Results in - Free T - 3.6, TSH 0.17 - Feel awful but fear the doctor wont increase my dose back to previous amount - any advice?

Hi all - I've just managed to get my blood results through after my thyroxine was reduced from 150mg to 125mg. I had the test 6 weeks after changing dose.

My free T3 is now showing as 3.6 (range 3.1-6.8) and TSH 0.17 (range 0.3 - 5.0) - this was an 8.50am test (would it matter that I had alcohol the night before at a family party)

My previous reading before the change was Free T3 6.7 and TSH 0.02 (this was an 11.45am test)

Since the reduction I have put on 8lbs despite following a slimming world diet which I have previously been successful on (always struggled with weight but following this diet I was able to lose some excess weight and maintain on the maintenence plan sucessfully for 7 months until tablets changed (went back to the diet plan when the weight started coming on aside from 1 week over Xmas).

I have been very tired, the minute I sit down on the sofa I'm pretty much falling asleep - just can't keep my eyes open - despite having 1.5 weeks off work. And just before Xmas I was actually getting so tired at work that I felt like I was going to faint.

Other symptoms I'm getting are coldness or trouble regulating my temperature.

The other issue, which could be completely unrelated, but over the last 2 weeks I've had terrible achy legs and feet like I need to stretch them constantly - they just feel very tight and now this has now gone into pain in my buttocks (back of my pelvis or that region) where sitting and standing and walking causes pain. I haven't injured myself or anything to cause this - its come from nowhere?

Now my question is, have I tested too early and do I have a hope in hell of getting my doctor to put me back to my original medication?

Managed to get a previous reading too on my bloods - this was a 2 years ago test - Free T 5.7, and TSH 0.02

So my TSH is generally low ish against range.

When I was diagnosed I was 19, so I've had this for 18 years now. and for a large amount of time on Thyroxine I've been on the 150-175mg mark.

When I was diagnosed it was due to having a goitre and I'm sure I was told it was hashimotos thyroiditis.

Any help would be really valued - as I want to make a doctors appointment to challenge him but would like to hear your views on whether I'm being ridiculous

23 Replies

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  • And the other thing is I keep muddling words and feel generally slow.

  • Bellsonit,

    You're not being ridiculous. It is low FT3 which causes hypothyroid symptoms and yours has dropped quite a lot since dose was reduced. I suspect your GP reduced dose because TSH was suppressed at 0.02. Unfortunately it appears you need very suppressed TSH otherwise your FT3 plummets. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

    There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

    Aching legs is very likely to be due to your dose reduction but ask for ferritin, vitamin D, B12 and folate to be tested because low/deficient levels are common in hypothyroid patients and can present symptoms similar to hypothyroid symptoms. Low ferritin and low vitD in particular can cause aching muscles and joints.

  • Thank you so much for your reply - I know its crazy that having had this for so many years I should have a clue about whats going on and I clearly don't - but I guess its only since the conversations with my doctor when he was suggesting a drastic reduction (he wanted to take me from 150 to 100) that I found this board and started to understand a bit more so the advice I've got has been fantastic when I know so little.

    So I'm assuming that I'm not wrong to ask to return to my original dose of 150mg which takes me to the top end of the Free T3 range? Despite both sets of results coming through as below reference range for TSH? (on 150mg I was 0.02 and 125mg I am 0.17)

    Will my T3 level continue to drop or would it have settled after 6 weeks? I'm worried that the doc will see my TSH is still below range and therefore want to reduce me further?

  • Bellsonit,

    If your GP's target is TSH within range he will try to reduce your dose further. You should make it clear that you do not consent to further dose reductions and would prefer the higher dose is reinstated because symptoms have worsened since reducing. If your GP won't listen I'm not sure you will do any better by changing GP but you might consider buying T4 online and self medicating.

  • He only ever talks about TSH - So I'm trying to get as much research in as possible as I really need him to put it back up.

    His reasons behind the TSH are due to Osteoporosis risks?

    If this were you would you argue the case for it being put back to previous dose or would you accept that the levels were ok?

    I'm so confused.

  • Bellsonit,

    It doesn't matter what the levels are if you feel unwell since dose has been reduced. Argue for reinstatement of the higher dose.

    Increased risks of developing osteoporosis and atrial fibrillation are often quoted as reasons for reducing dose. The Rotterdam Study published in 2015 finds no association between TSH and atrial fibrillation. A meta-analysis of patients with TSH suppressed <0.1 found one extra hip fracture per 1,000 patient-years, a risk which I find acceptable.

    My TSH is suppressed at 0.01 since 2012. My endo decided it would be better less suppressed and reduced dose twice last year in order to raise TSH to 0.05. TSH didn't budge but FT4 and FT3 dropped considerably. I refused the third dose reduction she suggested and told her I would self medicate if she reduced my prescription further and she agreed to leave it as it is.

  • So TSH at 0.02 isn't horrendous then if I was within range for Free T3 albeit high end?

    Sounds like you've had a nightmare yourself?

    Is it easy to get your own meds?

  • Bellsonit,

    I don't think it matters how low TSH is as long as FT3 remains within range.

    You can buy online without prescription but it won't be any of the UK makes you are currently taking. If you don't get anywhere with your GP send me a PM and I'll give you sources.

    I didn't get the help I needed from my endocrinologist so self medicated for 6 months until I got myself well. Endo then prescribed what I had been self medicating. This endo seems determined to fix something which ain't broke which is why I put my foot down.

  • I would really appreciate this if you could - I will let you know how I get on with the Doctor. Wish me luck...

