Hi. My TPOab over the years have been in range, last year was 18 (<35). TGab also in range. I am getting an ultrasound done this week to check for nodules.
Is an ultrasound more sensitive than antibody markets for detecting Hashimotos? I really hope it will get me some much needed answers.
Long story short, in 2013 my TSH was 5.30 and in 2014 was 4.20. Latter test done in afternoon so was bit lower, safe to assume 8 months apart the TSH was barely in range (0.30-5.30) and T4/T3 (tested only with the 4.20) was respectively 36% and 24% in range, TPOab was 11 (<35).
Right now on 112mcg Synthroid I had these test results.
0.26 (0.32-5.04)
FT4 14.0 (10.6-19.7)
FT3 4.05 (3.00-5.90)
FT4 and FT3 are just over a third in range, 37% and 36%. TSH dramatically dropped by around 1.5 points without subsequent rise in FT4 10 months ago since beginning stimulant medication for ADHD (possible dopamine interference in thyroid axis, though for most people the lowered TSH is supposed to be transient).
Me and my doctor are quite confused as to what’s going on. He explained that the risk of increasing Synthroid, if we were to dose to bring up FT4/FT3 while ignoring TSH, is to make my body dependent on Synthroid and kill the thyroid, so I’d have to take Synthroid for the rest of my life. Though I do think the lowered TSH is purely artificial from the stimulant medication, so the low TSH shouldn’t scare us anyways.
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Andyb1205
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Your doctor is talking rot. You cannot make the body dependent of Synthroid if you're not hypo. And taking Synthroid won't kill your thyroid. No matter what the TSH says. It might put your TSH to sleep, but it would soon wake up again if the Synthroid was stopped, and take up where it left off. So, no, taking it when you don't need it doesn't mean you have to take it for life.
How on earth does he imagine people with Central hypo manage? They often have very low TSH, and low Frees. If the Frees aren't raised by taking thyroid hormone replacement, they would become very ill. You can't live without thyroid hormone, no matter what level the TSH.
The ultrasound will show if there's been any damage to the thyroid similar to damage done by autoimmune attacks. It will show the size of the thyroid - it will be very small if Hashi's is advanced. So, it should answer some of your questions. But, do educate your silly doctor!
Yeah that’s what I was thinking greygoose. After being on 125mcg desiccated thyroid for a couple years (did no tests in between, didn’t take it with regular routine, was too depressed) my TSH was suppressed, at <0.01 . Having self esteem issues I agreed with this other doc to go off of it (despite Frees being only one third of range).
Only 3 weeks later TSH was back up to 2.50 (possibly lower than previous 5.30 and 4.20 due to nicotine). Over next 7-8 months TSH stayed around 2.50 while Frees went to bottom of range, even dropping below it, and resting at third of range, through the period I was supplementing Vitamin D given the deficiency. In retrospect should’ve stayed on 125mcg NDT or transitioned to equivalent Synthroid while taking the Vitamin D.
The stimulant medication has seemed to, since 10 months ago, induced an artificial central hypothyroidism or something. Now that is weird, but regardless the Frees are more important.
I think the doctor is wrong but he’s been better than others (had increased Synthroid dose despite similarly low TSH). So I need to patiently work with him while getting what I need.
This is the plan we have right now. Since stimulants have a moderate interaction with Synthroid (increased metabolism from stimulant increases Synthroid absorption) doc said we should find the ideal stimulant and dose first (currently titrating, should be done in 3 weeks). Then rerun TSH, FT4, FT3 4 weeks later. By then will have ultrasound results and see if TSH goes back up while on stable stimulant dose and what the Frees are. That’s when I will argue for increasing the dose.
You do know that ADHD is a hypo symptom, don't you? What stimulant are we talking about? I don't see how a stimulate raising metabolism can increase absorption of Synthroid. And if it does increase it, your TSH will go down, not up. None of this makes sense to me.
And I don't think nicotine raises the TSH - from what I've heard, it's more likely to decrease it.
I’ve definitely had ADHD my whole life but my brain was always sharp and I had amazing memory (and fact that large dose of a stimulant actually calms me too much sedating me). But ever since the gain in 70 pounds over 6-8 months (what the heck eh) on top of ADHD my memory became crap. ADHD also runs in the family.
