So my symptoms started months ago with a drum and base tinnitus one night, the next night I got this feeling that I was dissolving, cold sensations on my skin, tingles in legs, arms and lips and loud tinnitus with eardrum spasms. Months before this I had occasionally some kind of muscle forehead contractions during the night. I got an mri that came out ok and blood work that showed low vit d, increased fibrinogen and lazy thyroid( tsh 5,79).
Now i repetead a tsh, t3, rt3, t4, tgb blood work and they came back between normal range.( Tsh 3,57).My d vitamin went from 15 to now 77 ng wich is a bit over the limit.
I still have some tinnitus, my forehead is contracting and tingling, also this tingles travel to my temples and eyelids. I also have some minor leg spasms.During this months I almost constant experienced a type of tingling, burning feeling of my scalp.
Could you help me with some answers?
Feeling scared
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Cristina1
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Did you look at the B12 link I posted for you ? You can click onto Signs and Symptoms where the Neurological list is informative ... are you supplementing B12 or a B Complex ?
No i didn't look at it, my B12 was 517 pg/ml (between normal lab ranges) so i excluded that...as for b vitamins i am not supplementing..do you think it can help with the burning and tingling scalp and forehead/eyelids?
The B12 test you had contains both bound and unbound B12. Only 20% of your blood result is available to reach the cells where it is needed. Some people have issues with B12 getting into the cells. Why not read the link and learn of the complexities of B12. Testing MMA and Homocysteine can be helpful - if high in range it can suggest low B12 in the cells. All explained in the link 🌻
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
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, best not mentioned to GP or phlebotomist)
Vit D - 77.1 - ng/ml__________ optimal level 30 - 55.5
Tg - 25.69 - ng/ml____________3.5 - 77 ng
T3 - 1.3 - nmol/L_____________1.3 - 3.1
FT4 - 0.89 - ng/dl____________0.89 - 1.76
Anti tpo - 25.9 - ui/ ml_________<35
B12 - 517 - pg/ml______________211-911
Fibrinogen - 539- mg/ dl_______220-496 mg/dl
I took the first tsh test about 4 months ago and my tsh came back at
5.79 so it decreased slightly to 3.57.
I do not take any medication and it was about 8 am or 8 30 when I drew blood for my lab checks.
I went to an endo and she did an ultrasound and said that i have intense thyroid vascularisation and that's not ok apparently. She wrote on my lab request "hypotyroidism"suspect or smth like that.
What else...i was breastfeeding alot and eating a lot of carbs before my symtoms(bread, pizza, pasta).
My most annoying symptom is the scalp burning and tingling that runs to my temples, eyelids and even the tip of my nose.
I have to go with my results to my gp or to my endo...no big hopes there.
endo and she did an ultrasound and said that i have intense thyroid vascularisation and that's not ok apparently. She wrote on my lab request "hypotyroidism"suspect or smth like that.
So this seems to suggest Hashimoto’s
20% of Hashimoto's patients never have raised antibodies
Essential to also test iron and ferritin and folate
Low ferritin common issue
Hashimoto’s patients need nutrient rich, often low carb diet....frequently gluten free
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
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Thank you for the ample and detailed reaponse. I added de t4 above.Since before my symptoms i was eating a lot of bread, pizza and pasta i think that gluten was the last straw. From what i read generally speaking gluten is not healthy for the gut or anything else.
I did cut out gluten and i am eating healthier, more fruits especially, lean meat and i added turmeric and brazil nuts. I am trying to incorporate as many thyroid helping foods. I will see how it goes. I will probably check with another endo next month to get a second opinion and if i don-t feel better then i guess i will start with some small dose of eutyrox.
