Keeping this very short, the last few months have seen my suddenly go over medicated, so reduction of medication from 125 to 100 which I was on for quite a while also saw me over medicated, so again I was dropped to 75mcg. Now this is where I started feeling symptoms, the biggest of all is my Achilles heel, every time I walk it swells up and them my foot swells up. Doc thinks I must of injured it’s, bit I don’t think I have. Then I questioned why the hospital said I have hashi but she doesn’t and it ended up with her saying there must be another reason for all of this no thyroids. So I had test don’t on medicheck showing I was 110 ( 0 -39) antibodies confirming hashi, I don’t feel well at all, nails snapping skin sand hair dry, pains in fingers, doc said go and get some Vitimin e. I think she has stopped listening to me now I’m lost on what to do my latest bloods are Vitamin D 56.1 (50-100) still down from even tho I have had the course . TSH 0.016 (0.38 - 5.33. T4 14 (7.0 -16.0) T3 5.6 (3.8-60). To top it all I had a scan of my thyroid last week and was told it was small, so any idea on what is happening to me?
Sorry if this sounds as confused as I do
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Binky45296
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Everything was out of range it was the first blood test I had after being put up to 125mcg. Nov blood results were TSH 0.005 t4 21.3 (7 -16) t3 7.6 (3.8-6)
Jan results were on 100mcg TSH 0.005 T4 18.4 (7-16) T3 6.9 (3.8- 6)
Yes I took the full course in January and I take maintenance dose of 10ug daily along with all the other vitamins.
Your antibodies are not that high to be causing any problems. Just looks like you were overmedicated. Read that the term Hashi flares is not correct. Flares are associated with Grave's disease...and their flares are serious and debilitating.
In that case, I suspect that your high levels in November had little to do with your dose, and was more likely the tail end of a Hashi's flare. These are the things that are likely to happen with Hashi's, and I really do not understand why doctors don't expect it.
You could probably do with a high maintenance dose of vit D. Perhaps SeasideSusie will pop in and tell you how much to take.
She was OVERMEDICATED. Plain and simple. People sometimes like being OVERmedicated. There are a lot of ppl who can take high doses and barely feel it. Then there's the opposite the real sensitive ones.
If she was ok on 100 mcg, adding 25 mcg is not going to make her FT4 suddenly shoot up to 21.3. It just doesn't happen like that.
On the other hand, she has Hashi's, and whilst you may thing that her antibodies aren't high enough to 'cause problems', I beg to differ. Antibodies fluctuate, so we have no way of knowing if the level in the test was the antibodies at their highest, or at their lowest, or somewhere in between. Her antibodies are over-range, that's all that matters, because that means she has Hashi's. They don't have to be in their thousands to 'cause problems'. It's not the antibodies that 'cause the problems' anyway. It's the immune system attacking the thyroid. The antibodies just go in after the attack to clean up the mess.
Free levels after an attack usually go up to about FT4 35, FT3 12, approximately. The OP's levels weren't quite that high, so that means she was coming down from an attack. Which would mean that the antibodies were probably not at their highest. They are highest just after an attack.
But, I do agree with you. Calling the attacks Hashi's flares is not a good name. It doesn't really sum up what happens. I prefer to call them Hashi's 'hyper' swings. And I'm 99.9% certain that is what caused the OP's levels to shoot up like that.
Why are you so obsessed with her being over-medicated? Seems like a vendetta? Do you know her personally and want revenge for something? This really isn't nice! You've been listening to too many doctors, I think, and believing them. Or are you a doctor yourself? Do you have any idea how much levo she would have to take to get her levels up that high? No, I don't think you do.
The antibodies are doing the attacking and sometimes causes dumping of hormones after the destroying thyroid tissue. But if it's still dumping then you have to be more careful with dose. Some ppl actually swing over to hyper and stay hyper. It's becoming more common these days...used to be rare. If we had the baselines of binky's TSH etc before meds that would help some. Ps meant to say 25mcg dose up or down can cause problems. Not a 25mcg dose. Decades ago with my ABs in 1000s never once did I.have.any.unexplainable rise in TFTs. So guess AB werent on the warpath. then or decades later.
