# Help with levothyroxine dosage



## wishmeluck (Apr 28, 2016)

About 2-3 years ago i started suffering with dizzy spells, severe fatigue to the point working even 20 hours a week from home is difficult when i was used to doing 40+. I often need to go back to bed within a few hours of getting up after sudden extreme tiredness from time to time. Maybe 2-3 times a year it gets bad where i spend 1-2 weeks mostly in bed or slouched on the couch feeling terrible, suffer arrhythmia's, dizzy spells, anxiety from time to time and even fainted once. Once they pass i generally get better but again struggle in general and am always tired. Also i rarely get asleep before 4-8am even if i go to bed at midnight-2am because im too tired to work but obviously not tired enough to sleep. Also have dry skin, itchy ears, dry scaly inner ears from time to time and during some seasons im much colder than people around me (wearing coat and hat indoors when others are in tshirts or jumpers) but im not always cold

Got several blood tests and always told they were fine or i had one or two borderline ones that i just needed to keep an eye on. One time my thyroid was in the 5.x region, explained to the endo about all my symptoms/problems and they said try losing weight and then well review in 6 months. Fast forward about a year and i got another terrible episode, this time with diarrhea on an off for several days and nausea which were new symptoms but no dizziness or arrhythmia but i did get anxiety and extreme fatigue. This time i booked an appointment with a specialist that deals with unexplained illnesses but since it was going to be a week before appointment i went and got bloods done locally while i was still feeling crap as i knew i might be better in a week.

This time my TSH was 10.9. I got those results the same day i was seeing the specialist, he took the TSH again along with free T3,T4 and both antibodies. This time the TSH was back down to 5.x even though i had taken absolutely no medication between the first test and 2nd test which were probably no more than 10-14 days apart. I was feeling better by the time of the 2nd tests but still not great.

My Vitamin D was 24 in first test and 17 in 2nd test. In the first test my testosterone was in range but this time around the private doc said it was low (i am waiting on blood test results to get exacts) and we also done saliva tests for cortisol levels which he said was high. My fasting insulin was also very high this time but not on the first test.

So i started taking levothyroxine a few days after my 2nd blood test initially 25mcg, nothing after a week, still felt crappy. My local doctor (who is working on my TSH the private doc is working on all the other stuff) said wed try and increase to 50mcg, after about 4 days nothing so i came across some stuff on the internet saying try taking it at night. At the same time as trying it at night (at least 2-3hrs after my last meal) i increased it to 75mg. Within a day boom, i woke refreshed like i never had before, i just felt so refreshed and full of energy. After another couple of days i upped it to 100mcg and ive stayed on that since. While i wake up completely refreshed and feel like i have much more energy i still get incredibly tired half way through the day also when i take a nap instead of still been lethargic i do seem to have more energy. However over the last 3-4 days when i didnt get great sleep due to having to get up early several mornings in a row for appointments im finding ive less energy again and am less refreshed after a nights sleep but maybe its because of the early mornings which im not used to.

Problem is i am not so sure if i should keep increasing the dosage. tbh i haven't a ton of confidence in my local doc because he just seemed happy to treat with levothroxine and not dig into the other thyroid tests so i get the feeling like so many other docs out there that since my levels are back in so called normal range (5.x) that hell just say stay on that dose when from what i read people who have dealt with these issues and got results tend to aim for 1-2TSH range. The other thing im concerned and confused about is if TSH didnt show up over many tests (although im not sure if it was high but within range) over the past couple of years when i've felt like this and TSH was 5.x and 10.9 within 2 weeks without taking any medication it seems both prone to fluctuation and also an unreliable way to determine symptoms. The other thing im confused about is how long i need to wait before i see any results. Should i increase to 125-150mcg for 1-2 weeks or should i stay on 100mcg for 4-6 weeks and do the blood tests. I was hoping to just keep increasing by 25mcg and leaving it a week to see if i have improvements but im worried if i do that and it takes 4-6 weeks to kick in then all of a sudden in 4-6 weeks i could overdose and start going hyper instead of hypo.

