Thyroid or pituitary?

[Nativelaw]

Hi, new to this forum.  I have suspected hypothyroidism in myself for a long time based upon unexplained weight gain averaging 10 lbs/year.  I have been on a gluten free diet since the fall and limited any sugar, eliminated diet soft drinks and diet sweeteners other than stevia, kept carbs down, etc. and have not lost weight.  I gained 20 lbs within a very short period of time on an antidepressant (like 2 months) with no change in diet so went off it immediately as my reason for asking for the prescription was related to stress, not depression, I really didn't need it, and the additional weight gain was horrendous.  But I haven't been able to lose the extra 20 and gained even more since.  I have a sister dx'd with Hashimotos who has been on medication for years.  So I finally got some testing done.  I have been pronounced as having no evidence of thyroid disease.  But I am sure that there is something going on with my body.  My test results:  TSH 2.95; free T4 .97; Free T3 3.0; and both TgAB and TPO antibody tests were within normal limits.    I was thinking that my TSH may show symptom of hypothyroidism even being within the current "normal" range since there is some thinking that it shouldn't really be above 2.5.  But I have read some things that suggest that because my T4 is on the low end of the range the issue may be pituitary gland rather than thyroid?  Any thoughts, as well as any recommendations for a good thyroid doctor in the Hudson Valley NY area who won't automatically dismiss any issues based upon these test results, would be appreciated.

[Nativelaw]

Thanks so much.   It sounds like the blockage that goes on with thyroid and the need to test RT3 is a lot like the blockage of Vitamin D absorbtion (25OH) which is why I got the 1,25 test also to see if the active hormone was high in spite of the 25D being low.  Unfortunately my current doctors do not do the RT3 test.  But it sounds like either way I will want a therapeutic trial.  Thanks so much for the help!  And I will get the iron tested, too (all 4 tests).And as for the B12, it was 488 on a scale of 239-931 so I will see if I can find a good B12 supplement also.

[gimel]

You obviously have symptoms that have causes that need to be identified.  So let me just mention some of the things that strike me as needing further testing/treatment.  Vitamin D was very low and you have supplemented heavily.  But, what is your current level and if it isn't up near the middle of the range, it is too low.  Also, even if B12 is within the range, it frequently isn't adequate until high in the range.  And don't forget ferritin, as an indicator of iron levels, also needs to be well up in its range.  

There are a number of things you described that, along with limited test results, sound like hypothyroidism.  So I think it would be a good idea to try and get a therapeutic trial of thyroid med.  

The reason I mentioned Reverse T3 was that tissue (cellular) thyroid levels don't always reflect serum thyroid levels.  If interested, you can do some reading on this site, and maybe make use of the info with your doctor.  Following the link is a quote from the site.  

http://nahypothyroidism.org/thyroid-hormone-transport/

"Thus, a high reverse T3 demonstrates that there is either an inhibition of reverse T3 uptake into the cell and/or there is increased T4 to reverse T3 formation. These always occur together in a wide range of physiologic conditions and both cause reduced intracellular T4 and T3 levels and cellular hypothyroidism. Thus, reverse T3 is an excellent marker for reduced cellular T4 and T3 levels not detected by TSH or serum T4 and T3 levels. Because increased rT3 is a marker for reduced uptake of T4 and reduced T4 to T3 conversion, any increase (high or high normal) in rT3 is not only an indicator of tissue hypothyroidism but also that T4 only replacement would not be considered optimal in such cases and would be expected to have inadequate or sub-optimal results. A high reverse T3 can be associated with hyperthyroidism as the body tries to reduce cellular thyroid levels, but this can be differentiated by symptoms and by utilizing the free T3/reverse T3 ratio, which is proving to be the best physiologic marker of intracellular thyroid levels (see Diagnosis of low thyroid due to stress & illness Graph)."

Please keep us tuned in to your progress and we'll be happy to help with interpretation of lab results or whatever.

[Nativelaw]

Thanks!!!  You have been extremely helpful.  I will get the iron checked; the Vitamin D, they want to wait and do again when I've finished the rx, in about another four weeks.  My b12 was within normal limits. They wouldn't do the reverse T3, I did ask.  (they did do the active 1,25  D though, which surprised me! which was normal in spite of my regular D being low.  

I have sort of taken matters into my own hands again, insofar as I just bought a bottle of dessicated thyroid from Nutri-Meds.  I know this kind of thing is frowned upon, and I will use it very cautiously, but my current medical plan limits me to this one (very large) group of medical practitioners and I know I am not going to get even the endo there, to pay much attention, short of walking in with a volleyball-sized goiter or TSH way off the charts.  That's how I ended up doing my own homework on the lyme.  So I want to see if this Armour-like OTC makes a difference.  I am sensitive to the heart-racing, etc. signs of too much and will be careful.  My heart is strong (I had that tested very thoroughly) and I think I will be ok.  Worst case scenario it will do nothing and I'll turn to some other way to handle things, like finding a good doctor that I can somehow afford, off plan.  I appreciate the other tips; I have always, notoriously, been low body temp for my "normal" (I have never been 98.6; all my life i've been around 96-97-- which was why, when I first got lyme last year and had a 104 fever, I knew there was a problem.)

