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

[mtblujeans]

WOW....it sure is nice to have a place to post about things or vent about things that are bothering us and everyone is helpful and no one is critical!!

 

[Laurajean1014]

Christine - An excellent observation. Thank you.

mtblujeans - Glad you are comfortable here!

 

[crz4mm2]

Here's my update.
Partial thyroidectomy in 2004 (april- hashimoto's thyroiditis with HUGE thyroid nodule- non malignant thank god). Been messing with meds ever since.
Saw endo 6months ago. TSH was 0.60..... Was having some shortness of breath, palpitations. Also having some increase in headaches, blood pressure. All around not feeling well. was on 150 mcg of synthroid at that time. Slowly decreased to 112mcg (which ended up being generic). TSH went from 0.80 to 6.82 in 6weeks!!!!! Went back on 'real' synthroid 5+ weeks ago. still the 112 mcg dose. Had labs drawn on tues. TSH now 5.6..... sigh. Am exhausted. don't feel well. have gained back the 15+ pounds I had lost. constipation. cholesterol was high (internal med doc put me on zocor 3 months ago). cholesterol tues was HIGHER on meds than it had been before!!
Endo increased synthroid to 125 mcg. Told me to forget about the cholesterol til we get this TSH settled down and thinks maybe the BP might come down too (am on meds for that too- new since I saw him 6 months ago).
I just want to be able to stay awake during the day
He told me to stay away from the generic med. I had no intention of ever using them again anyway.
A bit of PD for a good TSH in 6 weeks.
Cathy

 

[crz4mm2]

PS. My endo says he strives for a TSH of about 1.

Cathy

 

[Wishing on a star]

Wow, interesting about the differences noticed with the generic. I think I will ask about this at my next appt.

After starting out on Synthroid, my endo prescribed Levoxyl for me. I have been taking the generic without any thought. That seems to be helping keep my TSH under control. (at least within the normal range) That was back when there were so many questions floating around about Synthroid, so maybe that is why she changed me from the Synthroid to the Levoxyl.

Now I am wondering if I should be more concerned with which one I take, and if it is the name brand?

I know I have constant fatigue!

 

[crz4mm2]

My pharmacist (and a patient of mine who happens to be a pharmacist) told me that there were extensive studies done to "prove" that the generics work the same as the brand thyroid meds do (this was a year or two ago) and he (and she) doesn't have any worry substituting a generic for thyroid meds. I know they are supposed to work the same, but in my case, obviously, there is a difference. If my endo (who I trust) says not to use the generic, then I am not going to use them.
I used the generic thyroid meds for YEARS before I had my subtotal thyroidectomy and didn't have any problems with them. I think whatever you start on is what you need to continue on. In my case, the synthroid is working better I guess.
If your labs are ok, you are probably taking whatever is right for you.

What are your labs running?
My endo told me today if we get my TSH down to around 1 I won't need to mess with the dose and won't have to have it drawn except yearly... that will be wonderful

Good luck.
Cathy

 

[huey duey & luey]

I think the cutoff is now at 3.2 rather than 5.0. Anything over 3.2 is now being treated by most knowledeable doctors.

don't mean to hijack, but I also just had bloodwork up. My dr said they do not treat until 10 and my TSH was 7.5. I asked to have a referral for and endocrinologist and he said it wasn't necessary. Also need to add that I am always cold, tired and have very dry skin, But the biggest thing is thats I was followed by a repro endo for years and I cant believe this was never picked up
Tara

 

[crz4mm2]

don't mean to hijack, but I also just had bloodwork up. My dr said they do not treat until 10 and my TSH was 7.5. I asked to have a referral for and endocrinologist and he said it wasn't necessary. Also need to add that I am always cold, tired and have very dry skin, But the biggest thing is thats I was followed by a repro endo for years and I cant believe this was never picked up
Tara

Oh this is ridiculous Tara!!!! I HATE to argue with your doctor!! No, I don't, I would fight tooth and toenail. NO lab would have a 10 as a 'normal' value for a TSH.... jeez. Even the "old" values use 6 or so as a 'high normal".... I don't know what world your doc is living in.
You NEED to be treated.
I would demand a referral and if you don't get it change physicians. Heck, if you lived near me, I would treat you.

