[Naisly]

#1059467

I could really use some advise and I know at least the admins here can’t give it. But I don’t know where else to turn.

Some of you know I am unable to get a new GP and can not see my endo until Feb. And no, he doesn’t take calls, he told me my GP can handle the dosing atd’s, which I’m trying to go into remission. But my GP knows nothing about dosing.

Anyways, I think I’ve ran into some trouble and I’m not sure what to do about it. I started Sept.12th with 30mg of Methethimazole then Oct.10th 15mg. This is dosing orders from my endo, which he gave me back in Aug. I don’t understand why my TSH shot up so high in 3weeks and frees so low. I didn’t even think that was possible that fast. Could it be because my TPO was so high? Or is there something else I’m missing?

Here are my labs:

Oct 25 2012
TSH 73.8 (0.38-5.5)
T4 Free <5.0 (10.5-20.0)
T3 Free <1.69 (3.5-6.5)

October 3rd 2012
TSH 0.09 (0.38-5.5)
T4 Free 7.6 (10.5-20.0)
T3 Free 2.4 (3.5-6.5)

August 24 2012
TSH 0.06 (0.38-5.5)
T4 Free 58.2 (10.5-20.0)
T3 Free 21.7 (3.5-6.5)
TPO 2670 (<35)
TSI 10.6 (<1.

~Naisly

[Bobbi]

#1174852

If I had to guess at the reason for the aberrant lab results, I would suspect a technical “goof,” unless you are seriously symptomatic of hypo which you do not mention. Your blood results could theoretically have been confused with someone else’s in the lab.

Regardless, your endo should receive these results and someone in his office should be able to discuss them with you, no? If not, send a copy in a letter to the endo asking directly.

[cmac]

#1174853

Hi Naisly, I am seeing my Endo for the 1st time Monday (if Hurricane Sandy doesn’t intervene). My MD has had me on 15mg of methimazole for 2 months. I just got my second set of labs and my TSH was worse than the first time down to .005 from .01. However, the methimazole is doing its work, even if it’s not showing up in the labs. The f4 is OK. I feel completely better, and my symptoms of excessive thirst, weakness and weight loss, have reversed. If I didn’t have a Graves diagnosis, there is no reason I would be seeking medical treatment at this time. I point this out to emphasize that well being is more important than what the labs show. Good luck.

[Naisly]

#1174854

Thanks for the replies.

Well I’ll try to give a quick run down on what has been happening.

When I saw my endo Aug.24th (first and only time) he told me what my dose will be 30mg first 4 weeks, then start 15mg there after, and depending on labs at 6 weeks, have my GP adjust my dose. I tried to tell him my GP doesn’t know anything about dosing, and the only reason I had the referral to see him (the endo) was because my GP agreed he didn’t know enough, so then what, my endo said of course my GP knows. I asked him if I could call his office or what I should do ‘if’ my GP doesn’t know, he only laughed and said your GP knows and I don’t want to see you for 6 months. He also made me promise I would not change the dosing on my own, I reluctantly agreed.

So, Sept.12th I started the 30mg. I began to feel better, shakes gone, heart felt stronger, most aches gone etc. But then Sept.23 my heart started to do some funky things – not at all like when I was severely hyper. It was happening every 5-10+ beats per minute, sometimes not stop for 5 minutes straight, all day, everyday. From the second I opened my eyes to the second I fell asleep.

It feels like my heart is off beat and jumps making blood rush to my head, causing me to take a deep breath because I feel it in my chest, almost as if I got the wind knocked out of me for that ‘beat’. And I walk around trying very hard to ignore it, but its hard to when I feel so dizzy. Something just wasn’t right.

Oct.5 I went in to see my GP and told him about the heart thing, he said not to worry, and ‘sit’ when I felt dizzy. He said he would order a 24hr heart monitor if it would make me feel better, I told him that it might be a good idea. I asked him about my labs from Oct.3, he said I was still hyper because my TSH was still low and to continue following the dosing the endo recommended. (Obviously I was hypo at this time just from my lab work). And no, my GP still thinks that you dose according to TSH levels.

So at this point, knowing I was hypo I had no choice to follow what the edno and my GP said. But all the while my heart got worse, I began so swell up all over, I look like I’m 6months pregnant, my stomach is rock hard, my hands are swollen, my skin feels tight, my goiter is bigger and is bothering me, my eyes lids are swollen actually, most days I don’t have upper eye lids. I’m starting to walk around like a zombie again. I suppose the worst is my heart and feeling dizzy all day.

