I will start with Vitamin D. In May/2024 my level was 37 and i been taking vitamin D 800ui from Holland Barret and my level in August/2024 was 39 then start taking 3000ui ,,BetterYou'' spray till now by the way both those previous test was done my Blue Horizon. Then was not testing privately anymore after taking D3 in spay as i had nhs thyroid testing booked for December and asked my GP to add Vitamin D on list. My vitamin D level now was 33 so drop down even after I was taking 3000ui a day in spray. All this levels are in nmol/l. and ranges are all same 51-374 normal, 50 adequate, >374 toxicity ... my GP just texted me result and say keep taking 1000ui every a day but then next day I had call from my surgery from another GP and she prescribe me 40 000ui once a week for 7 weeks, yesterday had it for first time, sound all good to me ? your thoughts ?
TSH in end of August/2024 was 5,13 after being on 62,5mcg for 8 weeks so I increased to 75mcg and let my GP know about it she was not happy and said she can not accept private testing result so she offered me not to increase a dose and test me or increase to 75mcg and test me in 3 months i was already few days on 75mcg so i decide to continue a test in 3 months by NHS ... I was planing to to test private after 6 weeks but i was not feeling bad at all so i did not test, but week before those 3 months gonei start to feel horrible, muscle, bones and joint pains and had that test and my TSH was 6,42 (0,38-5,3) but my GP said I have endocrinology in week time so I should ask them if to increase to 87,5 or 100mcg, Had endo on Monday and she said to go to 100mcg and aim TSH to have bellow 3 or highest at 3 so I'm 2 days on 100mcg now but not any testing by endo at all, no checked free t3, t4 or total t4, any thought on this ?
but main reason I had endo referal by GP was due to more than one hormone imbalances as I also have low testosterone on 4 repeated blood test in last 9 months, but when i went to endocrinologist she just checked all past results and said i have to wait another 3 months and will be tested again but in this 3 months i have to lose some weight ... imagine knowing you have low testosterone maybe for years, feeling bad and your GP ignoring that for 3 months then decide to do you a referal then you wait 3 months for endo went there find out referal was wrong change GP ask for another referal new surgery wait another 3 month then go to endo after 9 month a she tell you to wait another 3 months and ask you to lost at least 7kg weight even when your testosterone was low when you was 12,5 kg lighter what a joke, have all symptoms of low testosterone no treatment, she said if still low after 3 months she will do a MRI scan of pituitary gland but don't even test pituitary gland hormones knowing low acth can cause low cortisol and low cortisol with levothyroxine can cause serious problems, anyway I checked cortisol privately twice half year ago and been ok but that time I was on lower levo, your thought on this if anyone got same problem ?
ALSO ENDOCRINOLOGIST SAID IT WAS TO EARLY START TREATING MY TSH WHEN WAS ON 8
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At the beginning, it can be quite slow to work up to your replacement dose. The question is, when you were on 50mcg levothyroxine and your TSH was above 5 (I assume), why did the GP only go up to 62.5? Unless you have cardiac problems or are very sensitive to levothyroxine increases, you would normally go up by 25mcg in one go.
I understand that you are now on 100 mcg, which is going in the right direction, but to get a more complete picture, you really need to test T4 and T3. If you are only going by TSH, you do not know where your thyroid hormone levels are, as the TSH feedback from the pituitary does not always work as it does in a person without the disease, hence TSH should only be used as a supportive figure and treatment should really be guided through T4 and T3. In general, replacement doses are between 1.6 and 1.8 mcg per kg of weight, so depending on your weight, you may need further increases. Make sure that you are getting tested again after 6-8 weeks on your 100 mcg dose (with T4 and T3 as well), so you can see your progress and can make the necessary adjustments to get to your optimal replacement dose. And for your GP to suggest losing weight, he needs to be slapped hard, as your weight gain has very likely been caused due to your low thyroid hormones, as your metabolism is slowed down. Once you are on the correct replacement dose, this should regulate itself again.
With regards to the 40,000 IU of Vitamin D3, this sound okay, however I personally am not a fan of big doses. They are good at raising your levels quickly (provided that you can absorb the high dose properly), but I personally would prefer taking some Vitamin D3 every day. I assume that this Vitamin D does not contain any Vitamin K2 either? MK-7 K2 is needed for the calcium to be absorbed into the bones. I have included a publication for you to highlight this.
Hi, some people here always recomend me here to increase only by 12,5mcg. I know all that, but NHS testing just TSH. They test all Thyroid panel only once at beginning, I will test all that privately in about 6 weeks and then when my NHS test will be due in 3 months from now will ask for all thyroid panel too. Yes I will retest as i know I will probably will need higher dose. Will see Where I'm after GP treatment with vitamin D and then see. Thank you so much for you comment.
I know it is difficult to get the GP practice to do the relevant tests, it is a constant battle. However, if they refuse to give you an increase you can cite the NICE guidelines which say the replacement should be around 1.6 mcg per kg of weight - they cannot argue against that, especially if your dose is much lower. If they are still reluctant, you can say that you are very symptomatic and not feeling well and that you would like to 'trial' an increase to see if it will help.
100mcg is quite a low dose, especially for a bloke
How much do you weigh in kilo
I'm 2 days on 100mcg now but not any testing by endo at all, no checked free t3, t4 or total t4, any thought on this ?
