Diagnosed with Hypo-Thyroidism, any tips on this? UPDATE

[DiscussDisney]

I do have some fatigue and just an overall laziness feeling. My regular doctor said the laziness feeling is probably depression (gave me meds for that though, but I don't feel better). Additionally, I have dry patches of skin and very dry mouth and eyes (not sure if those are symptoms or not). I guess you could say I have an overall feeling that something is not right. Also, I have been trying to lose weight and am finding it almost impossible. I have been exercising, eating right and nothing. But if I eat too much one day, I'll gain like 3 pounds

I was so happy to find this great post and thanks to everyone who contributed! I am thinking about going to an endocrinologist for a second opinion. I just hope my primary Doctor will give me the referral. What do you guys think?

I think you are hypo. How do you feel? Do you see an internal med doc or an endocrinologist? I think an endo would treat you, especially if you are symptomatic.

 

[Christine]

Hi everyone,
Quick question. My doctor said I was borderline hypo-thyrodism. My TSH was 5.70. He feels that I do not need medication. Is he correct or should I press him on the issue. Thanks.

Oh, you are hypothyroid. Get a new doctor. They have changed the limits for hypothyroidism. It is now having a TSH above 3.5, I believe. Even under the old guidelines of 5.5, you are still hypo.

 

[Christine]

Do any of you have trouble falling asleep? I was wondering if my dosage was to high and that may be the cause. I see my Endo next month, he wants me there every three months.

Patty,
Yes, I have trouble falling asleep. My TSH levels are deliberately kept low because of previous thyroid cancer. My TSH is at about .24 right now (hyperthyroid).

By the way, I'm also in Northern VA. Who do you see for an endo? I'm always on the lookout for a good doctor. I could use a good GP too if you know one!

 

[Patty3]

Christine, I love my endo, his name is Dr. Bernanke. He is in Alexandria and I have been going to him for years. I used to go to Kaye in Woodbridge. Kaye wanted a second opinion in regards to a biopsy and that is when Bernanke was recommended. He is not taking new patients unless they are endo patients, last time I asked his office this question for a friend. Bernanke himself has had thyroid surgery and I believe he is hypo as well. I just love him. I use him as well as my GP since he is an internist. We wants me there every three to four months to check my levels as well as high blood pressure.

I thought my difficulty in falling asleep must have something to do with my thyroid medicine. I am up sometimes until 2AM trying to fall asleep.

 

[Christine]

Christine, I love my endo, his name is Dr. Bernanke. He is in Alexandria and I have been going to him for years. I used to go to Kaye in Woodbridge. Kaye wanted a second opinion in regards to a biopsy and that is when Bernanke was recommended. He is not taking new patients unless they are endo patients, last time I asked his office this question for a friend. Bernanke himself has had thyroid surgery and I believe he is hypo as well. I just love him. I use him as well as my GP since he is an internist. We wants me there every three to four months to check my levels as well as high blood pressure.

I thought my difficulty in falling asleep must have something to do with my thyroid medicine. I am up sometimes until 2AM trying to fall asleep.

Patty,
That is *too* funny!! That's exactly who I see also for my thyroid cancer (that is why he had thyroid surgery). He is a very good doctor. I also used to see Dr. Kaye but had to leave him because he had little to no experience in thyroid cancer.

Unfortunately, Dr. Bernanke has never "volunteered" to be my GP. In fact, when I was having many troubles recently, he asked if I was seeing a GP. When I said "not really" he didn't jump to do anything. Sometimes I think I'm too much for him to handle!

 

[Patty3]

Christine, what a small world. I love Bernanke and really like his nurse as well. In the beginning, I thought she was standoffish, but we have warmed up to each other. Bernanke never offered to be my GP, I just told him that he was my primary doctor. Did you know that he volunteers one day a week at a nursing home? I bet we probably had the same surgeon for our thyroid surgery, Dr. Addison. How often does Bernanke make you come and see him? This is too funny. We should schedule our appts back to back so we can meet!

 

[crz4mm2]

I do have some fatigue and just an overall laziness feeling. My regular doctor said the laziness feeling is probably depression (gave me meds for that though, but I don't feel better). Additionally, I have dry patches of skin and very dry mouth and eyes (not sure if those are symptoms or not). I guess you could say I have an overall feeling that something is not right. Also, I have been trying to lose weight and am finding it almost impossible. I have been exercising, eating right and nothing. But if I eat too much one day, I'll gain like 3 pounds

I was so happy to find this great post and thanks to everyone who contributed! I am thinking about going to an endocrinologist for a second opinion. I just hope my primary Doctor will give me the referral. What do you guys think?

