Hello, I am almost 5 weeks pregnant and have Hashimotos. I have never taken thyroxine for it since I cleaned up my lifestyle/ diet and symptoms went away. I do take LDN for the antibodies which seems to have been bringing them down slowly. When I was first diagnosed I had been suffering with anxiety, palpations, weight loss and generally feeling jittery. Since my symptoms went away I have been feeling great, I overcame the anxiety which at one point had me pretty much house bound.
My GP has prescribed me 25mcg of vencamil and after just one tablet all of the symptoms I used to experience are back. I feel awful.
I have an appointment in a couple of weeks with a private thyroid doctor and in the meantime my GP has asked me to stop taking the meds (we are also awaiting to hear back from an NHS endocrinologist but it's been a week and was marked as urgent but they don't seem to be concerned).
I also had an NHS TFT done last week but the GP booked it for 12pm so the results weren't accurate (TSH 5.1). Due to my results appearing borderline I don't think the GP is as concerned but having done my own test I can see my TSH is way higher and definitely too high for pregnancy.
My question is, has anyone else experienced this on such a low dose? I've been told that it's too small a dose but I know I'm very sensitive to meds so worried I'm going to have even more issues with a higher dose.
My ferritin is above 100 (I've been working on it since last April) and vitamin D and B12 are all good too.
I've added a photo of my latest private bloods which were done at 9am.
Thank you.
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Statts
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Can you add actual results for vitamins B12, folate & D3?
There is a phenomenon whereby beginning Levo can seem to bring on multiple symptoms and this isnt fully understood. Usually things improve as time goes on and the dose is increased. As you are aware your TSH needs to be much lower for pregnancy. During pregnancy we need more thyroid hormone.
Sometimes people experience worsening symptoms on 25mcg Levo because its not replacing what your own thyroid was putting out.
Which brand Levo did you take? Some brands suit some better than others.
Thank you for replying. I am lactose intolerant so was put on Vencamil which I've heard most get on with. Someone in another group mentioned the negative feedback loop from taking too low a dose which I did wonder is the issue or could it be I'm just highly sensitive.
I feel in such a difficult situation as I can't continue to take the meds as it's left me feeling so poorly but I know I should be taking it. Particularly the anxiety / having a panic attack has triggered all of the old sensations and fears I'd spent so long overcoming.
My folate was tested at the end of last year and it was 26.6 (8.83 - 60.8). I have attached an image of the latest ferritin, vit d and B12.
B12 is only just optimal and folate at 34% of range still too low. Some people do need to buy a separate 400mcg methylfolate to top up a B complex and get better results.
Have you had a full iron panel run? Ferritin can be good yet serum iron low. Suggest you do that.
The longer you have been hypo the harder it is sometimes to begin Levo treatment. Leaving it longer won't help that I'm afraid and you may need to go through a period of feeling worse.
Indeed Vencamil is generally well tolerated although some people do get on well with Teva so you could try that next perhaps.
Thank you for your advice 🙂 I only managed one dose of vencamil. It was pretty terrifying to go from feeling great to feeling horrendous. it's been more than 24 hours and I still feel absolutely wired and jittery and my heart is racing. Surely that can't be normal? I was led to believe such a small dose would be barely noticable.
I've been working with a nutritionist who has me take magnesium bisglycinate , vitamin D3 & K2, fish oil and methyl b complex. I also take ferrous fumarate daily with high dose vit c as my ferritin was 18 last summer and I think that contributed to the anxiety.
I last did a full iron panel in November and I have attached the results.
My doctor did offer me Teva but I've spent so long fixing my gut after chronic IBS I opted for Vencamil.
You could start a new post with your iron panel as that is specialist peoples knowledge and I dont feel up to commenting.
What you have experienced is certainly what a minority of people do experience I'm afraid. Its not that common but will mean you need to go very slowly.
Teva liquid is a different formulation completely to Teva tablets and doesnt contain mannitol which is usually what causes issues. You could try that and then go even more slowly by how you feel.
