Good evening , I’m hoping that one of you very knowledgeable people will kindly throw some light on my recent symptoms
I was diagnosed with Hashimoto’s in 2019 and have recently had my thyroid bloods tested by the GP , swiftly followed by a phone call from the Dr wanting to reduce my dose . This happens at every annual review as they only look at TSH ( which is now suppressed) and not T4 which is always quite low in range
Each time I have to plead to keep on my dose of 100mg of levothyroxine as I usually feel so well & the Dr agrees as long as I promise to contact them should I experience any symptoms of over active thyroid
This time my readings were
TSH - 0.03 mU/L (0.27-4.5)
Free T4 - 13.9 pmol/L range (11–23)
( T3 not tested !)
Results vary very little from year to year
Once again I managed to persuade the GP not to lower my dose but over the last couple of weeks I’ve been experiencing aura - type headaches - tension behind eyes , odd pain in back of neck ,feeling a bit nauseous , dry eyes & occasional slightly blurred vision and the odd hot flush( I’m 62 and 11 years post menopause) . Nothing major and easily controlled with a paracetamol. (I’ve had occasional aura type disturbances for a many years but these have been more frequent of late ) . I have also developed a couple of mouth ulcers
I’m looking for some advice really . I appreciate that some of these symptoms are associated with hyperthyroid and therefore I’m concerned about ignoring them but I don’t think I’m over medicated due to my T4 reading (?) .
I’m sure I don’t have a vitamin B12 deficiency as my B12 readings have in the past been high (outside of range but GP not concerned )
I had exact same symptoms when I was prescribed Teva and it made me feel quite ill and had to change brand. I now take Accord levothyroxine and have done for some time with no issues ( I’m not aware of anything changing with the fillers used)
I’ve recently had my blood pressure taken and that’s completely normal . I have what I think is mild arthritis in my right arm & hand and sometimes a buzzing type of pain that radiates to the back of neck and think it could be related but I’m sure the GP will jump straight to my thyroid being over active ! I know if my Levo dose was lowered I’d have to fight like mad to get it raised again .
I’m worried that something is going on but at the same time concerned about lowering my dose & a whole host of other symptoms returning - can anyone advise on the best way to approach this with the GP please ?
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Debslee
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I’m not one of the people that is entirely convinced a suppressed TSH is without consequence when on levothyroxine treatment only, even if FT4 and FT3 are in range and you have your own functioning thyroid still based on my own personal experience.
As for your symptoms, you could be over medicated after all we can not see a FT3 result, there could be something wrong with your levothyroxine brand/formulation, you may have stimulating TRabs… the list is endless. Or, your symptoms could be completely unrelated particularly as you’re had a suppressed TSH for some time.
Come off the levothyroxine a few days and assess how you feel perhaps.
I’m afraid no one can answer this question for you and run for the hills if they can! No one size fits all.
I would have thought these symptoms are due to you being horribly under replaced...
Free T4 (fT4) 13.9 pmol/L (11 - 23) 24.2%
Looking back at your last Medichecks results (4 years ago on 75mcg) your cholesterol was high 6.2, folate low, B12 mid range and thyroid results terrible!!
Free T4 (fT4) 12.4 pmol/L (12 - 22) 4.0%
Free T3 (fT3) 3.25 pmol/L (3.1 - 6.8) 4.1%
T4:T3 Ratio 3.815
You desperately need an increase NOT a decrease, you may have to request a referral to Endo as it looks like you have central hypo where your TSH really isn't responding to low hormone levels
I'm not an expert but I would wonder why the T4 isn't higher given the very low TSH. I would want to address that issue before adding yet more levo which might lower TSH more without increasing T4 and therefore won't solve the problem. Has vit D been checked as that can affect things as I know from experience?
If you look back at the history it shows that TSH has never reacted much to the very low hormone levels and therefore looks like Debslee has never been given a full replacement dose hence the continued very low fT4 results
100mcg is still a relatively small dose suitable for someone weighing around 60kgs, I couldn't see anywhere Debslee has previously mentioned she is petite, lets face it anyone who has been hypo for any length of time are unlikely to be 🙃
I think that's rather confusing. Why wouldn't adding more levo increase the FT4? It often happens that the TSH doesn't correspond to the FT4, which is why using TSH to dose by is all wrong. dosing by TSH assumes that everyone has a perfectly functioning pituitary, and that's just not the case. And TSH levels don't solve any problems, anyway, not once you're on thyroid hormone replacement. It's pretty much irrelevant and dosing should be done according to the FT4 and FT3 levels. They are the thyroid hormones. TSH isn't.
Totally agree with TiggerMe , you look under-medicated. And so many symptoms are the same for under and over-medication. Your doctor should not be dosing by the TSH! That is 100% wrong - especially when you have Hashi's because it can fluctuate and become unreliable. And, dosing by TSH assumes that everyone has a perfectly functioning pituitary, and they just don't. I would tell him that if he's going to go to the trouble of testing the FT4, he should damned-well look at it! It will tell him that you're under-medicated whatever the TSH says. And an FT4 result is more reliable than a TSH.
