It’s pure and unadulterated CRAZY MAKING. You are on T4-only meds like Synthroid or Levoxyl. You have problem after problem after problem. You go to the doctor who runs the TSH, and he states emphatically “You are normal”.
“I am normal?? Then WHY do I feel like CRAP??”
The above is exactly and precisely what happened to me for more than 17 years while on Synthroid and later Levoxyl. I suffered immensely when I would do anything physical–pounding heartrate, feeling hot, excruciating insomnia, and fatigue SO profound that I thought I would DIE from it. And……I was always told I was “normal”, I was “adequately treated” and that there was no explanation for my symptoms.
Or take the scenario of a gal who recently contacted me in the deepest state of frustration. She had started on Armour over a month ago, has very suppressed adrenals which she is attempting to correct with adrenal support, yet she is flipflopping between hypo and hyper (a sign that she’s not on enough adrenal support, and/or her antibodies still have control). She is also suffering at night with “shaking severe heart palpitations”.
Yet, when she goes to the doctor, he states “your pulse is normal” and he dismisses her concerns and symptoms. And she states “If I go to the emergency room, they will run a TSH and say I am normal which is what they have done for years. I just cannot make myself go back there. I would rather just die than tell me I am normal. I am scared and do not know where to go or what to do.”
Unfortunately, there is hardly a thyroid patient around who doesn’t COMPLETELY understand the above feelings stated by this patient.
It is profoundly and sadly remarkable that the very professionals we seek out to help us, end up keeping us sick because they make ink spots on a piece of paper more important than symptoms…or they fail to listen to and reasonably consider that something else needs treatment–in her case, her adrenals!! We have not been “normal”!! Another good reason this site exists: because doctors fail us over and over, and we, as patients have had to figure it out ourselves, and pass it along. And thankfully, there can be a growing doctors out there who will LISTEN to us!
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17 Responses to “I am normal…I am normal…I am normal……..NOT!!”
Chris H.
About 12 years ago, an Endo diagnosed me with hypo-thyroidism, and put me on 100 mcg of Thyroxine daily. Then about 2 years ago, when I became extremely symptomatic again, my GP checked my bloods, and said that although I was “withing normal range”, I was indeed symptomatic, so she increased my meds to 150mcg per day. That seemed to work for a few months, but the symptoms truly did not settle completely.
Back to the GP…and the same old story….your bloods are within range…. So I insisted on being referred to a different Endocrinologist, who said…… your bloods are within range. Lost weight,….go on Weight Watchers, and you will be fine.
I was becoming worse…..very quickly. Massive hot flushes at all times of the day and night. Severe “cold bones”. Not just feeling cold, most of the time…but cold right to the core. Sooooo tired….very very tired all the time. Insomnia….wouldn’t fall asleep until 3 or 4 am, and would only sleep until 8am. Extremely “foggy brain”. Severe lack of concentration. Shocking memory loss !
All the while, I had been doing my own research on google, and read numerous articles about T3, whereas T4 is the Thyroxine meds that I have been on for ages.
I finally found a wonderful Integrative GP who recognised the issue immediately with absolutely NO blood tests. Just by talking with me, and asking questions….most of which I replied to with “I can’t remember” or “I don’t know”. because my brain had effectively become mush !
The problem was the T4…he told me to immediately stop taking the T4, and said that it would take about a month or so for my body totally rid itself of the T4. He gave me a pathology request to have my bloods tested, and gave me a prescription for T3. He said that I was NOT to start the T3 until after I had my blood tests done. Please note that I had to get my T3 meds from a Compounding Pharmacist, as it is not available through “regular” pharmacies. We then booked an appointment for me to see him again in 6 weeks, then he actually gave me his email address so that if I had any questions/issues, I could contact him relatively quickly. He works at the Integrative Medicine clinic 2 days a week,and also works at a relatively large hospital several days a week.
Well.. I stopped my T4 meds right then and there. I went the following morning (Friday) to have my blood tests done. By Saturday afternoon, I was already feeling somewhat better. On the following Monday I went to the Compounding Pharmacy, and purchased my T3 meds and started on them immediately.
I must also tell you that with the T3 meds, he started me at 10mcg, 2x daily, increase to 20mcg 2x daily after two weeks, and then increase again to 30mcg 2x daily until I see him. He also suggested, in regards to the insomnia, to go on Swisse brand Sleep tablets.
It is now 2 weeks since I started on the T3, and I am totally shocked at how good I am feeling. Today is the day that I do the first increase on my T3 dosage, and I am already so pleased with the difference in my life.
I still have minor episodes of “cold bones”, and the occasional “fuzzy head”, but absolutely nothing compared to the hell that I was in prior to stopping the T4 and then starting on the T3. And yes, the Swisse brand Sleep meds are working well. I am finding that during the past week, I am not needing them every night.