While i could change my doctor, he is overall a very good doctor and the specialist i seen for all the other tests is after costing me nearly 1k already and im pretty much out of funds for more specialists. I dont have health insurance and i think im on the right track with treating the hypo just really about getting the right dose. My specialist also has me on a ton of vitamins to help me increase my acid (bethain, and VN enzymes), stablize my insulin levels, increase the vit D, plus multivitimans plus im on a good diet now of fresh meat and mostly greens which is helping a ton with the cravings and feeling very tired after meals. His overall opinion was he thinks my stress levels are playing havoc with my hormones on top of the hypo so he wants to try and stablize my insulin, get the right dose for the hypo and review my Vitamin D, insulin, testosterone and Thyroids in a few weeks.

I am sorry i dont have specific blood test results, im working on getting both my old ones from last couple of years and recent ones so i can analyze the key ones over that time especially curious if my TSH was always high (above 3) but still within the accepted range of 5.x or whatever it is. Also find it weird how testosterone and insulin were high and low in one test and a week or two earlier they were in range. Makes me wonder if i can trust blood tests if they are fluctuating so much, i almost feel like if i done 7 blood tests over 7 days id get different results.

Anyway i realize i rambled quite a bit but i wanted to try and give as much background but my main question is from people with experience how would you recommend finding the right dose and how long does it take to kick in. One other thing, since i started sleeping better and waking up refreshed my eyes are watering terribly, both eyelids are stuck together completely in the morning and all day long my eyes are watering both in and outdoors. Not sure if thats just a touch of hayfever and coincidence or a side-effect of the levothyroxine.


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## Lovlkn (Dec 20, 2009)

Welcome to the board!

Actual lab test names, results and ranges will help us help you.



> curious if my TSH was always high (above 3) but still within the accepted range of 5.x or whatever it is.


A TSH of 3 would tend to be hypo, it would be best to have TSH, FT-4 and FT-3 all run at the same time as the FT tests show unbound thyroid hormone in your system at time of draw, while TSH can lag up to 6 weeks and is more diagnostic.

I don't know what 5.x range means?? Most doctors feel if you are within range then you are "normal". We like to see a TSH of closer to 1 and FT-4 and FT-3 pushing 3/4 of range.


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## GandKsmommy (Feb 15, 2016)

Did your dr test for antibodies? hashimotos can cause tsh fluctuations like that. Do you have your free t4 and t3 results? Is your dr telling you to up your medication like that? It usually takes at least 4 weeks to see how a dose will affect you. Ideally you should wait 6 weeks. My tsh was almost 21 at one point and my dr raised me from 100 to 125 mcg and it took a good 4 weeks for my tsh to go down to .79. I know this because I was tested 2.5 weeks after and my tsh was in the 4 range. Also, I had my thyroid surgically removed. Increasing vitamin D should help. How is your ferritin? Lastly, low testostErone can mimic low thyroid. Good luck, I hope you feel better


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## WhatHappened (Nov 12, 2015)

You are right to be concerned about self dosing. It is hard to say what the right dose should be without labs, but this disease takes patience. It takes time for the med to build up to appropriate cobcentrations. Tsh, t4, t3 all have different half lives. It takes about 6 weeks for the med to reach max concentration and effect.

I strongly recommend you only do that under the care of and in partnership with your doctor.


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## wishmeluck (Apr 28, 2016)

Thanks guys, i'm on 100mcg now and I've been on that for close to a week. I rang the doc to see if i should drop back to 75mcg and he said since i'm not getting any side-effects like eye swelling and it has improved my sleep to keep on the 100mcg and in 1 months time well do another round of bloods and see where i am. I have done no tests since my first test results of 10.9 and 5.x which were about 10 days apart and both taken before i started medication. Basically i started off on 25mcg after 1 week still felt crap, he said to increase to 50mcg and well see how that went and would consider going to 75mcg if no effect was seen which there wasnt, then i moved to 75 and 100mcg myself but i incorrectly got the impression that i should just increase until i feel well and then wait 4-6 weeks rather than try a dose, wait 4-6 weeks and see how i feel and what the tests return so basically ive been aggressive and went to 100mcg quickly, hopefully i wont all of a sudden swing from hypo to hyper in 4-6 weeks time when it fully starts to kick in.

