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Thyroid UK
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Hope please

I’ve recently been diagnosed as having severe hypothriodism after putting up with feeling terrible for a few months, but putting it down to menopausal symptoms. I gave up my job in June when my brain fog made it difficult to function and now care for my grandchildren, I’m 53, but still thought it was menopause and was fortunate enough to be able to do this. Things got progressively worse though until I was waking up with severe adrenalin rushes, palpitations and sweats at night, and heavy feeling in chest in the day, joint and muscle pain and feeling I was going mad. Dr did an ECG which was normal and blood tests to check thyroid function. My TCH level came back at 28.5 a week later, blood test was repeated a week later as they were concerned it was so elevated and didn’t want to start meds until it was checked again, and it was then 37.9. They then started me on 50mcg of Levothroxine, which I’ve been taking for 6 weeks now. After 2 weeks I felt a lot better, no joint and muscle aches and Adrenalin rushes and heavy chest feeling went but symptoms now rapidly returning. I’ve had blood tests last week including antibody tests and been told I need to see the doctor but can’t get an apt until Friday this week. GP wanted me on current dose until bloods reviewed. The adrenalin rushes have started again, waking me at night and palpitations day and night - has anyone else experienced this as I can deal with most symptoms but this is driving me mad, as it’s a dreadful feeling. I was away for the weekend, went to bed Saturday night at 11.30 and was awake 4 hours from 1.30 where I just couldn’t get it to calm down, I’d had some alcohol that night as was out for a meal, but haven’t had any since and have reduced caffeine as concerned about stimulants at the moment, as I’m keen to avoid more rushes.

Any advice on what I should say to GP when I see her Friday as I’m not convinced their isn’t a cardiac issue despite a clear ECG? I’m thinking they’ll up the Levothyroxine again as she did say as it was so severe it may take some time to sort my levels but it would be dangerous to start at a higher dose.

Thanks for advice and hope that this will calm down in the coming months.

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Hi Michelin, welcome to the forum.

I don't know anything about adrenaline rushes, never had one of those, but I can tell you that it's perfectly normal to feel well on a dose to begin with, and then feel the symptoms creeping back. It just means that you need an increase in dose. Your dose should be increased by 25 mcg every six weeks until the symptoms don't come back any more.

50 is just a starter dose, and not likely to be enough for you. But, I think your doctor was over-dramatising a bit saying your hypos was so severe. 28 is far from the highest TSH I've even seen. Mine was 45 at one point, and some people have it over 100. So, don't worry unduly about it.

I very much doubt you have a cardiac problem if your ECG was clear. Palpitations, and such like, are hypo symptoms, so absolutely no danger in increasing your dose. It's the best thing you can do. :)

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Thanks, very reassuring.

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You're welcome. :)

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Very well Explained and so True . I would just like to say from my own experience that when I was going through with palpitations I was missing some T3 . I was on high doses of T4 but I'm not a good converter which most Endo/Dr's will have you believe that T4 will convert to T3 . Many of us just don't . I add some NDT for my T3 with my T4 mix .

No Endo/Dr will admit/know that palpitations can come from lack of T3 that our hearts brains adrenals muscles etc. need .

I hope you get sorted out very soon .

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I'd echo all greygoose has written. I was reading recently of a young man presenting to A&E with a TSH of 306 and FT4 of only 0.24, exhibiting hallucinations, paranoia & aggressive behaviour, who was subsequently diagnosed with myxodoema psychosis and treated urgently & intravenously with hydrocortisone & levothyroxine. That is perhaps a more definite case of severe hypothyroidism. Otherwise, if your thyroid generally isn't functioning as effectively as it used to, to produce an optimum level of the hormones your body needs, the treatment is to supplement or replace with exogenous thyroid hormones. You could carry out a private 24 hr saliva cortisol & DHEA home test, to identify if & when there is a problem with adrenals; and re. alcohol, some, not all, have found that their capacity or even desire for alcohol, diminishes.

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Wow, sounds horrendous! Thanks for your reply, 👍

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Could you please let me know where to do private saliva test for cortisol & home test for DHEA. Thanks.

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The ThyroidUK website has a section about it. There are several mail order tests you can complete at home. I think Genova and Regeneris (may have spelt that wrong) are the two companies that do it.

Blue horizon, which does perfectly fine thyroid panel tests has a saliva cortisol test that isn't fit for purpose (ranges very wide and going all the way down to zero so impossible to show a low result, and no DHEA test), so be careful of that.

