It’s been a while since I’ve posted last. Partially due to my thyroid keeping me fatigued a great amount of the time and additionally I have injuries to my lumbar spine that my dr recommends surgery on and the insurance carrier is dragging their feet.
Aanyway.. I got my most recent labs back and my thyroid is still a mess. I wish I could find my old post, but here are my current numbers.
Keep in mind that my TSH started at 75.847 (Reference Range 0.550-4.780) in September of 2021
TSH (Reference Range 0.45-4.5 ) - 35.3
Free T3 (Reference Range 2.0-4.4 ) - 1.8
Free T4 (Reference Range 0.82-1.77 )- 0.72
Antithyroid Antibodies (Reference Range 0-34 )- 142
C-Reactive Protein (Reference Range 0-4.9) 7.0
EBV AB CCA IgG (Reference Range 0-17.9) 41.5
** Dr did not follow up Epstein Barr results with IgM Test
CT scan showed- ” Prominent posterior right lobe w/ nodules” and “Enlarged right hilar lymph node “, that’s in the chest.
Ultrasound Showed- The thyroid gland prominent in size and heterogeneous in attenuation. Recommend correlation with thyroid function testing.
My Primary just scheduled me for an urgent appt with an endocrinologist who’s about an hour away due to chronically unsupressed TSH and now positive for Autoimmune Thyroid (Hashi’s) telling me that this happens in +88% of TC (thyroid cancer) patients. My primary has never done any of the other tests that you guys mention as being part of a full thyroid work up so I’m sure that the endocrinologist will order those tests next Tuesday. In the meantime do these numbers suggest anything to you guys? Is there anything I can do at home on my own to help my thyroid? Any information is appreciated, I literally feel so fatigued that many days I feel like it takes every bit of energy I’ve got within me to just breathe.
Thanks for reading and thanks in advance to anyone who can tell me more. 😔 Also- I can post photos of my lab results if needed, but can only upload one picture at a time.
Marla
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MsMagoo1970
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Thank you! Could you please tell me how I can go about locating it in the future? I’d like to update after Tuesday. My Dr suggested that I have a thyroid uptake test and a pet scan as well. Am currently waiting on pre-authorization to be approved by my health insurance.
above your reply , there is your name 'MsMagoo1970' and a little round picture ..... click on either of them and it should take you straight to your profile page... all your old posts and replies are on there. ( it may take you to something that says "update profile" first .. if it does .. go there and then click "view my profile " )
I’m currently at 125 mcg L-thyroxine daily. I wake up 2 hours early just to take it alone with water and go back to bed. I weigh 83.9 kg The only other medication I take is gabapentin 200mg at bed and cyclobenzaprine (muscle relaxer) 80 mg at bed time. No other meds and the only supplement I take is biotin 2500 mcg also at bed time.
“ Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid”-
This explains all of my “anxiety” or “Menopause” attacks (that’s what my dr called them) that suddenly stopped. I’d have racing heart rate, flushing and hyperhydrosis randomly for weeks on end, but never during my test times. Now that I have Hashi’s those attacks stopped completely. Incidentally- I’m 51 years old and went through peri-menopause in a matter of less than 6 months and complete menopause for the next year and a half. Is it possible that much of this was caused by hypothyroidism and some of my monthly cycles might return?
Ah. Then it’s possible it’s not just the biotin which could be causing the problem. Taking gabapentin also sends thyroid blood test results a bit screwy.
I can't imagine it's the biotin (unless it's erroneously decreasing my TSH which is still crazy at 34+) as I just started taking it about 3 weeks ago to try and combat the hairloss that I'm experiencing. I will, however, discontinue it immediately just to ensure none of my future tests are affected. Especially considering that my TSH numbers began at an incredibly ridiculous 75+ back in September 2021
trying to find the correct way to respond so that all of your comments are replied to. In researching what you've all commented regarding the effects of gabapentin and biotin on my test results I've learned that I absolutely need to stop both before retesting. However I've also learned that the way these medications/supplements DO affect test results tell me that my numbers are even more off than what my testing reports.
Also, I'd like to note that I just started biotin about three weeks ago and I started gabapentin in January for nerve pain related to a lumbar spine injury. My thyroid problem started in 2017 and beginning last year came back with a vengeance. So, again, the problem predates my current regimen of medication and supplemets. TBH i'm now more scared that my numbers are WAY worse than tests currently report.
