[amosmcd]

#1059710

Hello, everyone! I’ve returned from my self-imposed exile and am feeling tons better, anxiety-wise. It was a much needed break from being overwhelmed by the Graves diagnosis, treatment, and immersion in learning about it all here on the forum. I really appreciate everyone helping me to learn more about GD and what to expect. I feel so lucky to have found this group.

I saw my endo today (new endo appt isn’t for another month, which is fine.) Big surprise, I am once again hypo. This has been the pattern of treatment with him. Hyper to hypo to hyper to hypo. At least this time he is not having me stop the PTU altogether, but reducing the dose from 100mg/day to 50mg/day. I react quickly to dose changes, so should be close to euthyroid when I see the new endo. I knew I was probably hypo because it was harder for me to get up in the morning, and I’ve been craving carbs. Other than that, not much else in hypo symptoms.

Here are my last 3 months’s labs:

2/12/13
TSH: 4.6 (0.270-4.20)
FT4: 2.2 (2.0-4.4)
FT3: 0.49 (0.93-1.70)

1/12/13
TSH: 1.4
FT4: 2.4
FT3: 0.69

12/7/12
TSH: 0.054
FT4: 4.5
FT3: 1.22

I asked him specifically whether which lab result he used for dosing my meds, and although he said he used them all, he said the TSH was pretty representative of how things are going for me. I was not expecting that answer so naturally, with my brain fog, did not have the presence of mind to ask what the heck that meant.

I asked him about trying for a remission with the PTU, and he said it was hard to titrate PTU to achieve remission, and my last TSI was in the upper 300’s so I wasn’t close to remission. I said, well doesn’t it take at least a year on ATD’s before you can expect remission and he said, well yes. He also said that since my TPO is elevated (130?–sorry can’t remember, but it’s not really high) he said I have Hashimoto’s (even though I pointed out that the majority of Graves’ pt’s have TPO antibodies) and said that’s why I swing from hypo to hyper. I do not believe that. I swing from hypo to hyper because he is not adjusting my ATD properly! I asked if I could have my labs tested every 3 weeks instead of 4 since I respond quickly to dose changes, and he said he thought having me go a month instead of his usual 6-8 weeks was enough. I don’t think so.

I wasn’t going to get into an argument with him since I’m getting a second opinion. He knows I’m getting one, and says he’s looking forward to hearing what the other doc says. (The new one is not in his practice or building.) But I felt that he was going to do what he wanted to do, and didn’t want input from me about my treatment this time. It’s so annoying.

But anyway, I’m doing well for now. Really not wanting to ever feel that horrible anxiety I felt in January. I think it was related to a combination of stress, being a little hyper, and FSH hormone stuff being out of whack. I’ve been exercising more, getting ready to walk in Seattle’s 4 miles St. Paddy’s Day Dash next month.

Thanks for listening. I’m really looking forward to letting you all know how the visit with the new endo goes next month!

Take care,
Amy

[vanillasky]

#1176951

Hi Amy, glad to hear you are feeling better, but what you have written makes me think of myself re: Hashimotos.

I have been swinging from hyper to hypo for 15 years. And for 15 years, I was told “Hashimotos/Hashitoxicosis.” It turned out to be baloney because the idiot endo I was seeing NEVER checked the TSI. My TPO is also elevated but in no way comparison to the TSI.

I think it’s probably considered (not sure if it is) for us Graves’ patients to have an elevated slight TPO. Don’t remember my numbers but they weren’t all that alarming. However, my TSI? that’s another story! 800!!!!!!!!!!!!!

So it’s Graves’. Having the hyper symptoms and undetectable TSH for about 3 months at a time, Weight loss, (I was down to 89 pounds and am 5’4″) and tremors, sweating, intensive hot feeling like I had a fever, but would take my temperature and it was 97.1! So then the thyroid, I suppose would dump all it’s hormone into the blood stream. After that, I’d get a TSH of about 14.0 and then he’d put me on Synthroid. I’d take that awhile, then go hyper again! It’s enough to just throw in the towel. I felt lousy ALL the time.

The weight would return, tired, very tired, dry skin, constipation, hair loss, you name it. At one point, I thought I was going bald!

