Can total TSH labs change without dosage change? - Thyroid UK

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Can total TSH labs change without dosage change?

bessygo profile image
24 Replies

I looked over the past 4 years of my TSH labs since I was always on .50 mcg Synthroid. Unfortunately I had a useless primary care dr order my TSH labs and she never told me not to take biotin, vitamins, etc. prior to test. Nor did she check my antibodies. I was just put upped .75 mcg since my TSH was 3.46. (I am now seeing an Endo Dr.) In the past my TSH were as follows, all on .50mcg:

April 2019 TSH: 2.29 Free T4: 1.30 Free T3: 2.5 now on .75 but have hoarse voice, (always had insomnia, hair loss, no fatigue, no brittle hair)

TSH FT4 TT3 FT3 Hashi AntiBod. Dosage

Mar. 2019 3.46 1.40 99 2.5 69 50 mcg

Oct. 2018 1.48 1.40 86 ?? 68 50 mcg

Sept 2018 1.71 dr didn't test these 78 50 mcg

April 2018 2.11 1.40 80 ?? ?? 50 mcg

**Mar 2018 3.03 1.40 ??? 2.9 101 50 mcg

Oct 2017 2.04 (primary care dr didn't test these) 50 mcg

In March of last year with a TSH of 3.03 I didn't have the symptoms I got this year, which were sweating at night, low body temp in the a.m. , bad insomnia, always had hair loss, etc. Would the fact that I may have taken a vitamin with Biotin, or calcium, etc prior to test; have given me a false higher TSH since I didn't have those symptoms with that higher TSH score. Unfortunately I didn't discover this support group back then so I had no clue. I developed a hoarse voice in March and have been on .75 mcg for the past 2 months which is weird since I am on a higher dosage and I never had that symptom before. Any insights? You all put my drs to shame!!!

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greygoose profile image
greygoose

I'm afraid we need the ranges to understand those results, because they vary from lab to lab.

Were your lab tests all done at the same time of day? Because if not, you can't compare them. TSH is highest early in the morning, and drops throughout the day.

TSH itself does not cause symptoms. It's low T3, the active thyroid hormone, that causes symptoms. A TSH on its own tells you nothing much once you are on thyroid hormone replacement. :)

bessygo profile image
bessygo in reply togreygoose

Also what is ironic, is that my symptoms other than insomnia, hair loss and voice changes are more similar to hyperthyroidism which I have never had. Nervousness, panic disorder, insomnia, rapid heart beat at times, concentration difficulty.

greygoose profile image
greygoose in reply tobessygo

They can all be hypo symptoms, too. There is no rigid line between hypo and hyper symptoms, they cross over a lot. But, you haven't answered any of my questions. :)

bessygo profile image
bessygo in reply togreygoose

Unfortunately the question marks are because my Free T3 was hardly ever taken. So it seems ridiculous to look at past lab tests. They were usually taken in the morning but prior to 2018, I may have taken biotin/supplements. My primary care dr did not give me special instructions.

The ranges are

TOTAL TSH (.40-4.50) Mine is 2.29 dropped from 3.46 after being raised .25 Synthroid from .50, now on .75 mcg.

Free T4 (.8-1.8) Mine is 1.3 and seems consistent over the past years and after being raised to .75 mcg, my Free T4 is about the same, though my TSH dropped from 3.46 to 2.29.

Unfortunately I do not have my Free T3 (range is 2.3-4.2) except on my last lab : 2.5 which I believe is on the low end. I read that optimal Free T3 should be 3.7-4.2 and mine is only 2.5.

My Total T3 went from 102 from 99 which is miniscule (range 76 - 181)

My labs are always done at the same place and the last few times I have taken them first thing in the morning, fasting, without taking my thyroid pill at 3 a.m.

Here are vitamin levels after a micronutrient test:

Folate>20(range >4.6)

Ferritin??? means I don't know

Iron73 (range 37-145)

B12 892 (range 232-1245)

Vit D 39.3 (range 30-108)

Zinc.7 (range .5-1.0)

Selenium216 (109-218)

I have probably have had Hashimotos all my life. My antibodies have lowered to 68-69 from 101 since I barely eat gluten (I do not have celiac).