As you can see I had labs done again Oct.25th and this is where I’m at. I will say that finally after 3+ weeks (Oct.29th) I am to go in and get that heart monitor the GP ordered back on Oct.5th.

Just a tad bit more info – Not once since June have I had my blood pressure checked by any of these dr’s. And this is why I had such a hard time starting the medication to begin with, because I couldn’t find a dr willing (knowing) to do proper dosing, and look where I’m at now

I’m just so very alone.

~Naisly

[Bobbi]

#1174855

Gee, Naisly, I am so sorry for what you are going through. And all of this is absolutely NOT normal. I do think you need to nag the endo. AND the GP. Send copies of the lab results to the endo with highlighter and stars and question marks to make sure he sees them.

[Naisly]

#1174856

Thank you again for the reply.

I think Monday I will go to this appointment well armed with all my labs and a wealth of info.

However I do need so Canadian guidelines for treatment with medication. I would rather bring Canadian because from the few dr’s I’ve talked with, they don’t like US medicare since as they put it – Their mandate seems to be based on the financial aspect rather than healthcare, meaning the insurance companies run healthcare – To put it mildly.

For example its very hard for me to bring in US guidelines (I’ve tried) stating not to dose according to TSH levels, rather dose on free T’s.

So if anyone has Canadian literature they would like to share, please do. Perhaps I’ll even try stuff from the UK. If not, I’m afraid I’ll be hypo forever

Thanks again,

~Naisly

[catstuart7]

#1174857

Naisly wrote:

For example its very hard for me to bring in US guidelines (I’ve tried) stating not to dose according to TSH levels, rather dose on free T’s.

So if anyone has Canadian literature they would like to share, please do.

How about this study from Amsterdam? Suppression of Serum TSH

Ooops, just looked at your 10/25 labs – it doesn’t look like you have suppressed TSH anymore, hopefully they won’t argue with you now on reducing dosages. I’ll leave the study up in case it’s useful though. Good luck!

[Naisly]

#1174858

catstuart7 wrote:

How about this study from Amsterdam? Suppression of Serum TSH [jcem.endojournals.org]

Thank you catstuart7. This study I found useful and quoted bits to bring with me. Which to be honest, the internal medical dr I saw yesterday didn’t really need it. He was on-top of all the latest.

I walked out of his office feeling a lot better. He’s also willing to follow my care and wants me to stop the beta-blockers completely (120mg daily) which is likely the cause of my heart issues. He believes I have Hashimoto’s as well as Graves, but it doesn’t matter since either way I need to get my levels stabilized.

Since I am responding so well to atd’s, he wants me to start 10mg of Methethimazole (down from 15mg) immediately for 2weeks, get labs done, then lower and repeat. Best part is I can dose according to my labs (which I get on-line within 12hrs). He just wants to work on the freeT4’s as the rest will follow suite, great news there. Most people need to get labs every 3-4weeks for any significant change to show. So the route we are taking is:

• To get labs stabilized as stated above.
• Once this occurs we will then work with my symptoms, since the atd’s are working faster than healing.
• Since healing takes longer, I will get labs every 4weeks and adjust accordingly.
• At that point dosing should be in small increments of about .5mg – 2.5mg and this is only to bring my levels to where my body feels the best.
• When that is achieved – will be the day I mark on my calendar and aim for remission. And check TSI/TPO with my other labs every 3months or so.
• Once the antibodies are normal (TSI) will be the time to start to ween off of the atd’s and head into remission and this can take any where from 1-2 years, if not longer.

As long as I try and eat right, stay away from processed foods, keep stress at bay, learn to say ‘no’ continue to be an advocate for my health, I believe I can achieve remission.

~Naisly

[snelsen]

#1174859

Hi, so glad you are hooked with a good clinician and a plan! REally glad you are off beta blockers. Bet you will not have your cardiac symptoms anymore. ARe you tapering the beta blocker, or did you just discontinue using it?

A thought for you to explore with your doc. I think that TSI is not a bit helpful, or used, in determining treatment. The TSH, T3 and T4, plus your symptoms, are the guidelines for that. Some people are euthyroid and and have elevated TSI’s for years!