Unfortunately both of the good ones are a bit more fiddly to order from, but worth the extra effort in the end.

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Adrenals play a huge part with our thyroids/meds . They work in unison . Great Advice .

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Welcome Michelin to the forum. Sorry you are feeling so dreadful but it's not surprising. Does your surgery have any emergency slots? Mine leaves two slots unfilled each day then it's a first come first served policy. If you have been told you need to see a doctor then don't be worrying about what to say as she will know and expect you to be still feeling rough but I appreciate that you can't help being anxious and it's easy for me to say but your doctor is following procedure. I also thing your heart is just reacting to needing more medication, nothing sinister. When I changed to a different hospital I wassent for an ECG and the staff in the department wanted me admitted but the endocrinologist dismissed the idea as nothing wrong with the trace other than being too fast which he said under the circumstances is understandable. It's a natural reaction when we are worried and so put ourselves under more stress. I'm sure if you had a heart problem then they would have picked it up. Now I'm not saying the next thing to worry you, quite the opposite but because our thyroid is important as every cell should benefit from what it does then symptoms can be very varied. I'm told there are over 300 but thankfully we tend to get only a few. Also the medication you are getting is helping you but you may not thing it is at the moment but it takes a while to build up to the dose that is right for you. Each new dose takes 6 weeks to build up in our bodies so that is why we have to wait for that to happen before we are prescribed more as that could end up with being over dosed and that feels horrible as well.

I would make a point of asking for a copy of your results each time so you can see and understand what is happening. May sure they have the ranges on there as well as they differ for lab to lab so if you then post what they are we can help you understand what they mean. It's good she is testing antibodies, many don't but don't be over concerned it yours are high. If that's the case that can be explained more fully but 90% of us present antibodies so don't be surprised if you are one of them. Keep posting and I'm sure you will get answers to any of your questions now and in the future.

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Thanks, I will ask for copy of results and start to use the recording chart on the UK Thyroid website to help me understand better what is happening as my med doses change.

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Take heart that it will probably take a few months to slowly increase your dose and start to feel better. You'll know in yourself when you've reached the right dose. Get a copy of your blood results next time and post them here. There are some brilliant folks on here who can interpret them.

Before I was finally diagnosed with hypothyroidism I was having hallucinations and became very agressive and just couldn't understand what was going on. GP said my TSH was 'off the charts' and it was very scary. You're now being treated and you will get there 🤗

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How awful, glad I asked on here as feeling lots better already, see8ng the range of experiences and not feeling so isolated. I know many friends who have hypothyroidism but hadn’t realised they may have felt like this initially.

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It’s completely normal to have the initial relief and then symptoms returning just your body saying “yeah great, now can I have some more please?” You’re more than likely going to end up in the 150 zone with a tsh that high to begin with but your body just needs to be eased in to find your sweet spot

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Thanks! 🤞👍

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Dear Michelin. Sorry to hear you are feeling like this. If you look at my posts it's been an awful struggle for me too, I've had awful palpitations since diagnosis, heart has been investigated and I was offered beta blockers but chose not to. I was diagnosed as menopause at the same time as hypo.

Has taken a very long time to settle and I'm still being investigated as to why I don't react well to thyroxine I'm on a dose too low but have had to settle on it and accept my TSH is high as I just couldn't progress with higher dosage for now. HRT helps me a lot. It's been an awful struggle to work sometimes and earlier on all the time. I get through it but wonder how!!

This forum has helped me at every point giving advice, support and hope for sure

I wish you well

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One GP started me on HRT when all this got so much worse as I went saying I was struggling with menopause symptoms. When my bloods came back another GP told me I had to come off that and start the Levothroxine. Sadly my sweats at night and early morning are now back, which I was getting relief from, 😞.

Thanks for your reply, helpful and reassuring. 👍

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Why was your GP taking you off the HRT for the night sweats? This does not make sense at all. If you are hypothyroid, you would feel cold and night sweats are a clear symptom of menopause (75% of women experience them at some point)!

It is true that high oestrogen can interfere with thyroid hormone utilisation, but if you take it away from your thyroid medication, this should be no problem (for example you could take it at night). Or he could prescribe hormone patches that absorb through the skin, so this would not interfere with the metabolism in the liver.

