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Hyperparathyroidism, low T3 conversion or autoimmune?

Hello. I have experienced a multitude of symptoms for years with my biggest complaint being extreme fatigue.  It is life altering and if I can muster to get through big events, I am unable to function for days.

I've been tested for everything, thyroid, autoimmune, Lyme but mostly everything is normal.

I've suspected thyroid because I am one of the lucky ones that gains weight and can't lose and hypothyroid is really the only possibility based on my tests that doesn't cause weight loss.

Other symptoms -- constipation, hair loss, irritability, tingling (hands and feet and even nasal/face more recently), dry skin, eye issues (dryness and tearing (think inflamed tear duct, comes and goes), forgetful, unfocused.  There are more, but these are main issues.

I've had low vitamin D (9),  borderline low bit b12 (210), high ANA from 1:80 to 1:640 with NO other autoimmune test positive (tested for RA, sclero, sjorgens, autoimmune thyroid etc).

My TSH is typically around 2, but occasionally 1.6 with my last TSH (with reflex to T4) the lowest EVER in 10+ years at 1.23 (not sure if this is the reg TSH test or if the reflex is different and that's why the result is unusual).

My last FT4 was 1.1 and my last FT3 was 2.7 with a RT3 at 17.  My TSH at this time was 2.0. This made my T3 /RT3 ratio at just under 16, which upon reading thought might explain symptoms, but doc says my results are all normal and true they are all in the normal range.

Finally, I have two serum calcium readings at 10.0 and 10.1.  I also had a flagged high urine calcium oxalate at the same time.  I questioned this but my doc told me that they were fine b/c my albumin level was above 4 so that meant the calcium was actually lower.  Is that true?  

I found parathyroid.com when searching low Vit D and high urine calcium.  It says calcium should be in the 9s if you're over 35 but I can't find anything about adjusting the reading for albumin so don't know if that's already accounted for.  Strangely, even the reading I had for calcium that was 9.8, my albumin was exactly the same as when it was 10 and 10.1.  Shouldn't the albumin change if the calcium changes?

The other thing that is new is I've started having high blood pressure, which I've never had.  Most often it is high systolic, but can be both.  I have a physical in a few months so will see what my doc says about that then, but since this is new and I have no idea why, just though I would mention it.  

I don't care what it is -- autoimmune, thyroid, parathyroid but I feel like I keep throwing things at it without really knowing.  I've taken Vit D, B12, plaque nil.  I've stopped for about a month or two as I just want to see where my own body takes me.

Any suggestions where now?  Thanks for reading this and I appreciate any thoughts.

LP
17 Responses
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Avatar universal
Yes, hypothyroidism or hyperthyroidism can affect your cycle.  I an not aware of anything done by Julia Ross, but I would spend my energy on finding a good thyroid doctor first.  
Helpful - 0
Avatar universal
Thanks Gimel.  I had to go out of town so I haven't had a chance to explore doctors yet.  I did get my gyno to run some perimenopausal panel since in 3 months I still haven't gotten my period.  My FSH is high at 53 suggesting menopause and my estadiol is actually up to 93 not suggestive of menopause -- so perimenopausal.

Not sure that that sheds any light on what's going on.  Does hypo or hyper affect your menstrual cycle?  I just can't figure  why I'm such an enigma and feel like cr**.

On a side note, have you ever heard of the diet cure or the mood cure by Julia Ross?  I'm thinking about trying some of the suggestions since I can't get any help.  I just don't know if there's a down side or if it will complicate things if I find one of these doctors you suggested who will help.  I'd love to know if you have any insight on the premises in her books.

Thanks so much for the guidance and just listening.

LP
Helpful - 0
Avatar universal
I just sent you a PM with some doctor names.  

When you go to the doctor they will insist on testing as they want it.  So, I think it would be a waste of money right now.  So make sure they test for Free T4, Free T3 (not Total T4 and Total T3), TSH, Vitamin D, B12, and ferritin.If you can talk the doctor into testing for cortisol that would also be a good idea.
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Avatar universal
Hi Gimel,

Thanks for the feedback.  Its so strange how everyone here seems so knowledgeable or at least willing to accept that people know HOW they feel (terrible), but that doctors just keep saying normal.

