I posted yesterday about arm & leg tingling & wondering if this was due to hypothyroidism?
I have just found some blood results from August 2017 & they look to be ok:
FT3 4.2 pmol/l (3.2-6.8)
FT4 16.3 pmol/L (12-22)
TSH 3.81 mu /L (0.27-4.2)
My GP thought at the time that I was slightly over replaced.
Most recently and around time tingling was starting. April 2018
TSH 3.1 (0.27-4.2)
May 2018
Adjusted calcium 2.44 mmol/L (2.2-2.6)
Serum folate 9.8 ug/L (4.6-18.7)
Serum B12 867 ng/L (180-700)
I went back to GP today as tingling much worse & in legs as well as arms now.
I will post results when I get them but GO said my tingling symptoms are not likely to be due to under replacement as I have lost weight & TSH of 3.1 is fine.
My dose of levo thyroxine is 75mcg.
Any further thoughts or ideas?
Thank you v much
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Polly91
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You have been given 75 mcg levothyroxin from at least 6 weeks before your full thyroid tests of Aug 2017 and April 2018 TSH result? Both look undermedicated ie need 25 mcg extra (if not more 6 weeks later, after blood test results). Your TSH result should be 1 or under. Have you had Vit D and ferritin tested- they too have to be in upper optimum range. I have had years of 'tingling' in legs, arms, hands, plus pain/fatigue, and went down lots of routes to try to get rid of it (from stopping statins, NHS physiotherapy/ acupuncture...and diagnosis of fibromyalgia). But raising levothyroxin (and adding T3) has got rid of most of tingling.
Yes Judith I have been on 75mcg thyroxine since November 2016.
Prior to this I was on 125 mcg for years and my TSH was :
July 2015-July 2016 TSH ranged from 0.1 to 0.4
September 2016 TSH 0.25 & T4 16.3 & this was when palpitations and fast heart rate & raised blood pressure happened.
Thyroxine was reduced to 100mcg but symptoms did not improve and in November 2016 thyroxine reduced to 75mcg.
Heart rate symptoms improved and bp etc went back to normal.
I remained on 75mcg & dabbled in trying 100mcg at w/e and 75mcg during week but felt some ectopic beats -March 2017 TSH 1.5
Reverted to 75mcg daily thyroxine in April 2017
august 2017 TSH 3.81 FT3 4.2 FT4 16.3
November 2017 TSH 3.7and T4 19.8
April 2018 TSH 3.13 and T4 18.3
I will get vitamin D levels this week
My GP was concerned I was "over replaced" when he saw the FT3 & FT4 in Aug17 so I remained on 75mcg and the tingling started in my hands about Feb/March 2018 & has spread & got much worse. I've been referred to a neurologist but I wonder if it's thyroxine that is the issue. GP says probably not.
I am glad you're tingling & pain has improved. I am struggling with mine as I can't sleep etc.
Your message was v helpful. Thank you for any further thoughts.
Oh, so was on 125 mcg for years before this, then had what you ( or doctor) thought were hyper symptoms of high bp, heart rate etc, but your TSH levels were good ie under 1 then. Did anything change summer 2016 eg stress,illness, diet, different brand of levothyroxin or change time of day taking T4? These heart related problems can also happen when undermedicated. Do you know if you have Hashimoto's autoimmune antibodies- associated poor gut absorption can affect take up of levothyroxin, any nutrients in food or supplements - leading to under medication even if apparently taking the same dose as before?
Yes Judith the summer of 2016 was a stressful time as I had a bad tooth abscess in April 2016 ( 3 courses of antibiotics followed by tooth extraction) & then a gastro virus caught on a plane I think (vomiting & extreme fatigue for about 8 weeks ). So I was quite ill April-July 2016. In Nov 2015 my 13 year old son was diagnosed with a tumour - I think the abscess was as a result of teeth grinding at night ( a temporary filling).
I was feeling much better by Sep 2016 which was around the time the hyper symptoms began hence the lowering of my thyroxine from 125 to 100mcg v briefly & then to 75mcg which is what it's remained at.
During that summer I started taking magnesium, vitamin C & a probiotic. I also has acupuncture. I thought I probably had adrenal fatigue.
Diet has remained fairly constant throughout.
I did not know under replacement of thyroxine can cause high heart rate & bp & palpitations? Both GP and I thought i must be over replaced.
What do you think has been going on & do you still think my tingling etc this year is thyroid related?
