I’m 60 years old and have known about my thyroid issues since 2010, at least the start of the issues. I confused as to what is going on with my thyroid. I 2012 radioactive reuptake showed diffuse reuptake at 66%, and was told “indicative of Graves’ disease “ however, negative antibodies. My TSH goes low, lowest I’ve seen is 0.19 and crazy enough is my T3 and T4 will run low as well, confusing. I spent about 3 years on Tapazole 2012-2015/16, guesstimate. Long story short, I have other labs as well and am now seeing an endocrinologist that says my thyroid should have been removed years ago, It’s about 18-20 cm across when adding the two lives together, I’ve had biopsies and if of course ultrasounds, he said the surgeon would order a cat scan prior. Family history is strong for Hashimoto and my grandmother passed at a young age of 32 and thyroid and parathyroid were not present at autopsy, also a pituitary issue as I have a pituitary adenoma non functional 7mm micro. Any help, any questions, any labs that may be important let me know. I have hereditary hemochromatosis as well.
Thyroidectomy or not? Thyroidmegaly and multi m... - Thyroid UK
Thyroidectomy or not? Thyroidmegaly and multi modular goiter.
Welcome for forum.
“radioactive reuptake showed diffuse reuptake at 66%, and was told “indicative of Graves’ disease”
What is normal expectation of uptake?
What thyroid antibodies were negative? There are many types. With family history all should be tested.
TSI - Thyroid-Stimulating Immunoglobulin (signifies hyper Graves)
TRab - TSH receptor antibodies (TRAb) (signifies Graves)
TPOab (Thyroid Peroxidase antibodies) (autoimmune, Hashimoto’s & also present with Graves)
TGab (Thyroglobulin antibodies) (autoimmune, both Hashimoto’s & Graves)
Were you taking Tapazole when TSH, T3 and T4 were low.
When NOT on antithyroid medication do FT4 & FT3 rise ABOVE range?
TSH is unreliable, especially if once hyper and If pituitary is not producing TSH you thyroid will not be stimulated to produce sufficiently ( secondary or central or hypothyroidism)
The thyroid sounds very swollen, do you mean the lobe are pushed together? Sometimes the physical size of thyroid make surgery necessary, (regardless of function) does the swelling impact on breathing, swallowing, voice or cause pain?
Have iodine levels been checked?
What are exact results & ranges TSH. FT4 & FT3 (Free measure is useful, total measure are not as helpful)
Have folate, B12 & Vitamin D been tested?
Are your iron store, ferritin & iron level well controlled ?
Thank you for your prompt response and your questions, these are very helpful! I do have many labs to add to my post and I will as hopefully I can makes some sense out of what’s happening with my thyroid. I can tell you per my endocrinologist words that he said my thyroid is “wrapping around my esophagus “ I will also note my last ultrasound results per radiologist as well. I had a B12 level ran in 2012 which was when the TSH was found to be low as well as D level, B12 1700, yes very high, rechecked and gradually decreased without any changes from my side, Vit D was around 20 which was supplemented and gradually increased to normal, I try to remember to take D3 daily. I have updated labs I’ll report here as these old as well as folate and all the antibodies which are “negative”, the only problem I have with my hemochromatosis is my transferrin saturation % tends to be high, as high as 84% and I’ll have phlebotomy to normalize blood, I’ll tend to have anemia of chronic disease as well which is not treated with iron of course. Honestly, labs are not showing what is wrong. My wbc is always on the low side even when I’m very sick, even when I had osteomyelitis in my spine plus abscess in canal, as well generalized illness, I do not run fevers either. Long list of abnormal signs with no answer.
I was told normal reuptake was 35% or under I also did not have any “hot or cold “ spots either. I’mm totally confused, hopefully I can find some help here! Thanks again.
F TSH
0.725
0.450-4.500 (UlU/mL)
F Triiodothyronine (T3),
Free
1.5 L
2.0-4.4 (pg/mL)
F T4,Free(Direct)
0.93
0.82-1.77 (ng/dL)
I had these thyroid labs drawn about 3 weeks ago, I’ll have to log on to my patient portal to copy the results of the remaining test my new endocrinologist had ran. Thanks again!
Wrapping around oesophagus is the “normal” location of thyroid, but If it’s very swollen it can compress your structures causing physical issues.
Goitres can also grow downward (sub-sternal) and if growing beyond a normal area this would also be detected by ultra sound.