I’ve tried Adderall, Vyvanse and am now trialing Concerta, might go back to Adderall. I noticed that the stimulants worked much better when FT4 was higher too. Online I found a moderate drug interaction exists between Adderall/Vyvanse and Synthroid but supposedly not Concerta. I’ve read many patients taking Adderall and Synthroid for example noting that adjusting dose of one affects the other until finding the sweet spot.
When my TSH was 5.30 and 4.20 I had quit smoking at the time. When my TSH was around 2.50 after the interval of being on and then off NDT (125mcg Erfa or 2 grains) I was regularly smoking almost half a pack a day. Nicotine definitely lowered the TSH but Frees were similar, less than a third in range.
So, your TSH rose after you stopped smoking. That's what I thought. Smoking masks hypothyroidism (nicotine increases T3 to the brain), lots of people find they are hypo when they stop smoking, but it's not the stopping smoking that causes the hypo.
So, why are you stopping NDT and going onto Synthroid? Is that a good move? How much Synthroid?
It seems to me that you must have Hashi's. All this moving around of levels. But you must get your doctor over this quaint idea of his about the body becoming dependant on Synthroid or whatever, it just doesn't work like that, and he really should have a better idea of how it does work, or give up treating hypos, because he's going to keep you ill.
I think it depends on the level of damage, in your case it sounds like you have had this for some time and so it will probably show enough evidence. I had an ultrasound which showed evidence of possible autoimmune activity, but since it was not backed up by antibodies it could not be diagnosed and so I was advised to check again after 6 months.
If my doctor suggests that I will throw this at him! No or low antibodies while ultrasound suggests Hashimotos simply suggests a mild version of the disease or an early stage which will only get worse. That said I think he’s open minded since he ordered the ultrasound despite the antibodies being in range.
Well I never had my TSH tested before the 5.30 and 4.20 results in 2013 and 2014 when I was clean so no idea what it would’ve been when smoking before then. TSH from <0.01 in 2016 simply rose because I came off the NDT, was smoking throughout.
But yeah I wonder if my antibodies were higher during attacks or they’re just naturally lower while doing damage. Ultrasound will answer this I’m hoping, I know a minority with Hashis diagnosed with ultrasound have no antibodies let alone low antibodies.
I had stopped NDT 2 years ago because quite frankly I was severely depressed, going through withdrawal from marijuana (self medicated for years) so very ADHD and confused and questioned myself and everything I had read on the subject. I got PTSD from physical and emotional violence growing up so I withdraw like a child taking his beating when in doctors offices lol. Anyways big mistake weight had went up again this time by over 40 pounds and return of symptoms I had years earlier before NDT!
When I convinced a doctor how I felt much worse during this 7-8 month experiment to see if fixing my Vitamin D deficiency would solve my symptoms he hesitantly put me on Synthroid and has taken forever to titrate it up (had to switch a couple doctors once the TSH was getting low despite Frees still under half of range!). My physical symptoms have been ridiculous ever since I was 19 while everyone else my age has been enjoying their prime, I’m almost 28 now.
FINALLY I’m now on 112mcg Synthroid and posted the labs in original post. Vitamin D is fine (taking 10,000 a day so total 70,000 a week!), Ferritin is fine at 75 though can be higher (haven’t been eating as much lately), B12 was over 600 last time I checked.
But yes, I will tell my doctor that I am willing to take the risk and suppress my TSH to get my Frees up. There is no risk but I will be blunt with him if he brings it up again, I’d rather take Synthroid every day for the rest of my life than lose more years due to doctors’ neglect, at least I can enjoy my 30s cause my 20s are practically gone. A Physio had mentioned I have carpal tunnel syndrome (hand grip like an 80 year old, even brushing my teeth and combing my hair is a hassle) and symptoms of peripheral neuropathy (most common cause is diabetes which I do not have).
Just wanted to say I appreciate all the kind help. I am too young to die but sometimes I feel like that’s what these doctors have been trying to do. Hoping for the best though.
Also this may sound weird but is this normal? With my hands I can move my thyroid not just slightly left and right but from one side of my neck to the other. Lol.
