Hi. 5 years ago I was told I had a under active thyroid. T4 and t3 were in range but tsh was 45 at the time. I just had a little girl 3 months prior. I was put on Levo. After a week or so I began getting migraines and my ear swelled up. Ended up in emergency care who said I nasty ear infection. My ear drum was nearly pushed the other way due to fluid. Stopped the levo because I told them it happened just as I took that.. it went away.. took it the next week and it happened again. Somehow my tsh ended back to normal and I stopped and started levo (doctor knew) because they wouldn't give me anything else to try. I than had my second lg and my tsh shot up to 60. I again went to the doctors had a blood test and they put me on levo. T3 and t4 still in range. It happened again this time I kept taking it cause I was so unwell and I ended up needing a MRI scan due to my ear drum. Ended up being referred to a endo. Waste of time. She didn't no why it was happening but she did offer me t4 and beta blockers to stop the heart palpitations. I got chest pain and ended in a and e and was immediately taken of it. I than went back on t4 and the ear thing happened again. The endo took me off everything to get my ear sorted. He said he wasn't to worried as t3 and t4 were in range. I than sorted out my ear and mri showed no damage which was great. No one seemed to help. So I paid privately to see a professor who done my blood test and it came down to 25. Than he done it again a week later and it came down to 6. I had gone on a gluten and dairy free diet and he told me to carry on like I was and that he think I had post partum thryoidisit both times and just takes a while for my tsh to go down. It's been 6 months now without any meds and tsh is 7. So went up by 1. No meds at all. Still gluten and dairy free. But I have bad bad fatigue tirednessed exhaustion and leg pains. Feel so tired constantly. I can't go back on t4 cause there put it down that I'm allergic to the t4. And I had post partum thryoidisit. Any help?
Need help.: Hi. 5 years ago I was told I had a... - Thyroid UK
Need help.
Most people feel well with a TSH of about 1 so yours is very high. Do you have the results of your T4 and T3? Just to add I do know that pregnancy can affect your thyroid and it can be temporary and it can return to normal. As for the ear connection a lot of people who have thyroid disease can suffer with their ears and some have tinnitus because of it. Just because you are told your T4 and T3 are in range doesn't always mean it is the right range for you and they might be very low in the range which can cause symptoms.
Thyroid function test
Serum TSH level 7.45 mu/L [0.35 - 3.5]
Above high reference limit
Serum free T4 level 9.3 pmol/L [7.5 - 21.1]
And t3 wasn't done this time but it's always been on the higher end. T4 has always been on the lower side.
I don't have ear problems at all just when I take the levo so I no it's the levo. I end up so unwell with vertigo and dizziness and can't even drive or work. Soon as I come of it it slowly goes and I'm fine.
He thinks it was post partum thryoidisit but my legs are achy and soemfimes very painful and I'm so exhausted 
X
Your T4 is too low and needs to be higher so I think your T3 will also be low and that is why you are getting symptoms
Ok. But I can't take levo or t3
I would suggest NDT but that is very hard to obtain a prescription for in the UK. Hopefully someone will be along to advise you more about this.
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists and doctors who will prescribe NDT
tukadmin@thyroiduk.org
We strongly recommend getting FULL thyroid and vitamin testing BEFORE any consultation
Likely you have low vitamin levels as you are clearly hypothyroid
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
Presumably you have Hashimoto’s
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 .
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
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Medichecks - JUST vitamin testing including folate - DIY finger prick test
medichecks.com/products/nut...
Medichecks often have special offers, if order on Thursdays
NDT is EXTREMELY difficult to get prescribed on NHS.....but not impossible
But likely need to start via private consultation and private prescription
Thank you for your reply.
Yes my vitamins are tested every few months due to low levels.
Folate is 1.3 as we speak and supplementing it. I take an iron a day cause my ferritin always go low so yes my vitamins are always low.
I had my antibodies tested and it was 200+ . I was told I hashitmos disease
But I'm constantly tired and exhausted. And it's ruining my life I know I work and have two children but I'm struggling to stay awake past 8.
I've emailed my doctor's to get another blood test done and may contact my private endo and see what else be advises
I've lost two stone in weight the 6 months. Private endo said I don't look like a thryoid patient .. he thinks I have a mutation somewhere that's effecting my tsh. And cause I can lose weight he said people can't lose weight when they hypo. Im so confused with it all x
The majority of hypothyroid patients do gain weight ....but a significant minority struggle to maintain weight or loose lots of weight
Low vitamin levels suggests poor gut function
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
healthcheckshop.co.uk/store...?
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
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
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
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
restartmed.com/hashimotos-g...
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.
Why gluten intolerance can upset cortisol levels
kalishinstitute.com/blog/gl...
I've been on a gluten free and dairy free diet for 10 months. That's how I've lost the 2 stone. However my iron and vitamins have improved since going on gluten free but some are still low.
Xx
So you need to regularly retest and work on improving vitamins
Ok. I am trying to do that. Didn't no weather I needed go on any medication for thyroid x
Well your thyroid results suggest you are hypothyroid and definitely need replacement hormones
Hashimoto’s slowly destroys thyroid.
I'm now getting a blood test to see what happening. I'll contact my endo x thank you for your help x
Blood drawn for thyroid hormones should be at the earliest, fasting (you can drink water) and if you were on thyroid hormones, you'd allow a gap of 24 hours between dose and test and take it afterwards.
Thank you. They have me in at 1.45 I'm on no meds x
Vitamin levels need to be OPTIMAL to tolerate replacement thyroid hormones
Vitamin D at least around 80nmol and around 100nmol maybe better
Folate at least half way through range
Serum B12 at least over 500
Ferritin at least half way through range
So if folate is currently deficient
Has GP prescribed folic acid?
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be more beneficial than just folic acid
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
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 ALL test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Low B12 symptoms
What’s your diet like
Are you vegetarian or vegan?
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/Websites/...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
healthunlocked.com/thyroidu...
Thyroid disease is as much about optimising vitamins as thyroid hormones
Helpful post about iron supplements and testing
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post about iron supplements
healthunlocked.com/thyroidu...
Post discussing just how long it can take to raise low ferritin
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