Hello, I’m very new here and diagnosed subclincal hypo earlier this year after months of feeling unwell (put it down to getting old but I’m only 31)
pre levo my TSH bounced around all over the place from 7.2 to 4.14 to everything in between.
I started levo two months ago now at 25mcg and after 6 weeks, a Tsh of 4.5 and feeling not much difference I was put on 50mcg. I’m two weeks into this dose and feeling absolutely awful - is this normal to keep feeling worse?
I’m feeling so down and frustrated and am struggling with work and life commitments because of it and am just looking for some advice I suppose?
I’ve found with both doses I feel sort of okay for a few days at the end of the first week and everything just goes back to being crap again. Im at a point where I’m so frustrated I want to stop the meds but wondering if I should speak to my doc about how bad I’m feeling…. Just feeling lost and alone I guess.
Sprry for the big ramble and thank you if you have read this far!
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I don't know if my case is typical, but I like you feel pretty decent for the first week or so when starting or increasing a dose and then it seems like a slide down hill after that. I just moved up to 75mcg of Synthroid a week ago and had my typical "honeymoon" period and today I am so irritable. I am just hoping that it is part of the adjustment period and each time I increase the adjustment period isn't so awful and I will eventually level out.
After 6 weeks at 50mcg, my T4 was still near the bottom of the range. I am hoping the 75mcg gets me closer to where I need to be and I will be my happy, outgoing self again instead of this person I don't even recognize.
I would recommend you try to stick with it for 6 weeks and get tested to see if you are making progress. I completely understand how bad it can feel when we just want to feel better. Hormones are a long, slow process!!!
Hang in there and I hope you start feeling better soon.
yes we sound so similar, honeymoon period is such a good way to describe it. I feel like I get a glimpse of what the beginning of normal may feel like and then it’s gone again. I was told if I’m still feeling bad I could maybe have bloods at 4 weeks to see where things are at but that feels so far away.
How are you managing life/work? I’m starting to really struggle and not sure if I should say anything or not or take time off (but then if this is a very long road to recovery then it’d be ages off work!?)
I hope you get back to your old self very soon! It can feel so far away sometimes can’t it!
It is so frustrating. I increased my dose last Wednesday and had a really good weekend and now I am back to feeling like poo! Everything irritates me too! I slept the best I have slept in ages last night, so that is one positive. I am sitting here at work with a space heater on and a blanket around me because I am freezing. I can't stay focused on my job for anything. Fortunately, I am taking some vacation tomorrow, so I will be away from the office for 4 days. Maybe by then things will be a bit better. I can't stand myself, so not sure how anyone else can stand me.
I agree, waiting to have blood work done seems like an eternity. When I tell people I need to wait 6 weeks, they generally respond with , that isn't very long. Yeah, when you feel like this it feels like forever.
I am trying to hang in there and do life/work the best I can. I have become a good actress! I make it to work, but I don't feel like I do the quality of work that I would like to do. I have a colleague with hypothyroidism and she is struggling right now too, so we get each other. Her symptoms are very different than mine, but she doesn't feel well. My supervisor has gone through some serious hormone issues, not thyroid, so he is understanding as well. If I worked anyplace else, I would probably have been fired.
What were your lab results prior to increasing your dose? If your T4 and T3 are well into range, maybe you will get leveled out soon.
you’re so lucky to have very understanding boss and colleagues! Maybe I should try and speak to work and see what they say and hope they’ll be understanding.
Yes you’re right 6 weeks feels like an absolute eternity each time!
My Tsh was at 4.5 before my increase but I have heard that people often feel better with a Tsh of around 1-2so still feels like a very long way away.
I also take estrogen for PCOS and have read that this may mean you need a higher dose than usual so I guess feeling well still feels like a very long way away and I don’t understand why I’m feeling so bad even tho my Tsh is lower and only just out of range
Are you aware ……Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
thank you for this info. I am aware and have been taking very early in the morning with water then go back to sleep and don’t eat anything until 4 hours later.
Hi ,,, Just butting in here about the PCOS. A lot of G.P.s and others incorrectly believe that PCOS leads to a lack of oestrogen. This is not the case and it is progesterone that is usually lacking. Either way, I would be getting an oestradiol-progesterone ratio saliva test to get an accurate picture of those hormones.
hello! Thank you! I am taking both progesteron and estrogen. I just mentioned the latter as I thought it was the thing that affects the levo! Very much new to all this though!
That's because you're on too low a dose, which will make things worse, rather than better. At 31 you should have been started on 50 mcg and now be on 75 mcg. But, doctors have this crazy belief that if your TSH is only slightly high - what they call 'subclinical' hypo - you only need a small dose, and that's just not how it works.
