[msled]

#1060066

Hi,

I am in the process of reducing my dose of synthroid from .112 to .1. My endocrinologist started this increase process two years ago and I always end up going hyper (like now!) Has anyone else experienced the dry/burning mouth and if so any suggestions for self help would be appreciated. I have been tested for SS, negative, all three antibody tests negative…I do know that my endocrinologist is trying to supress my TSH which is definitely not working for me. I was high normal 2 years ago and then everything dropped in the matter of three months to low normal. When I brought it to her attention (as a result of muscle pain, which she told me is not a symptom of thyroid!!) I was increased from .1 everyday to .112 everyday then had to add .125 4 days a week to the .112’s and ended up so hyper that my neck looked like a balloon, all in 6 weeks. Now I am reducing as I can not stand the anxiety, bowel problems and now dry mouth and really sore gums.

I keep copies of all my blood work and contacted my GP that I was reducing my dose. I know I have to count back three weeks for what I am feeling today, which is not great.

Suggestions please and thank you!
msled

[snelsen]

#1180071

Gosh, msled,
I am SO SORRY about this! My thought is that you need a second opinion. My experience with all endos, has been that with any dose change, increase or decrease, the MINIMAL,and not optimal or desired at all, time to evaluate you AND the labs, should be about 2 month. And with any dose change, I watch myself carefully, report how I am feeling, if it is worse, and we do not do labs for 3 months.

With the recent attempt to decrease my synthoid dose, we waited SIX months. So it is disturbing and worrying to me ( as “just” another Graves’ patient) that you have had so many changes in such a short period of time.

And your doc should be concerned, and take a really careful history of your symptoms. Seems like you need to be “seen,” with careful attention to how you are feeling. You are not feeling well!

Does the endo pay attention to the T3 and T4? I imagine Kimberly will chime in soon. Generally, docs are paying attention to all the labs, not just TSH

Thinking back, I do remember mild dry mouth when I was hyper. But not sore gums, and it seems that your dry mouth is a game changer. Just to be sure, are you drinking enough fluids??

I am sooo sorry. You sound miserable. I hope you hear from others with their experiences and suggestions.
Shirley

[Raspberry]

#1180072

I’m with Shirley on the second opinion! For the mouth symptoms look for gum made with xylitol – it produces a cooling sensation and helps with dry mouth.

[Kimberly]

#1180073

Hello – I’m not 100% clear on whether your TSH *is* suppressed, or whether your doctor is *trying* to suppress it. In general, a reduction of thyroid hormone replacement should have the effect of *reducing* T3/T4 and *increasing* TSH. For patients who are stable and feeling well, TSH testing alone seems to work fine, but hopefully, you are getting also T3/T4 tested right now.

As for the dry mouth, maybe go back to your GP for some guidance on this? You definitely want to get a correct diagnosis and treatment. Until you can get some better direction, these tips from the Sjogren’s Syndrome Foundation might be of assistance.

(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://www.sjogrens.org/home/about-sjogrens-syndrome/survival-tips

Hope you can get some relief soon!

[msled]

#1180074

Thanks everyone for the advice. I have already looked at the SS site.

My endocrinologist told me that my thyroid is now totally inactive because of 2 radioactive iodine treatments. I have CBC, B12, ferrous TSH free T3 and Free T4 done every month. I keep copies. When I came down with an odd ‘menopause type’ problem I was sent to so many specialist that all had a different opinion (one actually wanted to test me for cancer). The physiotherapist I go to has told me that my muscle weakness is causing my pain (and as I mentioned I am too high right now and my upper leg strength is poor). Lucky I found her as she has helped me more than the specialists. Originally I was diagnosed with Graves after a hysterectomy, the Dr. only tested TSH and T4 total. After a 15 minute apt. I was told I had graves and put on PTU’s. I got really sick from the tapazole and was refused an appointment for re evaluation so my GP sent me on to anther specialist. A uptake test was ordered and I have a copy of the results, my thyroid did not take up the majority of the iodine, but the Dr. said I had graves and ordered RI31 without prescribing prednisone for my eyes (the first Dr. said my eyes were bad, the second said they were fine) two months later I was put on .175 synthroid and 50 mg. of atenenol . The atenenol blocked the heart irregularities with such a high dose (I am currently reducing to .1 as .112 is too high). I recently requested all antibody tests including a TSI which is fairly expensive in Canada. All tests are negative for graves. I have had three ANA tests done all negative, SS test negative all other blood work normal. The only thing out of wack is thyroid levels. I was told that my TSH has to be suppressed to make me feel better so that the T4 and T3 (free) values will come up. I am tired of trying this theory out…anxiety/panic attacks just to go out for a walk with my dog. I have never been able to take high doses of any medications. Right now I am using a small part of an estrogen patch to block some of my thyroid function so that I can function! Also it is helping my dry mouth, it is not as bad today. I also have increased my fluids because of the frequent urination and bowel problems.
I have seen my eye surgeon and he would like to review all of the medical records from the first two Dr.’s. He has told me that 1 in 20 people have eye problems because of being hyper (and not having graves). He has told me I am that one!! Sorry for venting but I have been going through the mood swings (depression too, which I unusual for me) I have another eye surgery (corrective as well as a biopsy this summer. I lucked out finding such a wonderful eye surgeon. I did end up with glaucoma because of the OD.
I appreciate all comments and feedback. I will be seeing my GP on Wed and think I need to find a new endocrinologist.
Marg

