I have had a lot of changes to my meds recently. I am desperately holding out for a private blood test around the end of this month, after a period of returning to my ‘old’ prescription (100 mcg levo), which had stopped any real improvement in symptoms for about a year. It seemed clear T3 was required. However it’s not worked well for me and I am in a bit of a spin.
So, history: one attempt at increasing levo on local endo instructions (T4 went very high terrible Raynauds etc). One attempt at self medicating T3 (but rapid heart beats) and one attempt at T3 via private endo (but rapid heart beats) since last blood tests for private endo appointment, which were posted here end of October. Three and a bit months.
3 episodes in A&E due to rapid heartbeat- which continues periodically - desperately trying to keep a lid on it. Other episodes too which I have restrained myself and stayed home. Feeling traumatised by the visits to A&E - nothing apparently wrong! If I was not having panic attacks earlier, I am pretty sure they are contributing now!
I am being fitted with one of those holster things to attempt to see what is going on with heart but at the moment my date is two months away. A&E also advising GP to refer me to Endocrinology for advice. You might imagine how I feel about that. As if things are not in a big enough mess and likely to get some more superficial advice muddying already muddied waters.
I feel I need an update or support for my ‘wait and see’ strategy which is proving enormously difficult. I feel trapped. It’s either wait and see or terrorising myself trying something else. There is no ‘third way’.
In fact private endo seemed to think that neither T3 nor levo was going to work for me. That remains devastating. I am stuck here on a level of meds which are clearly not working (even worse than before) and I can’t take T3 or levo!! It’s a scary place.
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Sorry you are having so many symptoms still.I had a quick look at previous posts but couldn't find the answer to my question:
Have you tried splitting your levo dose?
I have always had to take my levo in 2 or 3 doses as I felt ill if I took more than 50mcg in one go. Splitting the dose makes the spike as the t4 peaks lower and is gentler on the body.
Since most of my rapid heart beat episodes are happening at night; the last two nights I have taken my dose in the evening. First night felt like an improvement. Not so much last night, hence my middle of the night post!
I am now feeling pretty ill nearly all day. Reminds me painfully of a time when a doctor asked me what was my worst symptom, (40 years ago) because he was at the end of his tether! I said I just feel really unwell. So he wrote ‘malaise’ on my sick note. I felt like an utter fraud and I was being outed by using this word that my employer would see. The shame.
Drs are taking it a bit more seriously but there is still that very strong thread of disinterest. I am becoming more fearful than positive at the moment.
Today I will try to take half my 100 mcg earlier in the day with the other half at bedtime and see if that helps. Thank you.
I hope that it does. I know what you mean about malaise. It is medic speak for what we get but I too had it on sick notes and felt it was a horrible description.My rapid heartbeats and palpitations eventually went after about 2 years of adding t3. I had to find the doses that suited me first and then things began to settle after that. 18months of being on those stable doses and things are still improving. On levo only my resting heart rate was always between 78 and 82, now it is 69.
My results on 100mcg levo only (taken as 2 x 50mcg) were TSH below range, ft4 60%, ft3 17%. Adding in only 7.5mcg t3 (taken in 2 doses) has resulted in TSH 0.001, ft4 50%, ft3 72%.
So only a small amount of t3 can make a big difference if you can tolerate it. If you do try again to add in t3. I would go low and slow and feel no need to rush any increases. Stick on 2.5mcg for as long as you want.
Yes it’s easy to look at other people’s results sometimes and think there is a definite calculation and if you are not fitting that calculation (I think) it’s even more difficult to get it right. That’s interesting even though your T4 was not that high, you were still able to take on the T3 with success. And I do understand the smallest changes can make a massive difference. Though how you handled the 2 years, God alone knows! My resting heart rate is low, about 60. I have noticed (now I am looking) that I get a spike in blood pressure just before increase in heart rate happens. By the time I get to hospital it’s only about 80, which gives them no worries. However it’s very noticeable to me since I have pulsatile tinnitus too. It’s just overwhelming when it happens. So blooming unpleasant. First job split my Levo. Thank you Lalatoot.
Don’t feel like a fraud your unwell and you need it to stop. I think we get overwhelmed when our bodies go crazy and can’t get things resolved can you imagine what a doctor must feel when we rattle off a list of issues… overwhelmed Im sure.
I know this isn’t helpful but Im someone who totally understands what its like going into the doctors office with a laundry list of issues…. Heck I just did that last week because I developed internal tremors and vision problems both of these issues cause me to stress out my body feels like Im forever sitting on a vibrating chair and can no longer drive or walk in the dark… My mother has had tremors for years and my older sister has them as well but my mom is so bad she can’t hold a cup of coffee … now me
it’s the weirdness of our symptoms as well as the number that seems to floor them. I keep thinking they should see that as a symptom of hypothyroidism in itself! If they catch themselves thinking “Oh No, heartsink patient approaching” they should just know it’s hypothyroidism. Never mind the blood tests, especially TSH. My major symptom is my heart and I am trying to stick with that. The rest of my ‘list’ is pure classic hypothyroid. Thanks for answering me with support. Much appreciated.
