For 2+ years I have had abnormal thyroid tests with inability for any doctor to commit to a definitive diagnosis. I am *very symptomatic.
* I will add details on symptoms later (to try to keep this brief), but would greatly appreciate input on to what you believe diagnosis is-
49 yo single female, self-employed (barely able to work at presentdue to weakness) professional with 2 children age 10 & 20-
TSH: (My values=Always VERY LOW -since first tested '08)- -(Lab Norm=0.35 to 5.50).
Results 02/10 to 10/10: -- 0.04 (10/10) -- 0.04 (08/10); -- 0.03 - (08/10); -- 0.09 - (04/10); -- less than 0.05 - (03/10); -- less than 0.01 - (02/10). Note: NOT ON ANY THYROID MED 02/10- to present.
TSH - Results 02/08 to 01/09:
-- 0.014 (01/10) -- less than 0.005 (12/09); -- less than 0.005 (10/09); -- 0.11 (06/09); -- 0.299 (02/08)
Note: Intermittently on Armour and Levothyroxine during this time frame from 02/08 to 01/09).
FREE T4: (My values =Low to Low-Norm) (Lab norm= 1.4 to 3.8); = 1.6 - (10/10)
(Lab norm= .89 to 1.76); =1.1 (08/10); -- 1.0 - (02/10); -- 1.85 - (12/09 On Levo); -- 1.28 - (10/09);
Note- Some of my doctors refuse to order "free" T4 and only do total T4, some also refuse to do freeT4 and only do TSH, despite my telling them my TSH: fT4 & T4 + T3 do not coincide with "normal" trends.
Thyroid Peroxidase (Mine= VERY HIGH - Lab norm= 0 to 60):
-- 4,425 (02/08) - Yes, result was 4 "thousand", 4 hundred and 25- Lab said this is highest they had ever seen-
T3 Uptake- Mine High to High Norm - (Lab normal values= 23 to 36) E.G. My result =33 on 10/10; 30.8 on 04/10, etc. T7- Mine normal E.G. 1.9 on 10/10, 1.3 on 04/10. (lab norm value range= 1.0 to 4.5)
Other labs- Cortisol 5 to 11.0 runs low to normal- Doc said ACTH stim test last year normal, but would not give me results.;
Metanephrine: Doc said "slightly high" last year, 12/09 but would not give me result, c-peptide 01/10 less than 0.05 (N=0.80 to 3.90);
DHEA Prolactin & FSH normal all WNL. My H&H, albumin and total protein usually low-normal but improving since I've been putting more effort into eating more to gain some weight- My weight is in normal range (130-140), but dropped down to 110 last year before they discontinued the thyroid pills-
I said I would not include symptoms until later (sorry I am very tired and difficult to type and concentrate for so long)- But I feel I must add: I have been very hypertensive & tachcardic in recent years, with wide pulse pressure (high systolic)...B/P range 140 to 220 systolic- 70 to 110 diastolic, depending on meds I'm on, which has been between 1 and 5 different HTN meds during this time- Currently on 4 different B/P meds (Accupril, Norvasc , HCTZ, and Metoprolol (Lopressor)... Current B/P range= 150-180 syst over 76-96. (Doctors well aware)
Pulse on beta blockers 60-80's (currently closer to 90)- Pulse prior to beta-blockers- high 80's to 120.
OTHER TESTS- Summary, since I'm really too tired right now to complete post..
CBC w/diff, chemistries, lipid profile, etc. all basically WNL-
CT Head: (Done a few times due to intermittent severe headaches (none at present), frequent (constant) dizziness, blurred vision, etc. Normal last year, this year microvascular changes, mild frontal atrophy...
CT Neck: DONE 09/30/10 (summary): Multiple hyperdense masses in thyroid largest 2.6 cm. + multiple smaller nodules, degenerative changes C5-7, Abnormal lymph node- "thyroid carcinoma is a consideration- Thyroid US and biopsy recommended"...
Thyroid SONOS done on 10/08, 02/10 and 10/10- Summary= Bilateral thyroid nodules, MNG... will add details later).
Thyroid Uptake scan- done 10/10 will add details later) -Increased uptake left- 18%- (low end of range). No mention of "hot or cold" + radiologist both said to me and in report "Biopsy not indicated at this time"- Disagrees with 2.7cm nodule on sono- said largest = 1.7 cm.
Please note- ENT MD I saw on 9/9/10, who reviewed CT neck said I should have biopsies done ASAP-
--------------------Extra Info- Don't spend time reading, if you are busy---
Eye Exam- winter/2010- Mild cataracts, no Diab retinopathy, wrote script (1st time) for reading/distance glasses- don't help- made me dizzier, I use OTC 2.75 reading glasses instead, with much difficulty seeing (blurry) - Photophobic too.
My tolerance for any stress both physical and mental is currently very, very low---
Some more clinical info + some more "ranting" (sorry) about my inability to obtain knowledgeable and helpful physicians...
Primary MD seems clueless (or dis-interested) about almost everything-
Although I've been at their office about 8 times in past 2 mos. they forget the most basic (important) things I tell them- E.G. I think I've told them at almost every appt. that I am a IDDM since age 12, but they always act like it's the 1st time I informed them...
