My feed
Premium

Please
or
to access all these features

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Autoimmune disease

Confused by thyroid results

28 replies

Thyroidy · 25/03/2023 11:09

I'm hoping someone might be able to help me understand my latest thyroid results. For a bit of context I have a family history of hypothyroidism and a close relative died following an adrenal crisis in their 30s. I'm a parent carer and high stress is a daily norm. I've gained weight but lost some after a lot of extra stress the end of last year. My hair is falling out and I feel crappy but I barely sleep because of my child's care needs and I have to carry them a lot so it's hard to pick out what causes what. I take elvanse daily and folate as this was low but no other medication.

I had a goiter appear a couple of years ago but this was in lockdown so it took a long time to get checked out. My bloods were normal initially and a scan confirmed a thyroid goiter. Next lot of bloods were showing subclinical hypothyroidism and I was referred to endocrinology. Bloods after this were normal again. Then they forgot about me for nearly a year (and tbf I also forgot about them!). Latest bloods which by the time of my appointment were over a month old showed elevated tsh (7.3), elevated t4 (14.7) ,elevated t3 & antibodies (i wasn't told the figures on these) and low folate (despite having supplements for 6 months). Endocrinology only over phone appointments and there's a lot of crackle and interference during their calls. I find it hard to follow and ask questions during this appointments. I don't understand what all of these results mean? How can I be high on everything? I'm being referred for another scan on my neck and some bloods to check my adrenal function. I was told I'd likely be started on levothyroxin. But wouldn't high everything be something else? I can't find anything about high levels of everything. Only things saying test interference. I'm so confused!

OP posts:
CrunchyCarrot · 04/04/2023 21:59

Yes your TSH is high at 7.3, that's well over range. However I think your FT4 and FT3 are likely to be LOW in range, not high. Do you have the ranges? The normal FT4 range I know is about 12-22, so at 14.7 it is too low. If you can get hold of the ranges I'm sure plenty of us with hypothyroidism can explain what's going on.

gotmychristmasmiracle · 04/04/2023 22:15

Wow your lucky to get all those tests done, tsh is on the high end but they wouldn't treat mine at 8tsh, after I had a baby my tsh shot up to 52, now being treated on levo. Defo google reference ranges for thyroid and sisal to your endi/gp about symptoms and that you would like to ho on a trial , good look, no fun these hormones Xx

Thyroidy · 05/04/2023 20:43

Thank you for the replies. My clinic letter finally came through. It doesn't have the ranges used but does have the readings. It says:

"I spoke with this pleasant lady who is under us for subclinical hypothyroidism.

Bloods Feb 2023:

TSH raised at 7.3
T4 normal at 14.7
T3 raised at 7.2
TPO antibodies positive at 196

Previous bloods April 2022:

TSH 6.57
T4 13.4
T3 5.4
TPO antibodies positive

Given symptoms and blood tests we will investigate for a hyperthyroidism picture and review"

I really didn't understand what I was being told! I assume I was being told how they treat hypothyroidism but thought that was the plan for me. I still don't understand my results but hopefully my next lot of bloods will make more sense of things! Is it normal to go from subclinical hypothyroidism to hyperthyroidism? P.s. Is pleasant NHS code for "bit of a bumbling idiot" or something ๐Ÿ‘€ ๐Ÿ™ˆ I blame whatever is going on with my thyroid for my complete lack of cognition!

OP posts:
Moonshine5 · 05/04/2023 20:49

The website: healthunlocked will guide you and offer expert advice

gotmychristmasmiracle · 05/04/2023 20:54

Are you on levothyroxine medication? If not they may put you on a trial to see if it helps your symptoms although I had to wait until mine went crazy high until they would medicate. Best to speak with Endo or gp

CrunchyCarrot · 05/04/2023 21:56

That's a very odd result. I am surprised your TSH would be so raised with such a high FT3! Also your FT4 is very low. Normally in hyperthyroidism this would be over range and your TSH would be 'suppressed' or 0.xx. So your results don't really make sense and I'd want them repeated. Also, if they suspect hyperthyroidism then you should have TRaB checked (another set of antibodies against the thyroid receptor that can indicate Graves' disease).

Can you go from hypo to hyper? Yes, but it's not common. But your results are odd so more investigations are required.

hotfairballoon · 05/04/2023 22:14

Hey ๐Ÿ‘‹๐Ÿป fellow hypothyroid autoimmune sufferer here.

