... only one tested. Is your hyper twin identical? Your B12 reading was what, with ranges?
I am quite sure that you are right, something is wrong and it may well be thyroid linked. Though not necessarily thyroid yet. Ferritin levels what, with ranges? Do you have psychiatric symptoms, depression, anxiety?
You sound as though you are not absorbing key nutrients.
You could do a trial of gluten free, 8 weeks or longer, strict. You could be g sensitive even if not celiac. And your vit D was what, with ranges? And h pylori ruled out???
B12 levels have been tested several times and are normal and within good range. Vitamin and minerals are all normal, except for vitamin D which was borderline low. However, I have been taking supplements and vitamin D is now within good range. Ferritin levels have been measured repeatedly and are also within good range. Considering the fatty stools, I'm probably not absorbing fats very well. I have mild social anxiety, and have actually had other mental disorders ruled out by a psychiatrist. However, the tiredness and fatigue tend to give me depressive episodes, especially when these symptoms prevent me from doing something important. Twin is fraternal, not identical. I should not go off gluten as I might have an endoscopy. If I went off gluten and it was really the cause, then everything would appear normal on the endoscopy because I've been off it. H.pylori has been ruled out (twice I believe). I have recently developed cold sensitivity . I don't know if it's because it's winter here, but I don't remember being this way before: My hands and feet are like ice. I've read that fat malabsorption could cause cold hans and feet, but possible hypothyroidism could also, so I'm not sure.
[quote]I've had TSH, T4, T3 and anti-TPO tested (with TSH tested at least 5 times ansd T3 and T4 at least three times) All results were normal and within good range. [/quote]
Do you happen to have those results and the ranges? What doctors describe as "normal" can mean otherwise. If you can give us that information it will give some more clues.
Have you tried excluding foods until the flatulence improves? Lactose intolerance can cause that, as can other food intolerances.
I had a lot of the problems you have when I was 19, though not as severe, but my TSH was 3.5 so my GP did nothing. Only now that I'm 29 is my thyroid out of range and my problems gotten worse.
My gut problems could be the cause of it all, the NHS can do a lactose breath test for lactose intolerance and a glucose breath test for bacterial overgrowth, that's what my gastroenterologist did.
My best guess is I have some kind of lingering infection of the gut, I am going to try some antibiotics in a couple months time.
I have lactose intolerance but I really have been lactose free, so I don't understand why the issue is persisting. I'm sorry about your thyroid issues. I could have bacterial overgrowth as well, I'm not sure. If you have bacterial overgrowth it's very important to find our WHAT is causing it, otherwise it will probably return when you stop the antibiotics (that's what I've read at least). What infection do you think could cause this? Maybe I have the same thing?
My glucose breath test came back normal so the NHS wouldn't investigate any further. I'm not sure which bacterial infections can evade the glucose test, I was looking at something called Yersinia but the antibody test is expensive and I would prefer to just try the antibiotics.
I did get my GP to prescribe metronidazole but he would only do it for 7 days. On the 6th day, I had a huge improvement in my symptoms but when I finished the course the problems gradually came back.
I'm now looking to try Rifaximin and Neomycin once and then I'll know for certain if my problems are bacterial.
You could also have histamine intolerance. I unknowingly ate/drank a load of histamine foods one Christmas, I developed mouth ulcers and skin rashes which took months to settle down. I also can't eat potatoes for some reason, it has the same effect as lactose.
I guess the enzymes in my gut are depleted for some reason, I know some people develop intolerances after a stomach bug so that's my theory for now until I try the antibiotics.
Your results are quite confusing as your levels are going up and down. The last one though where tsh is 3.1 that is def raised a lot more than previously. The range only goes up to 4 also.
I think it's normal for hormones to fluctuate a lot. TSH is highest on the last test, but it could very well go down again on another one, as it has gone up and done on the others.
Yes but for it to go that high I wouldn't class that as normal unless you were Ill at the time the test was taken. Mine fluctuates but always remains under 1. But I would test again say in a good few months and see what it says then.
in reply to
were these tests taken at different times of the day?
Yes, TSH varies through the day. It is highest in the early am, then lowers as the day progresses, so the variation here may be a variation in time of test.
Very experienced members here often say that symptoms of hypot can precede the bloodwork by years... this is From anecdotal experience I think. Your bloodwork does not show hypot, but you may develop the signs in years to come.
Please could you add a post if you work this out. I take it your B12 is c 500? Your ferritin 80 or over?
Even if the circumstances were a bit different, it wouldn't have a significant affect. One of the several doctors I've seen would have mentioned it. Why are you asking about ferritin and B12? Latest ferritin test is 123, B12 (next to latest) is 441 pmol/L.
