For about two months have had mildly irritating nerve issues in my hands and a little but on the tops on my arms. My feet occasionally have a little numbness and even in my cheeks I sometimes feel a little wonky. I've been diagnosed with Hashimoto's for about a year and a half. I've been undermedicated with almost no help from endocrinologists the entire time and my symptoms have never once resolved, my antibodies are always high (in the 200s). Now I've got this issue to contend with...could it be from being hypo or should I fork out the money to see a neurologist? I'm over here scared to death of having M.S. Latest values from being on 75 mcg Synthroid:
TSH 3.790 (0.45 -4.5 iIU/ML)
Free T3 3.0 pg/ML (2.0-4.4 range)
Rt3 32.3 ng/dL (9.2-24.1 range)
Free t4 1.62 ng/dL (.82-1.77)
Thyroglobulin antibody 1.0 IU/mL (0.0-0.9 range)
TPO Ab 258 (0-34 range)
Written by
crw2ddd
To view profiles and participate in discussions please or .
Could be b12 as anything under 550 can cause permanent neurological damage... Mine was 320 and even though now 800-1000 with high supplements I still have numbness in finger tips. Hmmm your ferritin is low too and your vitamin d looks low though not used to that range so don't know what its measured in?
So 101.5 in nmol not too bad but best about 125nmol or 50 ngml. May help to supplement d with k2mk7
A couple of things that may help slightly-
Lack of thyroid medication can give you carpal tunnel syndrome; ask your doc for a referral to a testing place. It is possible though that this condition could no longer be eligible for treatment.
Aching feet can result from shoes that are too narrow. I have dumped all my old shoes after having serious problems last year. Now buy them from widerfitshoes.
I have little understanding of blood test results but suggest that you are seriously undermedicated. Suggest also you consider getting some NDT.
Thank you for your response. I feel that I have been under medicated since my diagnosis in June 2017 I have been pondering if this latest symptom could be from long term hypothyroidism. My mom and her sister both have Hashi and they take 2 grains Armour and are doing well. My endo is hesitant because she thinks I am sensitive to T3 because i had some hyper symptoms after adding 5 mcg of cytomel to my regime a few months ago.
So, did your endo do some labs to see what the 5 mcg cytomel did to your levels? Or was she just jumping on the opportunity to stop the T3 because she didn't feel comfortable prescribing it? It's just amazing how many endos 'think' something, but never do the tests to back it up!
It often happens that people with Hashi's have both hypo and hyper symptoms - can happen to people without Hashi's, too. It does not mean you're 'sensitive' to T3, it's just the way some people's bodies handle T3. It isn't equally divided between all the cells in your body - although they all need it - it often happens that some cells get too much - causing hyper symptoms - whilst other cells don't get enough, or none at all, causing hypo symptoms. This is just basic biology. Plus, on top of that, so many symptoms can be of both hypo and hyper, so difficult to say what they're due to without doing bloods. So, that excuse of hers really doesn't wash. Or else, she doesn't know that much about thyroid.
Have you had your calcium tested? There is a link between abnormal calcium levels and tingling hands, etc.
So, you know you have Hashi's, and you know you're under-medicated. Why doesn't she increase your levo? But, there's something more than that. Your rT3 result is too high. Now, the problem with the rT3 test is that it tells you if there's a problem, but doesn't tell you what it is. It could be so many things. It could be high FT4, but your FT4 doesn't look high enough to cause an rT3 that high. Or, it could be your low ferritin. What does your endo say about that? Or, it could be high cortisol - have you had that tested? Isn't your endo concerned about the high rT3?
Yes, when I was taking 50 mcg of Synthroid with 5 mch of Cytomel my TSH was .0015 and my T4 was above range, and my t3 was fine. I had a slightly increased heart rate, itchy skin, and headaches. I felt good after lowering my dose, but then I felt terrible within a month's time.
What do you call 'fine'? That's an opinion, we always prefer to have the numbers.
So, if your FT4 was above range, you were taking too much levo. By how much did you reduce it? If you reduced it by too much, once the reduction kicked in - which would take at least a week, with increasing symptoms - you would feel terrible.