It's great they are investigating. Hopefully they will get to the bottom of it. I will say a couple of things though...it is possible to have autoimmune diseases graves (hypER) and hashimotos (HYPO) at the same time. I have antibodies for both. You can also have something called a 'hashi swing' which is where your thyroid becomes damage and starts dumping large amounts of T3 into your blood resulting in temporary hyper results. Your results are a bit confusing as T4 is low, but T3 high. You'd usually see both high. HealthUnlocked thyroid group is fantastic for info, although they are often unwilling to give advice unless you are willing to give detailed blood test results and ranges plus confirmation you have been gluten free for 6 months! Worth asking the question though, so many knowledgeable folk there

Thyroidy · 06/04/2023 13:06

Thank you! That's really helpful. I feel like crap whatever the cause is.

Is gluten free helpful? I'm not intolerant as far as I know but if it makes a difference I might try that.

How do you get the ranges? Do you have to request this specifically if its not included in your clinic letters?

Sorry for all the questions!

OP posts:
CrunchyCarrot · 06/04/2023 15:32

Is gluten free helpful? I'm not intolerant as far as I know but if it makes a difference I might try that.

Be aware that going gluten free will mean you end up missing out on some foods. It may not be necessary. I went back to gluten (and dairy) after 3 years without and no appreciable change to either thyroid or antibodies. I did find however that I am wheat and oat intolerant, even allergic, because they give me a number of reactions any time I eat them. That can't be gluten as it occurs after gluten free oats! So I do avoid wheat and oats if possible.

How do you get the ranges? Do you have to request this specifically if its not included in your clinic letters?

You are entitled to get a printout of results for free after getting test results. Ask the receptionist for that. Ranges for some of these are pretty standard so that's why some of us who are familiar with them are commenting that your results are low or above range. However, always worth checking as sometimes these things do change.

Thyroidy · 06/04/2023 19:48

Oh god, getting these was a faff! GP receptionist wrote these down for me in the end as she wouldn't print off my results and I didn't have the energy to argue with her.

I'm not sure how different these are between different locations but this would mean my T4 isn't low and T3 only slighty outside of range. Whether that makes any more sense of things I don't know ๐Ÿ™ˆ

TSH - 0.27 - 4.2 mU/L
T4 - 9 -26 pmol/L
T3 - 2.8 - 7.1 pmol/L
TPO - <34 IU/mL

OP posts:
CrunchyCarrot · 06/04/2023 21:42

They're obliged to give you printouts by law. Honestly!

Yes they are different ranges (apart from TSH) from what I usually see. So, OK T4 isn't quite as low as I thought, but still not great - it's only barely 30% of the way through the interval, and really it should be 70-75%. T3, just topping the range.

TPO Abs showing as below the threshold. However, you also need TG (thyroglobulin) antibodies tested too. Sometimes they are raised. If they are (or TPO are) then you have autoimmunity.

I still think there is something not right with the results. I'd be most suspicious of the FT3 value. It is highly unlikely both TSH and FT4 are wrong! I honestly think you should get them re-tested via Medichecks or somewhere similar that includes the antibodies. That's what I'd do, anyway.

CrunchyCarrot · 10/04/2023 07:12

Hey @Thyroidy - I have just visited HealthUnlocked and found an explanation that would seem to fit your circumstances: The poster was replying to someone who had only TSH and FT4 results (high TSH, low FT4), not FT3:

Your high TSH is most likely a sign that your pituitary gland senses low thyroid hormones in the serum and is trying to encourage your thyroid to produce more... by signalling high TSH to stimulate production. It does this to enable you to keep functioning...it will keep ramping up T3 production for as long as it can. This is refered to as " feedforward".

In time, if production drops to around 10% the thyroid will fail.

Increasing levo dose would halt this.

If you measured FT3 you will likely find it is high compared to your miserably low FT4. (In your case, you have exactly that situation).

It's important to stress this is HYPOthyroidism and not HYPER.

Thyroidy · 12/04/2023 22:17

Thanks @CrunchyCarrot that makes a lot of sense. Getting my repeat bloods done tomorrow so hopefully they'll be a bit more stable.

The blood test form is hard to read but doesn't look like they're testing for the additional things.

Confused by thyroid results
OP posts:
CrunchyCarrot · 12/04/2023 23:36

That looks promising, @Thyroidy - I can see they have TSH antibodies there, too (would be for Graves' - the autoimmune hyperthyroiditis disease) in addition to TPO Abs.

