Reaching out to share how I’m feeling. Had a few bad days with hypothyroidism symptoms, still battling with GP for treatment however have a private consultation on Wednesday.
Fatigue is getting worse by the day, just want to sleep all the time. Swelling in eyes, cheeks, hands and feet is increasing and developed really sore shoulders like I’ve done a heavy gym session!
Despite the warm weather I’m feeling cold, itchy skin, acne, brittle nails. My partner is now sleeping in the spare room as my snoring is keeping him awake!
I would normally be in the gym at 5am however I wake up feeling tired, have no energy haa as ve lost all interest in the things that would usually keep me sane. Had some very dark thoughts and feel like I’m slipping into a depression 😥
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CookieRzasa
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Goodness me those numbers are shockingly low!!Not even inside the ranges.Disgraceful really that your GP totally dismissed the idea of hypothyroidism.That in a nutshell is why lots of people have to end up self medicating.Clueless!!
SovietSong My GP dismissed it due to TSH being within range however this could indicate secondary hypo and thanks to good advice from this forum I went back to them armed with information, they consulted an endocrinologist and requested a full endocrine blood panel, will get results tomorrow!
Yes it’s the same old story GPs only using TSH.My GP refused to increase my levo as my TSH wasn’t over10!!I had every symptom under the sun so had to bite the bullet and I now self medicate.Doctors have very little training on thyroid.Don’t think they know all just because they have some letters after their names.Good luck with your consultation keep us posted on your progress.
SovietSong sorry to hear you have had difficulties with your GP too. The symptoms can have a detrimental effect on our everyday and from what I’m hearing so often is it’s dismissed, misdiagnosed and ignored! Happy to treat each symptom in silo however refuse to look at the bigger picture!
Firstly, hope you improve soon and best of luck on Wednesday. My apologies if off thead- latched on to GP using TSH. Mine has been 0.27- retest ordered 3 months later, feeling not unlike the description on this thread- waking up tired and in bed of an afternoon to keep warm feeling cold. Called for results other day down to “TSH 0.21- in range no action to be taken” I asked for other numbers- was essentially dismissing and told to submit my symptoms under other/ new issue via eConsult.
Upshot- is there a reason TsH isn’t reliable or need a full picture?
Is there a potential reason that it deemed low at 0.27 in need of retest and possible treatment has been changed to ahhh it’s dropped more, 0.21, symptoms but no action “bye get on with it” attitude from GP. They would issue the 0.21 number but only said normal and not forthcoming at all- I asked three times was reissued well the TSH says and the doctor noted… Facepalm. Really thought finally- after 13 years of thyroid issues and no treatment may finally be doing something- or diagnosing it… have historic speculative diagnosis from endocrine 2013- after incident auto immune damage in gland 2011-12- was seen too late for him to be sure- he said it’s one of two things but see you WHEN it acts up again and we will know- it’s when, not if- see you in future.
Well in to future and wholly relate to a lot here.
