Just to seek some advice and insights from the knowledgeable forum fellows.
I have be subclinical hypothyroid for over ten years (unaware until recently). I had some health issues and a form of extreme fatigue developed between February and March. It was unbearable and I went mental enough to hassle my GP surgery to do something about it.
At the time, we said we'd try Levo to see if it can help. After I got the prescription, I found out the cause of the fatigue was due to another medication I was having. Since I stopped taking that one, no more symptoms.
So I was hesitant if I shall still take Levo, but decided to go ahead as I do have some mild symptoms of hypothyroid - poor temperature tolerance and etc. After I started Levo, I had a few episodes of muscle pains all over the body like with viral flu pain. I dismissed any thoughts and pop it it down to being underweather.
But last Friday, when I finally laid in bed, I realised my entire body ached. Saturday I woke up feeling two hands hurt. I again ignored my body's protest and took the kids out a few times. By afternoon, I was shattered and was barely able to move. And the body ache came back with a headache. I had ibuprofen but it helped very little. I slept with the ache and didn't rest well.
Sunday morning, my hands were screaming with pain in joints. I didn't realise they were swollen. And every single joint in my body ached too. I pretty much did nothing the whole day, just felt the ache imprinted inside my joints from limbs to ankle and knees. I couldn't pull myself up from sofa, as all muscles and joints were protesting and weak.
By evening, an intense itchiness developed on my tummy, my feet and my legs. I just kept scratching but saw no obvious rash. In the end, I thought to give antihistamine a try and it has put it to stop. At that moment , I decided to stop having Levo.
But I'm worried if I will have a post Levo crash. Is 17 days on the med enough long to shut my own thyroid production entirely? I know it may depend on each person, but generally speaking, shall I expect it's not too long to allow it to have the properly established effect on my system yet?
Any kind advice would be appreciated.
P.S. I informed my GP and will have a telephone consultation in a few days.
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Rolandawoo
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But I'm worried if I will have a post Levo crash. Is 17 days on the med enough long to shut my own thyroid production entirely?
It's not so much a question of how long, but how much. Doubtful the dose you were given would drop the TSH low enough to shut the thyroid down.
But, be warned: stopping thyroid hormone replacement will more than likely have a magical effect, and you will feel better than you have in years! This is an unexplained phenomena but it doesn't mean a thing, so don't read anything into it. It does not mean you shouldn't have been taking the levo, or that levo is not for you, and it can also happen when taking T3 or NDT. That's just the way it is. And, if you had hypo symptoms before taking it, they will slowly come creeping back.
Your symptoms sound like a huge Hashimotos attack. Classic indicators are flu-like symptoms, eg feeling hot & cold with headaches, pains and swollen joints, and extreme fatigue. Many feel a scratchy throat or swelling in the throat, or swollen lymph nodes in the neck, underarm and groin area.
Unmanaged Hashimotos slowly destroys the thyroid gland until the thyroid hormone deficiency is large enough to warrant replacement med Levothyroxine. This could be the reason for the development of subclinical hypothyroidism.
Have you had thyroid antibodies tested (TPOAb & TGAb)?
What were your results before taking levothyroxine and how much were you prescribed? It looks like you have a reaction to something in the levothyroxine tablet.
I’d say yes, exactly that. How much were you taking? Suspect not enough and not for long enough. It’s a long road! If you haven’t done private tests to get full picture oif t3 t4 tsh and antibodies I would do so. Ultimately the meds do take some getting used to but they do work when taking enough.
I have identical symptoms also for 3 years recently and my GP says it's not your thyroid but fibromyalgia, I couldn't accept that as I felt it has to be hashimoto's that's causing all the pain, carpal tunnel etc. Eventually referred to rheumatologist and have been diagnosed with inflammatory arthritis. I still feel it's coming from the thyroid but no-one will listen. Keep being told thyroid is fine.
Hi, thanks to everyone. I'm overwhelmed with the replies!
I started at 25mg for 17 days... I'm aware the symptoms are almost like RA or Hashimotos. But I had no obvious symptoms before I started Levo. I've always had a very fast metabolism and stayed slim all my life no matter how much I ate.
I can see why they were reluctant to put me on Levo now, as I barely had symptoms and the medicine does more harm than good if I didn't need it. But since it's quite messed up now, I'm not sure what consequence I'd have to take now. Medicine can be a two-sided sword really...