Welcome to the forum & congratulations on your pregnancy Statts
So many of us felt worse when commencing Levo, with symptoms only improving when optimising on a higher dose (plus key vitamins also being optimal). Personally, I found I had to increase Levo super slowly, adding 12.5mcg alternate days at first, then daily. I also ensured GP specified the brand of Levo I could tolerate on my prescription.
Thank you 😊 ah so perhaps I would have been better off going even lower on the dose and slowly working my way up.
I can't believe I've gone from feeling great to feeling like I want to crawl into a dark corner from just one small dose. Thank you for sharing that it does get better!
I actually specifically asked for Vencamil because I'd read so many great things from others. My GP tried to give me liquid Teva initially but I've just spent 2 years and a small fortune fixing my gut and didn't want to risk the mannitol messing it up.
Yes sadly just the one dose. I suppose it could be a reaction but I'd expect more like swelling or some other reaction. This has made me feel hyper which is how I was at the very beginning of my diagnosis. I even had a panic attack which I haven't had since the height of my symptoms.
It's been over 24 hours and although I feel less of the crushing feeling in my throat I feel very on edge, anxious and jittery. My heart also is still racing.
I was under the impression that Vencamil was one of the 'cleaner' ones available but I could be wrong.
I had read so many great reviews of others taking such a low dose and feeling nothing I was hopeful I would be the same.
Mainly on other thyroid threads, Mumsnet is often my go to for parenting questions and there seems to have been many cases of women like myself who's thyroid is out of whack in early pregnancy and get out on a starting dose of 25mcg. Most state they needed to be increased at the next blood test but the general consensus seemed to be they didn't feel any effects. Perhaps they were already symptomatic they didn't notice how such a small dose was causing added issues.
The need to increase Levothyroxine during pregnancy is as much for the baby as it is for the mom.
The baby relies entirely on maternal thyroid until mid-gestation. Therefore baby can not make any of its own thyroid hormone until then.
That’s why early management of FT4 levels in the earliest weeks of pregnancy through week 20 is so critical.
Do the other forums mention that also?
edit: I’ll also say that studies show that there is about 15% of pregnant moms who do not need to increase their Levo to maintain sufficient levels. But statistically the majority do.
Thank you, yes they do and hence my frustration at my thyroid care thus far. I contacted my GP the second I realised I was pregnant as reading other threads I knew I needed levo asap but unfortunately it seems my GP isn't fully aware how to treat.
Today was the first day I actually started to feel not so hyper with symptoms. I have a call booked with my GP on Monday, I also have an appointment for next week with a private doctor as I am worried that perhaps it's the filler I reacted too although I'd presume a reaction would look more like hives / swelling. I am also going to see if I can get a compound pharmacy prescription as someone further down the thread has kindly suggested Roseway offer this service.
Thank you so much, I guess that's a saving grace (possibly) in this whole situation that my T4 isn't as low as it was previously. I understand the urgency and thanks to everyone's help on this thread I'll be getting myself the correct help first thing on Monday.
Unfortunately I don't think it was pregnancy symptoms. This is my third baby and I usually get morning sickness from about 6 weeks. I definitely feel I've swung hyper and having a panic attack used to be triggered by the internal shake I used to get. I feel like I have high doses of cortisol running through me if that makes sense.
I think also a big giveaway for me was the crushing throat feeling but that seems to have calmed down somewhat today.
I wasn't diagnosed until a year after the second but my GP looked at past results pre children and she can see my TSH was climbing and my T4 was pretty low (I think it was 10.1 in 2015). Both pregnancies were text book it was only after the second and I started to have anxiety out of nowhere and ectopic beats did they run another thyroid test.
I think the Teva my GP was going to prescribe me was liquid T4. Do you happen to know of any other brands.
I wonder if maybe I just need to start very low. When I started LDN I had to take a tiny dose as i reacted to the prescribed dose (although nowhere near as badly).
Some do not tolerate oral solutions (liquid) - possibly partly because of the relatively high glycerol content.
helvella - Thyroid Hormone Medicines - UK
The UK document contains:
Up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and liothyronine available in the UK. These include declared ingredients for all UK-licensed products.
