I'm new here but absolutely desperate for some answers. I’m sorry this is going to be long. I was diagnosed hypothyroid back in 2013 and did okay on 25 mcg/day of Levothyroxine. My TSH was never ideal, often a bit above the acceptable range, but whenever they tried to increase my dose I got tons of hyper symptoms. I muddled along until 2018 when I was pregnant with my first child. My GP and later the endocrinologist said I had to increase my levothyroxine dose because having high TSH/low T4 was dangerous for the baby. I eventually ended up on 75 mcg/day even though it made me feel HORRIBLE. My pulse rate was constantly through the roof, bad insomnia, nearly constant diarrhoea, dry eyes, feeling jittery despite being exhausted, etc. But the blood work was “acceptable” so the endocrinologist discharged me back to the GP and washed his hands of me. After the baby was born I went down to 50 mcg/day and felt so much better. I was finally getting some sleep (and that’s saying something considering I had a newborn baby). My blood work was okay at first, but then my TSH shot up higher than ever. They put me back on 75 mcg/day but I felt so bad I had to go down to 50/75 on alternate days. I still felt awful, but slightly less awful. My GP was completely useless and treated me like an idiot and basically implied he didn’t think I was taking my medication but he did eventually refer me back to the endocrinologist, but it took 9 months to get an appointment. I was ready to go into the appointment and tell them that I can’t go on feeling this bad and that I feel 100 times worse now than I did before I was diagnosed. But shortly before the appointment I found out I was pregnant again. So now I’m back in the situation that they guilt me into ignoring how horrible I feel to do what’s best for the baby. They put my Levo up to 75/day, then to 75/100 alternating days and now want to go up to 100/day. BUT I just can’t keep doing it. I feel like I am going crazy and want to crawl out of my own skin. The insomnia is unbearable. A normal night is maybe 2-3 hours, but a couple times a week I don’t sleep at all.
I’ve just moved house, so can’t find some of my blood results, but here is what I can find/have noted down in my phone.
May 2018 (20 weeks pregnant, Levo dose 50/75 on alternating days): TSH 2.94, Free T4 11.3- experiencing heart palpitations, racing pulse and diarrhoea
July 2018 (28 weeks pregnant, Levo dose ): TSH 2.9, Free T4 9.8, FT3 2.8 – racing pulse, diarrhoea, insomnia
Feb 2019 (4 ½ months after baby was born): TSH 24.5 (0.35-4.94)- felt great, but got pins in needles in both arms and legs regularly. They also tested a bunch of other things: calcium 2.4 (2.1-2.55), magnesium 0.85 (0.7-1), B12 294 (187-883), serum folate 3.1 (3.1-20.5), iron 21.8 (4.4-27.9), transferrin 2.95 (2-3.2), ferritin 47 (20-204), sodium 139 (136-145), potassium 4.8 (3.5-5.1), vid D 63.3 (80-150). THEY didn’t even bother to tell me that my Vitamin D was low but I got a copy of my blood work to take home with me and saw it was low so have been taking a supplement since then.
Nov 2019 (10 weeks pregnant, levo dose 50/75 on alternating days); TSH 5.58 (0.35-4.94), T4 10.4 (9-19), T3 3.4 (2.6-5.7)
Dec 2019 (14 weeks pregnant, levo dose 75/day); TSH 3.97 (0.35-4.94), T4 11.2 (9-19), T3 3.1 (2.6-5.7)
Feb 2020 (22 weeks pregnant, levo dose 75/100 alternating days): TSH 4.7 (0.20-4.50), free T4 11 (9-21), T3 1.8 (don’t know range as I didn’t write it down)
So long story short- levothyroxine makes me feel hyperthyroid even though my blood work comes back hypo. I am getting so frustrated because despite increasing my levo dose (and making me feel so much worse), my levels aren’t improving and they want to increase the levo even more. But I honestly think I will lose my mind if I take more or even continue to take the current dose. I need answers or at least some ideas of things to try. I should mention I went gluten free for about 6 months a while back but didn’t feel any better so gave it up.
