Can't regulate thyroid

[Deb 27]

Ok, this is a very smart group of folks, so I am thinking you may have an answer or suggestion for me. I have Hashimoto's, low thyroid. Here is what is typical for me.
on a dosage of 110 mpg I will have a low thyroid with low T3, T4 and a TSH above 4
on the next dose, which is 125, I will have a TSH of 0.117 but my T3 and T4 will be normal.

Why can't my TSH go somewhere between 4 and 0.117 ( and sometimes lower)  They docs like to see a TSH of 1-2 and consider this being in control but we can't get mine anywhere near there.

And, if they do a split dose, like alternating the higher dose with the lower dose doesn't work either. And, worst of all, I don't feel great at either dose. At the low dose, I feel tired and the higher dose sometimes, not always, I can get restless.

Also, the natural stuff doesn't work right for me like Armour, WP and Natural Thyroid. Tried those. I am in thyroid heck.

Any suggestions?

[irish]

That is the nature of the beast for some reason. It is really hard to get the TSH in the right place. When I was on .125 mgm in Feb my TSH was .022 which puts me in the hyperactive area....just barely. We decreased my dose to .112 and 2 months later the TSH was 8.5 and I felt like heck. A few years ago I had a similar circumstance and when I decreased the dose I didn't get the big rise in my TSH.

I actually think the docs want our TSH too low as in below 1 or 2. I don't like it that low but have to argue the point with the docs and get sick of it.The T3 andT4 are another story and there are other meds that can be taken to help that. An endocrinologist could help on the. I haven't had problems with the 3 and 4. Just takes a lot of testing at times. Seems to go in streaks,. Good luck. Irish

[eija]

That is the nature of the beast for some reason. It is really hard to get the TSH in the right place. When I was on .125 mgm in Feb my TSH was .022 which puts me in the hyperactive area....just barely. We decreased my dose to .112 and 2 months later the TSH was 8.5 and I felt like heck. A few years ago I had a similar circumstance and when I decreased the dose I didn't get the big rise in my TSH.

I actually think the docs want our TSH too low as in below 1 or 2. I don't like it that low but have to argue the point with the docs and get sick of it.The T3 andT4 are another story and there are other meds that can be taken to help that. An endocrinologist could help on the. I haven't had problems with the 3 and 4. Just takes a lot of testing at times. Seems to go in streaks,. Good luck. Irish

Deb, I have a similar situation. Only, that if my TSH is within "normal" as it 0.3-4 (I guess the range was something like that) my T4 and T3 are mid-range, but I feel crap, totally depressed and (if possible) even more tired than now. Finally it was my shrink that told me he wants to try upping my t4 and T3 towards the upper limit of the range. That's when my TSH went so low they couldn't measure it, but I felt much better.

Irish, in Finland doctors - at least most of them - stare at the TSH as if it was the Bible itself. Once I was at normal range with TSH, but towards the lower limit, my free T4 was 17 I think (range about 10-20), and one dr decided I was going hyper and my dose had to be adjusted. Well, the TSH was corrected but my fT4 dropped significantly. So did my health. Now I'm avoiding any testing because since retiring I don't have my understanding doctor anymore and I don't want to face some jerk who again will drop my dose so that I'll get even worse with everything in my life.

The "other" meds for T3 and T4 are very difficult to get in Finland, too. The supervising instant has actually taken away licences from doctors who have been rx'ing those meds! It's just crazy here


DEB, just an idea... They say coconut oil helps thyroid function (among many other things). Maybe that would help you? I think it's pretty harmless to try. The dose would probably be something around 2-4 teaspoons per day - but start slowly, it may cause diarrhea when taken too quickly.

[Linda196]

When I read through your concerns, I had three totally unrelated thoughts.

1/ How long are you waiting between the dose adjustment and reassessment? Many doctors feel a recheck in 6 weeks will tell them what they need to know about how the thyroid is utilising the new dose (or new medication) but there is a school of thought that suggests at least 3 months to allow all of the domino effects of dose regulation to fall into place.

