Hello, just asking for your opinion on whether I should start treatment or not for sub clinical hypothyroidism after subacute thyroiditis. I'm now it seems in the hypothyroid phase of this horrible illness ( subacute thyroiditis is like the gift that keeps on giving!) after becoming ill in October with thyroidtoxicosis.
My last two TSH tests results have been -
6.9 and 7.3 (0.30 - 4.40) taken six weeks apart
And my free T4
9 ( 8.9 -17.3)
My consultant at my first set of results took the watch and wait approach but as there has been not much change decided to now treat with levothyroxaine .25mg
He did say I'd probably have to stay on it for good now due to being TPO positive -
38 ( <6)
I believe hypothyroidism from subacute thyroiditis is transient so I'm just wondering whether to hold off and see if eventually go back to normal. My symptoms at the moment are mainly tiredness , brain fog and extremely heavy periods. Has anyone ever had similar and eventually gone back to normal?
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Julietilly22
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This sounds like a good idea. I definitely think I may have become anaemic due to the 3 heavy periods I've had since the hypothyroid phase of this illness. I'll pay private if my GP won't do it.
Reading your previous posts you also had a short period of being hyperthyroid. That coupled with positive antibodies points to Hashimoto's.
What doctors call normal - being within the 'normal' range, and what patients call normal and can function well at are two different things.
Once your thyroid function has declined to a point that your TSH is above reference range on 2 separate tests a few months apart then there's really no going back unfortunately.
Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
Thank you for your reply. If you look at the bottom of the comments on my last post I put an update on there about my diagnosis. The endocrinologist said it was classic SAT. I was told the postive TPO was a separate issue. I just was wondering if I should wait as hypothyroidism from SAT is meant to be transient but can take up to 2 years in some cases to resolve I believe.
My weakness is bread but I definitely feel better when I reduce my gluten and have less joint pain. I don't have a lot of dairy if I can help. I think I'll try to go full GF free again and see how that helps
He did say I'd probably have to stay on it for good now due to being TPO positive -
So there may be 2 things going on or it could have been Hashi's all along. There are 2 types of antibodies and the NHS only test one type, TPO. You may have higher levels of Thyroglobulin antibodies even. Bottom line is you have Hashimoto's disease which is autoimmune and once the damage has been done to your thyroid is not repairable.
Many people struggle for years to get a diagnosis and begin treatment, at the end of the day it's your choice if you want to accept treatment now or not. How long are you happy to put up with being unwell with no guarantee if improving?
I was tested for the other antibodies and was negative. Yes I know, it's probably inevitable but just thought I'd ask and see how others with SAT progressed incase remission was just around the corner.
Can I ask why you were diagnosed as having subacute thyroiditis? My understanding is that this is a transient condition of hyper and then hypo, ending with resolution back to normal which can be triggered by an infection ( and maybe other things?) Did they check inflammatory markers or other indicators of an acute thyroiditis such as radio-isotope scan or ultrasound and, if so, then what were they?
If you have high TPO antibodies then you have autoimmune hypothyroidism/ Hashimotos and the hypothyroidism is more likely to be permanent, although a minority of people with sub clinical thyroiditis can be unlucky. In Hashimotos you can also get hyper flowed by hypo so it can be difficult to be sure.
I sympathise, having recently been through a similar period. It is not nice! Good luck.
Thanks for your reply. It was diagnosed by a consultant endocrinologist as classic subacute thyroiditis. If you read on my post from 4 months ago I put an update on my diagnosis there at the end of the comments. The consultant believes that the antibodies are a separate issue and that at my level it would be a risk for the future. I believe with SAT you eventually return back to normal ( although not all) but it can sometimes take up to 18 months. I'm just debating whether to start treatment or wait so wondering if anyone else with SAT returned by to normal and how long it took.
Thanks, I have now read your previous post and see that you had classical symptoms with a scan and raised inflammatory markers so it seems almost definitely subacute thyroiditis. The hope would be that your thyroid function returns to normal quickly. How do you feel?
There is no reason why you could not have subacute thyroiditis as well as early Hashimotos. I think I have almost the reverse…… long standing Hashis with a recent attack of subacute thyroiditis due to an infection in January. I currently have tachycardia and symptoms of over treatment but my bloods are stable. I have reduced my medication because of the tachycardia and I think all you can do is see how you feel. If you feel OK maybe I would stay off the levo for a few weeks and see what happens.