I did get my antibodies done and the doctor didnt mention anything. He is a specialist that deals with thyroid issues and knew to test the T3 and T3free, antibodies etc (local doctors never done anything other than TSH and T4) although he didnt do reverse T3, i assume thats only done if something in the initial test hints there might be an issue converting. In any case he never mentioned anything about problems with the antibodies in the discussion but i have requested the results and will post them as soon as i have them along with the other hormone levels


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## wishmeluck (Apr 28, 2016)

Do any of you guys think going straight to 100mcg is risky? Maybe i should cut back to 75mcg or 50mcg or is it rare that so low a dose works?


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## Lovlkn (Dec 20, 2009)

As long as your doctor knows you are on the 100mcg - since you say he has all the test results, if he felt it were too much he would tell you not to take it.

Be aware of hyper symptoms such as anxiety and elevated heart rate, inability to sleep and feeling restless, changes in BM's, etc. If you experience them call, have a lab and ask to be reduced.

What does this mean?



> 5.x


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## wishmeluck (Apr 28, 2016)

Funny enough anxiety,palpitations,arrhythmia's,inability to sleep, diarrhea are all symptom i have gotten over the past 2 years when I've been battling fatigue and ive even collapsed and been hospitalized from bad dizzy spells and resulting anxiety and palpitations but the blood tests always showed normal or borderline until recently, most recently when i was around 10.9 TSH i had diahorrea, severe fatigue, nausea, headaches and anxiety so i guess a lot of the symptoms of hypo and hyper are similar or maybe for some reason im getting a bit of both symptoms. Since ive started taking 75-100mcg instantly my sleeping improved ten fold and i feel so much better after awaking and also much easier to get to sleep but fatigue is still there but i guess i just need to wait a few weeks for them to kick in fully for that and then possibly a few months tweaking.

Regarding 5.x what i meant is on the blood tests at least here in Ireland the upper range i believe is around 5, im not sure exactly what the number was so i was saying its 5.x where x is the decimal value like 5.1, 5.2 etc. I might be slightly off and its more like 4.8 but its in and around that. I realize that this is old science and there is newer ranges but the labs apparently dont reflect that and i assume the typical GP will also go by that guideline.


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## Octavia (Aug 1, 2011)

My gut feeling is that 100 mcg is going to be too much for you. Although a TSH of 10 is high, it's likely not high enough to justify a dose that high. You might want to back off of that dose and stick with 50 micrograms for 6 weeks, then get re-tested.


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## wishmeluck (Apr 28, 2016)

Thanks Octavia, it actually dropped to just over 5 within a week or 10 days with no medication whatsoever (done additonal blood tests with another specialist within a week of the first 10.9 reading) so if your gut was saying 100mcg was too much at 10 then i bet its certainly high for half that. The trouble is my doctor seems to be only concerned with how i feel now, once i told him ive been on 100mcg for almost a week he asked have you gotten any reactions since going to 100, any eye swelling or sever pain in my eyes and said if i was feeling better and i wasnt having any major side-effects then it made sense to stay at 100mcg but i would be interested to hear a few more opinions based on your experience


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## wishmeluck (Apr 28, 2016)

The reason i was initially anxious to increase the dose is i have been struggling to get enough work in and by the time i get through with work for the day i am too tired to do anything more than usually go to bed or more often i end up working for a while, sleeping for 3-4 hours in the middle of the day and then working again for a while at night. This leaves little or no time for me to spend with my young baby which is really tough and also getting less hours in is a financial strain too so i was eager to just get to a dose thats having an effect but i realize everyone here is probably in the same boat, have families and/or busy schedules so maybe taking it slow does make more sense rather than being totally whacked and unable to work in a few weeks caused i went too high


