# Please help-confused



## ifthespiritmovesme (Jan 8, 2014)

I'm new to this forum, but could really use some good info. Hope you can help.

I am having a hard time getting my doctors to treat me for thyroid problems I have had for decades. Tested lots of time through the years - always "normal" - couldn't believe it! Then I learned that Free T3 and T4 need testing. After 6 years of fighting my PCP (who relied solely on the TSH test) I convinced him to put me on meds. as I had nearly all symptoms of Hypothyroid. He gave me .025 MG Levothyroxine. Within 2 months, I dropped 50 lbs.! No other noticeable change.

After 5 years on that dose, My SHRINK finally ordered the Free T3 and T4. These are the results, August 2013:

Aug 2013: (on .025 MG Levothyroxine)
Thyroyropin 1.70 (Ref Range: 0.10-5.50)
Thyroxine.Free 1.0 (Ref Range: 0.7-1.6)
Triiodothyronine.Free 2.5 (Ref Range: 2.3-4.2)

Since my levels were low, I fought (and fought, and fought) with my PCP to increase the Levothyroxine, and finally he agreed and raised me to .050 MG in August. Wen retested in November. The results follow:

Nov 2013 (on .050 MG Levothyroxine)
Thyroyropin .043 Ref Range: 0.10-5.50
Thyroxine.Free .09 Ref Range: 0.7-1.6

There was no Nov testing for the Triiodothyronine.Free in November.

Seems strange that my Free T4 went down with an increase in Levothyroxine, and I think my Free T3 is way too low still.

My PCP gave me a consult to an Endocrinologist, but the Endo refused to see me, stating that TSH and T4 are better indications of thyroid function than T3.

I still have the symptoms. The only noticeable change I experienced when he upped me to .050, is that my lifetime of chronic constipation and inability to have BMs went away!! I didn't even know that was related to my thyroid!

I had a Vascular Screening by my local county hospital. All fine there, but they found a node on my thyroid. I am scheduled for a thyroid sonogram on Jan. 21. Hoping this will give my PCP more ammunition to get better treatment for me. (I am a veteran and get treatment from the VA) He asked if I wanted to see another VA Endo. and I said "sure- if you have one who is a woman suffering from an autoimmune thyroid problem." They don't, so I will be fighting to see a local Phys. and have the VA pay for it. I've found a good one through a thyroid support group. Please keep your fingers crossed for me!

Additional information: My normal body temp is 95 degrees and BP 90/60.
Mother and her mother had bad RA, sister was Hyper, had a goiter and thyroid removed years ago.

Also a weird thing...all 3 of us women lost weight with pregnancy. ie, we would gain maybe 13 lbs. in total with pregnancy, then lose 45lbs. when baby was born. Was a joke - if we wanted to lose weight, we'd just tell each other to get pregnant again. This makes sense to me in a way - if the immune system is suppressed during pregnancy, perhaps our thyroid was actually working properly for a change....any thoughts??

I am so confused. I do believe I have an autoimmune thyroid problem. Please share your thoughts with me.

Thanks so much...


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## Andros (Aug 26, 2009)

First and foremost; it would appear you have some very very bad doctors.

TSH, FREE T3 and FREE T4 are very very important tests. Not the Totals. Also, it would be good to get TPO, Trab, Thyroglobulin and Thyroglobulin Ab.

Hopefully the scan of your thyroid on the 21st. will validate some of what is going on.

Please keep us informed. You definitely have a thyroid problem; that is a given.


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## Lovlkn (Dec 20, 2009)

I wanted to comment on your labs and how they fell instead of went up with the dose increase.

Most of us do not take our Levothyroxine before a lab - I suggest you do not either and also try to have the blood draw done around the same time or close to it.

Taking your levo with a full 8 oz of water will ensure it dissolves and you get the entire dose in your system - a sip to get it down does not work. Take your dose at a minimum 4 hours away from calcium, magnesium and iron supplements and also food. Try and take your replacement around the same time, although it has a long 1/2 life I still believe taking a pill too close to your lab will skew your results. I have found taking my levo in the middle of the night avoids all food and calcium interactions as I take calcium at least 2x a day. I have begun taking my Cytomel in the middle of the night as well and have alrady noticed a more level feeling during the day.

