Hashi's & Graves

[tahoedlp]

I have been battling thyroid issues for about 5 years with a diagnosis of grave's and hashimoto's along with myriad of other problems.  I am taking a new look at it all, trying to educate myself, and am not accepting that my numbers "are fine" anymore.  I don't feel like my endo even listens to me.  For nearly 2 years now, I have a new issue which includes severe chest/upper abdomen pain in which the episodes have literally dropped me to the floor and prompted 911 calls.  These episodes are intermittent and seem to be connected with a series of events that began about a year and a half ago and evolved over a period of months.  I lost over 40 pounds, could not get over strep throat, I developed high blood pressure, bulging Grave's eyes, and symmetrical groups of 3 lumps on my both of my shins, which I have been told is pretibial myxedema connected to thyroid disease.

I have been doctoring steady for nearly 2 years feel awful, and still have no answers.  I am feeling like I need to start all over.  I have had every test and scan imaginable from heart to lungs to gallbladder removal.  I have tested positive for several different antibodies when they were testing for Lupus, but all they say is that they are there and may or may not do something.  A visit to my endo this week stated Hashimoto's on my after visit paperwork...no one has said this in all the years I've been doctoring.  It's always been you are hypo thyroid, take this medicine.  I went searching for a Grave's diagnosis after my regular eye doctor asked me when I was diagnosed with grave's -- I had never been diagnosed and had to ask him what that was!  I really don't feel like anyone has a a grip on my health issues and feel like I have to start over.  I have not felt good for a long, long time and need to take control of my health and my life.  I thought I was being a responsible patient, but have become very overwhelmed with everything that they have done/checked.  I believe my thyroid is responsible for much more than the doctors are giving it credit for and want to focus on that a bit more.  I know something more is wrong and am determined to figure it out.

What tests should I request from my endocrinologist?  

Most recent labs included:  TSH =.85, T3 Free = 2.8, T4 Free = 1.08

I want my life back and I am also looking for alternative options in dealing with this.  Not much faith in western medicine lately...

Thank you for any thoughts!

  

[Barb135]

Wow - you really are still hypo, aren't you?  

The ferritin level indicates that you  have no iron stores; you're going to have to supplement in order to get that level up.  Talk to your doctor about it; you should be able to start with a small dose and increase, as you tolerate it.

Yes, iron has a role in the whole thyroid mess... iron is necessary for the metabolism of thyroid hormones.

[tahoedlp]

I failed to  include the new FT4 result from 9/19.  It was .92, down from .97 on 8/14 (.70-1.85)

I'm tired...

[tahoedlp]

Had another blood draw and TSH actually went up!  17.80 on 8/14 and 18.70 on 9/19 (.3-3.0).  This was after the piddly increase of 37.5 mcg.  Now endo has increased my Levothyroxine to 100 mcg daily and will check again in one month.

Also, there was a Ferritin test:  result was 6 (range 10-300)

I do need to get my iron levels up, but can't tolerate supplements very well.  

I am wondering how iron plays into the whole thyroid mess.  Does iron affect the thyroid, or does the thyroid affect iron levels?  Any thoughts?

[Barb135]

I've never heard of Gaviscon affecting thyroid medication, but I guess it could.  I take it, myself, but never close to when I take my thyroid med, and not very often.  Since you use Gaviscon, is it safe to assume that you have acid reflux?  If so, that's a symptom of hypo and further indication that your med needs to be increased.

I suspected the FT3 might be a typo, but even at that, your level is way too low.

It sounds like your pcp might be better able to handle your thyroid condition than your endo.  Your lab results certainly warrant going up more than 37.5 mcg/week.  Averaged out, that's only 5.35 mcg/day.  Whoopty doo... lol

Your vitamin D is actually relatively low.  I've never seen a range like that; most ranges are 30-100, or similar. It's usually recommended to have vitamin D 50-70.  Low vitamin D levels can cause hypo like symptoms.  

Your B12 isn't bad, but if mine were only 707, I'd be a basket case.  The range my lab uses is 200-1100 and I have to keep my level right at the top of the range in order to feel well.

There is no ferritin test included in the iron panel.   The low saturation index indicates that you might be anemic and warrants a ferritin test.  Since ferritin is the iron storage hormone, if it's low, that would indicate that you have little iron in storage for future use and your iron  level may continue to drop.

With your FT4 so low in its range, I can't see that adding T3, at this point would be helpful.  T3 is, typically, added when one doesn't adequately convert FT4 to FT3.  Your FT4 level is so low, you so little to convert, we don't know if your conversion is adequate or not.  The best thing to do, at this point, is get the FT4 up to around mid range and if FT3 still lags way behind, adding T3 might benefit.  Be aware, though, that FT3 often lags behind FT4 for several months before it gets up to where it should be.

