TSH again

[Way2dry]

I have sub clinical hypothyroidism. My TSH has crept up to 5.26 but my other labs are normal. My symptoms are fairly mild and could be from being slightly hypothyroid or from Sjogren's & lack of sleep due to chronic insomnia.

My pcp said she usually monitors TSH until it goes over 10 and then starts treatment but because I have some symptoms I should start taking a low dose of thyroxine now and see if it makes any difference. 

I would like to know if anyone has sub clinical hypothyroidism, are you being treated for it and what was your TSH when you started treatment?

Also is it possible to have Hashimoto's and have normal labs except for TSH?

Thanks!
W2d

[Deb 27]

Way, many labs have normal values and the upper limit is around 4 or maybe 5. They used to be higher but then they realized that most normal folks with no symptoms kept a TSH of about 1-2. 

Did they check you for antibodies connected with Hashimoto's? Hashi's is different from subclinical hypothyroid. If you have Hashimoto's, your thyroid is under attack by your immune system and you need treatment.

My docs treated me when my TSH got to 4 b/c I had bad symptoms.  Why not try a low dose, as your doctor suggested, to see if you feel better?

Maybe someone else will chime in. This is just what I've been told and read about. I've never heard of anyone having Hashimoto's without symptoms or not being medicated.......

Good luck!!!

[Navigator]

I have Hashimotos and my doctor likes to keep my TSH between 1 and 2. I recently had a reading of 4.5 and he wants a new blood test in 6 months.  He may adjust the meds.   I am on a low dose of  Synthroid. What labs are you talking about?    I have normal labs except for white blood cell counts which are not connected to my Hashimotos but with SJS.   Your thyroid labs are T3 T4 and TSH.

[Way2dry]

Thanks for your responses.

Navigator - Do you have any symptoms when your TSH is high?
All my labs are normal at this time except for ferritin. My T3, free T4, and thyroid antibodies are normal, but my TSH is 5.26.

Deb 27 - What were your symptoms when your TSH was high?  I'm not sure how I can tell which symptoms are caused by Sjogren's and which are caused by hypothyroidism.

My thyroidglobulin antibody & thyroid peroxidase antibody tests are normal.  Is there a different test for Hashimoto's? 

[Navigator]

This is going to sound strange but I have never felt better. When my TSH is low I have had heart palpitations and ...welll lets call it IBS symptoms every day.  I have been afraid to leave the house until it all works its way through.   I am actually hoping my meds don?t change.

I am well past menopause and somehow I feel less anxious, I have lost the compulsion to bite my nails and I have lost weight.   My appetite is yes less bit not like I am trying.. I have not been working at it like I was trying to do for the previous 50 years...to no effect.   I wonder if estrogen caused many of my previous issues and now that I am beyond the estrogen years things are looking up.

[irish]

I can't imagine waiting to give thyroid medication until their TSH was ten. It would kill me. There are many things that bother a person with an elevated TSH and often you don't realize how lousy you feel until you start the medication.

I would go on the medication cause it may well improve your life. The thyroid manages a lot of the bodies functions and it is important to keep it stable. Good luck. Irish

[trc1962]

I have encountered the same thing from my primary and an endo and both said subclinical isn't always treated. My highest TSH was 8.68 a year and a half ago and then I had a neuropathy flare and back on prednisone I went and the TSH dropped to 1.9. Now I was back at 7.5 in June and awaiting blood work results. My primary finally said he thinks my thyroid is on the edge of not working right and a low low prescription might be wise to start. we will see I guess. Hoping that you get some answers and feel better!

[irish]

My immunologist says that one can have Hashimotos without symptoms in the early stages....which sounds reasonable. The TSH is generally screwed up when one has Hashimotos. However, I was told that many  people can have hypothyroidism for some time and on meds and all of a sudden the Hashimotos rears its ugly head. Generally most people will end up with Hashimotos. The one test is the TPO or thyroperoxidase antibodies which measure the antibody attack on the body. It is important to have this blood work done when you have thyroid issues.

I have a son who became hypothyroid in his mid 30's and in the last 15 years he has had personality change plus depression, arthritis and generalized aching, weakness, some right sided facial weakness and many other issues. He was not followed closely and was really mismanaged with his thyroid. The TPO is generally 0-35 at his lab. I knew he was in trouble so I got him into my immunologist and he had a TPO done which was over 16,000. Doctor was flabbergasted and put him on 20 mgm of Methotrexate. After some months of this dosage schedule and further blood work his TPO went up to 23,000 and he is now on 25 mgm of Methotrexate. It has been about 3 years on the med and he is down to 11,000 now.