If you have a nodule tht can also skew labs.


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## ifthespiritmovesme (Jan 8, 2014)

Thanks for your replies! I learn more every day.

Andros-

"You definitely have a thyroid problem; that is a given." Thank you so much for that - I know some of my docs think I'm a hypochondriac. Thank God I have a couple who believe me. I'll be asking for those other tests when I see my PCP next.

Lovlkn - I know about the food interactions, haven't been taking my calcium at all, since I can't seem to remember 4 hours after Levothyroxine. I hesitate to wake up to take meds. once I wake up at night, I can't get back to sleep for hours, which really messes up my routine. Because of problems with sleep, I sometimes take the Levo at 7 am, sometimes near noon. Also, the full 8oz .....oops!! I have an app't. with my PCP on the 27th. and won't take the Levo. till after my blood is drawn. Still confused.- I had taken the Levo the day my blood was drawn. Having it in my system, shouldn't that have made the FT4 higher instead of lower?

From these labs...does it appear I am having a problem converting T4 to T3? Is this an autoimmune thing? Also - any connection to the pregnancy weight thing? I remember feeling at my very healthiest when I was pregnant. I stayed skinny for 10 years after, then slowly gained 70 lbs. till I went on Levo.

I sure wish it was simpler to figure this all out. I have problems getting overwhelmed with all the different information about all the various causes of thyroid problems. I used to be quick-witted, now struggle with a sluggish brain. No body hair left to speak of, and losing head hair by the handfuls. Have struggled with depression forever- if that has been caused by my thyroid, I am REALLY gonna be angry!! No energy, always feel exhausted...Sleep Apnea. About 40 years I've been sick, and no help because of that %^*)(*) TSH test. (and ignorant doctors).

Your opinions about what might be going on, considering my labs, will be so appreciated.

Add'tl info:

DX-

Hypothyroid, depression (with lethargy, lack of motivation, etc.), chronic myofascial pain, Sleep Apnea, Fibromyalgia, ADD, Carpal tunnel, Osteoporosis and high cholesterol.

Lots more probs, but this is just the DX

Other stuff:

B12 anemia - have to take it every day - levels skyrocked after going gluten free

Gluten Intolerant- blood test was negative for Celiac, but I cannot ingest it (causes mainly pain and stiffness in bones and muscles).

Multiple chemical and metal sensitivities

In bed, feeling weird sensations in body - like my kitty is walking around on me. Kinda like little marbles moving around under my skin - especially on legs.

Tinnitus - constant

Weird "seizure-like" feelings when I turn eyes to look at something. Like an electric shock in my head and eyes going goofy for a second. I even hear a noise - like whoosh-whoosh when this happens

Bad hot flashes and night sweats (total Hysterectomy years ago)

Shaky hands sometimes

Current meds:

Levothyroxine .050 mg once a day

Cymbalta 120 mg once a day (Just tried going down to 60 mg. FMS pain came back)

Tylenol 500 mg 2-3 times a day

Etodolac 300mg 2-3 times a day

Methylphenidate 60 mg once a day (I can sleep on this no problem!)

Tramadol 100 mg as needed, up to 3 times a day

B12 1000 mcg once a day

Colecalciferol (D3) 1000 units 2 times a day

Multivitamin and mineral supplement once a day

Calcium Carbonate 650 mg 2 times a day (can't seem to work this in)

Trazadone HCL 50 mg at night to initiate sleep

Cyclobenzaphrine - (don't have dose handy) also at bedtime for muscle contractions

Some statin - (type and dose not handy) at bedtime

Alprazolam 1mg up to 3 times a day, as needed

There are some drug interactions with some of these meds.so I have to be careful when I take what.

If you can offer any opinions at all, I would be grateful.


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