Last week, I got a blood test to check my thyroid levels after about 3 months of 75mcg levo. When I enquired of my result today, the receptionist informed me that advice from doctor is that levels are in normal range and continue with current dose. My levels were
TSH: 4.something (previous 6.something)
T4: 12.something. (Previous 10.something)
I feel frustrated and disregarded as I wasn’t asked how I’ve felt since the dose increase, just a decision made based on those results (without even a phone call). I felt an improvement from the last dose though, as I feel about the same as how I did before I started(the previous dose made me feel worse than ever). I’m annoyed that I’m not being afforded the chance of a dose increase, especially since I felt an improvement between 50 and 75mcg.
I’m now considering buying extra 25mcg online to see if that, along with the 75mcg from NHS, will allow me to feel like me again. I don’t think I have the energy to argue with a doctor again. The only reason it was entertained is because I referred them to the NICE guidance. I’m more than happy to concede if I see no improvement but I at least want to try.
Does anyone else supplement with pills they buy privately? I’m based in Glasgow, Scotland.
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Hoop1888
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Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Thanks for these links, interesting reads. I’m not sure how willing my gp will be to listen. It was a struggle getting a trial on Levo and that was only a locum who agreed to that.
It's holiday season. See if you can find when the locum you saw to get the trial of levothyroxine is back at the surgery and make an appointment with them.
If you don't have online access to your results (not all parts of the UK do) then ring and ask the receptionist for a print out of your results and say you'll collect them at their convenience (or give them a couple of days). This way you'll get the exact result along with the reference range, both of these are important for us to interpret your results and give you the best possible help. As ranges vary from lab to lab we need to have the ranges that come with your results, without them the result is meaningless.
If receptionist says she needs to get doctor's permission, that is fine and is normal, but don't let them fob you off with saying you're normal or they don't give print outs, etc, in the UK we are legally entitled to copies of our results, and always ask for a print out if no online access is available, it's the only way to get accurate figures, with hand written or verbal replies it's possible that mistakes can be made.
That’s interesting. Are you in the UK? Any GP that has seen me at the practise has always been reluctant to treat my sub clinical hypo, despite feeling symptoms quite badly at times. I got pushed anti depressants instead but upon reading some of the links provided on here, there may be incentives for GP’s not to prescribe Levo and treat with anti-D’s instead.
I may be being cynical here but I wonder if the reluctance to initiate Levo is due to cost, not the actual price of the medication which is peanuts, but the fact we get medical exemption from all prescription costs for life and the necessity for ongoing blood tests and monitoring. Whereas anti D's are an easy way to get the patient out of the door 😠
You may have a point, but I don't think that's what it's about. There is a complete lack of understanding with GPs and even endos, about how thyroid hormone levels affect the brain. I was offered anti-Ds, without even so much as a blood test for anything at all by one GP. I refused them as I instinctively knew they weren't going to be the answer to my mental health problem. The second GP did do blood testing first, that included thyroid. In his words, he nearly fell off his chair when my TSH came back at 69 and thyroid antibodies were 'off the chart'.
Even then, he still wanted me to take prozac, as didn't believe my thyroid was the cause. It was a long time before he finally acknowledged that I didn't need anti-Ds because my mental health issues had - co-incidentally - resolved since being treated for hypothyroidism!
I find it so disheartening that the medical profession havent kept up with latest thyroid research. I can understand rare conditions being mismanaged due to a lack of specialists, but thyroid issues are incredibly common.
Why is such a routine disease so little understood? I feel sometimes we haven't moved on much from using leeches and the medieval system of the 4 humours.
I asked for another consultantation to discuss the most recent results and armed with the information provided on the site and stressing on going symptoms was successful.
I am starting to feel better on subsequent increased dose.
Take a deep breath and make that call.
You are doing this for you and have nothing to lose.
In response to the last line of your post, yes, I supplement with meds I buy online.
If you can access the T4 you want to add, why not buy it and see how you feel? If you feel better after a couple of months, it would be more grist to your mill when battling with your doctor for an increase.
The trouble is they can withdraw your prescription if they think you are 'messing' with their treatment, it's a real tricky one, yes self medicate but only if you are willing to risk having to do it all yourself..... if you have enough wiggle room in your prescription timings by being quick to repeat I was able to add a 'little extra' and then tell my GP who put it up... it's all a bit of a game!
A very valid point .I have never told the medics that I add a bit, so as far as they know, my results are from what the NHS allows me. I'm fortunate in that even on my pension I can afford to maintain my subterfuge, though I do appreciate that not everyone is in that position. Nor are they sneaky, like me but I felt driven to do it.
