Normal CBC, TSH, multiple painful lymph nodes, neck, legs, arms increasing in size

[fritochip]

2 years ago, I first brought to the attention of my GP painful lumps mainly in my legs. He didn't examine them (early covid days) but said they were probably lipomas given I already have some at my ankles. At another visit, I insisted he look because the lumps felt different than lipomas and they were getting bigger and more painful. There were some in my arms at that point as well. He was not impressed but noted it in my chart.  
GP retired.

Two years later I've lost 12 pounds (10% of my body weight) without trying. Also have hot flashes and night sweats but I'm 53 y/o female and perimenopausal so chalked that up to hormonal changes.

However, in the past month I noticed pain when swallowing. My neck has some tender areas and slight swelling. I'm not sleeping well so I'm tired all the time. Sometimes I wake up sweating. Not much appetite lately. Often light-headed and irritable.

New GP examined the lumps and confirms they do not appear to be lipomas, but lymph nodes and ordered CBC & TSH labs. She also ordered CT of the thyroid since that seems inflamed and tender in some spots.

She said it is most likely infection or thyroiditis but considering weight loss, increased size of lymph nodes over time, etc, she said we need to rule out cancer.    

CBC was normal. TSH3/4 also normal.
With a normal blood work I would think that rules out infection, thyroid AND cancer, no?
Or is it possible cancer is still on the table?

CT of thyroid was done but waiting for follow up visit to get results.  

Specific areas where nodes are noticeably enlarged and painful are: behind knees running up back of thighs, inner elbows, neck. There are a few areas of increased skin pigmentation that have appeared over the past few years (face, arm, forehead). There appears to be another swollen area (not sure if it is a lymph node) in my abdomen and I've experienced some constipation.

Just 2 months ago I had terrible abdominal cramps, pain, some bleeding. GI doctor suggested diverticulitis although I never had that before. He rx'd antibiotics and a colitis diet of brown rice/potatoes, etc and it seemed to resolve in a few weeks. My typical diet is relatively healthy (mainly organic or home grown vegetables, very little packaged or restaurant food, occasional non-caffeinated soda).  

In the past month my ortho rx'd a course of prednisone for pre-existing back pain (failed SI fusion, waiting for treatment plan and possible revision surgery). That did not happen to affect any of the lymph nodes and although in the past steroids have provided relief from back pain/inflammation, this time they only seemed mildly helpful for a day and a half.  

There are other painful lumps forming in my legs which do not seem to correspond directly to the lymph nodes, mainly in my calves and thighs. It's terribly painful mostly at night. I can't feel the definitive outline of these as I can the obvious lymph nodes but if pressing hard enough I can feel the lump.


Confused since the lab results seem normal but symptoms are getting progressively worse.
WBC 9.3, RBC 4.67, Hemoglobin 14.1
Platelet count 425, platelet volume 10.6
Neutrophils 6.3/ 67.8%, Lymphocytes 2.2 / 24%, Monocytes 0.5/ 5%,
Eos 0.2/ 1.8%, Basophils 0.1/ 1.2%, Immature granulocytes 0.02/ 0.2%
TSH 0.53   T3 3.82    T4 1.17

For reference, 2019 TSH w/Rflx FT4 was 1.9 (don't know if this is helpful or not)

In 2019 my AST/SGOT was low: 8. This has not been rechecked since (yet, anyway).
In 2020, ANA was normal, CRP 3
I know, these old numbers are pretty useless without updated tests.

Any insight appreciated.

(NOTE: I have multiple herniated and bulging discs. Failed SI fusion. Spinal cord stimulator implant in place since 2018 in case it's relevant)

[Ken_PA]

Weight loss from advanced cancer (cachexia) is when the body is deconstructing itself. That is very different than when a person isn't getting sufficient calories, usually from GI distress -- or they might not be absorbing the calories efficiently.

[Ken_PA]

Leg nodes: are you walking around outdoors without shoes?

[fritochip]

No. But living in the country near swamps. Often get sand/dirt on my feet. No sidewalk or driveway. Just gravel and native soil which is dirt/sand.