Thank you for all your thoughts and time. Are you are health care professional ? You sound like you may well be. 😀
Reason I asked is I had a bad time in Intensive Care following a routine blocked bile duct procedure that went wrong, and ended up with sepsis, septic shock, acute pancreatitis (and insulin dependent diabetes) : I had lots of antibiotics etc. In the following months I lost about 21 kg without trying, but with the same diet and activity a year later half the weight had returned. My hypothyroidism was no longer well medicated after 12 years, I became diagnosed with fibromyalgia. As I said most of my tingling has gone now with more thyroid meds. Anyway I believe that my health upheaval, perhaps like yours in summer 2016, caused these changes. I had wondered whether the antibiotics had had a temporary good affect on my gut health. No not a health professional, just from a family of them, and always been interested. Odd things bodies, especially when they go wrong!
So sorry to hear all this Judith. Your message somehow went into my junk so only just seen this. You really did have a horrid time.
Did you mean that all those antibiotics had a good effect on your gut ? I thought they generally wipe out all the good bacteria ? I’m so glad must of your tingling has gone. How long did this take after increasing your thyroxine ? I’m living in hope.
Yes antibiotics can wipe out good stuff in gut, but can also reset if it had been a bad gut environment. I have no idea really why the weight loss, then it coming back with no change in diet etc... But after this incident my aches/pains increased and somehow in two year period went from TSH of 0.75 to 3.23! Tingling largely went after say 3 months.
Lots of parallels in our situation. My body definitely went through changes during 2016 which is when I had the stress, infections, antibiotics, virus infection & fatigue. It all changed my underactive thyroid symptoms & I in turn had my dose reduced. In hindsight I would have been better off not reducing my dose by 50mcg (due to fast heart rate & palpitations) & Instead i should have joined this group!!!
3 months is a long time but at least that gives me some hope x
You are undermedicated to have a TSH of 3.1 as the aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.
With your August 2017 results, not only is your TSH too high, but your FT4 is only 43% through the range, and FT3 is only 29% through it's range, both free Ts far too low for you to be well.
Have you had thyroid antibodies tested? If not then I would ask for Thyroid Peroxidase and Thyroglobulin antibodies to be tested.
Have you had ferritin, and Vit D tested? All need to be optimal and low ferritin brings it's own symptoms, and thyroid hormone can't work properly when ferritin is too low.
It is interesting that you and others on this forum think I'm under replaced when my FT4 & FT3 were 43 & 29% through the range back in Aug 2017. I remember the GP distinctly saying we should do nothing as I'm probably slightly over replaced???
GP agreed to do thyroid peroxidase. What does this mean? What sort of value am I likely to see based on my levels and history?
I forgot to ask about ferritin but GP said I'm not anaemic so he may not have done it.
Vitamin D is being tested.
I had no idea about the importance of Vit D & ferritin so this is good to know.
Is the recent weight loss 2-3 lb in 6 weeks confusing as it's not so normal to lose weight when under active ?
I have learned a lot from you all in the last 24 hours and I'm hoping and praying that the pain & tingling is due to low thyroxine levels.
It is interesting that you and others on this forum think I'm under replaced when my FT4 & FT3 were 43 & 29% through the range back in Aug 2017. I remember the GP distinctly saying we should do nothing as I'm probably slightly over replaced???
I really do despair at the ignorance of some doctors. How on earth can you be over replaced with your free thyroid hormones so low in range and when your TSH is close to the top of the range. You can only be over replaced when FT3 is over range. See thyroiduk.org/tuk/about_the... > Treatment Options
Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing Dionne at tukadmin@thyroiduk.org print it and highlight question 6 to show your doctor.
Thyroid Peroxidase (TPO) and Thyroglobulin (TG) are thyroid antibodies. If raised they confirm autoimmune thyroid disease aka Hashimoto's which is the most common cause of hypothyroidism. This is where the antibodies attack the thyroid and gradually destroy it. The antibodies fluctuate and this causes fluctuations in test results and symptoms and you can get hypo symptoms but also hyper-type symptoms. I'm wondering if you weight loss could be anything to do with this.
Wow this is pretty compelling and I did get a copy of that article from Dionne this morning as recommended yesterday.
My GP says I'm "very sensitive" because of the hyper symptoms I had in Oct 2016 so I suppose he's concerned if my TSH goes below I will have those heart symptoms again? Hence he thinks I'm on the "right dose for me".
So if I understand you -even if I'm under replaced with thyroxine (hence TSH around 3) I could get both hypo and hyper symptoms (if I have those antibodies which seems is most likely based on fact that 90% of patients do have autoimmune thyroid disease).
Is that what you are saying? I.e. I could be having some hyper symptoms causing weight loss and hypo symptoms causing tingling etc?
Is that likely?
I also wondered if weight loss is just as a result of feeling so tired & unwell from pain, tingling & sleepless nights. My appetite probably isn't as good as "normal" these days.
