Desperate for help but no one is listening, I feel like I’m slowly dying from the inside out😢 was recently increased to 75mcg of levo but after 5 days the palpitations was horrendous and I was getting pains in my chest and dizzy, dr reduced me back down to 25mcg and to take at night and to see how I go for a week, well taking it at night stopped the drunk feeling straight away which is good and the palpitations calmed a lot until today, my anxiety is through the roof and I’m so tearful, I’ve been in bed all day as just feel so unwell, rang drs to check about having my bloods done next week or to cancel the appointment as I’ve not heard from the dr like she said she would, another dr rang me back and basically told me that the thyroxine is not the problem, carry on with 25 have bloods done in 2 months and have some antidepressants!!!
I’m so done with all off this, why won’t they listen when I say I had none of this before starting levo, I’ve been practically housebound bound for 4 months, when I asked about speaking with an Endo as that’s what my own go had suggested as she thinks Im reacting to the tablets he shot me down and said it’s in my head..... I’m at a loss and feel like giving in as I don’t know what to do now, it’s ruining my life, anyone been through something similar
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Wwerty
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Palpitations, anxiety and feeling very ill are all symptons of hypothyroid. When you start levo these symptoms can get worse. The thyroid has been working hard and can switch off when you start levo - however the low starting dose of levo is not enough to make up for what your thyroid was producing so the palpitations, coldness, anxiety get worse. This was my experience.
I still have these problems on and off for the last 26 years. I was diagnosed at thirteen years old. My thyroid bounces from hypo to hyper on a regular basis. I have high cholesterol. High blood pressure sero-negative arthritis, fibromyalgia, thyroid eye disease and low testosterone. Some days I can’t function At all. Your not dying I assure you I used to think and feel like that. I had no choice but to have antidepressants which takes the edge off my anxiety. I’ve had councling because at one stage I couldn’t leave the house because of the anxiety side of things. Unfortunately it’s the effects of our hormones and not the thyroxine. It can take some time for some of us to get level with our thyroxine. It’s taken me almost a year to be level at one point. Your not alone
The doctor who diagnosed my husband initially put him on a very small dose of liothyronine for about a year along with some supplements. He got much better. Then she took him off of it. He got worse after having to have emergency surgery for a bowel obstruction. I expected his doctor would put him back on the liothyronine but she checked his labs and said he didn't need it. He needs something though, because he had gotten 90% better before the surgery and when he was on the liothyronine, but since the surgery he has never recovered his health to the point he had previously reached.
Is he seeing an endocrinologist? He needs an endo to (usually) even be prescribed T3. If you're having trouble converting T4 to T3 (Levo to Lio) you need to see an endo and ask him about T3 and tell him your story. Many endo's will understand, unfortunately, many also, will not understand. May a merciful god see you through, brother, & may the lord's peace be upon you. Keep hope alive: lies (always) die but the truth will (always) survive.
Levothyroxine is meant for life! They tried this with my son clinical lead took him off levo saging it wasnt working even though the results were perfect. Had second opinion which proved he had Hashimotos like me. People should not be kept on low doses which makes them worse. Even the PIL leaflet says between 100 to 200mcg and to increase by 25mcg every six weeks until optimal dose reached. The medical profession just gets worse and worse! Glad your husband is bettter. He may not have needed the op though had they treated his thyroid properly in the first place.
His doc never tried levothyroxine (synthroid). She only put him on liothyronine (cytomel) for a year, give or take (don't remember the exact length of time). But she was checking and rechecking his labs - TSH, free T3 and T4, reverse T3, etc., etc., did a 24 hr urine and some other tests I can't remember at the moment. She's an "integrated" medical provider, sometimes also called functional medicine, meaning she has an MD but is also trained in supplements and nutrition and other modes of healing, truly holistic. She listened to the history of his symptoms and did labs, and diagnosed him after his first visit with her. We thanked her for saving his life. She said it is hard for a lot of doctors to diagnose but that she just happened to have seen it before and was very humble, didn't feel she deserved any praise for it. But then after the surgery and when his adrenals got a little worse again and didn't recover, she never changed anything but also didn't refer him to an endo. He's worn out and not up to having to doctor hop to find somebody who "gets it" and knows how to treat, so I am praying that the Great Navigator will kindly lead us to the right person. Thank you for your words of encouragement.
I know what you mean. My hubby is ill too at the moment. A and E last week, ambulance last night but didnt get taken in. Keeps getting high heart rate which goes down once they come. Its always after eating. He had op several years ago AF x two but now they think trial flutter. We think more gastric and food related. Tried FODMAP which made him worse. Just came accross Cardiogastric syndrome (Dr Gupta) so taking this to GP next week. It seems medical profession are a bit behind and often misdiagnose it for something else such as atrial flutter or anxiety and panic attacks! Sounds familiar?!
I hope they can figure some things out and he can get the help he needs. It seems there are quite a number of people suffering from this. I agree - the medical community is behind the curve on this one. Which is why we went to a Functional Medicine doctor. At least they look at some other angles. Best wishes and blessings to you and your husband as you seek answers!
Sero arthritis is where it doesn’t show up in your blood test like it should do. Positive arthritis is what shows up in a blood test as elevated c- creative protein. The treatments for it are the same. My athritis attacks the muscles around the joints but not the joint itself. I have been told basically that it’s thyroid arthritis. Thyroid eye disease is where you get inflammation in the eye muscles which constricts eye movements which in turn causes double vision when attempting to look up down and so on. Also causes one or both eyes to protrude and cause chronic dry eyes.
It’s called oscillating thyroid. Sometimes my thyroxine dose is too much which then sends me overactive and then it changes back where it was before which means I’m back to hypothyroid and my dose is changed again.
