New Hashis in August & struggling to get a Rx?!
Mage2001
Posts: 6 Member
Hi all
I am beyond frustrated but I will try to give a short background - I have been trying to lose weight - actively logging and exercising(4x a week for an hour - on average), between March and end of July 2014. during 4 months gaining and losing the SAME 5 lbs, I gave up. During March -July, monthly saw a weight loss doc and nutritionist to assess/document my eating/exercise habits. According to them - im doing great!
The lack of weight loss is not my only symptom, fatigue, brain fog/forgetfulness, irregular/painful periods, joint pain (at times), migraines, TMJ flares (where my jaw locks, and I have to work at loosening it). The severity of these have been increasing over the last year. Hence seeing an endocrinologist at the end of July.
She tested me and my antibodies are in the 140's but TSH is spot on (as tested by the weight loss doctor). Other things (except ferritin, which is LOW) rest of the blood work is relatively normal. However she didn't retest TSH because that had been tested and shown normal by regular doc. Her plan ? - since my TSH is normal there is nothing she can do for me but sure - I have Hashimoto thyroiditis. However, for my irregular/painful periods - she prescribed metformin which can help with my testosterone (which are normal!!!!!!!!!!) and get my periods regular... Hmm... thanks for treating one out 10 symptoms.
Frustrated (of course) I made appointment for a second opinion with another endo. more blood tests, and a similar treatment plan... except he would consider prescribing thyroid meds but wants to get my BMR/RMR tested, because he is curious if it will increase IF he prescribes it.
I'm cool with this - in theory if he prescribes this. however, I have been searching ALL over the stinking place - and the only places that I can find that do such things are fitness centers with cheap equipment with 'technicians' less qualified than I am to perform and interpret the tests. (I am not qualified!) so... here I sit feeling frustrated, anxious, thinking that the thing that will help me is NOT going to be prescribed because ... (help me out here - I got nothin')
One doc prescribed metformin based on my menstrual symptoms, but wont for the thyroid because ????? IThis does not make sense.
The last two days my hair is falling out (this is surprising), my shoulders and elbows are beyond achy, and I am teary and ridiculous. I struggle to get my *kitten* outta bed whereas 3 months ago I could pop out of bed at 430 AM to work out. This started out as a question as to why I wasn't losing weight and I had what I thought were unrelated symptoms. NOW the question is why won't they treat the disease they KNOW I have and I show symptoms of having? All of my symptoms, can be explained by the Hashi's - ...sigh.
- Things I have asked - (especially the second endocrinologist)
- to test t4, t3 and rt3 - no - not necessary because my TSH is normal.
- how do you know my body is using all the hormones the way I need to by TSH alone? Answer - we don't - but there is no proven way to know that. (I know that's not true- why don't they??)
- why cant you prescribe thyroid meds based on the multiple symptoms I have ? that's not the recommended method (BY WHO?!?!?!?!)
- why do I have to wait until my thyroid is damaged enough until TSH rises before anything is done? I have to get sicker, fatter, slower, and stupider (reference to the brain fog) before anything is done? That's just how we treat hashimoto thyroiditis.
I sit here banging my head against the wall. I feel like the Hulk before he turns into the Hulk, barely holding on... almost ready to smash everything in sight!
So - what the hell do I do now!? Any suggestions? questions?
Should I just go to a fitness clinic shell out the 200 bucks to see what I know will be inaccurate result so I can potentially get the meds?
What can I be doing? - I've cut down on gluten - Its a work in progress/transition. trying to cut back to 1450 calories a day, when I don't exercise. I have started taking iron supplements, Vitamin D supplements, and a multi vitamin. Anything else?
(sorry - the brief background isn't brief and I still left out a lot)... sigh
Any insight would be very much appreciated.
I am beyond frustrated but I will try to give a short background - I have been trying to lose weight - actively logging and exercising(4x a week for an hour - on average), between March and end of July 2014. during 4 months gaining and losing the SAME 5 lbs, I gave up. During March -July, monthly saw a weight loss doc and nutritionist to assess/document my eating/exercise habits. According to them - im doing great!
The lack of weight loss is not my only symptom, fatigue, brain fog/forgetfulness, irregular/painful periods, joint pain (at times), migraines, TMJ flares (where my jaw locks, and I have to work at loosening it). The severity of these have been increasing over the last year. Hence seeing an endocrinologist at the end of July.
She tested me and my antibodies are in the 140's but TSH is spot on (as tested by the weight loss doctor). Other things (except ferritin, which is LOW) rest of the blood work is relatively normal. However she didn't retest TSH because that had been tested and shown normal by regular doc. Her plan ? - since my TSH is normal there is nothing she can do for me but sure - I have Hashimoto thyroiditis. However, for my irregular/painful periods - she prescribed metformin which can help with my testosterone (which are normal!!!!!!!!!!) and get my periods regular... Hmm... thanks for treating one out 10 symptoms.
