Does a TSH of 5.16 mean that I have mild hypoth... - Thyroid UK

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Does a TSH of 5.16 mean that I have mild hypothyroidism?

EllaNore profile image
40 Replies

Hello, I'm new to the thyroid group, but am a member of the pernicious anaemia group. I'm in the US.

About 6 months ago, I asked for my thyroid to be tested, because often times people with PA also have other autoimmune issues like thyroiditis or hashimoto's.

My TSH is 5.16. The range varies, like B12 varies, per lab. My doctor's lab thinks that the scale is 0.40 - 5.50

So they don't think it's high. But other labs say the range is 0.40 - 4.0 which would make me for sure high. With such a vast scale, I would think that the closer I was to 5.50, the worse I would feel. It's not like when you hit 5.50 suddenly you're too high and sick. I would think there would be a sliding scale and the closer you got to the high or low number, the worse you felt.

So I wonder if 5.16 was high considering the range. Because I just don't feel good. And just because it's not flagged high, my doctors aren't looking at it. A few more points and it would be considered high. I would think that it was high enough to not make me feel too good and that maybe they should do something about it.

So I guess my question is, does a TSH of 5.16 mean that I have mild hypothyroidism?

My Free T4 was good at 0.80 ng/dL

Range is 0.59 - 1.61ng/dL

Thanks so much for any input.

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Buddy195 profile image
Buddy195Administrator

Your increased TSH indicates that your thyroid may be struggling at the moment, as most people without thyroid conditions have levels of 2 (& below). However, practitioners will likely not medicate with only a slightly raised TSH and a FT4 low in the range. It is likely that they will just monitor your blood results. Have you tested FT3 levels at all?

It is essential to thyroid health that key vitamins are optimal, so I would look to check ferritin, folate and vitamin D levels (alongside the B12 that you already monitor).

EllaNore profile image
EllaNore in reply to Buddy195

Thank you very much Buddy195. I have low B12 because I have pernicious anemia/B12 deficiency, I also have to take D3 once a week, and my folate is actually high at >24 and I don't take folate. I can't figure out why my folate is high. I can't find my t3 results I don't think I have any. But I posted my T4 and my TSH. I'm going to go look at my medical records for the t3. And see if I have that. I already wrote to my doctor and asked them to test me again because these numbers are 6 months old. The problem with my symptoms are that they mimic other things that I have like the b12d, I have blood test results that are borderline low borderline high and they keep being ignored but if somebody was to connect all those dots of almost being low and almost being high, they would see that something's very wrong with me. But they're just excusing things that are slightly high or slightly low but when you've got three or four things that are borderline, they need to start putting those dots together. I'm borderline macrocytic anemic. My MCV actually gets flagged high every time I get my blood tested but they keep ignoring it. They keep ignoring all my numbers that are slightly high or slightly low. And I'm very frustrated. I have nowhere to turn. I'm treating myself for B12 deficiency with daily injections. I don't know how to help myself anymore. I feel like I have nowhere to turn except for this wonderful forum of helpful people like you all.

DippyDame profile image
DippyDame

Medics are supposed to consider symptoms along with labs when making a diagnosis....many ignore this and use TSH only.

TSH alone is not adequate, the most important result is FT3 followed by FT4 but this is largely ignored.

T3 is the active thyroid hormone essential to every cell in the body in an adequate and constant supply

Low cellular T3 = poor health

List of hypothyroid symptoms follows, suggest you make a list of those you experience and point them out to your medic.

thyroiduk.org/if-you-are-un...

TSH of 5.16 suggests your thyroid is failing....given your symptoms you would very likely benefit from T4 replacement

General info re hypothyroidism

thyroiduk.org/if-you-are-hy...

Good luck!

EllaNore profile image
EllaNore in reply to DippyDame

Thank you very much for that information This are pictures of my test results for T4. I'll try to find my T3 but not sure they did that one. I'll post my other results too.