[Ken_PA]

Menopause? That doc might be right, though they probably have no idea "why" they are right :)

Women are 3-4 times more likely to have immune problems than men. Yet it's not unusual to have long standing immune dysfunction get better during pregnancy.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6501433/
"Autoimmune Disease in Women: Endocrine Transition and Risk Across the Lifespan"  2019

But note that they don't mention mast cell disorders (auto inflammatory) there, because of the fixation with autoimmune conditions.

----------------------------------

So let's go off the beaten path of PubMed and look elsewhere for info about MCs. A lot of naturopaths are flaky, but this one doesn't seem to be:
https://mastcell360.com/estrogen-dominance/
"...did you start to notice an increase in symptoms once you started going through menopause?
That increase in mast cell activity could be the result of estrogen dominance."

She has Mast Cell Activation Syndrome (MCAS) herself. Sources like her MIGHT have valuable thoughts that can help you. In the end, though, you have to be your own Sherlock Holmes.

Btw, are you aware of low histamine diets? Your adhesions might have been spurred by general abdominal/intestinal inflammation. MCs make histamine.

From her 'About' page: "After decades of seeing traditional health care practitioners, I felt like I was at the end of my rope. The medications often made me worse. Being given the wrong supplements didn’t help either. " Sound familiar? That is very very common with people who have immune dysfunction. You'll find that all over.

However, I don't see that you need expensive genetic testing at all. Do you need stress reduction? Of course, but that's harder for you than most to achieve because of circumstances. But then, you seem tougher and more resilient than most.

[fritochip]

"Continuing down the road of inflammation  allergic reactions, "
While pregnant in the 1980s I was prescribed compazine for severe morning sickness. After a couple days I had a dystonic reaction that required a trip to the ER and IV benadryl. Quite an ordeal. The morning sickness was all day, every day for months. I was hospitalized for dehydration several times until month 5. I'd never had any movement type of issues before the compazine incident but since then developed RLS.  

DIET / Inflammation diet
In 2018 I started from zero when recovering from sepsis so I went from strictly clear fluids and IV at the hospital to adding one thing at a time. If I run into trouble or go too fast I switch to elimination diet to see what seemed to be the trigger. I have a core group of items that I stick to that seem to agree with me. I haven't been able to find a reliable source for inflammatory foods though. Most websites are trying to sell something or give conflicting information.  

Sometimes, due to circumstances, I don't have much of a choice in what I eat. I rely on charity for groceries so there if I have flour tortillas and english muffins, I just don't eat too much at one time.  Basically I avoid dairy and tomatoes and cut out all high fructose corn syrup, caffeine, food in boxes unless there is no alternative, etc.

ALT Practitioners
I looked into naturopaths and functional medicine but the prices are currently beyond my budget. I understand what you mean about the dr, (let's call him attending dr nbr 2) but it is frustrating how they get distracted by squirrels (menopause) or just want to throw pills at me. I have been worked up by neurologists, psychiatrists and psychologists and given every SSRI, SNRI there is as well as other mood regulators for migraines and later for the back pain with usually terrible results.  As for psych Dx, it has consistently been anxiety and depression tied to the unrelenting pain and my life being turned upside down.

RX
I took the cymbalta even though I didn't want to. I tried to keep a positive outlook hoping that it might not have negative effects but after a few days, RLS reared its ugly head. I was not been able to stay awake for more than a couple hours at a time and when I was awake I had to constantly kick my legs. It has been absolutely miserable. More than usual. None of the other symptoms changed.

Attending dr nbr 1 (the one who isn't distracted by squirrels) agreed to discontinue cymbalta. After stopping cymbalta the RLS calmed down and I can stay awake - actually I am back to not being able to sleep much. The night sweats  are still a thing.

The nodes are still swollen (neck, arms, groin, legs, both sides and possibly one center of abdomen above navel) and I have pain and soft swelling in my calves and thighs. It's a burning, tearing pain mostly at night but sometimes during the day. It is scary.

There is still chest pain radiating from the center from time to time. If I forgot to mention, ECG was normal (although one line was out of whack the resident said it was probably because of how the leads were connected). She thought the chest pain might be pericarditis from sep 2021 covid infection. However, this chest pain seems to be a similar caliber and character as the pain in my legs and groin.