Hope you are ok? Sub acute thyroiditis is just the worst! I've have never felt so ill as when I was in the early phase and I can't believe it's still affecting me nearly 6 months later! Yes I'm on two minds waiting but I am very tired and my periods have become so heavy that I think I'm on my way to being anemic. It's only when he said that once I'd begin levo it would be difficult to come off that confused me as I believe some stay on it for a short course only during the hypo phase of SAT.
cwbsi’s experience is really reassuring…. I totally understand your dilemma! I would go by what you feel and be reassured that you can stop the levo when you want to. Yes, it is horrible, especially when it is not recognised! Luckily (?!?) I don’t have much thyroid tissue left so have been nowhere near as I’ll as you I hope you feel better soon
I had subacute thyroiditis. Was put on levo with TSH of 65. Stayed on levo for 8 months. Then discontinued within 2 months. Has been normal for almost 2 years since then
That's is a high TSH and can understand why they treated. It's way more than my level( or did you mean 6.5? ) That's encouraging to hear. The consultant told me once I start I'd probably have to stay on for life which is why he waited initially to treat. I'd be less apprehensive about if it was just a short course because I'm wondering why I have to permanently stay on it if the hypo stage is transient and I'm subclinical. He mentioned my positive TPO but the time before that he told me that it put me at risk of a future autoimmune hyperthyroidism separate to SAT but he felt that at my level it was likely in 10 to 15 years time.
The consultant told me once I start I'd probably have to stay on for life which is why he waited initially to treat.
This 'consultant' knows very little about thyroid. You won't have to stay on thyroid hormone replacement for life just because you started on it. That's not how it works. You have to stay on it because you cannot live without thyroid hormones. To have a TSH as high as yours - even if it's not as high as some other people's TSH - means that your thyroid has now been damaged to the point of no return. It can no-longer make enough hormone to keep you well.
I have no idea what he means by the antibodies are a separate issue. What does he think is causing your hypothyroidism, then? And, calling it 'sub-acute' is just medical lingo for 'I don't want to put you on levo unless I absolutely have to because I don't like treating thyroid'! When you take into consideration that a euthyroid TSH is around 1 and never over 2, yours is pretty high. Really not much 'sub' about that. And your FT4 is very low, despite the high TSH, because the thyroid is just no-longer capable of responding.
So, as I was saying, should he start someone on levo when they don't need it, it wouldn't be that hard for them to come off it. If they did, the thyroid would eventually go back to making as much hormone as it did before starting the levo. It doesn't just shut down because you start thyroid hormone replacement - not if it's healthy, it doesn't. And, I do speak from experience, here. I once stopped mine for six monthe - for reasons I won't go into here, but see my profile - and my poor thyroid, which had been pronounced dead some years before, made a huge effort and started producing what hormone it could. My TSH was 40 something, but I was alive.
I have Ord's, which is Hashi's without the goitre. And, I know that, as the thyroid slowly dies, causing temporary 'hyper' phases as it goes along, can sometimes go into a sort of remission, where you can be euthyroid for varying lengths of time. And, that's when lots of people think they're 'cured'. But, they aren't. Sooner or later, they will sink back into hypothyroidism again, as more and more of the thyroid is destroyed. Regardeless of a 'diagnosis' of sub-acute thyroiditis or any other sort of diagnosis.
So, the sooner you start on thyroid hormone replacement, the better, because it will avoid all the other horrors that go with living without sufficient thyroid hormone, like heart conditions and liver faillure, etc. Keep your other organs healthy by giving them the hormone they so badly need, that's my advice.
I was diagnosed with subacute thyroiditis which is triggered by a virus and is meant to be self limiting. With this type of thyroiditis you go through 3 phases- hyper then hypo ( but not always) and then back to normal. It's not autoimmune in nature. I was positive for antibodies but was told that it was a separate issue to the viral thyroiditis and would put me at risk of becoming autoimmune hypothyroid in the future. At the moment they believe the hypothyroidism I have has been caused the the viral thyroiditis which is the last phase of the illness. They don't always treat this as you spontaneously return euthroid at some point which is why I asked if anyone else had experience and how long it took to get back to normal. I'm being called sub clinical as my levels are not over 10 and my T4 is just within normal.
OK, my apologies, I was confusing sub-clinical with sub-acute. But, even so, you could have both at the same time. And assuming that the antibodies mean a possible problem in the future is totally wrong. If you have high antibodies, you have Hashi's now, and it's just going to get worse.
Actually, I think the NICE guidelines state that if you have two consecutive TSH results over-range - never mind 10 - plus low T4, plus high antibodies, you should be treated straight away.
A euthyroid T4 would be about mid-range. So yours is low and suggesting hypothyroidism.
