Test results please help!

[Hey1975]

Just had this test done TSH reflex and I'm so confused. Dr. said my TSH is high and my Free T4 is normal. I was taken off levothyroxine on Oct 22,2022 bc my TSH was 1.7 and was having hyper symptoms. That was 26 days ago. So is this right? Is this my actual TSH? I'm really sick and he wants me back on levothyroxine right away but I'm afraid this isn't right. Could my TSH go 29.277 in 26 days? Please HELP!!! THANK YOU.

[tattybogle]

yes. i think it's possible that TSH could rise that fast , several yrs ago mine went up to 7ish after an experiment of approx 10-14 days without any Levo (and it was usually very low 0.05 ish, although i don't know for certain what it was immediately before stopping levo)

TSH tests can occasionally give falsely high results for several reasons ( eg. from assay interference , or from taking biotin supplements, and a few other reasons ) .... but if you get a high TSH straight after levo was stopped , then the most obvious reason is because of the sudden drop in fT4 levels rather than anything else.

So if TSH is correct ,restarting Levo is necessary.... and fairly urgently.

In circumstances where the accuracy of a TSH result is in doubt . then the GP could ask for it could be tested again using a different test method (to rule out assay interference), after making sure no biotin supplement was being taken. you could discuss this with GP .

I was more or less a zombie after 10 ish days without any levo ... so i can imagine you feel truly awful after a month.

[tattybogle in reply to tattybogle]

was just looking at your other post , and i gather you had difficulties on levo, and were getting some hypo and some hyper symptoms.

The lovely folk on here are very experienced in helping people get to the bottom of problems taking thyroid hormone ,, so you've come to the right place ,

hang in there. you are not alone .

sorting out these issues can take time , but with a methodical approach they can usually be sorted .

You've had a horrible year , and a big shock ,, but the sun is just coming up here and the sky is pink .... so here's looking to the future , when i really hope you will be feeling better than you do now . and 'everything else' will be easier to cope with once your thyroid condition is managed well.

Best Wishes ,Tat

x

[Hey1975 in reply to tattybogle]

Thank you so much for your help. I just went back over my daily journal with food and medication and I have had Biotin supplements. I had a multivitamin with 30 mcg on Sun 11/13/22 and on Mon.11/14 and Wed.11/16 I drank a nutrition shake that has 7.5 mcg of Biotin. So now what? I had no idea about this there's so many things... This test was taken on Thur.11/17 If my TSH was 29.27 and FT4 in the normal range what does that mean for me now? Do I still continue to take my levothyroxine? Please lmk what you think? I am so thankful for your time and help. I appreciate everything!!

[tattybogle in reply to Hey1975]

i don't know if that's a big enough amount of biotin to be of any concern, but if i was feeling as unwell as you are , i'd definitely keep taking the levo for now ... and in future just make sure your thyroid tests are done after not having biotin for ...erm , i can't remember how many days ? .. SeasideSusie or SlowDragon will know.

do remember that all your previous tests were done without you knowing anything about avoiding biotin , and we have good reason to suspect that you ARE genuinely hypo because we know you just stopped levo .. being severely hypo and not taking levo will lead to feeling very unwell, very quickly. So in your case i think it's important to take the levo, see how you feel over the nexy few weeks and see what the next blood test says when you know you've ruled out biotin interference .

[Hey1975 in reply to tattybogle]

Okay thanks I'm taking the 25 mcg of levothyroxine until I get to the doctor this coming week and let them know about the vitamins and ask for retest. I'm praying this helps and doesn't send me backwards again. I don't have the strength 😥 thank you so much for all the advice I honestly don't know what I'd do without y'all right now. XOXO

[SeasideSusie Remembering in reply to Hey1975]

Hey1975

I'm doubtful that the small amount of biotin you've taken will cause any problem with the test results. Advice is to stop biotin for 3-7 days before any blood test. 3 days is enough for the small amount in a B Complex, eg around 400-500mcg, and larger amounts such as 5mg or 10mg in a stand alone biotin supplement or hair/nail supplement should be left off for 7 days. There are 1,000mcg in 1mg.

[Lalatoot]

Don't be scared to start levo again. I had great problems starting levo but things did get easier. I needed combination levo and lio t3 in the end but you need to start somewhere and levo is what is often offered I started on 25mcg daily and felt worse. This is common because the dose isn't high enough.