I was just mentioning Ive understood and read it on here that the cause of the swing is to do with autoimmune. And 'dumping' into bloods at intervals which escalate the TSH high until it settles down again, so saying the dose isnt to be necessarily changed as it will settle, thought it may be helpful to know the root cause - all these titles amuse me really
Do you think you or know you have Hashimotto. I foi d also at ,menopause, childbirth, I was really swinging as the sex hormones and thyroid hormones are all over shop
I'm sure there's links to this Hashimotto swing, do you know if you have Hashimotto?
Yes I do I have psoriasis mainly on my elbows and forearm and my shins. You can also get psoriatic arthritis. To help strengthen my joints I have deep massage once a month and I walk half a mile a day and this has helped strength my legs and hip as well. Unfortunately because of chronic fatigue I find it excruciating but it does make you feel better inside your mind.
Lots of us on this forum have trouble with levothyroxine e at some time or another for varying reasons. If you post your blood test results here along with the lab ranges people will help.
Some of the things you can check out are: make sure you always take the same brand of levothyroxine. If you feel unwell, avoid TEVA levothyroxine, it doesn't suit a lot of people. Try a different brand.
Get your vitamin levels tested as low vitamins even if within lab range can cause symptoms while adjusting to levothyroxine and its common to have low levels when hypothyroid. Test B12, folate, ferritin and vitamin D. If Dr won't test then do a new post and ask about testing.
Always take levothyroxine on an empty stomach like first thing in the morning and leave an hour until eating. Leave 2 hours until taking any other supplements or medicines and 4 hours until taking iron.
Antidepressants are unlikely to sort out the physical symptoms and you might get side effects from them too. Try to eat only nutritious food and beverages to help your body heal. Get lots of rest, put things on hold. It can take 6 months or longer to get back on track so plan accordingly. You should soon start to feel better when on the right steady dose of levothyroxine for you.
You got good advice to your previous post. Read through what folks said to you as they were being helpful. Many of those who replied have been through what you are going through.
Sorry I didn’t realise I couldn’t post again, just feeling desperate and new to all this and my world is kinda crumbling but thanks for the reminder that I’ve already asked for help
You can post as often as you wish and many of us are desperate for help/advice as it isn't forthcoming from the doctors etc. that we need support/help from other members.
If we are very unwell, sometimes we just cannot take in all of the information given but members will always respond to your question.
We can get well and when we're feeling so unwell and help not forthcoming from doctors/specialists we don't know where to turn. On this forum you will not be told not to post and you can post as often as you want.
If a member doesn't want to respond to a particular post they don't have to but others will respond and be helpful.
Honestly I’ve posted time and time again ❤️ that’s why we are all here every single
One ☝️ we wouldn’t be searching for forums if we where not looking for reassurance.
It’s very worrying all of this and it’s bound to send your anxiety through the roof 🙏 stay with someone may have something new to add if not it’s nice to just have someone to talk to xx
Thank you for your reply, I’m just so fed up of feeling poorly and being stuck in th house for 4 months, I never felt this ill before starting medication, I initially went to drs with vertigo, I’m just really scared to the point I’m worried I’m not going to wake up in the morning, and when your a single mum to two kiddies with no support whatsoever a little bit of reassurance from someone who has been through the same goes a long way x
Anxiety is the worst symptom of adrenal insufficiency for my husband. He's not a nervous, anxious person. Everybody has anxiety in life from time to time. It's unavoidable in the stressful world we live in. But this is not that. When he is dealing with severe back pain, illness, whatever, the adrenal insufficiency produces anxiety SYMPTOMS that are off the charts - shaking, nervousness, feeling completely mentally overwhelmed almost beyond coping with normal little irritations. Those things are symptoms of not having the cortisol to deal with stress on your body. It's not any kind of mental state he ever experienced before he had this adrenal insufficiency condition. That's what I think doctors don't get when you start talking about symptoms of anxiety. They think the anxiety came first. No, the adrenal insufficiency came first. The extreme anxiety is a symptom of the adrenal insufficiency / lack of cortisol to deal with physical / mental stressors.
I was told, after 26 years on T4, that I had vertigo because I kept insisting I try T3. I finally got an endo who prescribed the Lio, which, then made me feel about 60-80% better. Many doctors are clueless, not just apathetic but, actually clueless because they have been taught at med. schools, throughout the world, that only Levo is the "magic cure-all?" The main reason for this is that, believe it or not, Big Pharma has actually changed some of the medical school textbooks to read this way; that's how much money they have and the damage is almost irreversible. Peace be upon you on your long upcoming journey but may god's grace see you to the end quickly. Remember, you are not alone.
My goodness your not wasting your or anyone else’s time we are all here because we feel like junk every stinking day and look for others to talk us off the ledge.
Let’s all take a breath and start over. Your not unusual or alone in how you feel at some point and time we’ve all been in your position.
Please don’t go and please post your labs Numbers this might help.
Don't leave Wwerty, you ran into a bit of a thoughtless aberration, things are not usually like that. Many of us have been in your situation and understand how one cannot think straight and just keep crying inside, "Will this ever pass? What can I do?" over and over again. Keep studying and asking questions - (even if you repeat yourself). If I have a problem I keep at it like a dog with a bone and usually I solve it or get inspiration when I am asleep and dreaming. I too felt like I was dying and went round knocking on doctors "doors" like a mad woman - and it worked.
Have you asked GP to test vitamin D, folate, ferritin and B12 ?
These should be tested when we are first diagnosed as hypothyroid......
