Hello all. It will be 8 weeks on Wednesday since my last increase of Levothyroxine (up to 87.5mcg of Accord taken as advised) and the doc has approved THS, RT4 and RT3 for my next bloodtest. However, to say that I have not reacted well to either of the increases is an understatement. I feel that for 8 weeks after the increase I am in the depths of hell. Sounds dramatic but what I seem to go through is beyond my capacity to deal with. I thought it was just the first increase that would be bad so I came to the 8 weeks, and merrily started the next increase. But no, the same thing happened, and 'luckily' I had the Christmas break to spend in bed. Back into the depths of despair. I was once again suicidal, totally miserable, wanting to die, severe exhaustion and fighting to get out of bed to get to work (I started a new job end of november) no, energy to do anything, plus the severe anxiety and hypervigilance, nervousness and then there were the physical symptoms such as the itching, dihorea, bloating, breathlessness, weight gain, palpitations etc etc. I feel after 8 weeks or so that things settle down and I pick up again. I'm 49 with regular periods, they were disrupted by the increase but now regular again. I don't know what to do. There is no way I can tolerate again what I have been through twice now....i wouldn't make it. 8 weeks is a long time to suffer like that. Like many of us I have always suffered with anxiety and was put on antidepressants in my early 20s. I only take 25mg of sertraline these days but don't think it does much. I also have CPTSD from attachment trauma of that's useful to know. I actually feel that the increase sends me into a retraumatised state? If anyone has been through this or has any advice I'd greatly appreciate it. I hope this post is not upsetting or triggering for anyone reading it, but it does not seem to be the norm. Thank you for reading.
Advice on next steps please: Hello all. It will... - Thyroid UK
Advice on next steps please
you poor thing those symptoms are rough between increases.
Post your results for TSH FT4 and FT3 when you get them. With ranges. That will be your best indicator.
How are the vitamin levels? iron status? Gut health?
Accord contains lactose and I lasted 24 hours on it and had to take it back to the pharmacy and ask the GP to re prescribe. It made me feel awful. Could it be that? I had Teva for over 12 months which was ok for me but lots can’t tolerate the fillers (mannitol/acacia). My pharmacist just got Aristo in and I have to say it doesn’t make me burp like the Teva.
I had to really pace myself with increases, starting every other day for a week. Did you try splitting the dose morning and night or mornings and afternoon? Just a thought, sometimes helps.
🌱
I've been on Accord forever. I tried Teva last year (accidentally when the doc told me to go up to 75mcg) and it made me feel very ill physically. Ferritin is climbing up but by no means low, I take Ferrous Fumarate 3x day but just had a, weeks break due to diahorea. I take the usual Thorne B complex and Vitamin D as well as some other Vits. I was strictly Dairy and Gluten free for three months this time last year, felt good for a week then back to the usual. I'm predominantly still free of both, but things sneak on at the weekends. I haven't tried dose splitting. Thank you for your reply. xx
I would recommend trying a lactose free Levo. It can do strange things to those sensitive to it.
Do also get your vitamin levels checked, they are highly likely to be low due to poor absorption from low stomach acid that hypos get. Low vit levels can play into symptoms and mean our thyroid hormone doesnt work properly.
The Teva also had a strange effect, initially the doctor told me to jump up to 75mcg after being under medicated for so long. After 5 days i was quite ill. I went back to 50 of the accord, then once feeling better, every 3 days I took a 75mcg, was feeling awful, then after asking the forum I realised the Teva may not agree with me. But then the smaller Accord increases have not been a picnic either. I will ask the doctor to add the key Vits but I don't think they are that low. Last test Vit D was 80 something. I was taking a high dose B12 for a year but just switched to Thorne B Complex. A few months back I started a separate folate but stopped when I started Thorne.
Aristo is a lactose free brand but I believe only available in 100mcg dose size. You could cut that up or take only x days a week to make up your dose. That or ask GP to try liquid Levo. It is expensive though so they might be reluctant, also its been in short supply for months.