My symptoms: temperature taken under tongue in the a.m. is lowish 95.5. Low mood, depression (could be from life's circumstances, death, loss of vision, etc.) My hands and feet can get a bit cold but that could be poor circulation since at night my blood pressure dips to 85/58 sometimes with a fast heart beat. Sometimes I feel a little sweaty at night. I have had hair loss for the past 4 years, but could be alopecia. My eyebrows also are patched. I don't eat much but very healthily and also workout, but my weight stays the same. I am 5'2" and weigh 127 lbs. I was about 10 pounds lighter 3 months ago when my TSH was 1.48 on 50 mcg. and was under stress as well. I have incredibly bad insomnia, NEVER feel fatigued or sluggish, more speedy even if only 3-4 hours sleep. Also mood swings and mind fog probably from lack of sleep.

The most noticeable symptom is my voice has become quite hoarse. I went to an ENT dr and a functional dr who he said it could be Mucopolysaccharide also known as glycosaminoglycans which are sugar molecules found throughout the body in mucus and in fluid surrounding the joints. This buildup lowers the note produced by the voice box. The thyroid hormone helps prevent his buildup so when the gland isn't producing enough it can lead to a deepening ot the voice.

Typically, the progression of voice loss occurs slowly over time making it difficult for individuals to recognize it. A deficiency of thyroid hormone can impede development of the larynx thereby influencing individual vocal quality.

So, obviously I need an adjustment.

I have gotten 2 choices: either increase the Synthoid or add Cytomel. However, according to my Endo Dr. Both the T3 and the higher doses of Synthroid could make my symptoms of insomnia and anxiety worse. My dr would be willing to let me try a higher dose of Synthroid or add T3 medication.

I am so confused on what to do. I don't want to raise my Synthroid to 100 mcg AND add Cytomel to fix my T3. Any advice would be greatly appreciated. I do NOT want to become my speedy and anxious. And since my heart rate goes up at night to make up for my low blood pressure, I don't want the Cytomel to aggravate that. I also would hope that my voice issues would clear if my thyroid was more in order.

Please note that stress and anxiety have plagued me for the past few years of caregiving a dying husband and the insomnia as well. Could that have caused my thyroid issues to have gotten worse? I have been on .50 mcg of Synthroid for years. I am 63. My dr is calling me soon to ask me what I want to do, and I have no idea!

greygoose profile image
greygoose in reply tobessygo

You want an increase in dose, and you want your FT3 tested at every test. It's the most important number. And, 75 mcg (no decimal point) is not much more than a starter dose. It should have been increased every six weeks until your TSH (no total) was 1 or under, and your Frees high enough in range to make you well.

If you are taking biotin, your should stop it a week before the blood draw, because it could skew the results. :)

bessygo profile image
bessygo in reply togreygoose

Thank you. I have biotin in my daily vitamin. I was told to stop biotin 48 hrs prior to testing. Is the point of fasting and not taking thyroid medication prior to lab tests to show the highest TSH score? Isn't that counterproductive? Since TSH scores seem to be quite variable, what is the point? Just asking since when I asked my dr about having to fast prior to thyroid lab test, she says it doesn't matter. I still do though but don't want to question her.

greygoose profile image
greygoose in reply tobessygo

Of course she said that. She doesn't know any better.

TSH is highest in the morning and drops throughout the day, it also drops after eating. Most doctors only look at the TSH, so you want it as high as possible.

If you take your hormone before the test, all you test is the dose you just took as it peaks in the blood, giving you a false high FT4 or FT3. You need to test in the trough between doses to see the normal circulation hormone level in your blood.

I'm not and expert, but I didn't think that was long enough to stop biotin affecting the results.

bessygo profile image
bessygo in reply togreygoose

I'm starting to think I should explore Low Dose Naltroxene to see if that might be better. But that means another dr, etc.

greygoose profile image
greygoose in reply tobessygo

A lot of people find that helps. I haven't been able to try it, myself. But, I really do think you ought to try raising your levo first. You really are under-medicated. :)

bessygo profile image
bessygo in reply togreygoose

Thanks. I'll see what dr says. I think the symptoms I'm having need to be taken into consideration as well since 2 drs I've spoken with said anything under 2 TSH is good and I'm not that far off. But T3 seems consistantly low. And the fact that TSH varies, I dont want to over medicate. Is it true that the more you use synthetic thyroid, the less our bodies generate their own?

greygoose profile image
greygoose in reply tobessygo

These doctors just don't understand hypothyroidism. A lot of people would have terrible symptoms with a TSH of 2, but we're all different, and need our levels where they suit us, not where they suit your doctors.

