I was diagnosed with an underactive thyroid 7 weeks ago (TSH 3.55) and was put on 50ug of Levothyroxine. In the subsequent 6 weeks I had started to feel better(less tired and lethargic) but still had bad muscle pain especially in my legs.
I had a second blood test after 6 weeks (TSH 2.48) and the doctor was going to keep me on this dosage but I asked for it to be increased due to the leg muscle pain. After 1 week on 75ug I feel worse(tiredness and lethargy) than I did originally. Is this to be expected ?
I intend to keep going with this dosage until hopefully things stabilise. I have read that one has to be patient with this medication
Any comments would be much appreciated
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Blokey151263
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If your TSH was 3.55 was that within normal lab range? What about FT4 and FT3? Could you post results along with lab ranges please? Also, post all vitamin level results if tested and thyroid antibodies. We really need the full picture to comment.
It is early days yet and you still have a way to go with your Levo dose. The aim of a treated hypo patient 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.
Muscle pains can be due to low nutrient levels. Ask for Vit D, B12, Folate and Ferritin to be tested. Optimal levels are needed for thyroid hormone to work.
You mention that a treated hypo patient usually has a TSH reading of less than 1. My doctor has not asked me to make an appointment for a further blood test after increasing my dose of Levo to 75, he just stated my results were now in the 'normal range'
I guess he will need guiding ... What would you suggest? Also there was no mention of FT4 and FT3 readings
Unfortunately, doctors are quite ignorant about thyroid disease and think that getting back into range is enough for you to feel well, not so unfortunately.
Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing Dionne at tukadmin@thyroiduk.org print it and highlight question 6 to show your doctor.
As TSH is not a thyroid hormone, it is a pituitary hormone, it is useful for diagnosing thyroid disease, that is all. The pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
Once on thyroid hormone replacement, TSH is not useful, it's the actual thyroid hormone levels - FT4 and FT3 - that tell us what is going on.
Thank you for this information Susie,I'll have a read and carry on with the 75 mgm of Levo and vit d supplements for another 4 weeks and then go back to the doctor if I still feel bad.
I have found this a very useful forum, as the scenario seems to be, you feel ill you see a doctor for about 15 seconds and then are left to get on with things hoping for the best.
After I was diagnosed with an underactive thyroid I was started on 50mcg Levo and took this for 6 weeks after which my symptoms had improved slightly. The dosage was then increased by my GP to 75 mcg and I took this for a further 6 weeks.
I was beginning to feel like my old self again until about a week ago, when the cold feet, aches, tiredness started to get worse again. Today I upped my dose to 100mcg and will wait and see what happens over the next 6 weeks.(GP says in range at 75mcg TSH =1.97 and will not test FT4)
My question is, is this typical that you go though a cycle of feeling better/worse until finally you feel OK when you are on the right level of medication?
I would try and work with 50mcg for a good while and let the body adapt to this amount.
Have you paid any attention to the vitamins and minerals ? What is your Vit D level. Aches and pains can be caused by low levels.
Keep receiving the 75 from the docs, but just store them up. Then try again going up to 75. I would try another 4 weeks on 50 and start adding in a good multi vitamin and mineral. Biocare do a good one. Also look at specific vitamin D tablets as an extra top up.
My vitamin D level was low when I was diagnosed (don't know the reading) and my doctor put me on a dosage of 20,000U twice a week for 6 weeks. He has now changed this to 800 units every day for the next few months as I presume the level had come back up.
When you say work with 50mcg for a good while,are we looking at a month or 2 months?
I would try 4 more weeks on 50, but in that time mess around with the vitamins and minerals to see if these help in any way.
Then try an increase again. If you feel rubbish again drop back down. I have experienced this myself over the years and you do not want to be forcing higher doses when the body cannot cope with them. It doesn't like it for a reason. What that is exactly is hard to say. But in time the body can get used to x dose and is then receptive to an increase. You may look at doing 50/75 alternate days so the increase is actually 12.5mcg per day higher.
The vit D sounds like it is the main issue regarding the aches, so you need to find out your blood level now to see what supplementation has done for you. 800 units is quite low per day. Maybe a 2000 IU tablet would be better per day, but it depends on your levels now. This needs looking into a bit more before you start messing with the thyroid levels.
I have persevered with the 75mcg a day as I have started to feel a bit better over the last week, However during a typical day I can feel quite well i.e.not much lethargy and muscle pain/foot pain to feeling very tired and low. Is this usual in your experience?
Also I have found out my Vitamin D was 21.5 ( I presume ng/ml) on the 13th April and have been on 40,000 IU/week for 7 weeks followed by 3 weeks on 800 / 1600 iU/day (Have started taking an extra tablet off my own bat)
I have made an appointment to see my Dr in 3 weeks, and was wondering what approach to take with him if I have not improved further.
I would look at bedtime dosing if you haven't tried it.
The tiredness can come into the body during the day due to probably not enough fuel in the tank (T4). But you don't want to throw too much wood on the fire as the body cannot often cope with this excess fuel. So just be patient and increase slowly over time.
You are getting some positive signs so this has to be applauded and built on.
I would look at a private full thyroid check to see where your FT4 and Ft3 is. The TSH is not the best guide on treatment. Medichecks do a test and it is about £80. Certainly worth doing.
You also want to see where your vitamin D level sits now. Are you in the sun much of the day ?
You really need to make the effort to go in the sun and get your top off or wear some shorts. The sun is your friend and natural sunlight is much better than tablets. We all really need to make the effort to be in the sun in the summer time. So many people don't do this. Office work is often the main thing stopping people getting in the sun, but it is key. I often work outside and i feel so much better in the summer compared to the winter. All down to the higher Vitamin D levels i imagine.