T4
EllaNore profile image
EllaNore in reply to EllaNore

This is the TSH numbers. Thanks again!!!!

TSH
TiggerMe profile image
TiggerMe in reply to EllaNore

TSH 5.16 mIU/L (0.4 - 5.5) 93.3%

Free T4 (fT4) 0.80 pmol/L (0.59 - 1.61) 20.6%

We tend to put things into percentages to smooth out the different ranges used

With fT4 that low it is likely your fT3 is going to be equally low 😕

EllaNore profile image
EllaNore in reply to TiggerMe

Thank you so much. so that is low? I would not have thought so. I am so grateful. I am printing this out to take to my docs.

TiggerMe profile image
TiggerMe in reply to EllaNore

I didn't see the timing of this blood draw was it done around 9am when your TSH would be at its peak? If this was an afternoon draw it will have dropped back..

Seaside Sue has given you loads of great info and advice.... go get em!!

EllaNore profile image
EllaNore in reply to TiggerMe

wow Eeyore100, I had no idea. it was drawn at 8:04am thank you very much!!

TiggerMe profile image
TiggerMe in reply to EllaNore

Loads of really useful info here... thyroidpatients.ca/2020/07/...

SeasideSusie profile image
SeasideSusieRemembering

EllaNore

My TSH is 5.16. The range varies, like B12 varies, per lab. My doctor's lab thinks that the scale is 0.40 - 5.50

It is totally unacceptable that the lab *thinks* the reference range is 0.40-5.50, the lab must know, the ranges are specifically set for their machines. You cannot take a result from one lab and use it with any range from any lab willy nilly, the result has to be looked at alongside the reference range from the lab that did the test. If you had it done at the lab with a range of 0.4-4.0 the result would be different, it would be the same percentage through it's range but the actual result would be different.

EllaNore profile image
EllaNore in reply to SeasideSusie

Thank you so much SeasideSusie, I think that's my fault for the way I wrote that. I'm the one who took my test results and started trying to find answers to whether or not it was high or not. The lab that my doctor used said their range was 0.40-5.50. I'm the one who found other ranges. Another place that I googled and was reading said that the United States lowered the TSH levels and that the new levels were lower. So that's why I was asking. But also 5.16 is close enough to 5.5 to me that I could be having symptoms. So just going by my labs of 5.16 with a range of 0.40 to 5.50 should I be on medication? Sorry I made that so confusing.

SeasideSusie profile image
SeasideSusieRemembering in reply to EllaNore

Here is a graph of TSH in health people, you can see that most are around 1, rarely more than 2, so your TSH is telling you that your thyroid is struggling.

However,

My Free T4 was good at 0.80 ng/dL

Range is 0.59 - 1.61ng/dL

I don't agree that your FT4 is good, it is only 20.59% through range, see screenshot in reply below. A normal healthy person would generally have FT4 at around mid-range or above.

Here is the link to the calculator to work out percentage through range:

thyroid.dopiaza.org/

If you have any symptoms then you need to list them to discuss with your GP, symptoms should not be dismissed, they should be considered in conjunction with test results.

List of signs/symptoms of hypothyroidism:

thyroiduk.org/if-you-are-un...

As you have PA you should have thyroid antibodies tested to see if you have Hashimoto's - Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) antibodies, but bear in mind that these do fluctuate so may be negative one test and positive another, but you can also have Hashi's without raised antibodies just to complicate things.

SeasideSusie profile image
SeasideSusieRemembering in reply to SeasideSusie

FT4 percentage through range

EllaNore profile image
EllaNore in reply to SeasideSusie

Thank you seasidesusie. Gosh I don't know what I'm looking at yet. I've taught myself everything about B12 and pernicious anemia but I don't know the first thing about thyroid. I will be learning that though too. It's hard with a B12 brain to learn all this stuff, but I will. I have to save myself because nobody seems to be doing it

