Help please

[BarbaraSS]

Hello.  I have been reading posts for some time trying to learn what I can, and am now finally ready to ask my questions.

I believe I have had a thyroid problem for over 10 years.  I have progressively gained weight pretty much 10 lbs a year for a total of 50-60 lbs with no real change in diet or exercise.  That isn't my biggest complaint however, but it is the only one that can't be disputed because it is seen and it is not reliant on my saying how I feel.

I have lost virtually all body hair.  I've started losing head hair in the last few years.  I am cold all of the time and not just grab a sweater cold, but cold to the bone and I despise being cold.  The fatigue is indescribable.  I have begged for help, but no one believes I am just that tired.  Dry hair, skin, nails.  Constipation, low Vit D, low B12, recurrent sinus infections.  Forgetful, irritable, tired but wake up at night and can't get back to sleep.

I've seen derms for hair and skin, just "normal".  I try to exercise, but anymore it is just so hard to even get up for doing it.

Puffy face (maybe just fat), terrible eye problems (tearing, gritty, puffy).  I have the fattest arms like disproportional to the rest of my fat self.  And, for the past year, I have had very sporadic periods.  Months without and then months with heavy and long.  Tell me I'm perimenopausal, maybe.  Only other thing is my diastolic pressure has been high, the systolic occassionally, but the diastolic much more regularly.  Also do not know what this means.

I've had my thyroid tested several times over the years and its always normal.  

TSH has always been around 1.8-2, FT4 is ALWAYS 1.1, FT3 is 2.2-2.3.

RT3 was 17, also considered normal, but if I understand the ratio to FT3, not optimal -- who cares?

My mother and grandmother were both hypothyroid but both have passed so I don't have them to get details.

I've read about optimal ranges and clearly mine are not, but they are in range so no doc will do anything.  What I'm wondering is that even when my TSH changes, interestingly the most recent was the lowest ever at about 1.3, my FT4 NEVER changes.  It is always 1.1.  I can go back years and it has never been anything else.  

Sorry for rambling.  Is there any indication that this could be thyroid with normal results?  I haven't seen anything about FT4 never moving, so don't know what, if anything, it means.

I'm 46 so I think I will now just be written off as peri/menopausal and will forever have to live like this.

Sorry for being so pessimistic...I truly do appreciate input.

Babs

[BarbaraSS]

So, my FSH and LH came back high (menopausal -- LH could be mid-cycle, but since I haven't had a period in 4 months, going with menopausal).  My period has actually been on and off and when on, extremely heavy and then off and I've been a few months without.  I am 46.  She told me it is normal to go through menopause as early as 40 with the average being 51.  I'm in the middle.  

Now here's the kicker -- the PTH and Estradiol came back as not able to test because there wasn't a proper sample.  Don't know anything about FT3 or RT3, but I suspect that she didn't even test them after all. So, back at not knowing anything.  Beyond annoyed and tired and tired and annoyed.

Sorry this doesn't really add to the discussion, but knew this gang would appreciate the frustration.

And thank you Gimel and Kel for your comments.  I think I need to do my own testing, find a new doc and go see an endo.

And, Gimel, yes I got your doc names.  Unfortunately the one I really like is not actually in CT and the other I can't get in with for several months.  I guess that's to be expected.

[gimel]

Based on everything you have told us I'd say you definitely are hypothyroid and may be hyperparathyroid as well.  We will know more when you get the other tests back, but as I understand it there is about a 20 % chance that the PTH test will be normal even if you do have a parathyroid tumor.  

So let's see what tests were done and the results.  Also, did you get the PM with doctor suggestions?

[1Kel12]

Sorry you are struggling with docs, I felt the same way last year, it can be so frustrating. Don't give up, you'll get this sorted out...you have to and it is worth it. This site helped me immensely and probably saved me at least a year of wasting time getting dosage right etc.

Just to give you an idea ... Some symptoms I had that resolved after I started NDT and my vitamin levels normalized;

-eczema on my face (sudden appearance last 2 yrs)
-serious eye swelling (last 5 hrs or so)
-routine leg edema (significant) always puzzled my docs
-dry eye, started 10yrs ago and I routinely tore my epithelium
-struggle with weight, not major but 15lbs came out of no where and I do endurance sports
-routine low back ache
-perimenopause symptoms becoming difficult
-hair loss last 2 yrs
-throat choking and swelling left side only (became emergency room stuff after awhile)
-terrible acid reflux (docs concerned and performed upper GI)

Just to help you stay strong, this is ONLY a partial list of mine and everything above disappeared completely - no exaggeration. I have not used my dry eye night gel, constant drops...ugh, I can still hardly believe it...for 9 months!

