I really need some advice as I'm just about at screaming point. I'm feeling absolutely terrible and the GP practice are just not giving a damn. This carry on has been dragging on for almost 8 months and they are still humming and hawing if they will give me my levo back.
Back in January they told me to wean myself off as I had so many episodes of ending up in an ambulance with high heart rate through the night. I'm ok during the day but my heart rate goes way up at night, I have very bad dreams and I wake up with my heart pounding. This happens several times a night but when I wake up in the morning my heart rate returns to normal. They took me off my levo and instead of getting better the problem got worse. I've had lots of blood tests both NHS and private and my TSH just keeps rising. Last week it is now 5.99. my T4 is sitting at 20% in range. They think that's fine. I finally convinced them to check my cortisol it came back at 345. Which is below range so they have written to an Endo because they don't know what to do because my cortisol is low. They keep messing me about I never speak to the same doc it's just whoever is there. I feel like I have been trampled by a heard of elephants in the morning and all I want to do is sleep during the day.
They are trying to tell me I have sleep apnoea because of all my symptoms. I don't believe them, I just feel they are looking for any excuse not to give me my thyroid medication back. I told them sleep apnoea was just another symptom of hypothyroidism but they turned it all round and said sleep apnoea causes hypothyroidism. I have about 5 months supply of levo in the house and I'm so tempted to start taking it but if I did I wouldn't get a prescription from the NHS and I'm worried about taking it if my morning cortisol is so low.? I feel that 8 months of this is long enough my health is suffering badly I have never felt so rough but they just don't care, they expect me to keep waiting till they decide if I get my levo back or not. I have asked a few of them but they won't commit themselves some of them say no my levels are within range but TSH has been over for past 7 months T4 is 20% and last time I had T3 it was about 40%. Should I start taking my old levo to stop me getting any worse or wait another few months by the time I have to wait to get more tests and speak to yet another doc?
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magsyh
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My latest results were TSH 5.99 (0.4-5.3) T4 14 (12-22)D3 119(50-175) active b12 88 ferritin 147 zinc 21.6 Magnesium O.96 Folate was low at 7.8 because I had stopped my vitamin b 3 weeks before last week's test because they couldn't get any blood out of me and I had to wait 2 weeks for next morning appointment. My TSH has been creeping up since march.
I am taking vitamin b complex, vit a, selenium, 1000mg ester c, b5,
I had over 50 blood tests done to check as much as possible and only thyroid showed a problem. NHS did the cortisol test and it came back below range
Have you considered buying your own thyroid hormones? I have found that it is the only way I can get anywhere in terms of thyroid because I don't have to ask permission from doctors to experiment.
I don't see eye-to-eye with doctors very often, particularly if the problem I have is invisible. So I can sympathise and empathise with you.
They are trying to tell me I have sleep apnoea because of all my symptoms
Have they given you tests for sleep apnoea? (I don't know how it is tested.) Have they given you a CPAP machine to treat it? It sounds to me like they are just making stuff up, so they need to actually prove the "sleep apnoea theory" to you.
I think some of the Fitbit type gadgets might be helpful in proving whether you do or don't have sleep apnoea, but I haven't got one, and don't know which ones might be helpful.
I have ordered a load of levo waiting for delivery. I got a sleep apnoea test and it was absolute rubbish. I got a letter saying I may have signs of sleep apnoea and as soon as I challenged their diagnosis I suddenly became a severe case that stopped breathing 49 times an hour! I wear a Fitbit and according to that I sleep normally and get good amounts of deep and REM sleep. The only thing that is obvious is that my heart rate starts rising in the evening gets higher when I'm sleeping and by about 5am it slows down. My most relaxed time is between 5am and lunchtime. I usually sleep till about 8.30am. I have just purchased an oxygen and heart monitor for wearing over night so I hope it hurries up. They sent me a CPAP but I have never opened the parcel.
Is it worth trying the cpap for week and see if it helps. If it doesn’t change Fitbit readings at least you can go back and say I’ve tried your way it’s not made a difference so now please as we have ruled out sleep apnea something needs doing. Sometimes we have to jump through their hoops, I know I did for nearly a year. Good luck.