Cathy

 

[golfgal]

don't mean to hijack, but I also just had bloodwork up. My dr said they do not treat until 10 and my TSH was 7.5. I asked to have a referral for and endocrinologist and he said it wasn't necessary. Also need to add that I am always cold, tired and have very dry skin, But the biggest thing is thats I was followed by a repro endo for years and I cant believe this was never picked up
Tara

My thyroid wasn't an issue until after the twins, so possibly the birth of your children effected your thyroid. My TSH level was 95, yes that is ninety-five, so there wasn't a question of treatment. It has been stable for about 7 years now.

 

[Laurajean1014]

Crz4mm2 - Uh! What an ordeal! Finding the right dosage is like finding a good man!

Golfgal - 95! Wow, that's remarkable!

Mine was at 25.65 and doc said that it was morbidly alarming.....

huey - If you insurance does not require your internist to recommend, I would try another opinion. Everyone has an opinion but I think you should at least verify your condition with another doc to prove your doctor is correct.

Ask for a copy of your bloodwork from your doc (I do this all the time and I have a journal of all of them). Call an Endo or another internist to see what they say. If they say come in, then have them get the referral from your doc.


Well, I'm waiting for my 125 mg prescription. Since February, we have been trying to get this right! But I can live with it. My TSH is now 5.70 but my cholesterol is 213. It was down to 163, but I still need better meds.

 

[DiscussDisney]

Huey -

I had a similar issue and my TSH was only 5.70. I went to an endocrinologist and he said that was too high and am now on Synthroid 25 MCG to start. My primary didn't want to treat it either, but I insisted he give me the referral to the Endo, which he did. My endo said they treat for TSH levels above 3.5 nowadays.

Good luck!!

 

[Laurajean1014]

If anyone can confirm or deny:

When I was diagnosed with hypo-thyroidism, I met a nurse on a DCL cruise. She told me that in an odd way, I was very lucky. She claims that if HT is caught and treated properly, the odds of me developing diabetes is very low.

I was very happy to hear that with good nutrition and a little pill each morning, I was safer than I was before.

If this is true - that's great news.

 

[Laurajean1014]

Huey -

I had a similar issue and my TSH was only 5.70. I went to an endocrinologist and he said that was too high and am now on Synthroid 25 MCG to start. My primary didn't want to treat it either, but I insisted he give me the referral to the Endo, which he did. My endo said they treat for TSH levels above 3.5 nowadays.

Good luck!!

DiscussDisney -

Good to hear you pressed the issue with your GP and have seen an Endo. Your GP could have given the script to you, but I am glad that you have it.

How long have you been on Synthoid? How do you feel? Tell all!

 

[DiscussDisney]

Thanks Laurajean. I started Synthroid yesterday. My Endo told me I should start feeling better within a couple of months. He told me I had classic symptoms of hypothyroidism. He also told me that many GP's are not up-to-date with the latest findings and generally do not treat the thyroid unless there are extremes in the blood work. Here's hoping things improve. I will keep everyone updated. Thanks again to everyone on this board who encouraged me to see the Endo.

 

[Mickey&JoshNut]

I just read this entire thread. I too have hyprothyroidism and am on synthroid.

Everyone talks about their TSH levl. My endrocrinologist only does a T4 test. Should I ask him why he doesn't do a TSH test???? What numbers should I be aiming for for my T4????

I need some help. I have tried everything to lose weight....weight watchers...gym...walking...you name it I've tried it...I can't lose weight. We went on the 14 day May Repo cruise and I was really good about what I ate and I gained nothing...I was so proud of myself. Since we've been home, I have ate healthy and only had junk food once since we've been home and I went to my GP today and I've gained 9 pounds since June. He had the nerve to tell me that I am in denial of what I eat and just cut back. I eat like a bird as it is. If I was to cut back...I would basically be eating nothing. He also told me that hypothyroidism wouldn't cause the fatique...he said it's all the excess weight I'm carrying.

I walk 3 - 4 times a week for 30 - 45 minutes...in addition to a 20 minute noontime walk at work 3 times a week and my GP told me that any walk should be a minimum of 1 hour in order to achieve any weight loss.

When I got out to my car I just sat and cried. I am so frustrated.

Can someone that is hypothyroid and is either losing or maintaining their weight, could you please give me a sample menu for your day.

Any assistance or ideas would be greatly appreciated.

 

[Laurajean1014]

Mickey:

A lot of hypo's are in this same situation. Technically, hypo only attributes to 10 lbs. weight gain. Okay, gain 10 lbs. and see how you feel, especially when you haven't endulged. You eat more, and weight is easier to add up. It's a vicious spiral.