What is it with GPs how is so little known- acted on… what on earth. Any tips for discussing with GP- I imagine he will offer a phone call or ring at random in the week- next week… I doubt consult but could push for one. Right now I have nothing to say except yawn with exhaustion and look at them like a kicked puppy and wonder why on earth I thought they’d behave differently and treat me humanely and question how I was once again foolish enough to suspect a doctor may help with my health
ArtisTick8 Im sorry to hear you have had such a difficult time and not getting anywhere with your GP. I found I got some recognition from the when I showed them the NICE guidelines and info from Thyroid UK website
Thanks trying to find them, well the ones relevant to me at least. It seems my GP has presumed my thyroid was hyper (without evidence) and has climbed down to 17.5 T4 then 15-16 range as a consequence of lower TSH hence problem solved as TSH preventing hyperthyroidism so that’s that… am calling to ask for clear results numbers wise- as I understand it that would be pituitary based action if…. But also, at best, I may have had high levels for a tiny burst so seems doc ignoring that the issue seems hypo not hyper. I’m not attached to it must be thyroid theory ok… they did not have any number for T3- can someone explain why neglect that? T4 16.4 TSH 0.21 no T3- “no action” routine telephone appointment - we will phone (that’s in a month’s time likely) advised to submit another E Consult as my throat and thyroid are swollen obstructing my throat. I thought last E Consult wounded urgent and drastic enough- seemingly not
It's difficult to follow this thread because of the many different stories. I live in the US, and if I had a little bit more money, I would pay for Paloma Health doctors to help me. However, today, they blogged about how to come prepared at an appointment, thought I should share:
All the numbers mentioned here by both of you are too low. ArtisTick8 your TSH is too low. In my experience that's an indication of autoimmune disease, can be Hashi's or Graves, I have Hashi's but always had a low TSH instead of high, or if you are being medicated with T3 than it can be normal, as TSH will be suppressed, but your frees should be well in range. My doctor still orders TSH, but it is quite pointless to base any treatment plan on TSH (alone). With an autoimmune disease your TSH can be all over the map. Only antibody tests can tell you what's up.
CookieRzasa as others mentioned, your values are far out of range. Although the treatment wouldn't change from the doctor's perspective, knowing whether this is due to Hashi's can help with adjusting your lifestyle, starting with your diet. As others indicated, testing for vits and minerals is important, and if tests are prohibitively expensive, then following advice from others, including sites like the thyroidpharmacist can help (but don't get ovewhelmed! - step by step).
For me, I could never get my symptoms under control (for ~8 years) despite being in range for the most part on a T4/T3 combo treatment. After living in Thailand for two months and barely consuming milk products, but going back to my cheese habits (I am Dutch) in the US, made me realize how much damage any amount of dairy was doing (I quit drinking milk 20 years ago for a suspected lactose intolerance). I would literally fall asleep several times a day... so fatigued... just because of dairy. In the end, going GF, dairy free (which means reading every label and basically going back to whole food basics), egg free (I did/am still doing an elimination diet), religiously consuming 15-20 grams of protein three times a day (at least 1/3rd in the form of a protein shake - the rest in the form of fish, chicken, or pea/rice protein burgers), limiting sugar (which happens automatically when consuming protein and whole foods) helped a lot. More than what any of the thyroid meds ever accomplished. In fact, 30 years of GI (and thus social) misery disappeared in a time span of 3 months. Clearly a dairy (+ egg) protein intolerance has been the culprit from the beginning (which I feel the doctors should have been able to put together from all of my lifelong symptoms). I also started taking iodine, but only because my hair was still falling out and I subsequently did my iodine intake math and realized my iodine sources were non-existent (I had dropped eggs from my diet plus I do not consume iodized salt). Normally a good Hashi's doctors will tell you not to take iodine, but of course advice should be based on the patient's intake through diet. I take iron, iodine (but around the recommended daily value not an excessive amount), omega3, and D3 for my hair loss which has now stopped. I also stopped using hair products that can be damaging to hair (only ACURE). Betaine HCl, digestive enzymes and probiotics (but that requires lots of trial and error) help as well.
My brain fog disappeared for 95% by going dairy and egg free, and I am finally able to finish my PhD. I also work out multiple times a week (kickboxing mostly) without repercussions (e.g. without being dysfunctional for 3-7 days). My depression and emotional rollercoasterness has decreased by 90%. I can finally fall asleep and wake up. I did have to hack my wake-up routine by putting my meds with my alarm, water, selenium and vit E in the bathroom where I am forced to look at myself in the mirror and start my day. The advice to keep meds next to your bed has not helped me at all ... as that would just cause me to stay in bed. I still have alarms next to my bed as well but those are back-ups.
I hope some of my story helps you find solutions in your life as well.
