normal CRP/ESR yet raised Calprotectin

[Jimbo1968]

I'm sitting here looking through my stool and blood test results and something just doesn't make sense. My faecal Calprotectin is high (I've mentioned this on a previous post) ok so I have abdominal inflamation, so why then are the two inflammatory blood markers CRP & ESR (erythrocyte sedimentation rate / C-reactive protein) both completely normal. Surely it would show up in the blood too. Am I missing something here , or are others in the same boat??? I know this is somewhat technical but I thought I'd try it as people on this sight have been very knowledgeable on many other issues

[Gabes-Apg]

Jim,
At various stages where I was having MC issues, and CRp/ESR was tested, it always came up as normal, no inflammation.

I don't recall I have ever had faecal Calprotectin test to do comparison.

All part of the uniqueness of MC and why it is hard to Diagnose and get support from doctors. If it doesn't show up in a blood test, then it doesn't exist...

[Jimbo1968]

That statement I think sums up the problem I've got getting to see a gastroentorologist. They have a look through my blood tests results and that's enough to convince them I'm not a matter of urgency. I'm getting a bit cheesed off waiting. Based on my blood tests etc I've been given a mid January appointment just to see a G.I.

[HappyBird]

That statement I think sums up the problem I've got getting to see a gastroentorologist. They have a look through my blood tests results and that's enough to convince them I'm not a matter of urgency. I'm getting a bit cheesed off waiting. Based on my blood tests etc I've been given a mid January appointment just to see a G.I.

Hello Jimbo............

My sympathies with you all the way on this issue.........

There seems to be a ridiculous system in place for prioritising patients in the NHS system. Could you not phone the GI department and ask for an appointment sooner. You should contact your local PCT and tell them you need a more urgent appointment.

All NHS departments, including GI, have the facility to give patients an more urgent appointment, they reserve a place once a day for emergencies. Some days those places are not used. Believe me, they can fit you in - just ask.

You know how things work Jimbo, everyone oils that squeaking door first, become a squeaking door. Phone the department and ask for a cancellation, phone them often. You deserve to be seen soonest - you have a medical problem tell them how bad you feel and you need to be seen before your condition becomes worse.
Jen

[tex]

Jim,

My experience was similar to Gabes' experience — on the few occasions when my ESR was elevated, it was probably due to something other than MC. And my CRP was never tested when my symptoms were active. When tested, my CRP was normal. Back when I originally had all the tests at the clinic (15 years ago), the calprotectin test didn't exist.

Tex

[Jimbo1968]

Thank you all for your feedback. Jen I've tried to make I fuss at my Dr but I'm obviously no good at that either! I'm at a bit of a loss as my Dr and the G.I she has spoken too are just dismissive, but they aren't the ones who are scared of what they eat incase it produces a volcanic reaction. I'm back tomorrow to my GP for another go.
I don't know how they feel they can tell so much from blood tests and stools samples.

[DebE13]

My bloodwork came back and the Creatine Kinase and CBC with Auto Diff tests came back normal. My ferritin is at 25 which is better than the 13 earlier this year. I cannot take the full dose 3x a day because of my thyroid meds and tolerance issues so I will keep at it knowing it is slowly on the rise. I am not anemic. My PCP messaged me and said my ANA was slightly elevated which gave me the impression it wasn't that big of a deal. It seems as it's a test which is up for interpretation. I prefer black and white answers and expecting the impossible. The results read positive 1:80 speckled.

It seems this test along with some of my other symptoms may qualify me for a lupus dx.

I am still boggled that I did not pick up on the rash being related to sun exposure. It seems so glaringly obvious.

Now I wait for a call from the rheumatology office to set up an appointment. I called, hoping I could get in soon (was told it can take a long time to get in) but was told nothing can be scheduled until the notes are reviewed and the referral is accepted. The Idea of tolerating this pain for who knows how much longer has put me in a foul mood. I forgot how impatient I am and how many noises I make when moving around. Most likely, there will be more tests and more frustration. I want to talk about the LDN and hopefully find some relief.

I am dropping my husband and his brother of at the airport tomorrow morning for a flight to Florida to visit his family. I'm trying to avoid my own holiday melt down because it really sucks that traveling is out of the question for me right now because I am simply too tired and hurt all the time. Here I thought that my food issues would be my problem if we took a trip and now it seems that finding safe foods would be a breeze if I could loose all the rest of these aches and pains.

There.... Now my boohooing is over.

I read that the T4 meds can cause aches and pains..... It wouldn't be likely for that to me the cause could it? It's been over two years since my TT so if that were the case, it should have showed up earlier.? I don't take the name brand Synthroid.

[tex]

Hi Deb,

Actually, it's a deficiency of T3 that causes aches and pains, isn't it? Because aches and pains are symptoms of undertreated hypothyroidism, and the cells of the body only respond to T3 (for all practical purposes).

Have you seen this article?

New Study Reveals Why 1 in 6 Hypothyroid Patients Still Feels Bad on Levothyroxine

Here's an article about the connection between thyroid disease, SLE, and RA.

Thyroid disease in systemic lupus erythematosus and rheumatoid arthritis

And here's an article on the thyroid, fibromyalgia, and SLE connection:

The Thyroid, Fibromyalgia and Lupus connection

And here's why I have a hunch that your SLE symptoms may be due to undertreated (or improperly treated) hypothyroidism:

CONCLUSION: Our patients with SLE had a high prevalence of symptomatic and significantly more subclinical hypothyroidism and positive thyroid autoantibodies. Thyroid autoantibodies may precede the appearance of clinical autoimmune disease. Sjögren syndrome and positive rheumatoid factors were more frequently observed in SLE patients with autoimmune thyroid disease. We believe that, since symptoms of SLE and thyroid disease can be similar, that SLE patients should routinely been investigated for autoimmune thyroid disease.

