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TSH and Patients' Experiences: Suppressed to 0.5

Notes

  • Not everyone develops hypothyroidism symptoms when their TSH level is higher than 2 but "in range." The purpose of this compilation is to show that there are a lot of us who need to have our TSH level low to feel well, and that symptoms can seriously affect our lives even when the TSH level isn't very high.
  • Some people have more than one entry because they focused on a different aspect of how their TSH level affected them each time. Entries that mention different TSH levels are included on the page for each level.
  • Unless otherwise specified, all posts were posted to the newsgroup alt.support.thyroid. The website, with instructions on how to access this group and its archives, is at www.altsupportthyroid.org/findus.php.
  • For space reasons, only the most relevant segments of each post are included here.
  • Because of the size of this compilation, it's divided into several parts according to TSH level, as follows:

Suppressed TSH (<0.1 or undetectable)
TSH 0.1 to 0.5


Suppressed TSH (<0.1 or undetectable)

"RMD" July 20, 2001

My TSH is 0.01 and my Free T4 is in the upper quartile and I feel completely well. TSH is just a waste of time in setting doses.

"RMD" May 9, 2001

My TSH is officially "hyper" but my actual FT4 and FT3 are pretty low. I suspect my TSH now might be suppressed with the latest med increase. However, this last med increase has made a hell of a difference — at last I have my "normal" physical endurance back! Welcome stranger! :)

My current Doc says he treats how I feel and there is plenty of room in my FT3 and FT4 figures for an increase in Sodium Thyroxine.

The fact is some of us need our TSH below 1 and maybe even zero to do well. But if your FT4, FT3 figures are still in range then there is no problem. Treating on TSH is not such a good idea, though it is a sensitive test for diagnosis.

I should add I have a family history of dominantly inherited heart problems so they are more cautious with me, since it is important I not go hyper. High heart rates and high blood pressure might have me belly-up! :)

"Mike T." March 2, 2001

a) At what level do you need your TSH to be for you to feel well?

anything over a 1 seems to be a problem. When taking Armour, my TSH is suppressed and provides no useful information.

"RM" December 15, 2000

...for years I was told that I should see a neurologist for the numbness and tingling in my hands and feet that I was complaining about. This was actually when I was already on Synthroid and my TSH was, I think, in the 1-2 range (or maybe a little above 2). I never did see a neurologist and I am only finding out now (I don't want to tell you how many years later) that I am another one of those people who needs to have a suppressed TSH to feel well. (My endocrinologist finally acknowledged this (not in so many words) yesterday because he could see (literally) that I was better after having been sick for so long.

"LuvARabbit" November 21, 2000

My doc lets me be suppressed (latest tsh was 0.17 and I was cold with a temp of 97.0 so he allowed me to raise my armour dose by 1/16th which will likely bring it back down to around 0.08 which is where I feel my best). However, the hyper and osteoporosis thing still concerns him, so I reminded him last visit that I'd had a bone density test and been told my bone density was great...that of a 35 year old, whereas before I was thyroid suppressed I was at beginning bone loss (osteopenia). No hyper symptoms either...latest BP was 118/70 and pulse was 72. If I hadn't found this guy I'd have been up the creek...the other couple of docs thought I was just a hypochondriac because my beginning tsh was 3.3.

"Magda" November 19, 2000

When I was diagnosed, my TSH was 2.5, but the T4 was quite low. Today my TSH is undetectable, and the T4 and T3 are just on the upper side of the scale. Any endo would scream that I'm hyper, but I'm not...

"SH" November 17, 2000

For what it's worth my doctor refused to increase my dose past .1 mg even though I still felt fatigued because my TSH was down to 2.4. He also wasn't willing to add T3. I went to another doctor and then another and now I'm at .132 mg T4 + 15 mcg T3 and feel better than I have in years. My TSH is completely suppressed and my current doctor is fine with that — seems to be a by product of being on T3 but I don't care...I feel 90% normal and will never go back.

"John R." October 30, 2000

Yup, my TSH stays about 0.026 while my T3 and T4 stay dead on. TSH is NOT what we go by any longer, especially since I am on T3/T4 regimen.

"KC" October 28, 2000

My TSH was <0.03 on 175 mcg T4, but had jumped up to 2.17 on 150 mcg T4 (at that level I'm tired and gaining weight).

"BL 1204" October 28, 2000

...my daughter has to have almost undetectable TSH for her to have T4 and T3 levels that are in the middle of normal. Really Dr. Dommisse says get Free T3 in the upper half of the range.

