This is my first post here. I have been having all sorts of trouble with my thyroid. (Hypo)
My latest labs are
TSH 2.64 Range 0.35 - 5.5
Free T4 1.0 Range 0.9 - 1.8
Free T3 2.4 Range 2.4 - 4.2
My thoughts are that I need more T4 (I've been on .50 mcg Levoxyl) and maybe even T3. I am wondering what your thoughts are.
When I get to this stage (and its happened twice) I end up quitting the Levoxyl because my doctors have said that my thyroid is "normal" and that i do not need more meds. I find this happens when I've been on the Levoxyl for about 6 - 8 weeks. I get bad internal shakes, dizzy, heart palps, and just not myself. This last time I ended up in ER because i thought something was seriously wrong with me. I had an EKG, ECG, tons of blood work and everything came back "normal". I have quit the Levoxyl again because its easier for me to deal with the hypo symptoms instead of the shakes, dizziness, and heart palpitations. Both of the doctors I have gone to just want to put me on an antidepressant and I know I'm not depressed! It's my thyroid.
Does anyone know of a good doctor in the Rochester, NY area (I would even travel to Syracuse or Buffalo if needed)? I would probably travel even farther just to get this done.
I've have looked into going to Dr. Mary Wise and she is horribly expensive and doesn't take insurance. I haven't seen much of anything on the Top Thyroid Docs link either.
Thanks and I appreciate you taking the time to read my post and offer any advice you have!
Re: Looking for advice & Doctor in Rochester NY area
Welcome to the board although I'm sorry for the reason you're here.
Please note, although your levels might be normal aka within ranges, in thyroidland that's not sufficient in order to feel good. Most people feel best with their free levels (FT4 and FT3) at least midrange or between 60_80% of the ranges in order to feel good and symptoms to resolve. If you look at your levels, both are near bottom, no wonder you're feeling bad.
TSH is the thyroid stimulating hormone produced by the pituitary gland and not an actual thyroid hormone. FT4 and FT3 are the actual thyroid hormones and much more important for dosing.
Even if you have a doctor who doses based on TSH only, he's not doing a good job at that either, since 2.6 might be within range but too high for a person treated for hypoT. (keeping in mind that people with a healthy thyroid have a TSH around 1-1.5).
So you'd want to discuss a dosage increase of T4 (thyroxine) with your doctor. as far as T3 goes, I would not worry too much about it at this point. I'd first see whether FT3 goes up when FT4 does (at this point both are near bottom so it's hard to tell whether there might be a conversion issue).
Please do know hypo and hypersymptoms can overlap.
hang in there and hope you find a good doctor soon and receive the care you need
Re: Looking for advice & Doctor in Rochester NY area
Thank you so much for your reply. I will discuss a T4 med increase with my current doctor - if I cannot find another one to go to. My current doctors answer to my lab results and my issues are presently to reduce my T4 meds and take antidepressants so I hope I won't have too much of a problem convincing him otherwise.
Here in upstate NY it is so hard to find a decent doctor who knows how to treat the thyroid. I guess that why we have to be proactive in our own treatment. I'm learning - I have ordered Stop the Thyroid Madness book too so I can really arm myself with more knowledge.
I also forgot to mention that I also have Hashimoto's.
Thanks again - it really helps to talk to others and get advice!
Re: Looking for advice & Doctor in Rochester NY area
I do hope you wont have too much troubles convincing him! you can always argue that although your levels are within normal ranges, maybe they aren't YOUR normal and since there is still plenty of room within the ranges to let you try an increase. I do hope your doctor is willing to work with you! Even if you would change doctor that way you're already working on feeling better!
As you can notice on the board, a lot of doctors aren't exactly thyroid savy.
no person would feel good with those levels. hugs hope you feel better soon and please keep us informed. ^
Re: Looking for advice & Doctor in Rochester NY area
Hi!
I have found another doctor but cannot get into see her until September. I'm excited as she sounds like she'll be a really good doctor - I've talked to a couple of her current patients. She will test for all the things my current doctor won't - iron, B12, cortisol, etc....
My current doctor has agreed to up my Levoxyl. I'm currently taking 50mcg and he wants me to increase it to 75mcg. Doesn't that seem like a big increase? That is 50% more than what I'm currently taking. I just don't want to swing the other way and end up hyper.
I usually take baby steps during increases but I'm not sure how to baby step this one. He wants me to cut my pills in half and take one and a half pills a day. It will be almost impossible to cut these pills in 4's so I can start off slow. Do you think it would be okay to take 1 pill one day and 1.5 pills the next day? I could do that for a couple weeks to slowly increase my dose. Of course my doctor didn't like that idea - he said either you want an increase or your don't. Jerk!
Re: Looking for advice & Doctor in Rochester NY area
Hi there,
glad you found another doctor and that at this point your doctor agrees with an increase.
I would not worry about 75 mcg causing you to hyper really. Both your Free levels are near bottom so there sure is still plenty of room before hyper would come in the picture. Although it might appear a lot, 75 mcg is not all that much, most need more.
You can up like that, will bring your levels up quicker. Yet if you prefer to do it in steps, you might start out as you describe, f.e. a week or so, adjusting symptoms start, let them flare out and up again. I do think you'll be fine with 75 mcg though.
Re: Looking for advice & Doctor in Rochester NY area
Hi Vicki- I live in Rochester. I do go to Dr Wise. I hear you on the price. It's inexcusable. Just because she doesn't accept insurance doesn't mean she should charge $10/ minute. At my last appointment, I was scheduled for a 9:15 appointment and didn't get to see her until 11, with no apologies from the staff for the delay (I think it's business as usual).