Details of every dosage of each medicine include PL numbers, PIP numbers, tablet markings, product history and links to:
Patient Information Leaflets
Summary of Product Characteristics
Product Assessment Reports
Dictionary of Medicines and Devices (dm+d) entry and current prices
Document has links to:
British National Formulary
NHS Drug Tariff, etc.
PLUS how to write prescriptions in Appendix F.
Also includes links for anti-thyroid medicines (but not product details).
Thank you so much, I'll have a read through. I actually think I may have used the doc previously to find Vencamil as my GP stated Teva was the only option.
It replaces the T4 in your body, it doesn't top it up
So 25mcg is most likely far too low a dose causing symptoms to return.
The usual starting dose of Levo is 50mcg
As the dose is increased your symptoms should resolve.
As the T4 dose increases your TSH will fall because the pituitary senses you then need less hormone it will then signal the thyroid to reduce T4 production via a lower TSH signal
Your TSH is too high but it's only a signal....the problem is lack of thyroid hormones
In any case TSH is not the most accurate marker, it fluctuates throughout the day.
The most important marker is FT3 followed by FT4. Both are on the low side
FT4 16.6 ( 12 - 22) = 46% through ref range
FT3 4.5 ( 3.1 -6.8) = 37.84% ditto
We aim to have both Frees roughly approaching 75% through their respectie ranges
This proves you are undermedicated
The correct dose should resolve your symptoms so a further increase of 25mcg is required next,
Test again after 6 weeks on 75mcg
Repeat test after a further 6 weeks and review results....you will probably need a further 25mcg!
You should have no problems on a higher dose though you can expect to have a few symptoms until the increased dose settles....this is normal and annoying but not in any way dangerous.....unless your FT3 is over range
Be aware that with Hashi's you will likely experience transitory swings towards hyperthyroidism as the immune system attacks the thyroid. During this time extra hormone will be dumped in the serum raising the Frees.....the numbers will fall back after antibodies come to the rescue. Your body will normally cope with this rise and fall.
Your symptoms suggest you have been hypothyroid for some time and for good health require replacement hormone (T4) at a therapeutic level.
Your TSH will fall as your dose increases.
I prefer to rely on the level of the Frees....not a fluctuating TSH whose only real value was to initially diagnose hypothyroidism before medication. Medics started to tweak TSH to create a quick cheap test....and it's unreliability has caused a lot of problems.
Thank you so much for taking the time to explain everything. Previous doctors I have seen certainly were only were really focused on TSH. My current one does consider T4 but mentioned since it's 'in range' they weren't sure if I would need treatment, I went back several times until they agreed to write a prescription (I didn't realise such a low dose would be an issue).
I think you've got to stop referring to levo as 'meds'. I know almost everybody does but it can be psychologically negative because levo isn't 'medication' as we generally know it, it's not a drug. It's the thyroid hormone T4- it's thyroid hormone replacement. And just because you're sensitive to some drugs has nothing to do with how you well react to thyroid hormone.
I think it was insane to start you on 25 mcg levo. It's too low. Especially as you're pregnant and your baby needs your T4. As others have said, it was enough to lower your TSH, so that your thyroid reduced the amount of hormone it was producing, but not enough to replace it. Hence the return of the symptoms. You should ask your doctor to increase your dose as of now.
By the way, having your blood draw at 12 pm doesn't mean they're inaccurate. They're accurate for 12 pm. But at 12 pm, your TSH is at its lowest, that's all. It's highest before 9 am.
I think you've got to stop referring to levo as 'meds'. I know almost everybody does but it can be psychologically negative because levo isn't 'medication' as we generally know it, it's not a drug. It's the thyroid hormone T4- it's thyroid hormone replacement.
Thank you for your reply 🙂 sorry, my mistake with wording and calling them meds. I do see them as a hormone replacement and did tell my GP this when they insisted 25mcg was all I'd need. I kind of trusted that they had experience with this but I've since learned from here they really don't understand thyroid care quite as much as they would like to think.
