You my friend are describing the symptoms of Hyperparathyroidism and some other things. And as you already found "nodules" were they biopsied to identify if the tissue was from the Thyroid or the Parathyroid? Go to an Endocrinologist, one that is Board Certified, because some are clueless when it comes to PTH disease. Ask Dr to run the following labs AND INSIST! Do not let them turn u away or ignore your suffering or say lets watch it... no.. lets find out what it is and now.
Blood Tests Parathyroid:
PTH
CALCIUM
IONIZED CALCIUM
VITAMIN D
CALCITONIN
PHOSPHORUS
Blood tests kidney / water balance:
ALDOSTERONE
PLASMA RENIN
CMP - Complete Metabolic Profile
Blood tests Adrenal Function:
AM CORTISOL (do by 8am)
ACTH
Blood tests toxin type confusion:
MAGNESIUM
LACTIC ACID
AMMONIA
Blood test racey feeling fast heart rate:
PLASMA FREE CATECHOLEMINES
Blood tests Thyroid Function:
TSH
T3
T4
URINE TESTS Kidney & PTH Function:
24 HOUR CALCIUM
24 HR CREATININE
TO CHECK FOR PITUITARY ADENOMA:
- BLOOD PROLACTIN LEVEL
- BLOOD GROWTH HORMONE LEVEL
This is what Pituitary Tumors most commonly secrete. Sometimes if Prolactin is high, breast milk may leak from the nipple (man or women) if squeezed, and women may lose their monthly menstrual cycle.
GENERALLY ALL THE ANTERIOR PITUITARY HORMONES WILL BE LOW IN BLOOD IF YOU HAVE A PITUITARY TUMOR & THEN IT WILL SECRETE ONE OF A FEW THINGS, LIKE PROLACTIN BEING THE MOST COMMON.
IF THIS IS YOUR RESULT, THEN FOLLOW UP WITH:
MRI OF PITUITARY! NOT THE WHOLE BRAIN! IT NEEDS TO BE CLOSE AS ADENOMA ARE MEASURED IN MMs. AND IT MUST BE DONE ON A TESLA 3 STRENGTH MRI MACHINE OR IT MAY BE MISSED BECAAUSE THEY ARE SO SMALL.
YES IT IS A LOT OF LABS! AND POSSIBLE IMAGING, BUT YOU NEED THEM ALL TO GET A CLEAR PICTURE OF WHAT IS HAPPENING.
Endo type disorders involve positive and negative feedback systems, so you must test the complete pathway, not just half, so it involves lots of labs and Endo Drs. should be used to that.
You have symptoms of many Endocrine issues, but mostly sounding like that of Hyperparathyroidism,
& Possible Adrenal Insufficiency. These labs will also check your Thyroid function, water / electrolyte balance, Lactic Acidosis, some metabolites toxic to brain, mitochondria, etc. Catecholemines can check for a mostly benign usually very small tumor called a Pheochromocytoma that can cause some of your symptoms especially since you have already found some nodules. Lyme can cause Adrenal Insufficiency too. If your Catecholemines are two to four X the high value for your lab (do the PLASMA test NOT the urine, urine is not as useful and is an outdated test) then you need to do an I-131 MIBG SPECT SCAN or an F-Dopa Scan if JUST YOUR DOPAMINE IS HIGH. Otherwise do the other. AND IF A PHEOCHROMOCYTOMA IS FOUND GET A BLOOD TEST TO CHECK FOR MULTIPLE ENDOCRINE NEOPLASIA. There are four types, 1,2A, 2B & 4.
I have had experience with others having similar symptoms. They had / have chronic Lyme and have been thru all this testing.
Lyme or Malaria can cause Hemolytic Anemia too! The bacteria or parasite gets into the RBCs, so when your RX treatment or your immune system attacks the bacteria, the red blood cells are damaged, causing the anemia. If you want to make sure your fatigue is not from that, do blood tests:
COMPLETE BLOOD COUNT
IRON
TIBC
FERRITIN
Some people with difficult chronic Lyme have a genetic variance called MTHFR. It is an error of the Methylation process and interferes with the B vitamin pathway, which makes it difficult to clear toxins from the body.
To check for this do Blood Tests:
MTHFR
VITAMIN B12
FOLATE
For some, this seeking of a diagnosis has taken YEARS!
I am so sick of Drs. with no passion for medicine anymore that note things like "mental illness" in their patient because they have not educated themselves enough to figure out the "zebras". That is what they call that rare patient that comes thru their clinic doors once in their lifetime. I find it so lazy! And so maddening! What? Do they think this is fun?!?! NO!! Some are so weak and fatigued they have to prepare days ahead to get out of the house and take hours to bathe and dress with breaks in between tasks.
