A follow up from previous post about TSH 23.4

[BethanyOxe]

This is my trend of labs. The last result was 23.4...i have tried Synthroid 88..100..112..125...and then synthroid 100 with t3 5mcg x2 day and last result is 1st draw after armour 60mg for 5wreks...after TSH below 1.0...i have floaters...pins and needles and electric shocks all over body constant and twitch all over constant...muscle aches...dizziness sometimes and fatigue

[greygoose]

Have you had your vit d, vit B12, folate and ferritin tested? Because the pins and needles, twitches and shocks sound like nutritional deficiencies.

That TSH is obviously a lab error of some sort.

[BethanyOxe in reply to greygoose]

yes I have had all tested and in good ranges ...those results are in same page of picture of results ....

[BethanyOxe in reply to greygoose]

I'm sorry no they are not thats the other page and I didnt post that 1

[BethanyOxe in reply to greygoose]

so please help me understand...through all of this my FT3 has stayed low its never not once been in a high range! even on synthroid alone and synthroid with t3 and now armour?? is this a sign of something or is it not relevant?? please and thank u

[greygoose in reply to BethanyOxe]

When you were taking Synthroid and T3, how long a gap did you leave between the last dose of T3 and the blood draw?

Your FT3 on NDT was low because you were leaving too long a gap between your last dose of NDT and the blood draw.

Can you post your results for nutrients?

[BethanyOxe in reply to greygoose]

B12 693 (193-986)

VitD 41.3 (30.0-100.0)

Iron 85 (50-170)

Ferritin 68.5 (8.0- 252.0)

Magnesium 2.3 (1.6-2.4)

[greygoose in reply to BethanyOxe]

Your ferritin and vit d are much too low. Your doctor only said they were fine because they're in-range, but they're too low in those vast ranges.

So, how long a gap did you leave between the last dose of T3 and the blood draw?

[BethanyOxe in reply to greygoose]

oh I didn't take the t3 none that day...which was for the lab result TSH0.2 and FT3 2.3

[greygoose in reply to BethanyOxe]

Yes, but that doesn't tell me how many hours you left between the two. But, if you took your Synthroid and T3 at the same time you take your NDT, and had your blood draw at the same time as you do now, that would make a gap of 33 hours, about, which is much too long. And, that's why your FT3 is always low. You need to wait for your next test, and do it properly, to know the true level of your FT3.

[BethanyOxe in reply to greygoose]

yes if u look at all my other test before TSH 0.5 I was on synthroid only for months and it was always low then

[BethanyOxe in reply to greygoose]

yes a gap 33hrs...i called her office days prior how I go about taking t3 before blood draw and I didnt get answer soo i just didn't take that day

[fibrolinda in reply to BethanyOxe]

Blood test when talking ndt or t3 8-12 hours after last dose. Wiggle doses around the day before to get the right gap. 33 hours is just, 😱

How much vitamin d and are you taking k2 mk 7 with it, plus magnesium?

Methinks you need to do a lot of reading love😁 I had to !earn SOOOO much when I joined, stil! !earning 😊

[BethanyOxe in reply to fibrolinda]

I take vit d 3000 at least every other day...i don't take k2 or mk7??? I don't take magnesium but I drink electrolyte drinks sometimes! I do need a lot reading soo much info out there I don't know what is truly accurate and dependable...and depending on doctors feels evils! i appreciate all of u I have been to more than 7 doctors and I still have no answers with progressive neurologic problems

[greygoose in reply to BethanyOxe]

vit K2-MK7 is one vitamin. That's it's name. The MK just describes the type of K2: natural or synthetic. And you need to take it because taking vit d increases absorption of calcium from food. The K2 makes sure it gets into the bones and teeth, and doesn't build up in the soft tissues, which can cause a lot of problems.

And, you need to take magnesium because it works with vit D. So, taking vit D depletes your magnesium - and you were probably deficient to begin with - most people are. Yes, I know you had it tested, but testing magnesium is pointless - don't know why they do it - because of the way the body handles magnesium. It being in ranges does not mean you're not deficient.

[BethanyOxe in reply to greygoose]

wow ok thank u. where can I find this supplement?