For some reason I don't have that t3 lab value. I only have the TSH at .015 (.358-3.740 mcIU/mL and the free T4 2.18 (.82-1.70 ng/dL) I believe the T3 was in the middle of the range.
Well, middle of the range is not really fine. Most hypos need it higher than that. So, it does sound as if you have a conversion problem, and need that T3.
So, I got off the t3 medication completely and just took 50 mcg Synthroid 5 days per week. In 8 weeks time, my TSH was 14.030 (.358-3.740 mcIU/mL) and my Free t4 was 1.14 (.82-1.70 ng/dL) I dont have the free t3 value.
I had my calcium checked in the past, but I didnt have this symptom then. In June 2018 it was 9.1 (8.6-10 mg/dL). My AM cortisol has been high in the past, in January 2018 it was 25.6 (6.0-18.4 mcg/dL) but by May 2018 it went down into range at 17.4 (6.0-18.4 mcg/dL). I haven't had it checked since then. My endo thinks that the Rt3 could just be from the Synthroid OR it's from the fact that she think I have a variant of Hashimoto's called Hashimoto's Toxicosis, where the gland randomly spits out hormone and the Rt3 is acting as a protector. I also read that Rt3 could be high simply from the inflammatory response of the disease. Nevertheless, it could be a reason why my cells are likely not getting the thyroid hormone that they require.
No, you don't just get high rT3 from Synthroid. That doesn't make any sense unless your are taking too much. You were taking too much, but in those labs above, your rT3 is extremely high, but your FT4 isn't high. So, it's got nothing to do with the Synthroid.
Hashitoxicosis is not a varient of Hashi's, it is a transient stage of Hashi's after a an immune system attack, when the dying cells dump their stock of hormone into the blood, causing FT4 and FT3 levels to rise sharply and the TSH to drop. But, there is no sign of hashitoxicosis in those labs above. Your FT4 is good and your rT3 is high. So, that's not the explanation, either.
Nevertheless, it could be a reason why my cells are likely not getting the thyroid hormone that they require.
No, the theory that rT3 blocks T3 receptors has been debunked. rT3 has its own receptors. Your cells aren't getting the thyroid hormone they need because you are under-medicated.
You should have your calcium retested.
Oh, and the gland doesn't 'randomly spit out thyroid hormone'. As I said above, it's the dying cells that dump their stock of hormone because the thyroid is under attack from the immune system. No spitting involved. I really don't think your endo knows anything about thyroid. Is she a diabetes specialist?
I didn't realize that Rt3 had its own receptors. That's new information to me. I feel like my endo doesn't fully understand the role of rt3 and even said that it didn't have any bearing on my treatment plan.
Give your references on that immediately about rT3 having it's own receptors.....and also about the so called debunking. Since you, greygoose are not a doctor, you must give some evidence from someone who does understand.
Well, since it's so nicely asked, I would suggest you read through diogenes posts. And, there's no 'must' about it. But, a little 'please' and 'thank you' would go a long way.
Not the whole story, I am sure, but without a doubt the simplistic suggestion that rT3 has only one activity, blocking a T3 receptor, and is otherwise inactive is at the very least deeply flawed and, quite likely, very misleading.
I am sure you have read many posts by diogenes - he is an Independent Research Analyst involved in Thyroid Research and a member of this forum. He is Dr John Midgley - so you will see his names on the Research Papers. If you go to the top of this page and click onto Members and then type in his username his many posts will appear.
This response contravenes one or more of the following Thyroid UK Guidelines:
7. All members should conduct themselves at all times with respect and honesty.
8. We want all members to be comfortable posting here. In order to ensure that any post or comment which causes alarm, harassment or distress to any person, whether or not intended by the poster, may be removed.
After these results came in she prescribed me 4 mcg of slow release t3 from a compounding pharmacy to take down the TSH. However, I took this medicine for three days and felt worse than ever. I had afternoon crashes, my energy was down and I had insomnia one night all night long. It did help me with my eyes - - which always feel gritty and irritated. t3 is the only thing that helps with that symptom. But, it seems that I can get the dosing right.
