I have been having heart palpitations, night sweats, hotter than usual sometimes in day, dizziness, sometimes breathless going up stairs and my heart rate is much higher when I go running. Dr has reduced Levo to 75.
Any advise please?
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Was blood test done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
day before test did you split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/4 tablet 8-12 hours before test
When were vitamin D, folate, ferritin and B12 last tested
Yes I have Hashimotos got diagnosed with that in 2008 and started Levothyroxine then and always been on 100 until October this year.I take the T3 in morning with Levo in one single dose.
Vit tests in July were
D 76 - 50-175 so I’ve upped from 4000iu to 8000iu
B12 1046 - 145-569 had had B12 injections so backed off for few months and just started again every 6 weeks
Folate 7.93 - 8.83-60.0 so taking 1000mg Methylfolate
Ferritin 88.4 13-150
Magnesium 0.94 0.7-1.0
Also take zinc 25mg, DHEA 25mg and selenium 200
Brands have quite possibly been different over the years.
So you have high antibodies this is known by medics here in UK as autoimmune thyroid disease.
Technically it’s Hashimoto's (with goitre) or Ord’s thyroiditis (no goitre).
Both variants are autoimmune and more commonly just called Hashimoto’s
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 with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct 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
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Thank you for your reply. I will definitely look at gluten free. It’s all so confusing as GPs don’t really advise much I’ve had to figure so much out for myself and then who knows if I get it right
Are you being prescribed T3 by your GP in the UK? If so you are very fortunate. My GP in Wales said it was an illegal drug and he couldn't prescribe it to me. Fortunately I knew he didn't know his head from his elbow as far as Hypothyroid is concerned!
There was no need to reduce your Levo, your FT4 was only 48% through range on Levo only and reducing Levo dose has meant your FT4 has now plummetted to bottom of range.
In fact, with these results
TSH 1.59 - 0.27-4.20
Free T4 16.8 - 12.-22.0
Free T3 4.59 - 3.1-6.8
I wouldn't have started T3, I would have increased Levo to get your TSH down to below 1, see what your FT4 was then before making the decision to add T3
Your current results show FT4 too low and FT3 very high in range. If those were my results I would reduce T3 and increase Levo. Finding the right balance of each hormone to reach your sweet spot is a long journey involving gradual small increases.
That’s very interesting. Would too much T3 cause all these symptoms - racing heart, high heart rate when running compared to few months ago plus feeling exhausted and sweaty
I can't really say but your balance probably isn't right. Some people are OK with a low FT4 as long as FT3 is in the upper part of it's range but some need them better balanced.
I had an odd type of thyroid disorder that is rather like graves at first then slowly declines into hypothyroidism it has different antibody patterns to Hashimotos. I had a lot of symptoms that were more like overactive thyroid - itchy shins, heart pains, hyperactivity, anxiety and I was very thin and had no signs of a goitre, ever. But I also had classic hypothyroid symptoms feeling cold, low blood pressure, severe depression slowness of mind and body. They might alternate or could be concurrent. At the end I had a rapid and serious phase of overactivity followed by sudden and eternal hypothyroidism. Blood tests confirmed this. Symptoms were hideous like a crazy rollercoaster of horror abs suffering. My thyroid had conked out luckily I got treatment just in the nick of time. My heart pains were worse of all on Levothyroxine when I was under medicated and had very low levels of T3. They have greatly improved on NDT. I very rarely get any heart pains now. My T3 levels never recovered on Levothyroxine and always felt unwell on it. I feel fine on NDT but when I went a little bit over I had anxiety sweating etc so I cut back and felt ok again which is why I thought it could be too much T3 and your T3 is on the edge of above range but the T4 is low, so you probably don’t need that extra T3, the Levothyroxine might be enough for you if it is at the right dose. My relatives all do well on Levothyroxine but I have the DIO2 gene poor conversion polymorphism and some thyroid hormone resistance so maybe that is why my conversion of T4 to T3 is so rubbish. I guess my thyroid made lots of T3 to compensate when I was well - but that must have been a very long time ago! You will be a lucky one if you can sort things out just on levo 😉
Thank you for your reply. Makes me wonder if I ever needed T3 in first place. As it’s since doing that I have not been able to exercise in my normal way and the heart racing and high heart rate started.
Obviously GP is just looking at low TSH and has reduced levothyroxine
Many people on JUST levothyroxine need Levothyroxine high enough to get Ft4 at least 60-70% through range, in order to get Ft3 at least 50-60% through range
Suggest you explain to GP you were taking T3, but it’s not helping so going to try reducing T3 and can you have an increase in levothyroxine
They probably won’t agree to increase…..
If dose levothyroxine by weight helps with your request, use it
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
The problem with self medicating T3 is that taking almost any dose of T3 will suppress TSH, even if under medicated. Then invariably GP want to reduce levothyroxine dose inappropriately
Makes me wonder if I ever needed T3 in first place.
So how come you started taking T3? Sounds like they're not prescription T3 or they be 20mcg tablets, so were they suggested by a doctor or other practioner or did you decide to self supplement?
As I said before, with these results on 100mcg Levo:
TSH 1.59 - 0.27-4.20
Free T4 16.8 - 12.-22.0
Free T3 4.59 - 3.1-6.8
there was no indication that you needed T3, it was an increase in Levo that you needed. Those FT4 and FT3 results showed good conversion with FT4 at 48% through range and FT3 at 40.27% through range. No need for T3 at all but I would have checked to see if key nutrients were optimal which is important for thyroid hormone to work properly.
A practioner said to so I did. Can I stop taking them ? I’m on 75 Levo now since TSH went to 0.02 and I’m taking all my vitamins religiously to get them optimal and bloods are being done again in January.
Maybe reduce gradually, 1/4 of a tablet at a time rather than stop them dead. Half life of T3 is 24 hours so I'd probably reduce by 1/4 and give it a week, see what happens and how you feel. If you get as far as stopping them altogether I'd retest a few weeks later (say about 6 weeks to give levels time to settle) and you may need to increase Levo by then.
I'm not medically qualified, these are just my thoughts and what I would do in your situation.
Thank you for replying. It makes total sense what you are saying to be honest. In theory by reducing T3 my TSH will change too and I’ll need more thyroxine. I’ve got 100’s here as that’s what I was on for years.
Adding T3 has suppressed my TSH hasn’t it ? So will that mean I don’t have an accurate TSH reading now hence why it came out as 0.02 on latest bloods ?
I’m about to drop down to 100mcg levothyroxine from an increase 125mcg as I’m going to start on Liothyronine 10mcg.
My TSH was always high (above 2) on 100mcg levothyroxine the 25mcg increase bought down my TSH to lowest it could go on levothyroxine but sent FT4 out of kilter but no move in my FT3.
So clearly I’m not converting T3 well.
My Endocrinologist has warned me I could get palpitations, arrhythmia going on Liothyronine as well as weight loss and anxiety like symptoms, as it’s a stimulant, so all you describe is possibly too much Liothyronine, and think your results look more a FT3 problem, saying that the balance of levothyroxine might help, will add I’m not medically trained it’s just an observation.
My endocrinologist wouldn’t of put me on Liothyronine for your FT3 results as they look ok and just upped the levothyroxine to see if that could achieve a better balance that way, as he’s done with me.
My endocrinologist has said one single dose if Liothyronine in the morning, but I’m going to split it in to two, at least until I see how I go on it to avoid the shock to my system.
I’ve seen mentioned that it’s a quick to work drug, so adding slowly especially if getting a reaction, to see if it helps.
Only other considerations are, do you always in the same brand of medication you might find a particular brand better than the next.
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