Hashimoto's, TSH levels, and desiccated thyroid
 

My current thyroid doctor said she wants to rely on my TSH levels to monitor my desiccated thyroid meds (because I am on desiccated and not synthetic).

My Free T4 and Free T3 levels are excellent, and I feel good, yet she recommended lowering my dosage because my TSH level is on the low side. I know Hashimoto's patients should not rely on TSH levels to stablize their meds, but she said it is because I am on desiccated, and if I were on synthetic it would be different. (?)

I'm on a lower dosage for two months, and then we will do more tests. I'll post an update then, but am wondering if anyone has ever heard of this?

I've been on Armour (desiccated pig thyroid) for a year. I feel good better than I was on the synthetic thyroid replacement. The warning I received about Armour is dosage is slightly different with each batch that is made. The other warning was it may make you retain weight.

Educate me, please, about the differences between the 2 and why a doctor would prefer to prescribe the desiccated over the synthetic.
I've been on the synthetic for probably about 10 years now, but my mother just told me her doctor has started her on the desiccated to try to give her more energy. She has never taken thyroid supplements before this.
On the synthetic, I have a thyroid panel done once a year. I've been on it so long at the same dosage with good results, my doctor doesn't think we need to do the panel any more frequently.
Hugs,

loisba:

Synthetic thyroid (Levothroid, Synthroid, etc.) have synthetic T4. Desiccated thyroid is real thyroid from animals and contains both T4 and T3. Most people with Hashimoto's thyroiditis have difficulty converting T4 into T3, thus need supplements of both. Cytomel is the only synthetic T3 that I know of.

I was on synthetic T4 for eight years, and I still went downhill because I didn't know I had Hashimoto's. Once I got on desiccated, the improvement was amazing!

QueenMary50:

You might also hear that desiccated robs calcium from your bones, which is untrue, unless you are on an EXTREMELY high dosage, which is dangerous in lots of ways.

I haven't had a problem with the variations in dosage, since the body naturally doesn't produce a steady, even stream of thyroid anyway. I lost 30 lbs. the first year on desiccated, which I had gradually gained over the eight years on synthetic.

Does your doctor go by Free T4 and Free T3 levels when testing you, does s/he rely on TSH levels, or are levels adjusted according to how you are feeling?

This is a great link re: Armour Thyroid/T3/T4, etc. :)
http://www.stopthethyroidmadness.com/

My husband is hypothyroid, and synthetic thyroid hormone works just fine for him. But it did nothing for me. So I guess different people will exerience different results.

I am on Armour thyroid now along with a tiny amount of Cytomel. When my thyroid is tested, I get a complete panel and the doc takes all the numbers into consideration when deciding on a dose. I feel remarkably better on dessicated than I did on the synthetics, and I have not experienced any weight gain or fluctuations in effectiveness.

I just wanted to say thanks for posting this.

My daughter will be having her thyroid removed probably sooner than later and we'll go from worrying about hyperthyroidism and everything that surrounds it, to hypothryroidism. She has grave's disease with goiter and grave's opthamopathy. She's also had three cases of hepatitis directly associated with hyperthyroidism...not to mention extreme mental/emotion lability depending on how hyper she is.

I just appreciate reading a bit about the meds that might been considered when she has her surgery. :)

Thanks again.

KD

I had my thyroid removed in two parts... half when I was 20, half when I was 40...
I take a mix if T4 and T3 to feel good. TSH is a non-test for me as I had pituitary surgery. I have hashimoto's. I had a follicular adenoma on one side and colloid nodules on the other...
Kimmydawn, do make sure that your daughter's surgeon is primo! The parathyroids must be left intact... I have just been left hypoparathyroid and finding that now is not fun at all!

HI KD,

I had my entire thyroid (actually they call it a near thryoidectomy) out 8 weeks ago. I have Hashi's but they could not control it with medicine. . I would take the meds and eventually each time I would go extremely hyper with such an emotional swing and twitching and it severely affected my muscles which affected my TOS. I also was affecting my eye muscles tremendously.