You need a new doctor!! Yes, you are hypo. How about being cold? Constipation? Problems with your period?
You need to be treated.
Good luck.
Cathy

 

[Nicolepa]

I am on the other end (hyper), but I just wanted to make a comment that I haven't seen made. Just because your numbers are in the "normal" range, doesn't mean everything is OK. I have been in remission for 4 years or so, but when I was being treated I still felt like crap at one end of the "normal" spectrum. My numbers had to be more at the middle of the spectrum. It took us two years to stablize my numbers so I got to a point where I could tell him, I feel good but I'm still a bit low/high etc.

Do not let a dr tell you you are fine because your numbers are normal! If you don't feel right keep pressing! A great site for information is www.endocrineweb.com. Sorry if it's been mentioned already!

 

[Laurajean1014]

Sorry if I don't remember your names, but I will try to help answer some questions, based on my experience (I have no medical knowledge other than what I have read).


If you are borderline anything over 3.75 on your TSH, and have the symptoms, it will be your choice to start the meds. They are very easy to take and can make you feel better (more energy, etc). If you have non of the symptoms, than just get checked every 6 months to make sure you are still borderline.

It seems that Mono and your Thyroid are somewhat related. I do not know how but many refer to thyroid problems as a result of mono and Epstein virus.

I had mono when I was 12 and then had (what I thought) was a relapse 6 years later. (I dated a guy who just broke up with a girl that was diagnosed). I had all the symptoms, but as you know, you do not get it again.

Weight is not directly involved with HT. It is a symptom due to lack of energy and stamina. However, if you have any of the other classic symptoms, see a Doc asap. It can take over 8 weeks for the meds to properly work and can take 6 months to get you on the right meds.

A good Endo is like a good husband - don't lose him/her. They are worth mucho dinero!

I don't have a sleeping problem (and I am still not on the "right" amount of meds), but I used to go to bed at 9:00 and now I fall asleep at 11:30-12:30 - I love that! I also don't get tired walking and doing "life."

DiscussDisney - according to the new med books, you at 5.70 are hypo. I had this same issue. My doc said I was fine and then I had to update him on the current levels. He realized his oversight and put me on a higher med.

Thyroid problems are heretitary. However, years ago they did not check it as they do now. Most just got heavy, couldn't reproduce, dealt with the hair loss and went on............... thank God for early detection and meds.

 

[hiwaygal]

It seems that Mono and your Thyroid are somewhat related. I do not know how but many refer to thyroid problems as a result of mono and Epstein virus.

Just to throw in another thing I've heard...mono and Epstein Barr virus are also known as Chronic Fatigue Syndrome and are closely related (if not the same) to Fibromyalgia. These are auto-immune conditions. Other auto-immune conditions include diabetes (some forms), some thyroid issues (i.e. Hashimoto's thyroiditis), and polycystic ovarian syndrome.

From what I have read (and I'm not a doctor either, but have found some wonderful resources along the way ) when you have one auto-immune condition you are more susceptible to others.

But don't panic! Just because you have thyroid problems does not necessarily mean you will have these other problems, nor does it mean you "might" get them...you (and your doctor) need to first determine the reason for your thyroid condition and a FULL thyroid panel (actually a full blood-screening) will tell them. Most doctors only routinely check the T4 and T3 numbers, which don't give the whole picture.

This link is FABULOUS for helping you interpret your own test results and gives the updated levels (if you need "documentation" for your doc):
http://thyroid.about.com/library/howto/htthyroid-test.htm

Anyway...I hope we all learn that the doctors don't necessarily know everything. We "should" try to make them understand that they need to treat US not our numbers!

Laura is 100% correct that a good endo is like a good husband...DON'T LET THEM GO!!!

 

[Laurajean1014]

Thyroidism can do a number on your cholesterol. During my med rehab, the Dr. said don't worry about your cholesterol. It went from 193 to 163 to 143 and now is at 204! Doc says that the meds will regulate the thyroid, which will regulate lots of other things in the body, including cholesterol.

The thyroid is a very important gland.............it tells the pituitary what to do and that tells the brain and nervous system how to function properly!

 

[DiscussDisney]

Hi again everyone,

Thanks for the info so far. Well, I did blood work over. TSH still at 5.70, but the doctor says T3 and T4 (sorry, not sure what that means) was in the normal range. He also claims the 5.70 is in the normal range. When I mentioned about the new TSH guidelines, he kind of fluffed it off and said everyone has different opinions . He does not want to medicate me as he feels it is not necessary (and could possibly hurt me). He does want me to re-take my blood work every 3 months.

