I have been on Wockhardt tablets since last summer. Long story short, kept on way too low a dose for way too long. But I am now finally on 100mcg a day (3 weeks on Tuesday). My first ever prescription was for Wockhardt brand. My second refill was Teva and I felt awful very fast indeed. By day 5 I swore to never take another and by day 7 (Monday after a weekend of no tablets) I went to the pharmacy and begged for more Wockhardt. I've been on them ever since. I pay for my prescriptions so they let me have the 25mcg tablets in bulk.
But here's the thing. I don't feel any better. In fact I would say I am feeling worse as I increase. At first my TSH kept rising. It has started to come down and 3 weeks ago was at 7.5 from 10.3 the previous time on 75mcg, which is why I moved up to 100mcg. My vitamins are at reasonable levels and I'm supplementing the ones that are in need. My ferritin is a bit low, so I'm supplementing and eating for that one. But I can't hardly walk now, my legs are so weak, my muscles hurt and I'm getting more fluid retention everywhere, but particularly noticeable in my feet and ankles. I would say my brain is a little better, but that could be because I've changed my HRT to give me more oestrogen. The swelling and fluid started long before I changed my HRT so it isn't that.
Could these tablets be affecting me negatively? I thought because they didn't make me have the biggest nosebleed of my life and feel suicidal they were suiting me. But to raise to 100mcg, still with no energy - in fact less, and much greater fluid retention I'm starting to wonder. I know thyroid meds can make you feel worse before you feel better, but so far, for a whole year, I've felt worse and worse.
What do you think?
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FancyPants54
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The Teva episode was October last year, so that isn't the problem.
I don't have Hashimoto antibodies above range. My vits are attended too. I had to change my HRT as the previous method I had used for 3 years stopped working and my hormone levels were on the floor.
Have you heard of fluid retention/swollen feet being an indication of a reaction to the brand?
With a TSH of 7.5 you are still undermedicated. Hopefully you will feel better as your levels optimise.
I know we are all different but I always insist on the Wockhardt brand of Levo as I didn’t get on with Aktavis (Teva). It caused me horrendous joint pains. Wockhardt does not contain acacia which apparently was the culprit in my case.
As SlowDragon says, your being menopausal does confuse things a bit too. I was not diagnosed with hypo until last summer because I put a lot of my symptoms down to menopause.
I assume you know not to take HRT and Levo at the same time but many hours apart?
Hope you start to feel better soon.
Best wishes
Caroline
P.S. Thought this article might be interesting to you. Quite an old one but might well be relevant.
That's an interesting article. My hypo came about with menopause so it's very hard to know which problem is causing what symptom. I've been on HRT for 3 years though, initially a compounded cream, but that has stopped working for me now, hence the change to a gel oestrogen. As I'm struggling with both conditions I'm being regularly monitored though so if the oestrogen does affect the thyroid hormone levels we should be adjusting anyway.
Because my HRT is gel and a vaginal capsule, I don't think the hours apart thing applies. Transdermal application is much different to swallowing tablets. Capsule I insert at night. The gel get applied about an hour and a half after the thyroid tablets are swallowed.
I just don't feel any better energy wise. I never have been sleepy tired, I'm never cold either. But almost catastrophic loss of energy to my muscles has been my major symptom, with weight gain and being too hot/sweating unnecessarily.
I'm still wondering why I'm suddenly getting such swollen feet during the latter part of the day.
All your presriptions should be free. Ask your GP for the form to apply for exemption. It's not just your Thyroid medication that's now exempt from charges but ALL prescriptions for any reason.
Also ask your GP how you apply for a refund on all your presriptions since Hypothyroid diagnosis.
It's not that simple. I use a private specialist for my HRT because my GP's were useless. They were also useless and let me exist for years with over range TSH, I just didn't realise the problem then. It was my private specialist who started me on Levo last year when my TSH rose above 4.8 again. So my prescriptions are private and therefore I have to pay for them. Luckily Levo is cheap. My GP knows I am on the meds and I could get a prescription from them for free, but I would have to take whatever brand the pharmacy has in stock and having spoken to them, they would not let me have the 25mcg Wockhardt tablets for a 100mcg daily dose. I'd have to have a brand that did 100mcg tablets.
Hopefully, in the end, if I can get things to balance, I should be able to get the whole lot - Levo and the HRT preparations I am now using, from the GP and fill out an exemption form. Until then, as I said it's not expensive so I don't mind while I try to find out what works.
Just not sure if my lack of progress and the swollen feet is because I need much more than 100mcg a day to be well or because I'm reacting to the tablets.
That's a difficult one. Why would it be the tablets causing it.
Have you seen the GP about the swollen feet alone? Try for a specialist referal? When you press on the swelling, does it stay indented when you let go?
I don't know why the tablets would cause it, but some people do have brand issues. It suddenly came to me last night to ask the question in case others with brand issues had the fluid retention issue before changing brand.
It probably isn't the brand. I guess I was just hopeful. I have a new GP who has been quite thorough but doesn't seem worried about the fluid other than to test my kidney performance. I'm waiting for the results of that. She has referred me to an endocrinologist but I have to wait until the end of October for that.