Last year I started WW and lost 42 lbs. I changed my lifestyle. I did gain a few lbs. back, but I am watching again to keep the lbs. off.

Sample menu:

Breakfast: 20 oz. water and 2-3 egg white omlete with sauteed (in Pam) onions, peppers - any veggie left from last night (I don't use any cheese or corn). (0 points or maybe 1)

Mid-morning: Diet Hot Cocoa (0 points)

Early noon: 20 oz. water

Lunch: 2 - turkey Hot Dogs (Healthy Choice or Ball Park Lites) (2 points)
mustard and sugar-free relish (0 points)
2 Slices of WW bread (1 point)
Small salad with bit of dressing (1 point)
20 oz. water

Snack: WW Giant Fudge Bar (1 point)
20 oz. water

Dinner: Chicken - grilled (2 oieces), twice baked potato and steamed veggie (10 points)
20 oz. water

Dessert: Sugar Free Slim a Bear (2 points)
20 oz. water

That totals less than 20 points - so add extras in there that make up 20 or whatever your ideal daily intake is. I love KC BBQ Potato chips, so I eat 1 oz and they are 4 points. I bought a WW scale and I love it. When I am not weighing food, I am using it for ebay mailings...

Is the Synthoid the right dosage? I am on my 4th dosage this year to regulate my thyroid. If it is not, then that will account for your fatique.

My TSH is 5.40. It was originally 25.59, which my doc said was dangerously low. My T4 - can't remember. But your T3, T4 - make up the total number of your TSH. They are different but all connected.

Do you wear a pedometer when you walk? It may be able to indicate to you details of your body. If you walked a lot, do you lose the next day. If you don't walk a lot, do you lose the next day?

Also, you can see I drink a lot of water. For me, it's the best thing. It make my complexion smooth and it is forgiving if I have an endulgement!

I also weigh myself once a week. I don't want to be discourgage. I have no problem having a bad day, it's a bad life I will not give in to.

 

[Mickey&JoshNut]

Thank you so much LauraJean....I'm going to give your "diet" a try.

I know what you mean about doctors saying let's wait a bit...I had to wait for almost a year and about a 50 lb weight gain before my doctor would agree to refer me to an endocrinologist and that was only after he sent me to a nutritonist who said my thyroid needed to be tested..and what do you know...it was really out of wack!!!! I had been asking for my GP for almost a year to test my thyroid and he wouldn't order the test.

The lady at WW actually told me after my up and down 12 week roller coaster that maybe WW was not the program for me due to the medications I am on (as I also have rheumatoid arthritis)

 

[huey duey & luey]

Huey -

I had a similar issue and my TSH was only 5.70. I went to an endocrinologist and he said that was too high and am now on Synthroid 25 MCG to start. My primary didn't want to treat it either, but I insisted he give me the referral to the Endo, which he did. My endo said they treat for TSH levels above 3.5 nowadays.

Good luck!!

My GP finally agreed to give me a referral, I have an appt with an endo on Oct 3 I will keep you all posted, thanks for the advice about pressing my dr.
Tara

 

[Laurajean1014]

Huey - Good luck to you and please tell us how things turn out for you.

Mickey - Not all diets are winners. Try to drink as much water as possible. Stay active, but don't kill yourself. This mixed with a reduced diet, should do the trick. Not everyone is designed to be skinny, thin, perfect, etc.

Most of us are adjectives like: smart, beautiful, witty, fun, desirable, charming, lovable, knowledgeable, kind and irresistable.

 

[CindyKansas]

Having a thyroid problem I found this to be an interesting thread, even though I had hyper-thyrodism, lost 50 pounds, was eating everything in sight and was in hyperactive mode all of the time. Finally went to the doctor when nobody and I mean nobody could read my writing and I had constant tremors. The doctor took one look at me and asked a few questions and they sent me to the KU Medical Center to an Endo. Ended up that I had Grave's Disease and I found out if I hadn't gone to the doctor there was a good chance I would have had an heart attack and died. The Endo did tell me that after treatment I would gain all of the weight back that I had lost and not to be surprise if I gained a little more back. He was right. It has been 10 years and I still have to go have my blood tested every 6 months since I have had many flucuations in my TSH levels. Right now my TSH is at 6.67 and I take 150mcg of Levothroid daily. I did have mono 20 years ago. Good Luck to everyone.