Hopefully someone can help advise about t3. I myself couldn't take it as it sends blood pressure sky high, as did Levo so I take NDT. I will say getting dose right takes time and very small increases and no switching up and down in short periods. In other words small increase or decrease and wait six weeks on that dose and test again. Hashimotos is going to cause fluctuations anyway. Is d result in nmol/L?
Yes. I feel hopeful that maybe one day I can find the right combination of drugs for me. As of right now, I just can't get it right. My mom and aunt take armour and do very well. They've been urging me to switch for sometime. The vitamin D is measured in ng/mL
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Thank you for your reply. Yes, I have Dr. Wentz. I've been gluten free for a year now. Seemed to reduce my anxiety quite a bit and reduce symptoms of IBS. I've eaten gluten a handful of times over the past year, but remained largely gluten free. I also avoid soy and not much dairy. I do not have celiacs, confirmed by blood test and endoscopy biopsy. I realize now that my vitamins are in range but not optimal for thyroid function.
Also, interestingly, last year I was found to have H.Pylori, which can also bring the stomach acid down even further. I also have been pregnant twice in the past five years, and breastfed each kid for 10 months. So, I feel like those things have probably had long term vitamin depletions. I just ordered the Betain HCl with pepsin and some B Complex. I already take 1000 IU of B12, 200 mcg of Selenium, 30 mg Zinc, and Glutathione and Omegs 3s. Sometimes I take a probiotic but Im not consistent. I might also had magnesium
I agree with you over the celiac disease but some authorities do not do a more detailed analysis of food intolerances. I found I was not gluten intolerant but had multigrain egg and dairy intolerances. I can only eat oats as a grain. As you mention the gut can be affected preventing enzymes and catalysts for conversion of ferritin and iron levels.
As far as I know only gluten, egg and dairy are usual tests. The multi grain intolerance leads to so much histamine building up in the system, with other food intolerances, inflammation can occur. I found cutting down on dairy has helped inflammation in sinuses and ears, and the gut but still take a daily prescription of antihistamine which
keeps the symptoms under control. Ascrw has removed gluten may be she needs to have celiac tests, for dairy and egg. I had to go privately through NHS pharmacist to find out what was upsetting my gut for wheat, maize, rye, barley, rice, which are added to so many foods. As I have had tingling in feet and hands due to type 2 diabetes, peripheral neuropathy, it has resolved keeping my blood sugar levels done. I was told by a physician that thyroid problems might lead to diabetes later on and this proved true in my case.
Gastroenterologist who did my Endoscopy told me the coeliac blood test only picks up about 50% of coeliac cases, and obviously misses all "non coeliac gluten sensitivity" cases
I just wish GP's and endocrinologists would suggest autoimmune patients consider trying illumination diets
You are right - unfortunately in my area referral times are over 18months for this assessment. The food intolerance test through Alphega pharmacy chain
throughout Uk only took a few minutes for a smart finger prick blood test, by a German company has improved my health so much. Within a few days noticed the difference after removing every potential allergen without reintroducing them. The pharmacist is trained, to administer and interpret the test and the pharmacies are all linked to the NHS. Your help has been appreciated.
So was that b12 result while you were already taking 1000iu b12? I would increase to 5000 for a month at least to try to increase. If you do take a b complex make sure it has methyl folate not folic acid. Oh and always stop it for 5 days before blood test as many labs use biotin in tests and you will get false results.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Yes I see a high rt3 but I don't know the cause except maybe the low ferritin. Another theory is that I feel chronically stressed from being undermedicated and dealing with the muscle aches, pain, fatique etc that my cortisol is causing the high rt3.
Hi crw, on top of what others have said you should also test your adrenal glands. When your thyroid hormone is too low and metabolism needed to run your body as in burning calories keeping your heart and brain functioning the adrenal glands have to step up. They use adrenaline and epinephrine to keep you intact. Plus, all those other functions like cell turnover and detoxing. Why doctors take this so lightly is beyond me. When the adrenals do this you are in a fight or flight state also known as stress or sympathetic state.
