I'm currently taking 100mcg per day of levo plus 20mcg x three times a day of lio. I take the levo about 9.30 pm and the lio at 7.45am, 2.30pm and 9.30pm. This is prescribed on the NHS by my gp.
My latest bloods ( as posted before ) are Free T4 14.7 ( 11 - 23 )
Free T3 5.11 ( 3.1 - 6.8 ). My TSH is suppressed due to my taking T3 for the past 20 years.
I have not been well for over four years. My gp who is a senior partner has placed a note on my medical file - patient is severely over medicated but agreed can stay on same meds. This is based solely on my TSH being very low as my T4 and T3 have always been low in range. He clearly doesn't understand that T3 suppresses TSH and does not just lower it!! I live in a village where there is only one gp surgery so I can not move to another surgery.
I've tried twice recently to get an appointment to discuss my ever increasing thyroid symptoms and have not been able to get an appointment. I'm seeing a different regular gp on Monday. As I'm doubtful she will go against the senior partner, I have bought some 25mcg levo from abroad. I have done a lot of research and believe my T4 should be at least 20 and my T3 at the top or above the range. Will one tablet a day be enough to achieve this or will I need a bigger increase? If a miracle happens and the gp sees sense I will take what she offers!!
I'd appreciate any advice on how to increase my levo. Should I just take a whole tablet a day or should I cut it up and take less? Should I take it in one dose or split it?
In the last year, I've been referred to a urologist, a gastroentrologist, a dietician, a sinus specialist and now I'm waiting for a max face appointment following almost six months of continuous teeth ache originally diagnosed as sinus infection and now a jaw problem. I'm also really tired all the time, my weight has increased by 18lbs and I can't even stop it going up! For the past four years I've had absolutely no hair under my arms and unsightly splits in my eye brows - my inner eye brow hair grows regularly up to 1 and a half inches! I'm constantly going from one bug to another, far more than my husband and much worse and longer lasting than everyone else. To me it's so obviously a thyroid problem and not lots of different problems. Added to this every time I have another problem, I'm given more tablets which then cause more unpleasant reactions - currently diarrhea and very severe stomach cramps from Naxopren for my teeth aches! I just can't go on with no life and making everyone around me miserable.
P/s I have increased my Vitamin D tablets following advice here to 3000iu a day. I am working hard to get all my vit levels up from "normal" to high.
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If they're not optimal then I would work on that before increasing either of your replacement hormones.
When on combined Levo plus T3, we're all different where we need our FT4 level. Some are fine with it quite low in range, I need mine at around 75%, I also am best when FT3 is 75% (I take Levo plus T3), so you may not necessarily need a high FT4 and an over range FT3, it may be a case of optimising all your nutrient levels for your thyroid meds to work properly.
Hi, I worked out that my T4 is only 30% of range and T3 is slightly better at 54%. I think the fact that my T4 has been going down year on year and I've been getting more and more problems shows I need it to be higher than it is. I am getting a new symptom every week now - the latest is I feel sick all of the time. I am no longer able to use my exercise bike, which I've used for many years as my muscles are just too weak and I'm so tired.
I only have blood results going back under 5 years - surgery refused to disclose them prior to that. My T4 level then was just under 58% and I had quite a lot of symptoms - complete hair loss under my arms and some others.
I'm seeing a different doctor tomorrow, I'm going to beg for an increase in T4 and also ask to test my vit and mineral levels as they have not been done for a while.
I supplement on a B complex including Vit C, also on Vit D, magnesium and silenium. I have flax seeds for breakfast six days a week so I get over 8mcg of iron from that as well as zinc etc. I have an exceptionally healthy diet. While they may not be as high as I would like, I don't believe they're very low.
If the doctor refuses to test them, then I'll arrange it privately.
The problem is that my gp is treating me as if I was on T4 only. He says my TSH is very low and would go lower if T4 or T3 is increased!! He's refusing to look at, let alone consider my T3 or T4 results. He's a senior partner at the practice so his word is like God! I'm hoping the senior doctor, although not a partner that I'm seeing tomorrow will listen to me.
I live in a small village. There is only one surgery so moving to another is not an option.
As SeasideSusie says, we need to see results and ranges on vitamin D, folate, ferritin and B12
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to regularly retest vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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)
If/when also on T3, make sure to take last dose 8-12 hours prior to test
Assuming vitamins are optimal
Personally I would add 25mcg Levothyroxine alongside morning dose of T3 (i.e. Split the dose of Levothyroxine, 100mcg at 9.30pm and 25mcg at 7.3am)
Retest full Thyroid and vitamin levels privately 6-8 weeks later
(I find an 8 hour gap between the three doses works best .....7am, 3pm and 11pm.......)
Hi, thanks for your reply. I will try taking the increased levo separate to the 100 as you suggest.
As far as vitamins are concerned, I've been taking 1000 iu vit D for several years. My gp warned me about the dangers of over dosing if I took more. I now realize this is wrong and recently increased it to 3000 iu a day.
I have been taking a B-complex with folic acid plus vit C for seven or eight years.
My gp last tested my vits about 4 years ago. I will ask the doctor on Monday to re test.
My big problem is that I can't tolerate iron tablets of any kind. I tried again last week taking one x 25MG iron bisglycinate tablet. I was up all night as well as suffering all day with very severe stomach pains and diarrhea. I know that I should also increase my vitamin C beyond what is included in the B- complex but it irritates my bladder and causes me even more pain and discomfort due to frequent urination. I've been told that my bladder problems are caused by severe inflammation of the lining of the bladder which is caused by frequent urination. Vit C tablets aggravate this and make me much worse.