CookieRzasa 'I would normally be in the gym at 5am however I wake up feeling tired, have no energy haa as ve lost all interest in the things that would usually keep me sane. Had some very dark thoughts and feel like I’m slipping into a depression 😥' - I understand that. I am also a gym/outdoor rat. It is good to realize that the depression, even though you experience it, is not your depression. This is literally your brain being inflamed (especially if you have Hashi's) and not receiving enough nutrition/energy. It is a chemical imbalance that has little to do with how you value your life or who you love in life, etc. Of course many depressions are like that, but it means that the depression will go away as you decrease the inflammation in your body, get your thyroid hormones under control, get good nutritional uptake going again. For now you can perhaps try activities that have a huge mental health impact but low physical impact, like forest bathing, meditating, gentle yoga, easy cycling, etc.
Last but not least I want to say that this is a journey, like many others indicated. Keeping a thyroid health diary, including reactions to food and physical activity, etc., can be very helpful. What I have noticed is that this is difficult to do when you're alone, working, brain-fogged, etc. I think it can be good to have a partner, or a friend, who is willing to write in the diary with you each day. Or, if this is a friend, to meet up once a week to discuss things and update the diary. When you are brain-fogged and depressed it is really difficult to follow your own trajectory and identify what helps and what does not, to do vit/mineral intake math, which actions to take (e.g., eliminate certain foods) and which not. To do the reseach with you. You need a friendly set of second eyes. I would say that a loved one who is invested to dive in and figure this out is more valuable than any of the doctors (except for the thyroid meds prescribing abilities of a doctor). A diary also helps with the doctor so you don't downplay your symptoms from the past 6 months when you see your doctor again.
Again, sorry for the long story. I am just hoping this helps some of you out here. Hang in there! It will get better but fighting for yourself is key.
Endocrine in my case back in 2013 said he’d bet Graves 5:1 odds so 1 in 5 chance it isn’t but that was his educated guess by the damage- simultaneous under and overactive results etc he was provided with.
Link was of some help- though I think what I’m seeking needs to be U.K. based and familiar to the doctor’s here. Nonetheless a few buzz words and tips on “partnering’ with my doctor- I can see that working with one GP- if I can gain access to him.
Hi ArtisTick8 - I understand. I am actually Dutch and have a lot of friends in the UK, so I do understand some of the differences in health care approaches and universal health care issues, etc. In all honesty, in the US I have a nurse who is my 'confidant,' the endocrinologist has about 5 minutes per year for me.
In the Netherlands, my sister goes to a naturopath a lot - not sure if you have naturopaths in the UK. This can help with getting additional aspects under control (like diet). Perhaps vitamin testing as well.
'Endocrine in my case back in 2013 said he’d bet Graves 5:1 odds so 1 in 5 chance it isn’t but that was his educated guess by the damage- simultaneous under and overactive results etc he was provided with.' - what is the T4 reference range they tested it against? 16.4 sounds high but it is difficult to know without a reference range.
So, if that's high it is indeed likely that it is Graves. That being said, from your story it does not sound your doctor could have guesstimated this at all in 2013. With Hashimoto's you also get overactive and underactive results; they often need to let the thyroid burn itself out a bit to know whether it will go to the Graves' side or Hashimoto's side (ironically, this is also the time when you might be able to reverse the condition, but regular doctors never go that route/don't believe in it). My first antibodies that were out of range were Graves' antibodies, not Hashimoto's antibodies. A year later my Hashimoto's antibodies were through the roof (and have been ever since) and the Graves' ones were nonexistent. Most people have Hashimoto's in the end, not Graves. Again, even though I have Hashimoto's, my TSH has almost always been low (indicating hyper not hypo thryroidism). The best thing is to forget about TSH completely. Focus on free T3 and free T4, and in your case you need (and needed this in 2013) antibody testing (TPOAb, TgAb, and TRAb). Antibody testing is expensive so GPs may refuse for a while, but it is truly the only way to know what is going on and how to treat it.
Thank you SovietSong thats correct I will persue the private route as they confirmed hypo and said would start treatment straight away. Lost all faith in my GP surgery
Join the club as most of us on here lost faith in our GP long time ago! Without this forum what a mess we would all be in! I learn something new every time I check in!! I decided to go down the private route - best choice ever!