The one thing I'm very intested in learning more about is this gluten intolerance I think tatty and slow dragon mention. and more than anything else I'd like to know of anyone's experience with incredibly high numbers like mine have had and what their diagnosis came to be as well as if their diagnoses was some kind of cancer whether thyroid or pituitary or both. I've scoured this forum and have yet to see a single person reporting numbers of TSH in the 30's let alone over 75; nor have I seen anyone's antithyroid antibody test results be even close to the +130 that mine are. I really appreciate all of your help and thank you for the time you're taking to help me to understand what's happening to my body.
Biotin does different things to test results depending on method used for test process, from a reply by diogenes the other day ... effect of biotin interference on most assays would be to give a significantly higher TSH , but not always, depends which test method was used . (see diogenes reply on this thread healthunlocked.com/thyroidu... he knows .. he invented one of the test methods currently in use for fT4 )
TSH of over 50 is not all that unusual . we do see reports here of over 100 reasonably often ~ even an occasional 140. Sometimes we still see TSH well over 30 even on Levo , usually when there is a problem with absorption of the Levo , or sometimes it does turn out test interference is the issue.
Antibody levels ,,again most peoples TPOab results are not 'really' high, but high numbers (in the thousands) are not unusual . eg I had >3000 , i've seen people on here with >5000/ 6000.
So IF biotin did affect this TSH, it is equally likely that your 'real' TSH is lower ... however your low fT4 and fT3 results also point to the fact that either your dose is not yet high enough , and/ or you are not absorbing much of it.
But some people do need to take a Levo dose more like 175mcg , even 200mcg.
So it could be that there is nothing more complicated going on than 'your dose still needs increasing'
ps. were the antibodies TPOab (Thyroid Peroxidase antibodies ) ,or TGab (Thyroglubulin antibodies) ?
If it helps calm you r nerves ~ my stupidly high TPOab's are not related to cancer at all ..just autoimmune hypothyroid, without a goitre ... ie. Ord's Disease ,rather than Hashimoto's Disease)
My antibodies are TPO as well. I’m discontinuing BOTH as of today, so going forward whatever numbers they are, they are. I think that my dr is concerned considering that I was treated with i131 back in 2017 and now the right lobe is back and messing with my life unrelentingly. Have you ever heard of anybody experiencing “sea legs” as a symptom of thyroiditis? My head feels as if I’m spinning from the moment I wake up until I surrender and lay back down. It’s not an ear or sinus thing. No medication has worked even though he prescribed antivert and I’ve tried OTC Dramamine and bonine.
even if we decide we don't totally trust your TSH result .. if your fT4 and fT3 results are even remotely correct .. then i'm not surprised you feel 'seasick'. Frankly i'm surprised you can still think in complete sentences and type them out.
If both fT4 and fT3 really are under range ..then you are expected to feel boggin' awful.
OMG! The brain fog! It takes me forever to type and respond sounding somewhat educated..lol…(I laugh because I don’t want to cry). I’ll start a sentence and find myself lost for a word and then think so hard about the word that I literally forgot what I was saying and oftentimes even the subject of discussion.
I have tinnitus times a billion, and at times it seems as if my tongue is too big for my mouth (please tell me that’s a thing with thyroid), I bite it often and I feel I’m even slurry from time to time. I have pretty much every single thyroid (hypo) symptom and tons of others (like the tongue thing, sea sickness and tinnitus) and I feel like my primary doctor views me as a hypochondriac. I mentioned the seasick feeling and he once tried to blame it on a uti 🤷🏻♀️Another VERY strange symptom I experience is the feeling like somebody is hugging me around (what used to be) my waist. Ever heard of the symptoms I’ve mentioned? Again I’d like to thank you for your time and help. I can say without hesitation that I can’t fit the weekend to end as it brings me closer to my first endocrinologist appt. My dr actually upped me to 125 mcg approx half way to my May labs bc I called back asking for T3 support (incidentally I asked for it back in Feb when I first posted ). I told him that I was miserable and was feeling worse instead of better. He told me he wasn’t comfortable messing with a drug like T3 and that he would refer me to an endocrinologist if my May labs didn’t show improvement. Here we are, they didn’t show improvement so he not only referred me to endo but he also sent me back to the lab with orders for TPO and T3 work up. Originally he ordered a TSH Cascade that concluded after T4 for whatever reason. When he saw that TSH went up (it was at 20’s at one point) and T4 tanked he ordered the TPO antibodies Free T3.