I'm getting ready to do some territory training into the new year and will be primarily in SW CT or Westchester, NY so depending on how quickly I can get an appointment, these are the preferred starting places.

Thank you so much again.

Would you advise doing my own testing now or waiting?

LP
Helpful - 0
Avatar universal
With central hypothyroidism, there is a dysfunction in the hypothalamus/pituitary system that causes the TSH to be in the lower part of the range, and thus it never stimulates the thyroid gland to produce enough hormone.  So your Free T4 (and Free T3, no doubt) stays in the lower part of its range, consistent with being hypothyroid.

I have names of a number of doctors in those areas, all recommended by other thyroid patients.  Why don't you tell me your first and second choices for places to go and see doctors.  Then I can give you some names.  

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Avatar universal
Hi gimel and all,

Thanks.  I'm in the Northeast and could do NY, NJ, CT, MA.  

I had such hope because she treated the friend of a friend with T3 and she felt so much better but then again she had her thyroid removed (not cancer).  I have read up so much on thyroid I actually cringed when my friend told me that.  Even with all this reading I still can't figure out what my results ever mean.  My TSH never goes above 2 and for the past 10 years hasn't really dipped below 1.8, but now it's been in the low 1s, regardless my FT4 is always 1.1.  Shouldn't the FT4 go up if the TSH goes down that much or is it just that it takes more time?  I thought I understood that there are more regular fluctuations.  I just don't get it.  

I think I'm going to try to find a naturopath and maybe see if I can locate a compounding pharmacy for a name.  I feel like they won't tell me but I'll give it a try.  

And in the meantime I think I will order my own blood tests so I can get them all.  It really makes me mad, though, because we pay nearly 30,000 a year for family medical insurance and I have to go foot the bill.  Maddening.

Anyway, if you can shed any light on the FT4 not budging and have any names in the NE, I would be grateful.  I'm tri-state but my job takes me around do I could probably coordinate  CT, NY or NJ pretty easily.  Thanks again.

LP
Helpful - 0
Avatar universal
What a monumental waste of time that doctor is.  You have many symptoms indicative of being hypothyroid, plus your Free T4 and Free T3 are too low in the range.  I explained how the range is erroneous.  And you need to test and supplement Vitamin D, B12 and ferritin as needed to optimize.

Most of all you need a good thyroid doctor.  If you will tell us your location, perhaps we can suggest a doctor that has been recommended by other thyroid patients.  

Helpful - 0
Avatar universal
Hello again,

Sorry, been away for awhile, but finally had the appt with my new doc that I have been waiting for 6 months for.

Should have run.  She told me that the TSH is the only relevant thyroid test and if it was normal, no need to test anything else.

After discounting the RT3/T3 ratio, the low in range FT3 and FT4, she told me to lose weight and I would weigh less and be less tired.  Thanks, big help.

She ran some blood tests, much to my surprise she ran a TSH and FT4, and then tried to cancel.  Long, annoying story.

But they left a message and said all my tests were normal.  Hooray.

I called and asked for actual numbers.

TSH  1.16 --- lower again and never been this low until the last few months
FT4   1.1 -- this is basically where the FT4 is always give or take 0.04

Guess it's okay that the FT4 doesn't ever seem to budge.  No idea about FT3 because that is totally unnecessary.  All I know is I'm just so tired.

I need to regroup and try to put my hope somewhere else.  Where?  Don't know yet.

Any thoughts on why the FT4 doesn't budge?  Any other causes besides thyroid?

Bless you all for even still listening.

LP
Helpful - 0
Avatar universal
Following are some answers to your questions.

"The Acid Reflux-Thyroid The Acid Reflux-Thyroid Connection
In short, there does appear to be a connection between hypothyroidism and acid reflux. An under-active thyroid can lead to LES (lower esophageal sphincter) dysfunction and hiatal hernia, which may lead to acid reflux and GERD.

Some medications like Prilosec (used to treat heartburn) suppress stomach acids, allowing the H. pylori bacteria to thrive. This causes chronic gastritis in some patients, which further reduces stomach acids and can cause even more chronic heartburn for sufferers.