38 high for TPO antibodies? I thought most with autoimmune conditions have them in the 100's plus?
If it's over-range, then it's high. What is the range? My TPO antibodies were only just over-range, but my Tg antibodies were in the 1000s. Have you had those tested? Antibodies continually fluctuate. A blood test is just a snap-shot in time. But, if you didn't have Hashi's, they would be a lot lower than that.
You can't compare other people's restults with yours. We're all different. Not everybody with Hashi's will have antibodies 100+. Some never have over-range antibodies at all and are diagnosed by ultrasound.
Ahhhhhhh! De Quervain's thyroiditis. I didn't know they were the same thing. But, even so, with the high antibodies, the endo should have understood that it was Hashi's.
no, I meant “65”. The weird thing is that with TSH at 65 I felt better than ever. It felt like going back to my early 40s (I was 54 at the time of diagnosis). Subacute thyroiditis recovery statistically dependent on the TSH once you went hypo. With your numbers the odds of full recovery are around 90%
That is weird. I'm not sure what my tsh was when it transitioned but I was 0.01 in early December and then 6.9 in Feb and 7.3 from last week. I had loads of energy when I was hyperthyroid but definitely feel the opposite now. Are you positive for antibodies?
yes, I started with the same TSH - 0.01. The only symptom I had was faster than usual hear rate. That prompted a visit to a cardiologist who ran the tests and suggested to see an endocrinologist. By the time I got to the endocrinologist (some 6 weeks later), the heart rate first went to normal, stayed normal for a few days and then went below (mine) normal. So, when the endocrinologist ran the tests, TSH was 65
I know it’s the opposite of the common knowledge about being hypo, but I really felt great. Everything became easier. I suddenly was able to increase weight in practically every weightlifting exercise, a regular run of 2 miles a day became so easy that I added a mile. When the endocrinologist called me with the results, I just finished a 3-mile run and was thinking of adding another mile - so easy it became. Obviously the endocrinologist didn’t believe me when I told her so.
I had loads of symptoms, excruciating pain in my thyroid area, temperature, chills palpitations, high bp , hand tremors. I've honestly never been so ill and it went on for 2 months and then the pain just suddenly stopped. All I can say is that you must be super fit ( unlike me! ) and that put you in good standing maybe.
well, subacute thyroiditis can be of two types: infectious (De Quervain) and autoimmune (silent). Mine was silent, so no pain or any sort of suffering other than resting heart rate in upper 70s. And silent thyroiditis is not Hashimoto’s (contrary to what the collective mind of this forum would say) and transient similar to the infectious one
There are so many types and presentations of thyroiditis! It can be difficult to work out exactly what is going on, especially since it is difficult to get to see doctor and get the correct tests done straight away. It is even more difficult as most GPs ( through no fault of their own) will not be experienced in diagnosing this and we are unlikely to see an endocrinologist quickly. If ALL the antibodies, CRP, ESR, full blood count and a scan were done immediately it would be easier but the NHS view seems to be that the cause is unimportant as it makes no difference to treatment. Add to this the fact that the thyroid function can change quite quickly , but again it is difficult to get timely thyroid function done and it all gets tricky.
Lastly, as the thyroid gland shrinks it gets even more difficult as the symptoms of pain and swelling may be less obvious.
Personally I want to understand what is happening and to know what to expect, but the NHS doesn’t always fund that. 😞
So sorry you were one of the unlucky ones. I presume it's now permanent? I'm seriously wondering whether to hold out now and just get help for my heavy periods as 7.3 is nothing by comparison and I might just be around the corner from returning back to normal.
Perhaps I may have been better off waiting, I’ve wondered if being on levo prevents the thyroid from working properly, if I were in your position I would wait and do regular checks, hope it resolves for you without meds
I don't think you can look at elevated TSH like that.
Imagine you went from perfectly healthy to being unable to produce any thyroid hormone at all. (This is a thought experiment - we don't need to think how this could happen.) So your pituitary tries to produces as much TSH as it can.
But it is unlikely to be able to produce 72 (or any other extremely elevated level). It takes time for your pituitary to be able to produce such high levels of TSH. In many, the pituitary itself enlarges in a desperate effort to increase TSH production capability.
Such high levels of TSH require time. The pituitary can't suddenly double, triple, quadruple its output.
Further imagine that at this moment, your pituitary, even working flat out, can only produce 7.3. But if it was a bigger factory, perhaps it too would produce 72? Or at the least, more than 7.3.
Consider your Free T4 and Free T3 rather than TSH. In diagnostic terms, your TSH has done its job by being well over the top of the reference interval.