ETA- my dr also was the one who had me scheduled for an “Urgent Visit” with the endocrinologist. Without the call he made I’d have been waiting until July.
The common oral findings in hypothyroidism include the characteristic macroglossia, dysgeusia, delayed eruption, poor periodontal health, altered tooth morphology and delayed wound healing.[6] Before treating a patient who has a history of thyroid disease, the dentist should obtain the correct diagnosis and etiology for the thyroid disorder, as well as past medical complications and medical therapy."
macroglossia = yes you've guessed it
Will read rest of your reply properly in morning .... it's 'silly-o -clock' in the morning here .... i'm goin to bed
Thank you. Hope you get some rest. I’m pretty miserable myself today. Barely slept all night. It’s not even June and in NJ, USA it was 96 yesterday and 92 today. The heat is intolerable on top of everything else.
Sea legs, yes, I thought it was like vertigo, I would get really dizzy like I was at a great height and looked over the edge. It wasn't all the time though. Felt like the room was spinning sometimes. I had no detectable T3 or T4 when I was finally diagnosed so felt pretty shite. I also frequently had tinnitus but it has gone away now and my tongue was swollen and it made me snore and drool tons when I was sleeping, also corrected now too and it is a symptom of hypothyroidism, it's macroglossia.
I personally would push for a T3 prescription if you can get one, even if it's just 5 or 10mcg per day.
Also, splitting my T4 dose from the advice of another forum member here changed my life. Try splitting it over four or even more times per day, try to keep each piece no more than 25mcg.
Thank you for your help! I sincerely appreciate it. I’m praying that the endocrinologist prescribes me T3 to at least get some of my symptoms in check. I’ve been so sick for so long it’s really wearing on me.
Also not too sure I’ll be able to get new leans done before Tuesday am, but I did just leave an email for my primary that hopefully he’ll see on Monday morning.
My TSH was 314, I had undiagnosed end-stage autoimmune thyroiditis (Hashimotos), almost died, undetectable pulse and had CPR, was in hospital for a month, I was 32 then. I had no noticeable anti thyroid antibody levels because they had already destroyed my thyroid and so they had diminished. Apart from what everyone said here the best advice I can give is split your Levothyroxine dose over four times per day. That was the advice someone else gave me here and it made the world of difference to me. I take a dose in bed as soon as I wake up, and one in bed right before I sleep. The other two doses I spread out during the day as far away from meals as I can get them. I let the tablet dissolve under my tongue and don't bother with drinking them with water. I noticed that anything over 25mcg in one dose makes me feel worse overall.
😱 That’s a really scary scenario! So glad you made it through. How are you feeling now? What tests did they use to diagnose you? Also, what’s your dosage of levothyroxine and do you use a pill splitter to break your dosage down? Slow Dragon mentioned doing at bedtime vs am, did you try that first? What about the levothyroxine dose made you feel worse (like what kind of symptoms)?Sorry for all the questions, I’m just really confused after seeing this endocrinologist yesterday. She had no interest in testing vitamin levels that I see as part of a regular work up in this forum.
I saw the endocrinologist yesterday. She examined my thyroid physically and ordered another ultrasound. The only labs she ordered seem to be to look at my pituitary function, so she ordered ACTH, LH and FSH. I still have to run to the lab and have them done. The order for labs doesn’t include any special preparation so I wanted to check back here and see if you know of anything or any certain time I’ll get the most accurate read on those tests. She did not order any of the vitamin tests that everybody here recommended I request and to be honest I wasn’t really impressed with her. In fact I feel like she was pompous and rude and brushed off everything I asked about as if I’m crazy. She refused to prescribe T3 and raised my levothyroxine dose to 137.5 mcg
I feel so defeated and discouraged 🫤 She scheduled my next appointment for August 23 unless any of the labs or tests she ordered come back abnormal.
Any advice on prepping for the new labs she ordered would be appreciated.