As for feeling tired, foggy, etc….. WOW…what a difference. On this past Saturday evening, I actually stayed up until midnight doing housework and some data entry on the computer. WOOT !! WOOT !! Long live Integrative GPs.
Kevin
I also believe I have many of the symptoms that a lot have commented on but I have seen doctors who say I am in the ” NORMAL ” ranges. I don’t know if they are truly listening . I’m so frustrated . I don’t know where to turn or what doctor to see . Have Seen Endo’s , primary care but still the same answers . Can anyone out there please direct me to a knowledgeable doctor??????? Chicago land area . Please post !
Janie Bowthorpe
Kevin, use this page: https://stopthethyroidmadness.com/how-to-find-a-good-doc
Jane
I am listening to all of this and I am wondering if any of you have been checked for Celiac Disease. My daughter was diagnosed with Autoimmune Thyroid Disease and still had many symptoms after being regulated. After my persistence, I made them check her for CD which came back positive. Maybe not all of your issues are thyroid related. CD and Thyroid Disease often go hand in hand.
Anita Monk Garland
I, too, was treated with Levothyroxine and Synthroid for many, many years….I have had enough of being ill and having no one hear me!! I started seeing a doctor in my area that was recommended on 2 different blogs. He stopped my Synthroid and immediately started me on Armour 1 grain……In 2 weeks, he raised me to 2 grains…….in 2 more weeks he raised me to 3 grain…..so, in one month’s time, I have been put on Armour and had it increased 3 times…..NOW, the problem that comes into play is this…..And do know that I didn’t figure this out until yesterday myself…..When I first saw this doctor, on May 3rd, I was still on Synthroid, a medication I had been on for years, along with Levothyroxine. I switched to Synthroid hoping that it was the generic that waskeeping me sick….So, I had all of this Synthroid and Levothyroxine built up in my body over the past, at least, 20 years….I was put on Armour and increased 3 times within a month…….Here is what I just learned happened over the past 2 months……..My body was FULL OF SYNTHROID WHEN I STARTED THE ARMOUR…….Therefore, I was “OVER DOSING”, not intentionally…….I was putting more Thyroid into an already chemically treated Thyroid……Making me “HYPERTHYROID”……I was LIVID when I realized this yesterday!!!! Surely doctors are NOT that out of touch with what they are doing!!! I, for the past, maybe, 6 weeks, have been irritable, MORE anxious than normal, having trouble sleeping, waking some days at 3 or 4 a.m. for the day, and my insides have been shaking as well as my hands and body at times…..I should have called my doctor around the middle of June to let him know how things were BUT I decided it best I wait until the first of July to just go into the office and talk to him….AND NOW I CAN NOT TELL YOU HOW HAPPY I AM THAT I MADE THAT DECISION! Had I called 2 weeks ago, more than likely, he would have raised me to 4 grain…..My thoughts at the 2 week period of increase to 3 grain was…..MAYBE that was what was causing my anxious, irritable, insomnia state……After reading a story on a blog yesterday, I now know that your thyroid can fluctuate, actually I knew this before, I just didn’t realize the DANGER of it…..IF your thyroid even starts working minimally, and you are Hypothyroid on Thyroid medications, it can cause you to become HYPERTHYROID…..I now see why so many are diagnosed BIPOLAR!! I am upset, to say the least, that I am STILL having to “PLAY DOCTOR”…..I know now……GET ANY AND ALL INFO ON ANY ILLNESS YOU HAVE!! TRUST NO DOCTOR 100% NO MATTER HOPW LONG YOU HAVE BEEN SEEING THEM!! Arm yourself with information……REMEMBER….Knowledge is POWER and that POWER could just save your life!!
Rene
Update: Forgot to mention that also my blood pressure has gone up to 200 over 110. My cholesterol is over 300 with low HDL (the good cholesterol) and high LDL (the bad cholesterol). My triglycerides are way too high as well. Have developed GERD and Glaucoma. My blood sugar is up to 138 and I’m pre-diabetes. My whole body aches all the time, I’m in chronic pain. My hair keeps falling out, I have such dry skin that it cracks open and bleeds and I am out of breath all the time. I’m on three blood pressure medications, a cholesterol medication, acid reflux medication, glaucoma medication, two allergy medications as well as Nature-throid.
Rene
To Karen who posted on Jun 23:
I have Hashimoto’s. I’ve been on Armour for three years. Doctor just switched me to Nature-throid because none of the pharmacies in my area could get Armour. Anyway, to answer your question, yes, I’ve had problems despite being treated on Armour for many years. I’ve been up all the way to 4 grains and still no relief. Still not better on Nature-throid either. Gained 130 pounds and I only eat 1,200 calories a day. Can’t sleep. Extreme fatigue. Depression. Memory problems. Used to exercise every day but now my ankles are so swollen all the time I can barely walk and can only stand for a few minutes. Can barely function. Haven’t been able to work in over 2 years. All thyroid tests come out “normal” yet I am NOT normal. Have switched doctors several times. Seems no matter what I do I can’t find any help. Have no idea what’s wrong. I’m on prescription thyroid medication so I should be back to normal but I’m not. It’s as if my thyroid medication isn’t working, yet tests say I’m “normal” but I have very severe hypothyroid symptoms. Does anyone here know what this could be and how I can get better???