EllaNore profile image
EllaNore in reply to SeasideSusie

Thank you very very much! I thought that my T4 was okay but I believe you very much that it's not okay. Because I feel terrible. Thank you so much. Gosh I love this forum. I can always count on everybody here. I am so grateful that I have this forum to come to. I will talk to my doctor about all of this. I have given them a huge list of symptoms. I think that's the problem is that my doctors are very overwhelmed with my case. Everything is so borderline high or low that it's just all so confusing, to not just me, but I think to my doctors. I have a lot of blood tests that I've had done so if any of you thinks that they need to see any more test results I might just have them. I did not have a t3 test result I looked and they did not do it. Just a T4 and a TSH. So I guess I should make a list of all the tests that I would like them to do for me and see if they'll get them done. I need another TSH another T4 and a t3 and you're saying also maybe an antibody test. I will ask for all of those. Is there anything else I should ask for? Thank you very much. I'm going to go look at all the links that you guys sent. I'm a little overwhelmed.

Some of my symptoms are very dry skin, dry mouth constantly, I cannot lose weight, I'm very sluggish and tired all the time, I have no energy, I get very out of breath, my muscles and my body get very fatigued even just brushing my hair. I had to cut my hair short because it was too hard for me to deal with longer hair because my arms get so tired combing it and drying it. My feet hurt all the time. My toes are numb my feet are numb my hands hurt. My vision is blurry My brain is sluggish, but a lot of these symptoms are because of my B12D. I have way more symptoms just too many to list. Insomnia, apathy, depression, I could go on.

I'm 61 and I feel like I'm as old as my 90-year-old mother who's in better shape than I am. Although she's taken thyroid her entire adult life that I've known and she also has B12 and other deficiencies and she's getting dementia.

Thanks for listening and all your help, everyone!

EchoWS profile image
EchoWS in reply to EllaNore

You also have a family history of hypothyroidism which should be considered. My TSH was 3.3 in a range that went up to 5.5 and my Dr said it could be 3.3, 30 or 100 and all measurements would be equally hypothyroid as over 3 with symptoms. He was wonderful. I had seen one years previous whose position was that my TSH was average - still upsetting.

EllaNore profile image
EllaNore in reply to SeasideSusie

Thank you for the list of symptoms. I ticked off 97% of them. That is crazy!! I am taking it to my doctor this morning. Can't thank you enough

Imaaan profile image
Imaaan

Hi

I'm in Canada and the TSH ranges that is used in my labs are .35 -5.0. I was on Synthroid for 20 yrs and my TSH usually hovered around 3 something and I was sick with symptoms. Occasionally my TSH would creep up to 5 and above and during those times I would have an increase in my symptoms.

If I recall, a healthy person without hypothyroidism has a TSH hovering around 1 but that number is arbitrary and doesn't account for everyone.

EllaNore profile image
EllaNore in reply to Imaaan

Thank you very much Imaaan. So even on treatment you were still not right? Is it better now? I sure hope so.

I am not educated enough on Thyroid to know what those numbers mean YET. But I WILL learn!

Imaaan profile image
Imaaan in reply to EllaNore

Yes even with treatment I was feeling awful but that's because I was a poor converter of t4 to t3 and nobody told me that for 20 yrs. So I was happily prescribed my t4 meds and was told that I was depressed if I had any lingering issues. I had my prayers answered by God when I received helpful guidance through this forum and Tania's Thyroid fb group. I switched to another medication and after 20 yrs my free t3 improved.

Keep pushing through and dont let any doctor gaslight you

EllaNore profile image
EllaNore in reply to Imaaan

Gosh, I had no idea how little doctors know about thyroid. I'm so sorry you had to go so long I'm diagnosed and undertreated and misdiagnosed and mistreated. They blame everything on depression. As if depression is the cause. They need to flip that. If somebody's depressed it's because something is wrong with them and nobody has the answer and they have nowhere to turn of course they're depressed. Depression is not the cause it's the symptom.