There seems to be a growing trend here on the forum to say, “Ooh, a suppressed TSH isn’t right!”, doesn’t there?
But if you’ve been on thyroid hormone replacement for years, it’s really common and doesn’t necessarily mean that anything’s wrong. We don’t properly understand the mechanism—it’s really not as simple as “low FT4 = raised TSH”. If it was, things would be so much easier. In fact, isn’t it more “low T3 = raised TSH”? And in this case, we don’t even know what the FT3 is.
I think I’m going to stick to what I understand—that TSH is very much an imperfect tool for anything other than diagnosis of a thyroid condition.
All that just to say I’m in agreement with you GG. 🙂
if ONLY taking levothyroxine you look like you need dose INCREASE in levothyroxine
Before changing dose get FULL thyroid and vitamin testing
What is reason for your hypothyroidism
Autoimmune?
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Your T4 is quite low but your TSH is suppressed. That doesn’t make sense really. I think you need to check t3 also. Get them done privately on line by monitor my health if your gp won’t do it. It’s not expensive.
Have you considered splitting your levothyroxine dose. 50mcg in the morning and 50mcg going to bed. This might help your TSH from being suppressed, stopping spiking which causes suppressed TSH for some. I split my doses. . Also consider asking for liquid levothyroxine as it absorbs much better than tablets and it’s very easy to alter doses. It’s more expensive than tablets though.
(My UK medicines document has links to dm+d database which is a slightly more up to date source than BNF. But the story is the same.)
Tablets are from just over 50 pence through about £2 up to just over £15 for 12.5 microgram tablets. And, while tablets are in 28 doses, a 100 ml bottle only provides 20 doses (at one 5ml spoonful per dose).
Can you explain the reason for retesting thyroid antibodies? I thought positive antobody test just confirmed autoimmune cause and re-testing doesn't tell you anything more?
I think your symptoms are more a result of under-medication rather than overmedication. GPs are always getting in a huff if the TSH is below the reference range 🙄. Looking at your T4 results, these are quite low, given that you are on 100mcg levothyroxine. Like others have suggested, you need a private blood test to see where your T3 levels are, I suspect they are low as well, this is why you are getting symptoms. If you lower your levothyroxine like the GP suggested, you would feel even worse.
As an example, my TSH is <0.001 (suppressed), but my T4 is on top of the range and my T3 around 75 % through the range, only this way I feel okay. I am on 100 mcg levo as well (57kg). There might be something else going on with the TSH suppressed but the T4 not high and this needs to be investigated.
at the end of the day there is only one way to know if you are a little overmedicated . try lowering dose a tad and see how it feels .
I do agree with others ,overmedication seems pretty unlikely given how low the fT4 is , but something is supressing the TSH ,so knowing the fT3 level might be enlightening , so testing TSh / fT4 / fT3 privately before you change dose would be a good idea , just so you know where you are .
if you do want to find out for yourself if a slightly lower dose improves these symptoms without involving GP/altering prescription, you could take 6 x 100mcg tablets a week instead of 7 x100mcg, ..(.edit this equates to dose of 85.7mcg / day ... a very slight reduction)
( i'm assuming you only have access to 100mcg tablets... so rather than having a day without any at all which some may find unsettling , this is best done by cutting a 100mcg in half and having 50mcg on 2 days spread over the week eg 50 on mon and fri, 100 the other days)
if you do try it , it's important to try it for at least 6 weeks before deciding how it feels, as the first few wks after ant dose adjustment can be all over the place symptom wise, but (for me) things usually settle down and start to improve by wk 5/6 ....in the past i've wanted to chuck the towel in after 2/3 wks ,,,, but found i actually preferred the lower dose after a couple of months.
yes , of course it's possible you will feel worse on lower dose if overmedication is not the issue , but at least you'll know for sure, and can put the dose back up if needed without any argument from GP.
Wow thankyou everyone for so many posts . I’ve been out all day so just got around to reading them .
To answer a couple of questions . I weigh 67kg so hardly petite and my thyroid issues are autoimmune ( Hasimoto’s) .
I think the next step as many suggest , is to get a full thyroid and vitamin count . I struggle with getting enough blood for a finger prick test so may have to pay for it to be drawn . Once I’ve got the results I’ll look at a referral to a private endo. I have battled with the GP since diagnosed , finally felt well for a year or so and now feeling unwell again - I can’t see them agreeing to budge on the dose and can’t face the onward battle !
Can anyone who has gone private explain how it works please ? If it transpires that the dose needs changing will the private endo advise on correct medication and write to GP or will I end up having to purchase medication privately as well ? ( just working out how much all this is likely to cost! ) .
Thanks everyone for taking the time to respond . It’s very much appreciated. X
You may not need the private endo. If it looks like you need more levothyroxine than your GP is willing to provide, it would probably be a lot cheaper to self source the levothyroxine.
But one step at a time. Agree that private blood tests are a great first step. Let’s see what they reveal and go from there.
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