There is a cortisol test using saliva which is a four point test which checks active cortisol. The blood test isn't as helpful.
I usually use a post of Healing the Thyroid and Adrenal by John Bergman but this is him in an interview about the same. youtube.com/watch?v=0Teet2x...
Dr. Bergman has more understanding of the body than all the conventional doctors put together. Even so he is not entirely against vaccinations but points out that adjutants like mercury and aluminum are harmful especially in the high amounts to small children. No one will argue that point but you have to decide if it's worth it.
You understand that you are born with no immune system and must develop your microbiome from your environment. Ask your doctor what he understands about the microbiome.
I bought my own saliva test kit as docs only do one, and results were I had high cortisol from 9am to 7pm, I was a mess jumping out of planes and crying for no reason and so angry 😩 just horrible, but I researched how to fix it and was back to normal within months 😀
I did actually do 2 parachute jumps 😃 as I needed the Adrenalin kick as my normal day was full of adrenaline, yes I was in fight or flight all the time in the day but was able to sleep
LOL, sorry about that. You have to admit it's not a very common statement and with technology often changing words you never know if you can trust what you read.
The interview with John Bergman is a good one. There is also a summit Reset your Thyroid on at the moment if you are interested. thyroidresetsummit.com/bpwrhg/
Hi! Your TSH is a little high in the range, but your free t3/T4 look good. I get the same tingling you describe when my TSH goes above 2.0. I feel best slightly under 1.0. If your doctor will agree, you could try an increase to 88 mcg. to see if that helps.
Sorry to hear about your tingly hands and arms. I do not know if it is of any help but I also have these symptoms for years. I have hypothyroidism (not sure if it is Hashi's) for 26 years now and since about 4 years my hands started to tingle, sometimes up to my elbows, sometimes also in my upper arms. In 2016 I was diagnosed with carpal tunnel syndrome (CTS) in both wrists. My symptoms are gone when I am busy working with my hands, but always get worse when I am in rest (sitting, sleeping). Because I also feel undermedicated I never dared to have a CTS operation because that would just be symptom relieve. After searching a lot, I now believe that it has to do with fluid retention due to, amongst others, undermedicated hypothyroidism. The things that I am trying to correct are: not taking vitamine B6 (especially not the pyrodoxine form because it may in some people cause nerve irritation/damage and the liver needs to convert it to active B6), trying to lower my estrogen dominance which cause comparable symptoms as hypothyroidism, drinking lots of water that helps normalize fluid retention, and what helped me a lot was taking a pretty high dose of magnesium supplements (total about 600 mg) in the form of bisglycinate in the evening and malate and glycerophosphate around noon. It is not over yet, but had improved a lot. I also believe that gut function has a lot to do with it, because the intestines need the correct fluid dose. I hope you find your way in this big search, which to me sometimes looks like a vicious circle. But with all the info and support of the great people here on the forum I'm sure you also will get improvements! Take care and I wish you good luck!
Good to know some other people have had this tingly problem and I'm not the only one Thank you for your response - I think I might give the magnesium a try. Do b complex vitamins typically include the b6 or no? I also guess I shouldn't take biotin since it interferes with the thyroid tests.
Yes, B-complex, and also multivitamins in general, do contain B6. I have not found any of those without B6 so far. I am not sure if biotin does cause any tingling. I do know that biotin influences the thyroid lab results and should NOT be taken for 5 days prior to blood draw.
