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TSH and Patients' Experiences: Above 2

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 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:

TSH 2.01 to 3
TSH 3.01 to 4
TSH 4.01 to 5
TSH above 5
TSH within normal range (level not specified)


TSH 2.01 to 3

"Paula" July 24, 2002

I've never had a TSH above 2.8. At that level, I was so hypothyroid that I had increased blood pressure, insomnia, horrible anxiety, plus of course the usual weight gain and dreadful fatigue. At that level, however, most doctors would pronounce me resoundingly normal. Funny how taking Armour (and then Levoxyl plus Cytomel) completely removed any need for me to take Xanax, and took care of the other problems, as well (stopping but not reversing the weight gain), if a TSH of 2.8 is normal!

"nora" July 8, 2001

TSH of 2,7 is definitely hypo. I was very very tired at 2,39. He [the doctor] needs to look at FT4&3. My FT4 was at the bottom of the reference range.

"Amethyst Ivy" July 2, 2001

In 1999, I asked for a TSH after more hypo symptoms appeared. My TSH was 2.6 & the doctor said I didn't have a thyroid problem. I let it go figuring he was right & that my symptoms were just part of getting older.

In 2000, I was painting my deck & developed chest pain & my left fingers were tingling. This lasted a few days, so I made an appt with my doctor. The EKG was normal, so he ordered blood work. Luckily, the TSH was there too. (probably by accident) This time my TSH was 6.8 & I finally got diagnosed.

I believe that for those of us with most of the symptoms of being hypo, if our TSH is above 2.5. then something is going on with our thyroid gland. The problem is family doctors only do the TSH & nothing more.

"Nick" March 26, 2001

I felt a lot better after starting treatment and my TSH was 2.8.

"OA" February 15, 2001

My doctor also tells me I am normal, but I had so many symptoms at a TSH of 2,39 and a very low normal fT4 that I wanted to try anyway. I got thyroxine tablets and had to sign a paper relieving the doctor of responsibility if anything should happen to me. Anyway, medicines helped at once for the depression and some other symptoms. Still looking for exact dose, now on .125 mg seems right to me. Still waiting for brain fog to lift.

"gaanji" December 9, 2000

When my TSH was highest/worst for me (2.68), I had a sore throat for a month. My doc said it was TMJ, that I was clenching my jaw and it was affecting the muscles on the side of my neck. My voice went hoarse when I sang — at first I thought I had nodes on my vocal chords, but it wasn't quite like that. When I told my doc about it, he smirked and said, "I'm not talking about when you're singing", as if that wasn't a valid complaint. Apparently that didn't fit in well enough with the checklist for thyroid problems, which says you should have a hoarse voice when you're talking. Anything other than that doesn't count, apparently.

He is now my ex-doc.

"MM" December 3, 2000

My doctor wants me at below 1, which delights me, because at 2.6 (my last test) I still feel tired and a little brain foggy, and still ache in my hands and knees. I'm sad every time I read of someone whose doc says, "it's not that bad" and won't treat at 4 or 5, and grateful every time my doctor pushes me a little lower — even if my patience is wearing a bit thin with my body :)

"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...

"MM" November 19, 2000

My initial TSH reading was only 5 something, and my doctor put me on Synthroid and started treatment right away — he considered it urgent.

Since then, even on treatment, I've swung between 3 and 15. but with a downward trend. My doctor says he won't consider me under control until I'm at 0.5, because my upswings will push me higher anyhow, and because of the intensity of my physical symptoms.

I'd consider "slightly elevated" to be 2.5. I think you need to start treatment now, and if your doctor refuses, it's time for another doctor.

"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).

"Paula" September 18, 2000

I had hypothyroid symptoms at a TSH of 1.8, last spring, and for years before — my TSH tests were always "normal" — but apparently that is not normal for *me*. I had a TRH stimulation test which was resoundingly positive for hypothyroidism, when my baseline TSH was only 2.4 to 2.8.