I thought pernicious anemia was elusive enough, now I understand what everybody's writing about when they talk about their thyroid in the pernicious anemia forum. They've got double whammies where the doctors don't know how to treat their thyroid and they also don't know how to treat their cobalamin deficiencies. I don't know how everybody's done it this long. We've had to fight for a decent life our whole lives.

Many of us between the two forums have suffered 20 or more years. With not one single doctor taking the time to actually look at us and hear us. It's despicable.

Yesterday I let my doctor have it. I wrote them a letter and I went into the office with my checklist of thyroid symptoms and I said I will not put up with this anymore. I have one life to live and I need to live it as best I can. I'm not going to put up with this anymore. I told them if I was a doctor who had a patient like me I would feel compelled to teach myself how to help them. I'm very offended that my doctor from a small town of 189 people can't take the time to learn about one of his very close patients. I'm not in some metropolis city where there's thousands and thousands of people coming to the doctors everyday. He's got a nice cushiony little job, in a nice cushiony little town, in Mid-America. And he's got a client that keeps coming in with unexplainable issues and instead of saying let me see what I can do to help you, he tells me I don't know anything about what's going on with you, I just can't help you anymore. How could a doctor not want to pick up a book or click on a link that you supply to them so they can learn more about what's going on with you, so they can help you? It's despicable. Doctors are not doctors to help us anymore. Doctors are in it for the money and for the ego. We'll see what my letters do and see if they jump on the ball with this. They told me I could retest all of my stuff anytime so I set an appointment. And I'm going to have it all tested again. Sorry for the rant but it's been hard to deal with this. I've been suffering since I was 23 and I'm 61. This is ridiculous

Thank you for sharing your story.

Imaaan profile image
Imaaan in reply to EllaNore

The way many doctors deal with the chronically ill is horrendous for sure. I'm sorry to hear that you've been struggling for so long . I'm really glad that you're arming yourself with thyroid knowledge and not backing down from the doctors.

My biggest regret when it comes to this worldly life is that I had ignored my bodily symptoms and placed my trust in doctors who said I was just suffering from depression only.

Wishing you all the best on your journey and know you're not alone.

EllaNore profile image
EllaNore in reply to Imaaan

We do trust the doctors. That's what we're supposed to do. Never again. Good luck to you too. Thanks for your help

EllaNore profile image
EllaNore

Thank you ALL so very very much. I have printed off the symptoms and checked them off. I had almost all of them. 97% of them between PA and this.

I took what you all suggested to the doctors and I demanded that they start educating themselves with this because I am not going to end up in a care facility or a wheelchair because they don't want to do their job. I told them I have no where to turn but this forum and that they are doctors and they should try to figure this out for me. I told them I literally feel like I am slowly dying. I told them I am not kidding around and I am very very frustrated and very upset that they don't seem to care. I told them I expect a T3, T4, TSH and the antibody test. I am so angry right now. I went undiagnosed for PA for 38 years. I have been trying to save myself since I was 23 and I am now 61!!!

I am very grateful for this forum. Thank you all for stepping up to the plate once again and helping me. 🦋💙🦋

greygoose profile image
greygoose in reply to EllaNore

Well done, you, for giving them a piece of your mind! I wish more patients would do that.

I would think that the closer I was to 5.50, the worse I would feel.

That's not how it works. Some people can feel terrible with a TSH of 2, and others feel ok with a TSH of over 100. That's because it's not the TSH itself that causes symptoms - it doesn't make you feel anything whether it's high or low.

TSH is not even a thyroid hormone. The thyroid hormones are T4 and T3. TSH is a pituitary hormone - Thyroid Stimulating Hormone - that sends a message to the thyroid to make more or less hormone. So, the medical profession has put 2 and 2 together and made 5, believing that the TSH tells them 'all they need to know'. It doesn't, because the pituitary is just as prone to going wonky as the thyroid is. And the TSH level can be affected by so many exterior conditions - like the time of day, or drinking coffee. So, the TSH is a very bad indicator of thyroid status, and doctors should never diagnose or dose on the basis of TSH alone - which is what they tend to do.