You sound like me,mine is up to my elbow mostly but occasionally above, I had a test done for carpal tunnel it wasn’t that, I can only think it’s oedema that I have in my arms that must god constricting it, I wake up like this and if I use my arm it goes, I have petibial Myxedema in my legs but also in thighs and arms, I eat a lot of salt, I decided to stop eating it thinking it was this causing my odema, no change, my stomach swelled like an Ethiopian and all bowel movements stopped, I couldn’t eat I felt so ill for 4 days, I now know my salt addiction is attracting water in my bowels as everything with thyroid is slow 😕
Thanks for sharing your similar problems. I also tried to lower salt without success. I was tested for TOS (thoracic outlet syndrome) but that was not the case, luckily. 'Only' the CTS. During the TOS test I have been told that my arteries from my shoulders to my hands are normal but the veins are rather thin, which means that blood goes down easily, but up more difficultly. I guess this contributes to the tingling feelings. When I work too much with my arms/hands I afterwards get swollen fingers and underarms. And the older I get, the longer it takes before this dissolves again. It makes me feel restricted in many things in life. What exactly do you mean with your salt addiction attracting water in your bowel? Do you mean you have better stool when eating more salt? Do you get any therapy for your myxedema?
Unfortunately not, it seems to be just my constitution. They look healthy but just are thin. Of course I am not happy with it, but I am glad I know this now, so I have a better understanding why I need to limit working with my hands. I tried gingko biloba what would help blood circulation but I do not feel any improvement.
Interesting. I noticed this last night that it was much worse while laying down. I woke in the night and couldn't go back to sleep because it was very distracting.
Hi you should join a B12 deficiency site. Those symptoms could be low B12. If you are having neurological symptoms as stated, you will probably not benefit from oral B12. For b12 testing to be accurate you need to be off of any B12 supplements for 4 months I believe it is. Here is a link to a B12 group. They are very informative.
I had this, was referred to a neurologist for an MRI and they found I cervical radiculopathy. This happened when you have arthritis in your neck vertebrae that pinch the nerve, so you get numbness and tingling in your arm or other places, depending which nerves are pinched. Ask for a neurology referral x
Wow. Okay. I don't particularly have any neck pain, not that I necessarily would I suppose. I think I'm going to continue to adjust my meds to get into the optimal range and then if this continues I'll go to neurology.
Just fyi I had no neck pain but I had tingling and numbness in hands and arms and pain in one shoulder - in my case an MRI found arthritis that was compromising a cerviacal nerve. So its possible its not thyroid related. The other potential cause is low calcium I was tested for that too
This sounds so familiar to me, I had fused discs in my neck and had Chiropracter to loosen them also shoulder pains which led to lots of head aches, I now have bulging discs and my neck doesn’t have a curve it’s straight 😩
Sounds like you may have occipital neuralgia, watch over extending qith the fused disks, that will impinge on nerves in areas not fused. Husband had it, therapist really screwed him up!
I didn't have any pain in my neck either, but a neurologist ordered an MRI and found that to be the cause of the numbness and tingling. It's apparently one of the most common things they see in neurology. Don't rule it out.
I agree with Saraoxford. You should have your neck checked. Also, getting the immune response back in balance is crucial. Your body won't stop at destroying the thyroid.
Yes I've been trying to do this, but my endocrinologist said that the antibodies are provoked by being chronically undermedicated. So our first step right now is trying to get my thyroid levels optimal and also taking the Omega 3s and glutathione selenium and zinc to reduce Inflammation. Im also gluten free.
