# Newbie here need help!!



## mrskemp07 (Jun 16, 2014)

Hi everyone,

I type this in tears it's been 5 yrs since my initial dx of Hashimotos and after numerous medications as well as physician changes I am at the end of my rope. I had a R side Thyroidectomy in 2010 and am on 120mg of Armour thyroid. I am in pain throughout my joints and sometimes feel as if I'm wearing a weighted body suit. For the past few weeks I have been more fatigued than ever sleeping between 14-20hrs in the day. I AM NOT DEPRESSED!!! I cannot convey that point any stronger although me newest Dr seemed to think so. I'm not sleeping bc I want to it is bc my body won't allow me not to do so. My last FNA was 2009 and they did an ANA screening last year which turned out to be negative 5/14 my TSH was 9.18 on medication. I have the feeling of something in my throat as well as a hoarse voice that comes and goes. I'm not sure what's going on with me but I am extremely frustrated. My current ENDO recommends I exercise daily, a thought I'd welcome if I could lift my head to get out of bed. I don't want an attack from anyone here just some helpful advice or suggestions on test or treatments I could request. If you have similar story maybe share what you have done or just some encouragement. It would feel great to know I'm not alone in this and that there may be hope.

Thanks


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## joplin1975 (Jul 21, 2011)

Oh, you don't sound well.

Do you have any other lab numbers (with reference ranges, please) to share? TSH, particularly when on desiccated hormone, is very much not helpful for dosing purposes.


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## mrskemp07 (Jun 16, 2014)

TSH labs are basically what they test me on no other testing has been done beside CBC by my newest physician. I had a Dr I saw from 2010-2012 whose practice just abruptly closed and unable to retrieve my records. I had to basically start from scratch, TSH on 8/31/11 9.89; 100mcg of Synthroid, TSH 8.96 3/05/13 on 90mg Armour Thyroid , TSH 2.61 8/8/13 on 90mg Armour Thyroid, TSH 9.18 5/14. You have had some very high numbers I see, I've never had any in that range but I'd assume the cancer may have played a part in that. Do you have any other test I can suggest to my Dr. I am being referred to a Rheumatologist also.


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## CA-Lynn (Apr 29, 2010)

Rheumatologist would be an excellent place to start.


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## joplin1975 (Jul 21, 2011)

My numbers were really high because I was undermedicated.

I would ask for TSH, free t4, and free t3 for dosing purposes. It looks like you are due for another ultrasound, too. Also, just to be complete, I would consider having antibodies run again, to include TPO, TSI and perhaps thyroglobulin.


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## Airmid (Apr 24, 2013)

You sound like me 5 years ago. hugs1

Downside is, now it's 10 years with all of this and it's gotten worse. Upside is that I finally am going for a surgical consult and hopefully will get the rest of mine removed. If I had known 6 years ago that they were going to find cancer/Hashimoto's during a surgery for something else, I would have told them to take it all. I have several family members and friends who have done just fine on thyroid hormone alone, some for decades.

Personally they have had me up to 250 mcg of Synthroid with my TSH going no lower then 8 and usually sitting in the teens, though it does swing into the twenties sometimes even on that dose. Then going hyper on that dose, having to stop then start all over again. I totally get the frustration and feeling like nothing is being solved.

It's been long enough that I would say you need all new tests for your thyroid including an ultrasound and a new ANA test. It's been a year since that last one, stuff can change and I've met people with autoimmune disorders whose ANA wasn't high the first time but always high after. Both an Endo and a Rheumatologist would be good people to see to help sort out what is causing what.

Recommending exercise is all well and good, but when your body feels as though it is full of lead and you're walking through sand you just don't always have the ability to go do that. I've found things I love to do that help me keep off the weight gains from this lovely disorder off. They don't have to be an actual workout in the strict terms. Rather things you want to do - such as gardening, volunteering, going on nature walks (since those definitely aren't sprints), swimming. It does help with energy levels after a while and if your anything like me sometimes I get rather hyper after running around doing stuff and pace, lol. Can't seem to win though I'd rather have the "very hyper, want to do stuff, can't sit down" to the "I can't move and I feel bad about it".

Push for new tests including: Full thyroid panel with frees, antibodies and anything else you can get them to run. An ultrasound. A new ANA.


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## Andros (Aug 26, 2009)

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/health-medicine/understanding-thyroid-why-you-should-check-your-free-t3
(Copy and paste into your browser)

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm
(Copy and paste into your browser)

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

My goodness!! Have you ever had an ultra-sound of your thyroid?

And you do seriously need FREE T3 and FREE T4 lab tests.

Info above and welcome to the board!


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## mrskemp07 (Jun 16, 2014)

Thank you all so much for your insight, I will be requesting these test at my next apt! It is encouraging to have someone who has been there! I'll keep you posted!!


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## jenny v (May 6, 2012)

Ugh, hang in there! When you're hypo it can be so hard sometimes just to push through it and function and it can cause the most random symptoms (exhaustion, aches and pains, etc.). I will second everyone and say push for the Frees (you can't dose Armour by TSH, it has to be dosed by the Frees) and definitely try to get an ultrasound to see what's going on in there.


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## mrskemp07 (Jun 16, 2014)

I will just got my referrals approved and am waiting on my appointments! Thank you all again very much!


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