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Yours sounds like an unusual presentation. I wonder if you could ask for a referral to another Endo? Particularly one who is used to dealing with more complex cases. Sorry to hear that you are having such a rough time of it and clearly have been for some time.
You are taking levo first thing at least an hour before eating or drinking and. Four hours before any vitamins or calcium? I found milk and lots of things really affected absorption of meds. Good luck.
How do you know they are hyperthyroid symptoms? I was hyperthyroid then had RAI and became very hypothyroid. I experienced the same symptoms for both states.
When I am hypo I lose weight, my heart races and misses beats. I have insomnia. I suffer from anxiety, panic attacks and I ache all over.
Have you tried taking your levo in 2 doses? This makes it easier to tolerate the increase in hormones.
It's reassuring to hear that someone else gets symptoms like losing weight and a racing heart when hypo. It makes me feel like I am going crazy when I don't have hardly any of the symptoms off the standard lists for hypo but have a ton of the ones on the hyper list. I know I am not actually hyper but no one ever mentions that these can also be symptoms of hypo.
For years I blamed the levo. As a result I kept myself on too low a dose. The doctors were happy because my TSH was always in range around about 4. During those years what I lacked in thyroid hormones I made up for with adrenalin. This is why I had the anxiety. It was not good.
In pregnancy you have extra demands on your body which is why with increases you do not see improvement.
I take my levo first thing in the morning, at least an hour before any food or drink except water. And I am careful not to take any other supplements (I take a calcium/magnesium supplement and vitamin d) until after lunch so at least 6 hours later. I have also tried taking it late at night and splitting into 2 doses but nothing helps.
I don't know they are hyper symptoms. I just know the higher my levo dose the worse the symptoms get and when my levo dose is lowered I feel better. I felt better than I have in YEARS when my TSH was over 20. I certainly wouldn't have a problem taking the levo if it actually helped but I feel so much worse than I ever did before I was diagnosed.
Many people find different brands are not interchangeable
What brand of levothyroxine are you usually on?
Teva brand upsets many many people
Many people find Levothyroxine brands are not interchangeable.
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.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Essential to test vitamin D, folate, ferritin and B12
These often are very low when hypothyroid
Frequently need supplementing to improve to optimal levels
I think I have been on most brands available in uk at one time or another and not really felt better on any of them. For some reason, they always give me 25 and 50 tablets, never 75. At the moment both are Northstar brand which is apparently actavis. No wait, I just checked and the 25 are Nova. I just assumed since they were both Northstar they would both be the same.
Thanks for this. I had checked my 50 mcg tablets when I got the Northstar brand for the first time last month and thought that's okay, they are just actavis (had before). But I didn't realize that the 25mcg ones were rebranded Teva until this morning. Maybe as a starting point I will try to get a different brand for the 25mcg. But I have been on just about all the other brands at one time or another and they all seem to cause me problems. My mum lives in the States and she takes Tirosint. Shame that isn't easier to get over here because it sounds really good from what I have read.
Symptoms of under active thyroid can feel similar to over active. I would be drawn by your blood work and give it three months at the dose they suggest. Have you tried natural thyroid instead? Are you sure you haven’t got Graves?! Is your vit D ok now? Have you had it retested? Ps two babies within 18 might make anyone feel a little panicked lol 😂 : ) x
Symptoms are a very personal thing. There are over 300 hypo symptoms, and no-one will have exactly the same selection of them. Losing weight can be just as much a hypo symptom as a hyper symptoms - and in the same way, people with hyperthyroidism can put on weight.
You are very hypo, and now you have a baby using up your T4, so not surprising you need more. As SlowDragon says, it could be the brand of levo that doesn't agree with you, but it really does sound like all your problems stem from being under-medicated. So, 'they' are right to want to increase your dose. Just ask if you can have a different brand, to see if that helps. How is your iron/ferritin? Are they testing that? Because that can often drop during pregnancy, and you need lots of iron for the baby.
