Watch and wait?

[Serenapuff]

Wondering if my endocrinologist is taking the right approach by watching and waiting to see what my thyroid is going to do next.  I was diagnosed in 1999 with Hashimoto's and have been off and on meds over the years depending on TSH fluctuations.  I have a new endocrinologist who is not clear about a diagnosis.  I am not on meds currently and here are my latest results.  I have both hyper and hypo symptoms over the years but have never been hyperthyroid on any test.  I have had tests that indicate hypothyroidism and was treated by my former endocrinologist who originally diagnosed Hashimoto's. Currently, I have many hypo symptoms.

TSH: 4.29   H (.27-4.2)
FT4:  1.1      (.9-1.8)
TPO:  226    H (<9)
thyroglobulin antibodies 2  H (<2)
TSI:  99%     (<122)

My new endocrinologist is not eager to treat "subclinical hypothyroidism" unless the TSH is well above the normal range.  She feels that as long as my FT4 is in the normal range, no treatment is necessary and any symptoms are unrelated to my thyroid. She is not willing to diagnose me with Hashimoto's but has ruled out Graves with the negative TSI.  She explains that my thyroid is healthy/functional and we will watch to see if that changes over the years.  I also have two nodules that are screened via ultrasound annually that we are watching as they very slowly increase in size.  

Is my endocrinologist taking the right approach in my situation?  It's all very confusing.  Thanks for any thoughts!

[Serenapuff]

I think for some people, joint hypermobility can be the tip of the iceberg while for others it's pretty benign.  Hoping we fit in with the benign group!  Connective tissues are everywhere so I shouldn't be surprised that problems can manifest all over the body.  Thanks for more great info Red Star!

[Red_Star]

I have four autoimmune diseases and had a 25 cm ovarian cyst. I found a very interesting article entitled: Joint Hypermobility: Red flag for Gene-Based Chronic Disease Cluster. Here is an excerpt...

"Patients with joint hypermobility are very likely also suffering from a cluster of other chronic conditions that warrant close clinical attention.          

While Ehlers Danlos Syndrome (EDS) and Marfan Syndrome may be the most dramatic and obvious examples, there are many other people with hypermobile joints that do not match these diagnoses. Scratch the surface in these cases, and you will often find a complex constellation of symptoms.

These include: Mast cell disorders, chronic fatigue/myalgic enchephalomyopathy, postural orthostatic tachycardia, circulatory and blood clotting abnormalities, chronic bowel disorders, post-traumatic stress, sex hormone and adrenal imbalances. Women with hypermobile joints show higher prevalence of gynecological conditions such as endometriosis and ovarian cysts, as well as autoimmune diseases. In a sense, joint hypermobility could be considered a sentinel signal for other systemic diseases. What’s the connection?

A new theory forwarded by Dr. Sharon Meglathery posits that hypermobility and the associated systemic disorders are linked to an anomalous gene cluster on chromosome 6, known as RCCX."

[Red_Star]

My eye issues resolved with thyroid medication. I have joint hypermobility as well. I just read a blog saying people who are hypermobile have fast neural connections. That is interesting as I have very fast reflexes. I found out how fast playing Nintendo switch lol.

[Serenapuff]

Thank you Red Star.  I have been monitored for Sjogren's but blood work is negative which I am told is true for 40% of sufferers.  Did your dry eye improve with proper treatment?

I am familiar with chiari and CCI having researched EDS for my Mom.  Never knew joint hypermobility led to these odd issues.  Hoping for some answers next week when I see the geneticist.

It makes so much sense to optimize the thyroid function.  It seems odd to wait for destruction to occur but that seems to be the approach with this endo.

[Red_Star]

I had dry eyes with untreated hashimoto's thyroiditis. And my dry eyes caused excessive tearing.  You mention you could not produce any tears which fits in with a possible diagnosis of Sjogren's syndrome (also linked with Hashimoto's thyroiditis). One of my other symptoms of hypothyroidism was postural hypotension (caused me to become dizzy when standing up). And I don't even have POTS. :)

Joint hypermobility can cause cranial cervical instability leading to a condition called Arnold Chiari Malformation. This is where the brain is herniating into the spine (although you can have Chiari zero - no herniation - since it's not the length of herniation but the blockage of spinal fluid that is causing the symptoms). A CINE MRI (cerebrospinal fluid flow study) would pick up Chiari zero. Sjogen's, EDS and Arnold Chiari Malformation are all listed possible causes of dysautonomia.

I found an article entitled - "Multiple sclerosis, Dysautonomia, you name it…ALL made worse from hypothyroidism or being on a T4 med".  Here is an excerpt (and to add I do very well on T4 only medication but some find they do not)...

