Thyroid, autoimmune, both or neither?

[CaitlynW67]

Hello, I am new to the forum and am hoping to get some help.

I am a 50yo F and I have felt generally unwell for several years.  I have had my thyroid checked and also ANA and subsequent markers for autoimmune disease.  While I have multiple symptoms of both (more thyroid until recently), none of my blood tests have been positive except for a mildly elevated ANA.

Symptoms include, fatigue, trouble sleeping (wake up, have a hard time falling back to sleep), weight gain despite no change in diet or activity level, dry skin, dry lips, cracked heels, constipation, memory issues, can't focus well, hair loss, aches and pains. There are others, but these are the most unpleasant.

My thyroid panels are all in range.  My ANA has been positive for 4+ years and fluctuates but the rheumatologist says that it is normal for it to fluctuate and that it doesn't correlate well with symptoms.  All other related tests have been normal.

My sed rate (was at 1-2 for 4+ years and is now 12) and CRP (has been 0.3 or lower for 4+ years and is now 2.6).  Both are still normal but have risen considerably recently when I started complaining of knee stiffness and a constant ache behind my knees and thighs.  I hear crunchy, squishy noises when on stairs (sorry not great medical terminology but I don't know how else to explain it).  And, feel stiff and swollen although can't really see it.  I do get a puffy area just below my knees.  I asked the rheumatologist about it before and he thought it was a fat deposit (I am overweight) but the only thing is, it goes away.

When my knees got intolerable (I almost can't go down stairs), I tried to get in with him but ended up with another doc in the practice.  He thought maybe it was Baker's cysts and I wanted a conservative approach so he gave me mobic and told me to go for u/s in 2 weeks if it wasn't better.  The ache improved with the mobic, but the stiffness persisted.  I was afraid of joint damage so went for u/s.  I haven't seen the report, but was told that there was no evidence of Baker's cysts.  My knees/thighs are still immensely achy and stiff.  I actually have several lumps that hurt on the back of my thighs.  I have pointed them out and been told they are fat deposits.  

I happened to see my pcp for allergy issues and my blood pressure was high, primarily the diastolic.  She was concerned and checked it 3 times.  I suggested the mobic may to be blame and she said it was possible, however my bp was high when I saw the rheumatologist the month before when I wasn't on it.  They never said anything, so I didn't know.  

I go to my rheumatologist in a few months.  No one seems to be concerned about the pain/ache and it is generally felt it is because I am overweight.  I am only slightly overweight so while I think that it has an impact, I don't believe it is the sole cause.

The only other strange symptom is I have this twitch/flutter in my left abdomen just below the belly button.  I am post-menopausal so I'm not pregnant.  I read it might be stress, which I am currently under and can't really do anything about.  Time will lessen the stress, but likely not for several months.  Not sure if this is related to anything or not.

I think this covers everything.  I am happy to share any other info that might be helpful.  I have lots of lab work if it is useful, even though everything is normal.  I have posted in the autoimmune forum as well since from my reading, think some of my symptoms could be explained there as well and I have the mildly elevated ANA.

Appreciate any help/advice.

Cait

[CaitlynW67]

Thanks Barb.  I took pictures of myself 5-10 years ago to show him my full head of hair and how much thinner I was.  He held them up to my face and said he did see a big difference.  Checked my cortisol levels and they came back normal too.  Then just told me to lose weight.

I have an appointment with a naturopath as a last resort.  I don't have the stamina to run through more tests so I hope he'll be able to work with what I've already had done.  

I'd really like to do a trial just to see if I can improve my symptoms.  The ache in my legs and the effect on doing stairs is very concerning to me.  The xray and u/s both showed nothing out of the ordinary.  They ache something fierce.  It perplexes me b/c I can entirely feel several lumps behind my knee and thigh that hurt/ache and yet the most recent u/s said there was nothing there.  I don't get it.

Do you have an approach with a naturopath/holistic doctor that would reasonably convince them to do a trial?