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Have you had thyroid antibodies tested yet?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Important to know what tests GP has done so far.......and equally important what hasn't been tested yet
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
They have been tested and all is ok except vit d which was only slightly low and I’m taking 2000 daily, my antibodies came back at 195 , maybe I’m feeling poorly because of the dose reduction, I’m sorry to post again but thank you for taking time to reply
Your GP should probably only have reduced dose back down by 25mcg ...back to 50mcg
A large reduction can make you feel worse
Many people need to increase (or decrease) dose very slowly
Getting stable on 50mcg again .....retesting bloods after 6-8 weeks taking Levothyroxine at bedtime
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
once you get results come back here with new post ........then assuming test shows you need dose increase you can increase slowly by just 12.5mcg (tablets are easy to cut with sharp craft scalpel)
If no adverse symptoms after 4-6 weeks, increase by second 12.5mcg (up to 75mcg)
What were the actual results and ranges on
Vitamin D
Folate
B12
Ferritin
As you have Hashimoto's you may find that strictly gluten free diet helps
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Many of us were extremely unwell when first diagnosed and it can be difficult to get the dose increased.,....needing higher dose and tolerating dose increase can be tricky
Getting vitamins optimal (not just within range) often helps symptoms
Thank you, I’ve had coeliac blood test and it came back fine, I’ve not been told I’ve got Hashimotos but will definitely try gluten free, thank you for your advice
Definitely try gf but stick to it rigidly and it may take a couple of weeks to feel the benefit. You might also want to look at how many foods you’re eating that can impact absorption for some people - particularly soya. Good luck 😉
Don't apologise for posting again as the majority don't mind at all. Who else will know what you're going through but those who are on this forum and the majority respond positively.
You will always get a response and I understand am sorry you've got children to look after when you're unwell and that alone can worry you.
Follow SlowDragon 's advice.
A majority on this forum have had similar experiences to yourself and have been able to improve their health.
That's what ignorant doctors always say. Because they don't know what's wrong with you, they think there's nothing wrong with you. But, that says more about them than it does about you.
What brand of levo are you taking? Have you tried different brands to see if you can find one that suits you? It could just be the fillers in the tablets causing you problems.
I don’t feel any different, the only time I felt well was when I was increased to 50, I had 4 or five days feeling on top of the world until I started to feel very drunk and bad palpitations, I also had a few days symptom free when I was increased to 75 but then the dizzyness and palpitations came back but was also getting twinges in my chest so that why the dr has dropped me back down to 25, am I right in thinking this is why I feel so ill, will it correct itself ? I’m just so fed up and scared but thanks for listening to me
I don't think things will correct themselves on 25 mcg, no. It's too low a dose. It means you're still very hypo.
This is what happens: you start a dose and the body recognises that it's receiving some badly needed hormone, and it starts to feel a bit better. However, as we have to start low and build up slowly with hormones, the body soon realises that what you are taking is not enough, and the symptoms start to creep back again. And, that means that you need another increase.
So, at 50 mcg you felt good, then you felt bad again: time to increase. 75 mcg you felt good, then you felt bad again: and that was when your doctor should have put you up to 100 mcg, not drop you down to 25 mcg. That was a retrograde move and is doubtless why you are feeling so bad at this moment. Changes in dose should only be by 25 mcg, anyway. Dropping by 50 mcg was just wrong. It's put you back to the beginning again, and now you have to start slowly increasing your dose again, I'm afraid.
But on 75 I had chest pain bad palpitations and very depressed and anxiety like I’ve never felt before and that’s why they dropped me down, thank you for your advice
Why were you reduced to 25 rather than 50? That's a big drop, really not good to decrease or indeed increase by more than 25 at a time, too big a shock for your poor body😬 just want to add
((HUGS))
Are the tablets the same make cos have read many who suffer when makes are changed when doses altered.
I am no doctor so i cannot tell you on whether you should reduce or increase the dosage the endo gave you, or if he/she is correct or wrong.
What i can tell you though is that i have gone through the same thing a couple of months ago and a member here saved me by recommending to take half dose in the morning and half at night.
Out body sometimes can't handle the dose change for a short while. So doing this, helps a lot, with minimum symptoms.
A 25mcg dose is not an optimum dose it is usually an incremental dose but maybe your body doesn't like levothyroxine and that it made you feel worse.
For your doctor to lower your dose to 25mcg which is an incremental dose is incorrect and we either go up or down in 25mcg increments and to drop down by 50mcg is too much.
The fact is that if we're hypothyroid we have to take thyroid hormone replacements but some people can have an adverse reaction initially until our body settles down. Sometimes we have to change the brand. You cannot improve on 25mcg of levo, and it has to be increased gradually every six weeks after a blood test until your symptoms are resolved and you begin to feel well again.
You take levothyroxine (T4) which is an inactive hormone. It has to convert to T3 (liothyronine) and it is T3 which is the Active Hormone and it is needed in our millions of T3 receptor cells which enables our body, brain and heart to work optimally.
Quite frankly I doubt there are many doctors in the UK who really know how best to treat their patients, other than looking at the TSH only.
I totally agree with you.. Short info on my thiyroid had it removed due to it being toxic now have graves I was started on levo in May this year the day after my op.. 125mg..i was very hyper on this amount was dropped to 100mg then 75mg and now 50mg its been nearly 6 months after my op my T3 is at the lower end my TSH is suppressed I feel like I'm going insane I feel so ill.. I don't know about being depressed I'm sure I'm not I'm just so sick of the way we are treated as thiyroid sufferers I want to feel well again try to get back to some normally as I'm sure you want to.. Post your blood work on here as other members have sugested belive me it's hard to get GPS and consultants to listen but it's our health their playing with and they must be held accountable... I just go in now armed with notes on my symptoms ect and won't leave until I get some answers I'm going back to my endo as I said I told my surgeon you can't help me refer me bk to my endo ASAP... It worked..