Hey j9j8j7, this indeed can be very frustrating. I have a friend who was a tsh of 3, her ft4 is lowish or just in range and ft3 is high and she feels great, but can't take more levothyroxine , she goes hyper then. But her ft3 is high, top range.
Sometimes I think this has to do with being quite hypo. I still have to go through bad hypo symptoms as I'm improving. Insomnia is my hypo symptom, so is anxiety, so are palpitations. I wonder if you might be having issues with Levo as well. But then, being hypo for a long time with high tsh almost guaranteed a bumpy ride when increasing meds not in everyone , but in a lot of people.
I would also check cholesterol to determine if you are hypo or hyper. Also you could check your shbg.
That is within range for sure. Shbg is quite useful to check too, also your pulse, your temp sometimes, bp. You well could be one of those people that have strange readings, but are fine! I'm sure there are other conditions that spike tsh or.maybe certain medications.
What about your symptoms on 50 Levo? Are they all gone?
Blood pressure used to tend towards the low side (I have passed out a couple of times by standing up too quickly) but has been around 115/70 for the last several months.
Symptoms not gone on 50mcg/day. Just much, much better (but not as reduced as when I was on 25).
To clarify, I was originally went to the gp because of extreme fatigue. They eventually did some blood tests and found out I was hypothyroid. The fatigue wasn't nearly as bad after starting on 25mcg/day. I was still a bit overtired but functioning. They tried to up it to 50 several times over the years (because my TSH was just out of range) it didn't help at all with the energy levels and made me feel so rotten with insomnia, racing pulse, nausea and nearly constant diarrhea. After I had my son, I was able to tolerate the 50 a bit better but I think a lot of that was relative- it was such a relief to be off the 75. I really don't know how it compares to when I was on 25 because my life was so different- obviously I was tired but I had a newborn baby.
Okay, I think it could be that you are having issues increasing meds. When I increased mine I had a terrible fatigue for weeks and weeks, worse symptoms than before, until I got to another level of dose. If you can tolerate 50 now, that confirms it. However, was fatigue your only symptoms when you were diagnosed? Do you have Hashimotos ?
Fatigue was the main one. My periods also got really, really light (wasn't on hormonal birth control so it wasn't due to that)- can't say that was a side effect I minded.
Sex hormones never tested. Tested strong positive for thyroid antibodies back when first diagnosed but told negative for antibodies when tested last month (although I actually have the results from last month printed out and don't see any mention of antibodies so ???)
It would be useful to run a full thyroid panel with antibodies. I am tagging someone here JaclynB , Jaclyn did you say you need your tsh between 4 and 5 to feel well, I have read your post a while ago? Hope you don't mind.
Do you take any other meds like antidepressants or anything at all? They can cause for tsh to fluctuate a lot.
And sorry for so many questions, it is difficult sometimes to figure it out.
Do you have access to someone or a company or private lab that could run sex hormones, thyroid with antibodies, shbg and ANA, CRP, ESR - autoimmune, infection and inflammation markers? Also cortisol would be useful.
Another way is to try a different med in case you don't tolerate thyroxine at all like some others here on the forum. That's taking t3.
Taking a 25mg tablet twice a day might help . As the baby is growing and you feel the dose is too high then as the hormone may wear off after about 6 hours taking the other half dose later it might help. In any event your doctor should be able to see if your active T3 free is enough. If it is not being converted properly as you are taking only T4 this may affect how you feel. As you have rejoined another practice expect you will have new tests. You can ask for a print out to see what your free T3 and T4 are. T3 shortage can cause anxiety and insomnia.
When pregnant TSH should be under 2.5. Most hypothyroid patients need TSH around one
All four vitamins need to be optimal
B12 and folate need to be not too low and not too high either
Low Folate linked to Spina bifida in pregnancy
Presumably you have had in-depth testing?
As HashiFedUp said, it could be adrenals
They try to compensate when you are hypo, and maybe are overdoing it? I still feel hypo, though not too bad now, and sometimes wake up very hot, quite headachy and with a pounding pulse. As if the natural waking up process (temperature, blood pressure and heart rate increase) is exaggerated. No feelings of agitation though.