They don't understand it at all! They think that your dose of levo 'tops up' the amount your thyroid is capable of making. It doesn't. It lowers the TSH so the thyroid stops making hormone. And 25 mcg is highly unlikely to be able to replace it, let alone raise levels.
Words are very powerful things. We have to be careful how we use them.
I tried explaining that to my GP once before that they aren't giving me a vitamin and a paediatric dose won't really help. I was met with "that's not how we do it" 🤦 since they are the medical professional I went with what I was being told...thank goodness for forums such as this. Thank you so much for your (and everyone's input) 🙂
Congratulations on the pregnancy! I’ve nothing practical to add regarding medication. I just wanted to let you know that the ranges are different for pregnancy. It should be below 2.5 in the first trimester. I don’t think the GPs know this and I know I had to wait until I was 14 weeks pregnant for a consultant. You can read more here: btf-thyroid.org/thyroid-dis... . Sorry to worry you but better to know so you can advocate for yourself.
Thank you 🙂 yes I did know this and I went straight to the GP when I got a positive test as I'd only had a TFT the week before so knew I was out of range. I have quoted British Thyroid guidelines of 2.5 TSH or below several times but just got told to hang on for my referral. The doctor said they were happy to give me a prescription for levothyroxine in the meantime and here we are...25mcg was way too low.
Congrats on your pregnancy, In my experience you need to get help to reduce the Tsh asap while working on other things. Have you been taking LDN for a long time? It could be side effects of that too in some ways. Apparently there is not much study on it especially among pregnant women.
Thank you, I've been on LDN since August. I never managed to get to the full dose of 4.5mg and settled at 3 as that was where I felt best. LDN has helped with the antibodies and my FT4 is higher but my TSH has also been creeping up since I started it.
Yes Like I said LDN could have side effects and when you say LDN reduced your antibodies, do you mean thyroglobulin or TPO? Also have you measured antibodies before and after taking LDN? Cause technically if your thyroglobulin & TPO had reduced, you should have not got rise in your tsh! Unless something else has caused inflammation in there!
LDN has reduced both although it seems to have had a greater impact on my TPO which was at 255 in October when I initially tested after starting. I was baffled by the rise in the TSH too and did ask in a couple of LDN groups I'm in but since my T4 and T3 also rose I didn't follow it up too much. From memory I think my T4 was around 12.2 in October and now it's sitting higher at 16.6
Maybe it’s best to stop LDN for now and just rely on levothyroxine or NDT (T4 & T3), however you know best for yourself. So investigate and think throughly before taking that advise. In my experience, rising tsh is not a joke and can affect body’s pathways in different ways which could hurt you or the baby. Hope everything will get better soon.🙂
I have considered stopping LDN and may do so although it has definitely been helpful at lowering the TPO somewhat and from reading other peoples experiences it can take a while to get the numbers right down. I think I need to do some more research as to what's the best way to proceed.
As for LDN groups, there's a couple on Facebook I joined and they are pretty helpful. The main ones are 'LDN for chronic illness & infections' and 'Low Dose Naltroxene and Hashimoto's'
hi there, have you tried Roseway labs? They have a private prescriber and can give you levothyroxine compounded capsules which are colour free and rice only filler. 2 years ago I was undiagnosed, my TSH was 6.5, I found out I was pregnant and the doc prescribed 25mg levo Teva and immediately had very bad reactions, hives all over body and heart palpitations. So doc said stop taking, until midwife or nhs endocrinologist could advise, they didn’t get back to me in time. Unfortunately at 9 weeks I miscarried as my TSH had shot up to 12.8. After that incident I went private and was advised to get my TSH below 2.5 before I tried again. I managed to get my TSH down to 1 took 6 months with the slow increase in the levothyroxine compounded drug, with that under control I was able to carry a pregnancy. I hope you get the help and support you need to see you through this pregnancy. 🙏🏼
I actually get my LDN from Roseway, I didn't realise they did levothyroxine too! Your story sounds very similar to mine and I'm sorry to hear about your miscarriage. It's dreadful how we're just left like a sitting duck to either miscarry or maybe be one of the lucky ones and get the help fast. I really appreciate everyone helping me on this thread, it's crazy how much we need to advocate for ourselves to get the correct treatment.