So that’s what happened to me. Personally, I think if you have Hashimotos(and I know people who do) they stay hyp0. They take the Synthroid, but when it goes both ways up and down, it’s Graves’ if the antibodies are present and elevated.

Just my two centavos.

Hope you keep feeling better!

Karen

[Kimberly]

#1176952

@Amy – Welcome back…so glad to hear that you are feeling better!

I suspect that what your doc was pointing out about your TSH is that it *is* moving in the direction it’s supposed to (moving upward as T3/T4 are falling). In many patients who are early in the treatment process, TSH remains suppressed and won’t budge, even as T3/T4 are dropping into hypo territory.

It is possible to have both Graves’ and Hashi’s, although based on the medial research, it seems to be more common for Graves’ to progress over time into Hashi’s, rather than a constant switching back and forth. (And as you noted, many Graves’ patients do have positive TPO antibodies). Here are a couple of articles:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://endo.endojournals.org/content/148/12/5724.full

http://www.ncbi.nlm.nih.gov/pubmed/20305330

Take care – and definitely let us know how things go with the new endo! In the meantime, if you feel your symptoms shifting again, don’t be afraid to be the “sqeaky wheel” and demand new labs. YOU know your body, and you know when things aren’t right!

[amosmcd]

#1176953

Hi, Karen and Kimberly-

I started out being diagnosed with Hashimoto’s 5 or 6 years ago by a primary care doc. My labs were always in the normal range, but I had felt horrible for decades, so when I saw this endo about it, he agreed to trial me on levothyoxine. I felt great for about a year and 1/2, and then last April I started going hyper. Even after I was taken off the levo, I continued to be hyper and in Sept I was diagnosed with Graves. I didn’t have any hyper symptoms before April.

All this back and forth business started when I was first treated with MMI. The endo kept me on too high a dose even after I was trending to hypo and then he took me off it for 3 weeks and wham, I went hyper during that time. Now same thing with the PTU (which I started because I couldn’t tolerate the MMI.) My previous set of labs in January showed I was trending to hypo, but he didn’t lower the dose enough and now I’m hypo again. I could have been more proactive about lowering the PTU dose back in January, but I was feeling so bad I couldn’t deal with it. He wants to place the blame on the Hashi vs Graves, but until he can figure out (and work with me) on a proper dose of PTU and more frequent lab checks, I don’t think he can say it’s that.

At least this time he didn’t take me completely off the PTU, so I guess he did learn something from the MMI thing, but I don’t like being his guinea pig while he learns what I already know about how the ATD’s work on me.

Kimberly, thanks for the links to the articles. Most of it was Greek to me, unfortunately. The 2nd link from the NHI doesn’t let you read the full article, just the abstract. It would have been nice to read about their case studies.

Also, I truly have no idea what the endo meant by that comment. It was very vague. He was replying in the context of being asked which lab results he used for titrating the PTU dose, so his answer seems to indicate he leans more on the TSH than the others, but who knows? I thought I read somewhere that the TSH shows what you have been going through over time (sort of like the hA1C for blood sugars with diabetics.) Since his answer bothers me, I’m going to contact him via the clinic’s MyChart and ask him. I’ll let you know what I find out.

Thank you both for your replies!

Amy

[vanillasky]

#1176954

For what it’s worth, at Cleveland Clinic where my 2 doctors are, they seem to think that the TSH is inconclusive.

They feel that the FT4 is much more important than TSH. Why, I don’t know. They told me to pay more attention to that because that’s what is in the blood stream. Not sure why they are still using TSH. The ranges are different in every lab I go to. Very confusing.

[catstuart7]

#1176955

Hi Amy, welcome back! I’m glad you are feeling better – sounds like you are in take no prisoners mode. Sometimes we have to be to advocate for ourselves. I’ve found ATD reduction to be a tricky and treacherous business. During the first six months after my diagnosis every time the endo tried to reduce my dose by 25% even though it was completely indicated by my FT4, I had a big rebound reaction of hyper symptoms. Now though the rebound is smaller and shorter-lived. I suspect that the antibodies are involved in this somehow. Anyway, I hope you get one of these docs to go with you in the right direction.

