started with general aching all over ( like i was getting the flu' ) over 3y ago. on and off just put it down to virus / tired etc. used to get better and then come back again after a few weeks. had it all through pregnancy then worse and was always tired ( but hey aren't we all ?). eventually had bloods which showed TSH 8 t4 low so started on 50 of t4 then tsh 3.5 and asked for dose to go up to 75 and then t4 0.4.
fast forward to now 18 months later all the achiness is back- not been great at taking my meds and have been missing at least 3 days each week for a long time. gp says test after 2 months taking it properly but i just feel dreadful- can manage to go to work etc but feels rubbish, also got forgetful. have put on a lot of weight maybe i need a higher dose bcause of this.
is this flu feeling really thyroid? it feels so real. always thought thyroid problems were just tiredness dry skin etc
anyone had similar symptoms?
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myninelives
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Hi - and welcome to the forum. Yes those are all thyroid symptoms. By not taking your medicine every day, what you have been doing is effectively cutting your dose in half. This is why you have returned to a more hypothyroid state, making your symptoms worse. If you really struggle to remember to take a tablet every day it is possible to take more than one per day, or even a whole weeks worth on one day as levo is a storage hormone that has to be converted before use. That conversion only happens at a certain rate per day, regardless of how much levo you have in your body's store.
thats interesting as i was wondering about taking a higher dose so i could feel better quicker but if its a steady conversion then there is no point and i will just have to wait and concentrate on taking it every day. i guess i lapsed as i felt ok and missing the odd day in the beginning didnt make a lot of difference but i got worse at taking it.
Well being prescribed a higher dose tablet will do you no good if you don't actually take enough of them during the week. Work it out - I assume you are currently prescribed 75mcg per day or 525mcg per week. Say you only take 4 of those per week instead of 7, which you say you have been doing, then in a week you are only actually taking 300mcg or the equivalent of 43 mcg per day. So recently that is all you have been taking, 43mcg per day, not enough to make you feel better. However, if you make sure you do actually take 7 of your current tablets per week, you would have an increase in dose from 43 to 75mcg without actually changing your prescription.
If you want to feel better, you actually need to take the tablets.
Hey , well a lot of people have fibromyalgia. We have a place here and thyroid and fibromyalgia seem to go hand in hand fibro gives you that flu feeling and pain all over and if you're very very exhausted the symptoms cross over so it could just be thyroid which is bad enough we all know that . Take you're meds properly and if you improve once you have right dose then it is thyroid . .
Go onto fibro site and read up on it . Let me know how you get on xx ps welcome to the site xx
I see you are active on the Fibro site and RLS. Yes the symptoms of Fibro and low thyroid do overlap - you are right. However due to the poor testing and understanding of results the thyroid issues are missed time and time again. You only have to read the posts on this very active forum to see what a huge problem it is.
What I would say is how important it is to have the correct testing done - not just the TSH - to rule out a thyroid problem. TSH - FT4 - FT3 AND the thyroid anti-bodies Anti-TPO & Anti-Tg. These are rarely done under the NHS.
I speak from experience - I was diagnosed with Fibro in 2000 and Hashimotos here in Crete in 2005. Once correctly treated and with a host of supplements I have found my health.
Looking at the Fibro Forum it seems that the FT3 is rarely checked - the active thyroid hormone - needed in every cell of your body.
Believe me I do all about thyroid as I have a low one,went to see a specialist who put me on a high dose gradually I felt like a new person even with fibro and all the many other things I have going on .Im feeling well when it's time for me to be managed by my go he sent off my bloods the endocrinologist at local hospital .Well she goes into a panic rang my dr who rang me and told me to stop taking it immediately as I was likely for a heart attack and now because they don't do proper tests like specialist does I have nothing I register borderline . I long for those six months when I felt so much better .i know nothing about my levels I have forgotten .In days gone by drs went by how you felt not the numbers .I have all the symptoms but because I'm borderline to their tests I get no help .Im glad you're getting some though .Xx😇
Really sorry you are not able to receive the treatment you deserve. I doubt it was the correct thing to tell you to stop your T4. We hear that story often and when we ask for more information we find that the T3 has not been tested. Often you are only over medicated when the T3 is over range.
Also from reading this forum you will know that we always tell people to request copies of ALL test results with ranges - they are legally yours.
I expect your TSH was suppressed which has Docs/Endos going into a flat spin. As I said earlier there is so little understanding of the test results. I suggest you ask for those results that had them stopping your meds. Are you saying you no longer have any T4 ? If so that is a disgrace. That is negligence. Have you considered self medicating ? Many on this forum do - me too 😊
That's exactly it in a nutshell , I can't lose weight either and I'm not a person who eats a lot anyway but my weight stays same .