In any case, they should not be dosing by the TSH. That is the best way to keep the patient sick. It's the FT3 the most important number, because that is the active hormone and low T3 causes symptoms, not TSH. You can have a low TSH, but a low FT3 at the same time. And, if they don't know that, they don't know much about thyroid and shouldn't be treating hypo patients. :)

SlowDragon profile image
SlowDragonAdministrator

We always need the ranges on test results

Can you edit post to include

And adjust layout...it's very difficult to read results

Looks like antibodies are high - confirms Hashimoto's

Autoimmune thyroid disease (Hashimoto's) is most common reason to be hypothyroid. With Hashimoto's levels frequently go up and down a lot

TSH is very unreliable test on Levothyroxine and especially with Hashimoto's

Most important are FT4 and FT3

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised or if under medicated

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

bessygo profile image
bessygo in reply toSlowDragon

Unfortunately the question marks are because my Free T3 was hardly ever taken. So it seems ridiculous to look at past lab tests. They were usually taken in the morning but prior to 2018, I may have taken biotin/supplements. My primary care dr did not give me special instructions.

The ranges are

TOTAL TSH (.40-4.50) Mine is 2.29 dropped from 3.46 after being raised .25 Synthroid from .50, now on .75 mcg.

Free T4 (.8-1.8) Mine is 1.3 and seems consistent over the past years and after being raised to .75 mcg, my Free T4 is about the same, though my TSH dropped from 3.46 to 2.29.

Unfortunately I do not have my Free T3 (range is 2.3-4.2) except on my last lab : 2.5 which I believe is on the low end. I read that optimal Free T3 should be 3.7-4.2 and mine is only 2.5.

My Total T3 went from 102 from 99 which is miniscule (range 76 - 181)

My labs are always done at the same place and the last few times I have taken them first thing in the morning, fasting, without taking my thyroid pill at 3 a.m.

Here are vitamin levels after a micronutrient test:

Folate>20(range >4.6)

Ferritin??? means I don't know

Iron73 (range 37-145)

B12 892 (range 232-1245)

Vit D 39.3 (range 30-108)

Zinc.7 (range .5-1.0)

Selenium216 (109-218)

I have probably have had Hashimotos all my life. My antibodies have lowered to 68-69 from 101 since I barely eat gluten (I do not have celiac).

My symptoms: temperature taken under tongue in the a.m. is lowish 95.5. Low mood, depression (could be from life's circumstances, death, loss of vision, etc.) My hands and feet can get a bit cold but that could be poor circulation since at night my blood pressure dips to 85/58 sometimes with a fast heart beat. Sometimes I feel a little sweaty at night. I have had hair loss for the past 4 years, but could be alopecia. My eyebrows also are patched. I don't eat much but very healthily and also workout, but my weight stays the same. I am 5'2" and weigh 127 lbs. I was about 10 pounds lighter 3 months ago when my TSH was 1.48 on 50 mcg. and was under stress as well. I have incredibly bad insomnia, NEVER feel fatigued or sluggish, more speedy even if only 3-4 hours sleep. Also mood swings and mind fog probably from lack of sleep.

The most noticeable symptom is my voice has become quite hoarse. I went to an ENT dr and a functional dr who he said it could be Mucopolysaccharide also known as glycosaminoglycans which are sugar molecules found throughout the body in mucus and in fluid surrounding the joints. This buildup lowers the note produced by the voice box. The thyroid hormone helps prevent his buildup so when the gland isn't producing enough it can lead to a deepening ot the voice.

Typically, the progression of voice loss occurs slowly over time making it difficult for individuals to recognize it. A deficiency of thyroid hormone can impede development of the larynx thereby influencing individual vocal quality.

So, obviously I need an adjustment.

I have gotten 2 choices: either increase the Synthoid or add Cytomel. However, according to my Endo Dr. Both the T3 and the higher doses of Synthroid could make my symptoms of insomnia and anxiety worse. My dr would be willing to let me try a higher dose of Synthroid or add T3 medication.

I am so confused on what to do. I don't want to raise my Synthroid to 100 mcg AND add Cytomel to fix my T3. Any advice would be greatly appreciated. I do NOT want to become my speedy and anxious. And since my heart rate goes up at night to make up for my low blood pressure, I don't want the Cytomel to aggravate that. I also would hope that my voice issues would clear if my thyroid was more in order.

Please note that stress and anxiety have plagued me for the past few years of caregiving a dying husband and the insomnia as well. Could that have caused my thyroid issues to have gotten worse? I have been on .50 mcg of Synthroid for years. I am 63. My dr is calling me soon to ask me what I want to do, and I have no idea!

bessygo profile image
bessygo in reply toSlowDragon

Also, I started the 75 mcg synthroid on March 5th and about 4 weeks later my voice started getting hoarse. I feel like my other symptoms like anxiety and insomnia have gotten worse but my TSH is nowhere near that level plus I do have Hashimoto (low levels of antibodies....68 down from 101) It is so hard to decipher all this.