Yes, with Hashi's it's possible to have both hypo and hyper-type symptoms. So it's important to test antibodies. If TPO come back negative it's important to test TG, because you can be negative for TPO but positive for TG. Also, one negative result doesn't rule out Hashi's, you would need several negative results over a period of time. However, just one positive result confirms Hashi's so no need to ever test again.
Sounds like your GP is mathematically challenged. And low free T3 can cause palpitations and ectopic beats. A good T3 level is considered by cardiologists as indicative of whether someone will recover from heart problems or not. You need an increase.
Oh goodness I had no idea about low thyroid levels can actually cause ectopic beats. I wish I had known this. Why does my GP not know this about high heart rate, ectopic beats being more likely to be due to hypo than hyper??? I hope it’s not caused long term damage. Thank you for your reply.
Well, you certainly weren't over replaced with a TSH of 3.82 and FT3 of 4.2. If anything, you were undermedicated and needed an increase in levo. Same with teh latest results. Yo uneed an increase until TSH is under 1 and fre T4 and free t3 sre int eh top quarters of their ranges. Tingling is more likely to be low B12 and/or folate causing nerve damage, or low calcium. but yours look fine. TSH of 3.1 is NOT fine.
Ok so I will suggest he increase my dose of levothyroxine if the thyroid results come back similar to last tests.
Am I better off adding T3 or more T4?
What is the optimum calcium level for thyroid patients? Does anyone know?
Many people have suggested tingling can be caused by hypothyroid & I think I saw it on NHS website which is what got me thinking my tingling could be due to thyroid (especially when my MRI showed no nerve compression which is what my GP & Physio thought).
Currently you just look undermedicated rather than a bad converter, but I suspect that many people would do better on a combination of T4 and T3, but don't expect your doctor to agree.
Ok thank you. I will see what GP agrees to but I suspect he will suggest I go up to 100mcg for 8weeks & then test again. I will push for a test after 6weeks as that’s what most people here seem to suggest.
If my issues are down to “just “being under medicated how soon would I see/feel the benefits ? Does it always take at least 6 weeks?
Well, I'm 70 and my TSH has been suppressed for as long as I've been keeping a record (20 + years), I've been Hypo for 43 years. An endo once insisted I brought my TSH into range, it just scraped into range - 0.4(0.27-4.20), my FT4 plummeted to almost bottom of range, my FT3 went down to 2.8 in a range of 2.8-7.1 and I became a zombie, had to give up work and be looked after for 2 years. As far as I'm concerned I don't give a hoot about where they think TSH should be, if being in range means I'm bed bound (and with no-one to look after me) then I'd be better off dead.
No, why would it? It often is, but that's probably because a lot of people have untreated hypo and/or dodgy pituitary feedback mechanisms and doesn't mean that they are well. A lot of older people have arthritis, bad hearing, dementia or dodgy blood sugar, but that doesn't mean that everyone over a certain age *should* have those things or that people that do are well (it might be statistically normal, but that doesn't mean "good"). TSH level is very individual and pretty much meaningless once you're on meds anyway.
My GP & all the stuff inc the article recommended by Dr Toft suggest whichever levels make you feel well. To be honest up until a couple of months ago I felt well even though my TSH was 3.1. But maybe it was only a matter of time before I felt unwell?
Do you or anyone have any thoughts on “feeling well” & TSH ?
Right now I feel terrible but that’s only since April when the tingling etc started.
Everyone is different. There are small percentage of people who are well with higher TSH; you might be one of them. What really affects how you feel is free T4 and free T3 - TSH doesn't actually DO anything apart from stimulate the thyroid to produce more or less hormone IF the pituitary and hypothalamus are both working correctly and there no genetic defects.
Yes, your free T3 was way too low and you don't give a range for the free T4 of 18.3 or a free t3, so not possible to tell, but likely. If range is the same as last year free T4 is still only 63% of the range.
I too get the symptoms that you are describing (numbness or tingling in fingers and toes), Polly91, both when my thyroxine has been reduced and when I increase the amount of exercise I do. I too lost weight on a reduced dose, because it slowed down my metabolism so much that food just sat in my stomach. I didn't feel hungry. A layer a fat deposited on my stomach in the 3 weeks and 4 days that I stuck to the reduced dose. I'd lost weght, but could no longer fit into my close fitting dresses. My doctor said that I was "very sensitive" too, but actually, I'm very observant and notice when a change in medication is impacting on my well being. It sounds like you are very observant too!
My doctor reduced my thyroxine because the TSH was suppressed. She did not test for T4 or T3. Thanks to the person who originally posted the article about Dr Anthony Toft, I was able to take it in to show her and sheagreed that my medication should go back to the original level. My TSH was suppressed again last week, but now she is happy for it to be so, because she also measured T4 and this was in the normal range. She even asked how I felt. My reply was, "wonderful".