As an example....if, when perfectly healthy, your own thyroid made the equivalent of 125mcg levothyroxine....and this metabolism is controlled by pituitary sending messages - TSH (Thyroid stimulating hormone)
Then as your thyroid starts to fail (usually due to autoimmune thyroid disease) ....you might get diagnosed when your thyroid has reduced output to roughly equivalent of 75mcg levothyroxine
Pituitary has noticed there’s a drop in thyroid hormones in the blood....(that’s Ft4 and, most importantly, the active hormone Ft3) ....so to try to make more thyroid hormone ...pituitary sends out stronger message to thyroid - TSH rises up
When GP starts you on 50mcg ....initially you feel a bit better ....as you have 75mcg from your own thyroid and 50mcg levothyroxine
But (here’s the bit many don’t understand)....levothyroxine doesn’t “top up” your own thyroid output.....well it does very briefly....but the pituitary very soon “sees” the levothyroxine in the blood....and TSH starts to drop
So at the end of week 6 ....TSH has dropped a lot. Your thyroid takes a rest ....has a holiday
So at this point you are now only mainly using the 50mcg levothyroxine....which is actually a dose reduction down from managing on 75mcg from your own thyroid before you started on levothyroxine
So you start to feel worse .....and are ready for next 25mcg dose increase in levothyroxine
Modern thinking ....and New NICE guidelines suggests it might actually be better to start on higher dose .....but many medics just don’t read guidelines ....and many patients can’t tolerate starting on more than 50mcg and need to increase slowly.
Starting on 50mcg and stepping dose up in 25mcg steps, retesting 6-8 weeks after each increase. But we still very often need to increase up to full replacement dose
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.
Thank you so much for the advice and informations!
On a side note, how can you be sure if you have hashi or just some type of hypotyroidism? If no tpo-s are detectable is it still autoimmune?
Other than burning scalp/tingling,ear ringing and now my throat kind of hurts i do not have any symptoms like weight gain and fatigue..i have a skinny frame.
Is the treatment the same?
I ask because you seem very knowledgeble and most doctors don-t even bother to answer or explain something to you.
Hi Cristina1 Sorry to hear you're not feeling great. If it helps, I'm just at the start of my 'thyroid journey' and am / have experienced the symptoms you're describing (plus many others).
I've also been anxious about tingles, twitches and spasms all over my body but things are starting to calm down a little after 3 hellish months.
I can't pinpoint any one thing which is helping. I take supplements, gluten free, avoid stress, support adrenals etc.etc.
I'm also learning the relationship between the Thyroid, the gut and the adrenals is linked and complicated. But I'm guessing it's largely down to improving FT4/FT3?
I find keeping a journal of symptoms helps and, of course, following the advice of the good people on this forum, which has helped me massively. In fact, I don't know what state I would be in if I hadn't found this forum so quickly.
I don't make many replies but I know how reassuring it can be when someone puts their hand up and says 'this is happening to me, too'. And it's linked to the condition.
I don't mind saying, this Hashimoto's thing has smashed me on every level... physically, mentally and emotionally. It seemed to come out of nowhere about 3 months ago. But now I can see there were many signs and signals leading up to a diagnosis which I didn't see were linked (for about 2 years). And I'm guessing I've probably been running on my adrenals for sometime without knowing.
I've been scared, anxious and exhausted by all the stuff that's happening but I'm I starting to understand it a bit better. It just takes a bit of time. If you're new here, try reading as much as you can about hypothyroidism.... and keep off Google.
And take note of what the good people who run this forum suggest. They've learned the hard way.
I haven't suffered nearly as bad as the majority of people who visit this forum, largely because I'm benefiting from years of others people's experiences.
I was breastfeeding a lot and eating a lot of carbs before i began having the forehead contractions( pizza, bread, muffins,pasta)..i was also stressed, sad, cried many times. I have been googling a lot..saw that the tingling and spasming could also be signs of MS and i felt terrified just thinking about it but i had an mri and it came out normal. My endo said at my thyroid ultra that she sees intense vascularisation.
So now i have to go back with my lab results. She previously gave me Eutyrox 25 mg but i do not take them...i guess i am hoping that i can bounce back out of this with diet changes for a start.
It sounds like your symptoms have improved during the last months, I am happy for you.
I'm not experienced or knowledgable enough to comment on meds. But if there's one thing I've learned from the smart people on this forum is if your thyroid is failing you'll need to support it with meds. Little else can be done. Hoping to bounce back might be too hopeful, I'm afraid?
But hopefully someone can comment on your results and offer some more help.
(You'll need to add lab ranges after your results e.g. FT4 22.1 (12 - 22) and provide as much detail as you can about meds, condition etc. Then reply to Marz or SlowDragon )
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are these symptoms really hypothyroid?
shall I reduce levothyroxine based on these symptoms and results?
Please help with these test results
Looking for general advice please.
does anyone have these symptoms ?