If you are still having trouble with sweating and it is bothersome, I would go to see the doctor again, as this will impair your quality of life and it can also disturb your sleep.... just a thought! :-)

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That’s my thinking. It’s hard as each GP has their own opinion surrounding HRT. The one that prescribed it is the Gynea specialist for the practice and pro HRT, the one that took me off it is against but pro functional medicine.

My own opinion is whatever works for me as before the menopause and all this started I was working professionally is very responsible job and multi tasking for England. I would never have imagined I would give up working at such a relatively young age but never felt I was doing a good enough job anymore, despite protestations from others the reverse was true. My daughter is a nurse who specialised in obstetric and gynae and all the consultants she worked with were very pro HRT, so again advice can be very conflicting about the benefits and cons! 🙈

Going to discuss Friday and ask to go back on for trial period, I myself got concerned the HRT was causing the palpitations etc and now know from experience it’s part of the hypo issue so feel much more positive about trying it again as it worked wonders for the sweats and they are equally as debilitating as the thyroid symptoms, if not more so in some ways!

I will crack this, thanks for your advice and support! 👍 x

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I’ve had much relief from the ladycare magnet. Stopped all my palpitations and hot flashes. Well worth £35.

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Just read your posts and can see your ongoing struggle, what a nightmare for you, I wish you well too!

Just spoke to a GP on the telephone who has increased my Levo. to 75mg. TSH down to 5.2 so has come down well over last 6 weeks but like you I’m still feeling far from well, which is disappointing after feeling much better initially. Couldn’t understand some of the readings he gave over phone as my hearing isn’t good on phone either since all this started. Think he said my T3 was 14.2 . Have got apt with the GP who mainly treats me on Friday so will get them properly then. Positive news is the antibody tests were negative.

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Has your go run blood tests for menopause?

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Yes, many times over the last few years as I had an endometrial ablation 12 years ago so didn’t get the usual signal through periods stopping. I’m showing as post menopausal on bloods.

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Are you on HRT?

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I was for 6 weeks before hypothyroidism was diagnosed, but the GP that I saw for results took me straight off it. I felt so much better without the awful sweats in the evening and morning but she said I didn’t need it, symptoms were thyroid related! I was sceptical about that but as the chest/heart issues started 4 weeks in I thought it could have been that causing it so came off it, I now realise that those symptoms are throuf related not HRT, from replies on here, so feel more confident about trying that again too as I think in my case my issues are caused by both thyroid and menopause . Well today anyway....I think differently all the time, 😫🤪.

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It sounds as though all your hormones are out of whack. Your surges of cortisol should be reduced by thyroid hormone, but if you have low DHEA you can still get some symptoms. Low DHEA is also linked to poor T4 to T3 conversion. You can increase DHEA naturally with Zinc, Magnesium and B6.

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Thanks, I think so too, as a year ago I had surgery for a large pleomorphic adenoma tumour in my left parotid gland and haven’t felt right at all since, not helped by menopause symptoms too. The joys of getting older, although still positive and grateful as it’s a privilege denied to many!

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Zinc 30mg at night.

Magnesium -take late afternoon and middle of evening.

P-5-p - take with the evening Magnesium. Hopefully this combination should help. If you still struggle you can add Taurine which will help increase GABA and protect your heart. These I've tried with no trouble at all... but we are all different. Start with just one and build up from there. Magnesium or Zinc would be the first.

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Thanks so much! Will try, appreciated! 👍

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Zinc can lower Cortisol . Some take Zinc at night just for lowering Cortisol level for better sleep .

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Yes, I do. It certainly helps me to wind down.

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Thanks, will try this too!

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Hi I’m no expert but have been told I have autoimmune thyroiditis with high antibodies, not on any treatment yet.

My symptoms started with general fatigue, itchy skin, low heart rate, brain fog and headaches. I then had a six week period of what you are describing. I didn’t sleep more than an hour at night. Felt panicky and as though I couldnt breath properly if I laid flat, palpitations although heart rate never raised and some chest discomfort.

I gave up alcohol and caffeine and since this six week period last year haven’t experienced those symptoms again thank goodness

I do still have periods of extreme tiredness.

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That’s reassuring, as I’m the same. When this first started I sat upright in bed for 5 days as so much worse when I laid flat! I’ll keep caffeine low then and stay off alcohol, 😢!

Why haven’t they started any treatment for you...?

