Hello, I hope you can help me. I've been on levothyroxine for 17 years and my dose was reduced about 18 months ago due to palpitations. I'm now on 75 mcg & my TSH is 3.2 and T4 within normal range. Over the last 5 months I've experienced worsening tingling, numbness & pain in my hands, arms & now even feet & legs. I've lost weight & have felt quite low since symptoms have worsened. Dr thought it was a compressed nerve but MRI did not show this. Now I'm worried as I cannot understand what is causing the symptoms which are gradually getting worse. Naproxen helps a bit.
In 2016 (2 years ago) I had adrenal fatigue following a stressful family situation & tooth abscess & a viral gastric flu
Dr thinks it could be an autoimmune condition. Has anyone come across this with hypothyroid?
Thank you for any advice.
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Polly91
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Hi, polly91. I am sorry but i can't offer you any specific help. I haven't kept up with my "thyroid education" since i stopped using ndt, about 2 yrs ago. My suggestion, if you haven't already done so, would be to google your exact question. It seems there are sites that may offer some insight. It looks like there can be many reasons for your symptoms. Like you are doing, i would first like to know if the sypmtoms are related to the thyroid condition/change in medication. I tend to read as much as possible, from many sites, before i approach my physician with concerns. Too often, too many doctors pull a diagnosis out of the air. They put you on meds you don't need and then you may have more symptoms. I wish you all the best.
Hypothyroidism can cause a build up around the nerve where is passes through bone sites such as the carpel tunnel. I had some tingling in my hands which resolved with a higher dose. I suggest you get your doctor to increase your dose to 100 mcg and see if things improve over a period of a few months. It is very unlikely that your palpitations were due to what is a low dose of levothyroxine.
It's worth supplementing with vitamin B12 (high dose methylcobalamin) as this sometimes helps with problems with nerve conduction.
I can't explain your weight loss, it wouldn't be due to too much thyriod hormone as you don't take a lot. I would keep an eye on this and get it checked out again if it continues. Although we tend to look at thyroid problems we have to keep in mind that not everything is due to our thyroid and be aware that signs and symptoms can have other causes.
My serum folate was 9.8 & B12 was 867ng/ml. I do take b complex but not daily (2-3 times/week).
TSH was 3.13
Free T4 was 18.3
All other bloods were normal except MCH was v slightly low (26.7pg when range is 27-32)
When I had palpitations 18 months ago my bp was raised (for me -as I’m normally hypotensive) and due to fact that I was 50 the GP thought to lower my dose to 75mcg back in Nov 2016.
I’ve been on 75mcg ever since and TSH hovers around 3.1 to 3.7.
The tingling gets worse on activity so I haven’t done any exercise/running which could? Explain the weight loss?? Also appetite loss doesn’t help.
Since the MRI didn’t show any nerve compression I’m at a loss (as is doctor). One worrying possibility is an autoimmune disease of peripheral nerves (I hope it’s not that as it sounds serious from what i have found on google).
Naproxen seems to help which makes me think inflammatory process around the nerves.
Any further help or advice is greatly appreciated.
I have ever been tested for Hashimotos- I was just prescribed 25mcg thyroxine when I was pregnant 17 years ago. The dose of thyroxine gradually went up to 125mcg but due to hyper symptoms like palpitations & reaching the grand old age of 50 the levothyroxine was reduced to 75mcg.
One other thing that is a worry regarding the cause of the tingling & hot sensation in limbs & extremities is that it does seem to improve a bit with Naproxen.
Does that suggest it's more likely to be related to nerve inflammation than hypothyroidism?
I also asked if you have Hashimotos - auto-immune thyroid. Have your antibodies been tested ? TPO & Tg.
Also low Iron can cause palpitations - do you have a Ferritin result ? Apologies if I have missed it 😴
Low MCH points to Macrocytic Anaemia and should be investigated with a FULL iron profile. This could be a cause of your symptoms. Your Doc should not have assumed you needed a dose reduction without investigating the cause of the palpitations. Don't think he knows what he is doing. Google Low MCH.
You didn’t miss anything Marz I forgot to get ferritin done in part because GP said I was not anemic. I will go back & ask. I have a v slightly low MCH & I have asthma so having read up just now on macrocytic anemia the asthma might explain the slightly low MCH 26.7pg (range is 27-32).
Thank you for picking this up.
If ferritin is a bit low what does it do to TSH (or to levothyroxine absorption)?