"SH" August 23, 2000

I added T3 and it helped mentally, but physically I was still hitting the wall in the afternoon. My TSH was 2.6 and the doctor didn't want to increase my T4 but I bumped it up on my own from .1 to .112 and then to .125. (I refilled an old .025 mcg script) I haven't had blood work yet but it's been nearly four weeks and so far the afternoon slump has pretty much disappeared. Not sure what the doctor's going to say but at this point I don't really care — I feel better than I have in years.

"CW" August 22, 2000

If my TSH gets above 2.0, I get all kinds of bizarre infections I do NOT get otherwise.

"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.

"Sonya" March 15, 2000

My TSH got up to 22 last March after an increase of Synthroid it came down to 2.8 but I still had many symptoms. They were extreme fatigue, muscle aches and pains, brain fog, and heavy periods. In January of this year I was put on Cytomel in addition to my Synthroid I take 25 of Cytomel and 150 of Synthroid most of my symptoms are gone now and my TSH is in the 1.0 range now I have recently found out that alot of the muscle problems I am having are due to Fibromyalgia. I was very lucky to have a Dr. that treated my symptoms and not my labs this is the first time in 13 years that my TSH has ever been below 2. I really wish more Dr.'s would listen to their patients and understand what it's like to still have so many symptoms.

TSH 3.01 to 4

"Denise~*" April 18, 2001

According to her [Denise's doctor] my symptoms were not enough to be "Hypo" symptoms & I was fine at 3.05 TSH, I just needed a RX for my Depression & emotional problems. I also had Alopecia & needed to exercise more. That would make me feel better & not sleep so much.

Funny how my depression, thin hair, dry skin & emotional problems, and over-sleeping problems are all history now that I found Dr Right who keeps my TSH under "1"!

"NKW" December 19, 2000

I had hypothyroid symptoms for nearly 10 years, and every TSH test came back in normal range. I had a dead-center normal TSH test, and I was so tired I had to lie down on the examining table to wait for the doctor. Finally, a naturopath ordered a full thyroid screen (on my nickel, of course) — and my actual level of T4 and T3 was incredibly low! Turns out I'm just one of the weird hypothyroid people whose TSH is normal.

"ADM" November 30, 2000

When I was diagnosed my TSH was about 10 and by then I was existing off one meal a day and sleeping 18 hours a day and flip flopping with tons of insomnia and feeling like a zombie. If my TSH hits 4 I start getting sick again. But it's hard convincing a doctor of that when the lab range is so wide.

"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.

"C&L" September 16, 2000

I feel lousy, Fatigue again big time, depressed, nails breaking again, swelling and cranky! I called endo and he's sending me for blood test. I started on 25mg synthroid in March, went to 50 and then 75. I asked what my TSH was 2 months ago and he said it was fine and that it was 4. Well fine or not I feel awful and told him so. He said he might boost meds. Uh Duh! Sorry so Long and negative but thats how I feel at 4!!

"LuvARabbit" June 16, 2000

I've had fibro for close 20 years and have only been treated for Hashi's for the last year. Even when I first found out I had it, from my old dr., he didn't want to treat me because my tsh was 3.3 and he totally ignored my symptoms and told me to see a shrink. Funny, with a new doc and armour thyroid, I'm doing so much better, though not completely cured (at least at this point).

"Nick" March 25, 2000

My wife was permanently cold and sleeping 15 hours a day with a TSH of 4.

"ElaineP" March 5, 2000

During all those years I had periods where I felt better, but I never felt normal. The most significant example for this topic is in 1995 I was still feeling awful. Dry skin, cold all the time, needed to sleep during the day, depressed. I think I stopped working around that time. My doctor told me that my thyroid was under control and that it must be "something else". I didn't know much about the tests at the time so I didn't ask about the levels. My mother was worried so she offered to pay for an endocrinologist in NY who treated my grandmother from way back when. After a physical exam he said "you can't keep raising your Synthroid every time you don't feel well" He asked if I ever felt "down". When I told him yes, he said that my symptoms were a result of depression and that he would recommend antidepressants. I cried in the office and was so upset I couldn't even discuss it with him. (I refused to believe that depression was primary and didn't follow through with antidepressants) I did get a copy of the results. After being involved on this NG, I looked back at all the lab results that I had copies of. My TSH at the time of that visit was 3.6. If I only knew then what I know now!