Levothyroxine doesn't suit everyone. T3 (in a very small amount to start) or desiccated thyroid is another possibility, as I think has been said.
Your vitamins and minerals need to be optimal too. Your vitamin D level is still very low - how much supplement are you on? GP prescription is usually far too little, normally only 800iu a day which isn't likely to make much difference. I am taking 4,000 units D3 per day, with K2 and magnesium, (which are needed with higher doses of vit D). I will probably end up needing between 3-4,000, but level is up to nearly 100. Vitamin D Council recommends between 100 and 150.
B12 294 (187-883). Could be a lot higher, but should be taken with a B complex. apparently the Bs need to be balanced.
serum folate 3.1 (3.1-20.5)
Still low. Again a B complex plus prescribed folate might help. Though needs testing after a while in case it's too much.
Thanks for everyone's responses. It's encouraging to hear my reaction isn't quite as unusual as they are making me think at appointments. I guess the thing that confuses me the most is how I felt so much better when I was on 50/day even though my TSH was 24. Everyone seems to think I should feel better the lower my TSH, but the opposite is true. I have never felt worse than when it was below 3.
They retested vitamin d a few months ago and it is on the low side of the normal range now. I am still supplementing because I know it's a lot better to be on the upper part of the range.
I have tried about 4 or 5 b complex brands (including a liquid one) but they all make me really sick to my stomach. My prenatals have some but probably not enough. I can't remember my last test results because the doctor wouldn't give me a copy and he was already annoyed at me for writing down the TSH, T4 and t3 results so I have to fill out an official request with the hospital to get a copy of the other results. Or I have since moved up to Scotland so maybe my new doctor won't be so belligerent when I ask for copies of my test results.
I can't offer any real help, still don't know enough myself. But just to say I felt fine when my TSH was 17. I've never felt ill being hypo (picked up on general health check when I was 70, though from the few symptoms I do have, I think I've been hypo for 40 years). Though I still felt well when my TSH was 17 I'm staying on levo as I think eventually my thyroid may fail completely - if TSH keeps rising, which it has. Though I don't feel ill, or worse since taking levo but I don't feel any better either - as I say very few symptoms though.
I've been thinking lately that possibly people with Hashi's or other health issues along with being hypo feel the most ill/have the most symptoms and need TSH very low unlike people like me who are 'just' hypo - just my own thoughts.
Igennus Super-B Complex - Full spectrum B vitamins plus Vitamin C. Vegan. 60 small tablets. This is in the U.S., but I am pretty sure they sell this brand in the UK as well.
Thanks. I might give it a try. My mum lives in the States so if I can't get it over here I can always get her to bring me some to try next time they visit.
What you are going through. It is exactly how my body reacts everytime I try to increase I have never tried anything that has helped. But I also have never tried anything like different brands of meds. I think it has something to do with the fillers in the meds or that some people don’t react well to the medicine in general. Like having side effects from the med. I have even tried taking a whole year and increase only 5 mcg every 3 months until my tsh got to 2.41 and I was having diarrhea 10 times a day, heart racing, low grade fever, extreme body aches and weakness. And extreme anxiety. I lost one whole year of my life just because I tried to increase my synthroid.
I wonder what it is. But I also think we can't go by blood tests only. If you feel fine with higher tsh, so be it. Same with low tsh, it's not indicative of overmedication. We need to see it both ways, which we sometimes don't as most people are so underdosed by their doctors.
You know that there are people allergic to thyroxine itself? It is possible. I mean of course another alternative is to try t3. Or leave it as it is if you feel well. X
I'm sorry to hear you are having these same issues but it is comforting to know there are other people out there that are going through the same thing as me.
Strength and Sympathy for you j9j8j7 . Have you tried perhaps to discuss with your Dr to add a small dose of T3 to trade for some of the T4 ? That might be a better option for you .
You might also want to make sure that your on nutrients that help our thyroid meds work more efficiently for us . Vitamin "D" /K/2, B-Complex , B-12/folate, Iron if you test low, magnesium, Omega fish oil, vitamin "C", mineral complex.