Ok, I'll try to remember adding a new post when I find out what's going on. Other people might also find it interesting. Is there a way I can tag you?
I didn't mean to be rude or anything, if I came off that way please forgive me. I was just saying that it's extremely unlikely that:
1) fasting is going to have an effect worth noting
2) An hours or two difference is going to have an affect when all tests where at daytime
3) That after mentioning my family history of thyroid issues to all 4 doctors, that none of them would even mention a strict time on taking the tests and any differences, knowing my history and my symptoms.
I do question doctors, but only when I think it's right to do so. In this case, logically it really doesn't make sense to question. I do agree with you though, I could develop thyroid issues later on. But indicating that none of the tests are reliable is very far fetched. Again, my intention is never to be rude. I have the right to state my opinion
WK1010 hi there I don't have the flatulance but I do have the constipation often straining,sometimes going days without movement also chronic tiredness sleeping a lot.waking up in morning and still feeling tired and having a kip on afternoon.Also no energy no go in me being cold all the time.Pins and needles in arms and numbness Weekness in left arm no strength in it which I still suffer from to this day.This went on for years I now suffer with depression and fibro ? Can't remember the rest of it.its chronic pain all over body pain in muscles etc.Kepted going to doctors over the years having blood tests done also thyroid to be told it was all normal.Well I didn't feel normal far from it.To cut a long story short I as a good talk with doctor told her how I feel she did me full blood test thyroid test.i made appointment to see doc 5days later a double appointment she told me I was sunclinicle I told her thyroid runs in the family me mom and also 2sisters have underactive thyroid she put me on thyroid tablets straight away after I begged her to.somtimes I feel good other not to good.
B12 isn't the issue. I don't know about the thyroid. I'd like to mention again that my hands and feet are ice cold and family members complain because of this, if I touch them. My mother says she freezes whenever when I put my hands on her, for example. Lately I seem to be getting random cuts everywhere without feeling it. I've been puttig on bandages several times this last month, mostly on my hands and feet. I don't know if that says anything, but I found it strange and worth a mention because it's new to me.
It is easier for members to assist you if you put your actual results, with the ranges. Labs differ and also when GP's and Endo's tell you your results are fine, they may not be optimal.
I found the latest results (9.01.2017) for vitamins. B12 is 250, range is 170 - 650 pmol/L, which is strange as about 6 months earlier (30.07.16) it was 441 pmol / L with the same reference range (170 - 650). 6 months ago Ferritin was 121 (range 20 - 300 ug/L), latest test results show 123 ug/L as the value. 6 months ago vitamin D was 50 (range 50 - 150 nmol/L) it was low and I have tried to take 20 microgram supplement daily. Latest test result show that taking supplement (along with fishoil containing 10 microgram D3, although I have not been good at taking the oil everyday) has had en effect, raising the value to 74, although I admit it could be higher. Folate was >45.0 (range >5.7 nmol/L). This is the second to latest result I have of folate (19.04.2016). The latest (30.07.2016) show a value of 17.1, with same range (>5.7). This is the first time I notice there clearly has been a significant decrease in B12 (about half) in the past six months, and a big decrease in in folate in a matter of three months. I am eating normally, so what gives?
To those interested: I've been through much these past months. Colonoscopy with biopsy was normal, so that pretty much rules out any malabsorption / IBD. The GI doctor thinks it's IBS, and he might be on to something. The other doctor, the one who is assisting me in finding a cause for my symptoms, has concluded that rheumatic diseases are ruled out, cancer is ruled out, and many other more serious diseases are pretty much out of the picture. The doctor reassured me that the blood tests show my body is reacting to something and that this is real, but it's difficult because one can't yet pinpoint the exact cause. He told me to strictly eliminate all milk and wheat from my diet for about 2 months and see if I feel better, as my symptoms (particularly the gastrointestinal symptoms) seem very likely linked with the food I eat. I agree with this. I also had (again) an allergy test done, but this one covers a broader range of food allergens than before. So my plan is to start eliminating foods and wait for the blood test. The doctor said that even if the allergy tests are negative, it doesn't mean much, as one can still have a reaction even if the blood test doesn't pick it up. I'll return to the doctor in two months and control the RF value. If it hasn't been lowered / I don't feel better by then, that means my doctor and I have to keep looking for a disease...
Recent blood test showed further elevation of IgM from 2.8 to 3.1. T3 has been elevated from 5.9 to 6.5 which is the upper limit, but TSH and T4 are normal? Any advice here? The receptionist said this upper limit value of T3 doesn't mean anything because T4 and TSH are normal.
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