Why do I get symptoms like numbness in my little fingers and toes the night after an increased level of exercise, for example swimming an extra 0.5 km on Saturday and Sunday? I think it's because I've used up more T3 than usual and it takes my body time to replenish it, but this is only my theory. I don't stop exercising because of it, but when I was on the reduced dosage, after 3 weeks and 4 days, I couldn't walk up the stairs at work, so my normal 2 km swims weren't possible.
I hope you can find a doctor who listens to what you are saying and puts your dosage back up. You've had a lot of stressful events in the last few years, which could account for the palpitations and change in blood pressure. I hope your son is ok now.
Rmd27 your message is so encouraging to me as I was doing a lot of exercise earlier this year (January to April ) Just training to do 5k in 30mins so nothing excessive but faster pace than my usual 33mins. I was also doing yoga & body pump. All in all my exercise had increased from 2-3 times per week to most days. The only other changes this year have been the dabbling with HRT patches. So with my GP keeping my TSH around 3.1 all these factors may have made my T3 needs higher like you say? Since May I’ve done nothing at all as I feel so yucky & initially thought it was coming from poor posture & neck /back issues. My Physio advised against doing anything as could make symptoms worse. In fact I think she was right in that the tingling was coming on in my hands when I was running. I ignored it at first. But stopped everything in May. Hence the spine MRI which only showed wear & tear / I should be grateful but I couldn’t understand what else it could be? Neuro surgeon said it could be carpal tunnel- but in my legs you ? So when I found this wonderful group a few days ago I got some hope for the first time in 6 weeks.
Except I had waves of nausea & v bad diarrhoea (sorry too much info?) a few days ago. Related? Or viral ?? Drug induced? So I stopped taking naproxen as I had been on it for 2 weeks. It wasn’t helping a lot but better than nothing & when you can’t sleep you get desperate (at least I do! Now just taking paracetamol at night & ibuprofen.
I had lots of bloods done on Monday - but just wondering if I’ve done no exercise for 5-6 weeks perhaps my T3 won’t show as being low? I guess we shall see when the results come out. I have my GP the article by Dr Toft too ! Hope he reads it.
My son is doing well thanks.
Can I ask does the tingling go away - with or without changing dose? Think mine is a bit more extensive as it’s in my hands & arms & feet & lower legs. Does yours come & go? How long have you had it? I’m v happy to hear you are feeling “wonderful “. Great news.
Once my medication was increased, the symptoms disappeared after a few days. I would think your case is worse than mine because you were on 150 micrograms for years. Your body was used to this amount and is now on 75. No wonder you are having problems!
I've had medication changes on a number of occasions. Initially I was put on 50 micrograms in 2012 and immediately felt better, no more cold hands and tingling. I had noticed that before going on medication, my pulse would stay high all day (104,instead of 60-70s) after a morning swim. It must have been because the thyroid levels weren't optimum for me. Sadly, I made the mistake of going to see my GP after a swim and he decided that the medication level was too high due to the increased pulse and cut it to 25. That is the first time I learnt that dropping my level was the cause of seveve numbness in little fingers and toes. I also felt extremely cold. At the time I was 51 and menopausal, so went from feeling hot to freezing. I was put back on 50 micrograms after 4 days of hell.
I changed clinics because my first gp went off on ill health. The new clinic focused on the TSH, and mine wasn't in the optimum range. I felt fine, but that wasn't taken into account. I was put on 75, which initially caused palpitations, so I only took it once. The next try was fine, but after 6 weeks, TSH was still not in the optimum range. I still felt fine, but it was increased to 100. Of course, it still wasn't in the optimum range after 6 weeksm so next new GP decided that I should take 125 micrograms twice a week, and 100 micrograms for the rest. Well, that didn't work for me! I demanded to see an endocrinologist, who was angry that the GPs weren't looking at the T4 and T3 levels and said that it didn't matter that my TSH was slightly raised because the other levels were fine. He said 100 micograms would be fine for life.
All went well until TSH was depressed, and the result of that I mentioned in the previous post. I will never change my dosage again, unless I feel unwell.
You sound very active, like me. I also walk but cannot run due to arthritis in the knee. I swim and go to the gym. You can exercise if you are properly medicated. As for the blood levels, you need to find what is optimum for your body. We're all different. Don't know about the diarrhoea, don't think that's thyroxine rekated.
Thank you rmd27 I’ve learned a lot from you (& many others) in the last 4 days since joining this group. I will ask my GP to test T4 & T3 (? As well as TSH?) every 4 months (if he will agree) as that will be the best indicator of appropriate thyroid levels and hopefully these tests coupled with other things going on in the body eg stress, exercise , vitamin D etc should mean I get the right dose.
I agree the diarrhoea & nausea was probably a virus (or effects of naproxen ).
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