# HELP!!!



## Jezahb (May 17, 2012)

So this is partially venting and partially asking for advice. Back in March I attempted to get a refill on my Armour Thyroid from my (new) PCP and she told me I needed to get my TSH and free T4 tested before she would. I had them checked and my TSH was around 4. Apparently this wasn't high enough in her mind to warrant a prescription, but after literally crying on the phone with her telling her that I needed the meds and 4 was too high for me she "compromised" and filled a script for me for 25 mg. I had previously been on 90 mg and doing great, had been on that dose for over a year and my hair was growing back, nails were getting stronger, I had energy etc. Flash forward to now. 3 months later and I have lost a ridiculous amount of hair (have a noticeable thinning spot in the front which is getting near impossible to camouflage), I have been strictly dieting but unable to lose weight, exhausted 24/7 and have had to go to the ER because my heart rate was sky high with very little physical exertion and wouldn't go back down. On top of this my periods have been super insanely out of whack, I don't even usually have them due to my birth control but recently I have been spotting nearly constantly. I can't even move or walk any distance without feeling like I ran a marathon and my HR goes up to 130. I convinced my doc to let me retest my TSH but what should I do if it still isn't high enough for her to prescribe a higher dose? Obviously 25 mg isn't enough, I feel terrible. I know I should go see a endocrinologist for this but that will take months to get in to see them while in the meantime I am going bald. I mean, does Hashi's ever "get better"? I never expected my doc to more than halve my dose of meds since all the stuff I had seen on Hashi's said it only ever gets worse. I am so confused why she felt that 25 mg was enough? I was on 90 mg because my TSH was around 6 in the Winter of 2013 while on 60 mg, so clearly my Hashi's is pretty terrible when it flares.

Also yes, I am sure it is Hashi's. I did see a Endo when first diagnosed in 2011 and they tested my antibodies and TGaB came back very high while TPO was, at that point, normal. I have also had to have an ultrasound recently as my Thyroid is now enlarged and nodular. That came back just saying to keep an eye on it.

I really need advice on how to convince my doc to treat me based on symptoms and not my TSH (I have a bad feeling my TSH may not come back super high) alone.


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## Lovlkn (Dec 20, 2009)

> I really need advice on how to convince my doc to treat me based on symptoms and not my TSH (I have a bad feeling my TSH may not come back super high) alone.


There is no convincing - it is time for you to find a new doctor.

Go in for a refill and tell them the dose you were taking - which with a TSH of 4 was too low. Bring your lab test that shows 4 and be confident - you are under medicated and it's time to move on and find a new doctor.


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## Octavia (Aug 1, 2011)

Were you taking 90 mg at the time your TSH was at 4? Assuming the answer is yes, this doctor needs to be fired. Wow.


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## Jezahb (May 17, 2012)

Octavia said:


> Were you taking 90 mg at the time your TSH was at 4? Assuming the answer is yes, this doctor needs to be fired. Wow.


I was. Hence why I broke down crying when the nurse called and said my doctor wasn't going to refill the prescription and wanted to "recheck in 6 weeks". This was after 3 years on Armour, original doc started me at 30 mg and we ended up needing to go to 90 mg because like I said, even at 60 mg my TSH went up to 6 at one point. I felt like the 25 mg she prescribed was literally just to shut me up, because clearly it is such a small dosage that my body is reacting like I am not on anything. My starting dose was higher than this! I just know my body isn't ok, all the symptoms including low body temp are pointing towards me being hypo and I am miserable.

I jut don't get her logic. At all. Hashi's doesn't cure itself, and if I had a 4 TSH while on 90 mg how did she think 25 mg would work?


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## Octavia (Aug 1, 2011)

Jezahb said:


> I jut don't get her logic. At all. Hashi's doesn't cure itself, and if I had a 4 TSH while on 90 mg how did she think 25 mg would work?


This defies logic.

How about a new doctor?


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## Jezahb (May 17, 2012)

Even more confused now. Labs came back fine. She didn't check TSH but only checked Total T3 and Total T4.

