I was diagnosed central hypothyroid in october and started on levothryoxine with T4 level of 12.5 (12-22) and T3 level of 3 (3.1-6.8). I was started on 25mcg for 4 weeks and then upped to 50mcg for 8 weeks of which I have had 3 weeks worth. My blood has not been tested since before I started the 25mcg and I am not seeing my endo again until January 7th (in 5 weeks) after the 8 weeks are up. Since starting on the 25mcg I have gone rapidly down hill to the point I am worse now than how I was before I started. I am exhausted and freezing (my circulation is so bad my fingernails are blue and I am getting chillblanes), I am more constipated than before and my digestion is horrific - I am of all the small subset presenting with gastroparesis like digestive symptoms that developed in may and have been worsening since resulting in terrible silent reflux that affects my talking and makes my throat and nose feel frighteningly clogged with mucus - I am barely able to consume 1200 calories a day even with a big chunk coming from meal replacement drinks because I now can't seem to handle many solids.and even this is not enough to stop the symptoms. I've also started getting worse mood swings and my anxiety has been understandably amplified by the constant discomfort from the digestive issues. At this point I am really struggling. I know that treating hypothyroidism is a long, slow process and that it requires patience but I really wasn't banking on getting so much worse. I can deal with the fatigue, coldness etc but I am concerned about how difficult it is to eat and drink and every time I have to it causes me huge anxiety. I know you cane feel worse initially but is it normal to feel so much worse and for so long? I am aware that 25mcg is nothing and 50mcg is just a starter dose and I would assume that by now after 7 weeks on levo if I weren't hypo I would be experiencing the hyper side effects a normal person would get taking it. I started getting random symptoms that I can now look back on as likely the start of my body trying to signal something wrong in early 2017 so my body has likely been slowly failing for at least a few years so wonder if it's just the case that the 50mcg is just much too little for me - I have also read that those with central hypothyroidism usually require a higher final dose than those with thyroid disorder. I already contacted my endo 5 weeks back after I initially got worse and he said to stick to the regime and if there is no improvement by next time I see him we could discuss alternatives but I don't know what to do especially because of the eating/drinking. I don't want to seem like I'm pestering and I also recognise I am only 3 weeks into the 50mcg but I am really struggling. Any advice would be so hugely appreciated! Thank you.
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liaratsoni
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25 is a low starting dose, its usually 50. Do you know your last TSH result? Usually after a dose increase you have to wait a minimum of 6 weeks before testing so you could test about the 23rd of this month. You can get a private test from Medichecks and they have a 25% off promotion on till midnight. You would need your TSH Free T4 and Free T3 tested and do not take your thyroid meds until after the test which is best done fasting first thing. Constipation can be a symptom of being under medicated - it is for me and feeling cold. Also many people need a dose increase in colder weather. Post your results when you have them for advice.
Hi, my TSH at start of treatment was 1.9 but is considered irrelevant for me because I have central hypo not hashis so its my T3 and T4 that have to be monitored. It is interesting you mention about cold weather - I had been wondering that earlier as my symptoms including digestive ones seem to get worse when the house is colder. I have had the constipation for forever but it's definitely worse atm!
Bloods should be retested 6-8 weeks after each dose increase
After 3 weeks is really to soon
What brand of Levothyroxine are you currently taking?
Different brands affect different people different ways
Can you see GP to get bloods tested
Or test privately
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies if not been tested
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
Thank you slowdragon! I thought that would be the case as 3 weeks isn't long - I think I know deep down I just have to try and wait it out despite how awful it is. The 25 tablets were TEVA but the 50 ones are Northstar. I've had both antibodies done and they were not present and I haven't had iron, vit d or b12 done lately but I am due a b12 jab this month and my folate was last tested a few weeks ago and was thankfully fine. My ferritin and b12 have been awful for years though and I would imagine they aren't brilliant right now as I can barely eat. The meal replacement drinks I have contain added vitamins and minerals so hopefully they can provide at least a little bolster!
Unfortunately I can't see my folate result - I have access to records for gp but not hospital and they put other results numbers but didnt put the folate for some reason just 'normal'. I had a vitamin d deficiency so was on supplements but doctors haven't bothered to follow up and I have had to stop taking it at the moment per above issues. I had definitely heard that about teva and wondered if it was part of the problem initially but I am worse now 3 weeks after it so I'm not sure?
Have you had cortisol tested as well? If you have a pituitary problem, you might not be signalling the adrenals to make cortisol - which can result in lack of appetite, dizziness and headaches, and inability to cope with physical stress (like cold weather).
Hi, I did have all pituitary tests done and cortisol was listed as normal - no ranges were given but it was 241 at 12.30 midday so not a lot I can understand without ranges :L I haven't experienced any headaches or dizziness though.
You would not be pestering if you contacted your endo now and told him all you have told us. You are very much worse and the fact you are struggling to eat and drink needs careful consideration.
If I were you I would be contacting him ASAP for help. His treatment plan for you is making you ill. He needs to make some changes for you.