Ok, well, the peri is still with me as I'm just a bit older than you but it is hardly anything now, mild symptoms at best, not a big deal so far. What I thought before was peri was thyroid issues.

I hope this helps, keep pushing for good docs and answers, I went though 12 last year before figuring it out.

I feel for you, take care and good luck!

Kel

[1Kel12]

Typo's...hrs should be yrs..years.

[BarbaraSS]

Hi, in reading some other posts it reminded me of one other thing my pcp said.  When I really pushed re: the FT4 always being low in range, the FT3 also being low in range and the RT3 and ratio not being optimal, she said that she has several people who want to do a trial of thyroid, but it puts them at an increased risk of heart attack if they do and don't need it.

Is this true?  From my reading, I'm guessing that she thinks b/c it will suppress the TSH it then makes you hyper and therefore increases the risk of heart problems.  Does that seem like what she's saying?

Truthfully I didn't actually think she would do anything, but I was hoping to get the tests done so I can take them to someone new who will give them a fresh look.

I honestly don't care what name you give it, I just feel terrible and for goodness sake am only asking to feel better.  It seems that it is all in my head -- but it's not.

Again, I appreciate any comments.

[BarbaraSS]

Hello again.

I went to my PCP and discussed thyroid, parathyroid, etc.  She was rather reluctant but did agree to test both.

My TSH has come back at 1.62 (0.5-4.5) and my FT4 finally budged, but it fell to 1.0 (0.8-1.8).  I asked for the FT3 and RT3.  I don't know if she did them and they didn't come back yet or if she didn't do them.  It was like 8 vials and she tested things like lyme (which was negative).

My SED rate jumped from 2 to 8, but still normal.

My calcium came back again at 10.1, again technically normal, but according to parathyroid.com adults over 35 shouldn't be in the 10s, at least not 2 or more times (I have now 3 times).  

When I questioned her, she said that it has to be corrected for albumin and therefore my level isn't high.  Parathyroid.com says calcium should never be corrected down for albumin.  She said they are wrong.

She tested the PTH, but it hasn't come back yet.  Which, I know, will be the most important factor to rule out a parathyroid problem.  She did warn that the insurance may not cover b/c my calcium levels are normal, but she did say they will just send a bill as opposed to not testing it. Fingers crossed that they don't just throw it out.  If so, I will just do my own testing.

My hormones are coming back menopausal, so while on the younger side, still apparently normal.

My latest symptom, which may be unrelated, is a sinus feeling headache (several days) but not sinus issues.  My allergies aren't bothering me and I haven't been sick (per se).  And now I'm getting dizzy a lot, especially if I move my head to quickly.  

So I'm just sharing a minor update and of course, if anyone sees anything worth suggesting, I am always searching for answers.

Thanks so much for taking the time to read this.

[BarbaraSS]

Thanks Gimel.  I would welcome any other feedback or personal experiences...

In looking through my med file, I came across another avenue I once thought might be a link to my issues.  I dismissed it at some point, although I am not certain why now and don't know if you would have any insight.

It had to do with parathyroid, which I know has nothing to do per se with the thyroid.  A couple of years ago when I first started investigating the loss of head hair, I received a high urine calc ox test.  No mention of it or any concern with it and to date I haven't had any issues.  

My reading led to serum calcium levels and then to vit d deficiency.  I was at the time concerned that my vit d supplementation was causing a high serum calcium.  I since backed off the vit d supp.  

Anyway, in looking at past labs, I see my serum calcium has been 9.6-10.1 every time it has been checked.  10.2 is considered high for an adult and an indication of hyperparathyroidism.  When I first got the result over 10, coupled with a very low vit d (9), I thought maybe this could explain the fatigue and some of the other symptoms.  (Doesn't account for weight gain, simply it seems the only thing you gain weight with is hypothyroid).  My doc said because of my albumin level, it was fine.  I don't know what that means really, but I accepted the answer.  

Do you have any insight to parathyroid?  

Secondly, re: hypothyroid, has your research shown anything about myxedema?  I have extremely fat arms and can't pinch any skin, there or anywhere else for that matter.  Curious if you found any support for this.  I've read this is one test they used prior to the TSH.