At moment he said he wants me to possibly go to another endo, so far I've been unable to find only one since my (decent University Center-based) endo docs stopped taking my ins. last April-
The endo I saw on 10/07/10 also did not review reports until I repeadedly called office over 2 weeks (like ENT doc)- I reached him this week and he said "I don't do biopsies, you'll have to call your insurance company to find someone"- I explained I could not get done anywhere until a doctor wrote a "script"- he hung up on me- Next, I spent 1+ hr. on phone with ins. company yesterday but of course they were uable to help me to "find and schedule" a doctor to do "biopsies" -
I think it's the responsibility of all (my primary, endo, and ENT) I saw, but they don't seem to think so -
It's been a frustrating battle getting appropriate medical care here in Suffolk County, Eastern Long Island NY- Possibly due to having a very crummy insurance plan (Family Health Plus- Americhoice United),which is "state-sponsored and decent doctors I know here won't take it. (I worked in medical field for years)
Prior to 2008,I was always "very healthy and active", despite - IDDM since age 12 (in case you didn't notice that's why I included the C-peptide results above)- but I've always tried my best to keep blood sugars stable, testing BS 10-12 times, day, carb counting, insulin pump for years ...etc. BTW the only time my BS's are totally out-of-control was during 2 pregnancies (1990+2000) and past year- (hormonal causes)
Thank you for your review and input!
Please excuse any typos poor grammar- I actually am (used to be) a very smart, educated person, but due to my "brain fog", stress, frustration and complete physical exhaustion, I simply don't have the energy or desire to re-read and proof this very long post right now- Thanks for your understanding:)
P.S. I am very "natural health" oriented, particularly with nutrition- Try to avoid almost all chemicals, preservatives etc. (esp. since I've become very hypersensitive)- Note the Dx of "Fibromyalgia and CFS (Chronic Fatigue Syndrome)" have been mentioned recently, esp. since + EBV- but regardless my long-term thyroid/pituitary abnormalities need to be addressed, diagnosed and hopefully corrected....
Wow! That was a long post! Never mind though, I do empathise with you on the brain fog bit!
First up, the fact you were on both Armour and Levothyroxine intermittently at different times of your blood draws makes it difficult to know what is going on.
You look hyper jsut based on the info you have provided. But of course, it's hard to say as you haven't listed what medication you were on at each blood draw. This can change the whole 'look' of pathology results.
Based just on your antibodies test you have Hashimoto's disease. You have Multinodular Goitre, and you have nodules which need addressing! Yes, definitely get the FNA biopsy done as soon as you can. BTW the numbers with anti-bodies has nothing to do with the amount or severity of symptoms, this is just a number that reflects you do have a heap of anti-bodies running around in there!
The other issue is your pituitary gland. This definietly needs looking at as well. The fact you are having such low TSH numbers can indicate you have an adenoma/tumour (these are never cancer) and it is interferring with the release of hormone to regulate your thyroid.
SO! No wonder you feel cruddy.
Many doctors are not able to put the lot in the box and come out with an answer. You are going to have to be your own best advocate in dealing with your own health care. We thyroid patients can tell you all our horror stories here!!! BUT keep at it and know you can and will get the help you need. It takes one step at a time. Treating each thing as it arises and not trying to jump the gun on getting well immediately is a key point.
Get the FNA first, if you have to lose your thyroid then you can deal with those issues as they arise. You may need to pay for doctors (not fun or easy I know) to see you rather than relying on your health insurance. Even finding a teaching hospital may be better than doing the rounds of different doctors who refuse you on your health insurance might be better.
Hang in there, I am fighting my battles with my thyroid issues, but I know the people here are a great support and no doubt you will find that too.
Thanks for response - I will try to (condense) above post when I have more time/energy-
...Wanted to highlight that I have been OFF all thyroid medication since February 2010- (8 months ago);
And, OFF MEDS TSH is still very low and FT4/T4 etc. still remains low to low normal
I'm still in what may be referred to as "subclinical hyperthyroidism" Certainly autoimmune-- probably also a "secondary" thyroid problem-
Hashi's, MNG...who knows?? I just want to feel better!
MRI last summer revealing "pituitary cysts" seemed important to me, but current MD's don't seem too interested in this, since recent Prolactin, FSH, and ACTH levels normal.
BTW, May be a coincidence, but my severe headaches seem to have resolved since I started taking Magnesium Malate last week, despite pulse and systolic B/P still running very high (???) Unfortunately muscle aches, spasms, weakness etc. (moderate to severe pain most of time), has not improved, which is the main reason why I tried the Malate form of Mg+, -
HA improvement may also be due to very high dose of ASA I'm taking in attempt to control pain and be more mobile;
(No, I don't have option to stay in bed all day, and tried other OTC's (e.g. Tylenol, Motrin, Naprosyn, etc.) which did absolutely nothing- Only ASA (5 to 20/day) helps a little -
I'm completely intolerant of caffeine at present- But right now I'm going to make coffee (9am Sunday here in U.S.), because I'm determined to take my son out somewhere fun today (like pumpkin-patch, park, bowling or movies) even if it kills me-
I'm not the "accepting of bed-bound/chronic illness" type of personality-
Yes stress level is VERY high right now- (which also depletes energy)
Sort of ironic that when a person is least capable to "advocate" for themselves (illness, low energy & decreased finances) is when they need to do it the most.
Thanks for your support and helpful information/suggestions.
P.S. I'm still wondering the liklihood that neuro s/s (HA, dizzy, blurred vision, etc.) are due to "pituitary cyst/mass" (?)- - - These are all also s/s of "hyperthyroidism"
Would Neurologist evaluate this, or do I just need to find a better endo doc?
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