My understanding is that the remission rate is 30%, and researchers are not very sure or clear about how/why that happens when it does happen.

Best wishes, and I am so glad you have a better plan of care in place!
Shirley

[catstuart7]

#1174860

Naisley your plan sounds awesome How did you find this amazing doctor?

[Naisly]

#1174861

Hi Shirley,

Thanks for the reply.

My dr wants to to stop the beta-blockers cold turkey. I did question him about that since I heard/read its best to tapper down, he said I didn’t need to since my levels were so low and went off into a bunch of medical jargon.

You are correct when you say that TSI is not helpful with treatment (but helpful with remission – as explained below) that’s why we are treating this with 2week intervals then watching freeT4’s and as well as making sure freeT3’s and TSH are following suit. Once the freeT4’s are within ranges we will begin with maintenance dosing, watching my labs as well as symptoms.

Some of the readers out there might not know this part and this is where it gets a tad tricky. Euthyroid means normal thyroid function and does not mean Graves disease is in remission (The thyroid gland is the victim, not the cause). For Graves to be in remission, you must not have any (or very very little) TSI (thyroid stimulating immunoglobulin) which causes the production of the thyroid hormone. TSI is the direct cause of hyperthyroidism in Graves’ disease. TSI will continue to be elevated if there are still environmental triggers. This is why some research states its best to stay away from processed foods, cigarette smoke (and why cigarette smoke can increase likely hood for TED), etc and eat healthy. Stress is also included in this as we have read all the research lately about this.

So my suggestion to all the readers out there is get as much info as you can about TSI as I only condensed this last part. Its always best to keep asking questions, talk to your dr’s, and be your own advocate.

So now we know a little bit about TSI which by reading what I just wrote, is why it is important for remission.

Ok, so this is my take on it all. I have read remission can occur any where from 18% – 80% in patients and I have an idea why that is. I don’t think many patients have been given the proper knowledge about the disease and assume they take a pill every day, get to euthyroid (mistakenly thinking this is remission) then stop taking the medication assuming they are in remission, yet found themselves bounced right back to hyper. Nor do most people take into account the environmental triggers and continue to eat the same, smoke the same, keep the same stress levels and expect that little pill to do it’s magic all on it’s own.

After saying all this, this is why I said:

Naisly wrote:

Once the antibodies are normal (TSI) will be the time to start to ween off of the atd’s and head into remission and this can take any where from 1-2 years, if not longer.

So depending on how you live, your ‘environmental triggers’, Shirley is right in saying it can take years for your TSI levels to normalize this is why lifestyle changes are important for your immune system to heal, but if the case was your TSI was still high, many people do fine staying on a small maintenance dose for many many years. I know someone who has been doing so for 30+ years, and look at Kimberly here, she has been on it for 7 years?

So remember, just because your euthyroid, doesn’t mean your ready for remission. You must be both euthyroid as well as no TSI.

Couple facts I’ll throw in – You will always have Graves disease even if you remove your thyroid, by either surgery or RAI. TSI will raise dramatically after RAI and why the chances to get TED is higher, and slightly after surgery. Graves is an autoimmune disease and with any autoimmune disease your chances to have an other one is 2x as likely.

Anyways I’m sorry, I’ve probably confused you all even more, but the best advise I can give you all is to educate yourself!

~Naisly

[snelsen]

#1174862

Great email! You have reflected in what all of us (Graves’ people on a panel) said. EDUCATE YOURSELF! It is complicated, but we really need to have a clue about all of this.
Thank you for your wonderful post. My EYES are so tired, so they need to go to bed now. Thus, a short note tonight. May you never get TED~!
Shirley

[Naisly]

#1174863

catstuart7 wrote:

Naisley your plan sounds awesome How did you find this amazing doctor?

So sorry I missed your post – But there really isn’t an easy answer. All I can say is, when I went into his office I had already planned ‘pretty’ much what I was looking for by educating myself beforehand. I learned a whole lot about TSI/TPO/TSH/Free’s, remission, and dosage. I began to understand how the medication was reacting with my own body and the effects on previous labs.

And to be honest, I went in to see him for only a heart monitor, but I knew my heart issues where directly caused by Graves, so it was obvious to me that this would come up.

And Shirley,

Thank you! I do hope your eyes have improved.

~Naisly

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