2.  Yes, with your calcium testing in the 10 range, along with very low D, I would certainly ask for a PTH test, even knowing that it is not an totally reliable test.  

3.  Following is one of numerous links on hypothyroidism and high blood pressure.

https://lexi.com/individuals/dentistry/newsletters.jsp?id=may_08

Also, following is the section on heart related symptoms, taken from a very long list of symptoms that can be related to hypothyroidism.

Heart:

    High blood pressure
    Low blood pressure
    Slow/weak pulse (under 60 bpm)
    Fast pulse (over 90 bpm at rest)
    Arrhythmia (irregular heartbeat)
    Skipped beats
    Heart flutters
    Heart palpitations
    Chest pain
    High cholesterol
    High triglycerides
    High LDL (“bad”) cholesterol
    Mitral Valve Prolapse
    Atherosclerosis
    Coronary Artery Disease
    Elevated C-Reactive Protein
    Fibrillations
    Plaque buildup
    Fluid retention
    Poor circulation
    Enlarged heart
    Congestive Heart Failure
    Stroke
    Heart Attack

Helpful - 0
Avatar universal
Thank you again for your help and input.  I have a few other seemingly random questions I'm trying to sort out, if you all wouldn't mind sharing your thoughts.

1.  Why does low stomach acid cause reflux?  Seems counter.
Could explain my B12 issue.  Also I get treated for restrictive airway disease every time I get a cold.  I don't have asthma, but I need an inhaler b/c I cough so much I vomit.  I read that this might actually be reflux and not restrictive airway...just pondering this.

2.  Is a PTH worth pursuing?  My calcium isn't that high.  Also, do you know if it is true that I should be adjusting the level based upon Albumin?  Is the threshold they use of 10.1 already adjusted for albumin or they don't care?  I can't find a clear answer to this.  But this seems like grasping at straws, since I just want to feel better.

3.  How is BP affected by thyroid?  I apologize if you explained, I just don't understand and it is so strange how nothing has changed and out of nowhere I have high BP.

I'm sure I'll have more questions so thank you in advance for taking the time to answer them.

LP
Helpful - 0
Avatar universal
Forgot to respond to your question about acid reflux.  Hypo patients are typically low in stomach acid which can cause the so-called acid reflux.  At one time when my med, Armour Thyroid, was not available, I had to go back on T4 and I became hypothyroid again.  During that time I had a number of hypo symptoms, including bad acid reflux.  On T4 med I did not adequately convert T4 to T3 so my Free T3 was too low in the range.  As soon as Armour was available again I went back on it and in only 3 days, as I remember, the acid reflux was gone, due to the effect of T3 in Armour raising my Free T3 level.  .
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Avatar universal
I agree with barb about central hypothyroidism.  In order to get necessary thyroid med you need a good thyroid doctor that will treat clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  Also be aware that with central hypothyroidism, taking thyroid med will most likely cause your TSH to be suppressed.  That will not mean you are hyper, since you will not have hyper symptoms due to excessive levels of Free T4 and Free T3.  I mention this only because many doctors don't understand this and immediately want to reduce med dosage when TSH is suppressed.  

If your current doctor is willing to treat clinically, then I would work with that doctor.  Even if the doctor is open to learning about clinical treatment, then you can provide copies of info such as this link written by a good thyroid doctor and try to get treated clinically.  If neither, then you will need to find a good thyroid doctor that will treat clinically.

http://www.hormonerestoration.com/Thyroid.html

Vitamin B12 needs to be in the upper end of its range.  You also need to find out your ferritin level and supplement as needed to optimize.  Should be about 70 minimum.  Low levels can cause symptoms that mimic some of hypo symptoms.  Also low ferritin can adversely affect metabolism of thyroid hormone.   D is also important, but I agree with you about supplementing Vitamin D.  I would also defer until assuring no problem with hyperparathyroidism.  Although frequently not definitive, have you had a PTH test?  
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Avatar universal
Thanks gimel.  What would you recommendaton be then?  Requests more tests?  Just take the new doc the tests I already have?  Any additional tests to help?