Good luck with those results!

duende · 29/04/2023 16:06

gotmychristmasmiracle · 05/04/2023 20:54

Are you on levothyroxine medication? If not they may put you on a trial to see if it helps your symptoms although I had to wait until mine went crazy high until they would medicate. Best to speak with Endo or gp

Are you in the UK? I lived in the UK for 16 years and found it hard to find GPs who understood thyroid health well.

In Poland all thyroid conditions are under endo care.

Anyway, TSH of 7 or 8 is very high and one could feel very unwell. Lack of treatment is negligence.

Most thyroid specialists agree TSH should be closer to 2.

Thyroidy · 06/05/2023 13:20

I finally got everything back. I'm under the endocrinologist as I'm classed as high risk with family history and my goitre. The consultant said my results are normal this time - I was a bit confused by what she meant as she was saying normal but then subclinical. I kept having to ask if she actually meant normal and if I could have the figures. I really don't understand why they're so secretive about results? Is this the same everywhere? They put them in the clinic letters but are so iffy with giving the figures at appointments.

I couldn't make sense of why my levels went from being all over the place to normal and was told it was probably stress. They're sending me for another ultrasound on my thyroid and said with my current levels I don't need medication (apart from folate supplements as that was low). I have started taking some supplements and trying to keep my diet a bit more consistent so hopefully that will help things.

TSH - 5.81
T4 - 11.9
T3 - 5.9
TPO antibodies greater than 1300
Folate - 2.4
Vitamin D - 54
Vitamin B12 - 369

So still confused but hopefully it was just a blip!

OP posts:
Orangebadger · 06/05/2023 13:42

Interesting results! I have hashimotos and I'm a HCP. Generally you only has positive TPO antibodies with hashimotos. Your TSH been higher than ideal but your T4 and T3 been ok usually means subclinical hypothyroidism which normally develops to full blown hypothyroidism. Some endos prescribe levothyroxine for sub clinical, some don't. But tbh if you are still having symptoms with no improvement with folate I would push for starting on levothyroxine.

In reality the parameters they use are very generic and we are all different. I feel very hyper thyroid with what are clinically normal levels so I reduce my dose, I also feel very hypo at what are normal levels. Through trial and error I know what I need. But it's certainly not as black and white as your blood results been within range as we all have are different normal levels. So you should be treated based on symptoms given your family history, goitre and previous results.

SBAM · 06/05/2023 13:48

I went to my GP as I was concerned I was hypothyroid (family history of Hashimotos). GP agreed to tests for ym
peace of mind. My results came back hyperthyroid, then by the time I saw the endocrinologist I was on the low end of normal. I asked for a trial of levothyroxine and now take a low dose, but I have been struggling to find a GP who will do more than test TSH, declare it normal and send me on my way, despite fatigue, hair loss, always being cold.

Orangebadger · 06/05/2023 13:59

SBAM · 06/05/2023 13:48

I went to my GP as I was concerned I was hypothyroid (family history of Hashimotos). GP agreed to tests for ym
peace of mind. My results came back hyperthyroid, then by the time I saw the endocrinologist I was on the low end of normal. I asked for a trial of levothyroxine and now take a low dose, but I have been struggling to find a GP who will do more than test TSH, declare it normal and send me on my way, despite fatigue, hair loss, always being cold.

Unfortunately this is very common. Drs need to treat symptoms first and foremost

CrunchyCarrot · 10/05/2023 14:44

TSH of 5.81 isn't normal! It's over range. By quite a lot. TSH should be around 1.0-1.5.

Your TPO antibodies are extremely high! You have Hashimoto's. This isn't a 'blip' OP, this is autoimmunity. The antibodies are destroying your thyroid and your results will continue to go downhill. Doctors are notorious for not picking up on this quickly enough. It's not stress that's making your results go all over the place. They can go up and down whilst the destructive process is taking place. You have a family history of Hashi's - it's hereditary. You will need thyroid hormone replacement if you are to have any chance of feeling well.

Your Vit D is too low, you'll need to supplement to push that up.

Thyroidy · 10/05/2023 18:04

@CrunchyCarrot honestly the "normal" was making me twitch! I've got another blood form through so I should have another clinic appointment after that. I'll ask directly next time what the reasons for not medicating are. Not feeling much different with the prescribed folate so far but early days. Will add vitamin d in as well and see if that helps. Years ago I was low on vitamin d and had it prescribed at high doses for 3 months and it was like night and day once my levels were back to normal!