Hypo symptoms are caused by low T3, the active hormone (T4 is basically a storage hormone that doesn't do much until it is converted into T3) which is needed by every single cell in your body to function correctly. Usually, if T3 is low, TSH is high, but there is not a reliable correlation meaning that you cannot relate your symptoms to the TSH level.

As you have seen, a euthyroid (no thyroid probliems) TSH is around 1, never over 2, and you are hypo when it reaches 3. Unfortunately, it's very rare that doctors will accept that. Hence the proliferation of rediculous so-called 'normal' ranges that cause so many people so many problems. (Another reason not to trust the TSH.)

All three blood test results should be looked at in conjunction with each other: TSH, FT4, FT3 (note that is should be the FT tests - Free T4/3, not the TT or T4/3 tests). Just looking at any one of them in isolation does not tell you the whole story. :)

EllaNore profile image
EllaNore in reply to greygoose

Okay! More great information Gray goose. Thank you very much. So I see that TSH is actually just a tool or mechanism that tells your T4 to be released. They didn't even do a t3 on me so I have no idea what that range would be. But I'm going to get that ASAP. This is starting to make sense to me. I will make sure I request the free T4 and the free t3 with another TSH. Is that correct? I'm not wrapping my head around the 20% and how to do the calculation even though somebody gave me a link to the calculator, I'm not sure I understand what I'm looking at yet but I will. This has been so helpful. When you say t3 is needed by every cell in your body, it makes me think that something's not getting into my muscles and my tissues etc and it's causing great fatigue. Put B12 deficiency pernicious anemia on top of that that also affects every cell in my body and keeps it from getting the oxygen it needs I feel like between the t3 and the B12 deficiency I'm not getting the oxygen my blood needs and therefore my organs and my muscles and everything are greatly fatigued. Is this an unreasonable deduction? Or am I thinking incorrectly? I am huffing and puffing with very little exertion. Just chewing a piece of French bread that's very chewy makes my job very fatigued my neck gets very tired and the base of my skull feels very tired and I actually have to stop chewing to give it a break. Wiping my kitchen counter down with repetitive motion in my arm My arm gets very fatigued. Walking I'm very fatigued and huffing and puffing. My feet hurts so so bad. And I just don't know which thing is causing it. Maybe it's a mixture of both. Since they both affect every cell in your body.

I've had other autoimmune issues as well. I also had Lyme disease that went undetected for 37 years. The damage that caused who knows. If you read my bio you'll see everything that's happened to me and why I'm so confused about everything and why it's so hard to find answers for me. I'm kind of had the perfect storm happen in my life and it's made me fall through every medical crack there is. If it wasn't for this forum I don't know what I would do. I'm so grateful. Thank you for this information It's very helpful..

greygoose profile image
greygoose in reply to EllaNore

I see that TSH is actually just a tool or mechanism that tells your T4 to be released.

Not just T4, T3 as well. The thyroid makes both of them - more T4 than T3, but the amount of T3 it makes is still important.

They didn't even do a t3 on me so I have no idea what that range would be.

FT3 is rarely tested because doctors don't understand how important it is.

I will make sure I request the free T4 and the free t3 with another TSH. Is that correct?

Yes. And antibodies - TPOab and TgAB - although they won't always test the TgAB.

I'm not wrapping my head around the 20% and how to do the calculation even though somebody gave me a link to the calculator,

Free T4 (fT4) 0.80 pmol/L (0.59 - 1.61) 20.6%

We calculate the results into percentages because it makes it clearer how far through the range your result is. A euthyroid FT4 would be about 50%, so you can see how very low yours is. Much too low for good health.

When you say t3 is needed by every cell in your body, it makes me think that something's not getting into my muscles and my tissues etc and it's causing great fatigue.

The main problem is not that it isn't getting into your cells - too soon to know about that, yet. The problem is that you haven't got enough T3 in your system to go round all the millions of cells in your body.