But you have to take her past history into account. She not just been diagnosed. She said she 'suddenly went over-medicated'. Well, people don't suddenly develop an FT4 of 5.3 points over-range. It builds up slowly. And, her antibodies aren't that low. 110 ( 0 -39) Top of the range is only 39. So, her are well over the top. Not that that makes any difference because the antibodies are not the disease. Some Hashi's people never have over-range antibodies. And, even if you manage to get rid of the antibodies completely, you would still have Hashi's. It doesn't go away.
I really think you are a doctor, because you want to see people diagnosed later when in actual fact, you are hypo when your TSH hits 3. You want to see people suffer until their TSH gets really high, don't you. And do you really believe that anyone could possibly need a dose of less than 25 mcg? That would make a person worse, not better.
My antibodies test was done 5 months after this initial incident. Yes I my bloods suddenly showed I was over medicated with just a 25 mcg rise ( I was feeling much better on that does) and when they brought me back down to 100 I was still over medicated ( I had been on that dose for about 9 months before starting to feel ill again) they brought me down to 75 and that’s when all the issues stared above kicked in and I was very ill. My doctor, as of last week brought me up to 100 again as she’s confused with it all, I am still having issues to be honest but will wait till new blood results come in to see what is happening . Please don’t have a go at grey goose she’s been really helpful in the last couple since I joined. I come in here for advise from fellow sufferers and what they advise. My am feeling somewhat better from taking the increased dose of vit d do thanks for that snd Thanks to everyone for your advice.
Oh yes and I no one actually said I wasn’t over medicated they just stare antibodies May have been involved, but it was strange that I was still over medicatief in a 100mcg.
Did you feeling ok before your dose was decreased? Everything I’ve read tells us to ignore the numbers and go by symptoms/ how we feel. You said your symptoms returned when your dose was reduced. I personally would return to my original dose and retest in a few weeks time and see what the antibodies are like then. If your numbers are better and your antibodies are down then you have your answer. 💐
I felt fine on 125mcg, the best I have ever been since getting diagnose was okay on 100 but terrible On 75. My doctor wasn’t going to ignore it unfortunately even after telling her I was fine.
Well, I don't care what anybody says, to me, it was a Hashi's hyper swing. And, I think that the fact you are having to increase your dose again, proves that.
I totally agree. It’s not rocket science! She was well on 125 mcg and as soon as she dropped her dose she became symptomatic. It doesn’t appear logical to reduce a dose if someone is telling you they feel absolutely fine. Surely it would have been better to wait and re-test a few weeks later, that would likely have proved it was a Hashi flare. It’s interesting that her TSH stayed the same but T 4 and T3 started to drop? I’m no expert I’m just learning but there’s no way I would have reduced my dose if I was feeling ok.
I was due a blood test last week but I’m holding off until I have a private test. I’m feeling better but not there yet and I’m terrified my doctor will reduce my dose based on labs rather than how I feel.
Antibodies only go high after an attack! Oh so when ppl have it in the 1000s in a few days it should drop down. Please you are giving wrong info to try to make a point. It took 15 yrs to get mine down to 10. Not a few days after being attacked. Yeah it should be so easy.
No, I'm not giving false information. And, I'm not trying to prove a point. You're the one trying to prove a point, you're are hide-bound on proving that the OP is over-medicated, for some unknown reason, even though her numbers now say she is under-medicated. I don't understand your motive but it's rather concerning to say the least. Why are you so angry? You degage an air of anger right form your first comment on here.
And, that is definitely my last word on the subject.
Even if she had an "attack" she was still overmedicated. And if she continues having attacks then she stay away from tht dose. Bc with those sky high numbers she should be on a much lower dose before the next attack which could be hours away.