I really don’t think doctors think of thyroid disease as life altering or issue causing. Doctors also believe that thyroid disease is easily managed by drugs and blood test. We definitely know different … I have no solutions on how to change the medical fields view of Hypothyroidism.
Yes it’s just a job for them, I think. It’s well paid but as soon as they have completed their, admittedly arduous course, it seems to pall for many of them. Then it only gets worse I am sure, especially with the lousy role models they are getting now. E.g. Endos who publicly ridicule their thyroid patients.
I don’t really have anything helpful to say. But I am sorry you are feeling so fed up. I too am sensitive to medication. I didn’t feel much improvement on T4 so I have recently added T3. Only a tiny crumb (3mcg)gave me a racey feeling but that did pass after a couple of weeks. I hope you find a solution 🤞
I have been looking at DippyDame referencing supra physiological T3 doses. I think this is how desperate I am becoming because honestly it scares me witless. However it’s making more sense, when I think about how long I seem to have been ill. This is a repeat of my symptom picture of forty years ago. It was terrible then and it’s terrible now - being older! Now I imagine turned off receptors being turned back on and not in a good way! We really do need a sanatorium like space where this sort of thing can be tried with help and support on hand. Pie in the Sky. How brave people are taking this on without that kind of support! As I say if I won the Lottery this is what I would ‘invent’. The whole treatment of hypothyroidism is superficial and tacky.
It's an ebook which is available on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton
I highly recommend it.
Hugh H is a TUK member who has extensively researched RTH.
He quotes....
“Of all the problems that can affect physical or mental health, none is more common than thyroid gland disturbance. None is more readily and inexpensively corrected. And none is more often untreated, and even unsuspected.” Broda O. Barnes, M.D., and Lawrence Galton (1976)
I totally understand how you feel, I've been with this horrible condition for most of my life and as I told a GP recently, "no one will ever convince me that low cellular T3 is not the cause of my various problems!"
My GPs are very good and leave me to self medicate with T3 ( I had no other option left!!)....which is fine until the day comes when I might have to be in hospital or be in care. T3 will be out the window!!. Argh I'm aged 77!!
I've often discussed with my husband how I'd love to set up a foundation to study thyroid disease....pigs might fly!!
Robert Burns wrote...
O wad some Power the giftie gie us
To see oursels as ithers see us!
It wad frae mony a blunder free us,
An' foolish notion:
I often think this could be directed at the medics who fail to see/ understand the trail of devastation they leave behind them, because of their inward looking "foolish notion(s)".
T3 treatment has been described as the last resort. Maybe, but It is essential for life and should be available to any patient who requires it to have a good quality of life
Perhaps it's the levo that is your problem!
The heart needs a lot of T3 to function properly
"They" don't understand T3....it scares them and that leaves their patients in abject suffering.
My possibly unhelpful answer is that there is 'something else' that is preventing your body tolerating T3. Until that is fixed, you won't be able to tolerate it. Now, the question is, what is the 'something else'? I had a browse of Paul Robinson's blogs and found this:
When patients try to raise T3 levels in the presence of low cortisol, they may find that the body compensates for low cortisol by producing more adrenaline. This can cause anxiety, rapid heart rate, the feeling of heart palpitations etc. This is usually the adrenaline response rather than a direct issue with the T3. Very often, it is the low cortisol that is at the root.
So perhaps cortisol levels need to be checked? Have you ever done a 24 hr saliva cortisol test?
Titaniumfox this is another area of difficulty I have avoided. Praying for a simple solution first and foremost. I heard Paul Robinson on a podcast or YouTube thingy and remember thinking, I hope my case is not going to be as complicated as that! I am having a problem with so much info right now but I know that this is something I must confront. If nothing else it will give me something to keep me occupied. Thank you for highlighting this to me. Not at all ‘unhelpful’.
I really do feel for you and wish I had the answer as I absolutely understand your being fearful. However, your one private endo didn't really sound that helpful if she has left you feeling that there is nowhere to turn as I'm sure there must be others who have had heart problems as well as being hypo. I do remember reading years ago a book by Broda Barnes called "Hypothyroidism the Unsuspected Illness" which I think devoted a chapter to people having heart problems whom he immediately put on to NDT. I think another book was mentioned on this forum by him about the heart and hypothyroidism but I've not been able to find it but I'm sure someone will know about it and can send you a link. Have you looked at doing a saliva cortisol test as I would imagine all the stress you are undergoing will be having an effect upon your adrenals. Sending you a big fat hug😘
Today I keep answering people by answering myself and have to rewrite. I have tracked down a copy of the Broda Barnes book so hopefully will have that soon. I agree about the endo, just trying to come to terms with that. Definitely looking at saliva testing. Thank you!
Medics will no doubt try to tell you that both TSH and FT4 are fine....so you must be fine. Rubbish!!
T3 will need to be introduced in tiny amounts and very slowly so that your heart/tissues/ system has time to adjust otherwise it may react like putting high octane racing fuel in an old Mini!!
It's a long,... slow (boring!) journey but there is light at the end of tunnel!