TSH 4.01 to 5

"ElaineP" October 11, 2001

I wasted 3 years of my daughters life by listening to the "experts" tell me that she was depressed. She was put on one antidepressant after another. None of them had any effect. Once she was finally diagnosed — her TSH was 4.6 and the only reason the doctor agreed to treat her is that we had been testing her periodically and it was rising — it made a huge difference. She even grew an inch in a few months.

"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.

"Mike T." November 23, 2000

Most people here and current research shows that your TSH should be a 2 or lower. The lab ranges are just too wide. I've been taking thyroid meds for a year now and if my TSH was a 4.5 I would feel like crap.

TSH above 5

"Suchman" May 22, 2001

During my first pregnancy my crappy endo in PA didn't monitor my thyroid well. He actually lowered my synthroid dose and my TSH shot up to 5.3. Needless to say, I felt like crap. From my 20th week on I had: severe swelling (including purple hands and feet), high blood pressure, NO energy, and severe hair loss. Unfortunately my OB was not experienced treating thyroid patients so he basically ignored everything. I gave birth at 34 weeks. It was very scary, but everything is ok now.

"PB" 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.

"ElaineP" July 13, 2000

Mild is such a relative and worthless term. When my TSH is 5.25 I don't feel like I have "mild" anything — I can't function.

TSH within normal range (level not specified)

"Carol T" September 2, 2001

My daughter was going to bed with her clothes on and using two quilts and a blanket, she had even resorted to taking a hot bath to try to warm herself up. By the time her blood tests matched her symptoms she was a very poorly girl and to boot she was suffering a whole host of related symptoms which required many different medications to clear up.

One of the sad things about the nuttiness of adhering to the 'blood test only' criteria is that she has Vitiligo, and while her thyroid was at its worse, it spread. She also put on a great deal of weight, so she hasn't been able to enjoy being a teenager like her friends have, as she carries the legacy of a 'scientific' medicine, that's so obviously not as scientific as people would like to think.

"MB" September 1, 2001

i had a "normal" tsh, but yet suffered from many symptoms of hypo. i learned from about.com and later my doctor, that there are clinical signs of being hypothyroid. one clinical sign is absence of reflexes!! another 1 is fluid build-up in the tissues. yet another 1 is low body temperature and slow pulse. another is hair loss(head hair and body hair). here is another little-known fact....when your red blood cells appear over-sized and you are not anemic, it is an indication of hypothyroidism. long story short...i failed the clinical test. after just a couple months on armour, i had 50 percent of my reflexes back, had lost 6 pounds of fluid, and have a normal body temperature and pulse. as an added "bonus", my eyebrows have begun to fill in....i have no more chronic constipation, i feel like getting up and doing something in the morning (versus feeling comatose), and people have actually commented that my skin looks "dewy" and healthy (it looked sallow and pale before)....another wonderful thing i've noticed is i can actually eat enough food in a day to nourish my body's requirements and my weight stays stable. i can remember just months ago reading how many servings of protein, fruit and veg, and starch etc. was recommended in a day and thinking to myself "yeah, right, if i actually did this i would weigh 300 pounds in 6 months".

"SR" January 8, 2001

To make the story short, she was diagnosed with Hashimotos disease. Currently her thyroid function tests are normal but she has a high level of thyroid antibodies. We were told nothing could be done except to run periodic blood tests so we could start treatment with thyroid hormone once her blood tests show she is hypothyroid. My daughter complains of throat pain that has been getting worse. She points to her thyroid and says the pain starts there then spreads to both sides of her throat. She also frequently complains of feeling tired ... doesn't want to do anything. She also says she just doesn't feel good, then she cries. I feel helpless!!

[January 13] After all the comments I got from the support group, I called my daughters DR again and he agreed to try her on 75 micrograms of Levothyrox as a trial. After only 4 days of treatment, she is feeling less tired and more like her old self. She is even outside building a snow fort with her sister...a few days ago she refused to play in the snow because she was too tired.