Long story short, I am 25 and experiencing all underactive thyroid symptoms to an extreme, I also have an enlarged thyroid gland.
In 2015 my test results came back confirming hashimotos/underactive thyroid and I was given levothyroxine by my GP at home. After returning to university a GP there did another blood test and my bloods were fine - I was taken off the meds..
Fast forward to 2022, I am still experiencing all the symptoms, my thyroid is still enlarged and I know I'm not 100% right. We did the standard thyroid tests which came back fine, but my GP requested a further thyroid antibody test which came back same as 2015 and they confirmed Hashimotos again. All other results fine, but my iron levels do fall below average sometimes.
I am now having an ultrasound next week - what is this for? What else will it show? My gp refused to give me levothyroxine until after the ultrasound.
I'm also concerned that I've been off medication for all these years.. I had an ultrasound back in 2015 but they weren't concerned about it, just put me on meds and left me to it.
Any advice would be great as I'm slightly frustrated/confused.
Results:
2015:
TSH 4.74 (0.27-4.2)
T4 13.9 (12-22)
Thyroid antibody 93 (>75iU/mL)
2022:
TSH: 3mu/L (0.34-5.6)
T4 8.9 (7.7-15.1)
Thyroid Antibody 62kU/L (0-30)
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Flossie9
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I have Hashimoto's and a goitre half removed by thyrodectomy. But blood test didn't pick it up. Luckily my consultant's wife had Hashimoto's so he knew what it was and put me on T4 anyway, in 1996 and in 2008 managed to get myself put on T3 as well, after tearfullness, lethargy, weight gain, feeling cold and sluggish, brain fog, etc became too much.
Most people feel better with their TSH close to 1.
Have a look at this article - it is pretty comprehensive and might seem daunting, but if it is heavy going, put it to one side and return in a few days:
Your FT4 is near the bottom both times. And your antibody tests (I assume, Thyroid Peroxidase antibodies) are clearly positive.
It is important to get your iron levels into a good area. Low iron compounds thyroid issues.
It reads like they tested you while taking levothyroxine - found it was OK, so stopped your levothyroxine.
Which is a bit like, they checked your blood sugar, your urine, whatever else, while you were eating every day. So they told you to stop eating.
An ultrasound often only finds thyroid size and some evidence that you have, or do not have, damage from autoimmune issues. Occasionally they might notice something else, but not often.
That’s exactly what happened. I remember how scared I was at the time being told I have to take the medication for the rest of my life.. but I accepted it by that point, went for a blood check up 6 months later with my university doctors and suddenly got taken off the medication.
Do you think based on these blood tests I will be given levo again? I’m unsure why my GP said she can’t do anything until after the ultrasound.. she’s not been very supportive or open to any conversations until after the scan.
So frustrating as I’ve had chronic hives for 3/4 months which the doctor put down to an auto immune disease and when I mentioned thyroid issues they disregarded that as an answer. Yet now my antibodies came back positive she suddenly said that perhaps I was right!
I think, from where you are now, go with the ultrasound.
Ask at the appointment if the ultrasonographer can tell you anything, give you a print, whatever they can say. (They might not be allowed to - it does seems to vary.)
You can have hives due low thyroid hormone - regardless antibodies!
And get your iron results! Ferritin alone is insufficient. Have a good read here:
nice.org.uk/guidance/ng145 (NHS guidance)From NHS point of view , your current blood test results don't allow NHS GP to prescribe Levothyroxine yet , because the TSH is not over range at the moment (it was over range in 2015 which is why they were able to prescribe back then) ..... but they will retest your thyroid at intervals to keep an eye on it , due to your raised thyroid antibodies (assuming they are TPOab , they indicate autoimmune thyroid disease is present and mean there is possibility of ongoing thyroid damage which may eventually mean your thyroid can't make enough thyroid hormone)
in order to treat with levo , their guidelines say they need TWO over range TSH tests (to confirm the first was not temporary) taken 3 months apart .
TSH (Thyroid stimulating Hormone) is a message from the pituitary to the thyroid, asking it to make more (or less ) thyroid hormone (T4/T3) .
When the T4 goes low the TSH rises to ask the thyroid for more.
Most people have a TSH that sits under 2 , around 1 ish,... Yours is a bit higher than that , so it does suggest a problem , and your raised TPOab confirms a reason for the problem ( autoimmune damage)
.... ... but , unless/ until your TSH goes over range (or your fT4 goes under range) they won't consider the problem needs treating yet .
