[BarbaraLK]

#1060560

I am new to the forum. I have had Graves for a little over a year and taking tapazole. I go to the endo every month and he takes blood and adjusts my meds. I have asked him about serious sweating (like hot flashes), itching and sores below my knee, serious weakness in my legs (can’t get up and have fallen a few times), not sleeping at night, and some other things that everything I have read says are symptoms of hyperthyroid. He tells me not to worry about it or it is not related. (He also told me that I won’t gain weight if they give me radiation to blow out my thyroid – “it’s a myth” – even though I have read systematic reviews that say you do gain weight. If the endo just treats my blood levels, what do I do about these symptoms that are seriously affecting my quality of life? Changing doctors is not an option because the reviews of the other endo’s in my area all say “S/he doesn’t listen to me or explain anything” – just like my current endo who treats thyroid not people. Any suggestions are welcome. Thanks

[Kimberly]

#1183335

Hello and welcome!

Are you getting hard copies of your labs, so that you can see for yourself where your levels are? Sometimes, the “normal” range is fairly wide, and patients might be symptomatic if they are pushing the upper or lower end of “normal”.

Ideally, *yes*, the doctor should be listening to your symptoms. However, it gets tricky for them if your levels are bumping against the upper or lower limit of “normal”.

One thing to make sure of is that your doc is looking at Free T4 and T3 and NOT just TSH in making dosing decisions. TSH can remain suppressed for quite some time in Graves’ patients and is not a good benchmark for making dosing decisions.

I do think that online review sites are helpful in general, but keep in mind that most of the people who post are likely really happy *or* really unhappy. Also, people can have vastly different experiences with the exact same doctor. If you don’t want to switch to another endo, any chance that your primary care doc might be willing to monitor your dosing on the Tapazole?

Take care – and please keep us posted!

[beauty2010]

#1183336

My endocrinologist is always more equable when my symptoms fit in with the blood tests and seems to take it as a personal affront when they don’t
Bless

[Robboford]

#1183337

Hi BarbaraLK,
Your symptoms sound very similar to mine when I was first diagnosed and hospitalised with Graves’. In my case though, I was suffering from heart failure. I couldn’t tie my own shoe laces, had major difficulties dressing and when I fell over I just couldn’t pick myself up off the floor. for me though I also experienced swelling from fluid retention (I had put on 12kgs approx. 25lbs, which was all fluid). I am not a Doctor and not saying that you could be suffering from the same problem but has your Endo and or GP been monitoring your heart rate and blood pressure, it may be worth discussing with your GP at least. the best advice I can give you is to read and learn about this Disease from reputable sources. Search this Forum for stories about fellow sufferers and arm yourself with being better informed, there are also lots of articles and links to resources through this website. The best thing I have found is to be my own best advocate. Speak out, discuss your issues and concerns with your Doctors, don’t be put off, each of us are the ones suffering and travelling on this journey and deserve to get the answers and information we need. Stay strong and keep fighting to achieve wellness, it is a long journey and full of ups, downs and speed humps along the way, and this Forum and it’s wonderful contributors is AWESOME and has helped me and reassured so many times, that I would never have found the strength to tell myself to “Suck it up Buttercup” to get through each day or found the answers or help to the numerous questions I had.
Cheers
Deb
(A.K.A. Robboford)

[barbra]

#1183338

Hi BarbaraLK,

I am also a Graves patient but I already had RAI and my levels are now in the normal range.

The reason I’m writing this is that about three months ago I developed a nasty rash on my left leg just below the knee. The sores seemed to go really deep into the skin and the itching was horrible. My endo said it’s an allergic reaction but not from the medicine and told me to use Hydrocortizone 0.1%, which helped somewhat with the itching but did nothing to curb or heal the rash. My PCP said it’s probably from the dry heat in my house, happens frequently in the winter time, and prescribed Triamcinolone 0.1% ointment. Now, I think they may both be wrong as to the cause of the rash, but that ointment is a Godsend. Using it twice a day the itching stopped right away and the rash was gone within two weeks, but did leave some scars. Maybe you can ask your doctor about the ointment, it may help you as well.

As an aside: I did gain weight after the RAI when I went hypo, but my love for food and quitting smoking may have contributed to that.

I wish you well with whatever treatment you may choose. I know it’s hard to believe but there is light at the end of this long dark tunnel, something I would not have believed a year ago.

Hugs.
Barbra.

[Author]

Posts