I stopped taking it yesterday. The joint pains are better but still very sore and weak. My hands were still very swollen when I got up, but a little less than yesterday. But they still feel very tender. The biggest problem is around my hips. Last night, they were so sore and it reminded me of the last part of pregnancy - screaming sore hips right before labour. I'm really scared if the pain will stay!
Tests were done in March twice:
TSH level:
Date Result
14 March 2024 7.58 mU/L
6 March 2024 5.84 mU/L
19 July 2023 7.49 mU/L
29 March 2016 4.24 mu/L
13 February 2013 6.47 mu/L
T4 level:
Date Result
14 March 2024 13.7 pmol/L
6 March 2024 13.6 pmol/L
19 July 2023 15.2 pmol/L
29 March 2016 10.9 pmol/L
13 February 2013 11.3 pmol/L
Thyroid Peroxidase. 15IU/mL
Serum ferrintin 25/ug/l (normal range 14 to 148)
Serum folate: 7.7ug/l (normal range 2.9 to 50)
Serum B12 746ug/l (normal range 160 to 925)
All the other profiles were within range, including full blood count test (is that anti-body test?) and bone profile test. Serum albumin was quite high at the edge 50g/l, but I did the blood test first thing in the morning without drinking much water accompanied by a long journey to the hospital. Probably a little dehydrated.
I started at 25mg for 17 days... I'm aware the symptoms are almost like RA or Hashimotos. But I had no obvious symptoms before I started Levo.
Hashi's doesn't have any specific symptoms. It's being hypo - i.e. low T3 - that causes symptoms. And you may think you had no symptoms before starting levo but there were probably little things that you just didn't associate with thyroid.
But it's not in the least unusual for symptoms to exacerbate when you start levo, or even for new ones to appear. Especially when you're on such a silly little dose as 25 mcg. That is almost certain to make things worse. Doesn't matter what your symptoms were or you TSH level, a starter dose should be 50 mcg unless you're over 65.
And, I imagine - being 25 mcg - the pills were Teva? A lot of people have problems with Teva because of the fillers/excipients it contains.
I can see why they were reluctant to put me on Levo now, as I barely had symptoms and the medicine does more harm than good if I didn't need it.
No, they weren't reluctant to put you on levo because you had no symptoms, they know nothing about symptoms. They were reluctant because your TSH was under 10. And they have this rediculous idea that you can't even have symptoms with a TSH under 10. Which is doubly rediculous because it's not even the TSH that causes the symptoms!
Levo is not medicine in the normal sense of that word. It's thyroid hormone replacement, replacing the hormone your thyroid can no-longer make enough of to kep you well. And with a TSH over 7 that was certainly your case, whatever the doctors may say. A 'normal' (euthyroid) TSH is around 1, so you can see that yours was high!
As to it doing more harm than good, it won't do very much harm. Lots of research has been done giving euthyroid people huge doses of levo that they didn't need, and no harm came to them. So, all that was just excuses not to treat you, because doctors hate treating hypos!
I've been taking b12. A cracked skin on one corner of my mouth since Feb. Nothing heals it.
B12 taken in isolation is not going to do you much good. All the Bs work together and need to be kept balanced. So, you'd be better off on a B complex, containing all the Bs. But make sure it's one with methylcobalamin (B12) and methylfolate, rather than cyanocobalamin and folic acid.
It takes 6-8 weeks for Levo to leave the system...
Not on 25 mcg it doesn't. The half-life of T4 (levo) is 7 days - approx. So, after one week you'll only have 12.5 mcg in your blood. After two weeks, you'll have 6.25. After 3 weeks 3.15 - and that will probably be used up by your body before then. And, if, as seems to be the general opinion, it's the fillers upsetting you, they will be gone long before that.
Thank you! I'm quite unsure, as it's not in my control. I still have Merina in my body which had brought non stop bleeding over 3/4 of last month. I can't remove it because of polyps!
So there, not all my hormones can readjust naturally and stay in tune even after stopping Levothyroxine.
I didn't think I am anti-med. But I just came to realise hormones are everything for our body and are not to be taken lightly to manipulate...
