I have been on thyroxine 100mg for the last three years regularly doing blood test without any issues or notifications from my nhs doctor to say anything was wrong.
I started having weird intermittent feelings in my head like shivers going from my neck to my forehead.
About a week later I woke up with a stiff neck.
Over the last week I have felt what I can only describe as inflammation building up on my forehead my eye brow have swollen and now cover my eye lashes. I feel like every day the inflammation is creeping down the front of my face. It seems like Peripheral neuropathy.
At the same time I am being woken up in the middle of the night with a rapid heartbeat which I can only describe like I have two hearts beating at the same time and it feels like the whole bed is wobbling and then I'm having panic attack because of the unknown causes
I could only phone the doctor at the moment nobody would see me they prescribed me amitriptyline 1 week ago, I have slept better except last night I still woke with fast heartbeat hot sweats and panicking I nearly called an ambulance.
Because this has been going on for a while I decided to pay privately and got a blood test as well.
It show my TSH is 7.81 but strangely my free T4 is also high 26.5
I was advised to stop my 100mcg of Levothyroxine immediately and to reduce to 50mcg in 3 days time.
I currently just feel like a bundle of nerves, dizzy, shaking and the weird sensation in my neck and head like I said inflammation around my forehead/face
I wrote a letter to my nhs doctor asking for urgent referral to endocrinology but he rejected my request due to the corona virus.
I just am panicking a bit any help or advise would go a long way to help ease my anxiety and nerves.
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pauliop81
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The mixture of high FT4 and high TSH is highly unusual if you have been going well on your dose for a while. It sets one wondering if the TSH test has been interfered with by human antibodies that react with the test's mouse proteins, in your blood. If so the TSH should be done by a different test as not all tests are susceptible to the same interferences. Also, with the high FT4, a FT3 test should be done to make sure you aren't overdosing. I don't think a drastic drop in T4 dosing is the answer, but maybe a drop to 75ug to see how things go. Too drastic a drop (halving) can cause a lot of other problems.
Looking at previous post from 6 years ago you have had issues with high TSH previously
Suggest you follow up on diogenes advice
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 as you have Hashimoto’s
What vitamin supplements are you currently taking?
Ask GP to test vitamin levels ASAP
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)
Is this how you do your tests?
If you had blood test soon after taking levothyroxine Ft4 is false high result
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Thanks yes I was diagnosed with autoimmune thyroid about 4 years ago and have been fine until this week, I've come over all funny, fast resting heartbeat (100+ all day) what feels like water retention/inflammation slowly building over the week on my forehead mainly, and a little bit of my face. Generally dizzy.
I paid privately for this test but it was loads of counts of all sorts,. But thyroid was only T4 and tsh the test was around midday and I did take my 100mcg as usual in the morning.
My antibodies whenever I get tested are >1000 so I don't worry about paying for that one anymore.
I am currently taking 1000 mg vitamin c and 50pg vitamin D supplement.
One doctor prescribed me amitriptyline 10mcg
They wanted to give me beta blockers as well but I'm not one for wanting so much medication I did turn them down but I am trembling constantly and with the fast heartbeat and high tsh I think it's the anxiety. But I think I probably might change my mind about them.
I will have to try your recommended method of obtaining more accurate results.
Have you had different brand of levothyroxine recently?
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Essential to test Ft3 and all four vitamins
Your antibodies are very high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten intolerance. Second most common is lactose intolerance
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find strictly gluten free diet reduces symptoms, sometimes significantly. Either due to 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, or buy test online BEFORE trying strictly gluten free diet
Assuming test is negative you can immediately go on strictly gluten free diet
If coeliac test is positive you will need to remain on high gluten diet until endoscopy, with maximum 6 weeks wait, officially
Trying strictly gluten free diet for 3-6 months
If no noticeable improvement, reintroduce gluten and see if symptoms get worse
It's been two weeks and I needed to write an update.
I have been reduced my dose from 100mcg to 75mcg Levothyroxine.
I feel worse at the moment. I have seen three doctors and they are all saying it's anxiety. And prescribed me propranolol However I think that may have developed because of my thyroid.
My initial symptom showed overactive thyroid because of fast heartbeat and trembles.
But currently I feel under active though.
I have No energy and I'm not sleeping. I have developed extreme anxiety and Trembles.
What worries me more is My neck aches, my eye brows/forehead feels like there is inflammation. My temporal bones on the back of hunt head aches and my spine feels like it's burning. I sometimes get neuropathy across my head too.
I don't know if that's is anxiety related but I believe it's my thyroid.
Is two weeks enough time for retesting after does change?.
I have order the thyroid £179 vit + blood test kit from medichecks
Do you mean the thyroid plus ultra vitamin test at £79?
Ideally you would wait 6 weeks .....but if feeling dreadful it’s likely you have low vitamin levels and possibly low Ft3
Do you always get same brand of levothyroxine?
Teva brand upsets many many people (is only brand that makes 75mcg tablet)
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)
Is this how you do your tests?
Only do test on Monday or Tuesday
Remember to stop taking any supplements that contain biotin a week before any blood tests
Never ever take levothyroxine before blood test as it causes false high Ft4
Antibiotics can badly affect stomach biome and then poor absorption of levothyroxine means drop in levels....leading to low stomach acid
Next time you order a test ...don’t bother to pay to reverse T3 test ...it’s expensive, takes a long time to process and reverse T3 isn’t really worth testing
Perhaps reorder Thyroid plus ultra vitamin - only £99 (and 25% off at moment) ....if they will accept return on other test?
High heart rate can be due to low iron/ferritin and/or being under medicated....doesn’t necessarily mean over medicated
Vitamin B12 - Active 61.400 pmol/L (Range: > 37.5)
Vitamin D 57.3 nmol/L (Range: 50 - 175)
TSH 6.28 mIU/L (Range: 0.27 - 4.2)
Free T3 4.78 pmol/L (Range: 3.1 - 6.8)
Free Thyroxine 20.400 pmol/L (Range: 12 - 22)
I already know about the Hashimotos
Thyroglobulin Antibodies X 370.000 kIU/L (Range: < 115)
Thyroid Peroxidase Antibodies X 164 kIU/L (Range: < 34)
I have returned my Levothyroxine to 100mcg
This is the dose I have taken for a long time before all my problems started.
I have start a B complex vitamin and a 5000 Vitamin D Tablet.
I forgot to add to my first post on top of all those strange symptom this all started when I was prescribed Metronidazol and omeprozole. I was taking all these medications quite close together with my thyroxine in the morning.
I have stopped both aver a month ago but all my symptoms have remained.
Nephropathy
Anxiety (face inflammation or perceived face inflammation)
It turns out I have tested positive for the coronavirus
all my my CNS problems are probably related to that, as some of the rarer symptoms. I have felt like this some at least 2 months which is the worrying thing.
Nephropathy
Anxiety
(face inflammation or perceived face inflammation)
I think loosing taste is an early symptom...so you may not have had Covid that long ....but lack of testing means thousands of us may have had in and no idea....unless they can get antibodies test working reliably
I very likely had Covid in late Feb/very early March ....couldn’t get tested obliviously
Make sure to keep your vitamin D level up ....at least 75nmol
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Very low TSH and High T4
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TSH reflex to free T4 