The body prioritises the most important organs, like the brain and the heart, and the other parts of the body have to struggle along on what's left. So, yes, it will cause fatigue, but a hell of a lot of other symptoms too, all sorts of aches and pains, etc.

I feel like between the t3 and the B12 deficiency I'm not getting the oxygen my blood needs and therefore my organs and my muscles and everything are greatly fatigued.

Well, I believe that iron is more important where oxygen is concerned. Have you had your ferritin tested? If not, you do need it tested, because it's likely to be low.

Just chewing a piece of French bread that's very chewy makes my job very fatigued my neck gets very tired and the base of my skull feels very tired and I actually have to stop chewing to give it a break.

I used to get that! lol I'd have to stop chewing, take a deep breath, rest a while and then carry on chewing. :)

My feet hurts so so bad.

Oh, I know that one, too! Especially in the morning. I'd wake up and my feet would feel as if they'd be folded in half longways, and pressed flat. I would have to sit on the edge of the bed for a while, before standing up, and wriggle them around before the were capable of taking my weight. It's a typical hypo symptom.

I also had Lyme disease that went undetected for 37 years.

That would complicate things, yes. Is it under control now? I think I may have had Lyme, too, but doctors just don't look for these things - they don't look for anything much, really. They'd much rather just say 'it's all in your head' and pass you on to a psychiatrist! I've probably been hypo since I was about 8 years old, but I wasn't diagnosed until I was 55, because no-one looked for a thyroid problem. :'( That's why I hate doctors - as you've probably noticed if you've read any of my post or replies! 🤣🤣🤣

EllaNore profile image
EllaNore in reply to greygoose

Wow wow wow. I did not expect for you to connect the dots between the chewing and the other and the feet to hyporthyroidism. I've been blaming B12 for all of that. So some of this that's not clearing up is because of my thyroid? Wow I am so glad I decided to ask this question. I am so overwhelmed with all of this I'm sorry if I haven't answered everybody but there's a 6-hour difference between the US and the UK. And I get a little tired.

They gave me antibiotics for the Lyme disease But I feel it did its damage to me after 37 years.

I can't believe you had the chewing issue! I thought it was because I had whiplash from a motorcycle accident I've been blaming that for all these years and was wondering why it wasn't healing. And so then I decided it must be the B12 and the red blood cells didn't get to my muscles and my tissues to heal it correctly. I just didn't know what else to think. I'm trying to connect these dots with no help really. Except for from this forum.

Gosh I sure hope your situation is under control and I'm so sorry you suffered so long. When I was about 8 years old they thought that I had hypoglycemia, but my parents never did the test and so I was always told that I was just too fat etc. So I think I've been suffering from this all my life too. I just don't know and the B12 deficiency my grandma died from that and it runs in our family so I think I've been sick with these things for most of my life. It's been so hard. Especially when your family doesn't think there's anything wrong with you and they believe the doctors. And you have nowhere to turn. It's really very very sad. I'm so glad we have each other here.

Wish you all the best Gray goose and thank you so much for spending the time to explain all of this to me I know how much effort that takes. Thank you very much

greygoose profile image
greygoose in reply to EllaNore

I know exactly what you mean by your family believing doctors and thinking there's nothing wrong with you! They thought I was fat because of over-eating (fat chance of that in our house!), and I was lazy and rather dim. All of which could be explained by hypothyroidism. If anybody had taken the trouble to test! I also think I've been deficient in B12 for most of my life, but due to being hypo. I've never been tested but I don't think I have PA. Also magnesium deficient.

It does like you've been hypo since you were a child. And it could be autoimmune - that's why you need to get the antibodies tested, to find out. Or, it could have been the whiplash that caused it - or the whiplash exacerbated it. But, whatever the cause, it's not reversable, so best to just get on with the task of getting correctly treated, rather than worrying about the past.