[tahoedlp]

They sure did tank!  Have you ever heard that aluminum hydroxide/magnesium carbonate (Gaviscon antacid) can interfere with the effectiveness of Levothyroxine?  My endo is suspicious that this may be responsible for the abnormalities.  I have been using Gaviscon since about May, but not much in the weeks before my lab tests, so I am doubtful.

My pcp was going to up dosage to 100 mcg,  When my endo saw the lab results, she said 37.5 increase and pcp stepped back and said continue to follow up with endo.  I do think pcp would work with me if I specifically asked again.  She knows I am not happy with endo.  Endo said to have labs drawn again in one month.

Regarding FT3 - I typed wrong.  It should be 2.6 as you thought.  My bad.

750 by TSA is a ghost figure that I didn't even realize was there.  My curser was doing a little jumping and I thought I had corrected the mistyping.

Vit D was 43 (30-75)
B12 was 707 (>210)
Both of those look good.

Iron 54 (35-80)
Iron Binding Capacity 395 (240-430)
Iron Sat. Index 14 (15-46)
Is the ferritin level included somewhere in the above iron panel?  Low iron is not something new to me, but I can't tolerate supplements.  PCP suggested eating more iron rich foods - I can never get it up...

I am wondering if I might benefit from adding T3 to my Levothyroxin?  I am trying to read up on that and learn more.  Any thoughts on that?

Thanks for taking the time to listen and offer thoughts.  I do appreciate it.

[Barb135]

Wow - your levels really tanked, didn't they?  So your endo raised your levo by 37.5 mcg/week...  did she indicate further testing in a few weeks to make sure your levels are coming up?  Like goolarra, I don't have a warm fuzzy feeling about her.

Is there any way you can get your pcp to further increase your dosage?  Your levels are so low, I can't imagine that only 37.5 mcg/week is going to affect them, horribly, if at all.  I'm sure you typed it correctly, but I really must verify that FT3; it's really 0.26, or should it be 2.6?

With thyroid labs like yours, it's not surprising that your lipid panel is high, as well.

I assume that TPA is Thyroid Peroxidase Antibodies?  That level would certainly confirm Hashimoto's.  What's the "(750" for by your TSI?  Positive TSI confirms Graves.

What was your actual vitamin D and B12 levels.  B12 deficiency can cause horrible fatigue, as well. What was your iron level and was there a ferritin test?  Be sure to include reference ranges for all results posted.

[tahoedlp]

Got new test results - finally went to my primary doc and asked her to order a boatload of tests.  Talk about overwhelmed - yikes!  

TSH 17.80 (.3-3.0)
T4 Free .97 (.70-1.85)
T3 Free .26 (2.3-4.2)
TSI 6.9 (750 (no ref range given, just says positive)
Babesia AB IgM <1:20 (<1:20)
TPA 1657 (<35)
Other tests ordered were, Vit. D, Lipid Panel (high), magnesium, iron, iron binding capacity, iron saturation index, CBC w/diff., lymes, Vit. B12, blood culture, and folate.

Asked my endo to look at results and all she did was to increase my Levothyroxin by 37.5 once a week.  Was taking 75 mcg M-Sa and 37.5 on Su, now she has me taking 75 mcg every day.

Any thoughts on this?  My daughter is getting married on Saturday, and I'm tired...

Thanks!

[goolarra]

Sorry, dislexic this morning.  "...FT4 should be a higher percentage of range than FT3 or a conversion issue is suggested"  should be the other way around. FT3 should be higher than FT4 or a conversion issue is possible.

[goolarra]

Your doctor isn't giving me that really confident feeling.  First, she used labs from March, I believe you said.  Now, she isn't going to follow up for a year, which will make it 16 months since you had labs.  And, to top it all off, she's ignoring your symptoms.  Obviously, she's happy with your TSH and doesn't care about anything else.  It might be time to shop for a new doctor.

STTM is a little too slanted for my liking.  I can never quite trust anyone who recommends one therapy to the exclusion of others.  Different approaches work for different people, so you really have to try them for yourself.  Your FT3 in March was a little on the low side relative to your FT4 (FT4 should be a higher percentage of range than FT3 or a conversion issue is suggested).  So, you might benefit from adding a little T3 to your meds.  Some doctors dont like to or won't use T3.  

You can get T3, either by adding a synthetic form or by switching to desiccated, which contains both T3 and T4.  Both have advantages and disadvantages.  

