Direction -- which way to go

[JJWatkins]

I am new here and posted in the thyroid forum, but because of a positive ANA, would like to get input from the autoimmune community as well.  Sorry it is long.

I'm looking for some help with where to turn to hopefully resolve some of my ongoing health issues.  I've long suspected hypothyroidism but my labs have either been very lacking (no free levels, etc) or the ones I've had have been "normal" despite a lot of symptoms I can't explain -- but which doctors attribute to getting older (I'm in my early 40s) or taking care of my kids.  Ugh!  I've been having some issues (many long term, some more recent).  Sorry this is kind of long but I want to give as much info as I can..  43 yo, F, 4 kids, 3 miscarriages.

For approx. 10 yrs -- fatigue even with rest, cold (raynauds) hands/feet, don't really sweat, constipation, bloating, weight gain, irritability, forgetful, aches/pains, bodily hair loss (don't really need to shave more than 2-3x month and then usually very sporadic hair), low libido, fat arms and legs, low BBT -- sure there's more, but these are chief complaints.

I've seen a gastro and had colonoscopy, no issues, saw a derm for the hair loss, found nothing.

A few years ago my GP suspected B12 def because of extremity tingling.  It came back in the low 200s so started first with injections, then sublingual.  I also asked for my vit D3, which came back at 19.  Also supplementing.  B12 is in 500s and Vit D bounces in the 30s-40s.  No improvement in fatigue or tingling.

Now about 8 months ago I started losing a ton of head hair such that I basically have male pattern baldness at the crown and immense thinning at the sides.  I had taken out an iud about 3-4 months prior so determined that it was likely TE, but was sent to new derm who tested a few things and came back with a positive ANA (1:160).  Month later the ANA was down to 1:40, but my GP wanted me to see a rheumatologist.  I got in about four months later.  He ran every test known to man and only the ANA came back positive, but now 1:640.  I have an appointment mid-February to discuss what to do next.  He also asked for a hair biopsy, which I had done -- actually a scalp biopsy.  No inflammation but thinning hairs, TE and androgenic.  He poo pooed the androgenic and said it was the same as TE.  Derm said to do rogaine.

In the meantime I went back to my GP to ask her to rule out thyroid because it kept coming up as another cause for elevated ANA.  (Sjorgens, smith, RA, CRP, etc., etc. all normal/negative).

Se begrudgingly tested TSH, FT3, FT4, RT3, TPO and TgAB.

FT3 2.65 pg/mL.     2.3-4.2
FT4 1.08 ng/dL.      0.8-1.8
TSH 1.62 mIU/L. 0.4-4.5

RT3 16 ng/dL 8-25

She called and said all were normal.  TPO and TgAB were both negative.

My cycle has also gone crazy, from regular to 6 weeks, super heavy 5-7 days for couple of months and then back to 4 weeks and then 6 weeks, etc.

I read that the T3/RT3 ratio should be higher than 20 and I calculated mine at 16.6.  Firstly, is that even true about the ratio -- I mean all of my labs fall in the normal range. And, even if it is true, how big a difference could 16.6 to 20 really make?

Whether it is autoimmune, lupus, udctd, thyroid -- I don't really care what they call it, but I know something is "off" and I feel like my life is passing by, like I'm watching a movie.

I appreciate your time reading this.  I am not asking for a diagnosis, but rather help figuring out which path(s) should be explored further and how to find a doctor willing to help.

I have, as you can see, followed many symptoms through other possible causes (gastro, several derms, hematologist, rheumatologist, etc.), done colonoscopy, scalp biopsy, and in the last six weeks over $3000 in lab work (the lupus blood work is expensive!) and not one thing has been abnormal, except the ANA, which can also be elevated for no reason in some people.

And yet, I still feel terrible.

Couple additional questions.  First, how risky is it to take thyroid replacement if you don't need it?  I assume this is the main reason it's so hard to get a trial based on symptoms.