I think I've sorted my health as best I can - I self-treat because doctors were never going to do that! But, there's bound to be some permenant dammage. So it's not perfect. And, I am 78 - a frail little old lady lol - so I can't expect to be rushing round like a 12 year-old. I get by. :)

EllaNore profile image
EllaNore in reply to greygoose

It's a shame that you and probably many others know exactly what I'm talking about when it comes to family believing that you're sick. Very sad.78 Well congratulations. The way I felt for the last 30 years I didn't think I'd make it to 50. I don't wait around for anybody to fix me. I have been trying to fix myself for decades. But doctors would send me down useless roads that led nowhere. Not until B12 deficiency was diagnosed 11 months ago, did I find a way to start treating myself. There's a lot of damage that's irreversible now but I think there's still a little bit more that can be done for me if I could get this thyroid under control.

Perhaps you should get your B12 tested to make sure that you are in good shape. Somebody asked me if my ferritin was good and it is. My blood work is really pretty darn good considering. But then again I thought my thyroid was okay too and it's not. The only thing I have a problem with is B12 D3 and my folate is high actually not low. And I have high MCV but they keep ignoring it. Even though it is flagged as high every time.

Will you might be frail but you sound tough and brave. And obviously never give up. I think people like us that come to this forum are the ones that are not afraid to treat themselves and are strong enough to not listen to doctors and believe what they say because we believe in ourselves and we know that we would never fake something like this. Then there's the other people who never even look to help themselves and they suffer. For all the ones that are here at the forum I wonder how many of us there are that never seek help for themselves. It's very sad. I have several friends with thyroid issues and I try to steer them here towards this forum and they just don't think it's serious. Can't help the ones that don't want to help themselves.

Have a nice evening. Good luck with your continued selfcare

greygoose profile image
greygoose in reply to EllaNore

I have had my B12 tested - it was low. What I meant was, I've never been tested for Pernicious Anemia. I supplement all the B vits. :)

EllaNore profile image
EllaNore in reply to greygoose

Oh, right. That would be the IFAB antibody test. You might consider that because if you have antibody parietal cells then you wouldn't make intrinsic factor and any vitamin b12 that you take orally wouldn't really have much effect for you. So if you're still feeling lousy you might have that IFAB test and maybe get a B12 injection once a month. It sure seems that a lot of people with thyroid issues have B12 issues. There was something in that article that I posted that mentioned that taking thyroid medicine can make it difficult to absorb B12. I don't know if that's true or not but they seem to go hand in hand so much.

tattybogle profile image
tattybogle

I realise you are in U.S , so GP's there may have different guidelines to follow, but NHS guidelines in UK mean GP's can't start to treat hypothyroidism until TSH is at least over the lab range on 2 separate occasions, 3 months apart (some GP's may shorten the '3 months' to 6-8 weeks if they are more sure treatment is going to be necessary)

(using a lab that had a different range shouldn't affect whether your result is over range or not , eg if you had tested at a lab using [0.4 - 4] your result for that blood test should have been something like 3.9 )

You have to look at TSH / fT4 'together' to get a proper idea of what's on.

fT4 at 20% would be perfectly alright for some people, the ones who usually had their fT4 at that level, but not alright not for others who usually had their fT4 at 75%.

The way to tell if your body thinks 20% is 'enough/usual for you' is to look at what the TSH is saying .

TSH over about 2.5/3 is a pretty big clue that your body thinks 20% T4 is not quite enough for you. ( it's not absolute proof because there are clearly some healthy people with TSH that is usually at 3/4/5.. but it is more common for healthy people to have TSH 1/2 )

When the T4 level falls lower than the body needs , the TSH (Thyroid Stimulating Hormone) rises to 'ask' the thyroid to produce more T4 (if it can)

When TSH rises from it's usual level, it not only asks the thyroid to make more T4 , it also asks it to increase the ratio of T3;T4 that it makes.. so in early hypothyroidism , you would usually expect the fT3 result to still look pretty decent ,as the body tries everything it can to maintain T3 levels for as long as it possibly can , especially when the fT4 is lower than usual. So don;t be surprised if your fT3 is still relatively good at this point.. T3 only goes lower once the thyroid is seriously struggling to keep up.

