# Is this the next step? UPDATE: 2/6 - Confirmed Hashi's



## Love2RunLong (Oct 21, 2014)

hello! I've been posting on the newbie page, but I know that I'm at least hypo.

My TSH result came back at 7.8 and my free t4 was 0.9. (this was all that was tested, and I was also not given any ranges).

I have a "follow up" appointment with my PCP on Tuesday. the just called me 2 days ago and told me my blood work was abnormal and I went out and got my results.

Is it "unusual" at this point to ask my PCP to test for Antibodies? My mom has Hashi's and I want to know if I have to it too. I just don't know if this would be a standard next move for the doc, or if they will just put me on meds, and it will be the end of it. I have a hard time speaking up for myself at the doctors (this guy always makes me feel stupid, and yes I plan on looking for a new doc) and don't want to look like I'm doing his job (although, I know better. we really do need to be our own advocates).

What do you think? are the antibody tests still important at this stage? I'm having a hard time understanding and don't want the doc to catch me off guard with BS.

Thanks!


----------



## ssMarilyn (Nov 15, 2013)

Love2RunLong said:


> hello! I've been posting on the newbie page, but I know that I'm at least hypo.
> 
> My TSH result came back at 7.8 and my free t4 was 0.9. (this was all that was tested, and I was also not given any ranges).
> 
> ...


*Your TSH is way too high, but most importantly you need the FT3 test done. Your FT4 numbers are way too low... IN THE BASEMENT! Your MD should have automatically tested you for Hashi as well. You need to be assertive and request these tests. You definitely need some medication, Armour is best, but your MD might be behind the times like most are. REMEMBER - THEY WORK FOR US.*


----------



## joplin1975 (Jul 21, 2011)

You should be gathering as much information as possible and that would include antibodies testing, as well as an ultrasound.


----------



## Lovlkn (Dec 20, 2009)

> My TSH result came back at 7.8 and my free t4 was 0.9. (this was all that was tested, and I was also not given any ranges).


Yes, you are very hypo.

Most on this board feel best with a TSH around 1 and Free t-4 in 3/4 of range.

My FT-4 range is (.82-1.77) or (.60 - 1.6) (.69-1.76) . I never realized till now how often my FT-4 range changes on my lab's. WOW. This just reinforces why ranges are so important.

You should definitively request antibodies tests, TPO, TSI and Thyroglobulin Antibody, as well as an ultrasound and I also agree that a FT-3 test would be helpful, although it is likely low with your current lab's.


----------



## Love2RunLong (Oct 21, 2014)

Thank you so much everyone! I asked for antibody testing, but the doctor ran the Thyroid Cascade instead. It only tests the "next" thing if the test before was abnormal. This is obviously a terrible way to test. So I only got my TSH and ft4 tested. It didn't go any further.

I will demand more tests when I go in tomorrow, and hopefully the doc will refer me to someone more experienced with this, and if he doesn't plan on it, I'm going to ask him to refer me to someone. He didn't even think I needed the thyroid test and kept asking me "WHY" I thought I needed the test. This is the 2nd time I've correctly diagnosed myself (first time was with Celiac).

thanks everyone! I'll update after tomorrow's appointment.


----------



## pixie (Jan 17, 2015)

You definitely need to get tested for antibodies, especially if you have Celiac Disease. Those with one autoimmune disease are more likely to have others (from what I have read).

Good Luck!


----------



## jrohrigj (Aug 30, 2012)

You might have to order your own antibodies test online if the dr will not. My dr only checks tsh so I order online when I check my thyroid numbers.
www.healthonelabs.com
www.labsmd.com
www.mymedlab.com
www.health-tests-direct.com


----------



## Love2RunLong (Oct 21, 2014)

thanks! I hope it doesn't come to it, but we have a LabCorp right here in town, so I think I could get what I needed on my own.

Appointment is at 1:50 today. I'm oddly excited? I've just known I've been having issues for awhile and it's always a relief to finally get some help. I know the medicine can be a royal pain, but I'm ready to do whatever I need to do to start feeling good again!


----------



## jrohrigj (Aug 30, 2012)

I wish I had a LabCorp here in town. The nearest one is a couple hrs away. Used to be a quest diagnostics a couple blocks away but they are gone. They are now about the same distance as LabCorp.