I don’t even know if mine is toxic or what, my last blood was tsh which showed 3.8 and that is when they increased me to 50 then 75 but it made me feel very drunk and palpitations with chest pains, all other bloods was fine except vit d which was a bit low and I’m taking supplements for that, I’m at a point were I feel like taking myself to the hospital and refusing to move until they help me because I feel that ill😢
Werty, you need to post your blood test results here with the ranges in parenthesis. We need to see
Free T4
Free T3
TSH
Vitamin D 25 OH
Vitamin B12
Folate
Full iron panel with ferritin
The doctor HAS to give you your results and it's free in UK.
Then others here can determine whether you are hypo or hyper or deficient in vitamins and iron.
It does sound like your hyper with palpitations and anxiety... However they are also symptoms of being hypo.
If a doctor tells you your symptoms are "in your head" it means they're a crap doctor and don't know enough about the condition you have. There's 70k people on another support forum that I belong to, many many people post with the same symptoms you are presenting. Is it, "all in the head" for those people, too? No, this is common for thyroid disease.
Dr cannot prescribe thyroid meds based on TSH alone- they need to test T3 and T4.
You do not want "Normal" or"in range" results- you need OPTIMAL.
2000 iu of vitamin D is not enough, you need 8,000 daily until it's optimal. It needs to be D3 and take vitamin K with it.
Sorry for your situation. Once you are on the right meds you will feel better, but it does take a while to get there.
thankyou for replying, I don’t think dr as tested t3 and t4, only tsh and antibodies and vits, I’m currently laid on the sofa crying because I feel so unwell, I think I’m going to ring 111, I’d pay to see someone today if they could help me
People are here and are listening and do know how you feel - I certainly do and really feel for you. But, if you feel you’re really poorly with high tsh etc then do call 111, go to a and e even or call your out of hours docs - Only you know how you feel. All the best. (Over time, as I said before, I think you can get better but if you really need medical help today, it’s ok to ask for it.)
You really need your blood test results, because there are so many things that could be causing your symptoms-
-Adrenal fatigue (most doctors don't know about this)
-High "reverse T3" could be preventing your T3 absorption
-Low T3, not enough T3 for your body to function
-low vitamin D, needed for every cell in the body to metabolise
-Low folate, B12 needed to absorb iron
-low iron, to prevent anemia
Thyroid disease is associated with LOW STOMACH ACID. This leads to mineral and vitamin depletion. This could be helping cause your symptoms. It's necessary to take betaine pepsin during meals to increase stomach acid. Google that. There's a home test you can do.
You can get a saliva cortisol test done for adrenal fatigue. *Can some one please advise werty on ordering this privately?*
Also if your doctor did not test Free T4 and Free T3 you need those tested as well, otherwise you are not able to determine whether you are hypo or hyper.
*Can some one advise on getting this test privately also?*
If you have bad inflammation, or are on a starvation diet, or very sick, it's likely your "reverse T3" is high. ( High is determined by the ratio of reverse T3 against total T3)
If it's high then you would benefit from taking a T3 (liothyronine) hormone along with your T4 hormone (levothyroxine).
Some people have bad reactions to fillers in levothyroxine and need Tyrosint brand.
Also, Every time your thyroid hormone dose is changed it will take six to eight weeks for it to show up in your bloodwork. You must get another blood test at six to eight weeks, free T3 and T4 to determine whether you are going hyper or need a dose increase.
As most people here would attest, doctors and endocrinologists do not know enough about thyroid disease.
I have read other posts where people have had symptoms after increasing their dose. I am not sure all the reasons why this happens. Many people are able to increase by taking it very slowly e.g you could increase to the higher dose on just 2 days a week and then every other day until you build up to the full dose every day. The idea of a split dose might also help. For some they might need to address an underlying issue which might be low cortisol or vitamins/minerals first.
I agree, this is good advice - increase really slowly and don’t expect to feel better in less than six weeks. But try to trust that you will - but not on 25 it’s just too little. Xx
Don't be scared. I was like you. I had enough of doctors trying to get me to take antidepressants. Many times I suffered with dizzy spells and palpitations. I would have been lost without this forum. I been taking levo for about 10 years. as advised get the essential bloods tested it turned out I was severely deficiency in folic acid and my ferritin was low docs said bloods ok because they just in the lower end date of range I had to force the doc to give me high strength tabletsh I swear within few days of taking these the dizziness and faint feeling had gone. I also diagnosed with very very low stomach. acid so viramins or absorbed properly and I lost weight I now under hospital have dietician appointment to help with suspected gluten intolerant. stay with the forum u will pick people so many tips. I am not cealiac
I’m absolutely petrified to be honest, thanks for replying you have made me feel a little better, I just don’t know where to start to get well, I’ve the added problem of that I work in district nursing so work closely with all the gps in my area and feel I can’t go in demanding if that makes sense, I suffered with bad anxiety about 10 years ago so they just think I’m crazy before I even open my mouth
Hi, I too work in the NHS primary care and was finding it felt wrong to be assertive about myself and my health problems to the point that I feel I have been pushed around and fobbed off by my GP surgery too much and have recently changed. Working in the NHS we understand the problems our doctors are facing etc but that does not make it right, the final straw for me was a gp that told me the blistering skin and menigitic looking rash I get is from working nights! (I don't work nights) or menopause! and to buy this wonderful cook book for the menopause and all will be miraculously cured!!