It doesn't do anything to absorption of Levo if Ferritin is low. If ferritin is low as well as other vitals then it could indicate you have absorption issues due to gut problems.
Is the asthma being treated ? I have always understood that as Iron is transported in the red blood cells and oxygen adheres to iron in the cells - that low iron = low oxygen = breathlessness.
There seems to be a connection with asthma and thyroid due to moisture/fluid levels. Its bedtime here in Crete so will have a look for info in the morning. I would still insist on a full Iron Profile.
Thank you for looking into this & all your advice. I suspect my GP will think my MCH is not low enough to warrant iron testing but I will ask. When you say full iron profile what does that include?
My asthma is not too bad these days & I should take becotide inhaler every day but I don’t like to as I don’t like taking the steroid even though they assure me the levels are low. (I have osteopenia & beginnings of cataracts so I try to steer clear of steroids if I can). Up until May I was running 4-5k regularly (3 x week ) I did get breathless but I felt ok & great when I stopped! So I think my asthma is quite well controlled but based on what I’m learning here I suspect an iron supplement might help my breathing when I run & make it a little easier on the longs.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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 articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances common too, especially gluten. So it's important to get both antibodies tested at least once .
I can’t tell you how happy I am to receive your message & I’m so hoping you are right about my TSH at 3.1 being too high and the cause of my symptoms.
My folate & B12 however were normal. I have not had vitamin D checked though.
I used to always have my TSH levels around 0.5 but after reaching 50 (& coincidentally after a v stressful period in my life ) and having palpitations my new GP thought it best to lower my levothyroxine so it was reduced to 100 & then 75 mcg about 6weeks later as the palpitations didn’t go away. He also said after age 50 years that 125mcg may have been too high for me. The levothyroxine package leaflet also suggests lower doses for anyone above 50.
I have never seen an endocrinologist & perhaps I should? I would have to go private - any recommendations?
One other thing I didn’t mention is I started taking HRT patches around the time my tingling started & they did not agree with me (lack of concentration, low mood & weight gain) so I stopped after 4 weeks. But the tingling just got worse & worse.
I will try to see my GP tomorrow & get a blood test for T4 & TSH & T3 (if he agrees to the latter) and vitamin D.
Thank you so so much - I can’t tell you how much your post has given me some hope.
That’s interesting as not what I was told! Also the package insert for thyroxine suggests starting with a lower dose for older people but maybe that’s only if you have never taken thyroxine before.
I've definitely heard about starting the elderly or frail people on a lower dose, and increasing it slowly, ditto for someone who has known heart problems.
But in general terms, as the body ages, I'm fairly certain I've read that any thyroid problems escalate. Certainly if you have thyroid antibodies, they can gradually destroy the thyroid over time.
And it's also quite common for thyroid problems to start or get worse with menopause.
I think your doc may be talking out of his bottom! But I'm no thyroid expert. It would be interesting to see what replies you'd get if you posted this as a new post so that more people see it!
I just wanted to tell you that I'm experiencing something quite similar to yourself.
I have a multinodular goitre and Hashimoto's, as well as typical hypothyroid symptoms such as extreme fatigue, thinning hair, dry skin etc. However in October of last year, after a nasty cold, I suddenly developed extreme tingling in my right hand and left foot, when then progressed to numbness and loss of senstation as well as terrible nerve pain. This happened within 3 days of fighting off the virus. My hand symptoms mimic those of carpal tunnel to a T, but test were coming back clear.
My Drs were baffled by the fact that all my MRIs and ultrasounds, as well as extensive blood tests showed no evidence of any inflammation or cause for my sudden symptoms. In fact, everything came back normal, apart from my elevated thyroid antibodies- which the Drs chose to dismiss. After 7 months of stating that they were completely baffled, and had even considered calling a neurological meeting to discuss my case, they decided to give me the diagnosis of autoimmune disease. Bearing in mind that my medical notes state that there is no evidence of any particular autoimmune condition, nor any inflammatory diseases, and that all my blood tests are NORMAL- they offered me an intensive 6 month steriod treatment plan, including chemo based immunosuppressants (methodextrate) which is usually used for conditions like lupus, rheumatoid arthritis etc.
I have since chosen to research and try and find a cure or some kind of relief for my symptoms, which thankfully have improved somewhat since they first appeared.
I am now taking liquid iron, 600mg Alpha Lipoic Acid, topical magnesium, and Vitamin D supplements daily, as well as removing gluten from my diet.