Secondly, I saw on another post about the myxedema skin test.  I can't pinch skin on my arms (or legs for that matter).  While I am overweight, I am not obese, and my arms always just feel more disproportionate.  When I saw my primary doctor to run the thyroid levels, I asked why my weight had kept going up (strange, too, how every other thing I've been checked for weight LOSS is a symptom!), especially my arms, she just said that that was where I gained weight.  So, how reliable is the mydexema skin test?

Also,what symptoms would be the most indicative of hypothyroidism?  

Assuming I could get a doctor to help, what would be the best trial?  T4 only or T4/T3?

Finally -- one other new symptom, which I have no idea if it relates to thyroid and/or autoimmune.  For about 4-5 weeks, I've had this minor swelling on the front of my shins just below the knee.  It comes and goes, maybe 1-2 x a week.

When I first noticed it, I thought it was just fat.  It was kind of squishy.  But the next day it was totally gone.  Sometimes my legs feel heavier, sluggish and even my feet/ankles, although I've had no discernible swelling anywhere except right below the knee.

I thought perhaps it was too much salt, but that hasn't proven true and I can't find any pattern as of yet.

I've never had any issues with swelling and nothing new has changed.

Any thoughts? Is this something I should check with my doctor?  It doesn't hurt or anything and it doesn't seem to add any new problems.


Thanks for your help!

[Jaybrooke]

Here in the uk we of course have the NHS free care. I struggled for years trying to get a trial of thyroxine as I knew within my self I had a thyroid problem even tho all my results were normal . My last doctor said she knew how I'll I was and should give me a trial but said she wouldn't because if she gave me something the blood tests said I didn't need , if something happened to me my family could sue her and as she had just bought the practice she could not take the risk!!!!!! But , she said if you go to a private doctor and pay he would most likely prescribe thyroxine which is exactly what I did and he did give me it starting with Avery low dose and upping it over 3 months. Amazing!!!!! A long story but to cut it short I was at least 50/ 60% better. I am not 100 % well by any means but very grateful for the improvement . I have just been diagnosed with hashimotos recently and the treatment for it is thyroxine , which speaks for it's self , this is why I became so much better!!! This doctor said he could.nt understand why other doctors were so reluctant to prescribe it when all symptoms pointed to a thyroid condition and before blood tests were " invented" this is what was the normal practice. He said it is very cheap and not dangerous if started on a very low dose ! doctors make mistakes my advice  don't give up talk it over and push for a trial 25 mg . Hope this helps

[Red_Star]

Welcome to limbo land. Been there and didn't like it lol.

Try out your waist to hip ratio (calculator online). My ratio was very high at 0.96 due to severe insulin resistance. Abdominal obesity is defined as a waist to hip ratio above 0.90 for males and above 0.85 for females.

Causes of abdominal fat:

High insulin
High cortisol
High estrogen
Low testosterone
Low DHEA

This is info from the About website on ANA...

"Antinuclear antibodies are found in patients who have various autoimmune diseases, but not only in autoimmune diseases. Antinuclear antibodies can be found also in patients with infections, cancer, lung diseases, gastrointestinal diseases, hormonal diseases, blood diseases, skin diseases, and in elderly people or people with a family history of rheumatic disease. Antinuclear antibodies are actually found in about 5% of the normal population, too.

ANA test results are just one factor considered when a diagnosis is being formulated. A patient's clinical symptoms and other diagnostic tests must also be considered by the doctor. Medical history is also significant because some prescription drugs can cause "drug-induced antinuclear antibodies"."

[JJWatkins]

That is unbelievable!

I have a positive ANA and no autoimmune, at least identified as of yet!

I have negative thyroid antibodies as well.

But so many symptoms I virtually can't keep track.  But if I could just get some more energy, grow my hair back, I'd be happier.  Lose some weight and I'd be ecstatic.  I can keep slathering on lotion, and Vaseline and taking something for constipation but I have yet to find a single thing to help with fatigue.  I would give just about anything!