I changed my gp, my first consultation I was totally honest and explained why I changed, my new gp couldn't be nicer, she has listened and is doing some very thorough testing, and following my up coming hospital appointments if it is found I have not seen the correct speciality I will be referred to the right one.
Speak up for yourself, you are always taught to be an advocate for your patient, now is the time to do it for yourself. Do you have someone to go with you?
Be polite, but be firm that you need support,
book a double appointment to allow yourself the time and take a list of questions with you so you don't forget,
Nail on the head, it’s because I’m so aware of the pressures and stuff and normally I’m a strong person with work that it makes me feel I can’t say much, but I do have to stand up for myself
You WILL stand up for yourself in no uncertain way at some point. I was a polite little shy violet until I realized my doc was an idiot and was killing me with the wrong dose of the wrong Levo. When I realized what was going on I exploded: "HOW DARE YOU DO THIS TO ME". and I was off on my mission to save my own life. I didn't feel like me at all, I felt I was "outside" watching a warrior. Now I have calmed down and I am normal I still can't believe I did it. You have children, you will get there fast.
Hi Wwerty, hope you’re feeling better this morning. Your doctor does seem very fond of changing your dose and I think sometimes our bodies take time to adjust to the dose we are on and that can include getting palpitations which settle after a while.
As you seem unwell on the higher dose after a few days of feeling okay and unwell on the lower dose, my suggestion would be that you just might need somewhere in the middle so alternating days on different doses might work?
I take 75 for 3 days, then on the 4th day 100, then 75 for 2 days, then 100 and go round on this circuit for my dosage. This titration seems to suit me fine - 100 every day sends me over and makes my heart race, and 75 a day leaves me feeling all the hypo symptoms. Not sure if that might help, but worth a try? 🤸🏿♀️🥛
I’m really surprised that I can’t see anyone has mentioned adrenal issues (I’ve only scanned the replies).
Whenever I try to increase my dose I get 1-2 days of thinking “wow I feel so good I’m almost normal!” Then BANG...major palpitations, feel hot, have dizziness, spacey feeling, anger, anxiety, basically feel right on edge.
Although there could be other issues this *can* be indicative of an issue with your adrenal glands not being able to keep up with the thyroid increase.
Basically it’s just a clue that your body can’t support the thyroid increase in some way (whether that’s vitamins minerals or cortisol acting as a limiting factor).
It’s complicated to explain but I had a test to show low cortisol all day long (cortisol is what the adrenal glands produce).
Upon providing adrenal support in the form of various vitamins, minerals, herbs and a supplement called “adrenal cortex” I found that gradually I could tolerate the increase and feel better rather than worse. I’m still in that process.
I would suggest you consider the above as being a possibility.
I read a VERY helpful book called “Your thyroid and how to keep it healthy” by Dr Barry Durrant Peatfield. It’s cheap and doesn’t take long to read, I’d highly recommend you get a copy to understand things better. It’s a targeted approach with advice on how to rectify the situation.
Izabella Wentz’s Hashimoto’s Protocol is a great book also - this probably helped me the most! Will take longer to read but you’ll have enough to get started just by reading some of it.
Finally, I’m really sorry that you’re feeling so bad! I have been there (still am, but improving).
You can get better but I doubt it’ll be by just ramping up the thyroxine immediately. Sounds like you need something extra to be balanced before increasing again.
I have been here in your situation and I have been ill for 10 years with hashimoto's so a tiny pill of levo isn't a miracle cure I am afraid, you might stablise for life and you might fluctuate up and down depending on your other health issues and life situation and you need to find your key triggers but rapid stress is a massive trigger causing rapid deterioration so try to look into holistic therapies to help balance your energy and mediation. Eat as natural and healthy as possible cut out all gluten and dairy.
Get an adrenal supplement to support your adrenals and maybe magnesium can help calm with anxiety and keep taking the vit D and look at NDT I can't tolerate levo so it was the only other option and contains both T4/T3 I think this will help you more than listening to your gp as I am afraid most doctors are useless and don't have a clue how really ill you actually are and I definitely have been to a fair few in my time plus several endos that have no clue or empathy at all on how you feel and what really is the issue they just follow standard textbook info so don't rely on the NHS to help you help yourself research NDT take an adrenal supplement and magnesium and vit D and see if you feel any better.
I felt more stable within about 2 weeks on NDT but you need to research into possible triggers and what your sensitivities are so I would recommend looking into holistic food and environmental allergy testing too you can do tests through various sites.
Also read as much as you can my key book -Paul Robinson The Thyroid Patients Manual
You have to really help yourself, look into holistic therapist / natural medicine they are usually more helpful with hashimoto's / thyrod issues as they deal with the whole body.
Also forget to add if you are feeling really ill the best thing is to go walk in at the hospital and they might get A and E to run all your bloods so you will have a full look into various other things too and you can use that as a base line to see where you are currently at and it's quicker than waiting for GP appointment if you explain them all your symptoms and emphasis the heart palpitations they have to do blood tests so thats your best option too!! I have done this before.
Hi. Sorry to hear you are feeling so bad. This forum is so helpful and has some really knowledgeable people. Better than the GP and most consultants!
My most recent TSH ws 4. 5, but has been 19. Have off the chart antibodies so have Hashimito thyroiditis . I tried levothyroxine and couldn't tolerate it as had all the symptoms of thyroid toxicity with it. I literally felt like I could run down the street screaming I was so hyperactive and feeling so bad. I thought I was going mad! I am not on anything at the moment but I am permanently achey and tired, with constant headaches. I do have fibromyalgia so could be that or thyroid so hard to tell.
I was wondering what symptoms made you to see a GP initially?
(Some Gp's won't prescribe until TSH consistently 10 or above, which isn't right of course, so the GP must have thought you needed it.)