SlowDragon profile image
SlowDragonAdministrator in reply tobessygo

Vitamin is OK. Needs to stay over 40ng/ml

Do you supplement vitamin D, or is this natural level?

Do you also supplement B12 or a vitamin B complex?

Both these are at good levels

Ferritin is storage aspect of iron. Not sure if you can get this tested in USA

With Hashimoto's FT3 and total T3 are frequently too low because our conversion can be poor

It's common for conversion to get worse as dose of Levothyroxine is increased.....which is the opposite of what we need

Your results reflect this. Looks like you need to consider adding T3

Initially would suggest discussing with endocrinologist adding 2 x 5mcg T3 per day at 8-12 hours apart

Retesting bloods 6 -8 weeks later. You may need further small dose added. But testing first

Many of us find insomnia improves with addition of T3. So much so, that many of us take last dose at bedtime

But some people find it keeps them awake. Everyone is different. Reaction may be dependent on what adrenal levels are like

As you say, stress and Thyroid problems can be closely linked

bessygo profile image
bessygo in reply toSlowDragon

The dickens is I have a few symptoms of both hyperthyroidism and hypothyroidism :

Hyperthyroidism

Anxiety.

Hyperactivity.

. Irritability

Depression

Hypothyroidism

Sensitivity to Cold

Decreased concentration from lack of sleep.

Hair loss but not. brittle

All the other major symptoms from hypo and hyper I do not have. Except the hoarse voice. That's what makes it difficult to decide to just rely on labs and not symptoms. I dont want to develop more symptoms! Yet my blood work is obviously hypo with Hashimotos.

SlowDragon profile image
SlowDragonAdministrator in reply tobessygo

Many of us find anxiety is hypothyroid symptom and improves with increased dose

TSH can vary by up to 75% over a day. If you have autoimmune thyroid disease, you thyroid will be gradually destroyed and so, for most people, TSH goes up and thyroid hormones fall unless there are regular dose increases.

humanbean profile image
humanbean

Can you put a separate result on each line with its reference range and the units of measurement please. E.g.

Mar 2018 TSH 3.3 (0.5 - 4.5) mu/L

Mar 2018 TSH 1.40 (0.5 - 4.5) mu/L

And if you put question marks or stars next to an answer it would help if you would explain what they mean to you. For us, they are just cryptic symbols with no meaning.

Do you have any T4 or T3 or (preferably) Free T4 or Free T3 information to go with each TSH?

bessygo profile image
bessygo in reply tohumanbean

Unfortunately the question marks are because my Free T3 was hardly ever taken. So it seems ridiculous to look at past lab tests. They were usually taken in the morning but prior to 2018, I may have taken biotin/supplements. My primary care dr did not give me special instructions.

The ranges are

TOTAL TSH (.40-4.50) Mine is 2.29 dropped from 3.46 after being raised .25 Synthroid from .50, now on .75 mcg.

Free T4 (.8-1.8) Mine is 1.3 and seems consistent over the past years and after being raised to .75 mcg, my Free T4 is about the same, though my TSH dropped from 3.46 to 2.29.

Unfortunately I do not have my Free T3 (range is 2.3-4.2) except on my last lab : 2.5 which I believe is on the low end. I read that optimal Free T3 should be 3.7-4.2 and mine is only 2.5.

My Total T3 went from 102 from 99 which is miniscule (range 76 - 181)

My labs are always done at the same place and the last few times I have taken them first thing in the morning, fasting, without taking my thyroid pill at 3 a.m.

Here are vitamin levels after a micronutrient test:

Folate>20(range >4.6)

Ferritin??? means I don't know

Iron73 (range 37-145)

B12 892 (range 232-1245)

Vit D 39.3 (range 30-108)

Zinc.7 (range .5-1.0)

Selenium216 (109-218)

I have probably have had Hashimotos all my life. My antibodies have lowered to 68-69 from 101 since I barely eat gluten (I do not have celiac).

My symptoms: temperature taken under tongue in the a.m. is lowish 95.5. Low mood, depression (could be from life's circumstances, death, loss of vision, etc.) My hands and feet can get a bit cold but that could be poor circulation since at night my blood pressure dips to 85/58 sometimes with a fast heart beat. Sometimes I feel a little sweaty at night. I have had hair loss for the past 4 years, but could be alopecia. My eyebrows also are patched. I don't eat much but very healthily and also workout, but my weight stays the same. I am 5'2" and weigh 127 lbs. I was about 10 pounds lighter 3 months ago when my TSH was 1.48 on 50 mcg. and was under stress as well. I have incredibly bad insomnia, NEVER feel fatigued or sluggish, more speedy even if only 3-4 hours sleep. Also mood swings and mind fog probably from lack of sleep.

