Thyroid UK
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Need some help

Need some help

Hi, I had radioactive iodine therapy back in 96,been on medicine ever since. I have been on levothyroxine,tbe labs are always bouncing around,so changing my dose alot over the years. Last year December 2016 they put my on synthroid to see if my labs would be more stable,had a rough year with it,anxiety was a big thing and the last 6 months my knees and calves just hurt so bad,my Dr said it cant be my thyroid. They took my labs 5 weeks ago

T-4 was 1.4, range is0.9-1.5

My tsh is in the picture.

I went from 88mcg synthroid to 100mcg levothyroxine

So its been 5 weeks,I feel very fatigue now,I didnt before,I feel like Im so tired at times i hate this feeling!not sure if its the new dose or medicine? Can someone give my some advice,they wont do labs until 8 weeks. THANKS

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Shellmarie,

Unusual to have high TSH with high FT4. Were you taking any supplements containing biotin when you had the blood test?

I can't see why you would have hypothyroid symptoms with T4 1.4. Is it possible the anxiety and pain in your knees and calves is due to Synthroid or did you have them prior to switching?

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I had anxiety when they put me on synthroid last December 2016,that did only last a few months,but my knees and calves have been hurting before these recent labs i had 5 weeks ago. I guess Im concerned why am I so tired these last few weeks,could it be my levels changed with the new medicine? And I do take a multi vitamin and it does have Biotin 1000 mcg,is this something i shouldnt be taking?

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Shellmarie,

Biotin in supplements can interfere with assays that use biotin and skew blood test results giving some peculiar results. As most of us don't know what is used in the assays you should stop taking biotin up to a week prior to having a blood test.

endocrinenews.endocrine.org...

If the TSH result is accurate then it is high because T4 and T3 are low. If the high FT4 result is skewed and T4 is actually low that would explain your fatigue. It may be worth stopping biotin for a week and ask for TSH, FT4 and FT3 to be tested.

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Thanks so much for the help,I would hate to think these past years my labs are not accurate due to my vitamins,and all this changing my dosage all the time wasnt actually needed. I have alot to learn. Thanks again

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Shellmarie,

You'll never know but it is worth considering for the future. The other reason for chopping and changing dose is doctors who will not tolerate TSH below range and constantly try to dose according to TSH level leading to yo-yo dose changes and levels.

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That is a pretty high dose of biotin. A couple of research papers have been quoted in the past. I know the numbers given were a lot more than my multi-vitamin, but mine is only 80mcg. So though my memory is bad, I'm sure you're into the range that has been found to make a difference.

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I only this past year started having the knee issues,the same time i started synthroid.

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Shellmarie,

Perhaps Synthroid is causing the knee issues. Although the makers and a lot of people think Synthroid is the best brand it doesn't actually suit everyone. Why not try a different brand and see whether the knees improve.

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what is a good tsh to have,Im confused, some people have a very low one.

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Shellmarie,

TSH isn't as important as FT4 and FT3 but most people are adequately dosed when TSH is between 0.6 and 1.0.

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I have never had myFT3 checked,Dr has never mentioned it. So my FT4 was 1.4 this last time,and it was in range with 1.5being the top of range. They increased my medicine for my tsh to come down,will my FT4 come down also? Sorry for all tbe questions😊

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Shellmarie,

TSH rises when the pituitary detects insufficient T4 and T3. When sufficient circulating T4 and T3 is detected TSH will drop.

That's why your TSH and T4 both being high is odd. Increasing your Synthroid dose will raise T4 which make TSH drop.

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Thanks again for the help,learned so much today!

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I don't know where you live. I live in the US. TSH according to my lab should be be between .46-1.45. T3 & T4 levels can be adequate & TSH high. TSH is important because that is Thyroid Stimulating Hormone sent by pituitary to tell thyroid to work. All of your blood tests associated for thyroid should be checked. T3, T4, free T3 direct, TSH, thyroid Antibodies & others as instructed by your doctor. The labs here determine the range by how many tests have been done in that lab. Why I don't know. I guess because of environment. If Dr won't do them. Do your research on what tests need to be done & go to lab & have them performed yourself. Do research. I learned a lot by doing research on thyroid & Endo system.

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You need your FT3 checked as well. Apart from your TSH beeing way to high, it could be, you are not converting well, from T4 to the active T3. This is so important. Which brand of Synthroid are you taking? I ask, because the different fillers have big influence on the effectivness of Levothyroxine. We have a big scandal here in France, with Mercks Levothyrox,(Euthyrox in some countries), that changed formula in march 2017. More then 10 000 people a sueing Merck in the biggest class action lawsuit France has ever seen. Our group has sent letters to press, presidents and radio stations all over Europe, (not sure if England is supplied by Merck), because Merck Sanofi wants to slip this new formula to the rest of Europe, by the end of June. Keep your eyes open for this. The new formula imposed on us, now contains Manitol and citric acid , instead of the old formula, containing lactose, as a filler. This changed bio availibility and led to conversion problems in roughly 5-10% of the people.