It's been two weeks since I've started this regimen, and so far I'm cautiously optimistic.
From my research online, there is a very strong link between thyroid conditions and neurological symptoms such as neuropathy and tingling, as well as fluid retention which is a factor in causing these symptoms. Unfortunately, it seems the medical community turns their nose up at all the evidence we as thyroid patients provide them, and stubbornly stick to their black and white teachings.
It's been a very hard 9 months for me, as I've had to leave work and my quality of life at home with my children and husband has diminished because of my symptoms, but I'm still holding some hope that this can be reversed or fixed some day.
I hope this wasn't too long of a post for you to read, but I just wanted to give you the full details so you know you're not alone x
Hello AlejandritaI am fine thanks. In fact more than fine. I feel well again.
Getting rid of infections like EBV and Lyme and getting my thyroid function optimal & removing foods that were inflammatory (gluten and dairy) and supplementing with the essential trace elements and vitamins has been the answer for me. It was not quick and I still follow a non dairy non gluten diet and take supplements but I do feel well again.
What are your symptoms and how long have you felt that way and do you have any results ?
There are a lot of kind, knowledgeable people on this forum who can advise better than me but I’m happy to share what helped me.
I became hypothyroid in 2017, due to a virus attack (mumps). It's not Hashimotos. I started Levo in 2020 (they didnt want to medicate until I reached TSH=10, I was already 8), but I insisted due to muscle and neurological symptoms. The thing is, symptoms have not resolved in spite of the medication. Fortunately, other neurological illnesses have been ruled out.
So all that's left is Thyroid (My t3 is just 2,58 on a 2-4,2 range) and a ferritin of 14.
Symptoms are: tingling in feet and hands, night paresthesias that come and go, sudden jerks when trying to sleep (similar to the classic "fall" feeling), fasciculations and fibrillations.
I have never had any issues with my energy levels, weight or Brain fog, even when my TSH reached 20 in 2017.
Hi Polly91, I've only just seen your reply, so apologies for the delay in getting back to you!
So these were the full Thyroid, Ferratin, and B12 results, with all other extensive tests coming back normal too.
They were done in Dec 2017 and Oct 2017 respectively, and the results were as follows:
Ferritin Oct: 17 normal range being (13-50)
Dec: 28 " " " "
TSH Oct: 0:83 normal range being (0.27- 4.2)
Dec: 1.23 " " " "
FT Oct: 17.1 normal range being (12.0- 22.0)
Dec: 15.4 " " " "
FT3: 4.9 normal range being (3.1- 6.8)
Dec: 4.9. " " " "
B12: 621.5 normal range being (197-771)
As you can see, my results are all normal, despite my thyroid antibodies being 250 and my multinodular goitre and severely inflamed thyroid.
Because the results are normal, I have been refused any thyroid medication, and am caught between neurologists who can't identify the cause of my neuropathy, and endos who aren't interested in looking into my thyroid issues further until I'm fully hypothyroid.
In regards to my symptoms over the years, I've suffered from pretty much all the usual hypo symptoms, including tingling here and there. It wasn't until Oct 2017 after I had a cold that I literally woke up one morning with no sensations in my three fingers and palm in my right hand, mimicking exactly carpal tunnel syndrome, which is why at first all the doctors thought it was that.
My left foot, just below swelling in my ankle, lost sensations too, spreading to the top of my foot.
Another thing I've noticed is that fatigue, and stress tend to make it worse. I know that if I've over exerted myself, or have been stressed out, the pins and needles and nerve pain get worse. Another accompanying symptom is muscle weakness, whereby I just feel incredibly weak and barely able to lift myself up onto my feet. Again, fatigue and stress make it worse.
All these symptoms can be found in relation to thyroid conditions- the swelling is caused by fluid retention which can then put pressure on the nerves, and carpal tunnel is a very issue with thyroid. Now the only thing is, the scans show no inflammation or nerve compressions- which is what baffled the doctors, and after months of telling me to just rest and wait, I feel like they felt they had to diagnose me with something to either save face, or experiment- hence the "unspecified autoimmune condition" and trying to push me to take immunosuppressants.
To make matters worse, this diagnosis is only given to me in person, whereas all reports to my gp state that my results show no indication of inflammation or specific autoimmune conditions, aside from raised thyroid antibodies.