The most noticeable symptom is my voice has become quite hoarse. I went to an ENT dr and a functional dr who he said it could be Mucopolysaccharide also known as glycosaminoglycans which are sugar molecules found throughout the body in mucus and in fluid surrounding the joints. This buildup lowers the note produced by the voice box. The thyroid hormone helps prevent his buildup so when the gland isn't producing enough it can lead to a deepening ot the voice.

Typically, the progression of voice loss occurs slowly over time making it difficult for individuals to recognize it. A deficiency of thyroid hormone can impede development of the larynx thereby influencing individual vocal quality.

So, obviously I need an adjustment.

I have gotten 2 choices: either increase the Synthoid or add Cytomel. However, according to my Endo Dr. Both the T3 and the higher doses of Synthroid could make my symptoms of insomnia and anxiety worse. My dr would be willing to let me try a higher dose of Synthroid or add T3 medication.

I am so confused on what to do. I don't want to raise my Synthroid to 100 mcg AND add Cytomel to fix my T3. Any advice would be greatly appreciated. I do NOT want to become my speedy and anxious. And since my heart rate goes up at night to make up for my low blood pressure, I don't want the Cytomel to aggravate that. I also would hope that my voice issues would clear if my thyroid was more in order.

Please note that stress and anxiety have plagued me for the past few years of caregiving a dying husband and the insomnia as well. Could that have caused my thyroid issues to have gotten worse? I have been on .50 mcg of Synthroid for years. I am 63. My dr is calling me soon to ask me what I want to do, and I have no idea!

Margareta3 profile image
Margareta3

Yes TSH can and does change without dosage change, even if you do a blood tests each time approximately at the same time (and fasting). When I look at my test results of the past 5 years I see that TSH has got a different value at EVERY single test. The values range between 0.8 and 7.3 (the same TSH range and the same lab), though statistically, 95% of values are in the range 1-2.

Body needs for hormones (including thyroid hormones) is different each day and each hour depending on multitude of conditions, hence TSH varies to some degree each time it is measured and it is NORMAL.

bessygo profile image
bessygo in reply toMargareta3

So, basically one's dosage should be adjusted more for symptoms since these blood labs can vary. Trying to get a 2.29 TSH to below 2 is like splitting hairs. No? I just don't want to be overmedicated since I feel very hyper with anxiety and insomnia. I don't have sluggishness or bad weight gain. My voice change was astonishing and was hoping adjustment in dosage would help circadian rhythm since I've addressed my insomnia from every angle and thinking my thyroid levels may have something to do with it

In January I got a private test at the same time as the regular GP test (the local hospital is one of the Medichecks' centres). The private test was done first, and (allowing for the extra paperwork for that, the GP test was probably about 5 minutes later. TSH was 0.18 for the private test and 0.04 for the NHS one (same reference range)! Both below the official range but still a big difference - unless one was wrong - which I doubt.

Just shows how variable TSH is.

kiefer profile image
kiefer

What you may be experiencing are adrenal changes, which have a direct effect on thyroid function. You mentioned that some of the symptoms you're seeing now resemble HYPER versus HYPOthyroidism. Low cortisol can cause this (insomnia, sweating, etc.) and increasing thyroid hormone doses can make it worse. In fact, adequate levels of cortisol should be confirmed prior to starting thyroid hormone therapy.

HPA Axis Dysregulation is the proposed term (replaces Adrenal Fatigue) to describe changes in the diurnal secretion of cortisol, where it no longer follows a pattern of highest-in-morning and lowest-at-bedtime. It can become reversed, with less-than-adequate levels occuring in the morning and higher-than-normal levels occuring at bedtime (insomnia, consisting of sleep onset, sleep duration, fractured sleep, early morning awakening issues), leaving the sensation of being "wired-tired" or as though the "sleep switch" in your brain is taped in the "off" position.

Perhaps a cortisol saliva test might give you valuable feedback.

Deterioration of symptoms after start of thyroid hormone replacement:

ncbi.nlm.nih.gov/pmc/articl...

Here is a list of symptoms caused by low cortisol:

stopthethyroidmadness.com/a...

Regarding biotin:

biotinfacts.roche.com/under...

Taking 30-60 mcg doesn't appear to have ANY effect in thyroid blood test results. Taking mega doses (20 - 300 mg) can affect many of the test results, depending upon the individual lab and how they assay their samples.

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