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Thanks for the help,I was always on levothyroxine up until last December2016,they switched me to Synthroid becouse I never had great labs,so on synthroid all of 2017,my knees and calves have hurt so bad for the past 7 months,had my labs done again December2017,have my labs posted. They changed me back to levothyroxine again,so the last few weeks I didnt know if being on generic made me feel so bad,or just my body getting used to the higher dosage. I just would like to be on a dose and stay on it,not this yo yo up and down.

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shellmarie,

I did not see this post earlier. All I can say is , that it is illegal in Germany and France for a pharmacie to switch you to another brand of levothyroxin without a doctors advice.

Because the fillers do make a difference in availability.

We see this right this minute in France , were thousands of patients are just sueing Merck Germany, for having secretly replaced the old formula, one containing lactose, with a new one containing mannitol. Some got really ill, and could not retrace this to the changement of their drug.

So yes it makes a difference. Your doctor was probably trying see, if another brand would work better for you. It took about 4 weeks to notice a difference.

"Vivre sans thyroîde" (Living without a Thyroid, french association for thyroid sufferers), has asked the law firm MySMARTcab to seek an “emergency expertise procedure,” which was heard in Paris on 23 February. MySMARTcab has already filed the civil claim for compensation against Merck. The case will be heard in Lyon on 1 October 2018.

It´s all over the Television here in France.

I hope you will find a brand that is good for you.

Many people here, got put back on the old formula. And feel much better since.

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I had a friend with blood results like this. The missing piece is the freeT3, and his was on the floor.

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I will see if they will check free T3 for me also. Thanks

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When things aren't going right we really need to know what our FT3 is doing as that is the active part. Have a look on the Thyroid U.K. site as lots of info on there and shout out if anything you don't understand. Thyroid Uk run this forum.

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I am sorry you are feeling so unwell. I'm not as knowledgeable as many on this wonderful site but I thought perhaps a gentle (((hug))) might help you feel a little better this morning. xxxx

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Thankyou😊Im hoping I get feeling better soon.

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How long do you leave between taking your Synthroid and having blood drawn? And what time of day do you have your blood drawn?

Levothyroxine typically peaks your Free T4 level somewhere around 2 hours after taking it. Having peaked, it slowly falls down. Any test done fairly shortly after taking a dose will have a Free T4 which does not reflect your trough level. Usual recommendation is to leave 12 to 24 hours between last dose and blood draw. TSH varies throughout the day with its peak in the middle of the night/early hours. There can be enough difference between early morning (e.g. 08:00) and afternoon (e.g. 15:00) to make the difference between diagnosis/non-diagnosis, or dose increase/no dose increase.

Adding this to possible biotin interference, your blood results could very well not be reflecting your reality.

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I usually take my pill at 7am and my labs are are done around 11:00 am,so its a few hours after. I was never told anything about having labs that close to taking my pill would effect my labs! I had no idea on any of that,I just read about not drinking coffee after taking my pill too,thats mistake I make😕 I might have to rethink my time I take my medicine,possibly at night?

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Even without making any other changes, you could simply take that day's pill at 11:01 - just after the blood draw. :-)

We do go on about making sure we separate food, drink, etc., from levothyroxine, but if it is only on one occasion, every few months, it won't make that big a difference.

As I have posted several times, none of us is born knowing any of this. We slowly learn as we read, as we experience, as people tell us, etc. One thing is for sure, if we wait for the medical establishment to keep us informed, we'd never find anything out. :-(

I take mine at bed-time - always have. Doesn't suit everyone.

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You should not take your pill the day of the blood test, just take it afterwords. Insist on FT3.

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I know if you go up in dose it will cause tiredness for a while until you get used to it ,but then you will feel beter ,I think it is because it makes all your organs work harder .it is a difficult thing to get right sometimes .

