1. < Autoimmune Diseases

TSH was 7.94 and T4 normal I’ve had RA for over 35 years, hashimotos?

Posted by sunscominup @sunscominup, Mar 24 10:41am

I was diagnosed with RA and pos ra factor over 35 years ago, and I have sojourn’s, not lab confirmed. I recently went to my general practitioners office and had my yearly labs drawn. My TSH was 7.94. Never high before. I’m a 69 yo female. I’m on prednisone daily for 30 yrs. I’ve had several severe infections over the last year. My dr wasn’t concerned about my Tsh but I have all of the symptoms of hypothyroid. Constipation, dry skin, very tired, etc. I had to practically beg her to retest me in a few months for hashimotos because I am worried about it. Any help out there to make me feel better?

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sunscominup | @sunscominup | Mar 25 10:00am
In reply to @richardab "Your TSH is definitely indicating hypothyroidism. It's too high regardless of your age. If your general..." + (show)
@richardab

Your TSH is definitely indicating hypothyroidism. It's too high regardless of your age. If your general practioner does not address the issue, find another who will (I suggest an internal medicine doc for a GP) or ask for a referral to an endocrinologist.

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Richardab, thanks. I am considering a change. I will ask for a referral to probably an endocrinologist. Thanks.

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sunscominup | @sunscominup | Mar 25 10:05am
In reply to @thisoldewe "Hi suncominup! May I ask why you have been on Prednison for 30 years? What is..." + (show)
@thisoldewe

Hi suncominup!
May I ask why you have been on Prednison for 30 years?
What is your main diagnosis?
Have you seen a rheumatologist for your RA? There have been many advances in the last 3 decades.
I would suggest that assessments by
1. a rheumatologist, including a bone scan and
2. an endocrinologist: an endocrinologist would look at all of your hormone levels: you may need some 'tweeking after taking prednisone for so many years.
I think thorough evaluations in these two specialties would be an excellent start.
All the best to you and let us know how you get on!

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Christine, thanks for your reply. I have been on prednisone for all of those years due to uncontrollable RA, I have tried everything under the sun and nothing has worked. I go to a research facility that specializes in autoimmune diseases. So, believe me, I’ve tried everything! My Rheumatologist is trying. I will try to get a referral to an endocrinologist and have my hormones checked, that’s a good idea, thanks.

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2 replies
sunscominup | @sunscominup | Mar 25 10:14am
In reply to @kayabbott "The median TSH for our age and gender is about 2-2.2 (table in below link). I'm..." + (show)
@kayabbott

The median TSH for our age and gender is about 2-2.2 (table in below link). I'm a 69 yo woman that has had hypothyroidism for ~25 years. I do best with a TSH of about 1, and certainly less than 2. A TSH of 3 gives me constipation, fatigue, and have to starve myself to keep my weight under control. TSH is a hormone from the pituitary glad that helps regulate thyroid hormone levels; normal range is about 0.4 to 5.5. My T3 and T4 levels (thyroid hormones) are within normal range even with TSH levels of 0.15 to 3 (0.15 approaches hyperthyroid). My doctor doesn't believe me when I tell her I have hypothyroid symptoms with a TSH of 3 because my free T3 and T4 thyroid hormone levels were normal range. She finally increased my Synthroid and I'm back to my normal (no constipation, being able to eat normally, biking/hiking). I collect autoimmune diseases (celiac, collagenous colitis, Reiters...) but am able to control them with diet (food logs are handy to see if you have any food intolerances), exercise, enough sleep, and managing stress. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5794073/

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KayAbbott, thanks for your reply. I have so many symptoms that it’s crazy. I tell my pcp but it was like pulling teeth to get her to do a thyroid work up in a couple of months. In the mean time I will continue to try to deal with the symptoms and starve myself and gain weight anyway, take laxative occasional to have a bm and drag myself around to try to enjoy life. Hopefully she will give me a referral to see an endocrinologist.

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1 reply
dlydailyhope | @dlydailyhope | Mar 25 10:14am
In reply to @sunscominup "Dlydailyhope, I did not have a t3 drawn but should in a couple of months." + (show)
@sunscominup

Dlydailyhope, I did not have a t3 drawn but should in a couple of months.

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@sunscominup
Do not wait months just to suffer. Ask your doctor to give you a lab slip now to check free T3 and TPO. Insist on it!