The outcome of the scan is unlikely to change the decision about prescribing Levo while TSH is in range.
Yes a goitre is certainly an indication of an issue ~ autoimmune thyroid disease/Hashimoto's often has a goitre ...... but they still won't/ can't prescribe replacement thyroid hormone until yours is too low (or your TSH is too high)
They do ultrasound for goitre because enlarged thyroid can cause 'structural' problems that have nothing to do with the level of thyroid hormones.
eg , pressing on other things/ growing downwards / backwards etc ,... and all thyroids , even healthy ones, can have nodules , and very occasionally nodules could be suspicious/ cancerous ... so an ultrsound is largely a precautionary measure when somebody has an enlarged thyroid,...just to make sure nothing is going on that might cause problems later. It can confirm size shape of thyroid gland and can see if any nodules are present , if there are, it can see if they are dodgy looking and warrant further investigation, or if they look safe . And it can sometimes 'see' the physical signs of autoimmune thyroid damage if it's been going on for long enough , or is bad enough.
So strange that the gp herself didn’t make me aware of any of this. I was fairly happy that I’d be put back on meds again. Can you help me understand the antibody result? It’s quite a bit above the highest recommended range, why would that be? And is there nothing I can do about it?
those are relatively mild levels of TPOab .. , over rage, yes ...so they do show evidence of past autoimmune attack on thyroid .. but they are not particularly high ... eg 500 would be seen as very significant, and TPOab results can sometimes be in the thousands . Below is a description of how they work , not 100% technically accurate , but simplified to give a basic idea of how autoimmune thyroid disease works:
Basically, the immune system (mistakenly) attacks a bit of thyroid tissue, and as a result some Thyroid Peroxidase (which should be inside the thyroid) , leaks out into the blood (where it should not be) ., then the thyroid peroxidase antibodies recognise it and fasten onto it like labels saying "please clean this thyroid peroxidase up , it shouldn't be here" .. and then some other part of the immune system comes along and cleans it up .
TPOab do not do the damage , the immune system does . The TPOab are there to label / help clean up the damage. GP's measure them as an indicator to see if autoimmune damage has happened previously , and is therefore likely to continue to happen .
Every body has 'a few' TPOab .. as part of their normal 'housekeeping' system , but when they are over range it means there has been more damage to clear up than you would expect from just normal 'wear and tear '
Opinions differ about whether there is anything you can effectively do that lowers your levels of antibodies ,and whether there is any point trying,...they do tend to lower over lots of years anyway, whatever you do.... possibly because as time goes on there is less healthy thyroid tissue left to attack .
But there is plenty to think about and try eg . Autoimmune protocol diets, etc ...... but nobody knows any answers for sure yet.
You can have/ read some lively discussions about it on the forum, and of course on the internet you will find lots and lots of people trying to sell you a book to "fix your Hashimoto's" ... so by all means look into it and try whatever you feel like , but tread carefully , and be realistic about just how much is not yet understood.
and remember , we know TPOab antibodies themselves don't do the attacking .
scan should be interesting... wish i could have one, would love to know if my thyroid was still the usual size or has shrunk ... but as i never had a goitre, i never got offered one .Fingers crossed you get a friendly one who tells you interesting stuff, apparently some do ,but some are very tight lipped .
Given your goitre and TPOab (and previous raised TSH, and symptoms if they match hypo) , then i suppose it is possible a very sympathetic GP might want to trial Levo anyway regardless of guidelines .... depending on how much they wanted to stick their neck out professionally .
Try suggesting that since your fT4 is so low in range , you would really like to try levo again to see if it improves symptoms and you wonder if it might even shrink your goitre a bit , ( they will probably say that's not thought to be true anymore.... but in my opinion it's worth a try ... a struggling thyroid would logically get bigger~ to try to make more T4 ... so it seems logical to me that giving T4 might mean it reduces in size a little again)
Yes I look forward to it to be honest, I don't remember my last one anymore so be interesting to see whats changed. I will see what my GP suggests afterwards, fingers crossed its medication as im going insane!
H as e to chip in as I’m confused.com. One thing that strikes me as weird. If Flossie was actually put on to medication then had another blood test six months later at Uni and taken off medication because she was ‘normal’ (god I hate that word). Isn’t that odd? Isn’t the whole purpose of the medication to get a person’s results into normal range. 🤔
I understand there are thyroid infections that create transient symptoms- I actually have a pal who was treated with steroids and avoided permanent damage but this isn’t the case here is it?