I would love to try adding a bit of t3 to see if that helped at all. I had just about got my nhs endocrinologist to give it a try when I got pregnant. I got transferred to a different endocrinologist at the same hospital who dealt with all the antenatal endocrinology (pretty sure he is a diabetes specialist). He flat out refused to give me anything but levothyroxine. I've just moved (a month ago) to Scotland and currently getting all my blood tests done by the midwife. She hasn't officially referred me to a new endocrinologist because all the ones at the local hospital are diabetes specialists and she prefers to run stuff by a thyroid specialist at a different hospital. I get the reasoning but has meant everything the last month has gone through a middle man. I think I am going to need to see someone direct but it is a lot of effort to get to the hospital appointments only to be told the exact same thing...
My daughter is on Levo (T4) only also when she is pregnant . You might want to wait it out till after your bundle of joy is born to try some T3 with a little lower T4 . You are under Dr's care and I would trust the Dr's that are over seeing you for a healthy outcome with the upcoming birth of your child . Waiting to make changes till after child birth is the better way for you to go .
I just want to add that this is me too, so want you to know that you are not alone. I'm stuck on 25mgs of levo as I just can't tolerate anything more. Doctors don't seem to believe me. Felt wonderful for a couple of weeks on 50mgs and then was so poorly with anxiety and heart palpitations that I couldn't get out of bed. Gone back down to 25 mgs and I'm coping much better. I'd love to find an endo who understands but sadly not there yet.
It’s possible someone has already mentioned this but from skimming previous replies, it doesn’t seem to have been.
Weight loss can happen if you have hypothyroidism but the logic behind it is usually different to that of hyperthyroidism. Since hypothyroidism can cause low stomach acid and a slower than average metabolism, it means food takes a longer time to be properly metabolized and digested which can result in food staying in the stomach for much longer than is healthy. A lot of complications can arise from this: leaky gut, acid reflux, stomach ulcers, constipation, bloating, trapped gas that is hard to pass and/or just won’t go away, feeling of uncomfortable fullness, etc etc. All that discomfort can decrease some people’s appetite and food intake, which in turn, can contribute to weight loss.
Then there are the few lucky people who have genetically inherited fast metabolisms that were not affected by hypothyroidism. I actually know someone who is tall and slim, and has always had a big appetite, but barely ever gained weight...maybe at most a few kilograms every once in a while but then would easily shed them the moment his life got busier than usual. Then, one day, he was diagnosed with Hashimoto’s which shocked all that knew him, lol. He comes from a family of mostly tall and slim people with very fast metabolisms.
I definitely fall into the later category. I've always had a pretty decent metabolism and tend to lose weight when stressed or sick. My diet is pretty healthy but I can indulge now and again without paying for it.
Yes, he also tends to lose weight when stressed or sick. I also know a few other people like that (but I have no idea if they have thyroid-related issues.) Genetics do usually play a major role in how our bodies react to illnesses and medication.
**Forgot to add that if levothyroxine isn’t working for you, you could try your luck with Natural Desiccated Thyroid (NDT.) Can’t promise it will help but it has for a lot of people that didn’t react well to synthetic medication. Though now is a difficult time to get a hold of good quality NDT medication, due to the recent swine flu and now the current coronavirus.
Please try not to let doctors’ insensitivity and ignorance get you down because most of them are so incompetent in the field of endocrinology and have no idea what it’s like to be in your body and feel what you feel...and don’t really care to imagine or empathize. Many of us here, including myself, have given up dealing with doctors and prefer to get privately tested and give our bodies what they need, as best we can. Taking the right vitamins and supplements that pertain to your personal needs can help, too.
You are four months pregnant have had a house move to another country and have a young baby. That is a lot on your plate. Adjusting to the hormones and being pregnant must be part of the problem . As a matter of interest did you ever get PMT before your first baby? If you did it can be a sign of progesterone imbalance. After you give birth your progesterone goes down within 24 hours and can give rise to post natal depression but with thyroid you can go hyperthyroid with postnatal thyroiditis and then go hypothyroid. May be splitting the tablets taking half a tablet in the morning and half in the afternoon might help how you feel. It's meeting other young mum's at antenatal classes which can help. Expect you are so busy you have no time to rest but you do need rest. Do you feel cut off from your family as well?