This is excellent info. I suspect heart failure. High systolic/low dystolic. Microvascular or vasospastic angina I have had for about 25 years. It was called coronary spasm at the time of diagnosis. Levo took away the angina pain of 25 years standing - I was chuffed but as I can hardly get about for hip pain and all over muscle weakness, mostly; this was my reason for further pursuit of medication. The medics are presently looking for Fibrillation. Heart attack twenty years ago! So three out of four. I might have all four conditions brought about by low T3. I can see this is probably my life from now on, trying to adjust the meds to suit. Why have these medics all been so ignorant (and continue to be) for so long. I have seen some of this reported elsewhere. It’s ‘good?’ to see it all in one place!!! The tiny doses of T3 are most likely the necessary (even although I thought the doses were tiny already). Sweeping in with high doses scares the Sh1t out of me. Even going back to tiny doses scares me. Girding of loins I am not ready for as yet! My system I am sure, “is reacting to the high octane fuel in an old Mini”. You are quite right! Thank you DippyDame.
So have you tried using the CPAP again or called the sleep clinic? We discussed that silent reflux can cause intolerance of CPAP therapy so perhaps worth trying raising the head of the bed, perhaps taking apple cider vinegar or if necessary some kind of indegestion remedy.
Honestly its highly likely you have this rapid heart beat during sleep anyway. If I look back on my fitbit data its like I am running a marathon in my sleep. All part of the diagnosis we discussed Periodic Limb Movement Disorder. It doesn't wake me up because I use my CPAP. If you are having apnoeas during sleep AND your heart rate is wild anyway then of course when you wake up your heart is racing.
All of this is nothing to do with Levo or T3 although low levels of either is going to be making everything worse. Changing levels by increasing in either will change your symptoms for a short time but overall in time will improve them.
You need to address the several sleep issues you have which will be making the rapid heartbeat far worse than it needs to be.
Sleep Clinic due 08/03/23. I think I might be getting anxiety issues after all. Chicken or egg. Have you any idea whether this halter thing for cardiac stuff may also pick up the stuff the test for sleep apnoea? However I will be able to ask this question on Wednesday at the Sleep Clinic. Everything gone to the dogs i.e. have lost the plot somewhere. Glad I noted all the test dates and results etc but could have done better with symptom records. Totally focused on heart stuff, refusal of endo and dare I say gaslighting of - that I could not use T3 and probably Levo too. I felt like I had been punched. It’s shocking asking for help from medics and politely getting knocked back in such a brusque manner. Also had a traumatic visit to A&E the other day - another story. Thanks for the reminder about Wednesday - I will prepare.
Right now, with the sleep issues you clearly have that are not treated or understood by your medics or even yourself, you are not getting refreshing sleep. That in itself can cause psychological issues, sleep deprivation has and is used as a form of torture even. It messes with your head. That coupled with low T3 is going to potentially cause a lot of mental health issues. Talking to an Endo or A&E about this kind of issue is not going to bring the right response as it is not their speciality. You need to be talking to the right people, a sleep clinic. They are your option 3. A&E have made the wrong referral and sleep clinic would have been correct.
Who will be looking at the holter monitor test results? It will pick up overnight tachycardia which for sure will be being exacerbated by sleep apnoeas. It won't show apnoeas, an overnight oxygen monitor would pick up those better. It might be that you need a separate referral to the sleep clinic for the PLMD. My OSA, PLMD and Delayed Sleep Phase Disorder all get separate appointments at the same sleep clinic and have been diagnosed at different times by the same sleep clinic.
I have to say some sleep clinics are better than others. Some are only small and mainly deal with OSA. I'm now at a very large regional centre that has many sleep technicians, several consultants and a suite of room for overnight studies. It's much better and has a greater understanding of complex sleep issues.
Make a list of the sleep issues you are facing to take and show the doctor on 8/3.
Feel free to private message me to ask anything about any of this, how to get used to CPAP, understanding PLMD, anything.
Once you get on top of these conditions and understand them better yourself you will feel a lot better and be able to tackle the dietary stuff more easily and tolerate T3 which you clearly need.
Take your CPAP to your appointment so they can make any adjustments and help aclimatise you to it.
OK. Thanks for the heads up on the questions I should be asking. Otherwise I would have gone into this nigh on blind, deaf and dumb. Thank goodness I have a few days to prepare.
I could be stating the obvious and you may have heard this a tonne of times but have you looked into your cortisol levels?
When I go off my adrenal cortex my heart palpitations and anxiety are awful. I felt utterly suicidal and had a depression that felt all consuming. It got to the point where I thought I was about to descend into madness. I simply cannot tolerate NDT without taking 600mg cortex. I am sure you know all this already but I just can’t state the importance of correct cortisol levels in treatment and how many are kept ill due to a lack of it. If you haven’t already - read Dr Peatfields book ☺️
No Beau55 I have heard it/been told it but I have not done anything about it! You are right to put in your two penny worth because I need this stuff highlighted for me. Cortex 600mg. I will try to find out what that is. Honestly I just kept hoping for simple. It’s anything but. Thank you for your post!
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