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.
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).
It replaces the T3 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.
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.
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