I haven't accessed this Forum since before Christmas; I wasn't in a good place mentally or physically. I was getting episodes of breathlessness, muscle fatigue, and a 'fluttery' heart rate at base of my throat and under my sternum. Early January I experienced an intense pain down the left side of my neck, into my left shoulder blade left a hot pain in my rib cage.
I felt that I was going around in circles, back and forth to my GP who set up numerous tests and an X-ray for me. All has come back 'normal' and I felt frustrated, as I presented well and fit at each of the tests; yet I'd experienced all these different symptoms at various times that could indicate different conditions.
Then over the Christmas week I had a couple of episodes where my heart-rate spiked and again on New Year's day - first time for 9 months - it all became too much. These spikes have been happening for years with long intervals in between and has only been witnessed once by a nurse. So I take a 'pill in the pocket' when needed.
My TSH result came back 1.37 range 0.05 - 5.00 so here I go again - - - - 7 weeks ago it was over 5 - then down to 1.37 - my question is how do I keep that level stable? I have considered all the advice on this forum together with my experience over time and am now doing the following:
I take levothyroxine well before (1 or 2 hours) my lactose free breakfast with caffeine free tea - I take Revaroxiban (blood thinner) with breakfast.
Iron, Vit B complex, Vit D & C + zinc at lunch (4 hours after levothyroxine)
Magnesium and Flaxseed oil before bedtime.
I drink lactose free milk later in the day and have reduced my normal tea intake in the afternoon. i.e. 2 cups instead of 4.
I've also requested Mercury Pharma levothyroxine (Eltroxin) instead of TEVA
So far so good. I have energy after my breakfast, sustaining daily walks, some longer than others. More productive than previously but not as productive as I can be. The 'pulses' at the base of my throat and under my sternum have gone and I appear to have more breath. Also, I feel more positive. Fingers crossed.
I do wonder whether the various and erratic symptoms that I've had during 2020 are in fact 'long covid' - I did have covid at the beginning of March. That's another story which I can expand on if asked.
Happy New Year, hoping all will be well for everyone.
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Dillongirl
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My TSH result came back 1.37 range 0.05 - 5.00 so here I go again - - - - 7 weeks ago it was over 5 - then down to 1.37 - my question is how do I keep that level stable?
Well, it's not really about the TSH, is it. TSH doesn't cause symptoms, whatever its level. Is that all your doctor tests?
Do you always have your blood draw at the same time of day? Because TSH is highest early morning, and drops throughout the day. So, to be able to compare levels, the blood draw always has to be done at the same time.
Thank you for your reply. I was diagnosed as hypothyroid 20 years ago. I joined this Forum to clarify certain issues and have taken on board all the advice about blood tests. My GP won't test for T3 or T4 or antibodies only TSH. She also won't refer me to an Endo. I did have a private test (results not to hand at the moment) All appeared well except TSH was high (so under medicated and increase from 75mg to 100 mg daily) and a suggestion that my Cortisol was high. My GP did organise a urine test for cortisol but that came back 'normal'.
I have a pacemaker but also have a tendency for high heart rate at times. Its the symptoms that involved my heart that I was most worried about. Looking for any link between heart and thyroid - yes I've read loads.
Recently, I wondered whether long covid exacerbated existing conditions - Frustrating to me is that almost every time I have a test I'm fit and well on that day. It took 16 years to find out that I needed a pacemaker! That came about because in 2015 I reduced my intake of thyroxin drastically as I was sure there was a link between thyroid, palpitations and thyroxin. I felt quite well for a while, my GP was annoyed but suggested I had a 7 day cuff - I had a bad week and the result was fast/slow heart rate, missed beats and erratic heart rate. A real mess hence pacemaker in 2016.
This year, I've been back and forth regarding a whole bunch of symptoms and when things calm down I may follow it all up privately. As I mentioned in my post I've observed and put into practice some advice I've received or seen given to others on this Forum. I've felt quite well for the last 10 days or so - now only time will tell. All the best.
My gp always tests at least the T4 alongside Tsh, I was experiencing tachycardia for nearly 2 years, 1st thing my doct did was full thyroid panel, too make sure I wasn't overmedicated.
Yes maybd you need to be thinking about a second opinion? ..always underlaying reasons as to why our bodies don't function correctly, or start to go wrongHate the words auto imune now 😒
Ha now i understand..I'm very much the same !! I have trigger asthma with lots of medication and foods, sprays iv banned and just use damp cloth to clean with now...
That's strange, as I had to diagnose myself the day after GP told me there was nothing wrong with me. He seemed to have missed a TSH of 100 - never mind all of the clinical symptoms I had.
Yes, because of a tendency to have an erratic heart beat I need to take a blood thinner. When my heart rate spikes I need to take Flecanide which slows the heart down. This doesn't happen constantly so a 'pill in the pocket' is taken when a spike happens. I don't need to take Flecanide everyday but carry it with me when needed. 👍
I'd read about it on this Forum. My last prescription was not TEVA so I requested Mercury Pharma this time but had to go to another pharmacist.
My usual one said they had to dispense what they had available as their buyers bought in whatever they could get for a good price. They couldn't request it specially. Although, previously the same pharmacist confirmed that the filler/binder in TEVA was an artificial sugar that some people reacted to. I did find another pharmacist that could - so I'll see how things go.
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Obviously you need more than just TSH tested
Essential to test TSH, Ft4 and Ft3
Monitor my health is cheapest option to do this and is run by NHS as private postal kit
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
Just to have the full picture, I’d do private testing of tsh, t4 and t3. As you’ll have read in here, some people convert t4 to t3 badly. That would be worth knowing and would give you some evidence to show you need to see an Endo. The full NICE guidelines are useful.
Many here say we’re well when our t3 is fairly high in the range. It does seem like you’re nearly there but would like to ensure you’re doing all you can to get better - I’d honestly start with getting tested properly.
I did have a private test before Christmas (November I think) T3 & T4 not a problem. I was advised by Slow Dragon that the heart needs plenty of T3. I'll file that for now and research further - the main concern from that test regarded cortisol. So, my GP picked up on that. Anyway, she organised the relevant test - again normal. Later she requested a whole raft of blood tests. 3 pages long and complicated - just too much for me over the Christmas time.
From those three pages I saw that my liver function was fine, kidneys chronic stage 3 (known about that for about 12 years) and TSH within range (1.37). I'll have another look but for now I just want to get on with other things - - - especially as I'm now feeling much better. I think part of this turn for the better is due to changing the levo brand and being strict about the timing of when I take levo, my blood thinner (Rivaroxaban) and supplements.
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