Get FULL Thyroid and vitamin testing 6-8 weeks after increasing to 100mcg
Which brand of Levo are you taking
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
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 somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
When I started Levo in April/2024 one GP wanted me to start on 100mcg and another on 50mcg. So i started on 50mcg. Then I was increasing by 12,5 mcg only as people here told me that it will be better as like that i not gonna miss spot where I feel the best. Anyway i increased to 62,5mcg and later 75mcg but when informed GP about it both times he was against it, I checked privately both time after 6-8 weeks and they do not accept private testing and my TSH was at 5 and NSH range is 0,38-5.3 so they told me I don't need to increase as I'm in range i told them i want to have my TSH in lower half of the range then they said ok and promised me testing in 3 month. Then I tested and my TSH was 6,4. My bad I should tested privately in between to avoid going my TSH that high. So Endo increased my dose to 100mcg a said will test in 8 weeks but later she changed to 3 months as she need to test my Testosterone too and she want me to lose some weight so i need more time and I have to keep my TSH highest at 3 so I will check privately in 6-8 weeks and also my vitamin levels. I was 105 kg now i'm 112 kg but i eating bad and lot. Just about to start my diet this days. I'm taking accord levothyroxine, I know about it i read it lot about doses by weight problem was when they put me first on levothyroxine it was trial to see if i will feel better as I was always complaining about health etc trial because they said treatment starting when TSH is above 10 and mine was at 7,8 but it was question of few months to be there anyway. Few things improved but I still feel bad maybe because I'm not only final those yet but I also have love Testosterone and symptoms of that bothers me more. Doctors will check if there not problem with pituitary gland after 3 months too. Just in case I check my cortisol level between Xmas and New Year. Thank you for your coment is always helpful
Far too many GP’s don’t understand how to manage hypothyroidism
There’s almost 2 million people in U.K. on levothyroxine TSH should. It’s the 2nd or 3rd most prescribed medication, so it’s definitely not rare……but it is rarely well managed
Levothyroxine doesn’t “top up” your own thyroid it replaces it ……which is why almost everyone will end up on approx full replacement dose - typically around 1.6mcg Levo per kilo of your weight per day
On levothyroxine TSH should always be below 2
Most patients feel best when Ft3 and Ft4 at least 50-60% through range…….testing correctly, early morning and last dose levothyroxine 24 hours before test
Typically TSH will be around 1 or less at these Ft4 and Ft3 levels
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
I know I will need to increase my dose again, but I doing i right now ? increased by 25mcg now and will rested and see then probably increase again by 25mcg
I should never increase by 12,5mcg before when on small doses it will more make sense to do that way when closer to my final dose to do it that way
My sister have removed her all thyroid and she is on 112mcg m, my mom had removed half of her thyroid and never been on higher than 50mcg but they both on medication called Euthyrox
Being on inadequate dose Levo will make it harder to improve vitamin D
August/2024 was 39 then start taking 3000ui ,,BetterYou'' spray till now by the way both those previous test was done my Blue Horizon.
My vitamin D level now was 33 so drop down even after I was taking 3000ui a day in spray. All this levels are in nmol/l. and ranges are all same 51-374 normal, 50 adequate, >374 toxicity ... my GP just texted me result and say keep taking 1000ui every a day but then next day I had call from my surgery from another GP and she prescribe me 40 000ui once a week for 7 weeks, yesterday had it for first time, sound all good to me ? your thoughts ?
So that’s approximately 5,700iu per day
That might be enough, or it might not be
Retest at end of 7 weeks
Once you Improve level, very likely you will need on going maintenance dose to keep it there. It’s trial and error how much that may be.
Will do all that, that was the plan with GP too after those big doses to retest and see. But will need to take vitamin D still to keep it up. Will test that regularly. By taking better you spray my Vitamin D drop from 39 to 33. Was having 3 sprays a day 3000ui for 3 months and it drop do not miss even day. Yes I taking again magnesium, folate, b12, Iron ... I had them checked all in past i was low only on vitamin D everything else was in normal range but need to top it up. But now I had break from vitamins i was only taking vitamin D now i again taking them all.
By taking better you spray my Vitamin D drop from 39 to 33. Was having 3 sprays a day 3000ui for 3 months and it drop do not miss even day.
Obviously you need higher dose, especially while on inadequate dose Levo
Personally I found by experimenting that I needed 7000iu daily vitamin D mouth spray for 3-4 months to increase vitamin D levels from 50nmol to 100nmol and now maintain level at 100-125nmol with 5000iu daily
Everyone is different in how much vitamin D they need, but thyroid patients frequently need higher doses
Many,many thyroid patients find they need to take relatively high dose vitamin D, plus separate magnesium and separate vitamin B complex daily and continuously
And initially a separate B12 if serum B12 below 500 or Active B12 below 70
I took 4000iu a day and it took me 4 months to come into range. The fact is we all require different amounts. Now I take 12000iu 2 times a week with natto. My friend who is a geriatric doctor injects pensioners 25000iu every week. I hope that gives some perspective.
What a ridiculous runaround. You need to increase your levo as most people feel better with a TSH less than 1 and t4 and t3 towards the top of the range. Vit d has a relatively short half life so needs to be dosed according to weight and taken everyday with vit k. And magnesium. I'll leave the comments about the testosterone to someone else who knows more but it doesn't make any sense to wait for it to be treated
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Advice on blood tests please
Research into getting T3 meds 
Endo Prescription - advice please
Minimum time on levothyroxine dose before testing levels
Results advice please.