I am hypo and have had a lot of the tingly skin sensations. Mine became quite severe for several months and eventually spread to my entire body. It became an almost electrified feeling and hot sensation. Like you, I was very scared and it was insanely uncomfortable. I am not as technical as everyone here, and my contributions are based on my experience, which I hope can help you. My bloods showed high Parathyroid hormone, which can be implicated in conjunction with calcium deficiency and hence tingles. In my case, my doc advised me to experiment and just to add calcium and see what happens, and then retest after 4 weeks - which I've just tested the other day but not gotten the results back yet. However, in the meantime, I am also on T3 SR and have been slowly increasing my dose over the past several months. I tend to be VERY sensitive when I start on any hormone and have had strong reactions at first - i.e. huge emotional swings, complete exhaustion, overwhelm, etc (I had a full hysterectomy about 16 months ago and have also been adding / balance HRT prior to the T3). With the T3, I started on 10mcg SR and like you, when I first tried it, I was floored and had a horrible reaction. I was virtually frozen with an inability to cope with anything, and had to lay down from 8am-3pm just to get through it. I tried the next day with a similar result and got scared off. I eventually decided to try again after a lot of reading and started at 5 mcg. I felt ok for the first few days, but then felt horrible for a couple of weeks, and then things balanced out. I increased to 10mcg and hit what is referred to as "the sweet spot" when all of a sudden the world felt ok and safe (it is one of the first times in my life that I have ever felt that), and many of my symptoms went away or decreased, including the tingly sensations. Then after 3 days, the symptoms started returning. I increased to 15 mcg with similar results and then I became overzealous and increased my doses too quickly for me (about every 5 days) and then started with hyper symptoms and increased blood pressure (at 25mcg), so backed off to 20mcg and then back to 15mcg, where I had last been comfortable. I felt really bad over that weekend, but then things settled at 15mcg. Long story short, many of my symptoms went away or significantly decreased when I got up to 15mcg. I now increase at 4-6 weeks. I am now at 20mcg. But I find the same pattern happens for me with each increase - a few days of feeling fine, and then about a week and a half of feeling terrible and then things balance out over the next 2 weeks. At about the 4 week mark, my symptoms start to creep back in, so I see how far I can last and then increase. My understanding of this is that my body gobbles up all of the T3 at first and feels good. Then it wants more and I feel like crap. Then it balances out and works out if it needs more or not. I still have a way to go, as I still have heart palps and I just had a very stressful couple of weeks at work and then got sick and I went way backwards for a week with hypo symptoms, but the 4-6 week increase time frame for the T3 SR seems to be working for me. I share this as you may be similar to me. I got lots of comfort from this site reading about other people's experiences of what they experience when they increase. Some people here say to increase every 5 days, which works for them, but that didn't work for me. The 4-6 weeks seems to be a good gauge, but I have had to ride out feeling worse in the process, which others also talk about, so I just tell myself that and give it 2 weeks and see what happens and it usually starts balancing. I also had high rT3 which I've read can cause similar symptoms to hypo and I've read that it can take about 8-12 weeks of using T3 to clear the rT3. I have only this past weekend had my rT3 tested again along with all of my other thyroid hormones, and I don't have my results yet so I can't give you numbers for if my rT3 is down or not. So I can't say exactly what diminished my tingley sensations and some of my other symptoms (i.e. calcium, T3 or the clearing of the rT3), but I suspect it was the T3. My doctor also suggested she thinks I have CIRS, which is mostly caused by mould mycotoxins and she said one of the telltale symptoms is the tingle sensations, but we've not treated the CIRS yet and the tingles have been gone for over a month. I also have digestive issues, and have just finished a gut healing protocol, and take many supplements as well, so it can be tricky to isolate anything. I know we are all different with what works for each of us, but I think the T3 has been the most significant factor to me improving to date. I did get some bloodwork done about 4 weeks ago and my fT3 had increased from low to mid range, so there was some improvement. I am keen to see what my ratio is between fT3 and rT3 on these latest bloods. I am starting to research Paul Robinson's circadian method using direct T3 as I suspect my adrenals are still compromised and his theory makes sense to me, but I'm not ready to try it yet. I'm best to go slowly. Unfortunately, this is a game of trial and error, and the error is so uncomfortable. I seem to get new and different symptoms popping up each month. Some can be very scary. But I've noticed that they tend to shift and move eventually. I see a cranial osteopath regularly, who has also helped me and my body immensely. I have gotten so much great insight and information from this site. And I'm happy to report that I am definitely experiencing some improvement, so know that there is hope. You will get there. Listen to your body and your instincts. You are obviously very switched on. All the best.
Thank you for your response. I've been researching and reading about hashimotos for the better part of a year. Your story sounds very familiar. Especially the body gobbling up the t3 as soon as it recieves any. I feel a little better at first if I take some, but when it wears off, I feel even worse than if I hadn't taken any. I feel (and hope) that the tingles are just chronically desperate cells needing thyroid hormone. Yes, symptoms seems to cascade and recede all the time - sometimes within a single days time. Have you ever tried armour?
