I had been on 100mcg Levothyroxine for around 5 years. Previously increasing from 25 since 2005. Since these results last Sept I've been on 75mcg 2days and 100mcg 5days. (A GP mentioned Sept 23, I had issues, but the record shows my TSH as 3.35.)
It's all being looked at by trainee gp, who's phoning in Feb to talk about the results. What usually happens next? I've got other issues but the last couple of years I've been awful. Tiredness, bowel issues, dry skin, fine hair, not growing, nails have ridges....
Could my thyroid have caused this? Any advice.
Thanks for reading,
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ricochetsmum
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Yes, all your symptoms could be related to having a thyroid condition &/ or key thyroid vitamins not being optimal.
So we can offer better advice, can you tell us more about your thyroid condition, eg current medication & dosage, plus blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
Please add the ranges for the tests, as these can vary between laboratories.
Forum advice on testing is to get the earliest possible blood draw (as TSH highest first thing) and take daily dose of Levo after the test (these are patient to patient tips!)
When did you last check ferritin, folate, B12 and vit D? It’s so important that these are optimal, not simply ‘within range’ as they support thyroid health. Please don’t supplement without testing levels first (& sharing with us for further advice)
Yup, low thyroid could most certainly cause all those symptoms, and a lot more beside
I'm afraid your post is not very clear. Are you saying that your TSH has gone down to those numbers in just 4 months? What was it before? You do know, don't you, that that is what it's supposed to do? The point of thyroid hormone replacement is to bring the TSH down to 1 or under. But at that point, it's totally irrelevant. It's the FT4 and FT3 you should be looking at. Is that all that was tested, TSH? That is wrong.
So, an idiot trainee GP decided to cut your dose just on the basis of a not very low TSH (I've had zero TSH for many years!), and without asking your opinion or how you feel? I think he needs reminding that your treatment should only be changed with your informed consent. He is not there to dictate to you, he is there to advise you. And there's no law that says you have to take his advise. So, by how much did he reduce it?
What should happen now is that you get retested on this lower dose after six weeks. And if you're not satisfied with the results - and remember, he should be at least testing the FT4 - and you still have all these symptoms, then you tell him so. And tell him you want your dose put back up to where it was.
Myself, I would always refuse to reduce my levo based on a single TSH test alone. I would want full testing. And if I considered my FT4 to be at a decent level - i.e. about 75% through the range - I would refuse outright to reduce my dose. The TSH should not be used to dose by, that is not what it was designed for.
I know that it is very, very difficult to get FT3 tested on the NHS, they are so ignorant, so would you be in a position to test privately, to see what's going on? Details of private testing companies here:
Dr will likely suggest lowering levo replacement as TSH low.
What is range on FT4 ? Ranges vary between lab, it might be within range of some, but “high” for some ranges.
FT3 is converted from T4 and the active thyroid hormone. Most symtoms can be due to this marker. Might be helpful to get this tested privately if GP / lab won’t test.
Do you remember what time you had blood draw for this last test? Recommended thyroid test are early morning, fast overnight, delay replacement until after draw. Cease biotin supplements 3/7 days before draw, biotin can interfere with test.
Your FT4 was looking a bit too high when you were on 100mcg Levo so lowering your dose a little was probably a good move. Now that your FT4 is 18 that looks ok but we don’t know where FT3 is, so I would resist any further drop in Levo.
Why is FT4 high at 21 when 23 is top of the range? We are all so different when it comes to our sweet spot. I need my FT4 near the top end of the range or my hypo symptoms are terrible. And as most GPs don't have a clue+don't understand how we are all so different, and being well rather than playing the numbers game, I personally would have stood my ground +refused any reduction if I felt well, for a change!! But that's me and after 40 years dealing with this, age has made me bolshy!
Thanks, I've got ME n a few other issues, so my brain isn't on full at any point 🙃 they perhaps needed to send me back a while ago but as you say they don't know enough. I will ask for a referral 👍🏻
Have you looked into boosting D3 to aid Your ME? I'm also assuming you're gluten free, again to aid your ME? When I was working (retired 15 years ago), I worked with a local ME/CFS group+as I was enabling them to write funding bids I learned a lot about the condition and the array of symptoms they had to deal with (including how many GPs still considered the condition psychosomatic - not much different to thyroid issues). Check out Dr Eric Berg - lots of natural assistance. Plus, check out the Central Lancashire ME/CFS service. Trust this is helpful.
I've been taking vit D3 for years, but i have a stomach/bowel issues, maybe not digesting. Yes, I'm glutenfree and dairyfree, advised by dietician and a consultant years back and it made a huge difference. I was sent to ME/cfs service who did more damage re psychosomatic, and yes still still hard to say it out loud, not knowing what reaction I'll get. Thanks for thinking. 👍
I use BetterYou D3/K2 spray as it avoids the gut+any issues it may cause! I take 4000 IUs. I also use their magnesium spray as magnesium essential as required as cofactor! Before I was diagnosed over 40 yrs ago GO said all my symptoms were psychosomatic! Went private+3 weeks later was having the goitre that restricted breathing removed before! And I worked in a MH hospital!! I also worked in an advocacy service+would always say to have someone with you when venturing into the GP surgery! So sorry you had a rough time with ME/CFS service! It's not on!! Gosh, some ppl have a lot to answer for! Trust you get all the help you need!
don’t worry about TSH being low I have been at zero for 20 years. It’s ok. You need to concentrate on T3 and T4 along with all the other tests that have been suggested on the forum.
Do you have an Endocrinologist? They are the only people that should be changing your medication. I was told that GPs don’t have enough knowledge to be able to change dosage. I had a similar experience to you, a locum GP wanted to reduce my meds but I refused and asked for a referral back to my endocrinologist. That’s when I was told never let a GP change the dose of your levothyroxine, If yourT3 and T4 were in normal range the GP should not have reduced your medication especially as you still have symptoms. I would suggest you ask for a referral to an endocrinologist urgently. You may get to see them in six months if you’re lucky.🙄 In the meantime ask for a more senior GP to put your dose back up whilst you are waiting. If you do have an Endo phone their Secretary and ask them to look at your blood tests and ask their opinion They will usually come back to you the same day in my experience.
My Endocrinologist has also written to my GP to tell them not to change my Levo dosage without reference to him.
Yes, GPs probably don't have enough training knowledge on these things, that's why there are specialists. Yet they seem to have ignored some past readings or at least not redone them. Also found a scan results for thyroid nodules and goiter nodules, it said needed to be redone, but hasn't been.
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