I also had a goiter 3x its normal size and that put pressure on the structures in my neck. The doc also said that I had a small windpipe and the thryoid was wrapping around it because of size. I had gotten so hyper that I made several trips to the ER.

Looking back I relaized that the thryoid was responsible for a lot of problems. More than I thought. The doc said my hashi's was unusual because the meds induced something called Hashi's toxicosis or thyrotoxicosis. But I knew I had a goiter 10 years back but they tested me and it was borderline. Then I forgot all about it. BUt looking back I see all this little signs that the thryoid was going bad and I did nothing about it.

I also posted about it in the TOS forum last week.

A great surgeon is key. Make sure they do atleast 2 thyroids a week/100 a year. The parathyroids must be protected.

I first 4-5 weeks I still felt like crap. Apparently it takes like 8 weeks for your own natural thyroid levels to subside before the meds take over. And it does get a little worse as I approach my period because the rise in estrogen binds to they T4 and keeps a little too much in your blood making you feel a little hyper still. But my levels are adjusting and getting better each day.

But now WOW!!! What a differencein 8 weeks. I am starting to have my life back. They tell me the muscle damage could take a year to heal but 8 weeks later my personality has returned and I actually want to go and do things.

I was very hesitant to have it out because all the docs said no no no we dont treat Hashi's that way. But one said to me you have given it 2 years to try to level off and it hasn't and the docs want you to be this way for however long it takes to burn itself out. Thats when I said I cant wait. And well it was the right thing to do for me.

I also posted about some scar stuff in the TOS forum that is helping my scar heal faster. Called cica care and you can get it on amazon. Great stuff.

So :hug::hug::hug::hug::hug: from a recent thyroidectomy patient.

I have Grave's Disease and after having radioiodine treatment have hypothyroidism. I only thing that I wanted to add is to be sure to let your doctor know how you are feeling when the adjusting/changing your medication. I was put on 150mcg of Synthroid and my TSH was within normal limits. I had palpitations, sweating, anxiety, etc. I had to tell my doctor three times in a row that the dosage was too high and my symptoms were not subtle. I am now on 125mcg and my TSH is on the low side of normal. I would have been miserable for years if I had kept my mouth shut.
Sarah

So Interesting to me!
 

Several years ago (and two moves later) I had a great endo doctor.

Now I do not and I get very concerned about my Hashimotos. My PCP takes care of my hypo thyroid now. I get concerned because I'm often not sure where the thyroid problems start and end and where the MS comes in.

I've always questioned whether I have true MS. Yes, I do have lesions but they are not greatly changed. I wonder if thyroid can cause lesions also?

My doc relies totally on the thyroid panel he does every 6 mos.

I'm thinking more and more that when I see my neuro in late January I will ask to see an edocrinologist who specializes in thyroid.

Sorting out health issues is very complicated isn't it.:icon_frown:

Tootsie

Thyroid levels and other symptoms
 

DianeD, me too! I went to an endo to try to sort out where some of my dizzy issues might be coming from. He immediately began lowering my Armour doses a little at a time (which didn't effect the vertigo at all). What did happen is increasing cog fog, joint and muscle pain. Scary and really noticable.

I stopped going there. Any doc who insists on changing your brand of thyroid from a natural to a synthetic..run..run away fast.

The natural contains both T3 and T4. T4 not bound to thyrogloulin is the only T4 available to be converted into T3. Estrogen creates more globulin and therefore lowers the effectiveness of oral thyroid.

Since the natural contains both, a person taking it does spend a portion of the day slightly on the hyperactive side. As the T3 is used, that evens out. So how you test actually does depend on the time of day blood is drawn.

There are other "T's" in the natural for which medicine has not yet found its biologic actiity. They don't know what they do. These are not in the synthetic.

I've been on Armour for 41 years now and am really protective when it comes to any doc who wants to mess with my levels or brand based upon their testing. I know how I feel!