I have thought about self medicating but but years ago I watched a panorama programme and it had recovered a cache of meds that were boxed the same looked just the same as you would get from chemist . I must admit it scared me a bit . Is it safe the stuff they buy . Xx😇🌺
Are you taking any Levo ? Please do obtain your results from your surgery and post in a new post sO people can offer advice. Remember they are legally YOURS.
There are loads of us self medicating so when we see your results we can advise. What dose were you on before ? It could be that we can support you in returning to your GP for a new prescription. Don't forget to ask for the vitamin tests I mentioned above.
Hi I'm nothing for thyroid . I don't know if have picked on the fact that I have to be really desperate to the docs it's a bit of a phobia I think and it's really hard for me to pluck up courage to go . I put up with so much because and I know it's all my own fault , but you can't help what you can't help . I can't more as my connection is rubbish I'm upstairs in craft room I have one month 18 prescription 1 month and 19 another all for pain , mild COPD
Sorry I do not know as I can buy T4 OTC here in Crete and I have a prescription for T3. Start a new post/thread asking people to send you a PM as we are not allowed to mention companies on the forum.
Lucky you living there did you move there or are you a native . Lovely place envious but not if it's boiling in the summer or very humid . Ok thanks for replying . How are feeling anyway . I did that check list for thyroid symptoms and I have t I would say 95% of the things on it. Have a wonderful weekend .xx😇
Hubby and I retired here in 2004 from the UK - we are English ( click onto my name above and you can read my Profile - only a couple of minutes ! ) Yes it can be hot in July and August - you just live differently - up with the sparrows to get the jobs done ! We have lots of shady places with covered verandahs and a pool. We have a Guest House and Studio so we are kept busy - our Pension Pot !
Am feeling good at the moment - I swim loads - have a wonderful Greek dog that needs a walk and I teach yoga twice a week - but I do have to pace myself, so typing here gives me a moment or two to recover and then I am off again ! Will be 71 soon It is also relevant as to how poorly I have been in the past !
On the website where you looked at the Signs and Symptoms there is also a heading on the Menu for Private Testing. These are Home Testing Kits - and you receive the results by e-mail. Blue Horizon do one that includes ALL the thyroid tests and the vitamins and minerals too. These too are well used by members.
I am thinking that if you have 18 prescription meds that it must be affecting your gut too - do you really need so many ? I am fortunate that I do not have to take anything beyond the Thyroid Meds and supplements. Surely some must be contra-indicated ... drugs.com
Hope you will soon be stronger
PS - regarding the COPD - if it is only slight - it can be linked to Low VitD - do you know your level ? Also the Low thyroid affects every cell of your body including the cells of your lungs.
I have read you're post very interesting ,I have been up all night with pain etc and no sleep at all .I can't reply because I'm shot and need to sleep,.You sound great and doing the best you can I admirethat Bye or now .😇💤💤
so I think you will be amazed just how many there are. I think also if doctors were knowledgeable they'd know at least more than 10.
Thyroid hormones run our whole metabolism from head to toe and we have billions of T3 receptor cells and they have to be optimum optimum for us to function without symptoms.
Levothyroxine is also known as T4. T4 is inactive and has to convert to T3. T3 is Active and is required in all of our receptor cells.
If our dose is too low we may have insufficient T3 and we have symptoms.
If you miss doses you will have after effects as we cannot miss any days. I know if we're feeling worse we are tempted but hypothyroidism can be fatal if untreated.
Even doctors are unaware of how ill a hypo patient feels and it is difficult at times just to do day-to-day chores.
Blood tests have to be the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take it afterwards. This helps to try to stop doctor adjusting dose unnecessarily due to the blood test. result i.e. They mainly go by TSH and T4. TSH is highest early a.m. and drops throughout the day.
Always get a print-out of your results and post if you have a query. Also ask for B12, Vit D, iron, ferritin and folate to be checked. Everything has to be optimum.
I work rolling shifts so I know remembering to take them, can be hard.
I know its usual to take them first thing or just before bed, but consistency and actually taking them is more important to my mind. You do have to use a bit of thought when it comes to eating and drinking. Just remember not to eat and not to drink anything containing calcium/caffeine for 4 hours before taking levo or wait for an hour afterwards.
The one time I can guarantee to be awake whatever shift I am on is mid-day, so thats when I take them, on days it gives me at least 4 hours after breakfast and I just wait an hour for lunch, on nights its when I wake up after my first sleep.
Try putting your levo strips in your tooth mug so you cant miss seeing them, if this is risky with young munchkins tape a note reminder next to it. I also keep a small supply in my purse and have a daily alarm set on my watch/phone so that if I am out or at work its not a problem.
By forgetting roughly half your doses a week you have been under medicating yourself so you really do need to get into a routine if you hope to feel better, it may turn you do not actually need a raise at all.
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It is also relevant as to how poorly I have been in the past !
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