My neurologist has now referred me to an endo, despite the consultant radiologist who diagnosed my multinodular goitre and thyroid inflammation recommending I see one way back in 2013, only for my GP to block his requests due to my normal results.
Gosh DaisyBelle you’ve had it really tough. I can see a few parallels between us & a few differences.
I definitely feel the pins & needles & pain much more if I’ve tried to do things. I used to be very active until end April but last 5 weeks have been quite immobile - my Physio recommended I don’t do too much so I stopped exercise classes & running as they seemed to be making the tingling worse.
Not sure why?
I will let you know what diagnosis I get (if any).
Did you get put on thyroid meds? How do you feel now? I hope you feel better
Thank you for your kind words Polly, it definitely hasn't been an easy ride.
There have been some improvements here and there, but the extreme fatigue and exhaustion are still the same, as well as the tingling. I've regained feeling in a few areas, which is giving me some hope that things could continue to improve, even if it's very slow paced.
Do you find that the tingling gets worse at night by any chance? One of the strangest aspects of my symptoms is that gets worse at night, or I wake up with new area being affected.
I'm seeing an Endo next month, so I'm hoping that by some miracle I get some thyroid meds, or that my thyroid levels meet the criteria required for them. I'm that desperate for thyroid treatment that I actually hope my thyroid has finally caved in and i get acknowledged by the medical community, as opposed to this horrid grey area I'm current in!
I'd really appreciate if you do keep me updated with any headway you make with your case, and I'd be happy to pass on any more information I get along the way too ☺️
It's interesting that you've noticed that things get worse at night too. I've spoken to a naturopath, and he recommended I see an osteopath because he suspects that it's to do with my back. I told him that the scans haven't showed up any trapped nerves or inflammation, but he mentioned something ( i can't remember what it was unfortunately) that can happen in the spine from coughing or retching hard- that won't show up in scans.
My symptoms began straight after a nasty cold, so there is that angle to explore, maybe that's something you might try to look into also?
I did have a cold about 6 months ago & again it was a stressful time (lost a good friend to bowel cancer) & if I think back it’s possible the first symptoms did start then in my wrist. But they didn’t get bad for another 3-4 months.
Stress can have such a negative impact on our physical health, but is almost always overlooked.
I hope the stress has eased up somewhat, although the loss of a loved one can never fully be forgotten.
I'm starting to think that the naturopath may have had a point in regards to my back, as I get a pulling sensation beneath my right shoulder blade when laying down, which causes my right arm to tingle.
This is starting to take on a Scooby Doo-esque type of mystery that I'm trying to solve; Hashimoto's, goitre, possible back injury, and the obligatory stress, stay tuned to find out the culprit! 😁
Btw, Have you tried using a magnesium spray at all? I've found it to be quite effective in relieving the tingling and numbness.
My last test done Aug 2017 was FT3 4.2pmol/l (3.2-6.8)
I’ve just had tests done today so will post my results when I get them.
Thank you
I am now well since using this site I post my blood test results with the ranges, what medication and how much together with how I feel and wait for answers it works.
I too am hoping desperately that GP us wrong & this forum is right.
Muffy I don’t normally get FT3 tested but it was tested today along with T4 and vitamin D. GP wouldn’t do TSH because it was done in April & was only slightly high (according to him ). It was 3.1. I will post my results when I get them & hope this great group can help.
I’m struggling at the moment as I can’t sleep for arm pain & tingling & last night I even had diarrhoea (possibly caused by naproxen? Anyone had that?)
Hi Polly91, I know your post is from a while ago but did you ever get to the bottom of your symptoms? I was diagnosed hashinotos last August and get the tingling sensation in my feet and fingers sometimes as well as twitchy legs which I think could be RLS. I’m supplementing iron as my levels were rock bottom the normal range and my MCH was also low like yours and I’m hoping that will help. Find that doctors are a bit useless and think I’m imagining it!
Hi I think my symptoms were down to a combination of low thyroid hormone & chronic infections. The tingling has gone but I still get heat symptoms in hands/feet or occasional buzzing in my feet & intermittent arm ache (like a trapped nerve) but overall I’m so much better.
I’ve been taking more thyroxine and loads of supplements to help my immune system.
Plse private message me if you want to know more.good luck.
Thank you! It’s reassuring to know that other people experience similar symptoms and feel better! It’s taking some getting used to all these new sensations which I didn’t have before hashi’s and plays havoc with my anxiety sometimes.
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