I've recently been feeling great albeit struggle a bit to get up out of bed in the morning. As a result I told myself that the small dose of levo I take (50) was not needed. So I stopped it on my own steam and have steadily been sliding into hell. I spoke to my gp Monday and she was not impressed with my actions- understandably. I recognise that regardless of dose it appears I need it. Can I double up dose for a bit or just going to have to ride it out until things stabilise again? I've been on the same dose since May 2019. Also given my most recent results would I actually have been better to increase dose a little?
Most recent results in April were:
TSH 2.78 (0.27 - 4.2)
Ft4 14.8 (12 - 22)
Ft3 3.9 (3.1 - 6.8)
Ferritin 49
Folate 21
Vit d 78
B12 150
I have coeliac disease so monitor vit and Mineral levels regularly. Also recently just recovered from gallbladder surgery.
Just to reiterate I know stopping my meds was very very stupid.
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Moog77
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I have done the same and made myself very ill so you are not alone.Afraid you have to build up again in 12.5mcg or 25mcg increases.
50mcg is an initial dose and you are correct in thinking that you really needed an increase. Usually we look to TSH being around 1 as a rough guide and the thyroid hormones FT4 and FT3 being over halfway through their ranges. Then it is a case of how you feel.
I need to get stable and go back to gp to see if we can increase meds. They were quite happy with those in April and go with the 'in range' numbers. I'm happy to fight my corner. There is a younger doctor in the surgery that I'm going to approach regarding this as she seems fairly forward thinking.
I don't think you should double up, just go back to the dose you were taking before you stopped.
Most recent results in April were:
TSH 2.78 (0.27 - 4.2)
Ft4 14.8 (12 - 22)
Ft3 3.9 (3.1 - 6.8)
These results show that you were undermedicated at the time. The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well. NICE guidelines show that TSH should be no more than 2.5. So your TSH is too high and your FT4 is only 28%through range with FT3 just 21.62%through range.
Start back on your normal dose and retest 6-8 weeks later, then see where your levels lie, you may then need to increase your dose, retesting again 6-8 weeks after any dose change.
When testing thyroid we always advise :
* Test no later than 9am to give highest possible TSH
* Nothing to eat or drink except water before the test
* Last dose of Levo 24 hours before the test
* If you take Biotin or a B Complex leave this off for 3-7 days before the test as it can cause false results when biotin is used in the testing procedure (which most labs do).
Ferritin 49
Presumably the range is 13-150.
Ferritin is recommended to be half way through range so about 82 with that range although some experts say that the optimal Ferritin level for thyroid function is 90-110ug.
You can help raise your level by eating liver regularly (no more than 200g per week due to its high Vit A content), or liver pate, black pudding, etc.
Folate 21
Probably OK but no range given.
Vit d 78
The Vit D Society and Grassroots Health both recommend a level of 100-150nmol, with a recent blog post on Grassroots Health recommending at least 125nmol.
B12 is active but the range is 37.5 - 188. This is an odd range as I have always worked from a range of 120 - 500.
When I was diagnosed my results were:
Tsh 7.78
Ft4 15.9
Ft3 5.6
These were taken early evening - not ideal I know but was the only time I could get a blood draw (private test). I think that the TSH result has always stuck in my mind as being 'false' as it wasn't done early morning on empty stomach.
Being gluten free has made a HUGE difference to my health but I'm still not quite 100%. I think my thyroid is the missing piece. I feel so rotten just now I can't tell you - I think I should have perhaps come here to post for some feedback from fellow thyroid folks before doing something so stupid.
Folate is recommended to be at least half way through range so 35+ with that range, you are a little on the low side but it's not dire.
B12 is active but the range is 37.5 - 188. This is an odd range as I have always worked from a range of 120 - 500.
Active B12 is a different test from SerumTotal B12 which has the wider range. The Active B12 range is always much narrower.
Total B12 measures the total amount of B12 - bound and unbound. Active B12 measures just the unbound which is free and available for the cells to use and is said by some to be the better test. You have a very good Active B12 level.
I think that the TSH result has always stuck in my mind as being 'false' as it wasn't done early morning on empty stomach.