The groin pain started a few months ago. It radiates in 2 or 3 lines in the exact same pattern each time from my mid inner thigh up to my saddle region/pubic bone area just line the chest pain radiates in the same pattern from the center outward.  

What it feels like to me - for what it's worth - is that my lymph nodes or whatever is growing are increasing in size, perhaps with waxing/waning inflammation which from time to time applies pressure more or less on nerves causing radiating pain.

Whether related or unrelated, there are pockets, like bursitis that seem to be getting larger and increasing in number in my legs as well. Maybe since my lymph nodes are still at the same size or larger, for whatever reason things are not draining properly so fluid does not know where to go and just piles into various pockets.  

I once gained a lot of weight in a short period of time from one prescription or another and I could feel my skin tearing as stretch marks were forming. The pain in my calves and thighs that occurs at night (burning, tearing) feels of similar character to that but without the stretch marks and without the weight gain.

The various lumps that seem to be adding to my legs seem like softer and larger lumps than the those along the path of the lymph nodes. They seem almost like they are filled with fluid or gel, not characteristic of adipose tissue anyhow. Attending dr nbr 1 and resident dr examined these and their opinions are these are not lipomas.  

Also I'm down another pound despite making an effort to eat more.

So I went back to see Attending nbr 1 and resident dr and they are sending me for a biopsy tomorrow of one of the nodes in my leg. I do not know if it will be a needle biopsy or if they are taking one of them out or what.

You asked about shape/ size of the nodes.... so far most are pea to marble sized. The ones which are causing me grief are 2 behind my left knee that are marble sized, round to semi oval, semi firm. One is close to the surface and one is rather deep and very painful as it is close to my sciatic nerve. When I touch either one, the bottom of my left foot feels pressure and heat as well as additional buzzing/ tingling. My left foot always tingles and has a buzzing/tight feeling.



Sorry for the delay. I hope any of these ramblings are interesting/ useful.

[Ken_PA]

The next step is to know what to do about all this. For that to be pursued, you have to be convinced that we're on the right track. Hopefully, you're thinking, "how the heck did he know to ask about skin flushing?"  :)

You have a Mast Cell Disorder. There are two types of that. Mastocytosis and Mast Cell Activation Syndrome (MCAS, which is much more common). We can zero in on which.

For now, have you tried histamine blockers? There are two types of OTC meds: H1 blockers are like Benadryl/diphenhydramine. H2 blockers are thought of as antacids, like famotidine and ranitidine. Do you have experience with those? (Those are not the same as Pepcid, which is a wholly different type of med.)

A second class of useful, plant derived OTC meds are Mast Cell Stabilizers. Quercetin is probably the most known. They stop the MCs from going off too easily and too powerfully.

Lots of progress can be made. Let me know what you think so far.

[fritochip]

Funny you should mention this.... I buy diphenhydramine in bottles of 100 or more capsules and alternate with hydroxyzine merely because the latter is available from time to time free through a private prescription charity.  

Typically I use it for itching, rash, (post-allergy shot reaction, insect bite reactions which can be quite severe, or when I eat something unexpectedly reactive). For example, I ate chicken at a restaurant and my friend asked if I was feeling alright and in fact I felt flushed. My chest and neck were splotchy red. So, I asked the manager if they prepared the chicken where they also prepared fish, and they did. I am allergic to fish-with-fins. I had to take 2, 25mg benadryl to stop the reaction.  

When younger, I took both famotidine and ranitidine but experienced too much oral dryness and tooth decay and loss.  Perhaps not causal, but since discontinuing it seemed to slow the tooth decay.  I hadn't heard of Quercetin until recently and just acquired some. I will give that a try.  Luckily, Quercetin is in some of the foods growing just outside my door like onions and berries and I have been taking full advantage of that as often as possible.

[Ken_PA]

Can you use your fingernail to write on your sternum? Can you see lines? That's called dermographia. It happens because the mechanical pressure causes MCs to release histamine right there.

[fritochip]

This has happened but only occasionally. Under the right circumstances I can just brush against something and a line appears

[Ken_PA]

"Often get [swamp] sand/dirt on my feet."
That probably explains the nodes in the legs, which had been a mystery.