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## WhatHappened (Nov 12, 2015)

As a father of (young) twins, let me tell you, you need to be around long term. The lost time now is painful, choosing between work and family and friends (providing takes so many forms), but it DOES get better. Energy and time management helps. Personally, I'm afraid you're swinging so quickly between doses so quickly. It seems that your Dr is concerned you'll go hyper.

I like octavia'so plan. Each week will feel a little better, then test again, and adjust.


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## Lovlkn (Dec 20, 2009)

New mother = crazy thyroid in some cases.

Determining what T4 hormone dose you should be on without any test result other than TSH is impossible to shed opinion on.

You should never adjust doses without first having a lab to include TSH, FT-4 and FT-3. If you are having issues with a dose, having a lab after four weeks is usually enough to give a good indication of where you are during the adjustment process to adding thyroid hormones.

Because you are having crossover symptoms it is really important to have both the FT-4 and FT-3 labs because your hypo TSH is not revealing enough information for us to shed opinions.



> blood tests always showed normal or borderline until recently


You really need to get copies of these labs. "Normal" in a doctors eyes means "in range" and a range for TSH that goes as high as 5 actually an outdated test. Many labs continue to use this test - the new top range is closer to 3 and I have seen some with a 4.

Have you had Ferritin, B-12 tested? Being low in both contributes to a fatigued feeling.

What are you taking to address your low D?

One thing to note when taking a T4 hormone is to take it at least 4 hours either side of supplements containing iron or calcium.

What is your actual diagnosis from your doctor?


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## wishmeluck (Apr 28, 2016)

Just to confirm, i'm the Dad  not the mum but the baby is over 1 year old now.

I am still waiting on my latest blood results which has the full thyroid profile including antibodies but first here is the basic one from my local GP. This was the first one that was well above the norm and taken at a time when i felt really terrible at the time

30th March 2016:
TSH: 10.67 (
Free T4 9.6

Vitamin B12 247 ng/l
Vitamin D 29 nmol/l
Ferritin 129.5 ug/L

Some other values above norm were:
ALT 54 U/L
Cholesterol 6.05 mmol/l
Triglyceride 2.28 mmol/l

In a test on 5th March my TSH was around 5 and subsequent tests revealed testosterone low and insulin very high plus my cortisol levels were high but i dont know any specific results, i hope to have these tomorrow and will post.

Over the past 2 years ive been getting dizzy spells, palpitations, arrhythmias, anxiety and extreme fatigue, i was living abroad at the time but i managed to get all my blood results and those only have TSH, T4 and T3 so i will post those results below along with any that showed out of range. Not sure what it means but my Neutrophils is always bordering on the max of the range or else higher than the range and my Eosinophils, Lymphocytes and Basophils always bordering on the lowest of ranges in all my tests but not sure if relevant or not but said i would include those in case they were. There was one other test in 2015 which had a TSH of over 5 but the endocronologist said just to keep an eye on it that being overweight can cause it to go that high, i dont have that test as it was with a private doctor.

I guess the latest test with the antibodies is probably a more important part of the puzzle but i included the older stuff just to give an overall picture.