Can I ask what dose Roseway started you on? I'm just wondering if they will dose me properly as suggested in this thread or if they'll also try and start me off at 25mcg (even my private doctor offered me a starting dose of just 25mcg).
Well I saw the endocrinologist first , in between getting the Roseway he was like take half the Teva tablet 12.5mg and see what happens, I did that for a few days and I had bad pins and needles in my fingers, he tested my blood and saw my TSH drop marginally from 5.6 to 4. So he was like ok I can see you respond to levothyroxine. He then said I needed to start on the 25mg Roseway for a few weeks, before increasing my dose, to get used to it. He was very cautious and as I said it took 6 months for him to get the dosage right. In that time frame I read online about the formula should be body weight in kgs x 1.6 should equal the dose you should be on, always round up to the nearest rather than round down. Plus when pregnant increase by 25mg. So for my body weight 69kgs my dose was 125mg, it took 6 months to get to this. When I asked why he didn’t use the formula he said he was worried about me having an allergic reaction. After that I was pregnant again so did my own research, asked the prescriber at Roseway to give me 3 different bottles of compounded levothyroxine, 25mg, 50mg, and 100mg, so that I could adjust my dose. I went from 125mg, to 150mg alternate days. Then I increased to 175mg, then 200mg, etc As the pregnancy went on I needed 250mg when I entered the 2nd trimester to keep my TSH at 3. The more the hcg hormone goes up the more you will need to monitor your bloods. I was getting my thyroid checked every 3 weeks to make sure it was in the zone. As they are capsules you can’t break in half that why it’s important to have the various doses so you can adjust accordingly. I have never experienced any side effect from this drug even when I was on the higher dose.
This is so insightful, thank you so much for sharing! That's great to hear you got yourself sorted in the end. Based on the calculations I should be on 100mcg plus an extra 25mcg for the pregnancy, so I am being massively under dosed! I think Roseway might be a better option for me to try. Thank you so much for the information, I really appreciate it 🙂
That's a good idea thank you, although will I not likely experience the same symptoms all over again seeing as I'm under dosed by 100mcg? (Based on the calculations of weight in kg x 1.6)
That's what my GP seems to think but based on the helpful comments on this thread it seems being under dosed is the issue and why I've had such horrendous symptoms after being symptom free for a couple of years. I'll contact both Roseway and my GP first thing on Monday.
Yes, see what the professionals say. They may be like start on 25mg for 1 week, then have a blood test. Then increase to 50mg etc. It just depends on how well your body absorbs the compounded levothyroxine. You don’t want to go straight on the higher dose and put the body into shock. They should be able to see if your TSH drops after 1 week what you should increase to.
My endo was like because it’s not a regulated drug it’s harder to know how the body will react and how much you need. I was allergic to the synthetic fillers in normal levo, I am also lactose intolerant and that is why they put me on Teva, but it was the mannitol in that that gave me the severe reactions. crazily those synthetic fillers are what can help the body absorb the levo faster and usually on the normal levo you probably wouldn’t need such a high dose. I was convinced the compounded wasn’t working , 6 months was a long time to wait, but once I hit the 125mg my TSH has been stable and normal. After the pregnancy I went back to my normal 125mg and I have still kept my TSH =1. T4 = 4.5.
I've heard mannitol isn't great for some people and I've had terrible gut issues previously (which I think is how the Hashi's started) so wasn't keen on wrecking all the hard work I've done at fixing my gut. I do wonder if my body would be shocked at a higher (normal adult) dose so perhaps if I went with the cleaner levo from Roseway and just start slowly I may get the help I need and the TSH before it's too late.
That is crazy that the synthetic fillers work better! I'll hope that I get the right dose and my body responds 🤞🏼 I will keep this thread updated.
Thank you so much for your help, I feel less lost now I know what I need to do 😊
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