When you start taking levo, the TSH - a pituitary hormone that signals the thyroid to make more or less hormone - will start to go down. Without the stimulation of the TSH - Thyroid Stimulating Hormone - the thyroid will stop making hormone. So, if your dose is too low to replace what the thyroid, you will be more hypo, not less.
Doctors think that levo 'tops up' the hormone that the thyroid is making. But, it doesn't, it replaces it.
Also, it is normal for people to feel an improvement to begin with, and then feel worse. That just means that you're ready for your next increase. It does not mean you should stop the levo!
thank you! I am definitely going to stick with it but what you’ve said totally makes sense and aligns with how I’ve been feeling.
Would you say it’s worth me pushing to start the 75 now rather than wait another month? I’m having such a horrid time I’m tempted to book an appointment to ask if it’s possible to up the dose sooner. Tbh at this point I’d happily risk a higher dose and being over medicated than doing these tiny increments every 6 weeks a feeling like crap. I understand the caution to an extent but this is really impacting my ability to work and just takin so long
I have had these levels tested and all are in range.
I’ve also had my thyroid levels tested first thing every time and made sure that I haven’t take my levo dose beforehand.
The brand is different but aside from that I feel like I’m doing all the right things and getting very little in return.
I do feel that I may feel better on a higher dose as my Tsh has increased on25mcg and now on 50 I’m still feeling the same plus I take estrogen which means I may need a higher dose.
If this carries on and I have to spend a months and months feeling unwell I’m going to lose my job.
I know I can eat your an hour after but I prefer to take my pill earlier so I don’t have to think about it when I get up to start my day and I can have a coffee
Both my antibody tests were negative and they keep redoing them each time.
Vit results are:
b12: 386ng/l ( ref range 197-771)
Folate 8 ug/l (ref 3-20)
vit d 41nmol (50-150) have been taking prescription since February to top this up and continuing.
ferritin 30ug/l (13-150) I’ve always been slightly anemic but haven’t taken iron recently.
aside from vit d I also take Yasmin combined contraceptive to control my PCOS (it’s awful without it)
Thank you so much for your help. I might try and get appt. today to discuss how I’m doing and beg for an increase because I’m just close to giving up. I had more more mental clarity at times when my levels were randomly bouncing unmedicated.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week or two
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until B12 is high enough
I will order some b12 today! I’m not vegan or veggie. I will also order a new blood test to recheck my levels.
I added folate in an edit because I forgot it before sorry.
was advise to take 25mcg (1000iu) a day and have been since Feb.
I’m still convinced I need a dosage increase though as my Tsh has increased since I started on 25mcg levo. pre meds it finally bounced to 4.2 and after 6 weeks at 25mcg it was 4.5
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
never found a reason for anemia but have always been borderline.
No heavy periods or anything like that, I don’t get them without meds. Not vegan or veggie either.
Thank you for all these links I’m going to have a proper read through on my computer later and get started.
I’m still feeling very confused if I have thyroid disease? I haven’t been feeling so well in the last year and back then in March my Tsh was 3.96 with ft4 in range, could that have been too high and it’s just been bouncing ever since?
My Tsh hasn’t been higher than 7.1 but have defo had the debilitating symptoms.
would you reccomend just seeing a gp privately that has an interest in thyroid issues?
I got the list from thyroid uk yesterday and am considering contacting someone as this is making me feel so anxious and it’s always hard to get hold of nhs gp…
I do have the endo list too but have convinced myself no one will see me because I am ‘just subclinical’ and no one seems to think it should be causing me such a problem…
my PCOS has always been very well controlled and hasn’t caused me much bother unless I am totally unmedicated for it.
I’m gonna have a look through the endo list again later and maybe make some enquiries but with my work being so reduced funds are very limited which is a worry when it comes to private consults.
This is really common. I have a PTSD reaction whenever I have to speak with a GP. Yesterday I had a zoom consult with a new consultant and the first thing I did after saying hello was cry because I was so worried she would gaslight me or dismiss me.
They don't live in your body. If it's causing you problems it's absurd for them to tell you it's not.
100% this. I did exactly this when I was diagnosed with PCOS because I’d spent so long being told there was nothing wrong and I just need to get a grip.
I almost avoid speaking to the doctor because I feel so hopeless and desperate afterward. It makes me stressed and on edge for the whole day.
Can I ask was this someone you saw privately? I’m tempted to go that route if they’re more inclined to listen and be less gaslighting.
Yes. I see a private consultant. Have seen a different one up til this week but I'm perimenopausal (at 37) and needed a consultant who could prescribe HRT too.
There's no way I'd convince my GP I need HRT at my age. I approached them last year with test results and they told me I'd just gone off my husband and needed Psychosexual counselling. 🤷🏻♀️
that’s an absolutely horrendous thing to say I’m so sorry. Nhs can be good for some things but as a woman I feel constantly brushed off. I absolutely hate the doctor so only end up there when things are really really bad but still no one’s appreciates that.