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I had a endocrinologist appt but he put all my symptoms down to the menopause!! Blood results haven’t been too bad so I’m one of those cases where they treat the results rather than the symptoms.

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There is lots of research for sub clinical hypothyroidism where the opposite is recommended as most people go onto develop full blown disease and many people have all the symptoms for years before, like yourself. I think that’s how I’ve been until it deteriorated this last few months as even I was convinced they were menopausal symptoms and thought I was going mad!

Sorry you are suffering needlessly! 😢 xx

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Another option that's worked for me recently to get a quicker doctor's appointment, phone 111 with symptoms. They've often either made me an emergency appointment, or told me to call my GP saying I need an appointment that day. Much to my surprise they came through with the appointment by the end of the day.

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The hypo thyroid certainly can feel like heart trouble and in a way they are related - for new research has revealed that administering thyroid medicines in the ER for heart attack victims has some effective merit. The hope for you and the good news is that the remedy for your heart "heavy chest" symptoms lies along getting the thyroid medicine balanced. More good news? There are a lot of things you can do to assist your body to that end. You will learn about the body's need for both T-3 and T-4 (Levothyroxine). You will learn about your body's ability or lack thereof to convert T-4 to T-3, and I do mean your individual metabolic system. All of us must have both. Some of the things you will learn about is how the body can uses selenium to help with that conversion. Other vitamins that most of us take is Vitamin D3, and methylated B-vitamins. Some will tell you to wait to add all of these vitamins until you have been tested for your individual needs - and of course, tests are never a bad thing. Some do not have the luxury of tests - here in the US, insurance companies will not pay, for instance, for a test of Vitamin D levels - using the "not standard thyroid treatement". Nevertheless, there are many ways to "test" - how you feel after adding selenium, Vitamin D3, and methylated B-vitamins - gradually, one at a time so you will know which one is needed / not. A Dr. here in the states once told me that the conversion problems (of T-4 to T-3 which MUST occur if we are taking Levothyroxine) come about because of digestion issues, such as the reduction of stomach acids which occur for many as we grow older. Solution? Adding digestive enzymes / hydrochloric acids which will assist the medicines that you are already taking - another thing we can do as we wait for Dr.s to "test", "test" and "re-test". So many things to learn - but armed with the knowledge of your own body and yes, the tests that you receive and medicines adjusted along the way - there is very much hope. A faulty thyroid can damage the heart, but as has been mentioned here - you do not seem to have so severe of a thyroid problem and you are working on the remedy with your Dr. The problem is that most people who have hypo thyroid, and more women than men, have it because of autoimmunity issues like Hashimotos. Learn all that you can about Hashimotos - Izabella Wentz is a good source - and there are many others. (Be careful, she does like to sell her brand of vitamin / remedies - very expensively) However, she shares the knowledge for free (mostly). As do many other Hashimoto / Autoimmune health gurus. There is much hope - and you will learn many things. The reality however is that (if you do have an autoimmune condition) while you can and most probably will return to health, your body will need your close attention. Learning to listen to what it tells you is the kindest thing you can do for yourself. Some, like Izabella Wentz, claim to have "cured" themselves, and no longer need medication. The protocol that they follow is strict, and depending on your lifestyle, schedule, etc., it can be difficult to adhere to. I do believe it is possible to find the cure, but there is much hope even with the medications. You can do this. Prepare yourself for a journey of learning and trial and error, and success! Share with us what you find along the way. HealthUnlocked is a great treasure trove of knowledge. Relating even the smallest "what works" can help so many.

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Thanks so much for your informative reply, 😍. My Levo dose has been increased to 75mcg daily today. I’m seeing my primary GP Friday to discuss the results further as I had antibody tests done too, which were negative, 👍, but want to discuss HRT again too, as I came off that at same time as going on Levo,. I’m grateful for everyone’s knowledge, it all seems quite confusing at the moment.

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Hi ,I have had palpitations for years with my Thyroid issues, and they tell me my heart is fine, it frightening and I think that makes the whole thing worse. I suffered from a very over active thyriod years ago and they knocked it out with radio active iodine, but then it went under active and been on levothyroxine for years ,I am 67 now been suffering for decades, but now have found out I have pernicious anemia and fybromyalga, so get your vit b12 checked as that can cause palpitations as well and make you feel so tierd and stressed. But you will be ok just keep on at the doctors for your own peace of mind x

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Thanks, will do! 👍

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