[greygoose in reply to BethanyOxe]

Which one? Vit K2? I buy mine on amazon. But, just about anywhere that sells supplements, I should imagine.

[BethanyOxe in reply to greygoose]

Thank u

[BethanyOxe in reply to greygoose]

I have been taking more vitamin d3..just hasnt been retested!

[greygoose in reply to BethanyOxe]

And have you been taking iron?

[BethanyOxe in reply to greygoose]

I started taking iron 3 weeks ago if not every day...everyother day

[greygoose in reply to BethanyOxe]

Do you take vit C with it?

[BethanyOxe in reply to greygoose]

No I do not...

[greygoose in reply to BethanyOxe]

Well, you should. It helps absorption and protects your stomach.

[BethanyOxe in reply to greygoose]

ok i will get some and take with it. Thank u

[greygoose in reply to BethanyOxe]

You need 1000 mg.

[SlowDragon Administrator]

Can you type up results and ranges on

Vitamin D

B12

Ferritin

Folate

[BethanyOxe in reply to SlowDragon]

I will post later im at work and dont have copy with me

[BethanyOxe in reply to SlowDragon]

B12 693 (193-986)

VitD 41.3 (30.0-100.0)

Iron 85 (50-170)

Ferritin 68.5 (8.0- 252.0)

Magnesium 2.3 (1.6-2.4)

[BethanyOxe in reply to SlowDragon]

I forgot I had my chart app

[JaclynB]

How have you been? Any change in your symptoms?

[BethanyOxe in reply to JaclynB]

Hello! Soo nice to hear from you! Nope no change in symptoms. remember I was on Synthroid and they tried Armour 60 mg and in 6 weeks I went from 0.5 TSH to like 23.4 TSH well I went seen new endo and she upped Armour to 90 and I stopped taking my iron...mind u i was taking Iron 25mg at night like 7pm...way 4hrs out...i was thinking it was causing me not to absorb medicine. the 2nd endocrinologist in 3 weeks on Armour 90 and stop taking my Iron went from TSH 23 to 1.9. My body is dking some major shifts...the twitching is worser and ringing in ears worser...getting headaches too. I seen 3rd neurologist that concluded MS is definitely a No and most likely a NO to ALS. he drew a bunch autoimmune labs cause he said possible to develop autoimmune issues after cancer...i haven't went back to office but in mychartapp all seem to be negative. he mentioned possibly Small fiber neuropathy and BFS and I'm getting another EMG Dec 27 and getting nerve biopsy same day! im tired of this....i fear im always be like this. 😢😢

[JaclynB]

I’m thinking that your like me and for some reason are bodies don’t tolerate thyroid replacement of any kind. My tsh is now 6.70 and all of my strange twitching and other strange symptoms are now gone but I definitely feel like I’m dragging. I feel so tired and feel so sleepy. Over and under medicated feels almost the same just in different ways. I didn’t tolerate the t3 in armour when I tried it years ago. The more I took the worse I got. I’m thinking that it’s all side effects of the drug itself that my body doesn’t like.

[BethanyOxe in reply to JaclynB]

well I remember u said u alternate ur meds right like 88cg and 100mcg??

[JaclynB in reply to BethanyOxe]

Yes I have to alternat me but right now I take 1 75mcg with 1/4 of a 50 mcg tablet to make 87.5 mcg a day. They make a 88mcg tablet but I have an allergy to one of the dyes in the 88mcg tabs. If I take anymore than that I get the same symptoms as you. Before I had my hyperthyroidism treated one of my biggest symptoms were ringing in my ears. It was as if it causes the inner ear nerve to become sensitive. Can you go back to levo only for awhile at a lowered dose just to see if all of the crazy twitching and symptoms go away and then after 3 months recheck your tsh and very slowly raise your dose. I cannot raise my synthroid more than 5 mcg a day or the twitching starts back up

[BethanyOxe in reply to JaclynB]

have u thought about tryi g 1 75mcg pill and 1/2 50mcg one day and 75mcg and 1/4 50mcg next day?? Are u serious by 5mcg a day?? I went and seen endo today and I asked to go to generic levothyroxine the highest of generic I ever took of generic was 88mcg and 3 weeks later I was put on synthroid that was around end Jan and beginning Feb this year. did u get burning in various parts of muscles at rest??