Do you have any recent B12 & other key nutrients. This is important as very low nutrient can lower TSH. & alway add lab range - ranges & units vary between lab so range needed to interpret accurately.
Do you have stomach issues? Poor absorption of nutrients can be sign of this- Have you had test for coeliac? Test first, even in negative for gluten allergy might be worth a strictly gluten free diet as won’t show gluten intolerance.
You sound like you have a lot of issues going on. Low white cell count & no fevers means no response to infection. Do you have signs of inflammation? CRP test?
Uptake scans plots the function of the thyroid, so if a area is non functioning it would show as a cold area, but if a nodule was hyper functioning uptake would be concentrated and show as “hot” or toxic nodule.
Your scan show a similar pattern diffusely throughout thyroid showing the thyroid is functioning the same throughout but at an increased level.
Your current results
TSH. 0.725. (0.450-4.500 (UlU/mL)
FT3 1.5 (2.0-4.4) ( pg/mL) FT3 is the active thyroid hormone it’s 20.83 % below range
FT4. 0.93. (0.82-1.77) (ng/dL). Is very low in range at 11.58% of range.
You stopped taking antithyroid medication many years ago, this shows very low thyroid levels & you must be feeling very unwell.
Have they been this low before or is this recent?
Unless this is a 1 off low result, You need replacement hormone to bring up levels.
Most are well when FT4 is in top 3rd of range and FT3 at least half way. Doctors can’t ignore low levels because TSH is also low.
Yes, i feel awful all the time honestly, can’t really remember a time when I felt normal or myself. I don’t have general energy for anything. Also, my thyroid labs haven’t been normal since they’ve been checking them. That’s always been a confusing part of this and the diagnosis of hyperthyroidism was always a question of mine as well, confused, yes I was and still am. That’s one reason when he suggested to have it removed I thought what the heck, I can’t get a reasonable diagnosis if there is one so just do it and take some medicine daily and have labs drawn but honestly I do know there’s much more to it than that so I’m second guessing myself and wanting some genuine answers and I’ve been following these threads for a long time. What criteria in your opinion would suggest the need for a total thyroid removal especially after only seeing for the first time? Thanks, have a great day and yes my labs will be posted soon with their ranges.
Sorry you feel awful, are you saying your thyroid hormone (FT4 & FT3) have always been low?
Terrible if doctors have focused on low TSH.
The TSH is a pituitary hormone and signals thyroid to produce. If your pituitary adenoma is affecting the secretion of TSH then this may be the issue.
If the thyroid is removed there will be no hormones from yourself. They will be entirely from what replacement is given, but doctors often reduce replacement until TSH is in range, so if your TSH doesn’t respond you are going to have the same issue - unless your doctor can assure you (in writing) the TSH won’t be the focus. Your FT4 & FT3 level will be.
This signalling is a secondary issue as many with secondary hypothyroidism have no issue with the thyroid (the primary issue)
When there is a primary issue with thyroid then swelling commonly often occurs. As it’s struggling to produce. Adequate replacement can reduce swelling but by sound of it the thyroid is growing where it shouldn’t & this means surgery may be required. If your goitre is visibly large, or shows internal compression from scan image / report, it might prompt a doctor to suggest surgery.
I have 1 more -distant thought- that came to my mind from somewhere (something I read) so I’m not very knowledgeable about this condition - but your comments about your grandmothers parathyroid issue, & you having a pituitary & thyroid adenoma & being “prone to nodules” struck a cord with me.
As I said limited knowledge so very probably way off but I’ll mention it as you may be able to read further and see of you think there’s any possibility - it’s something you can push for further tests.
Or someone with better knowledge may come and tell you it’s completed unrelated - which may be correct.
Multiple endocrine neoplasia - There’s several types & it’s genetic so with your family history worth reading up on.
