My endocrinologist has referred me to Addenbrooks and I am belng seen in 2 weeks.
I have been referred for ? Thyroid resistance
What will they add and indeed do what my endo hasn't. I have a tsh around 8 on 75mcg daily although I struggle with palpitations on any dose increase, normal t4
Without thyroxine my TSH is 27 t4 low end of normal and hardly changes with medication
Very high 600 tpo antibodies
Early menopause started with hypothyroidism on low dose patches, helped initially then stopped working......... story of the whole process
45, Slim, anxious, palpations dry eyes, insomnia and foggy mind sums me up well. Was absolutely fine before this nightmare began a couple of years ago and made absolutely no progress
Any advice welcome and appreciated
Thank you
Written by
richard123
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The genetic form of resistance to thyroid hormone (RTH) presents with high fT4 and a non-suppressed TSH without signs of hyperthyroidism. You do not fall within this category and so almost certainly don't have genetic RTH (caused by mutations of the TRB gene). This is the area Addenbrookes investigates.
You have too much history on the forum for me to read but going from the comments above it looks like you have primary hypothyroidism. I surspect many patients have a form of RTH caused by endocrine disrupting chemicals (EDCs) which tend not to affect the pituitary (and so do not affect blood tests). Addenbrookes seems to have no knowledge of this and no inclination to consider it. Sorry for the bad news. I think the best you can do is explain your symptoms and point out your responses to levothyroxine treatment.
What’s the highest dose of levothyroxine you’ve been able to tolerate? You’ve said in previous posts that you’ve not been able to raise your dose above a certain point - what was that point, and what happened when you tried?
Thank you, I get palpitations, tachycardia and end up in A&E and they say reduce thyroxine dispite raised tsh as I appear hyperthyroid.... resting hr goes to 130 and I feel unwell been regularly on 75 now for few months and feel rough.
When I first saw endo she said I appeared thyrotoxic nothing much has changed since then
But palpitations and tachycardia can also be a sign of undermedication. But tragically few doctors seem to understand that. What are your iron levels like? It seems to be tricky for some to tolerate higher amounts of levothyroxine when their iron levels are low.
Agree with that. I’ve got Graves and whenever I needed my levo increased during my block and replace I got hyper symptoms. First time I thought I was becoming hyper again but someone on here told me exactly what Jazzw has said and it was correct.
Levo was increased at next endo visit and hyper symptoms disappeared. Next time it happened I explained to my GP and persuaded her to give me an increase
Just a suggestion as can't answer your problem but what are your vits and minerals like? I read that some people can't raise T3 if other things aren't in a good place so wondered if that could also be the case forcyou with levo? In any case it won't do you any harm to look into it. The usual suggestion is to test Vit D, B12, folate and ferritin. These help your thyroid to work better if they are optimal and not just in range. (SeasideSusie is the expert at that). Getting those optimal can also help conversion problems, can improve some symptoms and also improves general health. So it might turn up something that is out of kilter and won't do you any harm.
I was at Addenbrooks for 3-4 yrs back and forth with blood tests ..... the Endo though an expert in his profession didn’t have much experience with Armour. Though it’s for Hypo he couldn’t help me more with my meds and dropped me like a ton of bricks when they wouldn’t prescribe me it any more even though I was paying for it myself.
I hope they find out what’s behind your issue as he knows more about hyper and the meds than it seems for any other medication than Levo!!!! The test are quite thorough so good luck
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 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 and slowly lower TPO antibodies
75mcg dose is obviously not high enough. Getting vitamins optimal and possibly/probably strictly gluten free diet as well, will likely enable you to tolerate higher dose
You may have DIO2 gene variation and need T3 added to Levothyroxine
Extremely unlikely Addenbrooks will do DNA test. Only one hospital in Kent will do this on NHS. Lots on here have paid to test privately.
Next time you have palps maybe take electrolyte soluble tablets that runners use. Make sure they contain some Vit C, B6 and Magnesium (there is a popular brand that make these available in Halfords). Slow Dragon's advice is spot on with blood tests you need. Also try not to hyperventilate, there are some useful guides online to avoid these panic attack symptoms. My guess is that you have cortisol issues due to poor conversion of T4.
I have heard they are complete luddites and will not even see anyone who self medicates and they are supposed to be T4 monotherapy obsessives with its all in the mind rubbish if you still feel unwell. Mind you why you are only on 75mcg Levothyroxine when your TSH is far too high at 8 is beyond me. They should be getting it down to 0.2 - 0.5 you might be ok if they aim for that and Levothyroxine suits you. You definitely need an increase in medication. I hope you find them better than what the rumours maintain.
Luddites hmmm I could think of a better description but wouldn't be very ladylike. Unless you have something like Cushings, they are absolutely useless with thyroid and parathyroid. My antibodies were off their scale over 1300 but don't consider that serious. I'm hypo but within the normal range (most hated expression for thyroid and parathyroid patients). My endo has left addenbrookes not even been told results of 4d scan done mid September.
Good luck with your appointment it maybe that you will get somewhere being male.
Some of us also need addition of small dose of T3 as well
As others have said hypothyroid symptoms can be extremely similar to hyperthyroid. Rapid heart beat is not exclusively hyperthyroid
Not uncommon to need to increase dose incredibly slowly. Going up from 75mcg to 100mcg just 2 days per week for 6-8 weeks. Then increase to 4 days per week. Etc
Always stick to same brand of Levothyroxine. Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
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