Hi there - are you saying the Merina coil can't ever be removed or just at the moment until the 'expiry' date of when you are supposed to have it taken out comes along. It could be that it is infected causing you to feel poorly - I assume you are having it checked out by a gyney person ? - certainly it is a progesterone based item I believe - so it is obviously not working if you are still suffering with the heavy bleeds - low thyroid will cause heavy bleeding - but it could be that your thyroid levels are off because of the coil which on checking should be removed after 5 years or 4 years if being used as part of HRT treatment use - I feel that the crux of the issue could be the coil See this article but I do not recommend the supplements being advised here - just the article on how Prog can cause imbalance in thyroid which could be of interest and information.
Thanks for sharing. I suspected the coil to be the culprit for the fatigue issue. But I can't take it out until at least 6 months after to allow time for thinning the liners. The bleeding after coil put in is apparently "normal" to be expected for the first half year.
I don't think the joints and swollen hands are to do with coil. Coil has been doing it's job since mid Feb. Not necessarily all helpful as shifting balance of hormones can be tricky. But the muscle/joints pain came all a sudden along with Levo. I feel a bit better today after stopping Levothyroxine yesterday. We will see...
Hi there sounds like your adrenals are down so inflammation sets in when you try to up your metabolism which needs the adrenals to up their game too. You could try taking a B complex highish dose which will help. It might be that your body doesn't like the Merina coil and is causing inflammation which would show in blood tests etc. - I was one of the first trialled on the coil back in the early 1970's - I didn't get on with it and in fact got pregnant with it but that is another story !
My head is spinning... I've been taking b12. A cracked skin on one corner of my mouth since Feb. Nothing heals it. Could be iron deficiency or vitamin D or b12... having them all at the moment! Slightly improving.
I have a whole stack of blood test papers to be used next month. But with the coil, I hope it can settle and hang around a bit longer until six months scan. I'm not sure next scan in two weeks can go ahead , as the bleeding is getting a bit random and all over the place...
Gosh , you got pregnant with the coil? Did it move out of its proper place???
Cracked corners of mouth are one of the many symptoms of b12 deficiency. I had that among thirty other symptoms. Never healed, over years & then went poof after loading doses (b12 shots).
Not saying that is why you have that going on, but definite symptom.
I really think it is your choice to stop Levo and see how you feel. You said there was another medication that you think was the cause of your fatigue. The only way to tell is stop taking Levo and see 🤷♀️. You can always go back on it later and perhaps try a different brand.
Whilst I can't be sure about the joint pains, but the itchiness which was stopped by antihistamines was certainly an allergic reaction.
I just hope my body can iron out the effect so far. I'm going back to work tomorrow after being at home for five years. All the achiness doesn't help! It takes 6-8 weeks for Levo to leave the system...
Others may disagree with me ( and they are far more knowledgeable than me) but my instinct tells me 17 days of Levo will probably leave your system quicker than that 🤷♀️
Itchiness can be a liver issue - i.e. liver not happy about converting or metabolising the item you are trying to take - or can be related to kidneys which also have a role in metabolising anything we put into our system by the way of medication in any form etc. - anti histamines just stop the histamines being produced by the liver. I had this but the liver was compromised due to slow metabolism due to low thyroid hormone - was unable to take more than 1 antibiotic before I had reactions - when on thyroid hormone eventually I was able to take the very same antibiotics/medication without any issues at all.
That gets too complicated. But isn't the reaction of liver or kidney a form of allergies after all? Plus swollen joints is a form of autoimmune symptoms. Itchy skin is in the same category - allergy and immune system overacting.
Sorry your reply is a bit too complicated for me too - I was only trying to point out that the liver is involved in low thyroid response - I have 4 auto immune disease states and inflammation is involved in joint pains etc. - but the itching etc. in my case anyway shows me my liver or kidneys don't like what I am doing as the histamine is a response from the liver - an allergy is more localised I believe. An immune response with an allergy isn't necessarily coming from the liver/kidneys directly but could be localised from the stomach even which can trigger an immune response i.e. as with coeliac disease. Hope this helps !
I did mean literally it's getting complicated (as it should?). I always understood skin reaction=allergy=immune system activated. Wasn't aware liver or kidney could play their separate roles to make skin react. It just made my head spinning fast. Hah!
