Anyone else feeling alone? I know there are so many on here having battles due to the lack of proper treatment and medical care and right now with this covid 19 things are so much worse. I ended up in an ambulance again on Saturday night. Same thing woke up at 2am heart speeding out of control, dizzy and sweating. When the ambulance arrived my blood pressure was 202/103. I was taken to hospital which was empty like a ghost ship. All they were interested in was my 50mcg of levo and how I must be hyper and it was all my own fault because I had gone private. In their opinion I shouldn't be on levo and despite all my symptoms I'm not hypo coz my TSH is not high enough. I'm a bit concerned as I was doing well in November my T4 was 17.9 (10-22) and T3 was 5 (3.1-6.8) but blood test by NHS in February T4 had gone down to 13.9. so I upped levo to 75mcg but by middle of march all my hypo symptoms were even worse. So I am assuming that I have reached the magic number when a small amount of levo makes you worse instead of better? I have 2 tests lying here for medichecks but can't get blood drawn because of covid19. GP is just not interested unless I stop taking levo and do as I'm told. I don't have hashimotos my antibodies are low. I have always thought that my thyroid problems are nutrition deficiency so past month I have been doing all I can to fix it but can't monitor it with blood tests. The doc said my heart is perfectly healthy all its doing is having bouts of beating much too fast but it only happens when I'm asleep? When I asked him why he said stop taking the levo! Without the levo my T4 and T3 are much too low and I can hardly function. The heart beating too fast has been happening for years long before I started levo. They are basically saying dump the levo then we will consider it could be something else but I know if I reduce the levo or try to stop taking it I will be living on adrenaline like before. Levo has actually lowered my resting heart rate, my blood pressure, and all my other symptoms. So unless I can find the solution as to why I'm hypo I'm at a loss. Anyone else out there?
Feeling very alone?: Anyone else feeling alone? I... - Thyroid UK
Feeling very alone?
You are not overdosed on 50 to 75 mcg of levothyroxine. You say you are hypothyroid but what you’ve experienced sounds like a thyroid storm. I am not familiar with whether people suffering from hypothyroidism can also experience it because it is usually associated with hyperthyroidism and/or Graves’. However, you could have also just been experiencing night sweats and anxiety, which are symptoms of both hypothyroidism and hyperthyroidism.
Please don’t listen to typical doctors, most of them honestly don’t know what they’re on about when it comes to thyroid issues and they don’t care to. I am not a UK resident but I’ve been informed by many members of this forum that the NHS are notorious for being ignorant and careless towards thyroid disease sufferers.
You cannot go hyper from 50 mcg of levo, that is literally a typical starting dose. Even 75 mcg is usually too low as a long-term dose for most suffering from hypothyroidism. If taking levothyroxine makes you feel better than stay on it and try to tweak the dosage accordingly so you don’t end up having another similar episode. Splitting the dosage into morning and late afternoon or evening doses can help reduce the feeling and symptoms of having a hyper swing, which is also what you may have experienced.
You say and I quote, "You cannot go hyper from 50 mcg of levo, that is literally a typical starting dose".
It's not impossible to be overmedicated on 50 mcg of Levo particularly if you are elderly like myself. My TSH has gradually become more supressed over the last two years... latest result was 0.05 with the T4 at 19.7... GP does not test for T3. I have Hashis. TPO antibodies in 2014 were 600+.
I recently spent several hours in A&E under observation having had episodes of palpitations and arrythmia which have increased in frequency. When these occur at night, it is very scary to be woken up suddenly from sleep. In addition to this, I feel "tired but wired" if you know what I mean? I also have sore, aching muscles and bouts of cramp.
I've had a telephone consultation with my GP and we both agreed to reduce my Levo to 25 mcg. The other possibility is that I have flipped from hypo to hyper because of the Hashis. Hopefully this will only be short-lived.
I have also been referred for 24 hour ECG monitoring but when that will be, I've no idea because of the current situation with lockdown and restrictions on non urgent cases. On a positive note, the A&E doctor reassured me I was not having a heart attack and that my blood tests were looking good... guess what though? He didn't do any thyroid ones.
If your body is unable to tolerate a starting dose like 50 mcg of levothyroxine, it’s always because there is another underlying reason that is thwarting your body’s ability to properly absorb and utilize thyroid hormones. It’s usually due to low iron levels or low/high cortisol levels but there are many other reasons.
In your case, your antibodies are high but if you were to successfully lower them (and also make sure all your vitamins and minerals are optimal or at good levels, at least), your body should be able to start utilizing thyroid hormones efficiently.
Low estrogen can also worsen thyroid issues and impair the body’s ability to absorb and utilize thyroid hormones so it helps to raise them using natural methods (foods and herbal supplements known to help increase estrogen levels.)