*4th March 2015*
TSH 3.9
Free T3 5.0
Free T4 16.2

*3rd August 2014*
Neutrophils 68.8 (34.0 - 67.9)
Eosinophils 0.7 (0.8 - 7.0)

TSH 1.8
Free T3 4.2
Free T4 15.6

*6th July 2014*
Basophils 0.1 (0.2 - 1.2)

TSH 3.1
Free T3 4.2
Free T4 17.1

*28th June 2014*
Neutrophils 77.0 (34.0 - 67.9)
Lymphocytes 15.8 (21.8 - 53.1)
Eosinophils 0.6 (0.8 - 7.0)
Creatinine 57 (62-106)

TSH 2.7
Free T3 4.5
Free T4 16.7

*25th June 2014*
Neutrophils 81.0 (34.0 - 67.9)
Lymphocytes 12.4 (21.8 - 53.1)
Eosinophils 0.6 (0.8 - 7.0)
Basophils 0.1 (0.2 - 1.2)

And my local GP didnt really give me a diagnosis other than to say we need to treat my thyroid and get it back under control. The private doctor im working with who discovered my testostorone was low, along with my vitamin D and my insulin and cortosol being high believes its only a matter of time before i become diabetic because im insulin resistant. Ive since addressed this by focusing on fresh food, low GI foods (and cutting out diary and gluten which i decided myself from reading around) and this private doctor has me on a ton of vitamins heres the list i can get actual dosage if needed.

With first meal

1 x Gymnema

3 x Multithera

2 Vitamin D (1000 mg)

2 Bethaine HCL

1 VN Enzyme

2 x Jarrow DHA

1 Magenisium

With later meal

1 x Gymnema

3 x Multithera

2 Bethaine HCL

1 VN Enzyme

2 x Jarrow DHA

1 Magenisium

Ive rolled back to 50mcg based on the advice here and probably just coincidental but im having trouble sleeping again, once i went to 100mcg my sleeping instantly improved but like i said it could be coincidence.

p.s ive read about thiaminine been great for people with thyroid issues in particular with helping with the fatigue. Can anyone recommend it or anything else that was key in helping?


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## jenny v (May 6, 2012)

When you get your latest labs, please be sure to post the range with each result. It's hard for us to tell a lot accurately without those ranges.


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## wishmeluck (Apr 28, 2016)

Will do reason i left the ranges off those thyroid ones above is the ranges are the old ranges, so for example here in Ireland the range is: 0.34 - 5.6 for TSH and 8.4-19.3 for Free T4.

I was abroad when all those thyroid tests above were taken however the range over there was: 0.27 - 4.2 for TSH and 12.0 - 22.0 for Free T4 and for reference the T3 range was 2.8 - 7.1. And from what i read the general consensus seems to be the new ranges from the US endo society seems to be the more accepted ranges however i dont know the exact ranges but think the max is around 3.

I will put the ranges with my latest labs but its likely going to be different to the ranges i just mentioned since it was a different country.


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## wishmeluck (Apr 28, 2016)

Ok im not sure these will be much help, seems like these latest blood results were missing Anti-thyroglobulin and Free T3 but here is my results

TSH 5.69 (0.27-4.2) It was over 10.67 a week earlier

Free T4 12.3 (12.0-22.0) it was 9.6 a week earier

Anti TPO Ab 0.25 (<5.61)

I dont see any Anti-thyroglobulin results however i do see Sex Hormone Binding Globulin which is 23.3 (16.5-55.9) but dont think thats it.

*Here is a list of other things that were out of whack*
Testostorone 6.0 (8.6-29.0)
Insulin 31.4 (3-25)
Vitamin D 17.5 (30-125) was 29 a week earlier
urea 8.0 (2.1-7.1) was 6.35 a week earlier

*Others not out of range but maybe of interest*
Ferritin 213 (30-400) was 129 a week earlier
B-12 379 (179-771) was 247 a week earlier
Folate 5.3 (3.5-16.0)

Does the fact that i have low Anti TPO mean i dont have Hashimoto's and its a waste of time testing Anti-thyroglobulin. Is it useless trying to analyze the results without T3 or is there anything obvious we can tell from the numbers i do have?

I have another round of blood tests in 2 days time, given the current results which ones would you guys recommend i do, im paying for this privately and cant really afford it so i dont want to pay for ones that are likely not to help but if they are critical i dont mind paying for them. What about reverse T3 is that something you get after other levels are out of whack or good to get?


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