[msled]

#1180075

sorry to add more info….my endocrinologist told me that I am both hyper and hypo and that graves only shows its ugly face during certain times of your life, puberty, pregnancy and menopause and that all of my aches/pains, mood changes, need for sugar and carbs (which is not like me, she checks me for diabetes all the time always negative) are not thyroid related!!! I have researched through all of the major universities in the states (Tufts, Berkley, Michigan, John Hopkins as well as the endo. journal articles and they all tell me I am right (and my eye surgeon agrees) I never had graves I had a transient hyper attack due to the iodine used for my hysterectomy. I have been kept hyper since 2002 (four of those years I needed to be as my husband was dying from cancer).

Sorry I vented too much. I am angry, hurt and have lost my relationship with my sons’. They have told me not to bother my family and friends with this problem, deal with it!

Marg

[Stymie]

#1180076

Hi msled.

I’m so sorry you are going through this right now. I also have the dry mouth and was tested for SS. All of my tests came back negative as well. I belong to a SS forum and quite a few people I have spoken to had the RAI done like we had and have SS symptoms now.

I am going to see my endo early July and plan on talking to her about whether the RAI can cause your salivary glands to essentially “dry up?”

I don’t know if any of this helps but try using the biotene products, brush 3 times a day and floss. I’ve been told that you have to be extra vigilant about your oral hygiene. I would also talk to your dentist as well and see if there’s Anything he can do to help. I’m going to a new dentist next week.

Good luck ! I will let u know any info I find out!

Diane

[msled]

#1180077

Thanks Diane

I have been using the biotene products and flossing most of my teeth, gums are dry and cut easily. I went to my dentist last week (I have some dental implants and the gums are receding!!). He told me to buy sugarless sour lemon candy and chew sugarless gum which I have been doing. I did read that burning mouth is more common with hyper symptoms as well as SS. I am hoping with my dose change that my muscles will not hurt as much (I have always been a distance walker and have been having problems ever since the dose was increased). Weakness in upper legs is putting too much strain on groin and shins.

Let me know what your endo. says. I see mine on the 8th of July. She won’t like what I am doing (my GP does as she sees me all the time). I should have valet parking

Marg

[Kimberly]

#1180078

Hello – I’m sorry to hear that you have gone through all of this! It’s difficult to determine in hindsight whether you did or did not have Graves’, so the important issue for now is to focus on getting your levels stabilized and getting your quality of life back.

The only case where I’ve heard of doctors deliberately suppressing TSH is in thyroid cancer survivors, as this is believed to reduce the risk of a recurrence. If you are interested in a second opinion, the “Looking for a Doctor?” thread in the announcements section of the forum has several different search engines. Although the sponsoring organizations are US-based, they have members all over the world. In fact, the American Thyroid Association had their annual conference in Canada last fall.

As for the family issues, if your sons would be willing to read some of the posts on this forum, they would discover that dealing with thyroid issues is no easy task. I hope that they eventually turn around.

Wishing you all the best!

[msled]

#1180079

Thank you for the information Kimberly. I am going to ask my GP for a referral to a new endocrinologist tomorrow. The wait list in my area (right now I travel to Toronto) is 6-9 months. In the mean time my GP can order blood work and hear my ‘complaints’. I had read that cancer patients have their TSH supressed but was lead to believe that my thyroid was now ‘dead’ and it has to be supressed to feel well. The burning mouth problem and everything else adds to the anxiety.

Thank you for your help. I know my sons will not take time to read the forum, I wish they would!!

Marg

[msled]

#1180080

Thank you for the information Kimberly. I am going to ask my GP for a referral to a new endocrinologist tomorrow. The wait list in my area (right now I travel to Toronto) is 6-9 months. In the mean time my GP can order blood work and hear my ‘complaints’. I had read that cancer patients have their TSH supressed but was lead to believe that my thyroid was now ‘dead’ and it has to be supressed to feel well. The burning mouth problem and everything else adds to the anxiety.

Thank you for your help. I know my sons will not take time to read the forum, I wish they would!!

Marg

[msled]

#1180081

I will check out the list. There are not many endocrinologists outside of the GTA (greater Toronto area). In fact if you have an endocrine emergency its is an hour and a half drive to a hospital that can help with no guarantee someone is oncall to help.
msled

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