Possibly we see it most often, and most often repeated, with iron.
Someone is diagnosed iron deficient. Prescribed (or told to buy) some iron tablets. Some months later, iron is within the reference interval so the prescription/advice is cancelled.
Some time later, they are iron deficient again! So the merry-go-round is set in motion.
No thought whatsoever that, while a lower dose might be adequate for maintenance, none at all will inevitably result in this cycling.
If someone is iron deficient, the cause needs to be identified and treated/managed. For example, some vegetarian/vegan diets might need to be reconsidered.
Any merry-go-round also means that the person is suffering iron-deficiency much of the time - optimistically three months deficient followed bh three months replete. But the balance could be far worse.
(I switched to iron because it seems even clearer and more obvious. And possibly even more widespread than thyroid issues.)
Yep very bizarre that they decided to take me off..Of course my results were better 6 months later, the medication clearly did what it had to..and then the symptoms came back! Very annoyed as I've spent the last however many years feeling like crap.
Just thought to point out that time between taking levothyroxine and doing a blood test affects the result.
If, for example, you take levothyroxine in the morning (as usual) and then have a blood test a couple of hours later, any free T4 test will show a relatively high level. Two hours is approximately the time at which free T4 will peak from a tablet.
No-one can sensibly work out from a peak free T4 result what your level would be hours later. There is no formula that can be applied.
(If this happened, it was definitively NOT YOUR FAULT. It is that pretty much the whole establishment ignores this issue.)
That’s it though isn’t it? this is a replacement therapy so once your results were within normal ranges and presumably you were feeling better they should’ve monitored. It seems the doctor who took you off, might I dare say, doesn’t even know this is actually replacement therapy? Mine thought she was just ‘topping me up’ which is also wrong. They are out there! In droves. Finding one that has a clue is hard. Out of the 5 GPs I spoke to at my local surgery none, it turned out, knew as much as I did. I didn’t know much, as I had only started reading, but I knew the stuff that would close them down! Lol! I did find the last one had a clue though and when I explained my belief that one more dose increase would clear symptoms and how I had mapped the falling away of symptoms with dose increases he was sufficiently convinced to sign that prescription. Before I leave I will try to get a telecon with him and let him know. I think he was sufficiently open to actually have his interest spiked by my recovery.
yes it's theoretically possible that the (uni) doctor who discontinued levo didn't understand how treatment works at all .....but to be honest i think it's much more likely that they just didn't agree with the first (home) GP's prescribing Levo at the point they did . Not all GP's think 'subclinical' autoimmune hypo warrants treatment with levo at an early stage ..... eg . " it doesn't always get worse, and if it does, it might not be bad enough to need treatment for many decades , not everyone with TPOab has any symptoms ,and there is heaps of evidence suggesting that treating 'mild' subclinical hypo doesn't improve QOL, etc etc"
so , especially in a case like this, where the original TSH for diagnosis was only very slightly over range , it's easy to see why a different GP might not feel ok to to continue someone else's "borderline" prescription : 2015:
TSH 4.74 (0.27-4.2)
T4 13.9 (12-22)
Thyroid antibody 93 (>75iU/mL)
Also important to understanding what went on .... We don't know if the (home) GP had time to do a 2nd TSH to conform the first one before flossie went back to Uni .
..... If a confirmatory TSH wasn't found on the records , then Uni GP could quite legitimately have discontinued Levo to confirm (unmedicated) TSH was really over range and the 4.74 was not just a one-off.
Uni GP may simply have been intending to confirm unmedicated TSH and consider reinstating Levo at later date if they were satisfied with the validity of the diagnosis, but perhaps TSH just wasn't over range again in any later tests off levo ? i note its not over range now .
Hmmm re-reading the post, I’m still not convinced it was a justifiable reason to take Flossie off levo to see if it was needed. Having results within range is aimed for when on medication. I truly do not believe they knew what they were doing.
If a doctor does something like this they should be duty bound to follow up. The doctor didn’t- big flag that didn’t know what they were doing.