So get vitamin D, folate, ferritin and B12 tested yourself
Plus coeliac blood test done BEFORE cutting gluten out
Like here in U.K., in USA you can get testing done yourself
Come back with new post once you get results
Thyroid levels should be retested 6-8 weeks after any dose increase
Remember to stop taking any biotin supplements a week before test
Test early morning and last dose levothyroxine 24 hours before test
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Lol... You knew I was going to ask you for recommended labs... Thank you. Also, I discontinued my supplement (biotin) as well as gabapentin until after my next labs. Thanks again 💖
Hi everybody, it’s been forever since I’ve had the opportunity to follow up and post. Due to complications following extensive spine surgery I’ve not had the time or energy to address anything else, however..I had an appt with endocrinologist last week and wanted to share my latest lab values and medication changes and get some feedback from you guys.
Last we spoke my Levothyroxine was upped to 150 mcg daily. I’ve been on that dose since about July of last year. Additionally I just came off prescribed Vitamin D 52,000 units every Sunday for 6 weeks.
I had labs completed on 03/20 and I’m floored at the results. Despite raising my L-thyroxine I still have no T3. I’ve been so miserable and my numbers explain pretty much all of it. Since I’m unsure of whether it matters, I suppose it’s worth mentioning that I had COVID back in January and had a recent bout with Epstein Barr Virus which I’m negative for now. Here are the numbers-
03/20/23 Labs
TSH: 74.9 (Reference Range 0.45-4.5 )
T4 Free: 0.20 (Reference Range 0.82-1.77 )
T3 Free: Trace (Reference Range 2.0 – 4.4 )
TPO: 142 (prior test result) : (Reference Range 0-34)
Thyrotropin Receptor Ab, Serum: 1.1 (Reference Range 0.0-1.75 )
Vitamin D 25 Hydroxy: 19.3 (Reference Range 30-100 )
Vitamin B12: 167 (Reference Range 232-1245 )
Folate: 6.9 (Reference Range >3 )
Ferritin: 60 (Reference Range 15-150 )
Calcium: 9.7 (Reference Range 8.7-10.2 )
EBV Ab VCA, IgM: 36< (Reference Range 0-35.9)
EBV Ab VCA, IgG:65.7(Reference Range 0-17.9)
EBV Nuclear Antigen Ab,IgG: 80.5(Reference Range 0-17.9)
Since receiving these results my endocrinologist discontinued levothyroxine and now I’m taking (T3) Liothyronine 25 mcg daily that they plan to up by adding 5 mcg every week. Additionally they prescribed Calciferol (vitamin D) 50 mcg daily.
Can anybody tell me if this is the “Gold standard” for prescribing T3? And other than medication for high cholesterol are there any other medications or special instructions for T3 medication? There was nothing else on the patient drug guide sheet. Also has anyone had experience with COVID and/or Epstein Barr Virus affecting their lab results?
Thanks for reading my novel and hope you’re all staying well!
Sorry to hear about your spine surgery, and I hope it went well. You previously have sounded very hypo symptomatic. How are you feeling now?
I don't think I've ever seen a 'trace' of T3 result before and to have that high TSH when medicating thyroid hormone replacement meds puts doubt on those TFT’s. Above you’ve read about the possible effects of biotin but there are numerous other assay interferences such as macro-TSH, and various anti and autoantibodies. Have you had any additional tests and assay method comparisons to substantiate these results?
TRAb's are ok but TPOAb's are still elevated. Are you gluten free? Have you tried supplementing selenium? Supplementing Vit D to address that deficiency will help autoimmune issues too, and optimising other nutrients will help thyroid meds work better.
T3 is very powerful and can be bumpy. There are members medicating T3-alone on doses between 25mcg and 70mcg and yes, its usually introduced slowly by raising in weekly/two weekly 5mcg increments. It has a short half life and many find splitting the dose into two (or even three) a day helps even out the peaks and troughs, and prolong it action.
Medication for high cholesterol is controversial. Members often see high levels of the bad cholesterol drop as thyroid hormones optimise.
I should add, I was unsure of what “Thyrotropin Receptor Antibody, Serum” test is and now that I looked it up and see it’s a test to confirm HYPERthyroidism I feel like somebody clicked the wrong box when entering my lab orders. 🙄
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