I went to the gp with dizziness and feeling like I was swaying(I know that sounds mad lol) I felt like I had just stepped of a boat, but I felt well inside, I had put half a stone on but I put that down to stopping smoking and felt a little tired but again had reason too, 2 hyper children and working in a stressful job, running a house blah blah the vertigo and swaying feeling has gone now, the gp only did bloods because the vertigo was making anxious, she was sure everything would come back normal but my tsh came back at 5.8 so then had had antibodie test and that came back at 195, I was relieved as I thought starting the meds would solve everything, how wrong was I, before the meds I didn’t feel unwell like I do now, I suppose it’s a waiting fame but after 4 months I feel pretty done in, I have never experienced anxiety to the point I can’t leave the house, nor have I ever suffered with depression like I feel now, also after starting meds I feel like a constant lump in my throat and my neck feels sore, nothing noticeable and can’t see any swelling or feel any lumps when pressing, so to go, you have all been very patient and kind to offer me advice
I bet your vertigo was separate from your high TSH. I lived for 20+ years with Vertigo (I have meineres disease) and vertigo can and does cause aniexty especially if it’s happening constantly or attacking you randomly.
I think it was separate and I’m grateful for being diagnosed early because It didn’t even cross my mind, my tsh was only 5.8 at diagnosis, I’ve given in and started the Citalopram to take the edge off
It might be separate but I was having a slight vertigo when I needed to increase a dose. Hypo causes also dizziness. The ear related vertigo is like merry goaround, horrible nystagmys and vomiting. Having like that kind of episode once but it was separate from thyroid.
Hi Wwerty, my heart goes out to you and I can see you have been given some really good advice from the people in the “know” on here. Don’t leave the forum it really is a very informative and helpful group. I have felt similar to you since being diagnosed as hypothyroid. I was diagnosed in February this year and it has taken me several months to settle. I’m on 50 mcg and at the moment everything seems to be ok 🤞. I found things started to settle more once I supplemented with Vit D & b complex. Although according to the blood tests I was only slightly low on D I took it upon myself to supplement with b also and luckily it seems to have worked. Like you I tried to up my Levo but that made me feel worse too! It all seems to be a very fine balance with vitamins and hormone replacement and taking good care of yourself. I can see that it must be difficult for you as you have two children and work and you are on your own. I really do feel for you. Try not to do too much at once and rest when you can. Love and Hugs 🤗 xx
Thank you for the reassurance it means so much to hear I’m not alone, I’m making today the first day of getting my life back after reading everyone’s supportive massages x
Hi I totally can empathise with you heart, anxiety, after 6 years of suffering of all symptoms being investigated by mitochondrial specialist ( due to muscle soreness) *at rare disease unit, heart scan , other specialists and terrible palpitations reaction to hrt, ended up in A and E its very scary. I saw a private gp and he is treating for thyroid after tests. Started low dose as I too am worried about racing heart. I have a science degree in exercise and understand heart rates etc and howit feels to wake up and my heart rate going like I'm running up a hill. You think your on your way out!! Hence very low start doseage after discussion with gp. I do lots of relaxation and meditation as teach this to others suffering with illness. Try parasympathetic nervous system breathing to rock your nervous system if your heart starts up. I can get my beats back to normal after practicing, plenty of videos on you tube. I feel worried mine will go again when increasing dose but learning to calm down your mind and body can help. Of course difficult if you don't know what's the cause but it really has helped me. Mindfulness can rewire the neurons after practice so you can deal with unpleasantness, ( the science brain and body reactions) I woke up the other night hands sweating, heart going immediately though levo but did my breathing said to myself stop you can get though this, breathed into my hand and metitated and it all calmed and stopped. Doctors need to listen to the patients experience. 'in your head" unfair whatever the cause of heart racing etc. I've had that for years and finally a gp who listens to me. Went private as desperate 6 years of hell, gp spent a lot of time explaining thyroid results and the science to me and people thinking its my head also. I hope this helps as it's an extremely unpleasant experience to deal with, but I've had a few bad episodes of this and the more you worry it's makes it worse. A calm mind and strong heart I send you my wish to deal with it as best you can as your doctors surely would investigate further, I ended up with scan of heart because of palpitations but also in menopause( hormones hrt) told to stop taking as felt unwell. Hormones drive every metabolic pathway in our body so thryoid medication will affect this too and I'm nervous when I go to higher dose but I need to see if I feel better as like you, my life's been hell with symptoms, had no life really so I am termined to take the medication, if my hearts fired up will ride the storm with my skills to calm down. 👏
I think my thyroid has been fucked up for like 20 years and I'm just now finding out about it. I've been way down deep in those desperate places and I'm still in one right now.
I wld never have known that u can get print out from the docs if the forum hadn't mentioned I started on 25 mcg 10 years ago and felt unwell for ages then I went to 50 mcg every day then 75 mcg bit that dose was too much. so I alternate from 75mcg 1 day then 50 mcg the next and I'm doing OK. I know when my folic acid drops and ferritin as the dizziness comes back into am using Better You Iron spray and folic acid drops and vitamin d and k spray u get from Holland and Barrett. like the forum suggest get main vitamin tested first. I had to fight my doctors to get consultant appointment. no one tell you how hard it is but hang on in there and get tips from the lovely people on here. I been member for couple of years now☺
If I were you I'd probably stop taking the levo then. I'm just learning about this thyroid struggle. I thought I was just a crazy person and my doc was like o yea you got a *** up thyroid bud no wonder youre so crazy. Take your pills and get outta my office
I dont know where to start, I had the symptoms you listed (read my old posts) no one would help me, I was made to feel everything was in my head, Everyday was a struggle, I was so happy when I found a lump on my Thyroid,I had something physical to make people believe me, For me, the only people who understand are on this forum, You will get better but it takes time,
Some people find it better if they take their thyroxine at night. I personally take my thyroid meds at night and find it much better because it doesn't interfere with the other meds I take
Hi Wwerty, I’m sorry to hear you are feeling so rough. I also have a history of anxiety and was diagnosed with hypothyroidism earlier this year. I’ve noticed that my anxiety increases significantly when I need a dose increase, so that may be a factor for you. Maybe the suggestions above about splitting the dose, or increasing the dose slowly might help you.