Preserve us from doctors who are clueless about thyroid disease.
FT3 is the most important thyroid hormone reading. T3 is the active t/hormone and for good health must be available to every cell in the body in an adequate and constant supply.
You don't give us your lab results plus reference ranges but you do say "T3 was about 40%"...it should be approaching 75%, so low!
FT4 at 20% through the ref range is not "fine"....what do they teach students in med school! Again it should be approaching 75%
Labs being in range isn't your aim, you need to aim for an optimal dose that makes you feel well. We are all different with different needs, medics seem to forget this.
You need to have TSH, FT4, FT3, folate, ferritin, vit D, vit B12,and thyroid antibodies tested at the same time...as SlowDragon advises. It would be helpful if we had these labs.
Have you had thyroid antibodies tested for thyroid auto immune disease/ Hashimoto's? It causes thyroid levels to fluctuate.
Being undermedicated can cause horrible fatigue....been there!
Like humanbean I self medicate, medics had no idea what was wrong with me....I found the answer here, where the real thyroid experts are.
Sometimes we just need to take control when those who are supposed to help fail to do so.
I wouldn't be waiting a few more months in the hope they make a positive decision. I'd be beating their door down one last time telling them that I feel very unwell and if they cannot decide how to treat me then I still have a supply of levo ( how on earth do you have 5 months supply to hand?) and intended to take it as before, as a trial ( if that dose worked or with 25mcg extra) and would wish to be tested in 6 weeks time. Call their bluff, it might push a decision, if not consider self medicating.
Life is too short to hang about for important decisions! Medics are fallible human beings not superior beings...though some of them seem to think they are!!
I bought extra last year in case I needed it. I have added some of my test results. Only folate was on the low side and my cortisol was 345 the NHS was looking for a minimum 350 so now they don't know what to do. I feel absolutely terrible. I can do my saliva test tomorrow. I had my dhea tested by blood too a bit low. Never had hashimotos my antibodies always low.
You said to humanbean that "I have ordered a load of levo waiting for delivery" and you already have 5 months supply....so well stocked should you decide to self medicate
DHEA declines naturally as we get older.
Cortisol levels vary through out the day....highest when you wake, then dropping. What time was your test done?
I'd suggest most of your problems arise from under/no medication....
Cortisol was tested at 8.45 an hour after I got up. I always like to have a large supply in case something goes wrong with supply. I had a private prescription before but have to pay through nose for it. I have been fighting with docs for years over it. Every time I had problems they blamed my private doc, called him a quack and told me I should never have been on thyroid medication. They are just keeping me I'll now.
The whole situation is an absolute disgrace, the NHS is on its way out. They clearly aren't training doctors properly or are using out of date, completely inaccurate information , thyroid patients need to take complete control over their own condition because they sure as hell aren't going to. So much for the cradle to grave concept and if it comes to that the hippocratic oath .
Also can I ask what doctors actually do . They don’t see Covid patients, heart pain straight to hospital, broken bones and serious injuries the same. I can’t work out who they deal with . I agree their knowledge has lessened because of what is taught and plus they don’t know the family . GP’s back a while very often knew the whole family snd possibly parents of current patients.
Rumours from within the sacred walls of the temple of our medical gods are - nurses are getting fed up with GPs sitting pushing papers/ feet up on desk/ seeing some patients (their choice). Could go on but you get the jist.
An old dynasaur here - for our tradional conditions there was a set protocol which worked, that was in the good old days when doctors and nurses really cared and practiced real medicine Today - garbage - take away their clip boards and gadgets and they would be lost. You can train a monkey to use a gadget and today the gadget even tells them the results and what to do. A machine is only able to use the data put into it, so organise the data and get what results you want.
A patient presents with certain symptoms - you use your eyes, nose, ears and hands and brain. Hence the old time doctor's visit - hands on. NO machine can be substitute for them, seems, from where I am standing, we have zombies who have lost all the above and on this and other forums is the evidence of the terrible results - lives ruined. Yes - medical training has changed on all levels of the profession - this too is deliberate - aim up ahead - robots - hello elixa!!!