Thank you for your reply! I will email him. I have had so many awful experiences with consultants who just shrugged shoulders these last few years that I think I am just terrified of causing a bad relationship after finding someone who understood - which is a terrible way for a patient to feel I know but I think we are all so used to being ignored and ridiculed that it's hard not to be scared of losing that!
Be brave. Tell him everything that has happened since starting Levo and especially the things that have increased or started since the increase to 50mg. Ideally you are trying to make him increase your dose again as 50 is obviously not enough to even hold at.
I emailed him and just received a reply and he has instructed me to up to 75mcg starting now! He also said if when i see him 5 weeks the 75 hasn't done anything he will switch me to a combo of T4 and T3! I am feeling pretty relieved right now and am very grateful you inspired me to email him! Thank you
Liaratsoni, You are right that it's common to feel worse on low doses like 25 or 50mcg, hopefully you will start to feel some improvement once you get up to 75mcg after Christmas. What you describe sounds like a step worse than I'd expect, but it's very hard to tell because symptom descriptions can be so hard to compare.
One thing you don't mention is whether you've been able to keep to your usual level of activity and kept up work, chores, caring activities, etc. One thing I've really found is that rest helps enormously. In the short term while you wait for your new dose you could rest a lot more, tone down and reduce the most active things you do in a week. It's almost like we start the week with a finite amount of energy in our pocket, and if it's used up on exercise or hard work then it's not available to keep our organs, digestion, etc, going.
For the acid reflux specifically, lots of us have it. Your case sounds very bad, and it saddened me to read your description. This is usually caused by low stomach acid. You can do a quick home test for this with the burp test, taking some bicarb of soda in water and waiting for a burp, search online for details. If this confirms low acid, it can be treated by taking acid such as apple cider vinegar in water with meals. I take about a teaspoon in a small glass of water ten minutes before meals. This plus a digestive enzyme tablet at night cuts my reflux to pretty much nothing. Some people take up to a tablespoon or maybe more. If you need more added acid you can take betaine hydrochloride tablets, experiment with how many you need.
Thank you so much for the reply! It is my hope too that I start to improve with an increase to 75mcg but these next 5 weeks are looking rough! I am 22 and was just about to start working before all this happened so I don't have a job and I have spent the last year doing basically nothing - I am so exhausted as with most hypos so I literally just sit on the sofa half asleep all day as I don't have energy to do more! Coldness has also been a symptom for years and unfortunately I think the cold weather really isn't helping my body conserve energy at the moment!
Yes the acid reflux began in May as one of my late stage and absolutely the worst symptom I have had. I think my body has been slowing down important areas slowly over the last few years and I didn't recognise the issues could be related/got used to them and so I think the severity of my problems now is my body having reached the 'breaking' point. I believe I do have low stomach acid - I did the baking soda test back in June and didn't burp at all so I likely have very low acidity. Unfortunately the usual acidic drinks/foods advice doesn't work for me as my reflux affects my throat and so my throat is constantly burnt and uncomfortable as my body tries to coat the acid with the mucus (sorry for the horrible image!) and so the acid in drinks/food unfortunately sets the pepsin in my throat alight and worsens the throat symptoms! I have heard about digestive enzymes and I was looking into them currently for the small amount of solid foods I can manage! Thank you again
Definitely look into digestive enzymes, as hopefully they won't cause any irritation in the way down. I take Solgars, I think just called digestive enzymes. But this is not a very strong one, I only choose this because it's cheaper than what I started taking. You may be able to find recommendations using the search or make a new post.
I've never tried Betaine HC, but it comes as tablets, so it's possible they don't start releasing any acid until they get into the stomach. You could have a try and see how you get on. Some people take several tablets. I've heard stories of very bad acid reflux on the forum before, so it's possible you'll find some other people's experiences if you search, too.
If you're spending half the day on the sofa you might be better off spending that time in bed, instead. I used to be in bed almost the whole day, but I'm now only in bed about half the day and it feels like an achievement. I tend to stay in bed late in the morning, then be up around 1-5pm kind of time when most stuff is going on, so I can enjoy the sun if there is any. Then I get back into bed and will have the TV on, listen to podcasts, play games on my phone, and if I'm feeling more well read or sit up to do some craft work.
Some people would call it a rubbish life, and I think it's a lot harder if you live with able-bodied people and you have those expectations around you that people are up all day and should be doing certian things. But I feel like I've carved out a bit of a life in what I'm able to do :p. Some people prefer to get up earlier and have naps throughout the day, but I don't really know how they manage. I and a few other people I've met feel that only complete lying down flat on a bed feels like real rest. Even lounging back on the sofa is not enough for me. I think the simplest way to build in more rest is to take every activity you do and see if you can push it down one level of exertion. If you are usually on the sofa, go down onto the bed, if you do some things sitting at the table, change those to lying on the sofa, if you usually stand or walk to do some things, see if you can accomplish them lying down, etc, etc.
It the reflux is a problem when lying down, try things like a wedge pillow or bricks under the head end of the bed so you've got gravity more on your side.