If you scroll down this page to the first graph, you can see how TSH varies throughout the day, you can see how a blood draw done at, say, 6-7pm is quite a bit lower than if it was done at 9am:
Oh. .....I'm gobsmacked at that. Now I feel even more stupid!
Looks like I do have a thyroid problem then! Quite common with coeliac disease.
I try to keep supplements for folate and ferritin and vit d as when I was diagnosed with coeliac a few years ago the specialist said he had no idea how I was walking around with the levels I had. Looks like I need to keep on top of these.
TSH is highest early morning and lowers throughout the day. For a diagnosis of hypothyroidism TSH has to be high, and when we take Levo and are tested then if we are looking for an increase in dose or want to avoid a reduction then we need the highest possible TSH, hence the advice to test no later than 9am.
Certain foods can lower TSH and caffeine containing drinks may affect TSH, so we advise nothing to eat or drink except water before an early morning test for the highest TSH.
Yes, it does look as though you are hypothyroid. And you are not likely to have that change.
We all get a real shock once diagnosed, but you really need to accept that fact and work on getting your meds right. Increase Levo gradually though. Not more than your body can take at any one time.
Good luck and you are in the right place, believe me.
I'm just shocked at how ill I feel. I didnt feel this bad before diagnosis!
Nausea, dizzy, total exhaustion, anxiety and really bad nightmares as a result. Struggling to eat as well. Hot and cold. It's like my body has switched off
Hope you feel better soon, I have never tried to give mine up, because I had nothing to replace it until a year ago. I wouldn't have had the nerve to try it.
Don’t beat yourself up about it- you tried and now you know it wasn’t the answer. You can move on restart the 50mcg and eventually up the dose at 6-8 week intervals until you feel better. It’s not natural to take tablets every day to survive, but this is the situation we find ourselves in. Hope you feel a lot better soon.
Many people find different brands are not interchangeable
Yes you will need dose increase, but get back on 50mcg everyday for at least 6 weeks minimum before getting retested
Get weekly pill dispenser, so it’s easy to see if missed a day
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)
What vitamin supplements are you currently taking
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Retest thyroid and vitamin levels 6-8 weeks after each dose change or brand change in levothyroxine
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).
Come back with new post once you get results
Likely to need further increases in levothyroxine over coming months
Aiming for Ft4 in top third of range and Ft3 at least half way through range. Frequently TSH will be around or below one when adequately treated
Guidelines on likely dose levothyroxine eventually required is approx 1.6mcg levothyroxine per kilo of your weight
Given the doseage by weight I'm definitely not on enough.
I take the same brand all the time but have been lax in the time i take levo and in regards to food. I need to tighten up on this and take control. It appears my thoughts that I don't have hypo is completely utterly wrong.
Just to let you know that whilst some people have to be strict about which brand they take, when they take their tablets and taking them on an empty stomach, there are some people like me who don't have such a hard time of it. Any brand seems okay to me and I usually take mine with my breakfast but it doesn't matter if I'm a few hours either side. If I miss a day, I do notice. Some people don't though. We are all different and I am lucky.
I once asked the doctor to reduce my dose. He reluctantly did, but after a month I went back to my usual dose. It is understandable that you might have thought you didn't need it.
healthunlocked.com/thyroidu... you will feel better if you read my post about what I did. Don't keep going over what happened. It is what it is. Now it is time to be proactive with blood tests and educating yourself through the posts on this site so you can fight your corner with the GPs.
Haha, you're not alone. I've been struggling to put on weight so decided to cut my dose from 125ug/day to 100ug/day and felt no difference until my next blood test showed that TSH had soared and a big lump appeared in my neck, presumably an enlarged Thyroid gland struggling to synthesis more thyroxine! I simply resumed my normal dose and within 2 weeks felt normal again. I strongly advise you against "doubling up' your dose. Just return to 50ug and you'll be fine
It is all very well suggesting the original poster should see an endocrinologist. But many here have never seen an endocrinologist. And would be unlikely to get an appointment. Hypothyroidism is usually regarded as a GP-managed issue and endocrinologists (or administrative procedures) often reject requests for consultations even if you get a GP to request one.
Further, even if they were granted a consultation, the time from now to then could be many months.