*edit: forgot to say that the “feeling tired but wired” symptom is most likely because of high cortisol levels at night. I had that for a while so I started taking a holy basil supplement to lower them and it has helped.
I have been taking 50 mcg of Levothyroxine for several years. I was on 25 mcg originally because that is the starting dose recommended for elderly people like myself. I am way past menopause so estrogen is out of the equation here. I don't have low iron but I do have raised ferritin. My vitamins and minerals levels are good and includes supplement of Vit D (was shown to be insufficient two years ago). I do eat some gluten free products but am not Coeliac.
With regard to my antibodies, I don't know the current level as GP won't test for them but I avoid tap water where fluoride is added to the supply. l also make sure my intake of selenium is adequate. Don't know about my cortisol level but you may well be right and it rises at night. Have never heard of 'Holy Basil' but will research it. Thanks for that and glad you find it helpful.
I'm now on week one of reduced thyroxine so hey ho, maybe things will improve!
Yes, unfortunately, it’s very hard for a doctor to take a thyroid disease sufferer seriously and agree to test for thyroid antibodies, let alone a full thyroid panel test.
Well hell mend them, so they are resorting to blackmail now. are they....no help until you drop levo! Unethical!
Who prescribed levo....or did you self medicate?
50 mcg is a starting dose and even 75mcg is a low dose
50mcgs levo would not make you hyper....not, even going by your labs, overmedicated!
It sounds as if you need more levo.
Have you seen this
thyroiduk.org.uk/tuk/about_...
Sadly most GPs are clueless about thyroid care, they wrongly dose by TSH and if the patient doesn't respond to levo they are struggling. Your GP "isn't interested", I would suggest, because he is struggling.
This might be of interest
bmcendocrdisord.biomedcentr...
The authors are eminent in their field.
Is it possible that you had a panic attack on Sat night? Anxiety/ covid concerns
Fast hear rate/undermedicated......the heart needs a lot of thyroid hormone
Your November labs....
FT4 is 65.83% through the range
FT3 is 51.35% through the range
For good health both should be close to 75%
You are still hypo on 75mcg levo and need an increase.
It may turn out, after further increases and tests that you do not adequately convert the storage hormone T4 to the active hormone T3 which is equired in a constant and steady supply by every cell in the body. This is evidenced by a high FT4 with a low FT3. To support conversion vit D, vit B12, folate and ferritin need to optimal.
You may be right when you mention nutrient deficiency as a possible factor We know our bodies best and it's important that we listen to them.
I would suggest you are hypo because you are undermedicated! Can you visit another medic?
Good luck
DD
I was diagnosed by Dr F! He's on thyroid UK list. I buy my own levo now because the cost through him was very high. I do suffer from anxiety and my heart is very reactive to most things. I've had tests galore, cost a small fortune. It could be menopause? I'm 62 only just stopped bleeding last July. I've never had a hot flush etc so don't know what menopause is? I am anxious over covid19 but not about the virus I'm going potty with being locked up!
I am very nervous about upping levo as I know my thyroid works fine and I convert if I have enough T4. So I keep thinking it's nutritional. 4 years ago I had contrast dye for a CT scan. I lost 11lb within a week and I had great thyroid levels for over a year. That's why I think iodine has something to do with it. I asked my doc about it and was told " I don't know" so I don't want to live on levo unless it was necessary.
Why are you afraid of levo for life.? It's not a drug but a replacement hormone which the body needs to be able to function.
On what basis do you comment, "I know my thyroid works fine"?
If it "works fine" you should be symptom free
Your Nov. labs suggest you need a dose increase....see above.
"I convert if I have enough T4" at 65.83% through range you barely have enough T4!
In your case I would be looking at clinical symptoms combined with labs.
and in the first instance they suggest undermedication.
Your anxiety about your health and how to fix it is a typical hypothyroid symptom
If you become optimally treated then anxiety should be relieved.
I'm not a medic just a member who has a very complex thyroid hormone issue, discovered, at a few years ago at the age of 70, thanks to excellent guidance from here and a great deal of research and reading.
Start with the facts...your lab results and your symptoms.
Has Dr F been monitoring your treatment since diagnosis
Lockdown is tough but avoiding the covid-19 virus saves lives.