So here is my question, do I go see an endocrinologist for a second opinion? My concern is that I will have to ask my Primary for a referral and I don't want him to get insulted. Or is my thyroid condition not that bad and I should wait to see what happens in 3 months? Any thoughts? TIA...

 

[Laurajean1014]

TSH still at 5.70, but the doctor says T3 and T4 (sorry, not sure what that means) was in the normal range. He also claims the 5.70 is in the normal range.

Do I go see an endocrinologist for a second opinion? My concern is that I will have to ask my Primary for a referral and I don't want him to get insulted. Or is my thyroid condition not that bad and I should wait to see what happens in 3 months? Any thoughts? TIA...

Even though a TSH level between 3.0 and 5.0 uU/ml is in the normal range, it should be considered suspect since it may signal a case of evolving thyroid underactivity.

1. Living Well With Hypothyroidism: What Your Doctors Don't Tell You...That You Need to Know by Mary J. Shomon, author of About.com Guide to Thyroid Disease, 2000 p. 252:

"The current TSH levels used by laboratories to define the "normal" range of thyroid function and the use of the TSH test as a primary means of diagnosis need to be significantly reevaluated. The .5 to 5.5. "normal" range for thyroid function does not give enough information for diagnosis anymore. Research reported in the British Medical Journal found that TSH levels above 2 are likely not normal and instead include people at high risk to develop thyroid disease. This means that the real "normal" range is probably far narrower and more concentrated at the lower end."

This may help you - I was informed (although cannot locate it at this time, that over 3.5 (TSH level) was considered hypo. On meds, I am currently 5.05 and still trying to get it down to 4 or below. My general practioner and I agree that I should be on Synthroid.

You may have the dawning of the disease and some symptoms - that's why your doc wants to have you checked every 3 months.

If you trust your doc then wait for 3 months. If you are concerned that he may be wrong, he should not feel insulted by your request to see an Endo.

 

[6_Time_Momma]

Having trouble lately regulating mine. My last TSH (a month ago) was 9.something. I am on Levoxyl and it was increased to 100 mcg. Still not noticing much of a difference. I have heard that different brands of meds can make a huge difference in your levels.

If you are having symptoms, I would tell your doctor you are not comfortable letting it go three more months and then ask him for the referral.

 

[Christine]

Having trouble lately regulating mine. My last TSH (a month ago) was 9.something. I am on Levoxyl and it was increased to 100 mcg. Still not noticing much of a difference. I have heard that different brands of meds can make a huge difference in your levels.

If you are having symptoms, I would tell your doctor you are not comfortable letting it go three more months and then ask him for the referral.

6_Time_Momma--

9.something is pretty high. I used to take Levoxyl. It worked well for me but didn't get my TSH as low as Synthroid did. But, that was minimal. For instance, Synthroid .137 would get my TSH down to .3 while Levoxyl .137 would have it at 1.0. You probably just need a much higher dose of meds!

 

[Laurajean1014]

I've noticed the difference in Levoxyl to Synthroid.

Synthoid at 1.00 mg - my level was 5.50
Levoxyl at 1.12 mg - my level is now 6.0

So they upped my meds on Levoxyl to 1.25 - we'll see.

 

[6_Time_Momma]

6_Time_Momma--

9.something is pretty high. I used to take Levoxyl. It worked well for me but didn't get my TSH as low as Synthroid did. But, that was minimal. For instance, Synthroid .137 would get my TSH down to .3 while Levoxyl .137 would have it at 1.0. You probably just need a much higher dose of meds!

I'm quite curious to see what it is next month. What I find wierd is that, when I was first diagnosed with hypo, my TSH was only 5.7, so it seems wierd that it has gone up even with being on meds.

 

[Laurajean1014]

I'm quite curious to see what it is next month. What I find wierd is that, when I was first diagnosed with hypo, my TSH was only 5.7, so it seems wierd that it has gone up even with being on meds.

6 Time Momma - that is very strange - It should not happen. What has your Dr. said about that?

 

[6_Time_Momma]

6 Time Momma - that is very strange - It should not happen. What has your Dr. said about that?

Really nothing, just that we probably need to increase the meds (which they did).

 

[Christine]

I'm quite curious to see what it is next month. What I find wierd is that, when I was first diagnosed with hypo, my TSH was only 5.7, so it seems wierd that it has gone up even with being on meds.

My guess is that your thyroid gland is partially working and is slowly failing. When you were first diagnosed, you gland had failed to a certain point. They are now augmenting with medication but your gland is probably working less then it did, so you probably need more medication.

I swear it is harder to treat hypothyroidism when the gland is still working somewhat, rather than after removal or total failure of the thyroid gland. Because your thyroid gland is still putting out hormones, you're probably going to go up and down.