Thanks again for so much help.  

[gimel]

Wow, you have really been through it with Lyme.  

I have been compiling a list of member recommended doctors for over 4 years, but the only two I have in NY are in the city and on Long Island.  Not sure if that would be worth the long trip.  As an alternative, please have a look at this list of Top Thyroid Docs in New York.  This list is not always accurate, but it is far better than starting from scratch.  I always read the patient reviews and look for evidence that a doctor will treat clinically by testing and adjusting Free T3 and free T4 to relieve symptoms.  Also look for mention that the doctor will prescribe T3 meds.  If there are some near enough to you to be of interest, then you could call and try to get a nurse to answer those 2 questions, about clinical treatment and prescribing T3 meds.  If either answer is no, then don't waste your time there.  

http://www.thyroid-info.com/topdrs/newyork.htm

When you go in for testing on Monday, I suggest that you should also get tests for Vitamin D, B12, ferritin, and a full iron test panel.   If it has been at least two months since the last tests for Free T3 and Free T4, I would ask for those again.  And one more that will probably blow their mind is Reverse T3.  I suggest that because there are reports that the very best indicator of tissue thyroid levels (most important ) is the ratio of Free T3 to Reverse T3.  

Only other thought right now is that the two best downstream measures of thyroid status are basal body temperature and basal metabolic rate, you could test yourself with a thermometer in the armpit before getting out of bed in the morning, for several days, to get a good reading of your temperature.  Basal metabolic rate is also a good test, but it requires test equipment that doctors don't usually have.  If done elsewhere it costs about $90.  The value is that it can show your basal metabolic rate compared to what  would be expected based on  your gender, weight, height, and age.   If it is low, then low thyroid levels are the likely culprit.

Just some Saturday morning thoughts for you.    

[Nativelaw]

Thanks so much for your information, Gimel.  I was diagnosed with lyme a year ago, given a short course of abx, then four months later developed Bells Palsy.  I got another short course (3 wks) of abx and docs said that's all, you're cured.  I started myself on the Stephen Buhner herb protocol of japanese knotweed, cats claw, stephania root, and started taking vitamins and other herbs also to boost my immune system (coconut oil, fish oil, alpha lipoic acid, magnesium, as examples.)  Feel like an old lady in  number of things I take, but it has kept my lyme symptoms pretty much at bay.   As you probably know lyme plays havoc with your whole body and can cause autoimmune things that are under the surface, to get out of wack and become symptomatic.  When I got very tired I had my doctor do some other tests, such as for Vitamin D, and for babesia, bartonella and ehrlicchia, and was also tested for mono and cytomegalovirus by an ID doctor there.  The ehrlicchia, mono and cytomegalovirus all came back IgM negative (not showing current infection) but IgG positive (confirming past infection).  I also have tested twice in a row for 12.8 WBC count even while on abx.  Am due for a retest on Monday to see if I am still showing the elevated WBC count.  My Hashimotos antibody scores were or TgAb, <20 with a reference of 0-40, andfor TPO it was 6 with a reference range of 0-34.    As far as the Hudson Valley, I'm about an hour north of NYC.  Thanks again for all the help.

[gimel]

You mention Lyme disease.  Have you been diagnosed with that?  If so, when and also what has the doctor done to treat?  

You have a number of symptoms that can be associated with hypothyroidism.  Also, your test results are in the lower half of their ranges, which is frequently associated with having hypo symptoms.  That, and your TSH and mention of TPO ab and TG ab testing made me wonder about the possibility of early stages of Hashimoto's Thyroiditis.  What were the actual results and ranges for those antibodies tests?  

You asked about a doctor recommendation.  You are right to be considering that, because most doctors who go by the book, would dismiss your concerns and tell you that all is "normal".  What you need is a good thyroid doctor, by which I mean one that will treat clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  

If you cannot persuade your current doctor (s) to give you a therapeutic trial of thyroid meds, then we will have to try and help you find that good thyroid doctor.  So is your location of Hudson Valley a general area, or were you giving the name of a town?  

[Nativelaw]

Hi, gimrel, thanks for your response.  As to other symptoms, I was experiencing tiredness always, but I take care of a business and a small farm with five horses so attributed it to that and lyme.  It became a crushing fatigue in February, requring me to take naps a couple of times per day and still going to sleep early, but It was determined by a blood test that my Vitamin D (25) was only 16 (ref range 30-100) so I was put on 50,000 mcg Vitamin D 2x/wk and that has helped greatly.  My hair has gotten drier, and my skin is dry.  I have always been sparsely haired on my forearms and legs and my leg hair seems to have almost completely stopped growing, the ends of my eyebrows always sparse.  Puffiness in the face and neck often.  As to my free T3 & FT 4, FT3= 3.0 with a ref range of 2-4.4; FT4=.97 with ref range of .78-2.19.  (I didn't realize these could vary, sorry.)

[gimel]

It would help us give you a better response if you would also tell us about any other symptoms you have besides weight gain.  Also, please post the reference ranges for the Free T3 and Free T4 tests, as shown on the lab report.