And then they ask patients.... Are you sure you have Lyme?!?! WHAAAT! Are they kidding??!!
Go to a LYME LITERATE INFECTIOUS DISEASE DR FOR LYME TX. and get IgG IgM Blood Test for Lyme at IGENEX LABS IN CA, USA. The ONLY AUTHORITY ON LYME TESTING! LabCorp & Quest Diagnostics Lyme Tests are practically useless as they do not include the 3 most common Lyme cell wall markers. Many get a false negative result due to this! Your Dr can send your blood to Igenex with the order form overnight. Make sure they also order co-infection tests too like Babesia, Cat Scratch Fever, etc. Because when you get that tick bite, u get EVERYTHING that tick was carrying! Some have even TWO other co-infections! YOU DO NOT HAVE TO TRAVEL ANYWHERE! YOU DO NOT HAVE TO BE IN A TICK OR MOSQUITO ZONE. YOU CAN GET IT FROM A BLOOD TRANSFUSION! Some studies (PubMed & Peer Reviewed) are now saying that Lyme can be sexually transmitted, as the bacteria have been found later (post the single patient diagnosis), in both husband and wife, and in vaginal and seminal secretions.
Good luck!! Your post was older. I wonder what have you determined thus far??
Trust me, I would not tell you anything I did not know for sure. I do not assume or speculate. I was in the middle of my Masters degree when this all unfolded in front of me. I lie awake at night for hours, combing thru studies and information, trying to save someone! Because sadly, no one else cared enough to do it!
So.. Excuse my long post... I try to tell everyone, everything I know, in hopes that it will save someone else from the hell most have had to go thru. If it helps even just one person, then it was worth every word.
Dont let it all scare or worry you. It is just very thorough general info and testing info, so that you don't miss anything.
I encourage you to study on your own and with your Doctor. What I give you is information only. I cannot diagnose you or tell you what to do. That is for you and your Doctor to decide. But you have the information that you need now.
The Drs. in FL at Parathyroid.com have a great website! Download their App and track your lab results to see if the algorythmn diagnoses you with Hyperparathyroidism. It did for many and then adenomas were found. Amazing app!
The other person you were speaking with may want to do some of the same tests. I got knocked off the page their comment was on when I began to reply to you, so I cannot see what they said, but I think I saw many of the same symptoms.
Hoping luck, endurance and better days ahead for all of us!
pretty sure it sounds like a problem with your parathyroid. go to the doctor and ask for calcium levels and path levels. research hyperparathyroidism if you have yet to be cured
pretty sure it sounds like a problem with your parathyroid. go to the doctor and ask for calcium levels and pth levels. research hyperparathyroidism if you have yet to be diagnosed.
Hi RR -
If you want to rule MS out you need to see a neurologist that specializes in the diagnosing and treatment of MS. You will likely under go MRI's of you head, c & t - spines. You will have lots of blood work to rule out mimics like Lyme disease. You may have evoked potential tests and nerve conduction studies. You may also have a lumbar puncture. Most importantly you will have a thorough clinical exam by a doc who is skilled at detecting MS.
It's the only way to rule MS in or out.
Kyle
Many other medical conditions cause 'similar symptoms' to those associated with MS, because MS is a disease that affects the central nervous system, but whilst the non specific common symptoms may seem similar, they are not the same and the diagnostic evidence is different, as is causation.
"I've looked up, a number of things I've experienced, which range from vision/eye issues to muscle spasms/weakness to urinary problems to balance problems to cognitive problems to fatigue to tingling/tremors, etc. seem pretty consistent with MS."
These specific issues are only a portion of your entire symptom list, but even these specific issues your thinking are consistent with MS, they would still be non specific, commonly associated with many medical issues and or not suggestive of a neurological causation..
eg "urinary problems" whilst an issue associated with MS, it is a very common female issue in general. What your experiencing is not the same as what happen's if caused by MS, because your diagnostic evidence is of 'normal' bladder function...
"went to the urogynecologist today, he said my bladder is working fine and that when I pee, I am emptying my bladder all the way. His suggestion was to drink less. "
eg "fatigue" whilst another issue associated with MS, it is also a very common issue in general and you've actually mentioned being diagnosed with multiple condition or experiencing multiple issues that definitely include 'fatigue' as a general symptom eg "severe anxiety and depression", "weight gain", "very heavy periods", "high BP", "thyroid disease", "muscle and joint pain", "pain and stiffness", "sleep problems" etc
All of the symptoms you've mentioned experiencing in your posting history are generally not specific or are commonly associated with many medical conditions, with the majority not suggestive/consistent with a neurological causation and or not connected with MS and or rarely a primary symptom of MS.