I’m glad private worked for you, the difficulty seems to also be that private endos are nearly all diabetic specialists who think they know enough about the thyroid to charge for the same rubbish advice you can get for free from a GP! If you have found a sympathetic and knowledgeable Endo, please make sure you give his name to TUK so they can add him to their list of recommended suitable practitioners.
My private Endo I'd from Thyroid UKs list! Recommended by another member. Saw an NHS Endo a couple of yrs ago who discharged me after 1st appt!! GP said T3 irrelevant - had enough claptrap nonsense so sought out private Endo who prescribed T3 as mine was 3.9 (range 3.1-6.8) so no wonder all the years of misery + at New surgery (moved house) they're went bonkers cos my TSH suppressed!! Been suppressed for years!Private Endo wrote to GP with my new medication - surgery even got that wrong on My GP app! Couldn't make it up! 😞
Brilliant, I saw on off the list who was allegedly thyroid friendly, wouldn’t do the test I’d been referred to have, did another instead which was pointless, told me there was no problem with my thyroid based on TSH & T4 so that was a pointless trip. I had also hand delivered a lot of info to support my situation, research papers etc. He didn’t get them before my appointment, I mentioned them and in his outcome letter said he’d now read them but they weren’t relevant. My DIL was also referred to him, she’s had her thyroid mostly removed, she has a T3 problem, he was dismissive with her so he clearly doesn’t specialise in thyroid. As for the surgery, nothing surprises me anymore, there are so many mistakes on my medical record between them and outcome letters I’ve given up. Tried to correct the latest one, was told the GP concerned would telephone me “next week” which is easily 6 weeks ago, clearly he isn’t going to bother despite what he wrote being out of the timeline and wrong.
So we take another deep breath+ on we go with help from Thyroid UK! Let's keep moving forward, no looking back as that just makes us miserable+angry. And if necessary, look to the likes of Roseway Labs to get what we need to aid our recovery!!💪Stay strong!
Sorry you are feeling so terrible. Hopefully your gp or private will see sense and start treatment soon.
I'm also coming up, slowly, from a long flare up that has lasted a few weeks. I'm still fighting towards an optimum dose but wanted to say the emotional side does improve as your levels do.
I get lots of ups and downs as fatigue and emotional lability are the two symptoms that roller coaster most for me, but it still is better than it was... Even a couple weeks ago when my flare was worse.
Hang in there. It's a long road but it will improve with time and treatment.
F4 (8.9) 12-22. that is -31% through the reference range
F3 (2.9) 3.1-6.8. that is -5.4% ditto
We aim to have the Frees roughly 75% through their respective ranges.....compare with your results!!
You are seriously hypothyroid, little wonder you are struggling to function.
Your medics are clueless!!
Hope the private endo is more clued up
It's shocking that an NHS GP couldn't strain their brain to join up the dots....they can't see past TSH which is not a reliable marker....though yours should be very high and therefore a red flag.
Starting dose 50mcg levothyroxine, test again after 6 weeks...you will need an increase to 75mcg....repeat "increase, wait then test" until symptoms resolve
Persist, insist until you are treated!
Correct medication should improve things....but be prepared it will take some time.
Not sure but with a range of 12 to 22 for F4 a reading of 12 would be 0%? So wouldn't 8.9 be in negative territory? I'm not the best at maths so may be completely wrong!
I had my tft checked on Friday (10/05). At the hospital I attend in Oxford once you’re on liothyronine they don’t bother to check TSH as they know it’s not going to be accurate. My results came out low T4 7.3 (11-22) and T3 2.9 (3.2-6.8). I’m on levo 125mcg and Liothyronine 10mcg tds. I already know I hv malabsorption due to previous stomach surgery. I told the gp I was happy to repeat the test but he was keen to increase my dose of levo to 150mcg n retest in 6w. I’m only mentioning this to show the contrast between different hospitals and gps as I can’t fault the service I’ve been given. It’s all on the nhs. I realise I’ve been exceptionally lucky.