Hi Purplenails, just a note to all that have been responding to my post. I’m still here, just a bit more overwhelmed but I am taking your thoughts and questions very serious and have been doing what I can to locate labs etc, which I do have from various sources. Bare with me as I’m super overwhelmed and I have major focus and problems with concentration, geeeeeeeeezers, if I were to tell you what my work history was you would not believe me I’m sure as I’m as scattered brained as can be at this point and there’s no way I could’ve done the work that I did, I can save that for later. I believe I’ve decided to postpone the thyroidectomy for the time being for many reasons. I do believe I’d be in worse condition with it gone than the risk with it. I have researched a couple years ago about the MENS that you had mentioned and I found some things I felt were worth furthering my research then so I’m ever so glad you mentioned it to me so now I’m back to it. So simple but complicated! I have so many mutated alleles as well and I’ll list those soon but if there’s any particular ones of interest let me know and I’ll list if I have them. One of my siblings (not trying to be hateful to me) laughed a little bit and said you sure got the blunt end of all the bad genes, or at least the mutations. That’s a very complicated topic, I find genetics very interesting, and as you can see here’s, I don’t focus, my brain has jumped from here to there, not making a hill of beans of sense, up until a couple of years ago I was not as unfocused as I now. Thank you and I’m currently working in some labs trying to make them clear with ranges etc so I can post, let me know specifically what would benefit you in possibly helping me out cause I have a lot of different labs I’m listing. TY
Purplenails, hi just an update from a year ago! I had my TT august 01,2024 and oh what a monster it was, I’m waiting on pathology results, have been started in Synthroid and unfortunately have to chew lots of tums daily and take calcitrol as well, doc says short term only on tums. It’s amazing how much better I feel with having my thyroid out and I’m assuming that’s what was causing all my grief, but also the low calcium level too as I noticed on my preop labs my calcium levels were below range and that will cause much ill feelings as well. Anyway, I wanted to follow-up on this thread and let the group know I did have my much needed surgery, thank you for all your support and help and I know I have a long journey ahead but at least I have a starting point now, have a great day and thanks 😊!!!
This is a guess but I think it’s possible the pituitary issue has been a contributory factor to your problems all along. Your TSH isn’t rising despite you having insufficient levels of T4 and T3.
Do you remember what your levels of TSH, FT3 and FT4 were back in 2010? I have to assume that at some point your FT3 and / or FT4 levels were raised back in 2010, because they put you on tapazole. At least, I hope that’s what happened and that this wasn’t solely a pituitary issue all along.
My TSH goes low, lowest I’ve seen is 0.19 and crazy enough is my T3 and T4 will run low as well, confusing.
Actually, it isn’t as confusing as you might think. Sometimes, in cases of Graves, TSH never returns to normal—it stays much lower than it should be and doesn’t rise in response to a lack of thyroid hormone in the bloodstream like it should. If it doesn’t rise, the thyroid isn’t prompted to make more thyroid hormone and you become hypothyroid with a low TSH.
It’s sadly not uncommon for GPs and sometimes even so-called endocrinologists not to realise this can happen and for them to refuse you thyroid hormone replacement. But it’s well-documented in the literature as something that can happen with Graves.
You would appear to need thyroid hormone replacement rather badly.
As for whether to have a thyroidectomy, sorry to say it does rather sound as though you may eventually not have a choice.
Thank you so much! I’m really trying to grasp this thyroid issue, honestly, for years I have researched and researched and I’ve thought as well that I needed thyroid hormone replacement therapy but the endocrine docs here didn’t see it that way. Funny as it is I saw an endo doc “1” visit and the approachment was a bit uncomfortable as the doc said there was no reason to have any fuss or confusion about my thyroid as there was nothing wrong with it, of course, I felt so humiliated and more confused as I know something is happening and I promise, labs and ranges will appear here soon. Another thing that is important is this endocrinologist I’m currently seeing that has recommended having the whole removed, I’ve only seen him “1” time, he did spend a couple of hours with me explaining his reasons for this. The number of nodules got one and size of them, the actual look of my thyroid on ultrasound as well, the actual size of the whole gland, he said it was wrapping around to the back of my esophagus and with all this had been removed along time ago. I have had multiple biopsies and ultrasounds in the past, I’m hoping that this new doc will be able to get the copies from the hospital clinic I used to go to. Surely the doctors are good as they were all connected with centennial in Nashville Tennessee, I assume I can add this info. I’m really concerned about this and have been for years, over several of my medical conditions, especially with having this drastic recommendation with one visit. The size and potential issues from that and potential and possible current malignancy. I’m not sure o f everything the removal of my thyroid but I’m sure it would effect quite possibly a lot. I’m normally a person with my cup running at least over half full and I do try to look at the brighter side. I could start another concern of mine but it doesn’t fit too well in this subject hahaha, breast nodules, multiple! I’ve had lumpectomies twice in 1995 and 1999 and my report is lost somewhere, would love to have my hands on that cause back in those days if I remember right I had “precancerous” explanations of the results. Maybe I’m just probe to nodules, over growth of cells or tissues??? Pituitary adenoma. I will get all my labs posted though. Thanks again
I can imagine that does play on your mind quite a bit. Seems crazy that they lost the report!