Hi Andy.....I'm not sure if ultrasound is the same as a scan, but a scan I had three years ago opened the answer to my years and years of hypo and hyper symptoms that drove me to the brink!
The scan revealed that one side of my thyroid gland had atrophied and the other side was seriously inflamed. Consequently, through multiple blood tests, I was diagnosed with Hypo whereas I had symptoms of Hyper from the inflammation on the one side. The intake of Eltroxin (Thyroxine T3) was exacerbating the thyroid levels to 'manic' levels.
I would highly recommend anyone who is going through a roller coaster ride with their thyroid to get a scan to see what is actually happening with this incredibly important gland.
Now at 70 I have come off thyroid meds for the past two years, and have got my life back! At this moment in time, I now feel I should again start taking minute ('smidge') amounts of Natural Thyroid every other day, as I notice that my finger nails are altering and I am slowing down too much.
That is pretty interesting! Thanks for sharing. I had to look this up. A thyroid ultrasound is not the same as a thyroid scan, the ultrasound checks for lumps and nodules while the scan checks the function of the thyroid, commonly performed to detect thyroid cancer. I doubt I would be able to get that done so hopefully the ultrasound is enough. Crossing my fingers.
Answering your headline question: yes, people with Hashimoto's always need to get an ultrasound to make sure they don't have thyroid cancer. Thyroid ultrasound imaging is used as the first step to scan the thyroid when someone has a goiter. Ultrasounds are always done on enlarged thyroids or goiters to check for suspicious looking or cancerous nodules. It also looks at and measures lymph nodes. It is used to rule out that cancer is not suspected as being present, as well as to measure the size of the thyroid. If suspicious nodules are found, then an FNA (fine needle aspiration) is done to biopsy the nodules to determine if cancer is present.
The type of thyroid scan I believe you are talking about is a type of nuclear medicine imagining which measures the thyroid and nodules and is usually used on people with suspected hyperthyroidism, to evaluate thyroid function, or on people who either have or have had thyroid cancer. The second part of the test involves a radio active iodine uptake test to measure thyroid function, often times after having cancer.
Hi Shooting Star...yes you are right, it was Nuclear Medicine, but as far as I remember, no iodine solution was used. This scan, suggested by a new lady GP, changed my life!!
So take heart out there, over twenty five years, I have found three wonderful GPs in my search for answers. These miracles are few and far between, while trying some really nasty and costly doctors and Endo's. Don't give up, and keep trying new doctors, until you get some answers and start feeling better.
Hi NtombiSA. Yes, never give up! The answer is out there! Over turn all rocks. If you don't discover the answer under one rock in a timely fashion, quickly move on to the next rock! Seek the answer and educate yourself about your body and your health conditions.
NTombiSA, three wonderful GP's in 25 years? You are very lucky that you found so many great ones! If we think about all the different types of symptoms that we have on different parts of our bodies when we have undiagnosed thyroid disease or Hashimoto's, a person could easily see 50 or many more doctors over many years of misdiagnosis as they are chasing the cause of symptoms, yet not finding the answer. I am not exaggerating. This really does happen!
Don't ever give up! The right diagnosis and the right treatment is out there. Believe it or not, the right treatment will take you back to having little to no symptoms is out there. This is what happens when you receive the right dosage of medication.
Thanks Shooting Star. It wasn't one particular good GP that found a total remedy but each caring and interested doctor gave me some advice and a clue to go one step nearer to the answer. I researched and super researched for easily 15 years in sheer desperation, and each of these doctors put a piece of the puzzle together.
In the end it was really my own deduction of what clearly was happening to me, when I saw the scan.....and experimenting on that deduction that led to success. Educating one's self and digging, digging, digging....not accepting second best, reading many blogs like this one, and listening to recommendations of where to find caring doctors.
Two of these doctors were recommended to me by a nurse working in emergency, at a local private hospital. The hospital nurses have intimate knowledge of all the doctors in your area and which doctors are highly regarded by their patients. Who better to ask?
I have wondered about your doctor's statement myself, when he said
"if you were to dose to bring up FT4/FT3 while ignoring TSH, that you would make your body dependent on Synthroid and kill the thyroid, so you'd have to take Synthroid for the rest of your life."