If I were to do a trial, would that exacerbate my blood pressure?

Thanks again for the reply.

Cait

[Barb135]

I'm not surprised that your doctor decided your thyroid levels were "normal"; I suspected that would be the case, because that's what we hear so often.  This is typical - they care more about the lab results than they do about how you feel.

To answer your question... no, simply being overweight should not cause hair loss.  There may be medical conditions that can cause, both, weight gain/inability to lose and hair loss, but those symptoms won't cause each other.

Your thyroid is located below your Adam's apple, at the bottom of your throat.  If your doctor felt your throat, he should have been able to feel it.  

I understand what you mean about the overweight part... I had the same problem for quite a while, until I finally convinced my doctor that I'd lose weight if I could.  He started doing other tests and we learned that along with hypothyroidism (I've been on medication for almost 10 yrs), I also have insulin resistance/metabolic syndrome, which makes it doubly hard to lose.  I had to completely change my diet and managed to lose about 20 lbs.  I'm still overweight, but not a lot, at this point and my doctor has quit  hounding me.  

I'm, now, working with a Nurse Practitioner that does functional medicine to help me lose more weight and get/keep my thyroid levels where I need them.  

Sometimes, we can find a conventional medicine doctor that will work with us, but many people find that a functional medicine doctor is the only way they can get adequate treatment, without waiting until they are very ill.  You have to be careful, because many functional medicine doctors don't accept insurance and insist that lab work be done through them, plus the expect you to buy supplements through them, but there are some that do accept insurance and don't expect you to buy anything through them.  The nurse practitioner I'm seeing actually functions as a primary care physician even though she practices in a more holistic manner.

My recommendation is try to find another doctor if that's possible.

[CaitlynW67]

Thanks Barb.  Yes, that is what my pcp said, my thyroid levels are normal.  I pushed to see an endo, who did a thorough exam (I guess).  He felt my neck and looked at my labs and declared I did not have a thyroid issue.

He was interested in the hair loss I think because it's the one symptom you can see.  But after feeling my neck he just told me I was overweight. Does being overweight cause hair loss?  I have never heard of it, but what do I know?

I have not had an ultrasound on my thyroid.  I do feel a small lump but it is at the very bottom of my throat so I don't think that is thyroid.  Maybe a swollen gland?  Doesn't hurt and has been there for years.

I don't think I can get my present pcp to order an ultrasound on my thyroid.  No one seems interested in me feeling better except me.  As horrible as it is, I just wish one test would show up out of whack so i could get some help and direction in what I need.

Being overweight definitely compounds whatever is going on, but I wasn't overweight when I started complaining I didn't feel well.  Now that is all I am told -- lose weight.  I would love to but I am so tired and achy, I can hardly move most days.

Any idea how to get an ultrasound or what next steps should be taken?

Cait

[Barb135]

Both your Free T3 and Free T4 are well below the recommended levels.  Most of us find that we feel best if Free T4 is about mid range; yours is only at 20% of its range.  We also find that we feel best if Free T3 is in the upper half to upper third of its range; yours is only at 26% of range.  

I'd definitely consider you hypothyroid, though I'm sure your doctors are, most likely, looking at the TSH and deciding your aren't hypo, because that's what most would consider "perfect" and your FT levels *are* in range.

Have you had a thyroid ultrasound?  There are a few people that do, actually, have autoimmune thyroid disease without having antibodies.  This can be diagnosed via ultrasound if ones thyroid has specific characteristics.  If you haven't had an ultrasound, ask your doctor for one. Many/most of us with autoimmune thyroid condition have nodules on our thyroid and inflammation caused by autoimmunity can be seen on ultrasound.

With the low TSH, you could also have a condition called Secondary, or Central, hypothroidism.  This is when there's really nothing wrong with the thyroid.  There's a problem with the pituitary/hypothalamus axis in which there's not enough TSH to, adequately, stimulate the thyroid to produce enough thyroid hormones to fulfill your needs.