I guess there's a whole lot to read and understand in that area.
It's getting scary to read too much though, as I'm almost put off now by any of these long term medical interference on a functioning body. The body is not operating perfectly, but when medical treatments are put in place, sometimes the rebalancing can be too challenging!
Rolandawoo - there is certainly a lot in these post replies! When we have faulty thyroids, it causes so many symptoms that can masquerade as other ailments.
But as my reply below notes - the bad news/good news is that your thyroid bloods point to thyroid hormone levels that are without a doubt causing symptoms.
When it comes to low thyroid hormones, it impacts our entire body head to toe and down to every cell. So the good news is that for most of us, addressing those levels improves a basket of seemingly unrelated symptoms.
It is a long road, and improvement doesn’t always mean we end up feeling 100%… but we do feel “better” than we did.
Also, in the case where the traditional first step of Levo doesn’t work for you, there are alternatives to Levo. But with bloods like yours I wouldn’t think the answer is NO Levo. It just means you need a better alternative.
Thank you very much for being so thorough with the cited chart below. It does shake me a little. I've only read some clinical research as to why "subclinical hypothyroidism" (i.e. TSH under 10) usually is not treated.
I will have to do a bit more research. And the GP surgery seems to be in a rush to set up an appointment for me, which is very unusual.
I honestly felt fine until the coil was in place. But the reason why the coil was in place to begin with, is to do with hormones caused polyps. So, it might be something to do with thyroid after all.
I have only skimmed the above replies about the coil.
But I will say - in the beginning for all of us, everything is so completely and totally confusing and overwhelming.
Because 1) low thyroid causes literally a million symptoms 2) having low thyroid hormone levels can also be correlated with separate but related issues (like other adrenal system problems, or other autoimmune disease and almost always vitamin deficiency ) and also 3) there can be things that are sort of related (because all our hormones are…) but also are just separate things in their own (like menopause for example)
Detangling these is actually very hard. And takes a bit of time as we isolate it all.
For myself and many others - my symptoms cleared up with my optimizing my thyroid levels. For example: thinning hair, joint pain, ROSACEA!, a new depression/anxiety feeling (A SYMPTOM of low thyroid), feeling freezing cold all the time, … some others.
And some have lingered - like fatigue, brain fog. But I am not optimal on my thyroid yet.
So while you tackle everything dynamically, one thing you can get a lock on is your thyroid. Your TSH is too high, and your T4 levels are too low.
This forum will be an amazing support in learning and keeping it all straight. I’m going to get back to work now : ) But take a deep breath… you are in the right place to learn everything you need to know about your thyroid!!!
It sounds really hard! I have little idea when the thyroid issue started. Postnatal with my first child? It's likely. That's the only period of time things changed dramatically for me. Unfortunately, I shall never know for sure.
But honestly, hypothyroid or not, I'd be happy to just be how I was last year this time. I had some depression issue since summer. But a lot of things were in the play.
As SlowDragon said, Levo is to replace, not top up my own thyroid. It shuts down the usual body function, regardless if it's working insufficient or not. This scares me. I don't really want to fully rely on a medicine to make changes. I don't feel I need that much of a correction, if you see what I mean...
You said based on my TSH and T4 level, my thyroid has been working too hard to produce very little. May I ask what if I leave it as how it is? Will there be any adverse effect to let it carry on working so hard?
GP has put an appointment for this Friday. I'm not entirely sure what result I want to achieve.
Rolandawoo I know this thread is getting out-of-order with all these nested replies. It's the only downside of this amazing forum. You have excellent input top to bottom, that I know you'll read and re-read as you figure this out.
So here's my opinion, based on my experience, and drawing on the things I've learned from smarter people than I on this forum.
1) You say you had no symptoms before the Levo. I think one day you will look back and realize this isn't quite true. In Feb and March you had extreme fatigue, that's why you were on Levo. Also - a "little depression but there was a lot going on,,," Depression is indeed a SYMPTOM of hypo. So there might have been a lot going on, but physiologically the "depression" feeling almost certainly had a boost from your low FreeT4 and FreeT3. Also, you don't say how old you are, but typical hypo diagnosis is 50 years old, and many/most of us look back over the ~10 years prior to diagnosis and a light bulb goes off. And for many of us the whole thing goes slow... then fast. I had symptoms for 8 years that were a bit of a bother. In the year 2021 I started feeling them all hit me, and I felt 90 years old and would tell everyone "something is WRONG." They joked and just said haha you're getting old!
