Hashimoto's? Riedel's? Addison's??

[HypoJoeThyroid]

Dr. Lupo - Dec. 3rd I was diagnosed hypothyroid and put on 200mcg Levothyroxin. I have had several ultrasound guided FNA biopsies on both lobes of my thyroid as well as a core needle biopsy.  I have also had 2 FNA biopsies completed on my lymphnodes next to my thyroid.  My current doctor isn't sure if I have Hashimoto's or Riedel's. They haven't come up with anything definetive with any of the biopsies. The core needle that was done ruled out any cancers though. I've read on the internet that Riedel's can't be accurately diagnosed via a core needle biopsy and that diagnosis is better achieved with thyroidotomy.  Since starting Levothyroxine I have noticed increasing fatigue, and a soreness in my neck and jaw, to the extent that eating a bagel in the morning feels like I put my jaw through a rigorous workout at the gym; very sore and stays so for an hour or so afterwards. Below are the test results from my initial visit before starting Levothyroxine.

Component      Standard Range     Your Value
WBC COUNT 3.9 - 11.9 K/UL      8.2
RBC COUNT 4.08 - 5.79 M/UL       4.55
HEMOGLOBIN 13.1 - 17.1 GM/DL    12.8
HEMATOCRIT 38.7 - 51.4 %      37.6
MCV                 82.9 - 100.6 FL      82.6
MCH                 27.6 - 33.2 PG      28.2
MCHC                 32.0 - 36.0 %      34.1
RDW                 10.0 - 16.2 %      16.6
PLATELETS         179 - 450 K/UL      289
MPV                 7.4 - 10.4 FL              6.2
% NEUTRO         43 - 80 %             68.5
% LYMPHS         16.0 - 49.0 %     19.6
% MONOCYTE 0.0 - 10.0 %             7.7
% EOS                 0 - 7 %                     3.4
% BASO                 0 - 2 %                     0.8
ABS NEUTROPHIL (ANC) 1.6 - 8.1 K/L  5.6
ABS LYMPH         0.9 - 3.5 K/UL     1.6
ABS MONOCYTE 0.0 - 1.1 K/UL     0.6
ABS EOS         0.0 - 0.8 K/UL     0.3
ABS BASO         0.0 - 0.2 K/UL     0.1
SED RATE         0 - 20 MM/HR     34
25 HYDROXY D 30 - 100 NG/ML     22.7
PHOSPHORUS 2.9 - 5.2 MG/DL     4.0
ALBUMIN         3.5 - 5.0 GM/DL     4.6
ANTI THYROID PERX AB 900.0
CALCIUM         8.6 - 10.5 MG/DL     10.3
FREE T4         0.7 - 2.0 NG/DL     1.3
TSH                 0.47 - 5.00 UIU/ML     35.17

I called my endocrinologist's nurse and informed her of my weakened state and jaw fatigue.  My Endo had me come in for a cortisol stim test.  The results are below.

                            Value                Range
TSH                     3.90                0.47 - 5.00 UIU/ML

ELECTROLYTES
Value
Range

CO2
26.1
22.0 - 29.0 MMOL/L

CHLORIDE
102
98 - 107 MMOL/L

SODIUM
136
136 - 146 MMOL/L

POTASSIUM
4.1
3.5 - 5.1 MMOL/L

CREATININE SERUM
Value
Range

CREATININE
1.76 (*)
0.72 - 1.25 MG/DL

SERUM CALCIUM
Value
Range

CALCIUM
9.7
8.6 - 10.5 MG/DL

SERUM ALBUMIN
Value
Range

ALBUMIN
4.2
3.5 - 5.0 GM/DL

CORTISOL PLASMA OR SERUM
Value
Range

CORTISOL (BASE)
2.4

CORTISOL (30minutes)
18.8

CORTISOL (60minutes)
22.0

Is there any correlation between my low Cortisol base, high Creatinine level and low sodium level? Looking at my results above, would you say I have hashimoto's, riedel's, possibly addison's???  I have an appoitment with an endocrinologist at the Mayo Clinic in Rochester in January, but my current Endo's lack of interest in explaining my test results has me concerned and wondering.

[Red_Star]

When I first started thyroxine, I had a week of hyperthyroid symptoms followed by a month of worsening hypothyroid symptoms. At first I had too much thyroid hormone then my thyroid gland decided to lower its thyroid hormone production in response to medication. Sounds like to me you are in the same boat - worsening of hypothyroid symptoms. And 200mcg is far too high to start with.

Drugs website - Levothyroxine Dosage...

Usual Adult Dose for Hypothyroidism

Oral:

The initial dose is 12.5 to 50 mcg orally once a day. The dosage can be increased in 12.5 to 25 mcg/day increments every 2 to 4 weeks. In older patients or in younger patients with a history of cardiovascular disease, the dosage should be increased in 12.5 to 25 mcg increments every 3 to 6 weeks.