  • I do wish you luck, Bellsonit.

  • If he reduces your dose so much you might well get osteoporosis due to low prescriptions of hormones. TSH is fine to be used to diagnose a patient with hypo, but thereafter our dose should be sufficient for the TSH to be around 1 or lower. They just don't understand that and are very poorly trained in treating endocrine problems.

    Many doctors who treated patients and not the 'blood tests' took more notice of the clinical symptoms - to relieve clinical symptoms instead they'll give an extra prescription for the symptom instead of an increase in thyroid hormone replacements and this is an informative link.

    thyroid-info.com/articles/d...

    thyroiduk.org.uk/tuk/thyroi...

  • You could also point out to GP that the best way to prevent osteoporosis is to be active. If on a reduced dose you are then so tired and ill that you are totally inactive, that is definitely no good for your bones.

  • I definitely don't feel like I could do any exercise at the moment - tiredness aside I do'nt think I could lift my legs to run they feel so heavy and tight and the pain I'm getting in my spine / bum area - sacroiliac joint maybe? is so painful that it hurts to walk - have no idea whether this is related just that its come on in the last few weeks - firstly starting with the aching legs and feet then moving to the joint area?

  • Get your vitamin levels tested....likely to be low vitamin D

  • Will definitely ask for that . Is that instead of asking for my dose to be reinstated?

  • 6 weeks is quite soon after a dose reduction. (It seems to take longer to stabilise when reducing )

    ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells. Common to be low in all these when hypo. Low B12 can be reason for word muddling.

    Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

    (NHS rarely checks TPO and almost never checks TG. NHS seems to believe it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.)

    ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results.

    If you can not get GP to do these tests, then like many of us, you can get them done privately

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon - Thyroid plus eleven tests all these. £99

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

    If you have Hashimoto's then you may find adopting 100% gluten free diet can really help reduce symptoms, and lower antibodies too.

    Selenium supplements can help improve conversion and reduce antibodies too

    You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten intolerance

    Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's

  • Hi slow dragon - thanks for the advice - I'm only aware of thyroid function results so free t3 and tsh, not sure if they checked anything else so will give them a call and am going to book with my gp. Haven't been able to get one yet.

    So these vit and mineral deficiencies - if they're found should I just supplement or should I still be challenging to increase me thyroxine? I understand what you're saying in terms of stabilising I just feel like there are so many symptoms and today I was exhausted to the point of feeling like crying by 3pm and my legs are so restless I had to keep getting up to move about where they ache so much. Just feel all over the place, not to mention the rapid weight gain - I just can't put my finger on any reason other than the reduction on my dose which would have been at the beginning of November so around 8-9 weeks before my blood test give or take.

    The gp said wait 4-6 weeks?

  • Ditto suppressed TSH osteoporosis / heart risk endo stuck record! I am back there in a few weeks and dread the fight on my hands.

  • Oh no have you been having problems too? My gp is normally great and I've been on my dose for a good few years, I don't know why he's recently wanted to change me as my tsh was a similar level 2 years ago so a bit frustrated :(

  • Afraid so Bellsonit. I've been suppressed for years but other results low end of range. I now have high potassium which is being investigated and I hope won't be attributed to the dreaded suppressed TSH! My best wishes to you.

  • Have you gotten hold of your results and ranges? I just did a quick google on this as have no idea but returns showed it can be high in someone who is hypo? I have no medical qualifications but hopefully for you this is correct so you can argue your case like me that suppressing TSH is needed to get your thyroid levels up?

    I stumbled upon this healthunlocked.com/thyroidu...

    Have you had a reduction in your meds? Or have they been the same for a while?

    It seems my TSH has been suppressed for a few years at least and my last 3 tests showed supressed but within range, the meds reduction didn't bring my TSH within range however did make my Free T3 plummet to bottom of range. I was hoping that the results would show that as I have been feeling awful. I waited 8 weeks from reduction to bloods and in the last 3-4 weeks was feeling progressively worse.

  • Hi all - thank you so much for all of your help. After a shocker of a day yesterday where i pretty much ached all over and was so tired by 3pm I thought I was going to burst into tears I gained the courage to get an appointment today.

    With the help of you guys to understand this problem a bit more we had a really good conversation not just about the way I'd been feeling and my rapid weight gain but also the TSH and Free T3 levels and even down to the circadian rhythm of TSH and that my test back in October was near midday so could have affected the low read and that despite the large drop in my Free T3 my TSH had seen little change.

    So the great news is he's agreed to reinstate my dose back to 150 micrograms as he was aware that I'd been hypo since I was 19 so I've been taking levothyroxine for 18 years now and we discussed how I'd been feeling with various doses etc.

    He's such an understanding doctor :)

    So we've reinstated it and I have to go back in 6 weeks for another blood test, this time aiming for a consistent approach so an early fasting test.

    I mentioned to him about vit b12, ferratin, and vit d and he checked results from a few years back and I was within normal range but has suggested we re check inline with my Throid function test them to be sure nothing is deficient. He's also going to check there are no inflammatory markers to suggest any joint issues are developing due to the issues I've had with my legs and pelvis / sacroiliac joint though he suspects not and that it is probably linked to my thyroid.

    Your help and advice has really helped me with my approach with my doctor who I have a great relationship with. I was able to be really proactive and was informed enough to understand alot more about my condition so thank you all :)

    Lets hope I start feeling more human in the next few weeks

  • Fab, fab news! We need more like your doc. My potassium is now back in normal range, yay!

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