I have had another heart episode and ended up in A and E last night as I have been told to ring 999 when it happens. I am currently waiting for a 24 hour heart monitor and echocardiogram, and have been waiting nearly 8 weeks because of the hospital situation at the moment. I have got an appointment for the end of November, but have now been referred to the heart clinic to see if it can be brought forward. I was given a beta blocker and 2 ECG's. I have been told that my TSH was under 1 and the Doctor hadn't written it down. He said my T4 was 25 and slightly raised and my T3 was 4.4. The Doctor discussed my thyroid levels with me but said it's not just that as I have been having other issues with my Pernicious Anaemia and have now been put on 4 weekly b12 injections. I have had neurological symptoms and I had a heart episode 2 weeks ago and my legs actually stopped working properly and I had to be taken to hospital in an ambulance. I was given a b12 injection at the hospital after seeing 5 Doctors and only one of them had knowledge of Pernicious Anaemia and neurological problems and Hashimoto's Thyroiditis. He sent me for an MRI scan to see if I had any damage to the myelin sheath on my spine and luckily I haven't. Three of the A and E Doctors were writing in their reports to my Doctor to ask for me to be given 4 weekly b12 injections instead of 6 weekly. I have now reduced my Levothyroxine from 150mcg to 125mcg as I have managed to split my 50mcg tablet in half. I have to have Accord Levothyroxine which was previously called Activas and can't have another brand of Levothyroxine as I have reactions to them. Can anyone tell me if my T3 level is ok because as we all know that never gets tested normally and I was shocked it had been done. The last time mine was done was 13 years ago when I was first diagnosed with my thyroid
T3 levels 4.4: I have had another heart episode... - Thyroid UK
T3 - do you have a range ? The ranges do vary from lab to lab .. so difficult to say if it is OK.
What other vitamin supplements are you currently taking apart from B12 injections
Can see you have Hashimoto’s
Are you on strictly gluten free diet?
Several members are convinced the Accord tablets have changed when they were rebranded from Activis
Bloods should be retested 6-8 weeks after reducing dose levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Ask GP to test folate, vitamin d and ferritin levels NOW
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
List of private testing options
Medichecks Thyroid plus vitamins including folate (private blood draw required)
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
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
Your Ft3 looks low. Obviously reducing levothyroxine likely to cause Ft3 to drop even lower
Getting all four vitamins OPTIMAL helps improve conversion of Ft4 to Ft3
Strictly gluten free diet helps or is essential for high percentage of Hashimoto’s patients
But if, Ft3 remains low, then likely you may need addition of small doses of T3 alongside levothyroxine
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private....who will prescribe T3 if necessary
Thanks for all that information and I will keep at my 150mcg Levothyroxine as I didn't realise that my T3 could drop lower. It's just I keep being told my T4 is too high and could be causing the heart problems but I am not convinced. I have only just started taking Folate tablets a couple of months ago as I learnt from the B12 Pernicious Anaemia support group that my levels were in the lower range. My last Ferritin result from January 2018 was 17 ug/L and the range was 10-291. I take Calcichew three times a day after seeing the Haematologist last year who said my levels still weren't high enough. I have also been wondering if they have changed the ingredients in the Accord Levothyroxine, but would be very unsure about which brand to change to. My 30 year old Daughter has only just been diagnosed with Hashimoto's a few months ago and she takes Mercury pharma so I wondered if it would be worth trying that brand. I am not on a gluten free diet and I only have my blood tests done at the Doctor's but more recently during my past 4 hospital admissions. Should also mention that my thyroid blood test yesterday at the hospital was done at about 9pm in the evening, and I normally have blood tests done in the morning. I have had 2 other thyroid blood tests done at the hospital because of my heart episodes and they have come back as ok
Low vitamin levels leads to poor conversion of Ft4 to Ft3. This results in high above range Ft4.....and can cause symptoms due to Ft4 being too high
What time of day do you normally take levothyroxine?
Exactly what folate supplement are you taking?
We recommend on here supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help maintain B12 levels too between injections
Difference between folate and folic acid
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
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 test results
I am taking Folic Acid 5mg capsules that are 5000MCG high strength
When was folate last tested
Many Hashimoto’s patients find it better to take a vitamin B complex with FOLATE in
Ferritin was absolutely dire
Presumably GP has done full iron panel test for anaemia before prescribing ferrous fumerate, (2 or 3 per day ) or are you having iron infusion
Never supplement iron without doing full iron panel test for anaemia first
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
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.
Helpful post about iron supplements and testing
Post about iron supplements
Post discussing just how long it can take to raise low ferritin
Thyroid disease is as much about optimising vitamins as thyroid hormones
Suggest you read many of humanbean detailed replies on iron and ferritin
Are you saying my Ferritin level is very low as I don't understand how the levels are worked out. I have never been given any ferritin to take or had iron infusions and I had a hysterectomy 22 years ago and I am not a vegetarian
When we take levothyroxine we need optimal vitamin levels to help levothyroxine (Ft4) convert into the active form (ft3)
Low vitamin levels are extremely common on levothyroxine, and low vitamin levels tend to lead to low Ft3
Low Ft3 leads to low stomach acid and poor nutrient absorption....