3) Levo is not a pharmaceutical/medicine. We are not "medicated" on it... we are "replaced." All of us have that awful dreadful scared moment upon learning these things about ourselves. Doctors are so flippant about it - oh yes, you will need to take a pill every day for the rest of your life! Like... what????!!!! You will have more time to learn up on this part, but the one thing I do want to point out is that Levo is NOT a drug. It replaces (indeed, it does NOT top up) what our thyroid is failing to make. And regardless of whether you or anyone "wants" to be on Levo... your possible auto-immune, but definitely underactive, thyroid won't care : ) If you are not making enough, you're not making enough and you need to take it exogenously.
4) So you want to wait on the Levo. Many people in your situation want to be sure that they actually need the Levo. And after 17 days,I don't think anyone here would say that's done any permanent changes to your pituitary or thyroid function. If you go off, I think you will return to exactly where you were before you started - your struggling pituitary will still struggle, your Free Ts (FT4 and FT3) will continue to be low... and somewhere underneath it all your body will begin to have trouble with its cellular processes that require T3. When this happens, your adrenal system will compensate without you even knowing it. Over time this will dig a deeper hole. But after only 17 days and lots of things going on, can't say I really blame you.
5) If you want to delay, a great idea is ALWAYS to get crackin' on your vitamins. You are deficient in all noted above (which is due to your low thyroid hormone which makes it impossible to absorb the nutrients you do eat.) But all of us here spend a lot of time and effort optimizing our vitamins. I can tell you also from personal experience, my daughter has ambigious thyroid blood results, and so while I figure out whether she needs Levo, I am doing a lot for her vitamins!
Lastly, antibodies - I think your Thyroid Peroxidase. 15IU/mL results is an antibody test. I will guess the range is <35 and so this (if accurate) means that one test was not positive for antibodies.
Please let us know if you have any other results that look like this:
No, no other antibody tests. Will request for more!
And a lot food for thoughts. I will need to digest slowly. Thank you for taking time to put down so many words for a stranger like me! You have a very kind heart!
We need a range for the T4, but with your TSH there is statistically a zero chance you dont need some type of thyroid hormone replacement.
If you - like jimh111 said - are having a reaction to a filler in whichever Levo tablet you’ve taken, that’s a possibility.
But I’m just going to tag greygoose SlowDragon and radd who replied above but probably haven’t seen the follow up replies. Because I with bloods like those, although you may very well have some other things going on, it’s fairly straightforward advice to tackle your thyroid hormones, and let vitamins/minerals (which are also too low for you to feel well).
Here’s a chart that is often helpful in clearing up ambiguity about what our TSH level means.
This is one study that shows the distribution of TSH test results in a population that does not have thyroid problems.
Even your lowest readings in the last 8 years are unambiguous.
Now the “why” we might not know yet depending on the antibody tests you’ve had. But no doubt for at least 8 years your pituitary has been working way to hard for way too little output from your thyroid.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264l
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Also - the one ab result you do have is considered negative.
AB tests when above the range provided are “positive” and are conclusive for autoimmune cause for your thyroid disorder.
When they are negative - like this one - it doesn’t mean anything conclusive, other than an autoimmune cause can’t be confirmed. Antibodies fluctuate, they do go up and downs
That being said - ab tests can be in the hundreds or thousands when us hashi or graves folks have a flare up : ) so 15 as a point in time is definitely a “negative” test result.
Antibodies are also a little complex and sometimes misunderstood. I like the pic I attached for showing the overlaps. Som e are more indicative of Hashis (under active) vs graves (over active, which you are not).
If you have to fight for these a tests, TPOab and TGab are the ones. The others are largely for graves/OVER active which you have zero history of. But all four would be good to get.
Very informative. I can't imagine the long journey you've been through to become so well informed! Hope you are doing alright and have had it under control already. 🎖️
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Should I stop Levothyroxine
Testing my thyroid after stopping levothyroxine
Levothyroxine absorption/ used to work well but suddenly stopped after years of good experience. 
Stopped Levothyroxine, and the doctor said to do it!