My days, many moons ago, we really did care for our folk, there were exceptions but as general rule we did our very best.
This forum and PA literally saved my life, I was down and almost out. I am afraid this is what the NHS has sunk to and what was planned many years ago - public/private parternship - now when it comes to money which was bound to win - one decrease whilst the other increases, end game 2 tier with just the minimum of help for the weaker one. This is why we are seeing so much reluctance to provide the medication needed - cost, the factor in the running down of our hospitals, I think it is called asset stripping..
All planned- push for what you can get but wisely make alternative plans to help yourself if you can. There are noises being made about the amount of blood tests the GPs are carrying out and the need to cut the amount down. Once it is voiced, then expect it to come to pass.
I am ashamed of my profession, hang my head and weep many times when I read the awful stories on here and as an old woman, it is heartbreaking when I see the young ages of the poor folk. What makes it worse for me, is knowing the solutions are there and if treatment given, lives would be 100% improved,.
Sorry for the rant but this is beyond the pale, how the so called healers can live with their consciense is beyond me, I won't voice what I hope they receive up ahead, that is for God to decide but if it were up to me they would be running for hills right now.
Thankyou Islandlass......over the years many have campaigned to try to stop this downward flow of poor or even worse no medication to no avail. The pandemic has worsened the situation as now you just get a phone call and based on them listening (if you are lucky) they decide. Words fail me tbh. In truth its no more than pretense at health care. A mirage-In reality it doesn't really exist unless they fast track you and then they zoom into action.....well they did for me. One of the GPs said to me, my medical record reads like a disaster zone but I'm "surprisingly" well.......thats because I'm proactive and won't be dismissed with generalised statements of.....your bloods are fine (when they arent), its part of aging.....tosh! Etc.... I learnt early the hard way that listening to that rubbish leads to poor health for sure. You sound like one of the good ones who really cared & did their best..... not one of the 9-5 pen pushers trained to follow a script on a screen.
I think it’s time for you to start taking matters into your own hands and find a new Endo or self medicate. I’d order in some T3 and plenty of t4 and have tests done privately so you know your baseline levels of T3 and t4 and tsh. Then start on a sensible dose of Levo and test again in 6 weeks to see what you need to add.
We’re your levels ever good? Atrial fibrillation can be when you’re under medicated I think.
They stopped your levothyroxime and are refising to reinstate it????? Are they bonkers??? OMG!!! Of course you are worse and of course your TSH has now crept up and presumably your ft4 and Ft3 are sinking like a stone. Do they expect you to run on fresh air? And of course your heart rate will have episodes of being fast as your whole body is struggling. This is mal practise. Before they stopped your levo were you actually optimally treated or could it be your fast heart rate at night was due to under medication not over medication!! Your adrenal problem could well have occurred because in actual fact you have been under treated for a long time causing your adrenals to become stressed as they have been picking up the flack for not enough thyroid hormones.....Sorry I feel so so so angry for you. They are causing you harm and to be honest Id move doctors quickly. Shame on them!!!
And if it makes you feel any better. My GPs level of skills has sunk so low that they cant work out simple mathematical calculations for scripts. I take two medicines that require two doses per day. This means for a months supply I need 56 of each type pf med but for months they keep prescribing 28!! So have to keep asking for more tablets each time explaining they need to increase the script as the current one only lasts two weeks.......but no they carry on prescribing the wrong amount. At my medicine review I raised this and asked for it to be changed to 56 or 112 for two monthly repeats. Oh yes said the GP will do that.......what do I get? Yep 28 yet again.......I despair!! ..I mean if they cant even work out how many tablets required over a set period of time how on earth can they possibly do any proper diagnosi or treatment.
So no never rely on doctors.......well you can rely on them.... to get it wrong!
I really sympathise with you and have had a similar experience with high pulse at night myself. After the chemist gave me accord instead of Mercury I immediately had palpitations and a fast pulse at night. I took this for 6 days and, thinking I was over dosed, stopped everything for 4 days. Pulse ( especially at night) got worse so I ended up in AE with a resting pulse of 140. Medichecks books showed T4 at 10.