So Flossie has been left symptomatic for years and for me, that is yet another case of a GP taking someone off replacement therapy with reckless abandon. I really can’t be benevolent when this happens. I totally understand your explanation as to why they might do it, but it doesn’t quite fit in this instance I feel .😱
By my GPs assessment I was only slightly over range with regards TSH. However, FT4 was low and I had an abundance of symptoms. She at least realised I was in desperate need of thyroid hormone replacement even if she stuffed up thereafter🤣👍
TSH is such a poor indicator anyway. It is irrelevant indicator in some forms of hypothyroidism and at best the worst measure of thyroid function. If they just appreciated the uncertainty in using these tests for diagnosis this would be a start 🤔
to clarify .... i wasn't meaning i thought it was a reasonable course of action.. ( especially since there was a goitre already ) was just explaining that if Uni GP was from the "not a fan of treating subclinical thyroid results " school , they would probably have seen it this way and would have blamed any symptoms on 'something else' (being female ) .
This attitude is extremely common, it's what they've all been trained in .
GP's from this school would probably believe that any woman who dared to have autoimmune thyroid disease and some degree of central hypo at the same time so TSH not raised appropriately ...... is probably a witch .
Not sure what the NICE guidelines for treating Witches with Hypo are ??? probably say's "Run away , Run Far Away.... and ask your receptionist not to give her any appointments with you again"
🤣👍. Don’t worry tatty ❤️ I know you don’t think it’s reasonable, but the message was being a little lost in explaining their possible thought processes. Funnily enough, We were talking about dunking stools today. I would definitely have been a candidate 😂🤣😂🤣.
I have my ultrasound this afternoon at 2pm as its been brought forward - I will come back with the results of that after as I'm sure you guys will have more understanding of it. GP said they will call once they have results to come up with a plan. I really looked forward to this hoping I'd finally get medication again and put an end to living my life like a sloth at the age of 25! But a couple replies here worried me so I hope I don't end up with disappointing news..
ps Flossie9 .... i forgot to mention... do you know that TSH has a circadian rhythm ??is at it's highest in the middle of the night / very early morning..... and falls gradually to it's lowest between about 1-3pm....than gradually rises again. The difference may not be massive , but if you are borderline , it could be enough to make the difference between in range / out of range .. ( levo / no levo)
Test @ 9am (or even earlier) to get your highest TSH result (which really matters if you are trying to get a diagnosis /prescription .
If they offer you a TSH blood test at eg 1 pm , then say "it's not convenient i've got to be somewhere else sorry" .....and leave.
Don't accept Thyroid blood test appointments later in the day..... it's worth waiting several weeks if need be for an early one . NHS Receptionists/GP's won't accept TSH needs to be a 9 am test , so don't waste your breath arguing .... just say you can't make any appts after 9am due to work or something.
What time of day was your latest TSH of 3 ish taken ?? ..... if afternoon , it would almost certainly have been higher than 3 if taken @9am ... whether it would have been high enough to be over range is not possible to say ..... in some people the difference between high and low point can be as much as 50% , but in others the difference is negligible.
ok.. so when discussing scan findings with GP.... say you are aware of TSH circadian rhythm and why it would be lower in the afternoon, so you would appreciate a repeat test earlier in the day. GP may have to wait a few weeks from last one before ordering a new one for lab to allow the repeat as they have restrictions on repeat TSH testing when last one was 'normal'( don't eat breakfast/ caffiene before the next test, wait till after .. this may or may not make much difference .... but every little helps)
There are lots of instances where a TSH can be in range yet the person is still hypo. There are books out there to give you a grounding in your condition, I hear on here frequently about DR Peatfield’s book on the thyroid and the one I read was Be your own thyroid advocate.
TSH is the least reliable measure of thyroid health/function the ACTUAL thyroid hormones T3 and T4 in their free forms are a better measure. Sadly flawed science drives the current treatment regimes. There is latitude written into the guidelines, but doctors rarely step outside these as they are not confident within the guidelines, let alone going off-piste!
There are people on here with less common forms if hypothyroidism secondary, tertiary cellular resistance and having Hashimoto’s does not preclude you to having other confounding issues, but with your symptoms and low T4 that should warrant more consideration. Seriously you need to get reading. 😊👍
So I had my ultrasound. The lady there confirmed the thyroid was very much enlarged and that it wasn't smooth. She had my old and current blood results and said she doesn't think I should've been taken off the levo.
She also advised that I definitely have got an underactive thyroid which should be treated and she was typing up a report to my GP.
Hopefully GP will contact me next week with further info..