I’d love to see an endo but I’m concerned no one will take
Me seriously because my Tsh wasn’t that high to begin with (tsh 7.1) and ft4 in normal range …
I will PM you the name of my endo. She's great and has thyroid disease herself. She gets it and she's knowledgeable. Her initial consult is a bit eye watering but, for me, it was worth every penny.
My TSH only got to 8.something and my frees never went out of range either. I was sofa-bound. Just about managed to drop my young kids off to preschool but that was all I could manage.
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots,
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Very very common to initially feel worse as dose is increased…..after 3-4 weeks on new dose symptoms start to improve…..then as your body gets use to increased metabolism, symptoms can start to return….showing ready for next increase
it’s a bit complicated as I am self Employed but work through an an agency that manages me and my work.
I have a very sedentary job but it requires lots of clear thought and long hours of concentration which I currently do not have and have been really really struggling. Tbh it’s making me miserable and stressed because this is all so unlike me.
I know it’s difficult to say but how long until things improve possibly?
Ari3 see this post and the replies to it for explanation .
24 hrs gives more consistent fT4 levels than 12 hrs when testing levo ..... (8-12 hrs is for those taking T3 ).
Testing at 12 hrs for Levo is' sort of' ok , the period you really need to avoid testing is the first 6 (ish) hours after tablet , as that is when the biggest peak happens , but everyone's speed of digestion is different , and so the exact timing will vary.. hence advice for 24 hrs )
Very much doubt that increasing your dose sooner would make you over-medicated. But,t hat's not the point. We increase by no more than 25 mcg at a time in order to give the body time to adjust. Increasing by too much at a time would be countre-productive, and you could find yourself right back at square one.. I understand how hypothyroidism is impacting your life, and the temptaton to increase too quickly, but believe me, it really isn't worth it. Patience is the key.
also is it normal that some of the symptoms are slightly better whilst others are not at all? I’ve noticed my digestion is slightly less sluggish and my limbs are not aching as much/often but I’m still really struggling with tiredness, feeling cold, concentration and brain fog which are issues I never have before my thyroid went rogue and seem worse on the levo.
Sorry for all the Q’s you just seem way more knowledgable than me!
Yes, it's normal because every single cell in your body need thyroid hormone to function correctly. The correct amount of thyroid hormone. Which is why symptoms can occurr anywhere and everywhere in the body. But, when you start taking thyroid hormone replacement, that hormone isn't shared out equally between all the cells, the body tends to prioritise. So, in the early days, some cells get enough - or even too much - whilst other cells are still deprived. So, some cells will restart functioning normally, whilst others won't.
Don't apologise for asking questions, that's what we're here for.
”… the body tends to prioritise”. My sense has always been that this is the case. Do you have any references? I think this is an issue of vital importance. A sense of being able to ‘see’ what is happening allows one to go more with the flow, instead of wondering what’s going on and potentially undermining one’s healing/journey with unnecessary interventions. The first thing I truly noticed about my treatment (levo only really as yet) was my angina of well over twenty years standing, improved enormously. A very brief foray withT3 has helped greatly with my brain fog - although it ‘may’ have been too much for my heart as yet. My muscles elsewhere however are much worse than when I started meds, making me disabled and contributing to my fatigue. Obviously it’s better my heart muscle has improved and my brain too but I aim to keep going to hopefully improve my general muscles. I think the body is prioritising but if there were any references to support this I am sure it would make me feel a whole lot better.
Yes thank you. If such a thing existed it could be a useful pointer to how things were moving along. I know I have felt very muddled when originally starting meds and at changes. We are not our best self advocate in those moments. Full circle I guess and a founding reason for the forum itself!
I expect it does exist. But, in the past twenty years, I have read so much and kept so many articles and papers that I am no-longer able to find my way around them. And several computer crashes haven't helped! And, it may not have been in any of the articles or papers I've read, but in a lecture somewhere. Hypo brain-fog and poor memory does not make one a good archivist, that's for sure!
I am also on a high dose of estrogen, so trying to balance two hormones takes a lot of patience. I feel like I have my estrogen in a good place now. I had a hysterectomy close to 20 years ago and then a few years later, my thyroid gave out. I have had a lot of very incompetent doctors. I finally felt like myself in the summer of 2017 on NatureThroid, but it went out of production and I haven't gotten back to myself since. I am basically starting all over. You are correct in that supplementing with estrogen can increase the need for thyroid.