"...turns out I have a form of Dysautonomia, a malfunction and overreaction of my autonomic nervous system, causing my body to far overreact to activity or stress. But remaining hypothyroid, as so many of us do on t4-only medications, had made it far, far worse. And I proved it. When I switched to natural desiccated thyroid in 2002 and raised it according to what patients have learned, a miracle occurred.  My severe autonomic reactions made an almost complete turnaround.

And my experience of change or improvement when it comes to other diseases or conditions has been shared by others.

Last week, I received an email from a man whose brother has MS–Multiple Sclerosis.  And though natural desiccated thyroid has not taken his MS away, it allowed him to move from this wheelchair to a walker! That is quite impressive.

So I am left wondering:  what other conditions or diseases, which are unique in themselves, are worsened being either undiagnosed or dosed the lousy TSH lab test range…or due to the inadequate treatment of Synthroid, Levoxyl, levothyroxine, Eltroxin, Tirosent and all other T4-only medications for all to many like myself? It’s awful to think about it."

[gimel]

I just sent you a PM with some info.  To access, just click on your name and then from your personal page click on messages.  

[Serenapuff]

The symptoms that I relate to being in a hyper state were unintentional weight loss, nausea, palpitations, insomnia, chronic Tachycardia (even in a resting state unlike my POTS Tachycardia which is ), heat intolerance (I still have this but it is not as extreme), GI upset, sweating, feeling like I drank too much coffee/restless and fatigue but not like hypo fatigue--just as if every system were working overtime.  This hyper feeling phase lasted for about six months.  My doctors were stumped as my thyroid checked out normal both on and off my meds.  They tested for sarcoma and pheochromocytoma in case I had a tumor somewhere but all my labs were normal.  They couldn't figure it out for over a year and a half when the cardiologist put some unrelated things together and figured out the POTS.  But I'm not so sure that was the explanation for my craziness?  You are correct in that my doctors only checked TSH and free T4 all along.  I convinced my endo to test my TSI just bc of the hyper symptoms--could I have both antibodies wreaking havoc? She doubted it. She agreed but it was unfortunately a year after my hyper symptoms had subsided. I still managed my life ok so there was no real worry to them, only to me who does not enjoy the new "normal".  I agree that my thyroid should be at an optimal level of functioning--yes!  You are right on! Perhaps that would indeed help my POTS.  But again, the doctor is not on board.  I am in the Boston area by the way. Thanks for your support!

[gimel]

You mentioned some hyper symptoms in the past.
Besides your mention of tachycardia, what others did you have?  Something else to take note of is that tachycardia can also be caused by hypothyroidism.  Any truly hyper symptoms could have been due to the Hashi's damage to the thyroid gland causing leakage of hormone faster than normal during that phase.  
I expected that the Endo was one of the rigid types that won't even consider anything beyond their standard of care, inadequate as it frequently is.  If you will tell us your location perhaps we can suggest a doctor in your area that has been recommended by other thyroid patients.  

[Serenapuff]

Thank you for the helpful link--I spent the day reading as much as I could.  I have certainly spent the last few years working to figure out how I can feel better but I continue to feel symptomatic.  I really appreciate your time in explaining everything.  I have dealt with VitD deficiency so I am ok with that, B12 is in mid to upper range now and ferritin is a constant battle leading to restless leg syndrome when it drops to the lower range.  It is frustrating working with the endo as she truly is a numbers lady, informing me right away that she would not put me on treatment unless my TSH is very high and my FT4 is very low.  She won't budge, particularly since I deal with Tachycardia.  She feels the meds will make it worse.  The funny thing is I am pretty certain I have had POTS symptoms for as long as I can remember and they only got significantly worse when I went off my thyroid meds.  I meet with a geneticist next week (it's been 6 months waiting for this appt) who will help me figure out if my POTS might be due to Ehlers Danlos Syndrome.  My Mom has EDS and while I have hypermobile joints, I do not have the problems that she has but I am told that POTS is common with EDS.  My rheumatologist has ruled out all connective tissue disorders though it is suspect that I may have sero negative Sjogren's which is another common cause of POTS.  But my endo refuses to recognize any link between my thyroid issues and possible worsening of POTS symptoms.  I'm stuck right now but hopeful for possible answers and guidance from the geneticist next week.  I have read a great deal of controversial topics regarding the thyroid.  I have questioned my endo about dry eye related to Hashimoto's and low free t4--brought her an article from the journal of ophthalmology linking the two and she dismissed it.  I do deal with significant dry eye issues and make zero tears when crying which suddenly happened when I stopped the thyroid meds.  She does not believe the two are related.  Obviously, she would not be open to any literature I suggest, particularly if it goes against her method.  I'm stuck.  I really appreciate your time and effort with my question!