I say I think I was lucky because I actually got to speak with the only go in that practice who was a hospital physician (including working in endocrine medicine) prior to becoming a gp. So I think that was put than postcode lottery luck. But you’re right about the hospital lab not bothering to test TSH once someone is on T3 replacement. That has saved alot of potential arguments! The postcode starts with SL7 if you’re interested! (Not slough)!
I note you wish to defend your NHS thyroid treament, but I'm concerned that your trust may be misplaced....and affecting your health!
My results came out low T4 7.3 (11-22) and T3 2.9 (3.2-6.8). I’m on levo 125mcg and Liothyronine 10mcg tds
Low is not good!
and
he was keen to increase my dose of levo to 150mcg (from 125mcg)
Little wonder he thought to increase your Frees, they are far too low! Nothing "exceptionally lucky" there, just necessity based on miserably low labs.
Gosh that extra 25mcg levo is going to have to work very hard to raise your levels to an appropriate dose (despite 10mcg T3 possibly slightly reducing your FT4)
How do you feel?
What is this GP advising to encourage better absorption because you are going to need considerably higher Free labs/ levels if you hope to remain well
Have you been advised to optimise vit D, vitB 12, folate and ferritin?
Are you taking any supplements? Minerals like iron and calcium can bind to thyroid hormone and inhibit absorption.
Do you take your hormones on an empty stomach, at least an hour away from foods and drinks, with a 24 hr gap between test and previous levo dose....12 hours for T3.
The service you have been given is not optimally treating you as your labs verify....your next test will show the difference that extra 25mcg makes
I don't want to concern you but I would caution about implicit faith in your treatment
Listen to your body....it will soon tell you if something is wrong
I am aware of the implications of adding T3.....I've travelled that road extensively and now need a supraphysiological dose of T3-only
I’m sorry you’re so upset by my comment. Obviously the dose of my levo is not going to be increased by more than 25mcg in one go. He did advise retesting in 6w and I’m sure that will guide any further dose changes.
Due to a renal condition I have regular ferinject infusions (feretin 250 (100-400), methylated folate result on Friday was 20 (2-20), 2 prescribed versions of vitamin d + K2 daily result 85 (50-150) and I don’t take any B12 but my result was 600 (300-900). I take B vitamins daily but stopped them a week before my test. My test was at 11.30am nil to eat or drink for 12 hrs, last dose of levo 11am the day before and last dose of T3 was 4am when I got up to pee! How do I feel? Knackered. But I’d always put it down to my renal condition so I’m looking forward to some better health tho appreciate it takes time. I was diagnosed in 2016 by accident when a blood test in hospital revealed a TSH of 79. I hadn’t been monitored until now. I only wanted to portray a gp who seemed to listen compared to the many negative reports we all know about. I certainly didn’t intend to upset anyone.
I was concerned about your abysmally low thyroid hormone levels which appear to now result in you feeling " knackered"
It is easy to confuse one set of symptoms for another....been there, when the problem turned out to be a complicated thyroid condition.
Of course 25mcg is the usual T4 increase but you are already taking 125mcg....and are not remotely optimally treated....I have explained the implications above.
You cannot afford to keep increasing your T4 in the hope of adequately raising your FT4, it will take an excessive dose....excess T4 comes with health issues not least a greater risk of cancer
I hope this listening GP does have the knowledge to turn things round for you
thanks. I don’t believe I confused upset with concern. But your reply seemed very angry - which I now realise is probably because you’ve had your own hard journey and wish to prevent others like me going down such a prolonged journey too. I appreciate that, thankyou.
I wrote a quick note to fancy pants but I think I confused her with you. Because it’s you who had a hard time at the beginning isn’t it? I asked if you were well now or still having struggles? Do you Hv a good endo/gp and support network?
