I am just reading the NICE guidelines which now state that post RAI you should start patient off with dosing as per 1.6mg per kg weight.
Monitoring after radioactive iodine treatment
1.7.1 Consider measuring TSH, FT4 and FT3 levels in adults, children and young people every 6 weeks for the first 6 months after radioactive iodine treatment until TSH is within the reference range.
1.7.2 For adults, children and young people who have hypothyroidism after radioactive iodine treatment and are not on antithyroid drugs, offer levothyroxine replacement therapy and follow recommendations 1.3.6 and 1.3.7 on dosage of levothyroxine for adults and 1.4.1 to 1.4.6 on monitoring of hypothyroidism.
I was put on 50mg and left there but now my bloods show TSH of 9.3 and so my dose has been upped to 75mg
The gp wants to retest every 3 months.
Given this higher dose for me should be c 150mg at this rate of 3 month testing, I won’t get there for a year, and given this should have been the dose I received straightaway would you advise asking the doctor to prescribe me this straightaway instead of slowly titrating up?
Thanks in advance for any thoughts on this
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jsy_girl
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Whilst I understand your anger, I'm not sure it's in your best interests to increase Levothyroxine any faster than the 6-8 week waiting time generally suggested on this forum.
I think you need to speak to the doctor again and if s/he is the same one who has been responsible for your care since RAI you could show the guidelines to enforce your upset and current disappointment in the lack of care you have experienced.
Three months is much too long a time between dose increases as in that time frame you could be starting your third 25mcg dose increase of Levothyroxine.
There are guidelines regarding dosing with Levothyroxine, and off the top of my head, believe the 6 - 8 weeks time line, as quoted on this forum to be the norm.
Initially the first dose of Levothyroxine is weight related but after this starting dose doctors tend to go by a TSH blood test, which is totally wrong, especially if your have had a medical intervention of either a thyroidectomy or RAI thyroid ablation.
Sadly, it seems, we are all ' lumped together ' with no understanding of why we are there.
It is essential that you are dosed and monitored on T3 and T4 blood test results with the aim being to restore a balanced ratio of around 1 / 4 T3 to T4 with both vital hormones in the upper quadrants of the relevant ranges, giving you back your wellness.
I believe, after RAI, my dose of Levothyroxine was 100 T4 daily - I was and am 6 feet tall and of a large frame and in primary care my dose of Levothyroxine was only ever adjusted up and down by a 25 mcg increase for over 10 years while I got increasingly unwell. I was dosed so that my TSH stayed in the range, so I was considered good to go, but anti depressants were offered for my continued ill health along with various negative comments regarding my weight, though I never remember even being weighed ????
It’s so ridiculously frustrating. I get your point and tbh suspected that really jumping up a dose wouldn’t be the most sensible thing to do now.
I will see if I can find anywhere that backs up the 6-8 week testing or at least use the NICE guidelines to convince my GP to retest after 6-8 weeks rather than 3 months.
The gp is not the one who treated me since RAI, as I was discharged from that consultant ages ago with TSH in the mid to upper of the range. Disappointingly.
They also won’t test T3, or antibodies. They’ve already told me that. But i will get that done myself at same time. So I have a record of what it is at that dose.
I was never weighed by GP but the hospital consultant always weighed me in conjunction with it all. They won’t get a good reading on my weight currently though as have lost 10 lbs Over lockdown due to putting myself on an insulin resistant friendly diet as I also have PCOS. fun fun fun!
Hoping that in conjunction with better managed thyroid health I will by the end of 2020 be feeling the best I have felt.
Slowly realising lots of things I experienced over the last 2-3 years might have been as a result of my thyroid too. It’s so awful. Thanks for your time in responding.
One's weight is just a suggestion to use as a guide to the dose of Levothyroxine one might be started on :
Once on Levothyroxine they dose to a TSH range, that sadly doesn't necessarily apply to people with AI thyroid disease, and those without a fully functioning thyroid due to a medical intervention, as we need to be dosed ad monitored on T3 and T4 blood test results.
Read up all you can and become your own best advocate and whilst these ridiculous guidelines seem to be written in stone and medics are unable to see or do the right thing by their patients, you will be better prepared to help yourself get better.
P.S. Another book for you - written by a doctor who has hypothyroidism - Barry Durrant - Peatfield writes in an easy to understand manner in Your Thyroid and How to Keep it Healthy and though we now don't have this amazing little gland we do need to know exactly what it does so we can try and compensate accordingly.
As you have been left woefully under treated it’s tricky to increase dose now
So you might find large increase too difficult to handle.
But bloods should be retested 6-8 weeks after each dose increase in levothyroxine
Essential to test vitamin D, folate, ferritin and B12
These are frequently low when hypothyroid
What vitamin supplements are you currently taking, if any?
Ask GP to test these now
Or test yourself privately along with thyroid at 6 weeks on increased dose levothyroxine
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thanks I suspect you are right re increasing dose too fast.
I will try to find a source that supports retesting 6-8 weeks to convince GP to retest in that timeframe.
When testing folate and ferritin do I need to stop multi vitamins for a week before? (If they contain those items)
I am taking a multi vitamin currently with lots of singular B vitamins and a D vitamin mouth spray but going to switch shortly to a B vitamin complex (glucose optimiser) which includes chromium. And D Better you mouth spray including K2.
I also take magnesium daily.
My vitamin D level is 65 (50-150) so could be higher. My b12 is 551 (120-900) so probably okay.
But haven’t done folate or ferritin for a while. A year ago my ferritin was 36 (15-300) so suspect that could be higher.
Is a selenium supplement recommended? I’ve started eating Brazil nuts daily but wonder if that’s enough.
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.
RAI is known to ' trash '' vitamins and minerals :-
and if you are anything like me, you maybe needing life long supplementation, starting with the usual suspects being :-
ferritin, folate, B12 and vitamin D as without these four being built up and maintained at optimal levels no thyroid hormone replacement will work effectively.
I'm sorry, there is no quick fix and it took me over a year just to build myself back up.
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. 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
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).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Part of this is, on the face of it, quite true. Liothyronine and NDT have never been subject to the same tests as any modern drug must in order to be licensed.
BUT - levothyroxine hasn't either!
This is a totally invalid rule.
After RAI the thyroid gland will, sooner or later, die. After that point it is generally accepted that you will continue to experience hypothyroid symptoms indefinitely and need to take NDT instead.
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