I then restarted my normal medication and it has completely resolved in a week.
I found this article, about high heart rate due to hypothyroidism, but it is not well recognised.
Paul Robinson writes a lot about cortisol, I would suggest investing in his book The Thyroid Patients manual - I also had the racing heart in the night amongst other symptoms, I tried raising my T4 to get my T3 up however because of genetic defects I just don’t convert well. It is T3 what brings my heart rate down.Through learning and listening to the advice on this site together with investing in this book I gained enough knowledge (so far) to influence my GP/ Endo in my treatment, which is still a working progress…
Unfortunately the whole process has cost me a lot in private tests but they have been necessary
One thing I do suspect (based on my own experience, but we are all different) is that your low cortisol is likely linked to your racing heart and even if you get to see an Endo it’s unlikely they will connect the 2.
Therefore follow the advice on this site, buy the book and advocate for yourself with your GP/Endo - or buy the medication online like many others do - best of luck 😊
I bought Paul's book about 6 weeks ago. Things are so bad that every time I sit down to read it I fall asleep. Yes I know you are right from past experience my heart rate goes faster when my thyroid function gets lower. Last year I had to take low dose Hydrocortisone to sleep. My GP screamed at me, we had a big fall out and that's when I was told no more levo. I live on a Scottish island. Lots of doctors but they are all stupid. My sister is in Aberdeen and has hashimotos her doctor is just as stupid. Unfortunately none of them know what they are doing.
I know what you mean re falling asleep reading the book, I was exactly the same, I then found some YouTube videos he’s done which I played over and over till it went in!!He has a website with some good blogs and also a FB page where you can ask questions.
I was lucky that I had a Dr who would listen (if I prepared before my visit and highlighted relevant info, I also showed her my private tests). I got lots of great and invaluable support, advice, help and guidance from the lovely people on this site and really don’t know what I would have done without it!!!
My advice is listen to all the advice and do what feels right for you, from my experience it’s a lot of trial and error, one step forward 2 steps back, but as much as finding what works it’s also finding what doesn’t work and eliminating other possible causes - it’s long, tiring, expensive, but worth it to feel better.
I do believe I’m getting there now and have had glimpses of feeling great, but I’ve also discovered that it’s not linear (if that makes sense 🤔)
Oh poor you and your poor sister too. This is why so many are having to self treat. Over the years I have tried to educate my GP. Its a long process.....they know I know what I am doing so are resigned about me! Ive had big rows especially with a cardiologist who tried to over ride the endocrinologist advice - the endo was a one rare one who actually knew about effective treatment for hypothyroidism so backed me. He retired a few years ago. I only went to him to get him to under write my ndt that I'd been on 10yrs & very stable. These days to be well you have to be a patient expert and an advocate for yourself, stubborn and persistant or you will be left in poor health. I suspect this is the case for many chronic conditions sadly. The doctor patient role is reversed as you the patient have to drip feed the doctor the necessary info repeatedly until they give you the necessary script.....in the meantime self funding your own meds. In the 20yrs Ive had hypothyroidism the situation with the treatment has worsened, ignorance has spread like wildfire. I despair cos if ever I become too ill to fight my corner am pretty sure my thyroid treatment will be badly managed.
Regardless of any T4/T3 comments here, you say you "don't believe" you have sleep apnoea. Why not let them do a sleep study to prove either way once and for all? To be honest, the description of your night waking episodes does fit in with this condition, and, if diagnosed as such, can be managed. On the other hand, if no evidence of this is shown, you are in a stronger situation to request correct thyroid medication. Sleep apnoea can be a cause of hypothyroidism, and several other conditions, too. Just arguing the point does you no favours.