The fluid, if squeezed or bound, does leave an indent of sorts. Not massively, but a bit.
Could it be Lympthoedema then? Would your GP do a referal to the Lympthoedema Nurse / Clinic.
You could also have a read through some of the LSN forum posts (Lympthoedema Support Network) when you've got the time.
If your GP won't refer you to anyone with the swollen ankles then GP could prescribe compression hosiery. You could start with knee highs - see if you like them and they work OK for you. You can also get compression tights on presription. I can't because they don't fit - have to be measured in clinic. But if it's just your ankles swelling at the moment prescription for ready mades might work for you ??
Also , any Consultant can refer you to the Lympthoedema Clinic - but you would have to be diagnosed with Lympthoedema.
Wouldn't it be worth doing the exemption form anyway - in case you ever need an antibiotic or any other treatment? For example: Compression knee high stockings for the swelling ankles?
The pharmacy attached to my surgery stopped supplying Wockhardt so I took my prescription elsewhere. Had no problem getting Wockhardt from another small independent pharmacy. Have you tried anywhere else. You shouldn’t have to pay.
I get them from a small pharmacy, but they are starting to squeak about it and want to fob me off with other brands too! They keep telling me they are all the same.
I really don't mind paying at the moment. It's not an issue. Getting well is the issue for me. I've been really unwell with both menopause and thyroid intermingled issues for 6 years now. I've been on HRT for 3 years and not had a lot of success there and I've been on Levo for just over a year and feel no benefits to energy levels. In the past I tried NDT myself but can't now remember why I stopped! Probably because it's hard to get hold of. I've even tried T3 only but again, hideously hard to get hold of, and supply is unreliable. Of all the treatments NDT was the best, so I tried it again at Christmas but suffered terrible anxiety and had to stop and go back to Levo. It's just been a major nightmare. I run my own business. Currently I'm just running it into the ground due to lack of energy and hope.
In my neck of the woods, Lloyds supply Wockhardt as their standard 25 microgram tablet (with their own-label Northstar for 50 and 100 microgram tablets).
I’m so sorry you’re having so many problems and quite understand why chasing free Levo is perhaps the least of your concerns.
In your position, I would be inclined to focus on getting my TSH down and optimising my thyroid hormone levels but I never took HRT for menopause so don’t really understand how that factors into it.
I hope your new GP and the Endo get their acts together soon and help you sort it all out.
I definitely want to get the TSH down, but my FT4 and FT3 are just about middle of the reference range so both my GP and private doctor are nervous. The GP said I was good (!) and the private doctor said I could probably have one one increase in 6 weeks time (i.e. to 125mcg) but that would be it. I am actually scared by both of those responses. Because 100mcg is not making me any better, possibly worse but then this intolerable heat could be the biggest problem for me feeling worse, the thought that I might not get more than 25mcg more is really stressful.
I understand your problem. Your Doctors sound as ignorant as mine was. Test results have to come in and be taken into account before an increase is decided upon. How can your private doctor say that another 25 mcg increase will be sufficient? You may need several increases before your levels are optimum.
As you are paying for your Levo you have no problems with supply. I would post your results on the forum after each increase and see what the lovely, more knowledgeable people on this site advise.
You will feel more in control if you realise you can self-medicate if necessary. There’s no problem with doing that so long as you continue with the six week blood tests after each change in dose and post the results for advice if you don’t understand them.
Along with many other members I use Medichecks for private tests. They are quite reasonably priced.
If I were to be driven down the self-medicated route, how would I buy Levo without a prescription? My private doctor won't want to give me the prescription if she thinks I'm taking more than she wants. Unless I use the GP and her to get two prescriptions and lie to them both! It shouldn't be this hard.
You could ask how other members manage to get levo. I think they would have to pm you as names of suppliers cannot be given on the forum.
However your next dose increase might be sufficient and if not perhaps a very small increase might make a significant difference and yet not cause any problem with supply.
I have just made a tiny increase of 8.3 mcg of Levo which has not caused any problem so far with supply. I just put in a request for a new prescription a few days early and it goes unnoticed!
I want a laughing emoji for you on that one. Sneaky!
I have bought NDT and T3 in the past. Just never realised it might be possible to buy Levo the same way. Thank you for all your help today. I was very down this morning. You have helped to lift me a bit. I work on my own and that's not a good thing sometimes.
I ran my own one-woman business from home until I retired so I know how it impacts on the day if you are worried or anxious about anything. I am so glad if I was able to help a little.
The last one relates to cfs but offers a good expanded explanation of mitochondrial function which applies to thyroid issues as well. Any kind of fatigue/lack of energy etc.
The supplements are focused on antioxidants (swelling and fluid retention as I understand it is a failure to flush out toxins etc) and giving the cells what they need in terms of energy production pre cursors.
I've also just started taking D ribose in my coffee and have to say, I am noticing an effect in terms of a subtle energy boost/alertness vs coffee on its own.
It's just something I've been reading up on over the last few days that I thought may be of interest.