Few patients require doses higher than 200 mcg. Inadequate response to doses higher than 200 mcg is rare and may suggest malabsorption, poor patient compliance and/or drug interactions."

I also had to deal with the symptoms of very bad untreated adrenal fatigue on top of that as well. Talk about being hit like a truck! Thyroid imbalances put stress on the body and the adrenal glands.

Your labs show iron deficiency anaemia (low hemoglobin, low hematocrit, low MCV, elevated RDW) - low thyroid function slows down bone marrow production which looks to be the main reason for this deficiency.

Vitamin D deficiency -  possible explanations: poor absorption of vitamin D from the intestine or the body may not activate vitamin D properly.

Low sodium/high creatinine...

"Hyponatremia is the commonest electrolyte derangement in hypothyroid patients. Hyponatremia appears in 45% of hypothyroid patients who have elevated serum creatinine, but in less than a quarter (21%) of those with normal creatinine levels. It is mainly due to a reduction in GFR causing diminished water delivery to the distal tubular segments." - European Journal Of Endocrinology - Thyroid dysfunction and kidney disease.

[Barb135]

No, I'm not a doctor.  As I noted above, this is a patient forum and everyone here has either "been there, done that" or looking for help.  I'm one who has been there, done that and like others that have been on the forum for a few years, I've done tons of research to learn about thyroid disease.  I hate to say it, but some us may be more up to date on thyroid issues than you doctor is.

I must admit that I'm not familiar with Riedel's, and from a very limited knowledge base, it's extremely rare... something like 37 cases from 1927 - 1981 - I may not have the numbers/years exact, but you get my point.

From what I read, surgery to obtain tissue (a section of the isthmus) is usually needed to confirm a dx of Riedel's.  Additionally, I see that Riedel's it treated with a combination of levothyroxine, corticosteroids and tamoxifen, which is also used to treat breast cancer. That's quite a cocktail... lol

Taking another look at your labs, I notice that your calcium level is at 10.3, with a range of 8.6-10.5.  Has any consideration been given to parathyroid disease?  Most of us have 4 parathyroids, whose function is totally unrelated to the thyroid gland, other than the fact that they "live" behind the 4 corners of the thyroid.  The parathyroids control the amount of calcium in the blood; yours is quite high in the range, indicating that it would be worth while to have a Parathyroid Hormone (PTH) test done...

So, you have the indication of vitamin B-12 deficiency, confirmed vitamin D deficiency, elevated Thyroid Peroxidase Antibodies and the higher calcium levels.  

In my research on Riedel's I can't find any antibody test that would confirm it, but you have the elevated TPOab, which is a definitive indicator of Hashimoto's.  

So, all of this said, what symptoms do you have and why is your doctor suggesting that you might have Riedel's, when your antibody tests clearly indicate Hashimoto's?

[HypoJoeThyroid]

Treatment for Hashimoto's is different than treatment for Riedel's.  I am on Vitamin D3 supplement.  I was started out on 200mcg.  Are you a doctor?

[Barb135]

I forgot to mention that Dr Lupo doesn't monitor this forum.  In order to get a response from him, you have to post on the expert forum.  They only accept so many questions/day and the excess gets sent to this forum.  

We're all patients, like yourself who have been through the mill and have done a lot of research into various thyroid conditions.

If you want a response from Dr Lupo, you'll need to keep trying the expert forum.  

[Barb135]

It's very simple to diagnose Hashimoto's.  All they  have to do is draw blood and run 2 antibody tests.  Those are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab).  Oops -- I see the TPOab at 900, which would be the basis for a diagnosis of Hashimoto's.

Treatment for Hashimoto's is no different from treatment for any other type of hypothyroidism.

Your doctor STARTED you on 200 mcg levo?  I don't see a Free T3; did you miss it on your lab report?

Your RDW indicates that you might have vitamin B-12 deficiency.  You should ask to get that tested.  I also see that your vitamin D level is way too low, indicating deficiency.  Did your doctor recommend supplementing?  If not, you should talk to her/him about that.  Vitamin D deficiency can cause some of the say symptoms that hypothyroidism causes.  

We need ranges for the cortisol levels.

From what I see, your doctor started you on too high a dose; it's always best to start lower, if you've been hypo for a while.  There are a lot of dosages between 0 and 200 that might have been sufficient for now.  It's also not unusual for symptoms to worsen or for new ones to show up, when first taking a thyroid replacement hormone.  

My other suggestions would be to get vitamin B-12 tested... deficiency can cause the most unimaginable fatigue/tiredness you've ever experienced.  Talk to your doctor about supplementing vitamin D.