I have posted a few times previously, looking for advice on trying to get my medication right. It is still proving a challenge.
Drs say my blood results are ‘normal’. My last test showed TSH 1.61 (that’s all they checked frustratingly).
My levo was reduced slightly from 100/75 alternate days to 75 daily in December. Prior to this I was on 100 for years and then reduced after having a baby 20months ago. I haven’t felt right since. I haven’t gone back in the pill and my thyroid issues is an unexplained (not the right word) underactive thyroid. I wonder as I no longer take the pill that I no do not need as much levo. I was diagnosed at 19 a year or 2 after starting the pill. Could be wrong though, these are just my thoughts.
Since lowering the does to 75 daily in December, my severe anxiety symptoms eased considerably after a few weeks. I am sure that by lowering it 100% helped me with that.
i then thought I would try and reduce it further slightly to see if there are any further improvements d I started taking 50 daily for approx 3 weeks. I felt ok and my appetite came back, which had been gone for as long as I can remember.
My question is, do you think that by taking 50mcg and eating much more than normal is a good sign or could it be that I am not taking enough Levothyroxine now and may start putting weight on?
The last few days I have felt my anxiety returning and and I struggling to sleep again.
It’s so hard to know what to do.
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Goinginsane1
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Have you since got your vitamins tested? Most hypo people have low vitamin levels due to poor absorption from food.
50mcgs is really just a starter dose so unlikely to be your optimal dose although you haven't provided blood results.
Read back on your old posts - click on your avatar top right of screen and see all the great advice that you have been given. Try and begin to do what has been recommended.
I can’t find my old posts. Is the avatar my profile? I can’t see my previous posts on there. It would be really helpful if I could locate them to go back over the previous advice offered.
I have not had my vitamins tested since.My Dr has refused to not any tests as she said my thyroid is normal. Even though when I rescued it slightly in December after a discussion with a different dr it helped my severe anxiety symptoms and they pretty much all went after a few weeks. The change was from 100/75 to 75 daily.
The dr only tested TSH more recently annoyingly. I am talking to a brick wall. They won’t do any further thyroid tests even though changing dose has helped even though blood said it was ‘normal’ prior to reduction. I believe I was being over medicated.
I have since wondered whether reducing it slightly again would help me further. I have lowered it to 50 for approx 3 weeks and have noticed an increased appetite but my sleep has been going down hill again and the last few days my anxiety seems to be getting worse again and feel jittery etc. I have started taking 75/50 alternate days this week, but maybe I should go back to 75 everyday.
I thought maybe an increased appetite was a good thing as I have felt hungry for as long as I can remember but maybe it’s not a good thing, maybe it’s because I am not taking enough Levothyroxine now?
My throat feels funny too and starting to feel a bit sick.
the only recent blood result was TSH at 1.61. So annoying! The drs won’t help me 😡
It can be very confusing because there is an overlap bewteen hypo & hyper symptoms. By your blood results you are in no way overmedicated and by reducing your dose it will just make things worse. The symptoms you are experiencing are likely due to your low FT3.
Try asking a more helpful GP for the vitamin tests, explain how fatigued you are. Failing that then you may need to buy a private test, see link with companies & discount codes. monitor My Health is the cheapest but Medichecks & BlueHorizons are popular also.
I am in the process of changing surgeries as the last one is refusing to do any tests. Not sure how they can blank refuse when I have symptoms.
What is making me question if I am/was being over medicated is that since lowering the dose albeit by 25mcg every other day, my extreme anxiety symptoms improved.
Maybe stupidly, but I lowered it further a few weeks ago to see if I felt better again, but maybe it’s now making me feel worse again by doing that and maybe now I’m not taking enough? Maybe I should go back to 75 daily.
if I say to the dr about being a poor converter they will think I am exaggerating as they have told me everything is due to anxiety 😡
Maybe I can actually get some help from the new surgery. I am praying they listen to me and help me.
Having anxiety as a hypo symptom is terrible, I had it myself. It can be extremely difficult to be heard by doctors as they simply cannot look beyond the anxiety. Perhaps write what you want to say down and give it to the doctor as opposed to having to try and remember things on the spot. Also take someone with you if you think it might help. Some doctors are more open minded than others. Find the open minded, helpful doctor.
Going back to 75mcgs sounds like a good idea. You might get some temporary relief at a lower dose but unlikely to last.
Have you tried going gluten free? Dairy can be an issue for some too.
Get the vitamin bloods done as likely you are low in several areas and getting that right will help.
I have written it all down and taken someone with me the last few times yet the one dr just won’t listen to what I’m saying. I come out feeling worse than I went in 😡 I am praying that a new dr at the new surgery will actually listen and help.
I think I will go back to 75 and give it a few weeks to readjust and then ask for another blood test at the new surgery or pay private again. I guess I should wait until the dose is in my system consistently really before doing that?
I eat very little diary as I know it doesn’t agree with me. I haven’t tried going gluten free but I avoid bread.
Vitamins that have been tested on nhs I have been told are all fine and within range, but that doesn’t mean optimal does it. Maybe I should request some print outs of all blood results over the last year/18months. Would they do that do you think?
There were certain doctors I wouldn't accept an appointment with.
You need 6-8 weeks on a constant dose to get an accurate blood test. Book blood test for 9am, fast before it and take levo that day AFTER the test.
Gluten free needs to be STRICTLY gluten free, same with dairy. So many alternatives these days.
Have you tried Aristo Levo brand? Its only available as 100mcgs but you could work out how much to take each day to suit your dose. otherwise Teva is lactose free, bit of a marmite brand but could help/
You are legally entitled to a printed copy of your blood results, ask at GP reception. In England some surgeries will give you access to blood results on the NHS app. Would be good to see what tests they have done.