[JaclynB]

Yes I did get the burning. But I only get burning and bad twitching if I take too much of my synthroid. For some reason it’s like my nerves can’t handle the medicine. Even if my labs say I need to increase when I did increase it starts back up with the twitching. It got so severe back in 2014 that I convinced myself to see a neurologist because I thought I had to have ALS or something else sinister. But it was the thyroid medicine. I decrease it and the twitching burning ear ringing buzzing vibrating and the list goes one stopped. I have rollercoastered up and down so many times that I always know buy my crazy symptoms which way my tsh is going. High tsh and low tsh causes exhaustion just in a different way. They both cause shortness of breath but in different ways. But one symptom that always stands true is the pin pricks and twitching. Even though your tsh is saying high it’s probably the high level of t3 in the armour that is giving you the side effects. That’s why I can’t take armour. Same thing happens with t4 only drugs but it take longer to show up. If the dose of synthroid you were on was causing those signs maybe you just were over or under medicated on it. But the prickly skin is always over meds for me.

[BethanyOxe in reply to JaclynB]

I'm soo confused now!I'm hoping if I go back to generic it stop or greatly reduce twitching and hopefully I will know! I haven't been on generic for long time and it was at low dose 88mcg and thst was before synthroid and the armour im stopping today to take generic.

[JaclynB]

I hope it gives you some relief. It’s so scary when you are stuck in a constant state of not knowing what’s wrong and not knowing how to get better. I know that synthroid is more tightly regulated in the amount of levo that is in it. I think they are allowed only up to 10 percent in either direction and the generics are allowed up to 15 percent. That’s why a lot of endos will not allow someone without a functioning thyroid to take generic because it’s one of the only drugs that is so precise on getting just the right dosage. I was serious about even a 5 mcg increase or decrease can make up sick in either direction up or down. Some people only feel well when they are tightly regulated with a tsh between two numbers and when you get one batch of medicine that is say 100 mcg and then you get the next batch the following month that’s supposed to be 100 but because it’s actually 15 percent higher than now you will be taking 115 mcg than the following month your new batch is 15 percent less than before you would be taking only 85 mcg. Sending your symptoms through the roof. I wish thyroid meds were very accurate but unfortunately they are not. And all generic meds are allowed up to a 15 percent deviation but name brand are more regulated.

[BethanyOxe in reply to JaclynB]

did neurologist diagnose u with BFS when u had the twitching??

[JaclynB in reply to BethanyOxe]

No because once my tsh finally showed after almost 5 months that I was overmedicated but I kept testing my tsh and it was showing I was undermedicated that’s why I was sooo confused and when it finally showed my neurologist said no wonder your twitching. He said my thyroid was overstimulating my nerves.

[BethanyOxe in reply to JaclynB]

what was ur TSH then??

[JaclynB in reply to BethanyOxe]

My tsh dropped down to 0.24

[BethanyOxe in reply to JaclynB]

wow that's only slightly below the range...mine was 0.5 I was twitching and twitching at 23.4

[JaclynB in reply to BethanyOxe]

It was probably from when your tsh went down to 0.50 and you switched to armour that had t3 in it and the body doesn’t tolerate t3 sometimes. Will cause twitching even though it makes your tsh go high. Same thing happens to me. T3 acts immediately after you take it.

[BethanyOxe in reply to JaclynB]

soo u twitch with armour and with synthroid??

[JaclynB in reply to BethanyOxe]

Yes to synthroid when I take to high of a dose age and yes to armour even when my dose was low because of the pure t3 in it is extremely stimulating to my nerves For some reason that I haven’t figured out is why I have all the bad nervous system side effects from thyroid meds.

[BethanyOxe in reply to JaclynB]

I don't know what to do...i just seems sensations feel worser

[JaclynB in reply to BethanyOxe]

If your symptoms got worse with armour. Then your probably really sensitive to thyroid meds like me. Are you taking just synthroid now?