Though she is very knowledgeable and will probably have a good explanation for your reaction to levoxyl (I suspect abnormal cortisol levels may come into play), I think it would be worth exhausting other options first. Other doctors I have heard about are Dr Bingham (endocrinologist) and a physician's assistant named Ila Hughes. I haven't done any research about her yet. Can you let me know which doctor you're excited about?
I've decided to switch to a new PCP who will let me continue using desiccated thyroid. I haven't met with him yet, appointment is on Monday but I will send you his name if it works out.
Re: Looking for advice & Doctor in Rochester NY area
I am acutally going to see Dr. Wise. I have called multiple doctors offices and asked about their treatment for thyroid. I haven't found one yet that doesn't treat by tsh Free T4 only. It's been frustrating. I guess I've decided that its time to go to where I know I'll be throughly checked out. I will pay the price and should get some answers. Maybe after that I'll start looking into other doctors again.
I would very much appreciate if you like your new doc if you would share that info!
Re: Looking for advice & Doctor in Rochester NY area
Hi Vicki and Bee01,
I have been following this thread with great interest and just getting around to responding. I too live in NY, 2 hrs east of Syracuse, hour south of Watertown, and have traveled to Rochester to see Dr. Mary Claire Wise, 6hr. roundtrip. I received treatment from her from 2004-2005, when I could no longer afford to continue, my NP agreed to keep me on armour and take over my care.
My story is long, limited time now (grandbabies are with me today Will hopefully get back on this evening.
I'm would really like to know how you both make out with the doctors that you end up choosing, and hope that we can keep in touch. Possibly thru PM/ or phone if either of you are interested.
Happy to meet you both, looking forward to continued communications!!!
Re: Looking for advice & Doctor in Rochester NY area
Hi Deb! Looking forward to hearing more from you. Can't wait to hear about your experience. I think I will continue to see Dr Wise once or twice a year, if she doesn't mind working in conjunction with my PCP. She offers an alternative perspective on thyroid disease and seems to have a good understanding of the subtleties of other hormones involved.
Re: Looking for advice & Doctor in Rochester NY area
Hi Deb!
I'd love to hear your story. You live in snowmobile country! We use to travel to Pulaski and stay overnight to snowmobile. I felt bad for everyone this year seeing that we didn't have much snow at all. Although I must admit I was okay with it! LOL We no longer ride - it just got to hard on my hands and back.
My Mother is hypothyroid and my sister is hyperthyroid. I have known for awhile that I had a good chance at having thyroid issues. From what I've been reading I think I am just being undertreated with Levoxyl and hopefully this last increase will help. Just to be sure I really like the idea of what Dr. Wise is about. I agree she is terribly expensive but I cannot stand feeling like I do.
Re: Looking for advice & Doctor in Rochester NY area
Vicki- a very kind healthboard member (thank you, Librarygirl), did some research for me at the local compounding pharmacy and was told about a physician's assistant named Ila Hughes who treats thyroid. I don't know much about her but she is with an obgyn group out of Brockport, I think. Maybe worth looking into??
The Following User Says Thank You to bee01 For This Useful Post: MarionNY (06-22-2012)
Re: Looking for advice & Doctor in Rochester NY area
Thank you and Thanks to Librarygirl too! I just might look into her.
I actually plan today to call Wegmans and a couple other pharmacies to see if they can tell me what local doctors prescribe Armour Thyroid. It seems to me that the doctors that will prescribe Armour are more in tune with thyroid issues. I don't think at this point I need Armour (or maybe I do) but I'd like a doctor that is more open to using it if needed.
Does Armour have to be from a compounding pharmacy? I use to use one in Canadaguia (not sure I spelled that right) for my pet rats and I know they do compounding for humans - I think I'll give them a call too!
Thanks so much for your help. It's really nice to chat with others who share the similar issues.
Re: Looking for advice & Doctor in Rochester NY area
Hi Vicki- you can get Armour from any pharmacy but only a compounding pharmacy will issue slow release T3 pills (not sure why these are not available commercially?? sounds like a great idea). I spoke with a very kind man at Twelve Corners Apothecary. I think the small places are more likely to give you that kind of information. I asked someone at Wegmans Pharmacy once and they looked at me as though I was speaking a foreign language. I think they would be less familiar with individual doctors than a small, privately owned pharmacy/ apothecary.
Re: Looking for advice & Doctor in Rochester NY area
Thank You! I called Wegmans and Rite Aid and they both told me the same thing. "Any doctor can prescribe Armour" I knew that and asked if they had a list or way to look up the doctors that did because not all doctors will even though they can. They said no. I was a little frustrated but understand. Thanks!
Re: Looking for advice & Doctor in Rochester NY area
While I think a compounding pharmacy is a great resource for contact info, something I read in "The Complete Idiot's Guide to Thyroid Disease" gave me pause about considering a compounded thyroid med - especially one containing T3.
The doctor-author reminded me that thyroid hormone is dispensed in microgram quantities - that's a very, very small amount.
Since compounded meds are prepared by an individual, the chance for error is greater than that of a large manufacturer with an established quality control system.
The doctor-author is aware of a woman who died as a result of a microgram vs. milligram error with her T3 preparation.
If someone is looking for a time-release formula, desiccated thyroid might be a better option since desiccated thyroid has natural time-release properties due to the thyroglobulin in it.
Re: Looking for advice & Doctor in Rochester NY area
Quote:
Originally Posted by bee01
Hi Sammy- I was thinking of that same story. It's the reason I won't use compounded T3 and why it would be so nice if it was commercially available.
While I have no problems taking my T3 in two divided doses, I am aware of many people that suffer with hyper symptoms a couple of hours after their dose.
A slow-release formula should help in situations such as this but, I'm with you that it should only be taken if it is a commercial vs. compounded preparation.
Looking for advice & Doctor in Rochester NY area 
Will hopefully get back on this evening.