You said you felt hyper. I can say from experience as I was hyper, had treatment and became hypo, that the symptoms of hyper and undermedicated hypo can be the same. It is not like those clearcut lists of symptoms you read on the internet. When I am undermedicated hypo I lose weight, have palpitations, my heart rate increases. That is why blood tests are an important guide.

When I had to increase my levo dose I found it best to go slowly, sometimes 12.5 MCG initially rather than the suggested 25mcg. I also found it easier to tolerate levo if I split my dose taking some morning and the rest at night. I have never taken a full dose in one go.

We are here to help. You will usually find someone one this site who has been through what you are experiencing. You are not alone

[Hey1975 in reply to Lalatoot]

I was put on levothyroxine 50 mcg on 10/6/22 he said in 2:weeks increase to 100 mcg. So by 10/22 I found myself in the ER with high blood pressure and palpations it was horrible and the doctor decided to recheck my level and that day my TSH was 1.7 my T3 was 1.1 so with everything going on he said stop taking the levothyroxine and that's what I did that day. He also said it would take awhile about 30 Days before we could retest bc it stays in the system longer. And now knowing that I have had Biotin I'm not sure what to do. I just feel awful and I'm so thankful for everyone here that is helping me figure this out. Also my kidney function is low like 54% so I'm having lots of pain from that. They say I have zero infection and there's nothing there but something is wrong. When I took my 25mcg of levothyroxine yesterday about 5-6hours later the pain got better but it's almost time for my dose again and I'm in terrible pain again. So it seems that the levothyroxine could be helping. Please lmk what you think. I can't thank you enough!!!

[Lalatoot in reply to Hey1975]

Hey, no wonder you were so ill. those increases are insane - far too quick. Recommended on here are increases of 25mcg every 6 - 8 weeks for folks that are ok with levo. Some take it even slower and increase very gradually.

Keep taking the levo.

When I was undermedicated on levo I ended up housebound and in my bed for most of the day - for nearly 2 years.

You mentioned a multivitamin in your post. Multivitamins contain things we don't need and some things which block the action of others. It was a multi-hit containing iodine that sent my system haywire. It is better to get vit D, B12, ferritin and collate levels checked and then buy individual vitamins to support any deficiencies.

Biotin isn't bad to take. It is just that you need to stop it several days before a test as it can interfere with the testing process.

I'll be honest, you are in for a rocky ride. Until you get on a high enough dose of levo you will have unpleasant symptoms as the body is all out of kilter. the tank is running on empty! There is no quick fix and you need time to heal, for the body to adapt and for your thyroid hormone levels to slowly increase. Low and slow is the only way to do it. It is time to take care of yourself. Things will improve.

[shaws Administrator in reply to Lalatoot]

The majority of members on this forum seem to have GPs/doctors who are not aware of the effects patients can develop when first taking thyroid hormone replacements. Sometimes it is due to the GP not understanding the purpose of the thyroid gland.

I have had some stupid comments from a GP and I told him he was wrong. (I diagnosed myself in 2007 after GP phoned to tell me I had no problems and I've put my story on my 'page' and if you press on my 'name' you can read if you wish.

[tattybogle in reply to Hey1975]

blimey .... no wonder you feel so unwell.

Increasing / or decreasing thyroid hormones needs to be done sensitively ,preferably in small /subtle adjustments ... and the body needs to be allowed time to adjust to each change (the TSH, and the symptom response, can both lag behind dose changes by quite a long while , taking several weeks to show the true effect of any dose change , everything need time to settle )

You GP seems to have been rather heavy handed / trigger happy with the changes they have made ,and i suspect your body doesn't like it.

increasing to 100mcg after just 2 weeks on 50 mcg was almost certainly 'too much too soon' .. which would explain the hyper feelings .

It would be interesting to know what was the reasoning behind your GP prescribing this increase so quickly ? ... a blood test after just 2 weeks on 50mcg is pretty much useless ....you need to be on a stable dose for 6 weeks before any TSH result will be reliable.

It would be more usual (and more sensible ) to have waited for 6 weeks on 50mcg and then test , and then possibly increase to 75mcg and so on.

Some people can handle going straight into their 'full' dose of Levo pretty quickly, and some newer guidelines do tell GP's' to do this , because it saves time / money ,, but not everyone can handle it .