Good luck
DD
Dr F was monitoring but I got the impression he was out to make as much money as possible. I'm not keen to suppress my thyroid if it's nutritional deficiencies. I'd rather try anything than be stuck on levo coz if my GP won't give it to me what happens if one day I can't get it? My sister has been on it 17 years now her doc has messed her up by reducing her levo just because her thyroid is suppressed. She has put on 3 stone. It's a scary decision. My sister's TSH was 140 when she got her diagnosis of I was like that I wouldn't think twice but I can't find a doctor who will help me discover why? I would like to fix it but only when I find out why it's happening. If NHS won't agree I have a problem I need to find one who knows what he is talking about and why I'm hypothyroid. I was diagnosed as a child but couldn't swallow the tablets so nobody bothered further.
Most women hit menopause between the ages of 45 and 55, some a little earlier and some a little later. It’s said your menopause age is usually roughly around the same time your mother hit hers.
Being 62 and experiencing what you have been is not uncommon or abnormal. Your hormones are probably just trying to find their new “norm”. It’s also not unusual to hit menopause earlier and get a few periods or “spotting” afterwards. It can take time to finally stop bleeding.
I would also suggest you check your cortisol levels, they may be too low or too high, which is perhaps why you’re unable to regulate stress or anxiety with less difficulty.
My cortisol levels are normal just slightly low in the morning? My mother died at 54 she hadn't gone through menopause. I think docs just assume that at my age I'm passed all that years ago.
According to several sources, especially Stop The Thyroid Madness, you need to look at where your cortisol levels fall and not just whether they are within range. I don’t know if this information is accurate but it makes sense to me because a lot of the times doctors tell us our lab results are normal just because they “fall within range” when, in reality, they are not optimal and we still feel lousy.
Here’s a link that may help: stopthethyroidmadness.com/s...
It’s not a set rule that you hit menopause during the average age range that most women do. I also wouldn’t listen to a male doctor’s opinion on such things. I find it hilarious that they think they are qualified to even have an opinion on the subject.
I have not yet hit menopause as I am not in that age range yet. My mother hit hers in her mid fifties but her experience of it was not as straightforward as it is described in many sources. That is to say, it happened over a period of time until she finally stopped getting her periods. That’s why I suggested that it may be your body’s way of trying to make it to or through that stage. Not many women make it to the 60’s without having fully passed the menopause phase.
*edit: I realize I made a few mistakes so I edited them. I wasn’t getting my point across as I initially intended, sorry!
My elderly Dad is on 100mcg a day and I think he is under dosed because his TSH is about 5. The way you are being allowed to become ill is really bad and your Doctor needs to go back to medical school or read up on thyroid disease. After the coronavirus is over please change your doctor because he clearly has no idea how to treat hypothyroid. Unfortunately you are not alone and the NHS might be doing a fantastic job treating COVID-19 patients but they are doing a crap job treating thyroid patients. I actually worked for the NHS and even I could not get treated by my GP who told me I had the menopause for 2 long years and I became very sick. You can read my pathetic story on my profile page. Please don't let this doctor make you more ill than you already are.
On 50mcg my TSH sits at 2.4 on 75mcg it went down to 1.9 I live on an island and the doctors are all of the same opinion. I have seen quite a few and they are all only interested in TSH. I demanded to see an endo and she just made fun of me so I gave up went private but that has been very costly. This heart going mad problem is very scary so I'm at a loss on the way forward. I've had adrenals checked, all my hormones, full bloods you name it but no answers.
Speeding heart sweating and dizzy - low blood sugar maybe? Blood sugar tends to dip at around that time of the night.
This is something I have considered. I talked to my doctor about it and they laughed at me saying thyroid and blood sugar had no connection. I know that is not true, another reason I have no faith in them. Every time this happens they test my blood sugar and tell me it's normal but I have noticed that after it happens I pee a lot! Surely the adrenaline is released to up my blood sugar and when they test it's slightly high for my liking and then like a diabetic I pee like mad. My blood sugar hb1 a or what ever it's called is usually about 32.
Hypothyroidism and insulin resistance often go hand in hand. I have both and yes, it is very common to have blood sugar issues with hypothyroidism.
I had a chuckle at this, not at you but at your Dr. I remember 10 years ago when I was very ill, I told Dr I hadn't felt well since my thyroid was removed, he said 'well it can't be thyroid related now because they had removed the problem' must be my age, menopause, weight gain, excessive sleepiness, arthritis, anxiety, depression etc etc of course it was because no one thought to put me on thyroid replacement, tbh I am lucky to be alive.
What we need to remember is that drs are often totally dim. They think they know it all but some are dangerously inept. I would ask for 2nd opinion from a Dr who knows a bit about thyroid.
This is a typical case of 'no idea what it is so blame something pref the patient and medication rather than own up to not knowing'
Endomad, what a total idiot - you really couldn’t make that up could you! This site amazes me - just when I’m sure I’ve heard everything up pops another fine example of what a lot of us are up against.