[Red_Star]

My sister tested positive for mild myxedema of her upper arm a couple of years ago. I was surprised at this as she did not have any notable signs of hypothyroidism to me. I wasn't sure what to make of the result.  A few years later the symptoms really starting showing up and she was confirmed to have Hashimoto's thyroiditis. All her labs are still in "normal" range but both antibodies were elevated.

I personally am covered from head to foot in myxedema and at my worst my nose and lips thickened. My tongue was very enlarged too. This stuff is very stubborn to get rid of and my nose has decreased although not back to normal, lips back to normal (grrr lol), tongue decreased somewhat, and I can now pinch my lower arms.  This is after two years of thyroxine btw!

I had a "normal" TSH for about 4 years but other labs were starting to show the signs such as both liver enzymes were elevated and cholesterol started to rise in the range. My normal TSH is around 1.5 mU/L so the moment it rose into the 2's that was Hashimoto's thyroiditis causing those issues. Of interest, I have four autoimmune diseases with a negative ANA. :)

[JJWatkins]

Thank you for the feedback.  I think my biggest challenge is getting someone echo will listen and is knowledgeable enough (and willing) to help.

Have you heard of Wilson's temperature syndrome?  If so, what do you make of it?

With all the symptoms, including low bbt, but still "normal" thyroid tests, would this be something to pursue?

I think I've found a naturopath close enough that is familiar with this, so thinking about making an appointment.

But he doesn't take insurance, so before I spend a ton of money, would love feedback if this is real or just junk science.

Thank you.

[TheLightSeeker]

Hi JJWatkins and welcome to the forum.

I would suggest you look for a Functional Medicine Doctor to treat you according to your symptoms using NDT (also you may look for a Broda Barnes* Thyroid Physician). From your labs, the TSH is the least useful test result to go by in treating hypothyroidism. Both FT3 and FT4 could be higher. The ranges given are just statistical models, which does not corelate necessarily with any great degree of accuracy with normal thyroid function.
The FT3/RT3 ratio is believed to be the best indicator (lab) of thyroid function and ratios at 20% below the minimum low standard of 20 could affect some people severely, when simultaneous imbalances are present.

*You may do your own Dr. Barnes Basal Temperature Test. (there are several online versions now)

I have devoted countless of hours, scanning through the studies and groundbreaking work of Dr. Barnes, The Father of Hypothyroidism, lol!
  Simply brilliant and way ahead of his time!

Instructions For Taking Basal Body Temperature:
Use an ordinary oral or rectal glass (not digital) thermometer.
Shake down the thermometer the night before, and place it on your nightstand.
The first thing in the morning BEFORE you get out of bed, place the thermometer under your arm for ten(10) minutes.
Record the temperature reading and date right away!
Repeat for 10 days.
Normal Range: 97.6 to 98.2
Averages below that indicate hypothyroidism. (regardless of your labs).

You should get your D3 levels up a bit more and you should rule out neurological B12 (methylocobalamin) and folate (methyltetrahydrofolate-5)
by getting a CSF homosysteine test. The MMA does not indicate this,
even if B12 and folate levels show normal.

Another suspicion would be adrenal fatigue-due to ongoing biological stress- which should be ruled out
before any thyroid treatment(in adrenal fatigue thyroid regulation is very delicate as the adrenals downregulate thyroid function-causing also secondary hypothyroidism.
A functional medicine doctor is best trained -to my opinion- for such diagnosis and its treatment. Conventional endocrinology do not consider adrenal fatigue until it becomes about 90% adrenal failure.

I won't make any other comments until you get this resolved, for the simple reason is that should you have under or un-regulated thyroid function,
the cells do lack the ability to maintain, heal and function effectively.

Hope this helps, however, my comments and suggestions are not intended
as a replacement for medical advice.

Best wishes.
Niko