Don't pin your hopes too hard on the a January dose increase. All this stuff moves really slowly, and I usually tell people to expect about 6 months before they feel much better. Lucky people will be completely better in that time, but some of us will just get the first hints of improvement.
Thank you again for all the help! It is really hard sometimes especially considering others around you can't really understand. I live with my parents and sister and it's so hard watching my sister go out and work and have fun and live while I can barely eat or get out of bed. It's even harder as I've been so isolated these last few years I have no friends and I stress about being unemployed and moneyless so young. It's also difficult as my sister and I are a similar age and very close and we are also close with my mum and they want to go out and do things together especially with christmas - but I just can't no matter how much I wish I could! I contacted my endocrinologist earlier and he has said I need to increase to 75mcg now for the 5 weeks until I see him and if I am not better he will put me on a mix of T4 and T3. Despite all this I feel very grateful to have such an understanding endo. As you say I imagine it will take me a long time to get better as I think I have been moderately ill for years. Hopefully the 75mcg will help the digestion enough that I can eat and drink a little better - that's really all I am wishing for right now!
Its really good news the Endo wants to get you increased and is open to adding T3. With a good Endo like that you can be pretty confident you'll get a lot better at some point. It can be very discouraging because it will still be slow, you've got to think of it as a lot of baby steps in the right direction, which will eventually get you there.
It's really hard with other people getting on with their lives or not being understanding. I think it's very hard being in the situation you describe, when you and your sister should be making progress in your lives together but you're stuck being sick It's important to make sure you get to do some enjoyable things for yourself each day or week, and maybe build some skills your sister doesn't have, like meditation or knitting or a collection so you know you've got your own things to take pride in and not just be the one who misses out. I really recommend meditation, it's helped me a lot with the emotional stuff and also helps with getting deep rest, too.
It's very isolating being ill I really hope you manage to get some big improvements in 2020 and get a lot of your life back!
I’ve had the horrible side effects off levo like you. On all doses and brands,
I tried for four weeks then took myself off them. I’m already house bound with chronic pain condition for 14 years with other issues before being diagnosed. Doctors refusing to give me anything but levo on NHS and cannot travel. So taking nothing, I have ryanards so circulatory has worsened since being diagnosed.
So I’m stuck with nothing and my results where bad too 😔
Hi Sh69, I really recommend making a brand new post and asking for advice. There are always still things to try. Many of us end up buying our own and completely going it alone in the end. Treatment on the NHS is pretty dire and they have no Plan B to offer if we don't do well on Levo.
If you have other chronic conditions you will almost certainly see some improvement once on the correct thyroid hormone for you, and if you're very lucky you'll find it is the root cause for some of them. Thyroid hormone is needed by every cell and organ in the body, so almost anything can go wrong if we don't have it, and doctors very often leave people for decades without diagnosis.
In general, the best course is to continue with Levo for 3-6 months, because it's common to feel worse at first. A few very rare people find they are never able to take any T4 at all (the hormone in Levo). Intolerances to excipients in specific brands/formulas are much more common, and hypo people tend to have a lot of food and chemical intolerances.
You may be reacting to Teva, it made me really ill, terrible stomach problems, cramps and constipation, headaches, couldn't sleep, it took a few weeks to recover after stopping. You should try a different brand, that may help some of your symptoms. Good luck hope you feel better soon.
With T4 level of 12.5 (12-22) and T3 level of 3 (3.1-6.8), you were extremely hypo. I am assuming that those are "free" rather than "Total" levels, because the numbers you provide appear to correspond to the ranges I have seen for the Frees.
This shows that your FT4 was only 5% through the range, and your FT3 was 2.7% BELOW the range. You will probably feel much better once you have some T3 on board. Keep in mind that a dose only lasts about 8 hours, so most folks can't get along just taking it once a day like their Levo. T3 is much more powerful, so your dose will be just a fraction of your levo (T4) dose. I get along better splitting my T3, taking about 2/3 of it in the morning and the rest about 3 in the afternoon.
Yes I believe they were the free levels. But wow it really hadn't registered how low both of those were in/out of the range until you told me those percentages! I think this has been going on years though so I believed I was likely very hypo - I started getting the first more noticeable signs - even though I didn't know to recognise them as such - back in early 2017 and because I have central hypo my doctors only ever tested my TSH which was always normal. That's good to hear about the T3! I'm aware from other's posts on here that I appear to have a fantastic endo considering he has offered that as a next step. Finding the right treatment is certainly a journey!
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It's important to make sure you get to do some enjoyable things for yourself each day or week, and maybe build some skills your sister doesn't have, like meditation or knitting or a collection so you know you've got your own things to take pride in and not just be the one who misses out. I really recommend meditation, it's helped me a lot with the emotional stuff and also helps with getting deep rest, too. 
Levothyroxine 50mcg and still feeling awful!!
Six months on Levothyroxine and feeling much better
Feeling worse than ever
Feeling worse when on Levothyroxine