Generally, most people will say they feel better with a TSH around 1. However, the most important thing is where your T3 and T4 sit in the range. I am trying to get mine closer to the top of the range. I was on NP Thyroid and my T3 was high and even went over a few times, but my T4 was not even in range and I felt horrible. So, now I am trying a combination of Synthroid (brand name levothyroxine) with a little bit of T3. I am guessing your T3 and T4 just aren't where they need to be for you to feel better.
I see an endocrinologist right now, but I don't have much confidence in him. He is only concerned about the TSH. My colleague, with hypothyroidism, sees an internal medicine doctor who is a few minutes from my work who seems very knowledgeable in thyroid. She isn't even interested in the TSH once you have been diagnosed with hypothyroidism. She goes by symptoms and where you fall in the range with your T3 and T4. I called and booked an appointment with her, but unfortunately it is 3 months out since I am a new patient. They did tell me to keep checking to see if she has any cancellations. In the meantime, I hope I can get my thyroid levels up and then she can help me maintain it.
For now, I recommend you just keep taking your dose consistently, getting your bloodwork done, increasing if you still have symptoms, repeat! Your dose is still very low, so it may take a few more increases to find that sweet spot, but we can't increase too fast or our bodies might really have a fit. I assume you are taking on an empty stomach and not eating anything for an hour or so after taking it. I did switch my oral estrogen to night so that it is not close to when I take thyroid in the morning.
I'm huge advocate for np thyroid..all my númberu stay the same and I don't even know I have hypothyroidism...make the change..natural over synthetics better choice...gud luck
”…I’m tempted just to go privately ….”. It’s too early to go to the expense of private. You may not need further help if this all settles. Just a couple of notes of caution. Probably all endos in private practice in the UK are NHS trained and educated. So this means most of them pretty much follow the same guidelines as everyone else. They do not necessarily listen any better although they might prescribe differently. Please do not place your care there with any hope of shortening the time scale of your treatment. There is no wider support (they leave that to the NHS) and it costs to follow up and clarify issues which frankly are better answered right here on the forum.
thank you. I suppose for me at the moment because I’m so anxious and concerned by how much this is affecting me I’d like some more time to speak with someone who knows a bit more and has a bit more knowledge and can speak with me in a bit more detail.
I feel very rushed in my gp appointments and not heard and that increases my stress around all of this. It’s also hard to wrestle for an appointment on nhs and the fact that my other hormones are also shot isn’t even considered and how taking estrogen and progesterone can impact my thyroid meds etc.
I suppose in my mind I was thinking that I could speak with someone privately and then switch back to nhs care if I don’t need t3 or anything like that. I just feel very alone I guess.
Even if it just to get some reassurance at this stage then it’s money well spent I reckon but still mulling it all over.
I am glad NP Thyroid works well for you. It was a disaster for me.
By the way, all hormones are synthetic, even NDT. They all are manipulated in a factory with inactive ingredients. The only way NDT would be "natural" is if you ate the actual animal thyroid raw.
Levothyroxine is a bioidentical hormone and is as "natural" as NDT. I am not bashing NDT at all. I did great on NatureThroid until it went out of production. One is not superior to the other, it is what works best for the individual
First check your selenium if too low you won't be converting T4 to T3. Do you actually have symptoms of hyperthyroid as" your thyroid" is being shut down by Levo ! Likely your problem is your adrenal, seriously. Sadly it is my experience and also from what I have read issues around the thyroid are poorly diagnosed . Be well !
I am not sure of the most up to date tests. My doctor was a jack ass to put it plainly, but I met a women who worked in research who was very sure of what was going on with me . This was back in 2017. She was the one who helped me through my ordeal as I was weaning myself off of Levo. (which was a decision I had already made) I was in dire straights because here I was a healthy person who was walking 2 miles 3 times a week and the Levo was quite literally crippling me . I had been on the stuff 4 3/4 years, so it is not like I hadn't been patient and followed strictly the doctor's guidance. In short she recommended Now brand Cortical Support which I have been taking now since that time. I feel much improved, but my body did suffer much damage esp. to my muscles and joints. I also get joint and muscle therapy private pay to help perhaps maintain what I have. I wouldn't recommend going it alone, but I had no choice. I had no money and the doctor was too busy building problem lists and would have been content to write prescriptions . Oh, yeah about a year after being on Levo I had low grade elevated BP , prior to that I had a runner's BP and pulse. Read and learn and get support local. God Bless You and give you great health!
I feel your pain I’m going through the exact same, except I’m over active.
Im nearly a year in and there stilll trying to figure things out I was getting side effects off my first prescribed tablets so asked to be swapped which has helped a bit.
Im no expert but did you don’t take the medication you can possible have heart issues or worse
I had a stroke that’s how I was diagnosed plus lost 6 Stone in one year
that’s sounds so scary I’m so sorry that happened to you! I hope you feel better very soon (and I do too!) I’m going to stick with meds but it is hard not to feel like giving up.