I think that you have a rose-tinted view of endocrinologists; I’m sure that you’ve read many a report of these ‘gods’ failing to understand thyroid issues. ‘…never self medicate…’ is a bit strong. It is certainly not recommended but some prefer self-medication to disability and an early death; the choice is no choice.
I dont appreciate your comments. Ive had the same endocrinologist for 22 yrs. She is also a teaching professor and has an mbe. I am allowed an opinion and thats it. I am also disabled with another auto immune disease. I trust my medical professionals even if you dont.
You are very lucky to have an endocrinologist whom you trust, the MBE and being a teacher professor are not guarantees of knowledge of the best patient-centred treatment but obviously reassure you. The fact that she works for you is fine, other endocrinologists have fallen short as related by many comments on this site. My comments were not for appreciation or otherwise; they were a statement. You are free to have an opinion, as am I, as are all, whether I agree or not with your opinion, or vice versa, is immaterial. Good luck to you and your endocrinologist.
of course your opinion is valid, but perhaps it might attract less controversy if in future you include the information that you have found a good endocrinologist who you are happy with. If you just suggest to people that they trust ANY endocrinologist to put their mind at rest , then many people will not have as helpful an experience as you have with yours.
And inevitably every time you write that comment, anyone with a less good Endo experience than you , or who has been refused access to an NHS endocrinologist , or who can't afford to see one privately, will feel the need to clarify your comment to take this into account.
I dont feel the same way about sharing my private information. I will not be sharing it. There is no need for anyone to clarify my comment. It was just a comment
I have only ever been given Levo by my GP's. My GP won't refer me to the NHS Endo who I would like to see.
Last year I had to source and buy my own T3 online. My GP was not at all helpful when I told him that I was going to trial it myself. He said T3 was an illegal drug! Complete rubbish.
I don't know whether I would be alive now if I hadn't been able to find T3. I was in ICU in June 2018 after I tried to kill myself and I had been on anti depressants for around 4 years by then. I truly couldn't have felt worse.
I would have preferred to have had my GP behind me when I first tried T3, but he just wasn't willing to help me in any way. So I had no option but to go it alone.
I too have had hypothyroidism since 1999. Im not going to keep saying the same thing over and over. In my opinion she is hest to see an endocrinologist and not self medicate.
Well, yes I was alone and I am still having to go it alone unfortunately. There are others the same who can't get an appointment with an Endo. It isn't fair, but it is a fact.
Based in the fact that the half life is so long and it is accepted practise for some to take weekly t4 (those who dont take medication reliably in the past), and the fact that you are not all that hypo..like your TSH is not over 100..yes it is safe and personally I would double up for two or three days , then 1.5 times ie 75mcg for the rest of the week..then back to your usual dose. If you don’t and just take your usual dose then that is fine too it will just take you a few days longer to reach your optimum level. It takes6 weeks of meds to asymptote (level out at your optimum) but you also have to factor in your bodies usage and storage. It appears your store were not too much lowered. Dont forget every call in your body stores thyroid hormones in the cell membranes. Personally last time I stopped I went over100 .. so not too bad:). Btw my reply also accounted for your not to badly low Ft4 levels as well.
OTOH your Ft4 and TSH aren’t that low really for 4 weeks off….like I said..in 3 weeks I go over 100…so maybe you could wait a few weeks and retest and see if your body can make the thyroid hormones and lower the T S H and raise the T 4 by itself.. it is possible at those levels provided an ultrasound does not show thyroid tissue destruction or your thyroid has not been destroyed by radiation or removal or antibodies etc. If say you have been exposed to higher than normal amounts of iodine ..eg with a C T scan this is a totally normal level and will correct itself..or if your selenium levels are too low etc. so why did you feel you May no longer need the 50mcg.? There are a lot of factors
Im Just a patient who unless on prednisone tends to have unstable levels of thyroid hormones… not medically qualified.personal experience and applied maths to the science only
My numbers are not reflective of bloods after not taking my meds. They are results from April this year whilst medicated and the results that I had when originally diagnosed back in May 2019.
I can’t imagine that doubling up will make you feel good, not sure but instinct tells me that you may need to start on a low dose again. Either way I hope you begin to feel better soon.
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How do i explain to my gp and get my dose increased
How would I know if my levothyroxine dose is correct, my feet are so terribly cold as are my hands.