Susan
I have had thyroid problems for more than 20 years. One doctor removed a “almost all” in 1985, then followed up with a .1 dose of levothyroxine for years without any additional tests. Four years ago a different surgeon removed a softball sized substernal goiter along with “almost all” my thyroid. My dose of generic levothyroxine never changed, with a test only once a year. I continue to have almost every symptom of hypothyroidism in your lists, but the TSH is 2.8 so, of course, the symptoms must all be due to diabetes or medication or even all in my head. My doctor said no matter what I could do it would only get wrose, then doubled the diabetes medication. The symptoms only get worse each week. There is no M.D. in our area of 100,000 in your doctors’ list. I have been to four doctors in the last three years. Maybe I should just give up and give in — buy a wig, stop playing music, and curl up in a corner with mega-size pain pills that don’t work.
Rose
Even though it’s been 6 years since your comment, you may still be searching, or others may see this so just so you know, you can buy Nutrimeds or Thyro Gold dessicated thyroid from their websites without a prescription. It is the whole gland, including the hormones (unlike most OTC thyroid glandulars). I am using nutrimeds at the moment and find that it works better for me than Erfa “Thyroid” (canadian version of Armour), but you do have to take more with Nutrimeds. Apparently Thyro Gold is a lot more potent, so I ordered that and hopefully it will work well.
Robyn
Rose, I am curious…. Do you have a thyroid? I don’t. Have been on synthroid for over 20 years and really want to get off it and try something natural. I can’t find a doc to work with me… Don’t trust them anyway. Knowing I can get desiccated thyroid OTC excited me…. Scared to try it tho because as I mentioned don’t have a thyroid….
Janie Bowthorpe
Robyn, here’s how to find a much better doc: https://stopthethyroidmadness.com/how-to-find-a-good-doc…and nothing to be afraid of in trying NDT. It’s giving you exactly what your own thyroid would have been giving you.
jeri duncan
I just started taking thyroid meds 8 weeks ago. I didn’t feel relief, then did, then didn’t then did and now don’t and in addition all my joints ache badly and I am very swollen in my face and fingers. I am depressed and agitated on 88 mcg. of Synthroid. I am thinking of not taking it. They said I had a goiter and was borderline for years and then dropped a little bit. But what is that comparted to this. I call them on the phone and they say take more, even though they said I had fallen into normal at 25 mcg. Do they even care with so many patients? I now feel like I am suffering from symptoms of too much medicine. Swollen and terribly painful joints, (not before), agitated and joyless (not before) swollen fingers, calves with veins visible, I’m a wreck. Do they know what they are doing? And I have been gaining weight.
Sue
I had one enlarged, non-cancercous thy lobe removed. And have been taking thy meds for 16 months , , ,
oh the DREADED normal! The problem as I see it: while we may fall within the V-A-S-T range of NORMAL, there is OFTEN room for improvement within those ranges. Hearing “NORMAL” will forever make me cringe
Administrator
Hi Kristi. On the left of any page are links, and go to the one called HOW TO FIND A GOOD DOC. Time to fire your current doctor, and find a better one, for sure. If you have any questions along the way, use the FORUMS. That link is also to the left of any page towards the bottom of the links! Good luck.
Kristi
So thankful for discovering this website. I have suffered with Hashimotos disease for 10 years and am being treated with Levoyl. I still have very dry skin, hair, and eyes so dry contact lenses just pop right back out. I suffer from insomnia, intestinal problems, and feel like I am going crazy. All my blood work always comes back normal. My muscles and joints ache, and takes me forever to recover from hard mountain bike rides. How do I get on Armour? My doctor will not prescribe it. Do I have to change to another doctor???
Karen
I’ve been on armour for a couple of years and saw great improvement over synthetics but I’m still not where I should be. I still can’t lose the weight I’ve gained (40 lbs), still swollen in abdomen and can’t build stamina despite exercising an hour every day. After about 6 months my system begins to slow down and the swelling gets worse followed by elapse of acid reflux. I’ve increased my dosage several times but doc is telling me I have to cut back. Does anyone else experience this?
Jane
I have had 28 years of NO treatment as Drs said my TSH was ‘only’ borderline and normal. The fact that I also suffered CHS for 26 years, Fibromyalgia for 9 years, headaches, infertility .. all a complete mystery.
My life started to turn around last year when a senior Chinese Dr told me I had low thyroid and to ‘go back’. After finding this site and with his words echoing in my brain … I fight…
Its been 28 years overdue but I will fight until the battle is won.