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dlydailyhope | @dlydailyhope | Mar 25 10:18am
In reply to @sunscominup "Joanne, thank you for your reply, I have also had a rash at the nape of..." + (show)
@sunscominup

Joanne, thank you for your reply, I have also had a rash at the nape of my neck. I also agree that I should see an endocrinologist and I will try to get a referral to one. I definitely feel that there is a total lack of interest in my health at my age. My pcp is young and just keeps telling me, “well you’re getting up there in years, you’re not getting any younger” ugh.

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@sunscominup
You pcp sounds young and dismissive. Unacceptable! You may want to go to a dermatologist for the rash. I have even had my dermatologist test my thyroid when I lost hair (alopecia areata) so you may be able to get a quicker look at your rash and possible autoimmune tests if it affects your skin.

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dlydailyhope | @dlydailyhope | Mar 25 10:28am

@sunscominup
Could you have your rheumatologist check for thyroid autoantibodies (TPOAb, TRAb, thyroglobulin, etc.)? My rheumatologist tested me for several years and did tons of bloodwork but never told me that my bloodwork showed my body was attacking my thyroid gland.

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Christine | @thisoldewe | Mar 25 10:38am
In reply to @sunscominup "Christine, thanks for your reply. I have been on prednisone for all of those years due..." + (show)
@sunscominup

Christine, thanks for your reply. I have been on prednisone for all of those years due to uncontrollable RA, I have tried everything under the sun and nothing has worked. I go to a research facility that specializes in autoimmune diseases. So, believe me, I’ve tried everything! My Rheumatologist is trying. I will try to get a referral to an endocrinologist and have my hormones checked, that’s a good idea, thanks.

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So glad you have a good medival team. RA is a monster isn't it?
You will find lots of understanding support, as well as good advice on Connect.
I have found it so helpful with my various dilemmas.
All the best as you forge onward .

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kayabbott | @kayabbott | Mar 25 11:42am
In reply to @sunscominup "KayAbbott, thanks for your reply. I have so many symptoms that it’s crazy. I tell my..." + (show)
@sunscominup

KayAbbott, thanks for your reply. I have so many symptoms that it’s crazy. I tell my pcp but it was like pulling teeth to get her to do a thyroid work up in a couple of months. In the mean time I will continue to try to deal with the symptoms and starve myself and gain weight anyway, take laxative occasional to have a bm and drag myself around to try to enjoy life. Hopefully she will give me a referral to see an endocrinologist.

Jump to this post

I had to badger my pcp to increase my thyroid medicine. Caffeine helps a bit to increase energy (mostly while exercising). Psyllium husk helps with constipation; the mix of soluble and insoluble fiber helps move things along and helps feed the bacteria in your GI tract. If your pcp won't address your TSH levels, maybe another doctor will.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 25 12:00pm
In reply to @sunscominup "Christine, thanks for your reply. I have been on prednisone for all of those years due..." + (show)
@sunscominup

Christine, thanks for your reply. I have been on prednisone for all of those years due to uncontrollable RA, I have tried everything under the sun and nothing has worked. I go to a research facility that specializes in autoimmune diseases. So, believe me, I’ve tried everything! My Rheumatologist is trying. I will try to get a referral to an endocrinologist and have my hormones checked, that’s a good idea, thanks.

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@sunscominup You’ve gotten lots of good advice here! The members are awesome! Can I ask you the name and location of the research facility that you go to? It may be possible to refer others to it.

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Joanne Narna | @mothermary1 | Mar 25 1:32pm
In reply to @sunscominup "Joanne, thank you for your reply, I have also had a rash at the nape of..." + (show)
@sunscominup

Joanne, thank you for your reply, I have also had a rash at the nape of my neck. I also agree that I should see an endocrinologist and I will try to get a referral to one. I definitely feel that there is a total lack of interest in my health at my age. My pcp is young and just keeps telling me, “well you’re getting up there in years, you’re not getting any younger” ugh.

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I live in Decatur Ga and go to Emory. Just left Boston in August. I honestly feel all endo doctors can be to flexible with how they treat you. My only level that is off I’d my tsh. My problem is if they put me on a higher dose it brings my tsh level to an abnormal level yet the low dose works for a few months then it doesn’t. I’ve tried two days in a week taking a higher dose and the rest of the time the lower dose but still off.
I’m truely like a yo-yo and no reasons why. I can always tell when I’m off because my bowel issues get worse than usual. Some folks feel nothing and others know right away.
Get an internist not a family doc and definitely get your doctor, if you need a referral, to allow you to go to endo. Don’t wait a few months. It already takes too long for new appointments. Make that call. If it’s hypo you can get on meds and feel better.
I have no idea about our neck rash. Plus I have a burning mouth. Just hang in and one day at a time.
Be well soon,
Joanne

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