I really need this forum because I think it’s always best to chat with others who’ve been there and whilst I have 2 friends (both GPs) with hypothyroidism neither has ever struggled and 1 is happy on Levo 50mcg and the other on 100mcg. I go against the trend because my weight never changed before or at diagnosis and I lost a bit with Liothyronine. I’m 5ft 4 (used to be 5ft 6) and only weight 45kg so theoretically I expected my correct dose to be lower. I can’t seem to gain weight (lost after stomach perforation) which I put down to my small stomach and poor absorption. But I won’t complain because I know many others with thyroid disease struggle with unexplained weight gain and difficulty getting it off.
You took your last T3 too late before the test so you actually have a false high reading there! Yikes. Next time juggle things the day before to have your last Levo 24hrs before the test and make the test before 9am if you can, or very close if not. And take your last T3 10 to 12 hours before the test.
I'm just going to tag SlowDragon to make sure my advice for your T3 dose is as preferred here. I'm currently on a different medication, natural desiccated thyroid, and using a slightly different testing protocol with it. I would hate to give you wrong timing advice.
Yes the liothyronine is supposed to be 8-12 hrs before and mine was 7 1/2 hrs so you’re right. There is a difficulty for me having a blood test at 9am because I Hv a portacath (rubber bung under the skin on the chest wall that feeds into the heart) so can only Hv blood tests at the hospital. Therefore in the week leading up to the blood test I started taking my levo a little bit later each day (normally take at 6am) so that by the test day my last dose was 24hrs before at 11am. This meant I had to forgo breakfast and only drank hot water until after the test. Thankyou for making contact as I might need to pick your brains later on to ask about your experience on NDT.
Re malabsorption. I had a perforated stomach with peritonitis in 2017 and since then Hv required quite large doses of meds (eg double doses of antibiotics). I saw a gastroenterologist about this and was advised to take as much of my medication as liquids where possible. I don’t know if levo comes as a liquid and whether or not you can open liothyronine capsules?
Gosh I've not heard of one of those before. Sounds serious. Well you did the best you could then and you know that your readings will be a little on the high side for T3, so better than they really are. Which is not good. I don't know what your heart issue is, but the heart needs a plentiful supply of T3. It's one of the big users of such medication. If you are under a cardiologist I would try talking to him about your low levels and see if he can help you get more prescribed. Having said that the old school cardio I saw for my Afib in the early days told me T3 could kill me so I'd be careful you don't have one of those first.
You can get liquid Levo. And if you are supposed to take liquid meds where possible, your GP should already have you on it! Go nag them. I don't know about Iiothyronine capsules, I have only used tablets. But those can be dissolved in water and a syringe used to administer a proper dose. You would have to check how to do that. I know it's possible, but nothing else.
Thankyou for your interest, concern and advice. I really do appreciate it.
Fortunately I don’t Hv a cardiac problem I have a renal condition called renal tubular acidosis. In a nut shell this means I pee out potassium and alkaline minerals so my blood and my body then become acidic (normally tubules in the kidneys reabsorb these nutrients). The body functions best in a slightly alkaline environment. So I take potassium and sodium bicarbonate to replace those that are lost. The reason the portacath goes straight to the heart is so that any drugs injected into it are then pumped around the whole body. So a portacath is a device for both taking blood and giving medications including things in a drip.
Thanku for your interest. Where are you on your journey now? Are you well or still struggling? Do you Hv a good endo and support network? You implied that you’d certainly had a hard time at the beginning.
This is a bummer of an illness to Hv and as well as drs, other people don’t tend to hv much sympathy for those with thyroid disease and think you’re skiving if you take time of work with it! I’ve never done that but at times Hv felt like it! The renal thing is a bit different because every other weds I go to the hospital for the day to Hv infusions of IV alkaline minerals (sodium Bicarb solution) via a drip into my portacath and at times potassium too. But with work I make up the time on other days.
The Patient Information Leaflet for Roma liothyronine capsules expressly says you can remove the contents from the shell!