He is not snapping back very fast and the doc is talking Rifampin IV. His diagnosis is Hashimotos Encephalopathy. The antibodies are attacking his brain. This is something that is becoming diaqgnosed more often as the criteria and symptoms have become more diffinite. He is able to work but life is much harder for him. He is tough though and pushes himself a certain amount. He has learned to save himself cause he knows he has to have enough energy to work. Irish

[Way2dry]

Navigator - so glad you're feeling good.    Hope it continues.

Irish- thank you.  I think I will give t-med a try.  I thought I was feeling ok except for a little fatigue & bad skin & hair dryness which I blamed on Sjogren's, but maybe it's my thyroid.  My TPO is normal for now, but it sounds like Hashimoto's could still pop up. 

I am sorry to hear about your son. I hope they can find an effective treatment for him and he feels better soon.

trc1962- thanks.  I think I'll give the low dose med a try.  My primary only prescribed 30 pills to see how it works. I was hoping not to have to add another pill to my collection, but my TSH keeps creeping up, so l'll probably end up on it anyway.  Hope it works for you & you feel better too!

[aussie mum]

It really bugs me that some doctors base there whole diagnosis and treatment of Thyroid issues on the TSH test. It just isn't specific enough.
You can have so much going on but still have a TSH in the normal range. (I'm living proof).

I suggest you ask your Dr to do a full Thyroid Screen... TSH, Free T4, Free T3 and Total T3, Thyroid Antibodies, Calcitonin, Thyroglobulin.
Also ask your Dr to physically examine your thyroid - that is very important.

If your DR is not willing to do the tests, I would find another Dr.

(The statement that your Dr waits until the TSH is 10 before commencing treatment is quite alarming to be honest)

Wishing you all the best.

[trc1962]

I posted on this thread on August 8th with a TSH of 7 something and 10 days later it was at 11 something...find a doctor who will treat you and get help. I didn't fight for help over a year ago when my tsh was higher than it should have been and it is going to take a long time to get things right for me hormonally. Wishing you well and a doctor who will help you.

[xcitableone]

Hi Way,

I've also been diagnosed with hypothyroidism (subclinical per their standards) with my TSH fluctuating anywhere from 1.6 to 7.5. I've seen endocrinology several times, but they seem to think that 10 is some magical number they have to see us hit to start considering replacement therapy. From the little research I've done, it seems completely possible, almost sure of it, that you can have Hashimoto's within the range you describe. I know for a fact mine feels out of whack, and I really need to start treatment for it, especially now that I do have a true Sjogren's dx.

Something to add... I know they've checked my testosterone and estrogen levels about a year ago, and they were way off. my testosterone was around 95 and my estrogen was pretty elevated. I'm a 36 yo male... that T level is typical of an 80 yo male! The estrogen should definitely not be high at all, but it seems my body is converting any T into estrogen. Crazy stuff. Have you had those numbers checked yet?

Best,
Greg

[Kell]

HI, Greg.

MY son has had horrible hormone issue since having testicular cancer at age 25. The only doctors he could get to listen to him at at this clinic. His QOL has increased 10 fold.  defymedical.com

[Sooki]

The symptoms I get with my TSH is high are increased dryness all over, limp and thinning hair, fatigue, weight gain even when eating well, feeling cold especially in hands and feet, dark circles under my eyes. I try to keep TSH around 1, but I admit I feel better when it's below 1!

TSH appears to increase and decrease in the bloodstream and the blood draw measures only one instant in time.  After you know them, symptoms may be a better indication of how your thyroid is doing (although medication changes have to be confirmed with blood tests). 

[Scottietottie]

Hi

If my TSH was that high - I would be ill. I would feel absolutely awful. My endocrinologist has told my GP to keep my TSH under 2. I feel best when it is suppressed more than its meant to be. The Endo said it was OK if free T4 was at the higher end of its range.

Please see an endocrinologist or other thyroid specialist. I really feel you would feel quite a lot better if you were medicated. I always know when I'm slipping hypo when my nails flake, I feel totally lethargic and brain-fog and fatigue are worse than usual. I also feel very depressed.

Take care - Scottie