Is it worth fessing up so that they provide you with the correct dose? If they have no issue with your results on the higher dose... you could treat yourself with the saving 🤗 I always worry that if they have it wrong on your notes what happens if you have a hospital stay for any reason 😳
I'd rely on my partner to smuggle it in😂. Honestly. I avoid my GP like the plague ! My TSH always appears suppressed because I take Metformin yet he still told me I was over medicated when my FT3 was just 5% within the range!
That level of ignorance doesn't deserve to be told what I'm doing 😱 .
Am not home at moment so not easy to get creative with providing references/ links. But if you Google Metformin and TSH suppression, lots of references pop up.
Thanks for that, by googling I was getting too many articles less relevant to me. Interesting 20 plus years ago I was diagnosed initially with diabetes, got the metformin, with TSH of 5.8 , and had to wait 18 months or so to get my TSH up to 10 plus despite having hypo symptoms all the time…. so metformin may have delayed Hashi diagnosis/ treatment. Needs to be better known! Now someone with TSH well below range, who needs an endo to fight my corner with GPS not to lower thyroid treatment, I wonder if these are caused by metformin still?
I had same issue, TSH just above range and they wouldn’t increase the dose. I sent requests for dose increases, phone appointments etc but they all got closed off. I also offered to do 12.5mcg increase a day in the end but that was closed off too. Keep asking, and book your next test in case. I unfortunately didn’t get the increase as had a holiday so had to have a break from pestering them, but I retested when I got back and had all the ref material in posts above ready, but TSH was up to double figures again so I got the increase. They were all puzzled at my results which made it even more frustrating as they just didn’t have a clue.
mrskiki Pebble23 SlowDragon how do I convince the doctor to listen to this guidance? I could quote some of this stuff (it’s a phone appointment) but I’m just not sure they will value it. They are so adamant when it comes to this. I’m speaking to them tomorrow morning. What is the strongest piece I could quote to them?
How did the doctor respond to you when mentioning articles etc. I can’t imagine mine would listen. It’s also worth noting i don’t have one go, I go to whoever is available, all of whom seem to have the same attitude about this stuff.
Regarding the Liothhronine article, I’m only on LEVO so would this be irrelevant or is it just the fact it mentioned levels needing to be around 2 that would be useful? I feel stressed about this.
Regarding the Liothhronine article, I’m only on LEVO so would this be irrelevant or is it just the fact it mentioned levels needing to be around 2 that would be useful?
The relevant point is these guidelines say optimal TSH is 0.4-1.5 on levothyroxine
If a patient still has hypothyroid symptoms and TSH higher than this they should get next dose increase in levothyroxine
HiSorry for the late reply.As regards approach I tried to take the we are working together,none confrontational approach but explained that as I continued to feel unwell I had done my homework to get the most from the call.I made reference to Normal range not the same as optimal for me and referenced my symptoms and bits of the articles directed to on the forum,such as Toft etc.
It worked for me but ,like the rest of us,Drs have different personalities and I may just have got lucky.
I pushed the doctor a bit as he said he wasn’t able to increase my dose due to guidelines. He send a note to the endo who looked at my notes and results over the years and suggested that not only could I get the 25 increase but suggested I should be on around 150mcg based on my weight. It’s good to know I now I have that scope should 100mcg not be enough.
" doctor... said he wasn’t able to increase my dose due to guidelines."
Don't know which guideline your doctor thinks say he can't increase dose when TSH is 4 .. but assuming he's an NHS GP , he should be following NHS N.I.C.E guidelines .. and they say this :
" 1.4 Follow-up and monitoring of primary hypothyroidism
Tests for follow-up and monitoring of primary hypothyroidism
1.4.1 Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis."
'TSH suppression' could be interpreted by some GP's as 'TSH below reference range' , but more correctly it means unmeasurable , or some sources would say below about 0.1 ish
A modest dose increase when TSH is 4 ish is no way in ANY danger of supressing TSH , what ever definition of supressed is used... (and if was tried and it did suppress TSH , the dose could easily be lowered slightly at follow up blood test to raise TSH a bit )
Same goes for causing 'thyrotoxicosis'..... that could arguably be interpreted to mean either: over range fT4 / or fT3 / or having symptoms of thyrotoxicosis )
So your GP had no grounds whatsoever to be saying "the guidelines won't let me"
...... they quite plainly DO let him increase your dose. at least as a trial ~ it is specifically stated that he can try this to optimise wellbeing ~ in black and white.
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