If you check the archives, you'll find hundreds of threads concerning synthetics versus desiccated.  Some are a generic discussion of the two in general, some address one brand over the other.  Lots and lots to read...a very complicated and personal decision.  Some people only feel well on desiccated, but for some, the T3 content is too high.  So, all options may not be open to all patients.

[tahoedlp]

Also, doc did not change dose at all and said one year for follow up.  Ugh!

[tahoedlp]

Regarding Celiac Disease:  I had an endoscopy in March in which a tissue sample was taken.  Test result was negative for celiac.

I've not seen anything on dessicated thyroid in any posts and have been reading the book, "Stop the Thyroid Madness."  Any thoughts on that?

[goolarra]

It would be interesting to know if your Graves' antibodies (TSI) are still active.  

Both FT3 and FT4 are on the low side.  Your FT4 is at 33% of range, and the rule of thumb for FT4 is midrange (50%).  FT3, for which target is upper half of range, is at 26%, so really low.  It looks like you could use an increase.  Your doctor is working from labs that are 4-5 month old.  That's much too old; she should have ordered new ones.  Did she change your dose?  When are you scheduled for follow up?

Has anyone mentioned celiac disease to you?  

"Both IgA and IgG anti-gliadin antibodies (AGA) are detected in sera of patients with gluten sensitive enteropathy (celiac disease). IgG anti-gliadin antibodies are more sensitive but are less specific markers for disease compared with IgA class antibodies. IgA anti-gliadin antibodies are less sensitive but are more specific. In clinical trials, the IgA antibodies have a specificity of 97% but the sensitivity is only 71%. That means that, if a patient is IgA positive, there is a 97% probability that they have celiac disease. Conversely, if the patient is IgA negative, there is only a 71% probability that the patient is truly negative for celiac disease. Therefore, a positive result is a strong indication that the patient has the disease but a negative result does not necessarily mean that they don not have it. False positive results are rather uncommon but false negative results can occur. On the other hand, the IgG anti-gliadin antibodies are 91% specific and have an 87% sensitivity. This means that they will show positive results more readily but there is not as strong a correlation with celiac disease. It is less specific. Patients with other conditions but not afflicted with celiac disease will occasionally show positive results. IgG anti-gliadin antibodies are detectable in approximately 21% of patients with other gastrointestinal disorders. This test might yield false positive results but is less likely to yield false negative results."

Do you have any symptoms of gluten intolerance?  It's true that antibodies can be present for years, or even decades, before they do enough damage to cause symptoms (or they might never), but their presence can't be ignored, either.

Once we have one autoimmune disease, we are more likely to develop more than the general population is to get its first.  No one knows if one causes the other or if it's perhaps a genetic tendency.

Antibody tests for Hashi's (yes, a blood test) are TPOab (thyroid peroxidase, sometimes called microsomal on lab reports) and TGab (thyroglobulin antibodies).  Could someone already have run those prior to your current doctor?  Or might she have run them previously?

One caution when interpreting antibody tests:  Antibodies are very specific, i.e. TPOab and TGab cause Hashi's and nothing else, IgA and IgG cause celiac, etc.  However, TPOab and TGab can be "somewhat" (a term that is seldom defined) elevated with other autoimmune conditions (and that applies, I'm sure, to other antibodies as well).  So, it's important to look at the actual results and compare them to other people's levels on diagnosis.    

[tahoedlp]

FT3 ref range:  2.3 - 4.2
FT4 ref range:  0.70 - 1.85

Currently taking Levothyroxine:  75 mcg Mon-Sat, 37.5 mcg Sun

Yes, I HAVE been diagnosed with Graves' Disease - after I questioned it with my endo after that eye doctor visit.  I have seen 2 specialists for Graves' Orbitopathy.  One suggested decompression surgery which I opted NOT to have.  Sounded too extensive and too risky so I live with the "buggy" eyes.

Endo did not order any lab work this last week.  She went off of March labs that primary doc did when in for another issue.  She did not do any antibody testing which I assume would be a blood test also??  She did order a thyroid ultrasound which I had done on Friday.  Concern was increased goiter on right side.  

Not sure if this is relevant, but I have tested positive for several antibodies over the course of my journey, these while they were ruling out Lupus...  I tested positive for the ANA and Double Stranded DNA antibodies.  There were more, too, IGG and IGA antibodies (? I think ?)  I would have to dig a bit to verify those.  The only explanation Mayo Clinic could give was that they don't know where the antibodies come from or why they are there and that they may be there forever and never do anything.  I can't help but think that all of this is related in some way??

Thanks!