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Michellecrcrn
@michellecrcrn

Posts: 20
Joined: Jun 02, 2016

Hypothyroidism/hashimotos, endometriosis/liver lesions high ast/alt

Posted by @michellecrcrn, Jun 2, 2016

ive had hysterectomy for severe endometriosis. Hypothyroid for 20 years. Dxd with hashimotos. Elevated alt and ast. stopped estrogen injections, stopped antidepressants, eat healthy, don’t drink alcohol, I have two liver lesions. Right renal cyst, a symptomatic of hematuria in urine, no gallbladder (removed in 2013) still have upper right quadrant dull aches and back), feeling of fatigue, get “flares” of fatigue, headache, weakness, anxiety, right eye twitches, tendon pains/ligaments. Tested for lymes, Ana’s, sjogrens, R.A, lupus, all negative. All vitamins in range except vitamin d little low. I’m wanting to know what other tests that I should have, or a special dr to see? Rheumatologist didn’t seem too concerned and really didn’t get answers, other than try exercise. I would exercise if I didn’t have fatigue and dull upper quadrant pains??? Help!

REPLY

@michellecrcrn What a list! Searching for answers in itself must be very tiring, besides the fatigue caused by the symptoms and conditions you’ve listed. @jimana @uneeq1 @mojoearle @jillnc might you have some thoughts about other tests Michelle could investigate or what type of specialist she could see?

@colleenyoung

@michellecrcrn What a list! Searching for answers in itself must be very tiring, besides the fatigue caused by the symptoms and conditions you’ve listed. @jimana @uneeq1 @mojoearle @jillnc might you have some thoughts about other tests Michelle could investigate or what type of specialist she could see?

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Wow.  When I was in enough pain (hands and wrists and upper front arms) and had high fevers ar night only.  I went to my general Dr and said we need to figure something out.   I had already called another RA Dr for a second opinion as the first never gave me a diagnosis,  but stuck me on meds for 4 months (ran lupus, hep, aids, etc because I’d had 3 units of blood when I had my daughter).  Anyway Dr ran blood work, wbc was .5 over normal so she sent me to hemotologist.  She didn’tthunk I presented with signs of lymphoma,  but ordered a bunch of blood tests and a CT scan of my head to my abdomen.  Finally got in to the new RA dr and was diagnosed with sjogren’s.  Reg Dr diagnosed the Hashimoto’s.  Hemotologist did not see any cancer, but they saw dots on my lungs and with the fevers wanted me to go see infectious disease to rule out a fungal infection…3 weeks later I find out I have MAC.  I’ve also gone to see my upper gi dr and have an endoscope scheduled for next week as the CT scan indicated something with the esophagus too.  And RA is having me go see a pulmonary Dr (over a month wait for him) to make sure everything is being done for my lungs.  I would say my aches in hand/wrist and upper arms went away taking 5mg of prednisone given to my by RA dr to help while the plaquinell kicks in.  My right upper arm has started hurting again and not sure why.  Will ask my RA at my appt this month.  Guess I would suggest going to the Dr you feel is the most knowledgeable about what is going on with you and discuss options with them.  My reg Dr said in a few months if nothi g had been figured out she was going to send all my info to mayo clinic.   I also think the CT scan helped for me, besides bloodwork.  Get second opinions and if you don’t feel good.. keep pushing the Drs.  You know what you should feel like and they only know what you tell them. Good luck, sorry for the long response.

I have some of the above medical issues and all of most of the symptoms vitamin d will cause quite a few things mayo clinic is where i would recomend being seen they treat the whole person and not just parts of you when u leave u will have the answers and a plan on treatment. Liver issues will cause the vitamin and thyroid issues . (I have pbc + many other things)

I’ve had years of fatigue and dull pain that led to testing you talk about. I ultimately landed at an endocrinologist at Mayo in Rochester (thyroid/cholesterol and stain problems) who recognized possible fibromyalgia characteristics. He ruled out so much then I had a consult with the team that specializes in fibro. I live 7 hours away and I know it was worth the trip for me there. They are efficient and thorough if you are willing. Maybe contacting them could narrow down some of your questions or concerns you could bring to your doc?

@jharsh

I’ve had years of fatigue and dull pain that led to testing you talk about. I ultimately landed at an endocrinologist at Mayo in Rochester (thyroid/cholesterol and stain problems) who recognized possible fibromyalgia characteristics. He ruled out so much then I had a consult with the team that specializes in fibro. I live 7 hours away and I know it was worth the trip for me there. They are efficient and thorough if you are willing. Maybe contacting them could narrow down some of your questions or concerns you could bring to your doc?