When TSH is still in range most GP will; be reluctant to start treatment. TSH can rise temporarily for many reasons so that is why they need two over range result with a gap in between ~ to rule out a 'one off' .

When TSH is only a little bit over range , and fT4 is still within range , most GP's would want further evidence before starting treatment .. eg the TSH slowly rising over a series of several tests, or the fT4 falling over a a series of tests ..and symptoms of hypothyroidism .

And... since the most common cause of hypothyroidism is autoimmune disease , a positive thyroid antibody test would give them more confidence to start treatment before TSH got to 10 (once it's 10 or over , then most guidelines will say to start treatment anyway even if there are no symptoms)

See image below ....10 healthy people .. some of whom have fT4 at 20% or even lower (no.3 and no.6) ...BUT note they both have TSH at the lower end of the range .. if their body wanted more fT4 than 20% , you would expect their TSH to have risen ,and it hasn't . So the fact that your TSH is very near the top of the reference range with a fT4 of 20% is the main indication that your thyroid may be struggling to make enough T4 for your needs. But you may have difficulty finding a GP willing to start treating it until it actually goes over range.

For the highest TSH of the day you want to :

~ get an early test @ 8/9 a,m. (TSH gradually falls until it's lowest point around 1-3pm ,then slowly rises again)

~ don't eat breakfast before you test. (eating breakfast can lower TSH by up to 30% in some people , but not much in others)

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EllaNore profile image
EllaNore in reply to tattybogle

Wow tattybogle!! Thank you so much for that very useful information. You explain that very well. Thank you so much. I see ranges as a sort of sliding scale. The middle should be green everything is good and it's a go, as something goes to the low side it should turn yellow as something goes to the high side it should turn red. the more yellow something is the worse it should be the more red something is the worse it should be. Anything within a few points of being high or low should start to slowly show symptoms. I can't believe that doctors think that you have absolutely no symptoms until you're over the high range or under the low range. Like miraculously nothing happens until boom you hit that high range or that low range. Of course people are going to feel shitty as their numbers go higher or lower and who's to say how bad somebody feels? Everybody's different. I have a lot of learning to do about this but your explanation was very good. And I'm going to study it so that I can understand it even better. Thank you very much because now I understand why they're not treating me for something that is just borderline high and borderline low.

tattybogle profile image
tattybogle in reply to EllaNore

The main points to understand are :

~ that our personal 'optimal' ranges of T4 /T3 and TSH are very personal to us ...

(unfortunately most of us have no idea what our personal 'optimal' fT4/fT3/ TSH levels looked like when we were healthy, so we have/ and GP's have to guestimate by looking at "95% population reference ranges" )

~ and that you need to look at TSH / fT4 as a set/ pair , and NOT in isolation.

EllaNore profile image
EllaNore in reply to tattybogle

Oh right. If we've all suffered from this for so long we don't have normal blood work to look at to compare. I see. Thank you very much. I'm soaking this all in. I really appreciate your information

arTistapple profile image
arTistapple

My original TSH was 2.4 with low T4. I had horrendous symptoms. I was not treated for another twenty years of ill health. I have no idea why my TSH was so low and yet terrible symptoms that every medic ignored. We are all different and I was too trusting. Your TSH says something is going on.

EllaNore profile image
EllaNore in reply to arTistapple

I'm very sorry that it took so long for them to figure out what was going on with you. I don't understand between people I know with thyroid issues who also have pernicious anemia or B12 deficiency we're all in this vicious cycle of them not knowing what it is I don't understand how something so simple they make so difficult. All you have to do is look at the numbers and the symptoms and connect the dots but doctors don't want to take the effort to educate themselves further on something they don't know much about. I hope everything's under control now. Thank you for sharing your story.

EllaNore profile image
EllaNore

I found this information that was helpful to me. It might be helpful to anybody else who's just starting to learn about this like I am.ncbi.nlm.nih.gov/books/NBK2....

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