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
Thankyou so much. The gp should Hv done this research but so should Hv I! In the past 8 years since diagnosis of hypothyroidism with negative antibodies this is the first time the gp has asked to check my thyroid function! I’ll have a look at those documents in my laptop! Thankyou.
I could have written your post at some point around and in early days of diagnosis and treatment.
HANG IN THERE!!! IT GETS BETTER!!!
Thyroid hormones are essential for our body’s functions from head to toe… brain, thinking, staying warm, muscles (ie, I know I’m in a dip when my lower back feels frozen), I had rosacea that cleared up with Levo, my hair was straggly and thinning … no more!, let’s see … what else lol.
I used to say “I feel 90 years old, I feel like I’m dying.” I felt depression and anxiety - never ever had before… I’m an eternal optimist!
It is quite literally ALL your pesky low thyroid hormones!
So you are on your way….. get that Levo!!! Then reset your expectations for about 6-9-12 months. It is a up-and-down journey in those early days when you start replacing… your body figures it out and strives for equilibrium, but there are up and down days.
I am now 18 months in and am just beginning to see the light at the end of the tunnel.
WE ARE ALL HERE FOR YOU, and it’s a winding road to feeling better… but you are on it!
so sorry to hear …I’ve been on Levothyroxine for three weeks now and beginning to feel well again after experiencing your symptoms. Don’t despair..you will feel better when you get your meds.
Once you start taking a sufficient dose of thyroxine you’ll be amazed how quickly you feel better. For me it was the difference between metaphorically lying flat and being up and walking.
You can also investigate the DI02 mutation (regarding poor conversion of T4 to T3) and use of liothyronine T3 in combination with T4. You can ask your private endo. Sources of T3, if not available for you on the NHS, can be named through private messages on the forum
You might have run your body into the ground getting to the gym at 5am (what time do you get up in order to be there at 5?) without the thyroid hormones your body craves. You could investigate adrenal fatigue. I think you’ll need to give your body and mind rest and care to help them recover and it will take time - months - notwithstanding the fast improvement on taking T4.
I am in bed for 9pm and up around 4:30am, gym 4-5 times a week and daily dog walks. This has been my routine for a long time however you could be right with over doing it as I get older and still trying to train like a 25 year old!
CookieRzasa I believe BenLabrador meant that you are overdoing it considering you probably have a thyroid disease. Having a thyroid disease often means that too much exercise leads to more and sometimes severe fatigue. Your body's energy making machine is just broken when you have a thyroid disease. Adrenal fatigue adds to that. I am just mentioning this because people often tell me that I am 'getting older so of course exercise isn't the same' but that kind of thinking (including when you do it to yourself) is quite damaging. These people deny my lived reality (since my early 30s), which is that living with a thyroid disease means being fatigued because of the thyroid disease and workouts having repercussions because of the thyroid disease. My point is that thyroid diseases are quite invisible to people who do not have one. It sounds like you took care of your body in life. Be proud Your thyroid is just throwing a wrench in this life - it is not your age.
P.s. I probably have the DIO2 mutation, and T4 alone never helped me. If this happens to you (no improvement on T4), BenLabrador is right, adding T3 is then the solution (I am on a combo treatment and I am still convinced T4 is doing very little but my endo likes it to establish a baseline). Ironically, in the US they could not initially prescribe me T3 for my thyroid, but they could prescribe it for my (Hashi's) depression (I was seeing a therapist)! How insane is that? Either way, I got it once and then they argued it helped with my thyroid 'as well' and kept it as a combo treatment.
I'm so sorry to hear you're so unwell. It's a battle to be heard and get treatment. Please, though, get in front of your GP as soon as possible regarding dark thoughts. Don't delay. They will take this seriously. (It's also an opportunity to pursue the thyroid dysfunction when you're there).