No - I’ve not tried any firm of NDT. It was suspected I wasn’t converting well so T 3 seemed the best choice for me. Also, the particular integrative doctor I’m seeing currently isn’t a fan of NDT and I’m happy to go down the T3 road anyway though. I actually think NDT has a lot of merit from what I read but haven’t tried it myself.
Yes - slow release. I’m only using the SR because it is what my doctor prescribed. Taking direct T3 I know can be tricky because it has to be taken on an empty stomach and multiple times a day so can be tricky m. I thought I would give the SR a real go and then switch if I felt I wasn’t getting anywhere. Still in the trial stage.
crw2ddd, I feel so sad for everything you've been though. I've been through the same thing, and was taking 75 mcg liothyronine last in the third quarter of last year. From my experience with the same symptoms, including a bad experience with adding T3 in a small amount, I would reduce your problem down to the rT3. It is alarmingly high. It is multiple alarm bells, klaxons, and flashing strobe lights. It is probably due to your genetics. There are multiple genetic polymorphisms that have been identified by researchers as causing increased rT3 production during deiodination of T4. I carry several of them, and the more T4 I took, the worse I felt -- all of those things you are describing. The endocrinologist could not understand what it was, because he wasn't taught about rT3 in school.
I verified this by borrowing Werner and Ingbar's Thyroid, a modern textbook that discusses hormone synthesis, transport proteins, the physiology of hormone binding, intracellular pathways of hormone metabolism, genomic action of hormone receptors.
According to page 127, in some tissues, circulating T3 in plasma enters the cells through plasma membrane transporters, while in other cells conversion happens intracellularly from T4 in plasma by a protein function, DIO2. The T3 produced by DIO2 enters the nucleus and binds to nuclear receptors. The receptors have been found primarily in cell nuclei but also in cell cytoplasm. The DIO1 gene works through transcription, rather than protein synthesis. DIO1 has been shown to influence thyroid hormone receptor activation.
Thyroid hormone receptors (alpha and beta) bind to DNA regulatory elements in genes that respond to thyroid hormones. Research has discovered temporal patterns of recruitment of these regulators and their cofactors, and the interactions may be only seconds in duration. And some target genes are negatively regulated through elements that repress gene expression by thyroid hormones.
Sadly, only passing reference is made to rT3, and one would need to visit a website of a biotechnology firm that develops tests for rT3 to get a non biased explanation of rT3:
"The majority of circulatory rT3 is synthesized by peripheral deiodination of thyroxine (T4). Both T3 and rT3 bind to thyroid hormone receptors, but in contrast to T3, rT3 has not been found yet to stimulate receptor metabolic activity; it blocks receptor sites from T3 activation. "
From my experience, I would suggest you see if your endocrinologist can reduce your T4 to 25 mcg and start you on T3 at 10 mcg. If you are overproducing rT3, as the blood test indicates, it is creating havoc with the ability of your cells to make use of the available. T3.
The good news is you likely do not have any other disorders at all. Every function of your body is dependent upon thyroid hormone availability to your cells. Currently you have hormone circulating but it's not reaching the cells.
Thank you for confirming what I have been wondering all along. I know the t3 is not reaching my cells - I don't need a lab test to tell me where I'm at - the hair in my shower and the ache in my bones tells me everything I need to know. AS I come to know this disease I feel it getting worse and now that I'm on the 75 Synthroid, up from 50 and no better, maybe worse. My mother has hashis she was diagnosed over ten years ago. Also put on Synthroid and immediately felt worse and was put on armour and does well. Her sister, my aunt, also had hashimotos and the exact same thing happened to her. She wound up on armour. Im at my wit's end. I've been sick my whole daughters life.
The ratio of T3 to T4 in NDT wasn't enough for me, so don't be discouraged if you turn out to need far more T3. The important thing is to have a doctor who will let you work out a beneficial treatment.