"GR" October 25, 2000

My endo called me and told me to cut back on my cytomel because my TSH was under 0.01 . He told me that my free T4 was 1.5 (range = 0.8 - 2.7) and total T3 was 108 (range = 70 - 205). I asked him why worry about TSH if the T4 and T3 were within the range for the "normal" person? I told him that I am finally feeling normal after 8 yrs. He kept repeating "the standard of care is the TSH value." He told me that my body thinks that the T4 and T3 values are too high and if I don't cut them back then I will pay for it when I'm older. This summer I tried skipping 2 levothyroxin pills per week and I went back into a confusing mental fog. I lost my wallet twice in 25 days and I have police reports to prove it!

"CW" September 16, 2000

For those who have been tracking their TSH numbers for a few years now, at what point on the TSH scale does your system balance start to go "out" of whack and you start manifesting hypo symptoms such as infections, water retention, constipation, GERD, esophagus spasm, sleeping long hours, etc etc. Mine is 1.8 or 2.0....I can go very low, off the scale, without hyper symptoms.

TSH 0.1 to 0.5

"JPost" September 10, 2001

I finally got a copy [of my lab results] and found out that when he said I was fine, I was at 4.36 of TSH on a scale of .5 to 5.0...fine hell!!! I am now at a TSH of .2 and getting better each day now that I'm on Armour.

"Suchman" May 22, 2001

In order to feel well my TSH needs to be below .1 in a "normal" range of .4-5.5. When my TSH is suppressed like this my Free T3 and Free T4 are in the upper half of the "normal" ranges. If my TSH gets over .5 I get symptomatic. I apparently have some kind of a conversion (T4 to T3) problem, and in the past I tested for VERY low T3 uptake (uptake effects the actual amount of usable hormones in your system).

"RC" May 11, 2001

FWIW, the letter from the lab that my GP receives, with the T4/T3/TSH figures on it, has at the bottom the words "A TSH of 0.1 is normal for a patient on thyroxine" — or it may have said "A TSH of <0.1 . . .", it's hard to read upside down. My thyroid hasn't worked since 1985, and I've been on the same dosage all the while (150mcg daily). Until a couple of years ago, I didn't bother asking for the figures at my checkup, but now I do and the TSH level is either 0.1 or even "<0.1". My doc reckons it's OK. So do I.

"Mike T." April 20, 2001

...the TSH is not nearly as good as the free t4/t3. If my TSH was a 2, my t4/t3 levels would be way off and I'd feel just awful. My TSH is currently .5, but the free t4/t3 are balanced in the upper third of normal, t3 uptake is about median. So I ignore the TSH and I am currently sinus-trouble free.

"ElaineP" April 18, 2001

I feel best when my TSH is between .35 and .5.

"PBirger" February 25, 2001

...I feel what you are experiencing. If that's any consolation at all. I also had all the symptoms of hypo for almost 30 years but only tried to address the worst of them and then one at a time because I was afraid to come across like some sort of hypochondriac. Now I recognize that the family doc wasn't particular cognizant of why I saw my gyn, the dermatologist was only concerned with my skin issues, and the internist didn't yet recognize that my tsh of 8 was indeed high enough to indicate a treatable problem. None of them communicated with each other — but they each in turn looked for thyroid problems and each decided that my tsh, at 8 point something was not in the ballpark for treatment. And of course, I had no clue. Then. I am fairly well educated on thyroid issues now. My family doctor, at one point (abt. 25 years ago) — when I actually had the nerve to complain that I could hardly drag myself out of bed, was miserable and depressed for no reason and could not find the energy to do any single thing that wasn't of the highest priority — that foolish, cocky physician told me to "get a life" and then prescribed valium for depression. Another answered my distress over abdominal bloating and gas being a continuing problem by prescribing something containing laudamen or some such thing that I read was considered addictive — to relieve what he perceived to be cramping, I guess. Of course, I know now that the gas and bloating were from a hypoactive gut that wasn't moving the food through my system fast enough and gas formed as a result.

Sorry about going on and on — Please don't give up until you get help. My tsh seems to be best at .1 or less, maybe yours needs to be that low also.

"Wideman" February 24, 2001

a) At what level do you need your TSH to be for you to feel well?

.41

"Nancy N" October 4, 2000

I start to get hypo symptoms when my TSH starts moving up towards 1.0. I feel best and have no hyper symptoms when my TSH is at about 0.13 or less. I do take T3 and T3 in combination, which seems to suppress the TSH, so we (my doctor and I) look at Free T3 and Free T4 levels to determine how I'm doing.

"Marie (UK)" August 17, 2000

The TSH is not always a good indicator of your condition. My latest TSH was 0.1 (under normal range) but my doctor still agreed to a trial increase in thyroxine as I was still very symptomatic and my Free T4 and Free T3 blood tests were low down in the normal range.

"MT" August 4, 2000

I know that I'm getting hypo symptoms when TSH is about 2 or higher.
When TSH was 0,08 a time ago I went hyper.
When TSH is about 0,2 I feel good.