Which would basically means a neurological condition like MS, would be quite low on your list of any of the potential conditions, that could be causing you all these issues. A neurological explanation seems a highly unlikely explanation for what you've been dealing with imho but getting a basic neurological exam from your GP will probably help reassure your concerns...
Cheers.......JJ
Have you ever had a mri done? That is the typical next step when a doctor perfoms a brief neurological exam.
Any doctor can do this and can tell briefly if something is going on. If they r concerned they would send youu to a neurologist and/or order a mri.
In ms what they would be looking for are specific lesions characteristic of ms.
I just read that you had a mri done but I think your best bet now is to do further testing with your doc to see what comes up.
Sorry you are suffering so,
Barb
Can you explain what sort of symptoms I should be looking for? From the sites I've looked up, a number of things I've experienced, which range from vision/eye issues to muscle spasms/weakness to urinary problems to balance problems to cognitive problems to fatigue to tingling/tremors, etc. seem pretty consistent with MS. How do people typically get diagnosed for it and what symptoms are they basing their search on? I'd read early on one of the most prevalent symptoms is fatigue. That's pretty much consistent with life lol, so it seems tricky to catch early.
I'm really not hoping for MS, I'm just trying to group together symptoms, see what they're consistent with, and then have whatever it is ruled out. Right now what I'm dealing with is Wow, you have a lot going on, I'm not going to bother to look at everything that's bothering you and just say IDK and send you on your way. It's super frustrating :(
Hi RR -
Based on what you mention it does not sound like MS should be on your list. WHile man if us have bladder issues, they are rarely the presenting symptom.
Kyle
The only thing the doctors have been willing to do up until a few months ago was a glucose test, I've had a fair number of them and it always comes back normal, so no diabetes. Urinalysis they did in June came back completely normal as well.
Hi and welcome,
I had a look through your posting history and from what you've mentioned previously, i honestly don't believe a neurological condition like MS would explain the totality of what you've been dealing with.....
"Now, about two years ago I had a terrible run of illnesses that included the flu, pneumonia, Lyme, mono, mono-induced hepatitis, and a severe reaction an antibiotic. All at the same time.........For the last year I've been experiencing severe anxiety and depression, memory loss, brain fog, confusion, extreme irritability, very heavy periods and terrible cramps despite going on birth control to help regulate my periods, constant fatigue and exhaustion, muscle and joint pain, aches, and weakness, heart palpitations, excessive sweating and heat intolerance, GERD and stomach issues, trouble sleeping, weight gain (probably about 30lbs in the last eight months or so), eye issues, tightness in my throat, trouble swallowing, shortness of breath, etc. "
"I went through a string of serious illnesses a few years ago, and while they were searching for the cause, they discovered that I had Lyme disease, and they weren't sure how long I'd had it. Because I was suffering from mono, they didn't put me on any kind of antibiotics for the Lyme, and after I finally recovered from everything that was going on, it kind of fell off the radar and went untreated.
Flash forward two years, and I've been suffering from a large number of symptoms that point to thyroid disease (including multiple nodules, one large enough to cause swallowing and breathing problems). GP and ENT have run a series of blood tests, and ENT ordered a number of scans, biopsy, MRI, etc. Because everything has come back "normal," ENT initially believed my problems were most likely coming from the Lyme because it went untreated. "
"fatigue, anxiety, depression, fat pads over my collar bones, belly fat, weight gain, easy bruising, excessive sweating and being hot a lot, brain fog, fluid retention, facial flushing, high BP, weakness, pain and stiffness, the pattern of my sleep problems, mood issues, inability to deal with stress, etc."
........dry mouth or feeling thirsty can actually be a medication side effect but you could possibly be pre-diabetic or even hypoglycaemic, but in regards to MS it would be highly unlikely in my opinion.
You did mention upcoming thyroid surgery to remove the nodules, which might be the connection to everything but you were going to see an endo, which i would of recommended you do based on your symptoms and I would also recommend you also seek help for the mental health issues if you haven't already done so, as it would make a significant difference to your well being.
Cheers.........JJ
Have you thought about diabetes as well? The constant thirstiness and urination are signs and symptoms as well?
Good luck
Barb