A bit lost and looking for help

[Pippydoo]

Hello everyone, I am not new here but have not posted before. Firstly, thanks for this great resource I dip in and out all the time.

A little background, roughly 6 years ago diagnosed borderline hypo, been taking 50 levo since then with blood test indicating no increase needed. Roll on to last Spring when my heart became unstable and I was rushed into hospital many times with tachycardia/bradycardia.

Finally fitted a pacemaker for sick sinus syndrome. Complained to dr about exhaustion and instructed to increase levo to 75. This sent me into a Tachycardia attack and I was rushed into hospital yet again where dr said to reduce the dose immediatley.

Determined to help myself somehow so gave up gluten which has made a difference and I have lost over a stone in a couple of months without doing anything else.

Need to help myself more now as Dr's really don't want to know, can't get appt, I am nursing my husband through end-of-life care at home, I can't be ill. Wondering if any of you have had good results with homeopathy or any other alternatives. Many thanks, x

[shaws Administrator]

First of all I am very sorry that your husband is very unwell and near the end of his life. It is a very difficult and stressful time and I hope some family members are able to support both of you at present.

50mcg of levothyroxine is a starting dose and we should have increases every six weeks until TH is 1 or lower. Many GPs think that 'somewhere' in the upper range is o.k. Many don't seem to be knowledgeable in treating patients other than giving them a prescription. They seem to be very untrained in dealing with a hypothyroid patient.

I wonder if you have a sensitivity to levo (T4)? When I was first diagnosed I was forever in and out of the A&E with a fast heartbeat.

Eventually the cardiologist was puzzled by my middle-of-the-night palpitations and was considering putting an implant in my heart to 'see what was going on'.

Just then some T3 (liothyronine) was added to T4 and it calmed my heart immediately. I never needed an implant. I take T3 alone now and at a lower dose than previously

I would request a trial of some T3 but many GPs wont do so. It has been stated that only Endos can prescribe but I'd try your GP first.

I must also state I'm not medically qualified but had to diagnose myself one hour after GP told me there was nothing wrong with me. He failed to notice the TSH of 100.

[Pippydoo in reply to shaws]

Thanks for the reply. I don't know if I have sensitivity to T4 but I have never liked being on it because it made me slower than I already was prior to taking it. I take it at night to avoid some of the effects. Our Drs have never given any help whatsoever, they just leave you to get on with it. I had no choice re pacemaker, it was put in as an emergency when my heart was pausing for long periods. Without it, I would have died they tell me.

I have never seen an endo or cardiologist all the way through this trauma.

I can just see my doctor's face should I start to enquire about T3 but will give it a go.

My doctors have not been happy with me since my blood test proved to them, at one point I was overmedicated on the 50 dose, then after full apology, they left me to it.

My family is very supportive to us both and we always have someone to call on should we need anything at all. We count our blessings x

[fibrolinda]

Have you got your test results? Tsh, Free t4 and Free t3? Antibodies? Vitamin b12, ferritin, folate and vitamin d too? You can get these done privately via thyroid UK recommended labs, well worth it to see exactly what is going on. Always concerned when I see you were told no increase needed... Always ask reception for results, including ranges. Doctors often say fine if anywhere in range.

[Pippydoo in reply to fibrolinda]

Thank you, I will get the test done as soon as I can and post it when I have them.

[humanbean]

Based on my personal experience of tachycardia and thyroid hormones, low iron will often increase the risk of tachycardia. When I found that I could test and treat my own extremely low iron without seeing a doctor I went for it, and gradually my episodes of tachycardia reduced. I also have a prescription for beta blockers (Bisoprolol in my case, but there are several different ones available) which I take when I think they are necessary - when my heart is going uncomfortably fast.

bnf.nice.org.uk/treatment-s...

Ask your doctor for a full iron panel. If you can't get them to do anything other than ferritin (iron stores), then you can get a full iron panel done with a finger-prick test :

medichecks.com/iron-tests/i...

For a 10% off discount code :

thyroiduk.org/help-and-supp...

One other thing I have discovered that affects me... I used to take my thyroid hormones in the morning as soon as I woke up. I switched to taking them just before I go to bed and I've had far fewer episodes of tachycardia ever since.

[Pippydoo in reply to humanbean]

I have lived with low iron levels all my life after being born with a rare type of anemia that cannot be treated with iron.

I do take the thyroid med at night just before bed 3/4 hours after evening meal, I do find it better and it was a tip I picked up on here.

While I was in the hospital they told me not to take it at night as it wouldn't work. I just nodded and carried on doing what suits me. Tachy seems to be better since stopping gluten.

I also have script for beta-blocker but only use it as and when needed, I get dreadful side effects that too. Thanks so much for your input.

[humanbean in reply to Pippydoo]

Okay, I just read your profile, and saw the reference to beta-thalassemia.

What happens with your condition if you take iron?

[Pippydoo in reply to humanbean]

Iron wouldn't be effective and would be deposited and stored in major organs resulting in iron overload which can be fatal.