[BethanyOxe in reply to JaclynB]

in taking levothyroxine 125mcg only...feels like electric shocks everywhere...and if i slightly bend arms bad tingling and shock s in hands...still twitching.

the list goes on

[JaclynB in reply to BethanyOxe]

125 might be too much for you still. Hard to know for sure until you get a new thyroid test. I would give at least 2-3 months before retesting though. The bad thing is is that hyper and hypo share a lot of the same symptoms. It’s all about finding what they call the sweet spot. And that could literally be a 5 mcg increase or decrease. They say that your medicine dose is based on your weight but I have found that to be very untrue. I’m 5 foot and 165 pounds and I’m taking 87.5 mcg a day right now. If I went with what is suggested by the calculator I would have to take 125. That’s where my tsh level would be more normal but I can’t handle the twitching and pin pricks. My doctor tells me that everyone is different and that he has diabetic patients that can’t keep their blood sugar at a healthier lower level because of the terrible side effects. Same thing that happens with me and probably you too. There is definitely only one symptom for me that only happens when I take too much synthroid is the needle pricks. It never happens when my tsh is higher. That’s the only for sure way for me to know. I wish I could just increase my synthroid and feel wonderful but my nerves go haywire when I take more. I’ve been trying to figure out why but haven’t yet. Have you searched online about the nervous system affect of thyroid meds. It says twitching parasthesias the list goes on and on. Lots of people get those symptoms from taking a dosage that their body can’t handle.

[BethanyOxe in reply to JaclynB]

yes I have searched but that's based off ppl who are really hyperthyroid like TSH0.01 and then i read a lot ppl have that TSH 0.01 (example) and feel really good they might gave diarrhea or fast heart rate now or then but that's it. you only person that confessed to have full body twitching ...burning elevtric shocks...floaters ...pins and needles...ringing ears....why is my symptoms getting worser... and that still in a normal range TSH just below 2.0. So when I read hyper symptoms that doesn't apply to u cause u getti g this even when what the medical community says is normal but see its not normal for you...we are all unique and individualistic. I'm going Dec 27 to get another EKG and nerve biopsy.

[BethanyOxe in reply to JaclynB]

also the endo after starting 125 generic gave orders to retest me in 4 weeks she really wanted to put me on 175 and I said please let's not...based off last dose of armour she said 175 was that but she let me try 125

[JaclynB in reply to BethanyOxe]

your symptoms will come months before the tsh will be able to finally stablize at a low level. That’s why I would wait at least 3 months minimum before changing dose. If you retest after one month it won’t really tell your endo if you need an increase or a decrease. Basically some people have to almost ignore the tsh and go by what makes them feel better. Your symptoms increased because of the pure active t3 in the armour. That’s what makes me think that your twitching is thyroid medicine side effects because armour and definitely any increase in it will cause a worsening in your symptoms if that’s the case. Once you get on a low enough dose and stay on that dose for a minimum of 3 months and you then feel all of your twitching and ringing in the ears go away then you will be familiar with how potent thyroid meds can be. Not everyone’s body needs. The fact that your symptoms got worse but your tsh wasn’t showing up too low yet is because if you would have stayed on that same dose for an additional 2-3 months your tsh probably would have dropped to 0.03 or something like that to finally reveal the reason. I’ve been up and down so much over the years and symptoms can be extremely hyper at a tsh of 1.00 even though that’s considered a great number in the thyroid forums. If that’s not the rate of metabolism your body naturally runs on then it won’t matter how much lower your tsh says it’s just as bad for u. I stop all those nerve problems when my tsh stays above 3.00. Any less it’s like I’m taking nerve stimulants. It’s horrific.

[BethanyOxe]

I'm taking generic levothyroxine 125

..feels like im being electrocuted in many areas of body

[JaclynB]

Have your symptoms calmed down any yet?

[BethanyOxe in reply to JaclynB]

no they have not...im still on levothyroxine 125. I went to duke Friday and got EMG and nerve biopsy. I get emg results this week and nerve biopsy results in 5weeks! Thank u for checking on me...hope u had a merry Christmas!