I hope you get somewhere the next time you see someone about this. It would be worth asking if your FT3 and FT4 levels were raised at the time they put you on the tapazole, just to see what made them start that treatment.
hi Jazzw
It’s been a long time and I’ve been rereading these due to my thyroid issues and your question about the initial start of tapazole was solely based on a low “TSH”, that answer I do remember and I was placed on Tapazole back in 2011 I believe and I wonder why my T4 and T3 was not drawn but this is correct. I’ve thought for years my thyroid issue was connected with my pituitary adenoma and also my grandmother that had all issues was diagnosed on the death report with multiple endocrine hormonal insufficiency so that was in 1948, I’m not sure if it’s the same as “MENS” or related and also since I haven’t a fever in “years” I’m jumping out here, I’ve also researched the pituitary hypothalamus axis syndrome, oh my, anyway, something has caused and continues to create all this systemic stress and sickness within me and abnormal labs that don’t seem to follow a textbook, matter of fact, not much of my health issues follow a textbook and the problems that have been found and treated were done by doctors who can think out of the box per se. Back to the decision tree about the thyroidectomy, having an updated ultrasound soon then appointment with ENT June 4. Thanks, hope you’re doing well too
Bebe
How are you actually feeling?
Hi Batty1, I didn’t mean to avoid responding to your question and I do sincerely apologize! I thought I had answered this somewhere else but I’m so scatterbrained at times and I actually didn’t do I am very sorry. As far as how I’m feeling, I had a super bad infection in my spine in 2008 which required several surgeries as well as long term antibiotics treatment. I was o poop n IV vancomycin for about 4+ months, and then my other IV’s were switched to oral which were Levoquin 750 daily and Rifampin 600 mg daily along with other RX. Anyway, this long bout of craziness really tore me down needless to say, however, once it was all said and done systematically I honestly felt really really great with the exception of mobility and pain etc! Then about 2011-12 I had a really hard time dealing with everything and I was a nervous Nelly wreck, that’s when the thyroid issue was diagnosed and I was placed on tapazole daily and blah, terrible RX, took that for 3+ years and finally was weaned off of it, several ultrasounds and biopsies were done and just monitoring the thyroid, I would have periods of severe anxiety, palpitations, crazy erratic energy and exhaustion and my body couldn’t function as a normal person due to my disabilities so that made things worse, docs diagnosed me with fibromyalgia, crazy brain fog, nausea, stomach bloating, constipation, not too much diarrhea, lots of extremity nerve issues, head spinning, of coal this depression and anxiety, felt like a knot on a log, couldn’t focus or stay concentrated, couldn’t finish anything, lost interest in everything, and sweated like sweat hog, didn’t like going anywhere cause sweat would just roll off me and it very noticeable and cooking for anyone, nope, I wouwant to eat something someone cooked with their sweat in it. Dry eyes, my jaw teeth! Oh my my, all the money I’ve spent on dental work hahahaha, just to have my jaw teeth removed, I have a mouth that is not nice to look at, my front teeth strong! I have no clue what was going on with my bones in my gums and dentist and docs don’t either! Ears constant ringing, now my hearing is going bad! I have a nice tan lol and don’t sunbathe. Sleeping is not always going to happen at night as at times I may be like a cat and take those catnaps throughout my day and still I’m not rested, my skin used to be beautiful but not so much now. My toenail are awful and all nails hard and brittle, now I’ve noticed I’m have the wonderful glucose issues, mainly the drops in them. I can ask you a question and when you start to answer me my mind has already changed direction on something else. Memory is not so good, numbers aren’t either. Ask me to join you for an outing and I’m sure I will not go. I have a fear of crowds , I don’t like going to the store, I have in the past left grocery buggies in the aisle and left the store, I need my 6 ft of space bubble. All in a nutshell I could go on and on but the person you’re reading about prior to 2009 was not me. Hope this kinda helps you understand how I’m feeling. Thank you for caring. Bebe
I was able to login to Labcorp and they do have labs from back 10+ years ago which is amazing but this lab was drawn on 07/20/21 and I’ve copied and am pasting the results and range. Any info or suggestions please respond, thank you.
7/20/21
Thyroid Stim Immunoglobulin
Current Result:
<0.10
TgAb+Thyroglobulin,IMA or LCMS
Thyroglobulin Antibody
Current Result:
<1.0
Thyroglobulin by IMA
Current Result:
Flag:
44.5
High
1.5
ng/mL
Comment:
According to the National Academy of Clinical
AA
& patient.labcorp.com
38.5
The ranges aren’t included but it does indicate if low or positive.