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I hope this changes soon,I hate the way I feel right now! I know i probably shouldnt do this but i didnt take my pill onTuesday becouse i feel so bad,i thought maybe im over medicated,I didnt know at that time an increase in medication can make you feel bad😞

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I know it's been said, but it's the ft3 that is the most important, which is the active part. Not much help, but hope you can get this checked soon. X

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They dont check that😟

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I was having problems, and my doctor did check it, and found I was not producing enough ft3 even though my tsh was at a correct level. He then sent me to an endocrinologist, who proscribed me direct t3 Liothyronine. I have been much better on this, but took time. I will soon have to buy my own t3 some how as the nhs are withdrawing it due to cost. Anyway, if your doctor will not check it I would either change my doctor or pay for a private blood test. At least you will now either way if your ft3 is in balance or not and go from there. Mast doctors only go by the tsh test, but that is so wrong. Good luck R

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Thankyou so much for the advice,I might be making a switch to a new Dr,maybe they will check it for me.

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Shellmarie, there's no way you're over medicated. Your TSH is so high you could be diagnosed with hypothyroid right now!

But it is possible to have difficulties with things like fillers, and there is often a few weeks of feeling strange before it settles down.

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I agree with your info, but the ft3 must be checked to see if levothroxien is converting properly into t3 through the liver etc. I had this problem, not saying shellmarie is the same, but it must be at least ruled out to move forward.

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Yes, I agree. Shellmarie's TSH is high, but freeT4 is also high, so her freeT3 is almost certainly very low. This is because TSH theoretically rises to tell your thyroid to make more hormone, when freeT4 and/or freeT3 are low (showing the amount of hormone in the blood is low).

Usually TSH isn't useful for much. But when it is very high it's obviously not right.

Although elsewhere in the thread people are asking if the blood tests were conducted properly (early in the morning, fasting, 24hrs after Levo), so it may be the freeT4 would be a lot lower.

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Thanks Im hoping I can get my labs done soon. I did take my pill last night at 10pm instead of the morning,people have suggested to try that. I had a much better day.

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Hi there. Your TSH coukd suggest you are under medicated. However You don't say how old you are but you may have to consider menopause. Mine came early (41) and was so tired I felt I could just lie down anywhere . .middle of the road . . and wouldn't care. Went on HRT and felt like a new woman within days! Always worth considering other possibilities. Good luck with everything!

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I am 49 and started early menapause years ago so I know this isnt whats going on. This all started after i started a higher dose of my thyroid medicine,it was a couple weeks on it,and it has just went down hill from there. I did think maybe i picked up a virus for a bit,but the fatigue was so awful i started thinking it was my thyroid. Thanks for the help😊im hoping it gets better,learning so much these past days on here.

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Hi, I just was wondering if you have maintained your same weight, as weight increases could also affect knees.

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Actually I have gained weight this past year and my knees started hurting😟it stinks becouse i cant seem to lose weight anymore.

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Your TSH is tooooo high. Give the medicine a month to work. Make sure you take with water on empty stomach. No food for two hours. I hope you feel better soon. I don't know how you get out of bed. I couldn't with a TSH level of 6.087.

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Thanks for the help

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I think I sent you something last night. Your TSH is really too high. If you radioactive iodine test, they may have killed your thyroid & it's not working. If so, you need two medication or 1 that will replace T3 & T4 & Free T3. Your medication only replaces T3. Your pituitary is pumping out TSH trying to get your thyroid to work. Pumping out way too much. That test is supposed to be for individuals with overactive thyroid. Radiation will kill your thyroid.

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Really,do most people 2 medications for this? After I had it done,I was sent to my primary Doctor for all my labs,a few times they only checked my tsh but now they check T-4 also. Thanks for your help.

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If your thyroid is killed by Drs or does not work, you need more than levothyroxine, synthroid or the usual medication. Those only replace T3.

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Im learning so much on here,Thankyou! My labs will be coming up soon,Im going to request they run those extra labs.

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Hi. I had a complete Thyroidectomy in 2005 and after 2 years of treatment with synthetic replacement therapy and still symptomatic, my Dr switched me to Armor thyroid. It's naturally made using sheep thyroid gland. It helps in the uptake of T3,T4 and TSH and also contains other things that the synthetic doesn't and makes a big difference. Also I was told that the blood tests are very inaccurate. I know this to be true too because my blood tests were coming back normal with 11 goiters on my thyroid gland, one an inch in diameter and I had all the symptoms and then some. They were only discovered after a CT showed something odd and I was sent for a follow up sonogram. They saw them then clear as day. One thing I've learned is if your thyroid is causing you problems, it's likely just reacting to other problems in your body like EBV (Epstien-Barr syndrome) or other already existing auto immune issues. Unless you have many growths (and sometimes they can be treated or removed alone) or have cancer, do everything you can to heal it and find the root cause before you let them remove it or give you the dye to kill it. Your thyroid gland controls almost every function in your body, BP, hormones, certain vitamin levels, weight, sleep, etc etc that living without it is a nightmare if it can be avoided.

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