[gimel]

If you have had a chance to do any reading in the link I gave you it makes clear that hypothyroidism is an inadequate supply of, or response to, thyroid hormones throughout the body.  Doctors have been trained and like to believe that TSH is basically all that is needed to diagnose and treat a hypothyroid patient.  That is very wrong.  TSH is a pituitary hormone, not a thyroid hormone.  TSH has only a weak correlation with the biologically active thyroid hormones, Free T4 and Free T3, and has a negligible correlation with symptoms, which are the patients' concerns.  Even after being diagnosed with Hasi's and with your TSH above its range, the doctor then used "Reference Range Endocrinology" and told you that since your Free T4 was in range, she didn't want to treat you, totally ignoring your many symptoms that are so frequently related to being hypothyroid.  

Your thyroid function is not "healthy/functional"  after so many years with Hashi's.  Yes, your TSH is in the so-called subclinical range.   So what?  TSH is totally inadequate as a diagnostic for thyroid status, unless at extreme levels.  Your thyroid status is essentially a function of thyroid hormone levels tissues throughout the body, plus the effect of a few other variables that affect that metabolism of T3.  There is no direct measure of this tissue thyroid effect, so indirect (surrogate) measures are necessary.  The best of those is symptoms, followed by Free T4 and Free T3.  Your symptoms were ignored, and you weren't even tested for Free T3.  Your Free T4 was at the bottom of its range, which is far too broad due to the erroneous way the range is determined.  This is explained in Item 3 on page 4 of the link above.  So being at the low end of that flawed range is inadequate, and treatment should have already been started.  

The effect of those flawed ranges for FT4 (and FT3) show in the following quote from an excellent 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."

Hypothyroid patients are frequently deficient in Vitamin D, B12 and ferritin, so those should be tested and supplemented as needed to optimize.  D should be at least 50 ng/mL, B12 in the upper end of its range, and ferritin should be at least 100.

So what you need most is a good thyroid doctor, which we find to be relatively few in number.  By that I mean one that will test and adjust Free T4 and Free T3 as needed to relieve hypothyroid symptoms, without being influenced by resultant TSH levels.  Good thyroid doctors are also willing to prescribe T3 type meds if the patient's body is not converting T4 to T3 adequately.   Symptom relief should be all important, not just test results.  From what has transpired to date, I doubt that your Endo will be the good thyroid doctor you need.  You could try to influence your testing and treatment by giving her a copy of the link and asking her to treat clinically, as described.  Alternatively, if you will tell us your location perhaps we can suggest a doctor in your area that has been recommended by other thyroid patients.  

Regarding the POTS, it occurs to me that some of those symptoms are sometimes related to hypothyroidism.  So since you clearly are hypothyroid, it seems that should be your first priority and after being adequately treated, it will be interesting to see what symptoms remain, if any.

[gimel]

I have to leave shortly and will be out for a while, but will respond fully at that time.  Also, need to review POTS to make sure I understand about that.  

For now, I will tell you that the Endo is following the usual standard of care, but it is totally inadequate.  Also, if you have a minute, have a look at the following link while I am gone and then we can discuss further.

http://www.thyroiduk.org/tuk/TUK_PDFs/The%20Diagnosis%20and%20Treatment%20of%20Hypothyroidism%20%20August%202017%20%20Update.pdf

[Serenapuff]

Thanks so much Gimel!

[gimel]

You are definitely not getting what you need and there is much to discuss, but first please tell us the symptoms you are having.  

[Serenapuff]

Thanks Gimel.  Things are confusing for me because I always thought particular symptoms were from Hashi's but I am recently diagnosed with Postural Orthostatic Tachycardia Syndrome so my endocrinologist believes my symptoms likely relate to dysautonomia.  But when I unknowingly had what might cardiologist thinks was the POTS flare, we thought it might be hyperthyroid since I was ill with weight loss, palpitations, Tachycardia, sweating, insomnia, nausea but thyroid checked fine on meds and endo told me to stop meds and we would watch thyroid. It has been 2 1/2 years off meds. So thyroid stayed normal range slowly rising to where it is now--slightly out of range.  I was diagnosed with POTS last year only told to increase fluids and salt and continue exercise regimen and small frequent healthy meals. Needless to say, I don't feel well but I get through each day.  So the POTS adds a huge amount of confusion regarding symptoms.  Though I still have POTS, my symptoms have reversed to more hypo symptoms of weight gain, low energy, fatigue climbing stairs, hypoglycemic symptoms...still have insomnia and Tachycardia but only when upright...not all day/all night like before.  So endo strictly looks at the bloodworm and tells me thyroid looks fine.