And vitamin levels drop further
Basically whole system spirals downwards
Many people on levothyroxine need to supplement vitamins virtually continuously to maintain optimal levels
See GP to discuss very low ferritin (storage iron)
Important to get full iron panel test. You can have very low ferritin but iron not be low
Ok I understand now. I take my Levothyroxine in the morning and my magnesium level in July this year was 0.90 mmol/L the range is 0.70-1.00
Lastly it’s absolutely essential to test vitamin D twice year when supplementing
Exactly how much vitamin D are you currently taking?
GP will often only prescribe to bring levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
NHS Guidelines on dose vitamin D required
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol
Government recommends everyone supplement October to April
With your Vit D, are you also taking it's important cofactors - magnesium and Vit K2-MK7?
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
Vitamin K2 mk7
I take Calcichew prescribed by my Doctor and it's 500mg/400 IU. My last vitamin D blood test result in January was 70
Impossible to tell if FT3 is good or not without the lab range, but it looks low-ish in range according to most common ones
Forgive me for jumping in, does anyone think the change from Activis to Accord could be related to cardiac symptoms. Others on the forum have raised this. Since the switch from Activis to Accord, I have reported to my GP heart racing episodes at night. T4 over-replacement has been suggested as the cause. Having Medichecks and NHS blood tests next week to investigate.
I have been reading the posts about the change from Activas to Accord and I am going to change my brand of Levothyroxine. I am just worried because like everyone else on here it's hard to find a brand that doesn't give symptoms with fillers and ingredients. I have had an awful tight feeling like a band across the top of my stomach like I can't digest my food properly as well as the heart episodes. I though it was my Pernicious Anaemia. I will fill in a yellow card too
I'm going to Yellow Card Accord Levothyroxine and research changing brands, too. But won't be changing to Teva as I previously had to Yellow Card their Levothyroxine. In the wider picture, is this pointing towards the need for T3 treatment? Like you, I have Hashimoto's. Do you know if your T4/T3 conversion is good or poor? Hope you start to feel better soon.
I have got no idea about my conversion because you never get to see an Endocrinologist and the Doctor's aren't much bothered. All they have said is your T4 is too high and drop your Levothyroxine, but the A and E Doctor hasn't said that. I have all my TSH and T4 levels on Patient Access on a graph and the ranges for both have changed over the years since I was diagnosed in 2009. I don't think any of the Professionals can actually agree what they should be. T4 used to be 18 and then was put up to 22 depending what area you live in for the Lab ranges. I have been in hospital four times now since July with heart episodes. I am also worried as my B12 injections are also Accord brand too
At this point, could you urgently ask to be referred to an Endocrinologist? In the meantime, Medichecks Thyroid Check Ultravit Blood Test normally costs £99, but there is a special 20% Off Halloween offer. This blood test includes 9 biomarkers, a doctor's report is included, but importantly it tests for FT3 to see how well you're converting thyroxine, FT4 to biologically active FT3, as well as TSH. This test further reports on inflammation, iron status, vitamins B12-active and vitamin D, Thyroglobulin antibodies and Thyroid Peroxidase antibodies. You can organise a nurse visit to your home, at extra cost, or the finger-prick sample, the patient does themselves, is free. You can order tests on-line. I hope this is helpful. I'm having this test next week to compare results with NHS tests a week later. Good luck with researching alternative Levothyroxine brands, I'll be watching out for your next posts. Hope you feel better soon.
I don't think my GP will refer me to an Endocrinologist as I am under so many specialists at the moment. I have another appointment with the Haematologist in January and seemed to get more from him at my last appointment. He wrote on my report I had Pernicious Anaemia for my GP, as my GP wouldn't acknowledge it from 8 years ago. I have an ongoing complaint about my GP which has been escalated to the Directors and I am looking into changing Doctor's. I also have a full copy of my medical records. I will look into the blood tests but currently they are saying I need my thyroid re checked in a month, so I will ask about the Iron Profile too
Rocky & sy 28, there are now shown to be associations between over range FT4 and heart issues , I think only Atrial Fibrilation is mentioned , so i don't know if this relates to you or not. see link below;
I currently have very over range T4, but fortunately no experience of heart probs , but it does worry me a bit , and gives me more reason to want get my T4 and T3 more balanced .
I am currently waiting for a 24 hour heart monitor and an echocardiogram and have an appointment on 23rd November. I have had to wait 8 weeks due to the hospital Covid situation and waiting times. I have had 4 heart episodes in the last 3 months. I have also had Pernicious Anaemia neurological symptoms and have just been put on 4 weekly b12 injections. It's really difficult to tell what is causing what at the moment!!
That all sounds pretty frightening, and not easy to cope with even without covid making everything take longer. I hope the B12 injections help , sending best wishes , and hoping all calms down for you soon.
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