Also, I've read some on the ankle tendon reflex test.  Any info on that?  Is there a way to test this at home?

One other strange symptom that has crept back up with a fury is restless leg. Is this correlated with thyroid, parathyroid or anything else?

I have had this to varying degrees for nearly 30 years.  I remember watching a movie years ago and I could just not sit still.  I had no idea why, when everyone else can, but I just remember my legs needing to move.  I've had issues with this come and go and typically aren't too horrible, except recently it seems I've had some kind of flare.

Just trying to put pieces together.  Thanks all for the help.

[gimel]

Central hypothyroidism is defined as a reduction in circulating thyroid hormone as a result of inadequate stimulation of a normal thyroid gland by TSH and may be secondary, due to pituitary disease, or tertiary, due to hypothalamic dysfunction.  If the thyroid hormone levels are low enough to cause hypo symptoms, that is all that should matter, not whether the TSH should be much later, and the FT4 has to be below range.  That is Reference Range Endocrinology, which doesn't work for most people because due to the erroneous assumptions used to establish the ranges they are far too broad to be functional across their entire breadth.  

Take another look at the quote I gave you from a good thyroid doctor.   Symptoms should be paramount.  In case you still have reservations about what I am saying I am sending you a PM with info.  To access, just click on your name and then from your personal page, click on messages.  

[gimel]

When a doctor diagnoses a potential thyroid problem the most important thing to evaluate is symptoms, followed by the Free T4 and Free T3 levels.  The only time TSH is useful is in identifying overt hypothyroidism (TSH > 10).  Otherwise, TSH does not correlate well with either of the biologically active thyroid hormones, Free T4 and Free T3, much less correlate with symptoms.  

Unfortunately doctors have been trained to believe that TSH is basically all that is needed to diagnose and treat a hypothyroid patient.  This "Immaculate TSH Belief" overlooks patients who have TSH above range, but Free T4 within the range, by classifying those as subclinical, with no treatment offered.  Also it overlooks central hypothyroidism, which is a dysfunction of the hypothalamus/pituitary system that results in relatively low TSH that inadequately stimulates the thyroid gland to produce hormone, with resultant hypo symptoms.  This seems to be your case.  

Ignoring symptoms that are so frequently related to hypothyroidism and not recognizing central hypothyroidism is quite common but totally wrong.  In addition, in evaluating thyroid test results, note the following 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."   Assuming that the reference ranges shown on the lab report for your FT4 and FT3 something like .8 - 1.8 and 2.3 - 4.2, respectively, your levels are much too low.  

So a good thyroid doctor will treat a hypothyroid patient clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, without being constrained by TSH levels.  Symptom relief should be all important, not just test results.  You can get some good insight from this link written by a good thyroid doctor.  

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

So you need to find a good thyroid doctor that will treat clinically as described.  If you will tell us your location perhaps we can give you names of doctors in your area that have been recommended by other thyroid patients.  

Also another thing to keep in mind is that hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin.  If not tested for those you should do so and then supplement as needed to optimize.   D should be about 50, B12 in the upper end of the range, and ferritin should be about 70.

[BarbaraSS]

Hi Gimel,

Thank you for your reply.  I am in Connecticut and would welcome any docs you can recommend.

I read some on the central hypothyroidism.  It seems that my TSH has to be much lower and my FT4 has to be below range, which it is not.  I see so much on FT4 and FT3 being higher in the range, but this seems to all be people who are taking thyroid meds already.  

It's strange to me that people who take the meds feel better when their levels are higher, but untreated people whose levels aren't in the upper range are left alone.  I would at least like to be given the opportunity to experience FT3 and FT4 at so-called "optimal" levels.

I have seen rhuemys, gynos, derms, gastros, and no cause for my symptoms has been established.  I'm the heaviest, most fatigued normal person on the planet.

Someone recently told me that its just that I like to sleep.  I almost cried.  No, I don't just like to sleep.  I want to do things with my kids and I want to enjoy life.  I am NOT depressed, maybe a little bitter that I feel terrible most of the time.  I don't want to go to bed at 8pm.  I want to stay up and watch a movie, read a book (zzzz), play a game or just talk.  I don't have friends over anymore or go out much anymore because I can't possibly stay up late enough. And one drink and I'm toasted.

Sorry for whining, I just feel like giving up.  If it weren't for my amazing kids, I most likely would.

Thanks for listening.  If you have any more wonderful words, I so truly would appreciate them.

Thanks again.