I’m a self employed builder, I’m currently having loads of time of work and my earnings have been massively effected! If it makes you feel better I know a million percent how you feel
it's a great shame they started you on just 25mcg . that has made the process of getting you to the right dose take at least 6 weeks longer than was necessary.
I was given 50mcg to start with ,age 36 (TSH 6.8) , and i put that up to 100mcg straight after the blood test at 7 weeks (TSH 2.9) ...because like you , i'd only felt good for about a week.
I put it up by myself, not on GP instruction.... i just did it first and asked GP later (once i'd tried it for a couple of weeks and found it felt better).. he said if you feel better , try it for 3/4 months then come back for a blood test) .
I stayed on 100mcg for 4 months, than got tested (TSH still 2.5) .... this time i'd felt better for about a month ? ( can't remember exactly it was 20yrs ago)
I put it up to 150mcg straight after that test (same as before ~ did it first/ asked later )
....as my TSH had still been 2.5 on 100mcg , my GP said ok continue on 150mcg for 2 months then check bloods........ i felt ok on 150mcg for about 9 months
*note this is NOT a recommendation to go up in 50mcg increments , i should have been more cautious after i got to 100mcg eg. i wish i'd tried 125mcg , then 137.5mcg , i should not have gone straight to 150mcg. and i now suspect i might have done better if i'd been on 137.5mcg for 20 yrs instead of 150mcg , but i missed the chance to find out by being going up in 50's ..... and even though going straight from 50 to 100 was not a problem for me ..it definitely would be for some people ~we are very individual.
On 50mcg , i experienced the same as you have so far ( it's very common ) eg. i felt nothing for a week, then ok for a few days / week ? , then back to feeling 'yuck' until the blood test .
I felt better again after a week on 100mcg .and this time the improvement lasted .. erm.. a month ? (cant remember exactly , it was 20 yrs ago lol)
As the doses increases and gets closer to the amount you need , the 'feeling better' part usually lasts for longer , and the 'yuck' part feels less yuck ....other things (sleep etc) improve more gradually ......, but this process does take months ,and it does feel a bit like playing snakes and ladders .
Honestly , i know it's really scary about work (and frustrating) , but do give it a bit longer before you get panicked into going private , (or looking NDT /T3.. or worrying about your adrenals ....)
Levo at the right dose works well for many people once the body has had a few months to start fixing itself ,i and it is far to early to assume it won't work for you.
If you go private at this point you'll just end up much poorer, but no matter what you pay them they can't give you those wasted 6 weeks back , and their advice at this point would be basically the same as GP would do anyway , (gradually /carefully increase levo until you feel better consistently, while keeping an eye on blood tests and allowing 6 week for the TSH to settle on each dose ) .
If you want to increase in bigger increments than 25mcg , you can do that just as well (without spending a fortune) by pushing your GP (or by doing what i did )
I wouldn't discuss adrenals with a GP at this point , they will start thinking you've got a tin foil hat on / have spent too long on the internet ..., which really won't help move things forward effectively .... and anyway your symptoms are typical for hypothyroidism and the "up/ down again" is to be expected when starting levo , nothing so far points to any adrenal problems or the need for any T3/ NDT.
Focus on getting your levo dose optimised as efficiently/ quickly as you can , AND giving the body enough time to make use of it to mend itself ..... then see where you are.
Be realistic about how long it will take before you feel consistently better, and in the meantime adjust how you work and let some people know you may have some issues/ up's and downs for a few months while your dose is found and your body has chance to use it to recover.
( if you don't want to tell regular clients you are having health issues in case it frightens them off ,then do what i did ~ tell them you are booked up and it will be a few weeks before you can attend to their job. so that in private , you can actually build in a weeks rest between jobs, or allow for working slower than usual)
A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.
"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."
This post will be useful if you have a GP who doesn't want to increase dose any further when TSH is in range : healthunlocked.com/thyroidu... my-list-of-references-recommending-gp-s-keep-tsh-lower-in-range
this is helpful, thank you so so much. I wish so badly I’d started on 50!! I know you do not reccomend but it incredibly tempting to up my dose as based on weight my starting dose should have been around 86mcg as am I’m on estrogen I may need more.
I think depending on my next test I will try to push for a higher increase. I am happy to take the risk and am very in tune with my (stupid) body.
I think the other reason I am toying with going private is because I’m concerned how and why this has come about and am still worried I might have hashimotos as the last two years I’ve been mega up and down with symtpoms but never went to the doctor because I hate them but things spiked so badly the beginning of this year I had no choice. I find it hard to get nhs gp to take me seriously and even acknowledge my PCOS diagnosis which may or may not be a factor here. In my experience a private gp seems to treat you as less of a bothersome idiot. It’s also hard to even get an appointment.