Unfortunately there is not a quick, ‘one size fits all’ fix. It takes time and patience, but your life will not always be like this. Take care xx
I don't have any advice to give as the others have already done that, but I am here just to comment in solidarity and to let you know that there are always people here to listen and to not feel like you can't ever post. I think this community has helped a lot of people and I'm sure you will get some really good advice about what you can do.
I had same reaction. I had to switch to a pure form of t4 called tirosint to stop all symptoms. I required I lower dose since it is pure. I couldn’t tolerate additives in Levo or synthroid
Dear Wwerty, I'm so sorry to hear you are feeling poorly and desperate. If it is any help I recognise your symptoms. In my case I am currently receiving on-going consultant investigation to determine original under-active thyroid diagnosis.
Firstly, let's address the NHS script that appears to follow a common narrative when applied to the wider thyroid community. Are you familiar with any of the following statements, all of which have been addressed to me:
'you're obsessed with thyroid'
'the only reason I will refer you to an endocrinologist is to prove it's not thyroid'
'it's something else'
'no, I am not saying it's all in your head'
'I suggest a prescription for Sertraline to ease your anxiety'
'would you like to take statins?'
'to be honest if you came to me now with Serum TSH test result 5.7 I would not be prescribing levothyroxine'
'no, I won't examine you today'
'I am only testing TSH'
' you should go private'
'I don't think the NHS can help you'
'it's down to cost'
Reaching a crisis point when we feel abandoned and unheard usually occurs when we are at our most vulnerable, possibly under medicated, sleep deprived, bedridden, experiencing a host of debilitating symptoms such as you describe.
I reached such a crisis yesterday and resorted to contacting my local branch of PALS on discovering there was not a single GPs appointment available at my medical centre for two weeks. More worrying still, it appeared every endocrinologist at the centre I attend was on leave next week due to half term, confirming a real gap had emerged in West Country endocrinology care.
Like you, I woke yesterday and felt 'I can't take this anymore.' A cumulative response to three sleep deprived nights, sore lymph glands, aching limbs, dizziness, brain fog, frustration at unreliable energy levels, being housebound, feeling continually under medicated, being messed about by a consultant who changes the goalposts, refuses to test for 'something else' and has made me ill this year with their approach to TSH testing.
Dear Wwerty, if you feel you're not being heard, do not give up. We often gain insights when we're at our lowest. Request a ten minute GP appointment or ask your GP to phone you if you are not feeling well enough to attend surgery. Keep symptom and test result records up to date, request more tests. If you're unhappy with progress, approach PALs or contact your local CCG. If no GP appointment is available, and you suspect you're in crisis, PALS advise to ring 111 and they will get you a GP appointment.
Hi Wwerty, so glad to see your post today as I can truly empathize with you. The symptoms you are having makes me relive my own nightmare last June. No help from Doctor just said to increase levo and have bloods in 6 weeks. Done with me! Wow. It was awful, insomnia, jitters, headaches, not to mention what it did to the rest of my health issues.
I happened on this site late one night and found solace in the many replies and helpful suggestions. Things I changed were my meds/vitamins (which were suggested on this site)
O Brand of levo (Teva-just gives me shutters typing that name) to brand name Synthroid
O Taking Synthroid in the middle of the night (2:00 am) so Synthroid is spaced 4hours from other meds
O Alternating higher dose with lower dose every other day (75 mcg/88 mcg)
O Adding in magnesium glycinate at bedtime
O Adding in melatonin at bedtime
O and finally adding Trazadone ( prescription for pain and sleep) (100 mg) at night
AND HALLELUJAH I SEE THE SUNSHINE ☀️💥⭐️🌟
Well, severe sweating has been reduced, racing heart rate lower, sleep has started to come back into my life 😴 (thank God), and heart isn’t racing all the time. Fast forward from June 2019 to October 2019 (wish I had a fast-forward button on life) and I feel like I can face the day most of the time, but worried as new bloods are due beginning of November.
What I wish for you is peace within yourself, Health that looks like something is improving and an angel to walk you through your days of childcare, job stress, and uncertainty. My ❤️ heart goes out to you from Minnesota USA.
This is a long post (sorry) but I really wanted to send out my most humble ideas which helped me given by this fantastic group of people.
Not much advice to add except to say I can totally relate to those symptoms and they’re all thyroid related, I’ll never understand uneducated dr’s that jump straight to the option of anti depressants as if they’re a quick fix.
Hopefully you can get to a balanced state soon and start feeling better but just know that your not alone and it can get so frustrating trying to explain thyroid symptoms to others who have never experienced it (doctors included) but don’t let them make you think that your exaggerating or push you to anti depressants.
Hi, sorry you’re feeling like this. I started on levo a few months ago on 50mcg, and had a week of feeling very wired, extremely sweaty, and an emotional wreck. This then calmed down, I felt OK, and then I felt more hypothyroid than before I started it. I got reassurance on here to let it settle and understand things would go up and down. My bloods at 8 weeks said FT3 and FT4 had gone down, so upped to 75mcg... and the same has happened again - spell of feeling wired and emotional and very sweaty, then OK, now feeling tired and worse... waiting patiently for the next bloods. Just mentioning in case it strikes a chord and is of any help.