[snelsen]

#1176956

Hi Amy, welcome back. I am glad you found a new endo. Hope the experience is good.
I am always available in Seattle if you want any referrals (and non-referrals) based on my experiences.
Shirley

[amosmcd]

#1176957

So I contacted my endo about the question I had below:

I asked him specifically which lab result he used for dosing my meds, and although he said he used them all, he said the TSH was pretty representative of how things are going for me. I was not expecting that answer so naturally, with my brain fog, did not have the presence of mind to ask what the heck that meant.

This was his response:

The TSH is the most sensitive indicator of current thyroid status. It has the disadvantage of potentially lagging behind the other values in time especially with rapid changes in thyroid hormone level. When your TSH is high that means the thyroid hormone levels are low. I worry about over suppressing the thyroid with PTU and therefore lowered the dose.

So to me it sounds like he has been adjusting my PTU based on my TSH. Or am I reading this wrong? Wish my brain could comprehend the most basic information. I feel like half my brain cells have died off.

I started having palpitations again starting the day before yesterday, with them really being noticeable last night. I think switching from the three times a day schedule to twice a day I’m now on is responsible. Really hard to divide up a 50mg pill into 3 doses without destroying it. Don’t want to have to take the PTU 4 times a day, since that would be hard to manage. I really dislike the palpitations, though. My heart rate is normal at least.

Amy

[catstuart7]

#1176958

Yep sounds like he puts the TSH first, which is what most endocrinologists do. There is recent research (in the last decade) which shows evidence for TSH receptors in the pituitary itself. This means that the Graves’ antibodies are not only sending a false overstimulating signal to the thyroid but also a misleading signal to the pituitary about how much thyroid hormone is in the blood. This can cause the pituitary to then send out less TSH than it otherwise would leading it to be falsely lowered. All the while your actual hormone levels, measured as FT4/FT3, can get too low and cause you hypo symptoms. Here’s a link to one relevant study Long-term TSH suppression . Especially check out the comments section at the end.

This pov is completely rejected by many endocrinolgists who were trained before the new research came out. That includes my own endocrinologist right now – fortunately for me my TSH is no longer suppressed so we are able to agree on dosing decisions.

If you want to see an example of long-term TSH suppression not in sync with thyroid hormone levels take a look at Harpy’s thread where she lists her partner’s lab values over a course of years.

[catstuart7]

#1176959

Just wanted to add – my post above is about the general issue of using TSH for Graves, Amy since your TSH is already way up at 4.6 the false suppression issue doesn’t apply to you. I hope your doc is lowering your PTU!

[vanillasky]

#1176960

Wow! I am reading this and am over-whelmed by the opinions of different doctors!

I had the Chief of Endocrinology tell me the TSH is inconclusive! LOL~ As I wrote before, he told me always to watch FT4 and it’s conversion to FT3 and that’s really where my thyroid is at. He said TSH can wax and wane, not accurate!

But I guess all these doctors have different versions. Oh well………. Maybe this is why some of us always feel like crap?

[Kimberly]

#1176961

As catstuart7 noted, the issue with relying on TSH is when it is remains suppressed and fails to respond to the normal feedback loop, even though T3/T4 are normal.

Docs who are not aware of the latest medical guidelines can sometimes sending patients hypO by *not* lowering the dose of anti-thyroid drugs when T3/T4 are clearly hypo, just because TSH is still suppressed.

Once the TSH does start to increase in response to low T3/T4, then it provides more useful information.

[Khadijah]

#1176962

Interesting, I tend to go by how I feel and labs. For example, I swear I do best a little on the hyper side of the normal range. Today I didn’t know my
lab results going in but I knew I had to be a little hypo and I was feeling crappier since my previous labs. Sure enough, I am hypo per the lab results. I don’t know if the doctor changed my dosage from 20mg to 10mg methmizole because of the results or just my complaints. I probably would insist on him giving me a lower dosage if he did nothing but then again he’s pretty good at setting me straight when I go blaming everything on methmizole. I will ask him next time what he looks at to determine the dx.

I expect I will get a little hyper again in a month or so. I use to have a pill cutter I wonder if I still have it somewhere?

So, I guess that makes me the newest member of the “GDATF swingers club!”

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