I was referred to a dietitian last year who confirmed that I have an exceptionally healthy diet - I'm vegetarian so I do get a lot of vitamins and minerals from my diet. I have considered going gluten free. I did try it for 7 weeks early last year. I felt no different and had no less problems. I travel to Germany regularly to visit my oldest son and there is no way I can be gluten free there.
I don't remember my RT3 or RT4 ever being tested. My TSH will always be suppressed due to taking T3.
As we spent almost £2000 last year trying to sort out my bladder problems ( and achieved absolutely nothing!! ) we don't have any more spare cash to spend on my ever growing health issues. Having just spent another £50 on buying more levo.
I know that I am much better and have a lot fewer health issues when my thyroid levels are higher. It took four years of major issues before I was finally diagnosed by a very kind gynecologist even though my thyroid levels were within range. My T4 has gone down year on year over the last four years - as far back as my gp would give me actual results. I have got worse year on year with new problems now coming almost every week.
I stop levo and lio for 36 hours prior to a blood test and resume them after the draw. However, my surgery only does routine blood tests after 10.45hrs. Because I get so hungry it is simply not possible for me to delay eating until 11.00 hrs after the draw. I'm usually up at 7.30ish.
Naxopren is only the latest tablet to cause me problems. I am really ultra sensitive to every thing. I often suffer for weeks after stopping tablets. I have read that this can be a sign of being under medicated. I really can't go on as I am. I'm tired, hungry and miserable all of the time. Walking is becoming increasingly difficult due to muscle aches in my thighs. I'm now finding it painful to eat - I can't chew food properly as it is really painful - my back teeth really hurt and I can no longer bring them together. I am also having a lot of trouble with swallowing. Food, particularly tablets seem to get stuck somewhere and I can't get them to go down. We have cancelled a couple of holidays and delayed booking even more and then not gone on them at all because of my being ill. My husband and I are retired and both really love travelling. We had a few years when we would go abroad for a month in the winter a couple of times and go away for a fortnight twice more in the year. It stopped four years ago because I can't take the hours of travelling as I'm so tired. I stopped driving three years ago because I was so tired and so many muscle aches, I did not feel safe driving. I expected to start driving again after a couple of weeks - I've not driven since.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
The reason I stop meds for 36 hours prior to blood draw is because an endo that I saw told me that I should. I was referred to him several years ago only because my gp at that time insisted I see an endo as I had not seen one for a number of years. By the time I saw him, it was over three months since I'd had my thyroid checked. He insisted I do a blood test whilst at the clinic. He then told me that he prefer that no thyroid meds are taken 24 to 48 hours prior to a blood draw but on this occasion he could extrapolate back to get the same result. I decided to go with 36 hours and have consistently done this since seeing him. Prior to that, the advice I had been given was that the blood draw should be in the afternoon and that no thyroid meds should be taken on the same day until after the draw.
Yes, my B complex does contain biotin and I did stop it for 7 days prior to the draw.
I have ordered an iron spray. It has very little iron in it but I can start with one spray and then hopefully increase it.
With regard to vegetarians eating liver - if you eat liver once a week then you are not a vegetarian! I guess it comes down to your reason for becoming vegetarian. I will not be eating liver - the very thought of it makes me sick. I've been vegetarian for over 40 years for ethical reasons and that will never change.
Advice on here and on Liothyronine guidelines from NHS is bloods should be early morning
No Levothyroxine dose on morning of test, until after blood draw
(If normally take Levo at bedtime this needs adjusting day before. So if for example doing blood test Monday morning. Saturday evening Levothyroxine dose is delayed until Sunday morning. Sunday evening dose delayed until after blood test Monday morning)
My endocrinologist advises T3 last dose should be 12 hours maximum before blood test
Most endocrinologists seem to want last dose T3 about 3-6 hours before!
"I have done a lot of research and believe my T4 should be at least 20 and my T3 at the top or above the range."
There is no "should" about these things tbh, you need the levels that are right for you, not what others may need. Some people do fine with a lower in range FT4 when taking T3, others may not; some feel over-medicated with a FT4 in the top quartile. Whilst I'm not a fan of bringing RT3 into the debate, I do wonder, with the other things going on, such as frequent infections and your jaw issue, what is your RT3 level; and whether you wanting to increase your FT4 and FT3 even if it takes the latter over range, will simply result in a reprioritisation of the conversion of your T4 to RT3, so you'd be no better off. I'd agree with SeasideSusie, that optimising vitamins and minerals might be the starting point, especially if the side effects of your Naxopren are impacting absorption/nutrition.
I know of a couple of food based iron tablets which might be more helpful for you.
MegaFoods Blood Builder
Garden of Life Vitamin Code Raw Iron
I can't vouch for whether you will be able to tolerate these.
As for Vit C, if you have been taking absorbic acid this may be a problem for you. Try a natural vitamin C such as acerola cherry powder, start with a very small amount and work up.
Hi, Thanks for that. I've ordered an iron spray - mostly because it's a small amount to start with and then hopefully I'll be able to build to a higher dose. I'm going to delay doing anything about vit C for the time being. Mainly, I don't want to do anything right now that might aggravate my very fragile bladder. Vit C will almost certainly cause me to pee more frequently and that will make my bladder inflammation much worse. I simply can't cope with that right now. The other reason is, I doubt my vit C is very low. I take 120mcg vit C with my B complex vitamin tablet daily. Also I eat a lot of strawberries, raspberries and blueberries as well as some other fruit. So I get a fair amount of vit C naturally. I've got a gp appointment on Monday morning. I will ask her to test all of my vitamin levels as they have not been done for some time. If she refuses, I will pay to get them tested.
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