Prevalence of thyroid dysfunction in systemic lupus erythematosus.

Symptoms tend to become progressively worse over time because chronically undertreated hypothyroidism can sort of feed on itself as additional organs and body systems become affected by the inadequate availability of T3. Everything happens for a reason. SLE doesn't just accidentally develop because we have the genes that predispose to it. Environmental influences have to create the right environment to trigger those genes. And undertreated hypothyroidism has been shown to cause all sorts of AI issues.

Of course that's just my unprofessional opinion.

Tex

[DebE13]

Thanks for all the links Tex. I appreciate the time and effort you put into educating us.

There's a lot of information there and to put it simply- it infuriates me that I seem to be caught on a circus ride and cannot get off. I was so happy that I finally got the liothyronine 2x day this summer and was hoping things would turn around. My labs in October showed myFT3 to be at 2.8 pg/m (low 2.3 pg/mL and high 4.2 pg/mL) That is only slightly up from 2.2 in March. I was hoping to get it closer to 4 since I've read so many comments from like-people that the difference is night and day. It would literally be a cold day in hell before my endo would consider upping my dose. It still chaps my ass that I don't have the option of NDT.

I had the ESR-H Test done which was normal. I'm not sure how this whole situation is going to work itself out but I know I can't keep hobbling around feeling like I'm a hundred years old. They are going to have to give me something..... How will this get better if the cause is undertreatment of thyroid?

Is asking for LDN my first step or asking about my thyroid treatment? Although, that wont work because it would just be another referral back to my endo who will insist it's not related and refer me back to rheumatology.

I do appreciate your thoughts on the subject. At least I have a better understanding of how it all relates.

As I sit here I have one hand that just totally turned ice cold. Just the fingers and hand, that's it. It is such an odd sensation. It's too bad the fire under my *ss caused by my anger towards the whole situation isn't enough to at least keep me warm.

[tex]

How will this get better if the cause is undertreatment of thyroid?

They will treat the symptoms (as always), rather than to track down and treat the real problem.

What bothers me the most about your endo's attitude is the fact that he obviously believes that synthetic T4 is an adequate replacement for hormones that would normally come from the thyroid. The fact of the matter is (as you are probably well aware) that a normal thyroid gland produces about 80 % T4 and 20 % T3. And of course T3 has roughly four times the hormone effectiveness of T4. If you look at the math, at 4 times the effectiveness, that 20 % share means that it actually has a 50 % stake in the work done by the thyroid hormones (IOW, 20 % x 4 = 80 % of the total supply of "effective" hormone). That makes T3 equal to T4 as far as functional effects are concerned.

It seems absurd to replace only half of the hormone requirements of the body and expect the body to handle the shortfall by converting more T4 to T3 than would be the case with a normally-functioning thyroid. What is the point of imposing that handicap? Life is tough enough already, without a thyroid gland. You don't need any additional handicaps in the game of life.

But the thyroid also produces T1, T2, and calcitonin. Doctors have been unable to figure out what T1 and T2 actually do, so they just ignore them. Calcitonin works in combination with parathyroid hormone (PTH) to regulate calcium in the blood. It is known that low calcitonin can be a result of hypothyroidism. But NDT typically contains T1, T2, T3, T4, and calcitonin.

And yet most endos are too ignorant (I'd rather say stupid, but that sounds so ugly) to recognize the value of NDT. Rather than to make their own determinations based on facts, they would rather just accept the hogwash promoted by the pharmaceutical industry, so they assume that synthetic T4 is an effective substitute for natural T1, T2, T3, T4, and calcitnoin. It most definitely is not, of course. But similar to T1 and T2, medical "experts" have not been able to determine that a calcitonin deficiency has any adverse effects on health, so they ignore the fact that it is missing in synthetic thyroid supplements.

I beg to differ though, and I maintain that it does have an effect on health. The primary functions of calcitonin appear to be preventing calcium release from bones and encouraging calcium to be filtered by the kidneys. Osteoclasts are cells in the bones that break down bone tissue in order to release calcium back into the bloodstream. This is a normal function that is triggered when the blood level of calcium drops too low, and of course the ultimate effect can be osteoporosis if this happens regularly, and bone resorption outpaces new bone formation (ossification).

But resorption of bone to release calcium is not always a normal function. Note that osteoclasts are also involved in the tissue destruction commonly found in psoriatic arthritis and other disorders associated with rheumatoid arthritis. But in the presence of calcitonin, osteoclasts separate from the bone and stop releasing calcium into the blood. This decreases the blood calcium level, and also reduces the progression of osteoporosis. So how can they say that a calcitonin deficiency has no effect on health?

In my strictly unprofessional opinion, your loss of calcitonin may be part of the reason why you are experiencing increasing aches and pains that could be due to unregulated osteoclast action (bone resorption).

Every cell in the body depends upon thyroid hormones for regulation of their metabolism. Your cold hand and fingers are clear signs that metabolism is not being properly regulated in your body. I could certainly be wrong (and I hope that I am), but it appears to me that your biggest obstacle affecting your overall health and quality of life may be your endo (or the protocols followed by the endocrinology branch of medicine in general).

Tex