They did a sleep study but it was pure rubbish. I had to travel from the islands and book into a hotel with my husband. They gave me all the equipment to sleep with but it was far too tight so I hardly slept. I spent most of the night swearing at it and tugging and pulling at it. Finally I threw it off at 5am and went back to bed for 3 hours sleep. I got a letter telling me the test may have shown signs of sleep apnoea and as soon as I questioned their diagnosis I suddenly became a severe case that stopped breathing 49 times an hour! I just don't trust them. I bought a good Fitbit that shows I get more rem and deep sleep than my husband or my sister. They tried to tell me I wasn't getting any. I have now purchased a heart and oxygen monitor to wear when I'm sleeping so I can see for myself what is happening. Personally I think the NHS are a bunch of crooks I have lost all faith in them.
Time to take control and self medicate magsyh .You have levo...
We should not have to be at the mercy of badly educated individuals purporting to care from cradle to grave.....they nearly killed my then 6 month old grandson at one end of the scale and their neglect caused my mother's demise at the other.I'm old and grew up being told, " doctor knows best"....no more. They hardly even look the patient in the eye now.
I had a sleep study and the equipment like you say was so uncomfortable and kept falling off. I had a cpax machine and it was the worst thing in the world to have to try and sleep with a horrible mask on my face. I even bought my own mask but things were no better, I had indents on my face were it dug in but if it’s not tight it leaks so I suffered it until I couldn’t handle it anymore after 3 months and binned the lot. I wish you well and really pray your Drs help you.
Just wondering if anyone has given you a 24hour heart monitor & then if necessary refer to cardiologist? Don't give up, keep pushing and explain to GP what you want and why within reason they will. There seems to be a huge lack of understanding of how thyroid symptoms affect daily life. NICE guidelines updated Nov 2019 have a read & point out to GP how treatment should be going. Obviously not telling GPS how to do their jobs as mine are fantastic . We have a two way relationship were I go on, and on, and on and then they tell me what we're actually going to do why and how, it really helps.
Yes they did that too I was able to record it 5 times a night sometimes 140-170 BPM and they are not interested because no afib. They say my heart beats in normal rythm so I'm fine. I was prescribed propranolol for my anxiety because I refused antidepressants. I only take 10mg per day because I refuse to be stuck on beta blockers.
You are lucky with your GP Brendi. Many dont listen so you have to cherry pick who might. Personally being referred to a specialist who you have carefully picked yourself seems often to be the best bet as GPs generally don't like ignoring advice put in writing on your record .....but no guarantee -some will still ignore. I dont understand really why its so hard! Being optimally treated means you are less of a drain on nhs resources not more!
I am on natural thyroid hormone, which works great until they change the formula or recall it for some reason. So I ordered some from Thailand, and I felt great the very next day. By the way, I have a wonderful doc who goes by how I feel and not the lab results. I’ve been self medicating for years, and he’s ok with it.
You definitely don’t have continuity of care thats for sure and sleep apnea is standard protocol when they don’t want to deal with thyroid issues ….. I went through this and was forced into a sleep study which was the most insane thing I ever did I couldn’t sleep for the study but yet still diagnosed with mild sleep apnea “scam” I currently sleep 8 hours most days without the machine and with machine barely 4 because I feel like Im suffocating …. I say bull on the sleep machine they need to tend to your thyroid levels first and maybe its time for you to see a new doctor.
I have seen loads of doctors because they keep passing me about because they don't want to deal with me because I'm too demanding about thyroid issues. I was told they can't help me beyond their training and they are not interested because natural remedies is not how they operate. I agree about the CPAP. My friend in Germany has an obvious thyroid problem. She's 66 and all 5 of her daughter's have diagnosed thyroid but because she was older they sent her home with a CPAP no thyroid treatment.I refuse to use it I have read so many bad things.
I was given a sleep study test after complaining about being constantly tired and because my thyroid levels were considered normal according to Endo’s my tiredness was possibly from undiagnosed sleep apnea like I said did the crazy sleep test got the machine can’t use it since it actually causes me to have more tiredness….. My advice do the sleep study and get a cpap machine if the test says you need one “probably will” use for a couple of months see what happens and if nothing don’t use it anymore and keep that close to your sleeve and guess what they won’t mention the cpap again… at least my endos don’t.
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At the end of my tether - please help
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Coming to the end of my thyroid journey