This thinking may be why so many docs want to use thyroid meds in small doses like 50 mg., keeping TSH around 1 - 2.
I did go off thyroid medication once in 2006 after 4 years on 112 mg. Synthroid and found it incredibly difficult. My TSH had been down to .01 while on it. My endo did make a statement at the time that "if you're going to go off it, now is the time to do so without waiting any longer." I literally felt like a sleepwalker during the withdrawal process. However, my thyroid recovered after about 6 weeks, then showing a TSH of 1.5 on average for years with no meds.
So there may be some thyroids which do not recover if people are on high doses for many years. I would like to know more about this but have not found much in any medical literature.
Did you have your Frees checked when your thyroid recovered?
My TSH recovered from <0.01 to 2.40 in 3 weeks (from June 15 to July 5) but the recovery to produce the Frees took long and was brutal. Starting from a month later this is what happened, I’ll use % in range for the Frees.
August 2016
TSH 2.37 FT4 36% FT3 0% (under)
January 2017
TSH 2.57 FT4 12% FT3 37%
February 2017
TSH 2.87 FT4 31% FT3 30%
As you can see the TSH recovered 3 weeks after going off of 125mcg or 2grains NDT which I was on for 2 years but it took 8 months for the Frees to stabilize at just under a third in range. Those 8 months were absolutely brutal!
Before going on NDT my TSH was 5.30 and 4.20, tests done 8 months apart and latter done in afternoon not morning, FT4 was 36% in range and FT3 was 24% in range.
I will try to look up that bloodwork next week when I get home and see if we did any tests of the frees at that time. It was 12 years ago, so I may not have kept all my copies.
I do remember all my thyroid hormone levels went back to about where they were before I ever got on Synthroid, but am not sure exactly how long it took. My main spell of feeling like I was a sleepwalker in drug withdrawal lasted for 6 weeks. I went off cold turkey, but it took a LOT of fortitude not to give in and go take a Synthroid pill.
Whether the thyroid can recover after being put to sleep with medication for a longer period of time may be individual. My doctors say it shrinks and goes to sleep if enough hormone is taken. Doctors often do this on purpose to stop the thyroid from functioning when people get goiters, thyroid nodules, cancer, etc. My neighbor had a goiter and is on a permanent dose of 200 mg. Synthroid; she has been for over 20 years.
I wonder, in order to recover after not being in use for years, if the unmedicated thyroid must then work to regenerate and grow some new tissue? That could explain why we felt so horribly tired for as long as we did.
Something I just noticed. So back in 2014 when my TSH was 4.20 and FT4/FT3 were 36%/24% in range, 4 months later on 125mcg/2grains NDT these were the results:
TSH 0.02 FT4 54% FT3 58%
That’s a pretty sharp drop in TSH despite the Frees not exactly being in hyper range. It’s as if my thyroid doesn’t simply assimilate the additional synthetic hormones but they replace the natural ones it creates until thyroid/TSH just shuts down and body relies solely on synthetic hormones.
Another thing, my brother is going to see another Endo next week (his current Endo is on vacation so while waiting why not see another Endo that was booked by another doctor before). I’ll get the full thyroid function tests run again but most recently here’s his results, he’s 17.
TSH 1.12 FT4 63% FT3 48%
TPOab 32 (<35)
LH 6.8 (0.8 - 4.9)
FSH 7.6 (0.5 - 10.0)
Prolactin 6.1 (4.6 - 21.0)
Testosterone 12.6 (8.4 - 28.8)
And then a couple weeks later. Mind you, a year ago his TSH was 1.79 (0.47-3.41 given age) and FT4 was 28% in range. Given above results it’s likely that his then iron deficiency and now supplementation raised FT4 (refer to science that shows iron deficiency can decrease FT4).
And then a couple weeks later.
TSH 1.42 FT4 49% (no FT3 done)
He has many low thyroid symptoms related to muscle weakness, weight gain and low metabolism but seems to be related rather to possible primary hypogonadism. But note the antibodies, 32 (<35) so they run in the family though my highest was 18 (<35) last year.
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