I suppose the positive is that my NHS GP has said several times that we’re treating symptoms and not numbers so if I’m in range and still feeling shit she will increase the dose but I feel like we’re being very very overly cautious and it’s to my detriment.
Your dose yourself? Did it stuff up your blood tests? I have one in 3 weeks time and I’m worried I’ll mess it up or they’ll take me off the drug if I do that.
so you always need to get the bloods done after 6 weeks on a stable dose ,, otherwise the results are basically meaningless.
eg . if you increase now .. re book bloods for 6 wks from now ... or wait until bloods and then increase.. don't increase 3 wks before bloods.
no he wasn't mad (did 'raise an eyebrow' at me though.. they are not used to people using their own initiative about levo doses )
mind you , the reason he wasn't cross was because my TSH test after 7 wks on 50mcg was still 2.9 ,so when i saw him a couple of weeks later (to discuss the results) he saw no reason to say no to trying an increase as i told him 'd tried it already for a couple of weeks and it had made me feel better.
if you increase dose you do need to leave 6 wks before testing, otherwise the TSH won't be a true representation of the effect of that dose . (TSH response is pretty slow to get it's act together )
And when i had been on 100mcg for 4 mths then tested , my TSH was still 2.5 .. so again he had no reason to refuse my request for more tablets to try increasing my dose to 150mcg .. as again i'd already tried 150mcg for a couple of weeks after the test and told him it felt better.
However ....if my TSH had been right at the bottom of the range on 50mcg , or 100mcg then he would have been cross that i increased., and would not have ncreased the prescription .
eg . a year later when i felt a bit slow again , i increased to 175mcg for a month before testing, and at that test he found my TSH had fallen though the floor to 0.001 .. and then i got a pretty sharp letter saying " Reduce dose and do not take more than 150mcg" .
As for private Endo's not gaslighting you as much .. we'll honestly that's pot luck ,, and it's an expansive gamble when you've got no dosh .
Better to just improve your own understanding , grow a thicker skin, and have more faith in your own experience / knowledge when dealing with the GP .. it's just as effective and much cheaper.... it can even work to your advantage because GP' opinions may be easier to argue with than endo's.
Your GP sounds like they are basically 'on the right page' .. just over cautious .. so work with what you've got .. show them that you have understood the need for caution , that you are tuned into looking for signs of overmedication , that you understand it takes time and you need to allow doses to settle in for several weeks before you can really know how each dose feels , and that you are not expecting instant results. (and that you aren't in danger of wearing a tin foil hat) , and hopefully their confidence in listening to you and allowing you some autonomy should increase.
They are very scared of overmedicating patients because the GMC will give them a professional telling off if they do. The GP need's to trust you are being sensible / knowledgeable, enough otherwise they don't feel safe prescribing increases.
as for finding out why you have gone hypo .. private endo can't do anymore than test antibodies and then potentially do an ultrasound if antibodies are negative.. but in early autoimmune hypo the thyroid may not have enough damage to show up on ultrasound. so even a private endo may end up none the wiser about the cause at this point .
if you do want an ultrasound then there are places you can do that privately for about £150 without having to pay for an endo consultation just to get it done.
thank you so much your advice and to everyone for being a collective voice of reason that I needed to hear!
To be fair my NHS gp does seem pretty good in terms of thyroid stuff. The only thing that differs is that she said the absolute soonest I can test is between 4-6 weeks. Last time I could only get an appointment in the 5th week so stuck with that rather than wait even longer and that gave me the 4.5 reading which is my most recent.
I find it hard not to worry as my appointments are literally just a 5 min rushed phone call and I struggle to advocate for myself when I feel so rushed! I will persevere though!
I think I am going to try and push to keep increasing until I feel like
Actually despite what i wrote , i'd agree with her that 4-6 wks is perfectly ok at this early point when still not anywhere near full dose , needing to increase dose as efficiently as possible ,and when TSH has not gone low .
I think she's right to say 4-6 at the moment ..it shows she does understand the need to get on with it to some degree ...... (some poor sods get a GP that insists on waiting 3 months before they will test on 25mcg)
It becomes more important to wait at least 6 wks (and sometime longer) once you are getting somewhere close to right dose / fine tuning and TSH is getting much lower , because regardless of how long it takes the TSH to move , it can also take at least 6 weeks for changes in symptoms to stabilise.
also it’s so interesting to hear the reasoning behind such a cautious approach. That makes more sense but is a real shame as it seems to th e detriment of the patient!