You haven't mentioned ferritin and that can be a real problem when low causing symptoms.
Thank you. I will speak to the doctor about Aristo /or liquid Levo. Ferritin is always a struggle, hence I take it three times a day. I would say its between 80 - 90 but I'll get it checked. Is it normal to feel like I do while increasing....or common? Is that what I should expect? I remember years ago when I tried the pill, that made me feel terrible as well. Perhaps I don't react well to hormones in general?
Looking through previous posts can’t see any mention of vitamins results apart from ferritin being low
You need vitamin D, folate and B12 tested
What vitamin supplements are you currently taking
Sorry, as above for the 4 main ones but others include C, E, Calcium, 5HTP, LTheanine, GABA, Magesium, Sam E, Turmeric, probiotic, Omega 3, mushroom complex.....
wow that’s a lot, have you figured out if it’s any of these or the combinations of these that could be affecting you? I had a probiotic that floored me, had to stop. Do you take them all away from Levo? I have low ferritin too but have been advised to avoid ferrous fumarate as it’s so harsh on digestion and I have the typical Hashi gut. Someone suggested heme iron was gentler, another person recommended maltofer, I need to look into these. I believe iron needs to be 4 hours from Levo, magnesium too, I hadn’t realised this and was taking magnesium 1 hour before Levo, which was affecting absorption. Not sure it that helps or not but there could be some combination or timing issue making you feel so unwell.
Feel better soon 🌱
Yes, all 4 hours min away from Levo. Most of them are amino acids that you would get from food, mainly for my anxiety, but I do take your point. I want to reduce them at some point. I only feel terrible for the 8 weeks or so after the increase, then I bounce back?? I think the next step is a functional type person perhaps. I really appreciate your comments and thank you for your reply. Be well. xx
Kazzylou ‘The Norm”? This is a difficult one to answer. It is the norm BUT it should not be - it does not have to be! It’s just the shocking way us thyroid patients are treated. I would say everyone on here has their own package in differing proportions. Some with more of this or that, or less. Everyone on here has problems with their treatment otherwise they would not be on the forum. There may be a few people just moseying around providing themselves with a more information of thyroid issues and treatment patterns. What you say does not sound dramatic - not to us. You are dealing with your package the best way you can. This is the correct place to come to get overviews and specific help. I recently needed advice and have received so much help it’s going to take a bit of working through. I just feel so grateful and relieved to be able to come to the forum with my thyroid issues. I know others have already replied to some of your more specific issues. Hang on in there. Sometimes just the smallest adjustment can make the biggest difference.
Thank you 😊
I agree with the other comments. Some of can only take Levrothyroxine with lactose, some of can only take the lactose free versions. Check the ingredients leaflet just in case the fillers have changed. I know when I was given Teva it was a though I was on no medication at all. Hope you get to the bottom of it.
Thank you. 😊
I have been on thyroid replacement since 1991. I am on .137 mcg. My TSH was extremely low, so they lowered me back to .125mcg . I have gone up and down over the years. One year due to the extremely hot weather ,I had to lower my medication, and went back to my normal dose later. I am also on sertraline . Low thyroid many times is caused by Hashimoto’s Thyroiditis . Your immune system attacks the thyroid hormone your own body makes ,and does not recognize the replacement therapy. Hopefully then the immune system calms down ,no longer in the attack mode . It’s another autoimmune disease that is very common in women.
I’m getting ready since the TSH was so low, to do another thyroid antibody test.
Tg-Ab =Anti-Thyrogloblin antibodies
TPO = Anti-thyroid Peroxidase
AMA = Anti Microsomal antibodies.
I would like to know why women get more autoimmune diseases than men ??
That’s racist ! 🤣😂
I pray that you get more answers. In 1991 I was diagnosed with CFIDS, Chronic Fatigue and Immune Dysfunction Syndrome. Along with that came Hashimoto’s Thyroiditis. It’s been a long haul, but you take a day at a time and keep moving. You never give up, but you must give in and not try to be an athlete when your body says “no way”. There are many other joys in life !❤️
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