Slow Dragon's suggestion to get a quality B Complex is a good one. I've had the tingling you describe from a problem with absorbing the pyridoxine form of b6. The quality b supplements use p-5-p not pyridoxine and it makes all the difference, especially when taken in conjunction with Magnesium, which you need by the way, if you're taking either b12, or vitamin d. CTS can be relieved by the combination of p-5-p and Magnesium. Sorry, this link has ads, but it does explain the benefits pretty well, although I am happy using Mag Citrate rather than biglycinate.
I am a novice in this game. - Just diagnosed with Hashis following a hemithyroidectomy for suspected cancerous nodule - mercifully not malignant; but I am panicking just reading all the hassles you all have trying to get the treatment right as I am really keen to alleviate symptoms which have been debilitating me and getting worse for some months now.
Sometimes novices can see the wood for the trees and based on my limited research so far the thing that leaps out at me from all your results as meriting further investigation is the extraordinary high levels of RT3 which I thought means that you can't convert T4 properly anyway (however much you medicate yourself) . I also seem to recall seeing that this might somehow implicate the pituitary gland. In your shoes (and of course I am not so this may be way off) I would try to find an endocrinologist who was able to take a holistic view rather than one specialising in any one gland. Like in other areas of medicine too much specialisation can sometimes lead to blind spots or lack of coordination of treatment. Do these people exist and how does one find them?
You had to have half your thyroid out and now you have hashimotos? Or, do you mean now have hypothyroidism? In the US we have functional medicine, but it's almost never covered by medical insurance, so if you want to see someone to look at you holistically you have to pay out of pocket. I found a new doctor who is more open minded than my old doctor. She is kind enough to answer me when I send her scatter brained emails with thyroid related questions and inides supplements in her plans. So, there are doctors out there that will sometimes use integrative solutions. My old Endo wouldn't even check rt3. This new doctor thinks the rt3 is high due to the immune response - when cells are damaged they dump thryoid hormone into my blood stream irregularly. The rt3 keeps my levels from going to high. She's not worried about it. However, I'm not so sure this is exactly what's going down or not. Rt3 can have a lot of explanations.
For 4 years after complete Thyroidectomy, my hands were tingly and burned along with my feet. They were frequently swollen as were my joints. I suffered and was depressed. I took Doctors Synthroid T4(Thyroxine). I switched to NDT got the dose right and life is normal. I exercise and live like a normal young person. I am 70 and life is good. Haven't seen a GP for 3 years. Get regular blood tests. Life is good.I also have the belief that I should be healthy. It is up to me.
Someone else mentioned tingling with hypER. From my recent labs I'm not hyper, but once when I was over medicated and maybe in a flare up, my skin was prickly and hot. I just think thyroid symptoms can be almost anything from what people report. Such an individual disease.
Did you see my level was 413, posted above in the comments. I take 1000 iu daily of methylcobalamin from pure encapsulations but its not helping relieve any symptoms
Could be Sjögren’s Syndrome as I have this with Hashis and small fibre neuropathy everywhere.
“Many Sjögren’s patients with devastating neuropathies have delayed diagnoses, because the blood work does not show any evidence of abnormal antibodies. The work, at John Hopkins, shows that nearly 50 percent of Sjögren’s patients with neuropathies lack these antibodies. Using the expertise of the Rheumatology Core Laboratory, John Hopkins Sjögren’s Syndrome Center, are seeking to identify novel and previously unidentified antibodies, which will provide insight into relevant mechanisms, and suggest therapeutic opportunities.”
I also get that. Numbness can be terrible in hands, face and feet, I drop stuff all the time when I go numb. Once I had a free ride in an ambulance because all my left hand side was numb and work thought I was having a stroke! That bugger lasted 3 weeks and being able to speak or walk was intermittent. Scared the pants off me.
And you have hashimotos/hypothyroidism? It appears that the numbness/nerve discomfort is from a low amount of T3 or long term hypothyroidism. I had a full body nerve problem once and I want to the ER but it was a reaction to the antidepressant Paxil.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Thyroid test results 
Lab Results, taking Naturethroid-Comments Please
lab results 