Hi I am so sorry to hear that, I have the same problem with my doctor, every time I go they say normal results we know our own body, I have to go back this month, I have told them it's not depression because symptoms are similar they wont help. I do hope you can get this sorted with a private doctor, please let me know how you get on, wishing you all the best x
Thinking of you. This will pass. I feel like I ‘lost’ the whole of my 50s! I’m finally on a ‘trial’ dose of 25 mg of levothyroxine and am to have a blood test next week. (After one out of range TSH from NHS and 2 from Medichecks - which were ignored - plus a massively out of range antibody result when finally tested by GP, although the private one showed a much worse result 4 years ago, but again ignored by GP).
I was initially told they wouldn’t do anything until I had 2 blood tests which showed TSH over 10, but I pressed because of my symptoms and because I’ve tried everything else. I’m expecting an uphill climb with it all, but at least I’m on the bottom rung of the ladder at last!
I’ve already been told they are only interested in the TSH, nothing else as it’s the one that counts! Oh dear!
But hang on in there and in the meantime be gentle with yourself and listen to your body. I do meditation and Qi Gong and now let myself rest when I need to, after years of fighting it and being sad because I could no longer do the walks I always did, I was very active and always outdoors. Also following advice on here I’ve worked on getting my vitamins and minerals optimised.
It makes me so furious when I hear how people are made to suffer needlessly. And it makes me feel so helpless at the same time. I want to hug you and share my meds with you or do something to get you out of that misery. And I can't. I hope that the support of this community will give you some strength, though, to hang in there until this starts to be resolved. It is so incredibly hard. Please take the best care. I hope you will be well sooner rather than later. In the meantime be good to yourself. Oh, and build up a good rage. That has carried me through the toughest times.
It sounds as though you have sleep apnoea as well ! See your GP and tell you would like to see somebody about your snoring as this causes your thyroid gland to fail.
You’ll be fitted with a CPAP machine which gives you lovely quiet nights no more snoring !! It’s great for I know I have one xx My husband also sleeps better lol xx
Don’t be downhearted there is life after feeling terrible every day . I’ll be thinking about you x take care x
I'm so sorry you're feeling so rubbish. I'm afraid it seems like it's pretty much par for the course with hypo, due largely to lack of knowledge within the medical profession, but also because thyroid function is nuanced and complex. I am 3 years into treatment, and am still fighting to get it just right, although I'm much better than I was. Let me reassure you - it will get better given time and probably lots of tweeking. Be kind to yourself, rest when you need to and do one thing each day that gives you pleasure.
The wonderful, knowledgeable people on this site - most of whom have been through what you are experiencing now - will inform, guide and support until you're in a much better place.
I’m so sorry to hear what you are going through, sounds very similar to me. I was going through something very similar and happy to say that 8 months on am finally feeling better. I will be honest it’s a long road as when you get put on medication normally started low and increase every 6-8 weeks with bloods tests.
This forum really helped me to increase my knowledge of hypothyroidism and knowing what to say to the GP to guide her really as they don’t really know much about anything. Have you had antibodies blood test? Normally if you have that and out of range TSH and symptoms they prescribe medication. I went on the NICE guidelines for hypothyroidism too so I knew what I was talking about with the GP. I did have to fight for it as 3 GPs wanted to prescribe antidepressants and for me to wait 3 months for another blood test from my first out of range TSH even though had all symptoms. But I did ring you every week until I got through to a doctors who would actually listen to me. 8 weeks on from that appointment I had blood tests which showed the antibodies for hypothyroidism and still out of range TSH ans finally was put on medication. However it did take me until now to feel better. But once you get put on treatment you will feel 10 times better. I hope you get it sorted lovely. Take care. Xxx
Thank you. Pleased to hear you are feeling better. I continue to go round the houses with my GP and they are going down the pituitary gland route after blood showed low cortisol. In the meantime I’m pleased to say treatment with a private clinic has started and I am full HRT as well as a starting dose of 50mg levothyroxine Jeanette56
That’s brilliant news!! I was told to go private but to be honest I couldn’t afford it. You will be feeling better in no time. I would still go the gym, I did just go easy. Take care xxx
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