High blood pressure can be caused by a number of things, including hypothyroidism, or simply the anxiety of feeling bad and not knowing what's wrong with you.  Elevated blood pressure definitely bears monitoring.  It's important to note that some of us have a condition known as "white coat syndrome", in which blood pressure rises simply because being in the doctor's office produces adequate anxiety to raise blood pressure.  I never used to have it, but I've developed it over the past 10 yrs - probably because  doctor's appointments that involve my thyroid treatment have all become pretty traumatic...  :-)  You might try checking your blood pressure at a pharmacy, when you're more relaxed and see what it is.  I check mine at home all the time and it's almost always good.

Likewise, edema/swelling can be caused by a number of things, including hypothyroidism, sitting in one place for too long, eating too much salt, the blood pressure issue, etc.  When I was very hypo, I had swollen bags under my eyes and my cheeks were really puffy.  This is classic of hypothyroidism.  Leg/ankle swelling is also common with hypothyroidism, but can go hand in hand with the blood pressure issue.

Body aches and stiffness, again, can be hypo symptoms.  They aren't, typically, related to fluid retention, except at the site of retention i.e. if your ankles are swollen, it hurt to swivel your ankles or walk, because your skin gets tight, but it isn't going to hurt your muscles.  Sometimes, being overweight (you may not be) can cause body aches/pains (it did for me), but if your weight issue (if you have one, as I do) is related to hypothyroidism (mine is), then it's a hypo issue.

The only way to tell if your symptoms are related to being hypo is if you can get your doctor to give you a trial dose of thyroid medication to see if any of your symptoms go away or improve.

Many doctors won't prescribe thyroid hormones unless ones TSH is out of range because that's all they consider when it comes to determining if one is hypo.  A lot of people with Secondary hypothyroidism get missed for this reason.  You should ask about this possibility, as well as ask for an ultrasound if you haven't already had one.

[CaitlynW67]

Hi Barb,

TSH  1.88   .4-4.4
FT3   2.8    2.3-4.2
FT4   1.0    .8-1.8
Anti TPO  1.0 Not sure range, but this is negative.

No TgAb that I am aware of

I have a previous thyroid panel, same ranges

TSH  1.86
FT3   2.9
FT4   1.0
RT3   17

I've had all the autoimmune tests (RF, sjorgen's, anti-DNA, Smith -- I may have some of the names wrong, but I have had all the tests).

This last visit, they checked all again except RF, which seems like could be RA, so strange they neglected this one.

Rheumatologist hasn't said anything is concerning and is fine waiting to see me.

I read somewhere that untreated (or inadequately treated) hypothyroid could raise BP, specifically diastolic.  Seeing as I now have high blood pressure (2+ readings), my pcp is waiting to monitor, however, I'm wondering if this points more to a thyroid problem or if that is just a bad coincidence.

Could the ache and stiffness I have be water retention?  Would it be possible to have water retention without it being obvious externally?  I feel swollen, esp legs, but can't see swelling, just fat.

If I am retaining water, is it more likely a thyroid or autoimmune issue?  Or no way to tell.  Does the high BP cause water retention or could the water retention cause the high BP?

I have been taking vit D3 as well as it drops if I don't supplement.  I also have a low in range B12 level.

I hope this helps.  Please let me know if you have any other questions and thank you in advance for your help.

Cait

[Barb135]

Can you please tell us what thyroid related blood tests you've had and please post test results, if you have them.  To test for thyroid function, you would, at the very least, have to have TSH, Free T4 and Free T3 tests.  

To test for autoimmune thyroid condition, Hashimoto's, you'd need to have Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb).  Both are markers for Hashimoto's and some of have one or the other; some of us have them both.  

ANA is not always present with Hashimoto's, but is often present with autoimmune connective tissue diseases, such as RA, Lupus, MS, etc.