Oh, those numbers are a long way off sky high, believe me! Have you been reading on here, at all? I don't think so. And no, she wasn't over-medicated - did you look at her other numbers? And, no, she probably won't continue to have them, they're not usually a regular thing - pretty well spaced, usually.
But, that's all I have to say on the matter. I am not going to get dragged into an argument. You have your opinion, I have mine, up to Binky to chose which one actually fits her circumstances.
No, Hashi's attacks aren't just a few hours apart. Where did you get that information? They could be years apart. But it varies from person to person, but never just hours apart.
So by your theory when my TPO was in the 1000s my FreeT4 and T3 should have been even higher than hers. Sorry they were basement level no more like sub basement.
No. I didn't say that. It doesn't necessarily work like that. It's not a well-regulated machine. Totally unpredictable. But, if your antibodies were in the thousands, then you have Hashi's too. You really ought to read upon it a bit.
My antibodies were in the 1000s decades ago. They are now down to 10. Please there's a tremendous difference from 1000s to 100 or 10. Don't make it like it's all the same. It's not.
Of course it's the same. What exactly do you think the antibodies do? The fact that they were once in the thousands means that you have Hashi's. And, you still have Hashi's even though they're now down to ten. Hashi's doesn't go away. Unless, of course, your gland is now completely dead. Then the antibodies will go very low. But, you'd need an ultrasound to find that out.
Vitamin D 56.1 (50-100) still down from even tho I have had the course
10ug D3 is 400iu. That wouldn't help a sunburnt flea. You have a very long way to go and need much more than 400iu.
The Vit D Council recommends a level of 100-150nmol/L so you need a dose to bring your level up to that, once you've reached that then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
As you have Hashi's then an oral spray is recommended for best absorption, BetterYou do one in 3000iu strength. My suggestion would be to take 6000iu daily for 4 weeks then reduce to 3000iu daily. You could just use 3000iu daily but it will take longer to reach the recommended level. Retest 3 months after starting, you should by then be within the recommended range and can sort out your maintenance dose.
Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
Thank you, it been very helpful and will look into ordering. Not sure how I have got in this state but hopefully it will come to an end now. I will have to wait and see if things settled with T4 and T3 levels aswell before I ask to go back up to 100mcg as below a 100 I always feel awful.
Greygoose do you experience the Hashi attacks often? From the day I was dxd til decdes later I never had a Hashi dumping. That usually happens real early and comes with anxiety attacks etc. Don't think she would even want to be on that dose if she was experiencing dumping. She would probably want to skip her meds for few days. She's.just the opposite she wants the higher dose. Ok Sherlock.
Achilles is usually thyroid linked, achilles reflex was one of the tests drs did for hypothyroid. It is one of the first signs I am running low on t3 for me, solid, swollen, sore achilles x
She won’t listen to me and will not add any due to blood test results, however I now have proof I have hashi, so I will have to go visit her and I will speak to physio and EE what she says to.
When there is possible dumping the rise in thyroid hormones will only last a few days. If you keep getting the suppressed tsh with high TFTS then that shows its all from the meds. With dumping you would feel hyper with anxiety tremors etc. With " OVER"medicated you might not.have the hyper feelings and actually feel better. Im not sensitive to thyroid meds at all and have had high TFTS but I felt no hyperness. It wasnt dumping it was tbe dosage. I have taken 2x my dose when i missed a day no hyperness. You can actually take a whole weeks worth.in one dose without symptoms as long as you skip the days. To test absorption they sometimes give ppl 1000s mcg then test...this is usually done or was done when they believed the person.wasn't taking their meds everyday or think the person cannot absorb properly. They have given severely depressed ppl without any thyroid disease doses up to 400mcg daily without any health effects only decrease.in depression.This is only for few months. I was surprised when I read that and wondered if I was undermedicated if these depressed ppl can take.such high doses. Food for thought. I have suppressed TSH without high TFTS FT3 3.00. Everytime I see a new doctor it's.a pain in the.xxx. And impossible to get an increase in Rxd meds. So you can expect this with a suppressed TSH and high TFTs...
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