Being pregnant certainly complicates things, but it is not like this is a new problem for me. I was struggling with Levo for 5 years before I got pregnant the first time. The difference is that my doctors were/are no longer okay with the compromise I had found between high enough to feel better but not so high the side effects were worse than the disease.
I get very tired of doctors fobbing off systems on pregnancy (like being told nausea is common in pregnancy so that means it couldn't be caused by the increase in levo even though it felt exactly like the nausea I got whenever they increased my dose before pregnancy and nothing like the pregnancy nausea I got in the 1st trimester and it went away as soon as they backed off the levo dose... Obviously pure coincidence).
Agree but if your TSH was 24 that is a sign you were not diagnosed until later you had been hypothyroid. healthfully.com suggests that taking too high a dose of levothyroxine when you are not pregnant might cause your heart rate to alter. If your dose is too high during pregnancy then it might be too high for the baby as well as yourself. A dose which is too high for the mother might affect your heart rate . Taking levothyroxine when pregnant is not the same as taking it when you are not carrying the baby. Your gynaecologist might help you with dose and symptoms.
My TSH was around 3-5 for most of my pregnancy. It didn't go up to 24 until after my son was born and went back down to 5 point something all on its own without changing my levo dose at all.
My daughter is hypothyroid and after giving birth started at 25mg a day. She has been taking a dose of 150 mg a day but has not had levels revised for over ten years. Recent information in article
How to Take Thyroxine so That it Actually Works
tpauk.com thyroid (thyroid patient advocacy)
This is helpful as suggests taking the dose last thing before you go to bed at night is better and more effective. It advises not to take Thyroxine until 3 hours after breakfast as it has lower side effects.
You need to take it with half a pint of water to make sure it reaches the jejunum .
Thyroxine is not absorbed properly if you have calcium iron antacids as supplements or with cheese and dairy at the same time.
Drinking tea and coffee with caffeine can also lower the Thyroxine and it is recommended to cut down on drinking tea and coffee as this lowers the effect of Thyroxine. Taking antidepressants may affect the toxicity in the Thyroxine. To much fluoride in tea and coffee toothpaste can also affect the Thyroxine and your gland. Soy inhibits thyroid hormone function perioxidase which makes t3 and t4 .No need to reply.
Coffee made me feel nauseous during pregnancy and may be will react with levothyroxine with caffeine and other ingredients. Coffee is made from roasted beans as are many teas and contain tannins . These are carbons and may be similar to smoking. Avoiding smoke cured foods, salmon ,cheese , and foods high in cholesterol making substances such as high fat cheese cream may make raise cholesterol and calcium levels making you liverish. If you change what you are drinking throughout the day it might help as tannins can upset iron levels . Some people may be lactose intolerant which is milk sugar. Expect you have been tested for prediabetes during pregnancy. No need to reply.
Update: I doubt anyone will see this, but I've read quite a few old threads in an attempt to figure out what was going on with me so I thought it might help someone at some point to know how things progressed. After considering what everyone said, I made the decision to back off on my Levothyroxine dose (to 75 mcg/day) as I just couldn't mentally or physically deal with the side effects. I also started supplementing with iodine and selenium and went gluten free again (I had done so in the past without any noticeable effect so gave it up after a few months, but I thought that perhaps eating gluten was doing less obvious damage and I best give GF another go).
In any case, after 4 weeks I had my levels retested and my TSH had dropped to 2.6 (0.20-4.50), free T4 12 (9-21), FT3 3.7 (2.6-5.7)... meaning my TSH had dropped significantly and my T4 and T3 both went up. These are BY FAR the best blood results I have had in years and, more significantly, I am feeling better than I was a month ago.
So thank you to everyone for helping me through this difficult time. You all have been far more help than the doctors.
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not in everyone , but in a lot of people. 
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