I’m more an inpatient, go in all guns blazing kinda person so I think that’s why I’m finding these baby steps so hard and frustrating.
yes.... it sucks .... all of it . welcome to thyroid land ~ the disease that will make you learn patience whether you want to or not.. and will also make you do the equivalent of an 'A' level in endocrinology whether you want one or not , purely so you can argue effectively with GP 's.
it stinks... but you're not alone ....... you have one huge advantage nowadays ... back in 2003 you couldn't pop online and talk to hundreds of other thyroid patients to find out the score .. you had to wait 4 yrs till you happened to bump into one at a bus stop...
i wish i'd found this place years earlier than i did.
Tatty ogle is giving you excellent advise. Do not go down a bunch of rabbit trails and stay the course. I have gone the naturopath route 3 times and ended up spending a ton of money and feeling no better and even worse in 2 cases.
You have PCOS, so you know you are hormonally messed up and making a lot of changes is not going to help.
It sounds like you have a good GP that is willing to work with you. That is a rare find, so I would be hesitant to change if I were you. I think I got messed up about 9 years ago because my doctor pronounced me "in range" even though I felt horrible. I tried a ton of antidepressants in hopes of feeling better and they did nothing for me. If I had known what I know now, I would have pushed for increases in the levothyroxine. I trusted my doctor and now I know I have to advocate for myself.
I know it is hard and I have to tell myself every day that it is going to take time and patience. Some things are a bit better. The brain fog and extreme fatigue are better. It is the mood stuff that drives me crazy. I am just not my happy, outgoing self yet, but I know she is somewhere in their.
Please stay the course and keep testing and increasing. I was started on 25mcg and then was increased to 37.5mcg, then 50mcg and now 75mcg, which i pushed for. I wasted a lot of time on low doses, but I can't go back and change that now. For some odd reason, my endo started me on a low dose of T3 and now doesn't want to test my free T3, so I will have to push for that.
When I started Levothyroxine, It took about a week to feel better. Week 5, I felt worse. Week 6, my dose was increased. Same thing happened again, but my symptoms were not as bad. Next dose increase, same thing happened. I eventually went gluten, dairy, sugar free and went on a low FODMAP diet that seemed to be my missing puzzle.
One reason for waiting at least six weeks before having a blood test is that it takes the TSH that long to find it’s new level.
Another reason is that some people find, as they get close to their optimal dose, or if they are changing the treatment that after several weeks or even a couple of months of feeling worse they sometimes start to feel ok eventually. That’s not that helpful or even necessary when titrating Levo, but bear in mind some people need 8-12 weeks to really know how they feel on a given dose.
I’d lose my job if I wait 12 weeks at a time though. It’s feeling near impossible now at just 4-6 weeks as I’m feeling so bad and struggling so much with my day to day. Tbh the longer this goes on the more hopeless and miserable I am becoming.
I feel like giving up today as well, but I know that isn't an option. I feel so sad today for no reason. I have a good life, but my hormones just aren't thinking so at the moment. At this point, I definitely won't wait more than 6 weeks to test.
same. I’m beyond fed up and I spoke with my employer today and they were less than helpful. I’ve worked with them for over 10 years and have only had time off once prior to this but have basically been told that they don’t really care and if I can’t do the work then they’ll just move on without me. (Rather than trying to adjust schedules and be more accommodating) I am so done.
I am so sorry! They obviously don't deal with this type of chronic illness. You will be okay once you get on the right dose. I wish they would understand that. Today has not been a good day for me either. I feel like a tired 3 year old.
Thank you. Yeah I feel like they’ve kind misconstrued even though I’ve explained it’s just finding my dosage that is the difficult stage nd hopefully free that I’ll be back to my old self(gosh I hope so)
Read Charlie-Farley 's Bio (click on her name it will take you to her profile page) .. when she came here she was recently diagnosed but had been left undermedicated and feeling lousy , unable to manage her work , needing her hubby to look after her and was seriously doubtful of her ability to keep their business going .
She has improved hugely in a (relatively) short space of time, by pushing the GP along to optimise her dose , and by working on some other diet related stuff herself (and is now well enough to function ok at work .. and has taken on being an Admin on here )
Basically no one who hasn't got it themselves (or is close to someone else who has) will properly understand how hypothyroidism and it's treatment can affect people .. the predominant impression they have is that "you just take a pill every day and now you're fixed"..... most employers (and your friends , and your family) simply won't understand the ups and downs or the timescales involved ....... but hang in there.
there is light at the end of the tunnel, and hopefully you'll find a way to keep the wheels from falling off until you get there .
hello thank you so so so much for sharing this! It has really not been my week and I was just feeling like giving up completely on absolutely everything.
Charley’s story sounds a bit similar to mine and it is such a big reassurance to hear she got better!! What an awful time she had! It is odd that the misconception of being out of range slightly should only require a baby dose. That’s what I was told too.