[JaclynB]

I know once I got on a lower dose it took at least 2-3 months for things to settle down. Merry Christmas to you too.

[BethanyOxe in reply to JaclynB]

praise God...i just got ENG results they all normal!!!

[JaclynB in reply to BethanyOxe]

That’s wonderful news. It has to have something to do with the medicine itself. There was someone that posted today saying they were getting very similar symptoms to you too.

[BethanyOxe in reply to JaclynB]

can u share who they was so I can maybe follow??

[JaclynB in reply to BethanyOxe]

Den1987UK. She was replying to grey goose.

[BethanyOxe in reply to JaclynB]

I meant EMG

[Lora7again in reply to BethanyOxe]

What dose are you taking now? I was on NDT last year and it suited me better than Levothyroxine.

[BethanyOxe in reply to Lora7again]

I have tried several options 😣

[BethanyOxe in reply to Lora7again]

Levothyroxine 125

[JaclynB]

Any change yet in your symptoms. Hoping so

[BethanyOxe in reply to JaclynB]

No I went to Duke Umiversity. Got a skin biopsy which showed small fiber neuropathy I told the doctor 50% cases of ppl with fibro have sfn. he agreed ...im on cymbalta for neuropathy it has taken sensation away 90% time. they test my blood no answer to what caused this....it jyst all started after thyroid removed

[JaclynB in reply to BethanyOxe]

What is ur TSH running now? And have you changed your thyroid meds any?

[JaclynB]

Have you had any strange side effects from cymbalta? Does it improve anything else? I ask because I had a doctor try and offer it to me as an antidepressant

[BethanyOxe in reply to JaclynB]

jyst makes me sleepy I take it at night to fight that. i can't feel all the pins and needles like I did. twitching is lil better too

[BShankly in reply to BethanyOxe]

Hi BethanyOxe

Firstly, I hope you and your loved ones are in good health.

I've been reading over your posts with sympathy.

I also have many of the symptoms you described. Along with the anxiety.

Can I ask. Have you been able to resolve or alleviate your symptoms?

Wishing you good heath.

B

[JaclynB]

Have they checked to see where your tsh is at now? I tried the new Tirosint liquid gel cap levothyroxine pill and even though it was the same dose as my synthroid it really effected me bad. I took the new pill at 7:00 am and after about an hour and a half my ears started ringing really bad and I got a really bad headache. My muscles started trembling so bad even my teeth were chattering. I went right back to my synthroid the next morning. I twitched and trembled for 5 days straight until the excess med got out of my system. I talked to someone on this sight about my experience and they said that’s pretty common with Tirosint because it’s in liquid form in a gel cap pill and has no fillers so it absorbed way better so it caused immediate side effects of too much levo. They said that if you switch to Tirosint you usually have to really decrease your dose. I wanted to experiment with the next lower dose but now I’m afraid to play around with my thyroid meds because of this corona virus.

[tururu]

Unbelievable, this is the first post where I find someone who has the same symptoms as me. I was diagnosed with hashimoto, started taking 25 Eutirox and after 1 month I started twitching all over , aches ,no energy, buzzing , ear ringing... Many symptoms . I stopped taking it and it was the same ..then I increased meds until TSH was 2.3 however I just improve a little. I started gym and I took like 3 days in bed to recover from any dayly session. Tired of doctors saying everything was in my head after EKG , auto immune analysis, etc etc everything returned ok,.no Als no Ms. So I decided to auto increase dosage to test myself. I earned energy and twitching lessened a bit but I had extreme headache's, and muscle pain. After 2 years over medicated I had to stop since I couldn't even get up from bed due a lack of energy. Started the dosage test and try again from the beginning until my TSH is now 2.3 .And I am feeling even worse than 4 years ago when everything started . Dunno what to do. My muscles have no energy twitching and aching . It doesn't care my TSH is 12 or 2.3 , I feel almost the same . I m starting to think I have some kind of peripheral neuropathy, neuromyotonia (Isaacs syndrome) ... But I have symptoms not corresponding with these syndromes such as ear ringing , besides my symptoms change eveytime dosage is changes but they never get much better nor much worse... Any advice?