Results were:

triiodothyronine (T3), serum
Result: 156 ng/dL Ref Range: 60-181

thyroxine (T4) serum, total
Result: 12.2 ug/dL Ref Range: 4.8-13.9

So now I feel even more upset. She says this means my current dose is working fine for me, but I don't FEEL fine. My hair is clearly thinning massively, it hasn't been this bad since I was first diagnosed. Exhausted as well, and I can just feel my hormones aren't normal for what they were for so long on the 90 mg dose. I feel very disheartened right now, as I wonder if with labs like this if even an Endo would up my dose. I am so upset

I will also add I cannot lose weight, which is another thing making me believe my dose is wrong. I have been dieting very strictly for 3 months at 1300 calories a day and only lost 5 lbs right at the start and then stopped losing completely. Makes no sense, with the weight I am at and my calorie intake I should be losing almost 2 lbs a week but haven't lost a lb (actually regained 1 lb) in over 2 months.


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## Jezahb (May 17, 2012)

Back on 60 mg, was able to convince doc that when I saw her a year ago and my TSH was 1.9 I felt WAY better which convinced her to try and get my TSH back there. Also sitting in front of her with visibly thin hair and half my eyebrows missing may have played a role in her decision, hard to deny that my Hypothyroidism is bad when the symptoms are literally staring you in the face. She may up the dose to 90 mg again after we do another blood test in 6 weeks, if I am not back to under 2 she will up the dose. Also got referral to endocrinologist (actually a thyroid center staffed by a bunch of specialists).

Now for bad news, my thyroid is very enlarged with a large nodule/lump. Lump was actually visible when doc pushed on sides of my gland, it is so large that doing so actually created a visible lump on my throat. So ultrasound is scheduled and possibly will need a biopsy. Scary stuff


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## joplin1975 (Jul 21, 2011)

I'm really glad you are getting an ultrasound and possible biopsy. That's a very good move.


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## Octavia (Aug 1, 2011)

I'm so glad you stood up for yourself!!!


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## Jezahb (May 17, 2012)

joplin1975 said:


> I'm really glad you are getting an ultrasound and possible biopsy. That's a very good move.


Yea, I am a bit worried just because I don't want to have to have my thyroid removed quite yet, I am not even 30 so it is a scary thought. I know most people who get diagnosed as young as I was (25 at diagnosis) end up having it removed eventually, but I was hoping to go a little bit longer with it. Sounds like hypo symptoms are even harder to control once it is gone



Octavia said:


> I'm so glad you stood up for yourself!!!


Me too! She didn't put up much of a fight, I think when I brought up that the dose I was on and the TSH "goal" that was set for me was put in place by an endocrinologist she didn't have much room to argue. She is just a general practitioner, she really had no place messing with my dose to begin with and she owed it to me to fix what she caused. I don't know if 60 mg will be enough, TSH only dropped from 4.7 to 3.6 on 30 mg (thought it was 25 but guess it was 30) so with that math doubling it will only get me to 2.6 or so...not low enough to feel good. Great news is, she is also planning to go by my antibody levels this time so if I "close" to my goal TSH but my antibodies are still high she said she will still up the dose. Overall, she seemed cooperative once I explained everything to her and showed that I did my research. Lab "normal" isn't Hashimoto's sufferer "ideal" and that is the biggest thing she had to get.


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## joplin1975 (Jul 21, 2011)

> Sounds like hypo symptoms are even harder to control once it is gone


Ummm...no, not necessarily.

The issue with surgically induced hypothyroid is that there was many ways to treat it, but many, many doctors look only at levothyroxine. And, many doctors only look at TSH.

When you find a doctor who will treat based upon free t4 and free t3 results and who will consider t4 meds, t3 meds, AND desiccated medication, the vast majority of people with thyroid dysfunction feel significantly better without a thyroid.

I wish I had had mine out so much sooner.


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## jenny v (May 6, 2012)

I, too, wish I had fought harder to have mine out sooner. I was diagnosed in my 20s and didn't have it out until my 30s and I suffered needlessly for over 10 years. It's so much easier to control my Hashi's now that the target of the attack is out and not fighting back and dumping random amounts of hormones into my system, lol.


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