OP posts:
CrunchyCarrot · 10/05/2023 18:40

Thyroidy · 10/05/2023 18:04

@CrunchyCarrot honestly the "normal" was making me twitch! I've got another blood form through so I should have another clinic appointment after that. I'll ask directly next time what the reasons for not medicating are. Not feeling much different with the prescribed folate so far but early days. Will add vitamin d in as well and see if that helps. Years ago I was low on vitamin d and had it prescribed at high doses for 3 months and it was like night and day once my levels were back to normal!

I can imagine how that conversation might go. 'Your results are normal, that's why you're not being medicated! What? You are listening to people on forums that think they know better? Please! You are fine. Oh, you say you don't feel well? Then it's not your thyroid, we can rule that out. Antibodies? Oh they are just there, not much we can do about them. How about an anti-depressant? I can prescribe those..." starts typing...

Pythonesque · 10/05/2023 19:02

It's a tricky one, there are real risks from being on too much thyroxine (eg osteoporosis), so starting treatment "early" for someone who looks like they are on the way to becoming hypothyroid from Hashimotos isn't automatically the best thing.

I had a documented episode of hashi thyrotoxicosis about 25 years ago, was monitored closely as they initially thought I'd end up hypothyroid and stay that way. Actually my TFTs normalised and i've just had them monitored regularly ever since (way overdue for another check though). I'm also on a gluten-free diet and wonder if that has helped slow progression? Though I was already gluten-free when it first "flared".

Orangebadger · 10/05/2023 21:30

Pythonesque · 10/05/2023 19:02

It's a tricky one, there are real risks from being on too much thyroxine (eg osteoporosis), so starting treatment "early" for someone who looks like they are on the way to becoming hypothyroid from Hashimotos isn't automatically the best thing.

I had a documented episode of hashi thyrotoxicosis about 25 years ago, was monitored closely as they initially thought I'd end up hypothyroid and stay that way. Actually my TFTs normalised and i've just had them monitored regularly ever since (way overdue for another check though). I'm also on a gluten-free diet and wonder if that has helped slow progression? Though I was already gluten-free when it first "flared".

Yes it's tricky but I should depend on symptoms as one persons hypo is another's normal, they are just average ranges based on the general population.

If Vit D doesn't help and folate doesn't seem to be and there are no other causes for your symptoms I would discuss a small dose of levo. You would soon know if you were been over treated and hyper... insomnia, palpitations, restless etc. basically the total opposite of that hypo walking through treacle and head in a cloud of fog!

AlphabetSue · 10/05/2023 21:54

CrunchyCarrot · 06/04/2023 15:32

Is gluten free helpful? I'm not intolerant as far as I know but if it makes a difference I might try that.

Be aware that going gluten free will mean you end up missing out on some foods. It may not be necessary. I went back to gluten (and dairy) after 3 years without and no appreciable change to either thyroid or antibodies. I did find however that I am wheat and oat intolerant, even allergic, because they give me a number of reactions any time I eat them. That can't be gluten as it occurs after gluten free oats! So I do avoid wheat and oats if possible.

How do you get the ranges? Do you have to request this specifically if its not included in your clinic letters?

You are entitled to get a printout of results for free after getting test results. Ask the receptionist for that. Ranges for some of these are pretty standard so that's why some of us who are familiar with them are commenting that your results are low or above range. However, always worth checking as sometimes these things do change.

You probably already know but just in case, out of interest, thereโ€™s a theory oats can have a similar effect, even when uncontaminated actual gluten.

Even though oats are naturally gluten-free, a small portion of people with celiac disease still react to them. Some research suggests that a protein in oats called avenin can trigger a similar response to gluten, though it is thought to be a separate sensitivity.

https://www.beyondceliac.org/gluten-free-diet/is-it-gluten-free/oats/#:~:text=Even%20though%20oats%20are%20naturally,to%20be%20a%20separate%20sensitivity.

Are Oats Gluten-Free? | BeyondCeliac.org

Yes, technically, pure, uncontaminated oats are gluten-free. However, there's a substantial risk of cross-contact due to how oats are ...

https://www.beyondceliac.org/gluten-free-diet/is-it-gluten-free/oats/#:~:text=Even%20though%20oats%20are%20naturally,to%20be%20a%20separate%20sensitivity.

Please create an account

To comment on this thread you need to create a Mumsnet account.