I defintrly think my employer didn’t understand what the issue was as I’m taking the meds. despite my best efforts to explain! I do think it’s very hard to explain what a big impact it has on like everything in the body!! My employer couldn’t understand why o can’t just get on with it (I have been trying to for months already) tbh next time I think I will not mention my health and just try to build in extra time for things…
It is so so lovely to have this forum full of people like you who have been there and done that and can understand. So thank you!
you're welcome GreenTealSeal..... i agree , trying to build in some extra time is probably best.
ps i found your reply by accident .... to alert someone that you've replied to their comment , you need to use the reply box that is directly underneath their comment. (using the reply box at the bottom of the page only alerts the person who wrote the post)
I suppose what I’m most perplexed by compared to others stories is that with my test results the antibodies are both always negative and ft4 and t3 are always in mid range or sometimes a bit higher.
It just seems to be my Tsh that is all over the place, when it’s higher I can feel it cos my symptoms are worse and it’s 1000% harder to function. :/ but everything else in is in mid range.
Don't be too surprised that your fT4 / fT3 don't give such an obvious clue to how crap you feel. as your TSH does
TSH is actually a very useful test as long as it's used correctly, (we slag it off on here a lot , not because it's a bad test to use , but because it's so often used and interpreted incorrectly, without taking everything else including symptoms into account)
it's a very effective 'early warning system' .
It's a question of scale (made up numbers because i can't remember the real ratio).. but say your fT4 goes up/down by a factor of 0.1 .. your TSH responds by going down / up by a factor of 10
The fact that TSH goes up noticeably even though fT4 movement still seems relatively insignificant is a clear sign that your cells can already tell they are not getting enough T4 / T3 ..and even though the amount of T4/T3 that they are 'missing' is relatively miniscule , if it's not enough for what the cells need ,your body doesn't work right... and you feel crap .
we are very individual in what our TSH / fT4 result are at the point When we are healthy ,, and also when we really start to struggle .. some are still walking /talking/ going to the gym and just 'feeling a bit under par' with TSH 40 and fT4 well below range ..while some others would be virtually comatose at that point .
And it's absolutely not about how 'tough' someone is being,... it's about how your body happens to use thyroid hormone and a multitude of other things that science barely understands yet....
suppose for example ,that your personal 'normal' level of fT4 was usually in the top third of the range,, and now you've got just over halfway.. thats enough of a problem to mean your body can't function as it should ....... so don't compare how you feel to someone else results , for al you know their personal 'normal' fT4 level may have been halfway or lower ... being unable to function properly with 'normal looking' fT4 levels doe not make you wimp ,, and someone who's still functioning well enough with a below range fT4 is not being any more heroic than you ... it's just that their central control system is set different to yours. and that all.
See how different these 10 healthy people are ( their TSH /fT4 / fT3 results have been converted to "% through range" )
thank you I so needed to hear this! I have such a fear of doctors as well so I’m always trying to play things down and hope things will resolve by themselves!
Thank you for the explanation too. It’s so helpful as there is so much to get my head around about thyroids right now!
I do a bit of reading and then start panicking a bit especially when I hear about some people not being able to convert t3 properly and needing that in addition to T4. I know it’s very hard to be prescribed it in the uk and it can be very expensive which freaks me out but I’m hopeful once I’m in the right dose of levo I’ll feel like my old self….
Thank you so much for providing all this info and some rationale to my frustrations and worries! I’m aware I’ve gone in a bit a mad rant on this thread over the past few days ha!
Making a very brief appearance as going to sign off for a while (hubby and I are moving). You can get so much support and advice from this forum (esp tattybogle 🤗♥️) and previous posts.
Just remember being in the range just doesn’t cut it. The range for thyroid hormones is derived from ‘population’ data; a group of people who all sit somewhere in the range, some at the top, some in the middle, some at the bottom and others inter dispersed in between. So a person who is euthyroid (well) at the top of the range will be hypothyroid perhaps at the mid range and someone who is euthyroid in the mid range may be hypothyroid towards the bottom of the range and people who are euthyroid towards the bottom of the range will be hypothyroid below the range and the doctors will actually recognise this as being hypothyroid because it happens to agree with the blood test. Truth is, the doctors don’t know how to interpret data. They also don’t understand the limitations of a test, the inherent uncertainty with any statistical model and they have erroneously put all their faith into tests they can’t intelligently read at the expense of symptoms that should be considered above everything. You will have to gently lead them. I made posts of my interactions and how I levered them to get to a full therapeutic dose.
Go for it! You can do this. They ;doctors) don’t get taught half of what they need to deal with thyroid issues and their remit is just too great. As I have read I have come to feel so very sorry for them. Whole system needs a damn good shake up.
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