I can see the Thyroglobulin in high. Not antibodies which where tested.
Thyroglobulin is associated with thyroid autoimmune & can be also be a cancer marker but your TSI & TGab are in negative range - these are hyper graves antibodies.
You could see if TPO & TG antibodies were ever tested.
I think your TSH is low because of your pituitary issues, not to do with autoimmune fluctuations.
Have your FT4 & FT3 ever been over range? EG when you had uptake scan where it showed increased uptake, your thyroid level must have been over range. No hot or cold spots on that scan, so that’s a good sign.
Your last function showed low / under range FT4 & FT3. I think your next step should be verifying if this is a ongoing result & if it is - treating with replacement with an endo who understands with central / secondary hypothyroidism causes low TSH & low levels.
Seeking old results might help order your history & understanding, which will help you long term, but your priority to help symptoms now will be treating the low thyroid.
Thank you and from what I’ve noticed on my lab results you’ve tight on top of it. I know the current labs would help so much and I’m not good organizing what I need to post so I apologize. This used to be a pet peeve of mine, no more, The only time my TSH was anywhere near to mid range or high was when tapazole was on board, I could follow that. I do have a mutation allele rs2235544 (A;A) which places me at higher risk for decrease thyroid conversion T4-T3. I also have mutated gs 192 and gs193 MTHFR, Combo which affects folate metabolism. Also mutated rs180223 (G;T) places me at higher risk autoimmune Thyroid disease. Back to the folic acid the rs1801133 (C;T), and rs1801131 (C;C). Anyway this may not have anything at all to do with any of this but thought I’d share it. Yo answer your question about T3 and T4 being low range normally the answer is yes, I never paid attention to this before until maybe a few months ago and I mentioned it to my docs cause it did dawn on me that with hyperthyroidism TSH decreases and t3-t4 increases however my lab results were all going the same direction lower. I did leave a message with my endocrinologist today to discuss postponement of the thyroidectomy at this time as I have so many questions, hopefully he’ll monitor by rescanning and lab draws. The one lab I posted that was flagged high , thyroglobulin by IMA range of 1.5-38.5 and my value was 44.5 concerns me due to the wording of cancer used in the literature however I haven’t read much yet and I need to discuss with endocrinologist, any information you have or knowledge would be awesome, believe me, I’ve heard and been through it all, I like straightforward, you won’t have any problems with anything you know cause that’s why I’m here, I don’t know much about the thyroid and lab results. Thank you very much! Bebe
I’ve not heard mutation allele but when you mentioned mutation I should have told you that DI01 & DI02 & MTHFR are often mentioned on this forum.
I googled the codes & they refer to same genes.
Have you arranged this testing? As what strikes me is if doctors have been this thorough, why haven’t you been treated properly?
Start new post asking for advice on gene mutations. Others with same experience can help explain.
doctors didn’t run these, my sister is very into DNA and also then she asked me to upload my raw data to a medical research company which I believe is highly respected in Europe but not so much here in USA, the mutations I had I found interesting because all I did was upload raw dna data and they in turn sent me hood genes, bad genes and and genes, very snps, very complex and complicated but interesting but not docs over here were not involved in this although I have mentioned it and it’s as if they change the subject…quickly. Thanks
PurpleNails, I’m so sorry, I should proofread and be more respectful with my typos, not hood but good*, snps is correct, google it and you’ll get results, thanks again, Bebe
Honestly, the only reason I grasped at straws is because I have not gotten any decent answers from docs nor have I gotten any positive treatment for my symptoms and so I’ve just basically drove myself crazy, In A nutshell. To me it has something to do with endocrine system, I used to be athletic, busy from morning till evening, very creative, social, thinker, go getter in a positive manner, makeup hair done daily, shower sometimes twice daily, so many more things to list but now I’m totally exhausted and why? Thought process, everything is gone and it’s not you don’t use it you lose it, I can’t get 1 and 1 to equal 3, yes 3! Thanks
I guess I’m confused as to why the endo would’ve ran the thyroglobulin by IMA lab in the first place, from reading the literature I’m not grasping the rationale. Maybe you would be able to help me understand why because it’s high, over the range 1.5-38.5 and I’m reading cancer issues and that’s never been mentioned to me. I’m probably just overthinking it! Thanks, Bebe.
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