Carrying on from my last post, which also had my last results, my palpitations are getting worse. Nighttime I wake up with them and feeling as though I’ve been startled awake, feel very rough, upset stomach, headache, all joints hurt and feel weak. The last week have had more incidents of tinnitus, joint pain and palpitations, feel weak, struggling to work or walk the dog.
I am going to have to phone the doctor today as it’s getting so bad, have dropped abit of Lio and upped my T4 but not any difference. I am worried that as my cholesterol is high ( last year at 8 ) they will insist I take a statin which I have always refused and/ or they will take away the lio. T3, after 2 years of fighting for it due to bad conversion since being back to Uk. Since taking it sleep a lot better not so anxious all the time and mood swings better.
I was always quite steady on my French T4 meds but for some reason that all changed here, with change of make of T4. I’m now on Mercery meds, as they said they couldn’t get my make from Germany.
I’m really worried now, had full heart checks scans etc before leaving France 3 1/2 years ago and all fine.
Any advice would be gratefully accepted
Info
No Thyroid, removed due to multiple cysts over 14 years ago
Being through menopause
Have low Vit D and Folate. Taking supplements for both along with Vit k
Have acid reflux take Gavicon when really bad and try regulating diet
Written by
Nellups
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As you have no thyroid gland at all, I think the correct prescription for you is T4/T3 combination. Or NDT (natural dessicated thyroid hormones - now withdrawn) if still having palpitations, a trial of T3 alone should be offered.
I, too, had this experience on T4 and had many heart checks but cardiologist couldn't figure out why this was happening. and was considering puting an implant into heart to 'see what was going on'.
When T3 was added to T4 the palps reduced. I then took T3 alone and it resolved my palps. I am not saying this would happen to everyone but we should be offered 'options' but now that T3 is so highly priced it was withdrawn from being prescribed unless an endocrinologist did so.
You have my sympathies.
You could also try taking one anti-histamine tablet 1 hour before taking dose and if you have no palpitations, ask for an another make of T4 for a trial.
Re your cholesterol level, it rises if we're hypothyroid and reduces when we're on a dose which is optimal. Doctors are apt to treat 'symptoms'as being unconected with hypo, which may well be due to how our body is reacting and give prescriptions for the symptom without considering that it is could be due to being on an insufficient dose or to replace levo. It is a shame that NDT (natural dessicated thyroid hormones) has also been withdrawn. It was, at one time, prescribed and being made from animals' glands more conducive to the human body.
Statins should not be prescribed if hypothyroid as it will resolve when on a dose of thyroid hormones that suit us.
I just don’t know what to do, I’m fighting keeping the T3 and not to have statins but the doctor also warned me about my too low TSH level and wrote the following letter to doctor and me
We do not need statins at all as the cholesterol level should adjust itself when we're on an optimum dose of thyroid hormones.
Do not trust doctors who interpret a low TSH is due to an overdose of levothyroxine!
A low TSH usually means the patient feels better - it does not mean we have taken too much (doctors might think so).
Realise that few doctors (even an endocrinologist) might have basic knowledge only about how to treat patients who're hypothyroid as the majority have been told that only levothyroxine should be prescribed. Many on this forum need either a T4/T3 combination or T3 alone.
I hope this link might be helpful and I take T3 only, so know exactly how you feel in case it is removed.
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)
If/when also on T3, make sure to take last third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I am so so sorry that you are going through palpitations. I had TT too and I was dosed on Synthroid sole that is T-4. I experienced terrible symptoms the most frightening of them all was the palpitations. I too went to a very nice cardiologist and ran many tests thankfully he said all was well and didn't know as to why I was having palpitations. I became very pro active since I was not getting help from the medical experts.
I read many books joind forums and prayed .
What worked for me for starters was switch T-4 brand since fillers can cause palpitations. Low Iron levels cause palpitations. Adding a small dose T-3 to my T-4 was another great game changer for me.
Most Dr's that add if one is lucky Some T-3 will lower T-4 dose. Big mistake in my experience. When that happened with me I felt even worse than before. I need a certain amount of T-4 for my T-3 conversions.
Please read as much as you can to get informed and to get impowered to be able to deal with Dr's. If they see your well informed they will treat you differently too. That was at least in my experience.
Meanwhile if your not already on magnesium please take some to calm your heart and some fish oil is helpful too.
Support your adrenals/cortisol with vitamin "C" B-complex Celtic sea salt.
Sending you healing hugs strength and prayers for a very fast resolution 🙏.
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