Some waffle....... to add to your indecision ............
my (autoimmune hypo) diagnosis was delayed for 4/5 yrs due to nobody thinking about thyroid as a possibility and was not tested.
post partum thyroiditis (which also might fix itself in time ) ~ would have probably been the diagnosis if i'd been tested at the time ~ i had a brief ? mildly hyper phase for a few months (lost loads of weight /went a bit nuts) and then got slower and colder and more tired .. and i would have faced the same question as you .. (watch and wait, or treat now).
Those 4/5 yrs of not knowing what was wrong with me and thinking i was just being useless were no fun at all , and quite damaging emotionally (and probably physically).
However..... in one way i'm grateful for that delay in diagnosis, because i never have to question whether i'd have got better if i'd waited longer. I know for certain i wasn't going to feel better without levo ,and my thyroid wasn't going to get better, because it didn't happen ......... (mind you, 5 yrs was far too long to wait to find out )
TSH 5.7 /6.8 ... Total T4 in range 29%.... so results were not very bad looking , but exhausted zombie, wearing 5 layers indoors, too cold to take coat off, and too much effort to move arms to do so anyway .. moving/ speaking at the speed of treacle ).....TPOab 2499 ......Started levo.
.... if i had started levo before i was certain that it had become permanent... then every time i was not feeling properly well on levo etc , i'd probably be questioning whether i might be doing better without it....... I don't have to play that head game because i'm CERTAIN and that is a great help when dealing with the remaining difficulties i have on thyroid treatment. ~ It didn't get better within the normal timeframe for post partum thyroiditis, so it's permanent, end of argument. deal with it. ~
The stupidly high antibodies were extra proof of course , but basically it's the timescale that really proved the 'permanence' ....
Not sure what i'd do in your position , mainly because if you start levo now it IS hard to be sure when / why /how you would try to come off it... so in reality even if your thyroid COULD manage on it's own again , you might well end up staying on it .
~ not because you CAN'T come off once you start , you CAN always try ... but because it's not always clear WHEN to try to come off it ..... because taking levo effectively covers up the high TSH, so you don't know what the thyroid can do while you are on levo because it's not being ASKED to do much... you don't know what it can do until you come off Levo and allow the TSH to rise again (if it's going to) and then allow the thyroid to respond to the TSH (if it can) ...... and that process itself may make you feel unwell for a few months until the thyroid picks up the slack again ... if it's going to .
Your antibodies are not high enough to take as proof of 'anything much happening NOW' .. yes, they certainly do show "autoimmune thyroid problem" , but that doesn't mean it will ever get bad enough to cause hypothyroid symptoms or need replacement .... an 'autoimmune thyroid disease research study would quite possibly exclude you with a TPOab that low calling it borderline/ questionable evidence.
So, my circular waffle get's you nowhere , but if you are unfortunate and end up in the small group of hypo's who don't ever feel 100% better on replacement thyroid hormone .. then psychologically there is one advantage to having waited long enough to know for certain that you had no choice, ie. it didn't get better in 18 months if that is the average time for de-quervains.
and if you feel so unwell that waiting until 18mths is a bad idea , then take levo and just accept that in order to try coming off it in ? a years time , you may have to feel unwell again for a few months to find out how your thyroid copes without it .
... of course you might take it, find the right dose and feel better and have no problems going forward (that does happen to some people.. but they are not on here) .
From my experience, unless you explicitly raise this question (whether or not to try to get off levo), the doctors will never mention that preferring you to stay on it for life
That link is brilliant, thank you. I think you hit the nail on the head. I don't know why he wants me to stay on as I did discuss it with him about having a short course and he didn't seem very encouraging about that. Given what you have said and your experience and also Tattybogle's post, I can't see why I couldn't be weaned off in 6 or 12 months time to see where my thyroid is at by then.
Thank you for your thoughtful and insightful reply. You've understood my dilemma really well and have given me food for thought. I think if it wasn't for the consultant telling me I'd probably have to stay permanently on levothyroxaine I'd start taking it as I do feel pretty unwell despite only being subclinical. My arms are so weak at the moment, I could barely rifle through the clothes rails out shopping recently so it's not a pleasant state to be in. I think Cwbsi's reply below has hit the nail on the head and I think if I do take it I will explicitly ask to come off it as it's clear that it's often protocol to keep patients on it for some reason.
Haven’t read all the threads but spotted you’ve recently started having heavy periods.
Tranexamic acid from GP is excellent to help this symptom, taken through the heavy days. To stop you getting too anaemic, which takes time to recover from.
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