When you said about the 'horrible ?kidney pain without any infection' .. i did initially wonder about overmedication. (this pain happened to me when i was overmedicated. .... everyone thought i had a kidney stone but nothing there, and they found calcium oxalate crystals in my urine ) .....but because you had hypo bloods not hyper , i didn't think to mention it . However , now i know how violently your dose has been yanked around , i do wonder if the pain is related to these changes in Levo dose . (Mine gradually went away over a week or so ,once my dose was lowered a little bit .. i was on 150mcg , and dose was reduced to 125mcg )

[SlowDragon Administrator in reply to Hey1975]

50 mcg on 10/6/22 he said in 2:weeks increase to 100 mcg.

That was too fast an increase in levothyroxine

Many people would find increasing from 50mcg to 100mcg too big an increase and much too soon after starting on levothyroxine

Many many people find they need to increase SLOWLY

Suggest you start back on 50mcg ….take on empty stomach…..either early every morning or last thing at bedtime

Retest thyroid levels - test early morning and last dose levothyroxine 24 hours before test

Assuming test shows you are still hypothyroid, then increase to 75mcg daily and then wait 6-8 weeks

Retest thyroid levels

Meanwhile test vitamin D, folate, ferritin and B12 levels

Vitamins are frequently very low when hypothyroid and likely to have crashed even lower having stopped levothyroxine

To tolerate levothyroxine we MUST have GOOD vitamin levels

It typically takes 6-12 months from starting on levothyroxine and getting dose fine tuned and all four vitamins optimal

Approx how much do you weigh in kilo

Guidelines on EVENTUAL dose levothyroxine likely to be required is approx 1.6mcg per kilo of your weight per day

But some people need more, a few people need less

[Hey1975 in reply to SlowDragon]

I knew something was really wrong but I had no idea about all of this. I was only on the 100 mcg levo for 2 days when I was taken to the ER for my blood pressure going high and palpations and I was literally urinating every hour day and night. So I went back to that doctor and he saw the ER Labs and said stop taking it and I've been off since 0ct. 22, 2022. He gave me a beta blocker for the palpitations and blood pressure and said just come back in about 36 days and we'll retest and possibly get thyroid ultrasound. I have no medical insurance and no money so I've had to go to the ER since then. I thought all this time I was still hyper but I'm having both hypo and hyper symptoms so I'm not sure and that's also why they did this TSH Reflex And I had an MRI with contrast on my neck and soft tissues at the ER on Thursday 11/17/22. I've got pain in my right side lower (flank) area that also spreads around lower right back. Something is not right. It hurts & when I urinate I get super cold & my head starts to feel weird. I have all my labs if it would help but I'm not sure I know how to get it to you unless I post it in pieces. It's long. CBC, CMP, UA. I weigh 68.04 in kg. I'm 150 pounds. So thankful for your time and help. XOXO

[SlowDragon Administrator in reply to Hey1975]

Exactly which beta blocker?

(Propranolol slows uptake and conversion of levothyroxine and is used to treat hyperthyroid patients)

so looking at your weight ….you may well EVENTUALLY need approx 100mcg levothyroxine per day

But starting SLOWLY is essential for many people

Waiting 6-8 weeks after any dose increase, then retesting before considering increasing dose

Standard starter dose levothyroxine is 50mcg

But if you would rather only take 25mcg for few days….see how that goes, before increasing to 50mcg

Then wait 6-8 weeks at that dose before retest

[Hey1975 in reply to SlowDragon]

Atenolol 25 mg once a day. And Prozac 10 mg. Once a day. After about 2 weeks I was able to start taking only the atenolol like every other day and now it's just as needed. The Prozac 10 mg I've only taken it maybe 5 times, I don't like the way it makes me feel so I tried not to take that one. I'm grateful for all your help and advice!!! I really thought the iron supplement I took did something bc nothing started especially my pain in right side and flank until after I took that. (I posted a picture of it.) But the ER says that one dose wouldn't hurt. Yet I've read 65 mg of iron is extremely dangerous and can cause serious illness but if your in the emergency room and there telling you, it's not that there's not much I could do. The pain gets really bad after a bowel movements and anytime I eat or drink. MRI found nothing wrong with anything in my abdomen. The did say I could have an bleeding ulcer but I've never had stomach problems or reflux absolutely nothing like that so don't think stomach ulcer. But I have been under enormous amounts of horrible stress and constantly being upset/crying alot!! I also feel faint like I'm dizzy and lightheaded so I've been checking my blood sugar all thru the day and night. I'm not diabetic but when it's between 80-100 which is normal I don't feel normal it feels super low to me. And my blood pressure has been staying 100/68 p.75 & 108/73p.74 & 112/73 p. 71 it's gone high once or twice while before & during ER visit. All of this is so much!! I'm so sorry for asking for so much help and advice. The ER has basically told me to not come back and I'm very scared with all of this. They say I'm not dying find a doctor... I feel like I'm nothing more than just a burden on everyone which is probably why my husband left, Im taking up to much space and air in this world. I really try to stay away & not bother anyone. That's why it took so long for me to post on here, I was afraid of bothering ppl with to many questions or concerns. I genuinely appreciate EVERYTHING!! XOXO