I’m glad the lady who did your ultrasound was open. Your suspicions have been confirmed. Make sure GP doesn’t leave you on a starter dose. Read my profile (click on my face). I explained how I got onto a full replacement dose. Please start that reading and don’t be bullied. 😘👍
Come back to the forum with anything that bothers you .
You are not being pushy at all. It’s called proactive. 😊👍 I’ve read heart aching accounts on here where people have played the deferential patient waiting for the GP to ‘WAKE UP’, people who’s health has been damaged by patiently being patient. The longer things are left the more likely complications can set in. You are in a position to be proactive. Read lived experience on here as often as you can it will build a picture for you as to the Rocky landscape thyroid treatment. You are young and need to get command of this lifelong condition. It was the lived experience of others that spurred me on and I’m sure my health has been preserved as a result and I have had a better outcome than I expected.
Your antibodies are high which means autoimmune thyroid disease, this is what I have, normal TPO levels should be between 4-9. My GP has some functional medicine background so he did many more tests for food sensitivity as well as SIBO (small intestine bacterial overgrowth), which I tested positive for, so he put me on a gluten free, dairy free, sugar free diet before adding any thyroid hormone. I started with the whole 30 diet and after a month started adding one food every 3 days to test which foods I must eliminate permanently. By the end of three months my TPO had gone down from 609 to 126. He eventually added liothyronine 5mcg. My TPO barely went down too 111 but my t3 was 4.5 and I’m experiencing a lot of fatigue and joint pain so he increased my meds to 10mcg. Still, I’m thankful to have brought down my TPO from 609 to 111…I hope this helps
the reference range that came with flossies latest TPOab test was 0-30 , so on that test anything under 30 is 'normal' and anything over 30 is positive.
I live in the US, normal levels here are between 4-9, unfortunately most doctors here don’t even bother to test TPO, you have to find a functional medicine doctor if you want to get tested properly
Every test you have ever seen might have had the same range. But it is not universal.
Also, I'm not clear why a result between zero and 4 would be a problem? Most of the time, antibodies tests simply set a level above which they are regarded as positive. Sometimes, they suggest a band in which the result is considered questionable.
You put 4-9. Which meant that at the bottom of the range there was large gap between 0 and 4 (almost half the possible range) which was regarded as out of range.
Now you have shown it was 0.3 at the bottom, that is almost zero,. And some labs do exclude a very small bit at the bottom of the range. What they mean is in that area they cannot be sure of the accuracy result. If your test came back in the lab as 0.2, for example, they'd probably report it as < 0.3 (less than 0.3). Regardless, it would be a definite negative.
Also, that you said it as if that range were standard across the USA. But, just like the rest of the world, the ranges vary by laboratory. (Or group of laboratories.)
When something is wrong, we correct it primarily to prevent others picking up something that isn't quite right. I'm sure you intended to be helpful and informative. And people can and do point out my mistakes. Long may they continue to do so!
many blood tests are not standardised....even within the same country, for some kinds of test you will see several different reference ranges. .... Where it say's 'Standard Range' on your picture , it means 'this is the reference range for tests done on this machine/ method ' .. not 'this is the standard range for ALL TPOab tests' .
The use of the word 'standard' here is a bit misleading.
Test platforms(machines) made by different manufacturers use slightly different test methods and so they each need their own reference range that works with that method .
So blood test results must always be interpreted using the lab range that comes with the result . We can't take ranges from one method and apply them to results from another method. The test you have there was done with a method that uses the range ( 0.3-9) .... so for that test method 'less than 9 ' is negative , and more than 9 is positive .... but you can't transfer that range to another test result that was done with a method that uses a different range.
For example :
If you'd had your TPOab test done using a different method that used a range of (0-30) then your test result would still have been 'positive' , but the 'number' you got for the result would have been quite different .
The same issue applies to eg fT4 tests ..in UK we have several different testing methods/ machines in use for fT4 testing .. some have a range of (7-14 ).. and some have a range of (12-22) and there are several others in use .
The SAME blood sample tested on different test machines might give results of :
7.0 (7-14)
12.0 (12-22)
Both results say the level of fT4 is right at the bottom of the "95% population reference range" , ie 'low normal'...... so they are both the same result .
But we cant take the resulting number of '7.0 ' from the first test and use the (12 -22) range from the second test to interpret it , or we would get an incorrect interpretation ..... it would make it look as though the amount of fT4 contained in the blood sample was 'below range' , when its actually 'low normal'
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