Frustrated (of course) I made appointment for a second opinion with another endo. more blood tests, and a similar treatment plan... except he would consider prescribing thyroid meds but wants to get my BMR/RMR tested, because he is curious if it will increase IF he prescribes it.
I'm cool with this - in theory if he prescribes this. however, I have been searching ALL over the stinking place - and the only places that I can find that do such things are fitness centers with cheap equipment with 'technicians' less qualified than I am to perform and interpret the tests. (I am not qualified!) so... here I sit feeling frustrated, anxious, thinking that the thing that will help me is NOT going to be prescribed because ... (help me out here - I got nothin')
One doc prescribed metformin based on my menstrual symptoms, but wont for the thyroid because ????? IThis does not make sense.
The last two days my hair is falling out (this is surprising), my shoulders and elbows are beyond achy, and I am teary and ridiculous. I struggle to get my *kitten* outta bed whereas 3 months ago I could pop out of bed at 430 AM to work out. This started out as a question as to why I wasn't losing weight and I had what I thought were unrelated symptoms. NOW the question is why won't they treat the disease they KNOW I have and I show symptoms of having? All of my symptoms, can be explained by the Hashi's - ...sigh.
- Things I have asked - (especially the second endocrinologist)
- to test t4, t3 and rt3 - no - not necessary because my TSH is normal.
- how do you know my body is using all the hormones the way I need to by TSH alone? Answer - we don't - but there is no proven way to know that. (I know that's not true- why don't they??)
- why cant you prescribe thyroid meds based on the multiple symptoms I have ? that's not the recommended method (BY WHO?!?!?!?!)
- why do I have to wait until my thyroid is damaged enough until TSH rises before anything is done? I have to get sicker, fatter, slower, and stupider (reference to the brain fog) before anything is done? That's just how we treat hashimoto thyroiditis.
I sit here banging my head against the wall. I feel like the Hulk before he turns into the Hulk, barely holding on... almost ready to smash everything in sight!
So - what the hell do I do now!? Any suggestions? questions?
Should I just go to a fitness clinic shell out the 200 bucks to see what I know will be inaccurate result so I can potentially get the meds?
What can I be doing? - I've cut down on gluten - Its a work in progress/transition. trying to cut back to 1450 calories a day, when I don't exercise. I have started taking iron supplements, Vitamin D supplements, and a multi vitamin. Anything else?
(sorry - the brief background isn't brief and I still left out a lot)... sigh
Any insight would be very much appreciated.
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Replies
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I'm sorry you are going through this. To almost anyone with Hashi's all of this sounds very familiar. Unfortunately your doctors are just completely wrong about TSH. It cannot tell them everything they need to know. They have to look at T4 and T3 and put it all together. Very few doctors understand this and Endocrinologists are just the worst in my experience. Keep looking until you find a doctor that will check your thyroid hormones (T4 and T3). Even then it can be a struggle to understand all the ups and downs of Hashimoto's.0
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I know how frustrating it is. We all have been there unfortunately. It took me 5-6 years of suffering before finding a doc to listen to me, run tests, and get on meds for the first time. 3 years after that I found out I had Hashi's and had my meds doubled. And 3 more years were wasted feeling like crap before I found a doc that let me try natural desiccated thyroid meds instead of levo or synthroid...which is when I finally started to feel better.
So all in all - it took me personally almost 12 years to get proper treatment. Don't give up yet. Stuck to our ins and find another doctor. You might have to go through several of them. (((Hugs)))0 -
I meant to say stick to your guns lol. Not "stuck to our ins" hahaha0
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I'm with you Mage2001. I was told I have Hashimoto's Thyroiditis as an aside when I was seeing an endocrinologist about a pituitary tumor. The endo only tests me for TSH and T4 and says I am fine even though my antibodies are increasing as is my TSH. He also says that he would only precscribe synthroid which did nothing for me in the past and that only if by TSH climbs to 10. It was 4.08 last month when I tested.
I am scheduled for a second opinion in early November.
Keep persevering. I wish you well.0 -
Thanks for the support and the keep trying. I spoke with the doc about the bmr test and he was just curious about it, and since I can't find a reliable one, and one that would be covered by insurance, he prescribed levo (which is the generic version of synthroid right?) I've been on it for about 10 days, and I actually do feel better, hair stopped falling out as much, the joint pain is gone, and the swelling in my hands - under control - for now - I think.
- time will tell. And I realize I haven't been diagnosed with hashis' for very long, but its stories like yours above - that showed me the right path as far as finding a doc who is at least willing to try things, (within his comfort zone)... and see how things go.
- we'll see if the levo is effective long term. I seem to recall it making a difference for some and not others. it seems to be doing something for me. we'll see, we'll see.0
