Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Hi All,
Well, I figured this day was coming but was hoping to avoid it. I've
been through the ups and downs of Graves along with all of you.
Mostly been overdosed and a TSH reading "forced" and I was hypo
more often then not. In Dec I insisted with the NP that I have been seeing that I needed to raise my FT4 as I was not feeling well -
tired, etc. So we agreed to a 1.25 dose. 6 weeks lab draw on the
1.25 mg my levels were:
TSH .299 range .3-5.0
FT4 1.17 range .71-1.76
FT3 3.3 range 1.8-4.2
NP didn't like the TSH and wanted me to go back up to 2.5 mg of
Methimizole per day - I told her I didn't want the FT4 to fall again so
she said I could take 1.25 one day and 2.5 the next - alternating dosages
per you guys advice I opted to take 1.88 per day. I expected the TSH
to be low or suppressed this next lab draw which I had done yesterday.
TSH was .006 range .3-5.0
The nurse wouldn't give me the FT4 or FT3 number. They were confused as to the dosage I was taking and why - so I tried to explain that rather
then alternate days, I kept an even amount in my system. I doubt she got it. Anyway her parting comment was the NP would be back in touch with a different dosage to bring the TSH up - I tried to explain that I wasn't surprised and expected it because I had been hypo for so long that I haven't had a true TSH reading. Hopefully in the morning I will get the
rest of the results but totally expect her to want to increase the dose to
5 or even 10 mg of MMI. I figure I'll wait and see what the FT's actually are. Truthfully, I expect them to be lower as I've been low on energy again
and really felt the best on the 1.25 mg a day. Keep your fingers crossed
I'll have actual numbers - I expect NP to call and there will be an argument but I am actually hoping I can keep my mouth shut and just
let her tell me whatever - I need a refill of my perscription and then
go in search of a new Dr.
Exactly how do you look for a Dr that knows anything about Graves?
Believe it or not my OB/GYN is very knowledgable about it and I've
asked her to consider helping me but I don't think I'm going to win that
argument......:)))
Anyone else I've talked to has talked TSH - I live in a small rural
community and feel totally lost. I've tried the list of preferred doctors but
there aren't any close by. and most are naturopaths that don't accept insurance.
Sorry to be so lengthy, just appreciate you listening and any advice
is appreciated.
Have a good day.
Cindee
Well, I figured this day was coming but was hoping to avoid it. I've
been through the ups and downs of Graves along with all of you.
Mostly been overdosed and a TSH reading "forced" and I was hypo
more often then not. In Dec I insisted with the NP that I have been seeing that I needed to raise my FT4 as I was not feeling well -
tired, etc. So we agreed to a 1.25 dose. 6 weeks lab draw on the
1.25 mg my levels were:
TSH .299 range .3-5.0
FT4 1.17 range .71-1.76
FT3 3.3 range 1.8-4.2
NP didn't like the TSH and wanted me to go back up to 2.5 mg of
Methimizole per day - I told her I didn't want the FT4 to fall again so
she said I could take 1.25 one day and 2.5 the next - alternating dosages
per you guys advice I opted to take 1.88 per day. I expected the TSH
to be low or suppressed this next lab draw which I had done yesterday.
TSH was .006 range .3-5.0
The nurse wouldn't give me the FT4 or FT3 number. They were confused as to the dosage I was taking and why - so I tried to explain that rather
then alternate days, I kept an even amount in my system. I doubt she got it. Anyway her parting comment was the NP would be back in touch with a different dosage to bring the TSH up - I tried to explain that I wasn't surprised and expected it because I had been hypo for so long that I haven't had a true TSH reading. Hopefully in the morning I will get the
rest of the results but totally expect her to want to increase the dose to
5 or even 10 mg of MMI. I figure I'll wait and see what the FT's actually are. Truthfully, I expect them to be lower as I've been low on energy again
and really felt the best on the 1.25 mg a day. Keep your fingers crossed
I'll have actual numbers - I expect NP to call and there will be an argument but I am actually hoping I can keep my mouth shut and just
let her tell me whatever - I need a refill of my perscription and then
go in search of a new Dr.
Exactly how do you look for a Dr that knows anything about Graves?
Believe it or not my OB/GYN is very knowledgable about it and I've
asked her to consider helping me but I don't think I'm going to win that
argument......:)))
Anyone else I've talked to has talked TSH - I live in a small rural
community and feel totally lost. I've tried the list of preferred doctors but
there aren't any close by. and most are naturopaths that don't accept insurance.
Sorry to be so lengthy, just appreciate you listening and any advice
is appreciated.
Have a good day.
Cindee
If it were me, I would run away fast from this NP as it is apparent she does not know how to dose properly by the Free Ts and not to the TSH.