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Thank you for all responses. As of now im dealing with my 14 year old daughter who just got dxd with hashis and nodule on thyroid. Her lobes are enlarged as well. UIC university of Chicago with pediatric endocrinologist in a few weeks. As for me I keep hearing bad stories about endocrinologists and really am sick of drcapooitments and tests. My father has hashis and R.A, was diagnosed with stage 2 lymphoma 5 years ago(he beat it yay). I’m just trying to figure out what would cause elevated alt and ast? But I do/did have stage 4 endo. Was on bladder and bowels and abdominal wall. When I research endo on liver it seems to fit the possibility for me. I’m looking for a dr who is experienced in endo on the liver. As my one lesion has grown. I fear eventually I may need surgery. Could thyroid /hashis cause liver elevations? This is nuts I’m going in circles with Drs here and all say different things. I do not take supplements, only levothyroxine. I feel like a hypochondriac. But I know my body and can feel something is being missed.

@jharsh

I’ve had years of fatigue and dull pain that led to testing you talk about. I ultimately landed at an endocrinologist at Mayo in Rochester (thyroid/cholesterol and stain problems) who recognized possible fibromyalgia characteristics. He ruled out so much then I had a consult with the team that specializes in fibro. I live 7 hours away and I know it was worth the trip for me there. They are efficient and thorough if you are willing. Maybe contacting them could narrow down some of your questions or concerns you could bring to your doc?

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That’s how I felt about these fevers that were only occuring in evenings.   Don’t give up keep pushing!  Some Dr out there will figure it out.  Just wish at times there was a master list everyone could use.  Good luck!

Liked by Michellecrcrn

Sorry to hear that both you and your daughter are facing health challenges @michellecrcrn. Should you wish to consult Mayo Clinic for a second opinion, here are the contact numbers and online form http://mayocl.in/1mtmR63

I like @jillnc‘s advice “Don’t give up.”

@Michellecrcm I have a friend with Hashimotos and her diet is very,
very strict. Have you been educated on that? ladyjane85

@ladyjane85

@Michellecrcm I have a friend with Hashimotos and her diet is very,
very strict. Have you been educated on that? ladyjane85

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Yes. I’ve been doing AIP diet since October. Could be also the cause of fluctuating thyroid levels and why my dose is lowered. I haven’t completely cut out all gluten, but I am pretty sure I am allergic to it. I just can’t afford to lose weight, I’m very thin.(shocking I know), no one believes I’m hypo by looking at me. You would think I’m hyper. I need to retain my weight and since I’m not a big fan of ice cream or shakes, I don’t know how else to keep weight. Lol! I cut down on dairy(eat mainly eggs and lactaid milk), cut down on refined sugars, added Himalayan salt, herbs into diet, fruits and veggies, meats and fish. I’m aware of goitrogens and don’t eat many. I’m in menopause so I know my hormones are a mess. It’s hard to balance them when one disease overlaps another. I’m sure hashis can cause many of my symptoms, as well as endometriosis. Just hard that endo is a very under researched disease. I am having a hard time finding Drs who know anything about endo other than that it is very painful. Drs keep wanting to just put me on meds and for me it’s just masking the problem rather than helping.

Liked by fastfay

@colleenyoung

Sorry to hear that both you and your daughter are facing health challenges @michellecrcrn. Should you wish to consult Mayo Clinic for a second opinion, here are the contact numbers and online form http://mayocl.in/1mtmR63

I like @jillnc‘s advice “Don’t give up.”

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Thanks. Yes she is having a hard time most days and waiting for a specialist this long is crazy. Will update after we see dr.

@ladyjane85

@Michellecrcm I have a friend with Hashimotos and her diet is very,
very strict. Have you been educated on that? ladyjane85

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This is my first time here. I have Hashimotos along with Sjogrens, Fibro, and others, but I’ve never been educated on any diet. I would love to learn more about that strict diet for Hashimotos. Thanks.

@jharsh

I’ve had years of fatigue and dull pain that led to testing you talk about. I ultimately landed at an endocrinologist at Mayo in Rochester (thyroid/cholesterol and stain problems) who recognized possible fibromyalgia characteristics. He ruled out so much then I had a consult with the team that specializes in fibro. I live 7 hours away and I know it was worth the trip for me there. They are efficient and thorough if you are willing. Maybe contacting them could narrow down some of your questions or concerns you could bring to your doc?

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Hello, You both need to be tested for Angioimmunioblastic T-Cell Lymphoma (Rare), as I read your earlier post and now this one I’d ask to be tested for it. It’s common in children and she has a lot of the same symptons {good cure rate in children} For adults it depends on age and other health issues of patient but you have a lot of same symptons and it can cause swelling in liver or spleen or both. Now I was told it’s painless but I’ve had major pain with mine. It took 2 years to get my diagnosis and by then it is stage 4, Malignant, ect….I looked it up and talked to Lymphoma Society and it’s not uncommon for a long time to get a diagnosis, and by then most patients are 3rd or 4th stage Cancer.

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