[shaws Administrator in reply to Hey1975]

There's no need to feel you are 'bothering' members as the majority on this forum have found it necessary to communicate with others who have dysfunctional thyroid glands and who have improved their health due to help/advice from members.

I have had some stupid comments made by a GP and I told him he was wrong. The medical professionals (not endocrinologists) have no idea of how best to diagnose/treat patients.

I have written some background of my journey to be diagnosed and you can click on my name and - if you wish - read my journey to be diagnosed.

[Hey1975 in reply to shaws]

I think this group is highly knowledgeable and so so compassionate and kind. Many times I'm simply reading and learning about as much as I can on here but when I finally posted I was amazed by all the help and advice I was given. I was hurting and scared and fairly quickly someone replied & then others and it helped immensely. I'm very thankful. I'll definitely be checking out your journey soon. Have a wonderful night. God bless.

[Buddy195 Administrator]

Like Lalatoot I get ‘hyper like’ symptoms when either my thyroid levels or key vitamins are not optimal for me. I’ve even ended up in A and E with palpitations, tremor and fast pulse. For me, it took ages to tolerate Levothyroxine & I need to increase super slowly, as adjustments can also cause adverse symptoms. I’ve become more of a tortoise than a hare now, adding 12.5mcg Levothyroxine alternate days at first until tolerated. I’ve become a dab hand with a pill cutter!

[SlowDragon Administrator]

TSH was 1.7

T3 was 1.1 

Please add ranges on these results

Was test done early morning and last dose levothyroxine 24 hours before test

Multivitamins are never recommended on here

Suggest you stop taking these. Most contain iodine not recommended for anyone on levothyroxine

Kidney pain, could be adrenals.

When hypothyroid adrenals try to compensate for lack of thyroid hormones by dramatically increasing adrenal hormones. Can cause sharp needle like pain in kidneys (adrenal Glands sit on top of kidneys)

[Hey1975 in reply to SlowDragon]

It was done in the emergency room in the afternoon time and I was rushed in so I wasn't fasting or anything like that. It was 2 days after starting the 100 mcg levo. I thank you for sharing this with me. My pain is sharp at times and dull but constant other times. Not sure if it makes any difference but the ER doc from Thursday 11/17/22 said kidneys and adrenals looked good. I did have MRI with contrast on my abdomen and nothing was there. No kidney stone or anything. So right now I'm just in pain and don't know why. Thank you again. XOXO

Test

[DippyDame]

First point, TSH is not a reliable marker.

thyroidpatients.ca/2021/07/...

To evaluate thyroid function you need to check at the very least TSH, FT4 and FT3 but ideally also vit D, vitB12, folate, ferritin and thyroid antibodies TPO and TG

Your FT4 may be within the ref range but that is only part of the story....what you need to find is the actual point within the range where you feel well

However you don't mention FT3 which is the active thyroid hormone and essential to every cell in the body, if this is low ill health kicks in.

Do you know if your system adequately converts T4 to T3?

I suspect your cellular FT3 may be low for some reason.

Have you had thyroid antibodies tested to check for thyroid autoimmune disease/Hashimoto's....this can cause thyroid levels to fluctuate which. consequently will change TSH.

The best way to start is to have a FULL thyroid test...as listed above.

This will give a fuller picture of what is going on because without those lab results you are more or less just guessing at the problem

I'm afraid there is no quick fix for thyroid disease...but there is normally a fix!

It will take time and patience and repeated dose changes as you work out, by a process of elimination, exactly what is going on.

As a result of what turned out to be a rare thyroid problem which left me barely able to function it took me several years to find my therapeutic dose....so there is a fix! You just need to methodically work through the clues.

Ah! Your latest post has just popped in....big clue there!

Your medic .....was put on levothyroxine 50 mcg on 10/6/22 he said in 2:weeks increase to 100 mcg.