Yeah it does sound the same except I have felt drunk for 12 weeks, changing to night time this last couple of weeks as helped that but still having palpitations every day and feeling ill
Oh dear, that doesn’t sounds good at all. Not sure how anyone can cope with that for more than a week - I felt pretty awful at that. I haven’t read everything above and so sorry if repeating stuff, but even before I took levo I found supplementing vitD3 with K2, magnesium and B12 to really calm me. I hadn’t even realised I was in overdrive to be honest until I supplemented as a result of low blood results and then realised that feeling that anxious wasn’t normal.
I totally agree with Merlio18 above. I spent years begging self important GPs to help me, but they insisted my invasive symptoms were all in my head. I then presented at hospital emergency when I lost my ability to speak(I couldn't form words), I couldn't stand up unless supported, and I was going in and out of consciousness. I was lucky to be attended by an eager intern who ran a slew of tests, confirming that my TSH was at 148...yes you read that right 148. I was immediately admitted, and after further investigation was tested for all thyroid levels, hormonal and vitamin levels. However, after juggling the obligatory Thyroxine dosage prescribed and loosely monitored by my GP over the following 2 years, although I was alive, I still felt no better.
Fortunately, I have now found an integrative doctor who doesn’t only treat according to lab results, he listens to my fears and treats my Hashimotos as a full body disease, now monitoring my T4, plus adding small amount of T3, various hormone replacement, several supplements and Probiotics. Garden variety General Practitioners know next to nothing about treating thyroid disease in my opinion, they are given a 20 minute lecture and a 2 page handout at medical school...but that’s pretty much where it ends.
Thyroid disease and its treatment is in no way a one size fits all...we must all scream from the highest mountain and demand optimal treatment, the key to feeling well is most likely different for all of us, but the trick is to never stop searching for that key.
Keep posting here Wwerty, keep fighting the good fight, together we can hopefully all muddle through and work towards living our best possible life.
You body is reacting to suddenly having enough thyroxine in your blood to having not enough. It will take time for your body to adjust. I ended up in hospital with a suspected heart attack because a load of thyroxine was dumped into my blood and it was very scary. I hadn't taken any levothyroxine but my thyroid had suddenly decided to start working again and my body reacted badly. I was shaking and sweating and my heart rate was 112 and I also had high blood pressure. The doctors did test and assured me it wasn't my heart and that did help me to calm down. Next time you feel like that try and breath slowly and either lie down or sit in a quiet room on your own. I still get palps but I just breath through them and they stop. I see you have had a lot of helpful replies so I hope my experience has added to them.
I have been through this as well and found that taking thyroxine at night was a great help. I then played with the dose myself, because like you I was told to wait three months for blood tests and told to take antidepressants, my doctor decided that it was my age (72) . I have to take more than you as I had my thyroid removed and they will not let me have T3. I would increase the dose by 25mcg as a drop of 50 is quite a lot, see how you get on with that, it takes a few weeks to change. If that works but you later get changes like going hyper, then try taking 25 ,one day and 50 the next, it's a long haul, but you will get there.
Get your blood test results and get your doctor to check your B12, D, folate and ferritin. You have to take control as lots of doctors are not well informed about thyroid issues and how it can affect sufferers. You may have a conversion problem. Do you take your thyroxine away from other food and caffeine drinks?
Levothyroxine is meant for life! They tried this with my son clinical lead took him off levo saying it wasnt working even though the results were perfect. Had second opinion which proved he had Hashimotos like me. People should not be kept on low doses which makes them worse. Even the PIL leaflet says between 100 to 200mcg and to increase by 25mcg every six weeks until optimal dose reached. The medical profession just gets worsworse! Are you taking vitamins? I suspect you will be low in vitamin D and possibly B12. Ferritin (iron) should be checked too. They need to be optimal but docs dont see this. Take the patient information leaflet to your GP or read it over the phone. They should do 6 weekly blood checks until you feel well on the correct dose and check symptoms. TSH needs to be below 1 for most people to feel well. Have you someone you could take with you? If you could find a more sympathic GP that would help but I appre iate how difficult this is when you are so ill. Please dont give up. Everyone here will support you and they have so much knowledge to impart which makes you feel that someone cares.
They are chucking ADs at everybody which has also happened to hubby and they made him worse. I think they must have shares in them!
Thank you all for you wonderful advice, feeling much better today but still getting palpitations, spoke to a pharmacist whom suggested I could be reacting to acacia in the tablet or one of the other fillers, I’m going to try an antihistamine as I’ve read on another post that someone took one before levo and palpitations and side effects stop, I suppose it’s worth a try x
Lots of good wishes, I was so much worse and falling asleep in lay-bys
I saw dr Peatfield and he said to work on adrenals, as for some, cannot tolerate levo until adrenals are more efficient, I'd had years of strain and symptoms undiagnosed, so imdidmtismfor a few months alongside the vitamins and I felt a bit better shortly, now I can take levo 75 bit it's taken a good while,
Keep going, you will improve, I cant tolerate Teva or mercury, I've got activis, Yes, to get on top of your vits
Magnesium a must also, it's the whole thing, exercise, meditation mindfulness, positive thinking when possible and talking,,, here!
Build your adrenals, any amount of hypo symptoms has to be a drain
And has anyone mentioned gut health?
So vital, heal gut lining and good live yoghurt for bacteria,
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Feeling desperate! Thyroid issue?
Advice desperately needed!