Hi, I just wanted to say I am in a similar boat and you are not alone. Since diagnosis of hashis and about 6 weeks after starting meds my anxiety and ocd went through the roof and it has been unbearable. I have been trying to find a dose, brand etc which will reduce these symptoms. I have always had anxiety/ocd but I absolutely know for sure that this huge flare up is related to my thyroid. I really hope your doctors will begin to listen to you.
it is so frustrating isn’t it! The drs are causing half of my anxiety coz they won’t listen! I know it’s all linked to my thyroid too and have been saying that for 20months now since having baby. The bloods come back ‘fine’ and that’s all they want to know. They think it’s in my head or just anxiety but I know it’s not.
I found that it helped me to have other people reply on my first post to say that they had also experienced a flare up in mental health symptoms like anxiety, depression and ocd which was linked to their thyroid and some have even commented that once they optimised meds and vitamins their mental health also improved, which gave me some hope. I have mentioned to my gp how helpful I have found this forum (hoping they would join and learn something themselves 😂).
I cut my levo right down from 100mcg daily to 25mcg daily. I felt great for 3 months. Then I became very hypo and very ill. I needed those thyroid hormones!
I worked my way back to 100mcg levo a day but things only really got better when I added a little T3 liothyronine to that.
Please take care and monitor your symptoms so you can increase if necessary.
I cut mine very slightly after a discussion with a dr when my anxiety was severe and symptoms were awful like never before. Even though my blood work said I was within normal range. We still decided to reduce it and after a couple of weeks my anxiety symptoms drastically improved over the next month or so. I believe that the reduction in meds definitely helped me with that.
I have since wondered if I lowered it further it may help me feel even better so I lowered it to 50 and get okay for a couple of weeks. I had an appetite back which I haven’t had for as long as I can remember, but maybe that’s not a good thing? Maybe I am not having enough medication now? It’s so hard to know.
My anxiety is creeping back up again and my throat feels funny and I keep waking up a hundred times during the night again.
I don’t think my drs will refer me to an endo as they say I have nothing wrong and it’s all just anxiety. I know it isn’t!
Youhave been told by doctors that your TSH of 1.61 is "normal"...."normal" is meaningless, particularly after you have been medicated for years
TSH is a pituitary not a thyroid hormone. It reflects the overall level of hormone in the blood ie both FT4 and FT3 combined....it gives no indication of the level of each hormone and therein lies the problem
Little wonder you are being challenged.
For correct evaluation of thyroid function you need to have a full thyroid test to include...
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and TG
You can try asking your GP to test or you can do as many of us have done....have a private test carried out
I'm afraid trying to correct your problem is not going to be achieved by TSH labs alone
My question is, do you think that by taking 50mcg and eating much more than normal is a good sign or could it be that I am not taking enough Levothyroxine now and may start putting weight on?
50mcg is only a starter dose and increased appetite can be a symptom of undermedication. If you are undermedicated weight gain is another symptom, it can also be the result of thyroid autoimmune disease/ Hashimotos ( raised antibodies). Hashi's is a common cause of hypothyroidism.
In addition, the combined pill contains oestrogen which can reduce the amount of levothyroxine in your body though that should no longer be an issue since you have stopped taking the pill. Is that why you reduced the levo dose?
Your GP is not doing you any favours....you need a full thyroid test the results of which will indicate what needs to be done.....that is if your GP is capable of interpreting the labs properly!
While signs and symptoms/ clinical evaluation are hugely important at this point you need to discover your actual hormone levels....it is essential that FT3 is included.
You could start with a basic thyroid test here for £32 with the addition of a 10% discount using the code THYROIDUK10
T3 is the active thyroid hormone essential to every cell in the body. Doctor's often assume that the body regulates the level but this is not always the case ( as I discovered after years of ill health)....many of them only have very basic knowledge of thyroid disease!
Post any results you manage to get and members will advise....but basically you sound undermedicated.
I feel like I’m talking to a brick wall with my drs. They say my thyroid is normal. Even though I’ve explained that after reducing dose slightly my anxiety got better. They did a blood test but only TSH. They don’t listen to me and refuse to do any further tests.
It’s so annoying! I will probably have to pay for a private test again. It’s not fair.
After giving birth my blood test a few weeks later showed I was being over medicated so it was reduced from 100 to 75. Ever since I’ve had to battle through the symptoms and not felt right. That said when I reduced it back down to 75 again in December my anxiety symptoms got considerably better. So I believe I was being over medicated.
I have not gone back in the pill since having child 20 months ago and don’t plan to. I wonder if the pill caused my thyroid issue as I started taking it and then a year or 2 later I was diagnosed with an underactive thyroid. Now I am not taking the pill I wonder if I don’t need Levothyroxine now or it may be a case of just not needing as much but I really don’t know.
Maybe I should go back to taking 75 daily and not 50.
My thumbs nails have dents/ridges in them too which never used to be like that. And my legs and arm muscles have started really aching particularly in bed at night. This happened in December time when my anxiety was really bad prior to reducing levo, every night for weeks. Felt like I’d run a marathon every night.
The yearly thyroid function test is a typical example - as it's generally only a TSH reading.
I'm with Graves Disease and post RAI thyroid ablation and am forced to run my own blood tests to establish where my T3 and T4 readings are and then denied there is a problem when there is complete T3/T4 thyroid imbalance with a T3 at just 25% and a T4 at 100% through the range and instructed to have my dose of T4 reduced.
Having been denied both T3 and NDT through the NHS - I now look after myself like many people on this forum, I run my own blood tests, self medicate with NDT and am much improved looking after myself.
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Further advice please :)
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