After I was diagnosed with an underactive thyroid I was started on 50mcg Levo and took this for 6 weeks after which my symptoms had improved slightly. The dosage was then increased by my GP to 75 mcg and I took this for a further 6 weeks.
I was beginning to feel like my old self again until about a week ago, when the cold feet, aches, tiredness started to get worse again. Today I upped my dose to 100mcg and will wait and see what happens over the next 6 weeks.(GP says in range at 75mcg TSH =1.97 and will not test FT4)
My question is, is this typical that you go though a cycle of feeling better/worse until finally you feel OK when you are on the right level of medication?
Yes. You are artificially providing hormone replacement and we do not replace fully from day 1. You work upwards in stages.
This means you feel good but then worse as your body consumes more than you are supplying it. Eventually you will be supplying the correct amount and the body will be fulfilled all the time.
What that amount is depends on your metabolism and how everything works normally.
Typical replacement doses are 100-175 t4. Some people need less, some more and some need t3 adding.
It should be all about how you feel but a tsh of 0.5-1 is a good place to be with an ft4 of 16-20. Ft3 wants to be in the 5’s ideally and the uk range is roughly 3-6.5.
If the gp wants to use tsh only and is unhappy to provide more t4 go for self experimentation for that last 25mcgs. This is ilkley to make all the difference. You can then demonstrate the extra makes all the difference and he might find it harder to lower you down.
Well, it's not really a 'medication', not in the normal sense of the word. It's a hormone. And hormones don't work like aspirin. And after one week, your increase in dose would hardly be doing anything yet. It takes at least six weeks to feel the full effects. So, yes, you do have to be patient. And, your TSH is still too high. The aim of thyroid hormone replacement is to bring your TSH down to 1 or under.
But, your doctor should not be dosing by TSH alone. He should also be testing the FT4. Once you are on thyroid hormone replacement, the TSH is pretty much irrelevant. It won't tell you very much about where your thyroid hormones are - TSH is a pituitary hormone. The most important number is the FT3, but doctors don't understand it, and labs won't test for it, as a general rule.
But, muscle aches might not have anything to do with your thyroid hormones, they could be due to low nutrients. When you have your next blood test, ask for them to test the vit D, vit B12, folate, ferritin. These all need to be optimal - not just in-range - for your body to be able to use thyroid hormone. In the meantime, you could try taking some zinc. Hypos are usually low in zinc, and low zinc causes muscle pain.
Have you had your antibodies tested? If not, you need to ask for your TPO antibodies to be tested.
Next time you go for a test, make sure that it is as early as possible in the morning - at least before 9 am - and fast over-night. Leave 24 hours between your last dose of levo and the blood draw. Your doctor probably won't have told you any of that, they are patient-to-patient tips on how to get the highest TSH and the most accurate FT4.
Did your doctor tell you how to take levo? On an empty stomach, with a large glass of water, at least one hour before eating or drinking anything other than water. Leave at least two hours before taking any other supplements or medications, four hours before taking iron, vit D, calcium, magnesium or oestrogen.
If you have any other questions, don't hesitate to ask, that's what we're here for.
After I was diagnosed with an underactive thyroid I was started on 50mcg Levo and took this for 6 weeks after which my symptoms had improved slightly. The dosage was then increased by my GP to 75 mcg and I took this for a further 6 weeks.
I was beginning to feel like my old self again until about a week ago, when the cold feet, aches, tiredness started to get worse again. Today I upped my dose to 100mcg and will wait and see what happens over the next 6 weeks.(GP says in range at 75mcg TSH =1.97 and will not test FT4)
My question is, is this typical that you go though a cycle of feeling better/worse until finally you feel OK when you are on the right level of medication?
If your doctor is only testing the TSH, be very careful. It means he has no idea what he's doing, and will start wanting to reduce your dose when the TSH goes down. Which is totally wrong. At the moment, it's too high. Should be 1 or under. But, when it starts going under 1, that's when that sort of doctor starts twitching! And you end up in an increase/decrease cycle that gets you nowhere. The most important number is the FT3, and you are not over-medicated unless that is over-range. But, as the labs won't usually test it, most people do it privately, so t-hat they have ammunition to fight their TSH-obsessed, ignorant doctors.
I’ve made several posts on here, asking when I will feel better on Levothyroxine.
I had loads of support, and advice.
I’m now on 100mcg of Levothyroxine with a blood test due soon for an increase.
My results are going down, but I don’t feel 100%, my anxiety is disappearing, but I’m still freezing cold and feel worn out in the mornings, despite having slept right through.
What I’ve learnt is this thyroid business take time to heal, months and even years.
Take one step at a time, hard to think you will get better when your having really bad days.
The most important thing is that TSH, T4 & T3 need testing not just TSH, and most importantly your GP should take in to account how you are feeling.
If your feeling rubbish, then like others have replied to me, your not on the right dosage yet.
SeasideSusie has replied to you, so follow the advise.
If you can raise your room temp in am that will give your thyroid a break from trying to keep you body temp up when your meds are at the lowest. The winters esp in north USA do a number on hypothyroid.ppl the thyroid is overworked and a slight increase in dose is needed but try telling that to an endo when your TSH is considered too low. We need more endos w hypothyroidism who can relate better to our suffering and inconsistent energy levels. Feeling energetic for few hrs followed by plummeting energy levels...and being told your overmedicated bc of low TSH but both FT4 and FT3 prove otherwise. It's a long long way to Tipperary...but a warmed up room could help.
Thank you to everybody who has replied to my post.
When you are feeling a bit rubbish day after day you can become a bit despondent about things. I have now read a lot about the condition and have formed a rough plan of action re seeing my GP in a few weeks with some facts .
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