I am very familiar with Paul Robinson's Recovering with T3. He has just had his third book published called The Thyroid Patient's Manual which I started reading this weekend. This time it's a general thyroid book rather than T3 specific. Paul's a great guy. He's done so much for the T3 community.
Everything in those 3 links makes perfect sense to me. I've often described my fatigue as being "tired right down at a cellular level". The interesting thing is that after I'd read those articles...completely by chance happened upon a thread that discusses one of those supplements being used to get rid of Mucin...which I had never heard of and you also mention; and I now realise I have too!
That last one is interesting. It's definitely a thing. It happened fast too. Suddenly my watch was too tight and I noticed by skin looked and felt bloated. In the past, NDT treatment was used to make the patient euthyroid and that removed the mucin swelling.
You are right that you can find better information from the past than you can from most of the current sources!
I don't think I have CFS. I'm not tired mentally, although I get brain fog and can't concentrate well but I'm also menopausal. But sat down I'm feeling pretty normal. I don't fall asleep. I stay up late and sleep well. It's just trying to walk or exert myself that makes me tired. I drag my feet and my legs quickly hurt. It's very immediate too. I am hoping that if I can get my TSH down and FT3 up I can start to see improvements. Thanks for those links.
I got them to remove cfs as a diagnosis from my medical records. I'm not sure I fully belive it as a diagnosis as much of it could be attributed to undiagnosed hypothyroidism and deficiency of certain nutrients.
"It's just trying to walk or exert myself that makes me tired. I drag my feet and my legs quickly hurt. It's very immediate too"
I am going to throw a spanner in the works and say I hate wockhardt t4 when I take it I sleep all day. I love Teva as they keep me awake. Have you been tested for anything else as your fluid retention may be due to another cause?
The Teva made me feel so unwell. The effect was immediate too.
The GP has run a urine test to check for kidney issues, but I don't think it will be that. It could be a thyroid symptom for me, or it could be a menopause/HRT symptom. The mucin under the skin is definitely thyroid.
Hrt increases thyroid binding globulin ....my t3/t4 have gone from being in a good place to practically bottom of range just because I’ve been taking hrt for 5 month ...I wasn’t informed of this myself but had been feeling totally rubbish again so did a bit of research on hrt and levothyroxine... I ordered my Medichecks and the results showed what I had suspected that the hrt had affected my thyroid levels (and I had been taking thyroid meds and hrt 12 hr apart too!!!)When I read my hrt packet it said that thyroid would need monitoring..it seems most need an increase in thyroxine to compensate for taking hrt not that my gp was bothered to inform me of this ......maybe the increased/change of hrt is affecting your thyroid hormone levels making them low and that’s why you are feeling rubbish..
Thank you. I had no idea that would happen. Perhaps, as you say, this is why I feel worse now I’ve changed HRT and am presumably increasing my oestrogen level from where it was.
You would think a private hormonal specialist would know this and explain it, especially when giving the thyroid meds as well as the HRT, but apparently not!
I shall look into this more. I do feel pretty awful now.
Yes you would certainly think so wouldn’t you but we have to find these things out for ourselves and be our own doctors.....I’m still trying to build my thyroid back up as I only found this out 3wk ago ...I have stopped the hrt and I’ve asked for a different one which is lower dose and dose not contain norethisterone as it’s progesterone as I found out (being my own doc again)that this is a testosterone based progesterone and can cause hair loss which I had been suffering from but can’t be sure if it was that or the low thyroid bloods causing it (my own personal experience is my hair shedding is when I’m over medicated though )but didn’t want to take the risk ...I’m going to add this new hrt in when I’ve built my thyroid back up and I’ll monitor myself very closely to see what increase in thyroid meds I’ll be needing due to the hrt ...I wouldn’t even take hrt (my symptoms are not really debilitating)if it wasn’t for the fact our body absolutely loves estrogen and our estrogen receptor cells are craving it and it protects us from so much disease .....I’m not really keen on progesterone but you have to take this to protect your womb if you still have one !I hope you feel better very soon ,best of luck
I have been struggling to find the right HRT and the right thyroid for years. I was off thyroid replacement for a few years and started HRT then 3 years ago. I’ve been on Levothyroxine for 1 year now. It’s been mismanaged, hence still only on 100mcg . I don’t think the HRT has been working at all for ages so I had to switch at the same time as raising to 100 Levo. because I hurt in all my joints and my brain doesn’t work. Now, nearly 3 weeks later I feel even worse. Physically worn to shreds and upset mentally. I have lost my hope.
Don’t give up hope it’s a long and somewhat painful journey ...I’ve been on a right old merry go round myself and still not there ...(see my old posts )I was practically there until adding hrt ...ultimately I want to get back to my 1.5 grain ndt/25mg levothyroxine and a small dose hrt ...I think this will be my optimal ...although nothing will beat those natural occurring hormones that we once took for granted ..I also have hashi which will always complicate things .I don’t know what to suggest to you as we are all so different...you will find something that works well for you...perhaps try staying away from hrt whist you concentrate on the thyroid only ...
Iv been feeling the same, I mean I’m only on 25mg which Iv been on for two years but I personally think I need to be on a higher dose either that or I’m gonna stop taking the tablets cause I can’t live feeling like this x
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