I had to show my doctors the book from Elaine Moore "Grave's Disease: A practical guide" on why one does not dose by the TSH and that the Free Ts must be dosed by instead.
My holistic doctor kept the copy of my book for almost 8 years and just returned it back to me last week. :-) He definitely got the idea on what needed to be done for those of us with GD.
{{{hugs}}}
poor body doesn't know whether it's coming or going.
I started on meds in June and in July FT4 was 1.24 with
TSH .0004 20 mg MMI
Aug FT4 was .76 with TSH .051 - 10 MG MMI
Sept FT4 was .82 with TSH 1.88 - 5 MG MMI
Oct FT4 was .94 with TSH .875 2.4 MG MMI
Nov and Dec FT4 can't find my labs right off hand - 2.5 in Nov
and Dec and they had gone down yet again and I started
taking 1.25 after the Dec test
Jan FT4 1.17 AND tsh WAS .299 went to 1.88 mg MMI
Feb all I know is the TSH is at .006
Believe me I'd like to take the book and make them read it first...lol
but some of them I'd like to - well never mind.....I'll leave that to your
imagination.
I feel pretty defeated and don't even know where to start looking.
I so appreciate your support it really helps. I just wonder why we have to battle so hard.
Thanks,
Cindee
If you are sure that yuo have Grave's (in contrary to me) you might want to give it a try.
You also should be able to drop by interpath and show your ID and get your labs. I can.
Other than that ... the TC isn't the place to shop around too much. There is 2 other Endo's and from people (among patients I see) it is not worth it. Also, if you go to Top Thyroid doctors, I think it is going to show Dr Ames. I saw him and although he is very knowledgable about alot of things, he is quite off on hyperthyroid/Grave's area although he also said I had Hashi's. Call me for more info, you have my number.
I heard from multiple providers, including the doc that I work for that if you have something seriously wrong with you, don't stick around here, go to Seattle/ Portland or at least Spokane.
Hope this helps
I hate to tell you this but, you should have never been started on meds....unless you were having symptoms.
Your FT4 back in June/July was very nicely in-range. Yes, your TSH was suppressed and I suspect your doctors were looking at this and calling you hyper.
In actuality, you were subclinically hyperthyroid and this is watched but, not treated.
If you were having symptoms with those labs, a beta-blocker would have been appropriate.
No wonder you've been struggling with being hypo, poor thing.
((hugs))
I apologize.
I read your second post wrong.....I thought the labs you posted applied to when you were first started on meds.
I now realize that you were started on meds in June and the first set of labs you posted represented being on 20mg until July.
So, to correct what I originally posted, yes, you should have been taking meds - you were definitely hyperthyroid when you started.
I'm SO sorry you have continually been overmedicated. I dealt with that a lot during my treatment.
Now, I know you don't need to take thyroid hormone replacement but, there are some thyroid-savvy doctors that Rx certain types of these meds.
You could try calling local pharmacists to get contact info for doctors that Rx Cytomel or Armour.....doctors that prescribe either of these two types of thyroid hormone replacement meds tend to be more thyroid-savvy.
Best of luck to you!
Nathalie - my only concern is if they have the knowledge and insight to take me into remission - that is a concern but guess you never really know huh?
Have a great day and I'll keep you posted.
Cindee
He is known for his abrubtness and some people feel he lacks bedside manners. I had no problems with him, I like no-nonsense attitude. He is also known as the best endo in town. Despite seeming lack of deep knowledge, I do like KB though. She is open to learn and is not too proud to ask for help from the MD. That is a good trait in a provider, I think. Dealing with them is for you maybe easier because you have straightforward Grave's disease. If you can work with her with your numbers to be right for you, it might be what you need. She is caring and patience. Oh, and she calls back very fast and they print out your labs for you!
But yes, I agree, the lack of knowledge is always tricky. But like you said, you might want to find some "rest" there for a while. It might work out.
I find it hard to advice you on the right doc, Cindee. My problems are not solved either and they certainly do not know what's up. But that is partly my fault. I have been sort of paralyzed, action wise lately. I made some huge dietary changes and kind of decided to just let things be, for a while. But since it is clear that you have Grave's and you have the info found from the wise ladies here and are now more educated, I would hope for you that all you need is a "complaint" provider, LOL. Just know that I am not claiming they are awesome, just saying that she is good to work with.
Do you have E Moore's book? You can borrow it, if you like and show it to her. I did show it but I wasn't too pushy to give it to her to read it. It might be good though, LOL.
You got to come to Bikram's Yoga though! You will have not a chance to think about anything else but that yoga for 1.5 hours, which I find very refreshing. It is hard! No thoughts at all about thyroid!