I don't suppose anyone has experienced sensory disturbance and connected it to thyroid issues?
For a couple of years I've had unexplained tingling / prickling sensations in my hands that come and go in my lower legs and feet (predominantly in my left foot). I initially saw a neurologist who did an MRI scan and gave me the all clear in relation to anything sinister, but the cause was never found. It largely went away, but since recently upping my levothyroxine, the sensations have come back very noticeably. My endocrinologist doesn't have an answer, but says it could be my metabolism coming back...
I'm continually amazed by the breadth of symptoms that are connected to this condition, and - inspired by an earlier post about sleep disruption caused by hypothyroidism - I thought it was worth seeing if this too could be connected.
Thanks in advance!
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London3891
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Yes London3891, I've had the sensory/neurological issues with Hashi's. Despite being on Levo for 18 months I still experience sensititivity to light, noise and smell. The tingling in hands and feet now gone due to regular B12 injections mainly and getting other vitamins D and ferritin optimal. I still can't tolerate the telly as the images move too quickly for me. Perhaps it would be an idea to post your most recent blood tests and get vitamin levels checked if not yet done so. Best wishes, E x
Hi London3891, have you had your vitamin levels checked recently. I had a similar sensation to hands and legs when my thyroid condition was under medicated & key vitamins not in range. Taking a good B Complex (as recommended by Seaside Susie) really helped me. I take Thorne Basic B every day.
Scroll down for the beginning of the list. neurological symptoms come first. Great website for information - check out the videos to under the heading Films in the Menu.
I have had gut surgery for TB and Crohns so now self-inject weekly ....
Do test before supplementing.
EDIT: I see you have been tested and B12 looks reasonable - umm I wonder if it is getting into the cells ?
Bloods should be retested 6-8 weeks after each dose or brand change in levothyroxine
The aim of levothyroxine is to increase dose upwards until TSH is under 2, most people will have TSH well under one, Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) .
EXTREMELY .important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies if not been tested yet
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Typically dose levothyroxine is started at 50mcg and increased slowly upwards (retesting regularly 6-8 weeks after each dose increase) until on around 1.6mcg per kilo of your weight
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Thank you, SlowDragon, reassuring to know this isn’t uncommon!
I am having blood tests again in 3 weeks so will post more fully with ranges etc. then, but I know my most recent levels taken a week ago were:
TSH: 1.34
T3: 4.37
(I don’t know ranges or T4 as endo read them out very quickly over the phone).
These are the best they have been all year. I started in August on 50mcg Levo and had increased to 100 per day at the point when these tests were done.
The endo has now increased my dose to 800mcg per week (125 on
4 days a week, 100 on 3 days a week).
I can see T3 is not yet there, but what’s confusing is that things seem to be going in the right direction, but then I’ve suddenly had this flare up of sensory disturbance.
I will ask for my vitamins to be checked out again next time.
I really hope so! Although I’m trying to keep calm about it, there’s something about neurological symptoms that really scares me.
I started on 50 mcg (Teva) in August, and had 5 bad weeks of bloating / abdominal discomfort, so I stopped all Levo for 5 weeks (initially felt great then symptoms came back).
I restarted on 50 mcg (Actavis) at the end of October for 3 weeks, increasing to 4x100 and 3x50 (550) per week after that. The GI symptoms remained bad, so I moved onto liquid at the start of December, taking 100 mcg each day.
It was a couple days after the switch to liquid that I started feeling the tingling / prickling sensations again.
As of two days ago, I’ve upped my dose to 4x125 and 3x100 (800 per week) on the advice of my endo.
I have always suffered from intense pins and needles a few weeks after increasing to optimal levels
Currently experiencing it again, after recent (failed) experiment to reduce levothyroxine slightly. Having put dose back up 4 weeks ago, and steadily improving. (More on my profile)
Taking some B12 for a few week may help and/or daily vitamin B complex
I did have vitamins and iron tested - all in range but ferritin was at the low end.
I didn’t realise that B12 might not be getting into the cells though...is there a way to find out?
My endo seemed satisfied with my vitamin levels, but did offer me iron supplements on account of the low ferritin. My plan was to add this in once I’d got to good levels of TSH/T3/T4...(am wary of changing too many variables at once and being unable to unpick what’s causing what, as I also had GI symptoms and other reactions to levo tablets - I’m now taking liquid instead and these issues are largely resolved).
You could ask for your homocysteine to be checked (and MMA if possible). High homocysteine would indicate that either/both of B vitamin deficiencies (folate, B12, B6) and genetic variant/s (common) may be affecting you. I ended up having to do a genetic test as doctor wouldn't do the others, and have benefitted considerably from small amounts of methyltetrahydrofolate and more methlycobalamin. Better to get it diagnosed properly if at all possible. Private tests can be done. Your family history might give you clues - anyone with pernicious anaemia, or B12 deficiency, or anything linked to problems with myelination.
I'm convinced that 99% of all symptoms experienced by thyroid patients will be corrected with enough T3. I've had so many oddball symptoms from sensitivity to light, smell and touch, trouble breathing, sleep disruption. I get jumpy and adrenaline spikes. Smokey and blurred vision. I've had the tingling hands and feet. I started to get ocular migraines and ringing in ears, weird flushing sensations in my head. You'd think I was on my deathbed but I'm only 40. I once described having hypothyroidism as a slow death...but I'm working on that.
Hi London, I hope this helps you out some. I have had those same issues when my t3 was extremely low and under medicated but once I raised my levels it all sorted itself out. Good luck to you and Merry Christmas!
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