Absolutely. I had a long joust with my [male] gp about my thyroid and my fam thyroid hist etc and my ME/CFS etc and he assured me I couldn't have a thyroid problem and then ended the conversation by saying "sure, what do I know about thyroids?". As for your doctor Endomad, it beggars belief!!!
Ha, did you have the courage to say ‘not much’ when he said that?
No, sadly, I was a study in incredible self control when he said that. Inside I was thinking to myself "so if that is the case then why are you sitting behind that desk with all those letters after your name and if you don't know anything about thyroids, what else do you not know much about????" but I didn't say it - what is the point????
There is a lady on Facebook called “The food Phoenix” She’s was a consultant who developed health problems after having An MRI scan with contrast. If you are on FAcebook she would be a good person to discuss your health issues with.
Sounds like panic attacks - although your blood pressure was very high. All a bit strange. Maybe just find a good endo and work with them. Check all your vitamins and minerals regularly as things like vit D deficiency can cause weird symptoms.
My blood pressure isn't normally high. It was probably the stress of the situation.
I don't know if this is reassuring or not, but like you, I have recently been experiencing and woken up by a speeding heart, sense of racing pressure and palpitations. It often occurs between 4am - 6am and then settles. I've had this symptom for some time. I have Hashimoto's and tested positive for DIO2 polymorphism - in my case, I wonder if poor T4 conversion lies behind these symptoms. I am currently taking 125 mcgms - 150 mcgms, alternate days, as I feel better when TSH is slightly suppressed. Lately, though, I have been feeling really tired, with swollen lymph gland symptoms. I'm wondering/suspecting if the symptoms I'm experiencing could be related to Covid-19 stress - coupled with on-going affect of non-existent NHS treatment plan. I hope you feel better soon. Stay well.
I think stress from the current situation can definitely cause such issues, by adding to your already existing conditions that cause such symptoms.
The thing about stress and its ability to increase or lower cortisol levels is that it sneaks up on you. It doesn’t happen suddenly but over time so it can be pretty exhausting and shocking on the body when it finally reaches the intense stages of adrenal fatigue.
Get the finger prick test sent to you and do it yourself like many of us have to. Iv had one done because GP surgery has stopped for time being and soon I will have to get another,
Let’s just say for giggles the doctor is correct and your 50-75mg Levo is causing your heart palpitations are you taking the Levo before bedtime? It seems strange to only have issues at bedtime and not other times of the day, what else are you taking and please provide a list and when you take them.?
I have found that palpitations in the middle of the night are often signalling that I've gone hypo. I'm on T3 only, so the need to keep steady means factoring in the changes day to day, like extra stress, exercise, cold weather and so on.
I guess it is because my heart is having to work harder to keep everything going.
I agree it is very likely that menopause is also having an effect.
If it weren't for this website I would certainly feel utterly alone. At times of struggle with medical ignorance and arrogance I think of the thousands of us , I picture us as a great crowd doggedly keeping on , led by some amazing and devoted fighters, and becoming gradually more of a visible presence. I very much hope it will be different in my daughter's lifetime. She has recently also been diagnosed with autoimmune thyroid .
Know exactly what you mean WD about being hypo. When I was being treated for Graves’ disease with block and replace - every time I needed an increase in my levo I got palpitations again - first time it happened I thought I was becoming hyper again but someone on here suggested I was needing an increase in levo and sure enough when the levo was increased the palpitations disappeared.
Hi There,
The best advice I can give you is to change your GP, from my personal experience I saw 5 GPs over a ten year period before, I went to a new GP and begged him to help. I know its hassle but check online you can review the local surgeries before making the change.
The doctors I saw before, it was always I was too fat that was causing all my problem or so they said , I had an appertite like a horse and could eat and did eat like crazy. Apparently my appetite was craving for Thyroxine.
I went to a new GP, after having bloods done, found out I had Hypothyroidism, and after about 6 months of treatment the appetite went away and I started feeling like a normal person again. Down to 14 stone now from nearly 20, so find another GP who "gives a shit" and get you life and health back on track. Oh, and I feel the best when My Levo is in the high end of the recommended range so thats where I keep it.
And I wish you all the best for your jouney
Hi magsyh, I am wondering if perhaps you need Magnesium. Magnesium effects your heart considerably, especially if you are low and many of us are.
I have been using magnesium glycinate but to be honest I'm taking so many such as b complex, vitamin D K2, vitamin A, vitamin c, zinc, selenium, I don't take them all every day. I had everything last checked in end of November my numbers are very good
Worried, scared and feeling alone. Seeking advice on hypothyroidism and levothyroxine. 
On Block and Replace - can I have both hyper and hypo symptoms?
Scared - GP taking me off my Levo!!