----------



## Love2RunLong (Oct 21, 2014)

*Okay, So yesterday was my doctors appointment. *

*He came in and said "I know why you're tired! You're thyroid has stopped working and you are hypo." (LOVE how he thinks this was his discovery.. LOL. I'm the one that asked for the blood work to be done.*

*I then asked (for the second time) if I could do the antibody blood work tests because I want to know if I have hashi's or not. I'm not waiting years to hear yes or no. At first he says yes, he will do them, so I didn't say anything else. Although he did say "You are Hypo.. it doesn't matter what caused it" *

*He feels my neck and determined that it felt a little enlarged and is sending me for an ultrasound (that's tomorrow).*

*He is going to start me on 50mg of Levo, and have me come back in a month or so to check up on everything. Again I asked about the antibody blood work. (I had to ask 4x total this appointment) and he said I could just do it when I came in March. Uh?? Why would I do this after I've been medicated? I want a baseline to see where I've started. So I demand it yet again and he's like "You're just going to have to take off work twice. Seems silly to me" NO. I am already here. (I left the appointment and went straight to the lab and had the test done. I figure you have antibodies or you don't. No need to fast? he said I didn't need to, as well) *

*Oh and the only test he ran was TPO. That was it. UGH!!! *

*So it's pretty safe to say that I don't feel super great with this guy, but i'll start the medicine and see where we go from here. Next appointment I may ask to be transferred to someone who deals more with the thyroid. "it doesn't matter what caused it!" Really?*

*I'm losing faith in doctors really quickly... *


----------



## Love2RunLong (Oct 21, 2014)

Oh, also... the doctor never called in my prescription. How annoying.

I called the office today and wouldn't you know? He's off today!

The receptionist told me she'd "see" if another doctor could call it in, and call me back.

This is ridiculous. I guess I'm angry because this is not the first time with these people. I really need to find a new doctor as well. This practice isn't working for me.


----------



## Love2RunLong (Oct 21, 2014)

I've now made a second phone call into the office and they still have not gotten my medication sent to the pharmacy. They keep telling me someone will call me when something has been done and I called at 9am, and then 1pm.

I'm calling once more at 4:15 and then I'm going in tomorrow after my ultrasound and demanding they give me script on paper if it hasn't been taken care of. I am blown away at how incompetent these people are.


----------



## blablabirdie (Feb 4, 2015)

I don't have any words of wisdom, just that I am in a similar boat although your doc seems to be a mite better, as mine told me 'I should not try to connect all of my symptoms to my thyroid, as the symptoms are diffuse and my numbers are within 'normal' --- they are very similar to yours and I tested positive for Hasimotos with TPO over 300.

Wish I knew where to start looking for an OK doc who knows a bit about this....


----------



## joplin1975 (Jul 21, 2011)

I'm sorry you are having such a hard time. Did you eventually get the prescription?


----------



## Love2RunLong (Oct 21, 2014)

After my third call the woman pretty much said there wasn't much she could do. The other doctor would have to "review" and then call it in. I was beyond unhappy.

The other doctor (as in not my doctor) called me at 6pm last night and told me there was no record of my doctor putting me on any medication. She told me there was absolutely nothing written in my chart about meds, so she didn't feel comfortable with 50mg. She said she'd call in 25mg because she was confused about there being two TSH results on the paperwork. I told her I was concerned about that too, but he never said anything and I assumed it to be my Free T4 with a typo on the sheet.

After I hung up with her, I was even more angry. Not at her, just that my doctor didn't bother to note ANYTHING in my chart. I don't know what we could have accomplished at my follow up appointment in march if he didn't even know what dose of meds I was on. She called in 25mg, but I never picked it up.

This morning my doctor's office called me and said that he DID want me on 50mg, and that they would be sending the script over to the pharmacy. I guess i'll see tonight after work if they did it or not. I am not spending my day calling over and over again.

My ultrasound is at 3pm. Not really sure what to expect here, but I know they won't be able to tell me anything.


----------



## Lovlkn (Dec 20, 2009)

> I am blown away at how incompetent these people are.


Yes - this is the way many doctors offices are.

When you go to the pharmacy - if both the 25mcg and 50mcg prescription have been filled, buy them both. Start your inventory while you are dialing in your replacement dose.

Good for you demanding they run the antibodies test on you!! hugs4


----------



## Love2RunLong (Oct 21, 2014)

Okay, so I had my US at 3pm. It seemed like a whole lot of measuring and clicking but I have no idea what's normal. I did glance at the screen and saw what looked like shadows of perfect round shapes, but again, I'm not sure what they were looking at at the time? When I got up to leave, the screen had an image of a lot of red and blue coloring to it.

So, it'll be 3-5 days before they get the results to my doctor. I don't know if he will call me earlier, or if he will just wait to go over my results with me at my 3/17 follow up appointment. I also called to see if my TPO results were in, and they were not.

So, i'll be starting my meds tomorrow! ( I FINALLY HAVE THEM!)

i'll update when I know more!


----------



## psyoxy (Feb 4, 2015)

Having the right team of doctors is SO important!!

I just spent almost an entire year dealing with a very similar situation you are in before I finally got fed up with my doctors and my endless symptons, and switched.

I started with my new team in January. After endless blood tests and 2 specialist, I finally got my diagnosis of Hashi's with PCOS.....and they are doing more tests just to be thorough. I have already started treatment!

It was so wonderful to finally feel like I was being taken seriously. If you are able to, I strongly recommend finding a new doctor ASAP. Get copies of your bloodwork and just find a new PCM to start.