Also, should probably have mentioned that in addition to the new high BP, I have been getting acid reflux or indigestion, which I've never had in my life.  Probably noticed around the same time my BP was high, although not saying that they were related as my BP could have been high for several months for all I know.

Does the acid indigestion point to anything with the other symptoms?

Thanks.
LP
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Avatar universal
In the words of a good thyroid doctor, "The free T3 is not as helpful in untreated persons as the free T4 because in the light of a rather low FT4 the body will convert more T4 to T3 to maintain thyroid effect as well as is possible. So the person with a rather low FT4 and high-in-range FT3 may still be hypothyroid. However, if the FT4 is below 1.3 and the FT3 is also rather low, say below 3.4 (range 2 to 4.4 at LabCorp) then its likely that hypothyroidism is the cause of a person's symptoms."
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Avatar universal
Thanks for your replies.
I have taken b12 and Vit d3 for years with no symptom improvement. I stopped the Vit d a couple of months ago b/c I thought it might be causing the high calcium.

My TPO  was negative, no value given, so I assume nothing was seen.  I've had every rheumatological test and EVERYthing is negative except the ANA, which has only gotten to 1:640 but tends around 1:160.
Pernicious anemia was ruled out with an mma level.  
My TSH has been around 2 give or take for 10+ years.  My FT4 has ALWAYS been 1.1.  I have at least 7 tests over 10+ years and it has always just been 1.1.  My FT3 has been around 2.7, but I have only a handful of these.
12 years ago my doc did a total t3 and a t3 uptake.  The total was flagged HIGH and the uptake was flagged LOW.  Doc didn't know what that meant so said it was all normal.  These are outdated tests and I have no idea what they mean.
So my last tests (all same time):
TSH. 1.92.   0.4-4.4
FT4.  1.1.     0.8-1.8
FT3.  2.7.     2.3-4.7
Single, most recent TSH (with reflex) . 1.28.   0.4-4.4
In 10+ years I've never had a TSH lower than 1.8, so not sure what that is.  My BP is usually 120/70-130/80. But I got a 155/95 at doc and at home it's consistently high, esp. the systolic.  
What other tests should I have?  How do you rule in/out central hypo (I have no idea what this is, so I will read up).
I'm seeing a new doc in a few weeks so I'd like to make my case, support it, and get any additional blood work/tests.

Thanks for your help.
LP
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
How about posting the thyroid antibody tests that came back normal... The fact that you had a positive ANA test indicates that there's an autoimmune issue going on somewhere in your body, whether it's thyroid or something else. Have you been tested for MS, Lupus, etc?  Of course, it could all lead back to the B-12 deficiency which could be Pernicious Anemia, which is also an autoimmune condition... Still would like to see those thyroid antibody results.  

Have you had a Parathyroid hormone test done?  If you have high calcium and high PTH, that could indicate parathyroid condition, in which case, vitamin D supplementation may be contraindicated.

You should be aware that TSH w/reflex is an outdated test and there's really never a reason for it to be ordered anymore... What it is, is an order for the lab to test TSH and if that's in range, don't do any more testing, but it's out of range, go ahead and test Free T4... Your doctor should "always" test Free T3 and Free T4 with every TSH.

Your symptoms all indicate hypothyroidism, including the new high blood pressure.  The problem is that we'd expect your TSH to be higher with FT4 and FT3 levels as low as yours.  This is an indication that you could have Central or Secondary hypothyroidism, which is often missed by doctors, because of the normal TSH...  With Central hypothyroidism, the thyroid works fine, but there's an issue with the hypothalamus/pituitary axis, in which the pituitary gland is not producing adequate TSH to stimulate the thyroid gland to produce enough thyroid hormones.  If the doctor is only looking at TSH or looking at levels that are "in range", this will be missed quite easily...

IMO, you have more than one thing going on, including the B-12 deficiency.
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Avatar universal
if your vitamin d and b12 is low you should start supplementing for that till it come in normal ranges. much of the symptoms like tingling all is caused by b12 deficiency.

please quote the ft3 ft4 and tsh with given reference range as it can vary from lab to lab.

from your given ft4 and ft3 levels it seem you have fine t4 and a low ft3 which says you have t4 to t3 conversion issue. my be low b12 the reason.
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