My GP conned me into a trial of comming off levo due to heart palpitations and anxiety. She said they couldn't find no other reason for it so we should look at the thyroid medication. So I reluctantly agreed to it and now 14 weeks later I'm in a bad way. The heart problems have got worse, I'm living on adrenaline. All my old hypo symptoms are back and my legs and feet are swollen. I have phoned and complained quite a few times over the past 3 months but was told to suck it up because my body would have to adjust before they would consider anything.
Last week I was in a real bad way so I phoned 111 they listened but weren't interested as they didn't consider it life threatening. Through them I got to speak to a GP she asked me to come see her at 3.30pm. she examined me and did some bloods. I did mention at now 4pm in the afternoon she was wasting her time.
The bloods were all normal she announced so she says obviously nothing wrong with my thyroid TSH was 2.7 (0.35-5.3) T4 12 (9-20) she didn't bother with T3. This was at 4pm. I feel half dead but they don't care. Everytime I've ended up in A&E they shook their heads and said "you're on too much thyroxine" I got angry and said I wasn't on enough because I was only on 50mcg levo as I had a TSH of 2.4(0.35-5.3) and T4 of 14.5 (9-20) private blood tests my average T3 was 4.4 (3.1-6.7) but they insist that palpitations and adrenaline along with my anxiety are symptoms of over medicated. So no prescription for levo. Do I self medicate? All they have done is throw me a prescription for propranolol!
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magsyh
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Propranolol will make you worse, it is used to treat hyperthyroidism as it blocks T4 to T3 conversion (type-1 deiodinase). If they feel a beta blocker is needed they should chose one that doesn't affect the thyroid.
TSH of 2.4(0.35-5.3) and T4 of 14.5 (9-20) with 50 mcg levothyroxine suggests under-medicated, especially with your symptoms.
I explained this to the cardiac nurse but got a blank stare she said again but why wouldn't you take them when they are recommended by the cardiologist? I explained again about thyroid problem so she says she is handing the problem back to my gp
When I took levothyroxine, it gave me terrible palpitations and some people can have a sensitivity to it, despite it being the only replacement prescribed.
My cardiologist was puzzled when he had the information from overnight recordings. He was thinking of putting an implant into my heart to 'see what was going on'. Fortunately, just at that time T3 was added to T4 and all palps ceased. I then went onto T3 only. I never consulted cardiologist again.
If our thyroid hormones are too low, our body cannot function properly. The aim is a TSH of 1 or lower and Free T4 and Free T3 to be towards the upper part of the ranges. Unfortunately the 'frees' are rarely tested.
I did try T3 last year. I felt good on 5mcg T3 plus 50mcg levo. I was still undermedicated but when I tried to raise T3 to 7.5 I got bad headaches and nausea so gave up on it
Palpitations and anxiety often due to being UNDER Medicated...obviously most likely having been left on only starter dose levothyroxine
Strongly recommend getting FULL Thyroid and vitamin testing done privately
Then see thyroid specialist endocrinologist
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
What vitamin supplements are you currently taking
Have you had thyroid antibodies tested
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% 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
Have you had ultrasound scan of thyroid?
20% of Hashimoto's patients never have raised antibodies
I am having a private blood test done next Tuesday. I had full test done in march and all vitamins etc in a very good place so not worried about that. I have my antibodies tested every year and always negative. The only other thing despite taking b bits I have all the signs of b1 deficiency. I'm considering getting an OAT test to check what's going on.
What dose of Levo were you on before it was removed?
A couple of common causes of tachycardia in people with hypothyroidism are low iron and/or low ferritin (iron stores). Low vitamin B12 and/or low folate can also cause the heart to go too fast.
Have you had nutrient levels tested in recent months? If not, it would be worth asking for them to be tested.
I was on 50mcg. My ferritin was 145 active b12 113 and folate was over half way at 13. I'm considering an OAT test. D was 81 this was back in march. I have been as high as 88mcg but heart rate always went too high and they reduced me back to 50. Each time they put me back to 50 I gained half a stone. I'm now 2 stone heavier ☹️
Another cause of fast heart rate is high blood sugar. I get this if I go nuts on the biscuits or the ice cream. I'm not diabetic - my HbA1c was still within the "healthy" range about two weeks ago when I last had it tested, but I strongly suspect I am insulin resistant, and diabetes may well be a condition I have to deal with in future if I don't get my act together.
Low electrolytes can also disturb the heart rhythm. The list of electrolytes is quite long :
Although some electrolytes are rarely tested (in my experience which might not be true for others) some are tested quite often e.g. calcium, sodium and potassium, but the serum magnesium test is misleading and not reliable.
My palpitations are only during the night. They wake me up every 2 hours sometimes 135 BPM. Same happens when I open my eyes in the morning. Any ideas?
Are your palpitations every night? I seem to have palpitations some nights but mine coincide with evening alcohol or a high sugar/carb/fat evening meal
They are every night, always when I'm sleeping. I have tried sleeping during the day as I'm not getting much sleep and it's happening then too. I've even tried sleeping sitting up still happens. I'm waking every 90 mins to 2 hours. I'm just about round the twist!
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