2/ Has there been any investigation of secondary causes of thyroid disruption, like pituitary or hypothalamus problems. Since the thyroid gland is regulated by the pituitary gland and the hypothalamus, thyroid disorders may result not only from defects in the thyroid itself but also from the disruption of the control system in these other organs. These conditions cause Secondary hypothyroidism.

3/ There are also a number of foods, additives and supplements that can effect thyroid function, possibly the least acknowledged being Vitamin D (which is a hormone). Now that people are becoming more aware of Vit D deficiency, and supplementing more and with higher doses, there could be rebound effects on thyroid function which may be overlooked.

Please keep us informed; your experience may add a whole different possible treatment option!

[Scottietottie]

Hi 

My thyroid also refuses to be regulated. It was pretty stable for about 10 years but then went off on its own somewhere!

I take 100mcg levothyroxine every day. Then some weeks I take 25mcg additional on alternate days. Sometimes it's 3 days a week. Latest 'order' was to take 25mcg additional 5 days a week.

I know I am meant to follow orders - and I am not recommending that anyone else follows my course of action - in fact really probably don't - but if I feel my heart racing a bit - I cut the dose the following week. I have been doing this since last summer - adjusting depending on pulse rate - and the last blood test I had was OK.

It's a mystery as to why it won't stabilise though. Please do post what your doctor suggests.

Take care - Scottie 

[Sooki]

For a long time, my TSH varied from .02 to 4 in various visits.  Two things seemed to help (or at least coincided with a more stable TSH!): 

I switched from generic levothyroxine to Levoxyl (and now to Synthroid). Apparently, pharmacists switch sources of generic levothyroxine and each kind can have different carriers? or something like that.  The brand names stay the same, so you can adjust the dose to however you absorb from that source.

Also, I kept all my supplements the same.  Vitamin D may be one.  But I was also varying DHEA sometimes and now I keep it rock steady.  And watch other supplements that may have hormone effects of any kind.

During the time it was varying, I had it tested every 6 weeks or so but kept my dose steady.  I couldn't even directly correlate it to how I was feeling.  It went up and down.  Two endocrinologists both said, the answer was to not get it tested so often :/  They also said it varies throughout the day.  So I guess the standard practice is to take one number every 6 months and precisely maneuver the dose to fit that number which may not represent anything meaningful. 

But those two things did correlated with a less damaging variation in how I felt.  I hope you get some relief soon.

[Deb 27]

Well, at least I am not alone with a fluctuating thyroid.

Linda, I get tested about 6-8 weeks and they never checked me for pituitary or hypothalamus problems. I take Vitamin D once a week. Can that affect the tests and my thyroid? I was deficient in Vit. D.

One positive thing, my dose has decreased in the last year for some reason. I am guessing the gluten free dairy free thing is working a little bit to my favor.

The weight gain has been really bad though and I can't seem to stop it.  I had a doctor  who put me on straight t3 (cytomel)  50 mcg. a few years ago and   I started slowly losing weight. I started having tremors so I had to stop taking it. What was strange was that my thyroid was actually low.   It's so crazy!!! These conditions are a full time job.

[irish]

I forgot to mention in my earlier post that I really do think that the Hashimotos is what makes our TSH go up and down. I had a period of about a year a few years ago where my TSH was all over. It was found to be 8 something and my med was increased and then the roller coaster began. I ended up having blood work every 2 months and TSH was up and down. After about a year it finally settled down and stayed pretty stable for at least 10 years.

I was told at immunology clinic that we can have hypothyroidism and not have the Hashimotos for years. Actually, the Hashimotos doesn't usually come along with the hypo, but it eventually does show up. The interesting thing is one can have the Hashimotos before the hypothyroid even starts. Just takes a lot of time having the blood work and getting the script changed. Years ago I had about 4 different strengths of medication on hand because I had to change doses so much. Irish