----------



## Love2RunLong (Oct 21, 2014)

Thank you! I'm going to try to see if I can find a Naturopath to work with since from what I'm reading people seem to have the best luck with them. I'm just concerned about my insurance!


----------



## Love2RunLong (Oct 21, 2014)

Just got the call from my doctor. They said my TPO and ultrasound confirmed Hashimoto's. I didn't even think to ask the result number, but i'll get it on paper work next time I get out there (probably president's day)

They said my thyroid was not englarged, just showed that I had Thyroiditis.

Not really sure where to go from here. Do I change my diet? I am already gluten free because of celiac, but still feeling awful. I took my first Levo pill today.


----------



## joplin1975 (Jul 21, 2011)

If you are already gluten free, then doing anything more significant probably won't help. I mean, yes, avoid sugar and processed foods, etc etc etc, but right now you need to let the medication do its thing. Keep in mind it will take WEEKS to see a difference. Patience is hard, but it's important.


----------



## pixie (Jan 17, 2015)

Love2RunLong said:


> Thank you! I'm going to try to see if I can find a Naturopath to work with since from what I'm reading people seem to have the best luck with them. I'm just concerned about my insurance!


Call your insurance and check, and make sure they read the fine print. I called mine and was told it would be covered by out of network reimbursement. The next week a coworker called and she was told "No, absolutely not..." She explained that I had called last week and was told yes, so they put her hold and when they came back they said yes. So, if they say no at first make them double check.


----------



## Love2RunLong (Oct 21, 2014)

Thanks everyone...

TPO results came back at 965.

Unfortunately I had a bad reaction to my Levo, and had to go back to the dr. I was getting chest pressure/tightness/pain. He took me off for a week and wants me to start again Saturday morning on 25mcg every other day to see if it helps.

I've been back off the Levo for 6 days, and the headaches, puffiness, and other crap is already coming back. I'm anxious to start back on it again and hope that I don't have any more adverse affects.

Seeing an Endo on 4/2. Hope she's better than my doc!


----------



## Love2RunLong (Oct 21, 2014)

Just an update:

Followed with my doctor since it's been about 6 weeks since my diagnosis and my TSH is now at 2.2

He is keeping me on 25mcg a day and told me to come back in 6 months.

Only problem? I feel NO different at 2.2 than I did at 7.8. I don't understand. I thought I'd feel much better at this point. Can it take a while of being on the medicine for this to happen?

Of course he ONLY tests TSH and nothing else, so if I'm a poor converter, I'd never know.

Still seeing my Endo on 4/2. What questions can I ask? Should I ask her to test my free T's ?


----------



## joplin1975 (Jul 21, 2011)

I would definitely ask if they test frees.

25mcgs is a teeny little dose. It could take a lot longer, but a lot of us (not everyone) feels better with a TSH around 1. Again, it needs to correlate with the frees, too. But, I would also ask the endo about a higher dose...maybe to 50mcgs and or alternating 25 and 50mcgs doses.


----------



## Love2RunLong (Oct 21, 2014)

But do you think they'd up my dose if my TSH is 2.2?

I originally started on 50mcg but had pretty bad adverse affects and was taken off and introduced at a 25mcg EOD, and then every day. I was shocked that 25mcg could reduce it that much. Could it be a hashi's type swing making it that low? or did the meds really work in just 2.5 weeks? (I didn't start taking meds every day until 3/1 so it's only been 16 days).

I'm just worried the endo won't see a problem with my TSH being at 2.2.

I will still ask however to see if my FREE T's can be tested.

Also, I was only ever tested for TPOab but nothing else. I did have an US and they said it was Hashi's but everything else looked fine. Do I need any other antibody tests run, or am I good here?


----------



## joplin1975 (Jul 21, 2011)

I would also ask about TSI, since you had such a bad reaction (I couldn't tolerate 25 mcgs b/c of TSI).

It can take some time to get used to the meds. You might be surprised at how much easier alternating 25/50 would be now that you've been on the med for a bit.

Personally, if all my doctor tested was TSH, I wouldn't even bother having the conversation with him/her. You won't get anywhere, so what's the point?


----------



## Love2RunLong (Oct 21, 2014)

Not sure what you mean about the doctor?

I posted on here (not sure which thread) about not following up with my PCP and just waiting to see my Endo on 4/2 but was told it was a bad idea and to follow up with my PCP, so I did.

I know my doctor is AWFUL. I really do. Yesterday's appointment was a total waste, but I wanted to see where I was at before seeing the Endo.

I am hoping the Endo is better than my PCP who seemingly knows nothing about treating thyroid conditions.


----------



## joplin1975 (Jul 21, 2011)

I was saying if the endo only tests TSH (which is a very, very real possibility), then there's no point in asking about a dosage increase or anything like that because, ya know, you aren't going to get any where.


----------



## Love2RunLong (Oct 21, 2014)

Ahhhh! I see. I don't know what she will do because I have never met with her before.

I'm keeping my fingers crossed SO HARD she's a good one.


----------