No wonder you feel unwell this is shocking advice! You have been medicated too fast and too high ....this is like putting high octane rocket fuel in an old wrecked car!!

This medic isn't going to help you get better.....can you consult someone else who knows what they are talking about!

Do you have your diagnostic ( first) lab results... that revealed hypothyroidism? If so post them...they are your first clue.

It is going to take time but with the correct treatment you will recover.

[Hey1975 in reply to DippyDame]

I have not had full thyroid labs done yet. He only cared about the TSH. And I do NOT ever plan on going back to that doctor again. I'm in more pain and more messed up than I was before or so it seems. I went to get help but I'm not sure that's what happened??? I'll see a new physician on Monday morning but I don't know if I can handle this pain in my right side (flank). It's taking my breath away. My original test was only TSH 17.86 thank you again. Xoxo

Original TSH test. 03/01/21

[DippyDame in reply to Hey1975]

Good, hope the new medic is more clued up than the one who has messed up your treatment

If this new one knows their stuff then they will look beyond TSH and test you fully.

Focus on TSH is leaving many patients unwell.....examples all over this forum

Your pain may very well be connected to under/ wrong thyroid medication. Is this the first episode?

T3 affects every part of the body...eg a few years ago I had excruciating cocyx pain... until my T3 was optimised.... and about a year ago I ended in A&E with severe abdominal pain. The medics did tests and could find nothing wrong! I had reduced my T3....pain improved when I raised the dose again!

Most medics just don't understant the importance of optimal thyroid levels to the whole body....they focus on TSH and let the rest go hang.

You have been cruelly treated....

Suggest you push for ( beg if you need to!!!!) a full thyroid test as described above.

The answer most likely lies there!

Almost impossible to comment with any accuracy without a combination of lab results and clinical evaluation ( signs and symptoms/ how you feel)

Best of luck

[Hey1975 in reply to DippyDame]

I am taking notes!! I pray I get the correct care as well. Several clinics only look at TSH and nothing else so maybe this new doctor will hear what I'm saying. Prayers please!! Thank you so much xoxo

[SlowDragon Administrator in reply to Hey1975]

TSH over 10 and you should have been started on levothyroxine

Request new Dr test vitamin D, iron and ferritin, B12 and folate and thyroid antibodies for autoimmune thyroid disease

Cortisol and adrenal testing too perhaps

Has ER tested for urinary tract infection (UTI)

UTI extremely common with hypothyroidism

[Hey1975 in reply to SlowDragon]

I'm taking all this information with me so thank you so much. Yes I posted my UA but I did something wrong. I was told UA was fine.

[shaws Administrator in reply to Hey1975]

My TSH was 100 and GP phoned to inform me that I had no problems!

Thank goodness for Thyroiduk as at that time there was no healthunlocked/thyroiduk.

[Hey1975 in reply to shaws]

I've only really just begun my thyroid journey. I've been so ill for so many years but had no idea what was happening. And I somehow thought if only I knew what was wrong it could be treated. So I finally know and every single doctor so far has no idea about this. I waited for sooooo long and I'm not letting these doctors keep me from getting well. I have been told take your thyroid medication and see you in 3 months. What?? Nooo. So I desperately wanna get BETTER!! Finding a doctor just seems impossible but, I serve a good good Father. I'm so grateful for the blessings the Lord has given me. Including this online group. Have a good night. Xoxo

[Hey1975 in reply to SlowDragon]

I took this supplement (one) time on 11/05/22. It's 65 mg. Carbonyl iron and 125mg. Vit. C. I started having this pain shortly after taking this. I was also told I could be iron deficient along with other deficiencies. The ER said this had nothing to do with it but at this point Im not sure they really know...

125mg vit. C and 65 mg carbonyl iron

[SlowDragon Administrator in reply to Hey1975]

never take iron supplements unless tested full iron panel test and found to be deficient

[Hey1975 in reply to SlowDragon]

I am learning the hard way. I honestly thought a doctor wouldn't do anything but good. How naive...

[shaws Administrator in reply to Hey1975]

If a doctor phoned to tell me I had no problems when my TSH was 100, I suspect many be unaware of how to diagnose/treat someone who is clearly hypothyroid.

Immediately after he phoned me and I had no clue what he had checked, I went straight to hospital as I had requested a blood test form several weeks before. and the hospital then phoned GP to ask why I had another blood draw as I was hypothyroid.