Hi, I was diagnosed with Hashi by a private endo back in July on bloods from May: TSH 5.61 [.3-5.5], free T4 15.4 [12-22] and highly positive TPO. My TSH was 4.87 [.3-4.2], free T4 15.1[12-22] in Jan 2011 but no action was taken by the gp then (the ends now told me that I should have been put on Levo back then).
I was asked to start at 25mcg for 2 weeks and increase to 50mcg afterwards unless I get palps, in which case to drop back to 25. As I had to do a scan of my thyroid before Levo I only started 2 weeks ago. I know it is not supposed to work this quick and maybe there is an element of placebo effect but from day 1 (I take Levo in the middle of the night) my mood was uplifted and I occasionally had thrilled tingling in my back. My body was happy and so was my mind, my brain fog improved and my stress and anxiety reduced significantly. My husband noticed the remarkable difference in me too, so I know it's real. On day 7 I hit the wall, I could not even read what was in front of me I could not concentrate on anything at work and I decided to up the dose then. I felt fantastic again from the next day. So I've now been on 50mcg for 7 days but this morning I felt a bit jittery. It's not what I would describe as palps, which I had before Levo when my heart would tense and skip a bit or flutter on occasions. It is more like an increased heart beat with gentle nausea and a tension/dehydration headache. I got this split second sensation of being on the verge of passing out and a massive fear/panic of that happening, my heart rate shot up for about 2-3 seconds and then it receded - I've had similar sensation a handful of time over the last couple of years but put it down to drinking wine whilst being dehydrated... I am better now (5.5 hours after my last dose) but still have headache and feel a little anxious in my chest, if that makes sense.
To complicate matters I've also been taking 100mcg of spironolactone for 4 weeks and so I don't know if the feeling I have today is from the dose of Levo or a side effect of spironolactone, as they appear to be the same. I'm going to pop to the hospital this morning and do the kidney function test I.e check if the potassium level is ok.
I am, naturally, more happy to stop spironolactone as I don't even know if it's worrying and it can have dangerous side effects. What are your views, please, is this likely that it is the Levo dose, which is too high? Is this something that my body just needs to get through to get used to the t4 levels or does it mean that the dose is just too high and I should go down to 25 - if so is this temporarily because I increased the dose after 7 days and not 14 as prescribed or does my body not tolerate 50? I'm really confused and need some opinions, please!
Many thanks for your help.
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Sybilla14
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It is not unusual to get a 'lift' when we first take levothyroxine but 25mcg is a very small dose and 50mcg is the 'normal' starting dose when TSH with 25mcg increments every six weeks.
If our dose is initially too small we can get a 'rebound' and are surprised we might feel worse.
It takes about six weeks for a rise in dose to take effect and at present your TSH is too high for you to feel well. The aim is a TSH of 1 or lower.
Your doctor should have prescribed levothyroxine for you when you had antibodies even though your TSH was below the number for being diagnosed with hypothyroidism (which is 10 and is far too high). However with antibodies you should have been prescribed for your Autoimmune Thyroid Disease (the commonest form of thyroid gland dysfunction) and called Hashimoto's.
The antibodies attack your thyroid gland and sometimes it is too much and you feel hyper.
Going gluten free can help lower the antibodies and members say they have felt much better.
All of the symptoms you state can be usual when on levothyroxine until you reach an optimum dose which means you feel well with relief of clinical symptoms and not by the doctor stopping your dose if your TSH is not nearer 1.
Because becoming hypo can be very slow and may take several years we become used to our body being in a certain 'state'. When the hormones are added it will also take some time to gradually increase and feel well (Not Years I'm glad to say).
For what were you prescribed spironolactone?
You should have a blood test every six weeks and it should be the earliest possible and fasting. Also allow 24 hours between your last dose of levo and the test. As you take yours in the middle of the night, miss this and take after test and you can also take night dose as usual. Some take the whole week's dose once a week but I wouldn't like to try that
Doctor should also check B12, Vit D, iron, ferritin and folate are at optimum.
Always get a print-out of your results with the ranges for your own records and post if you have a query.
Hi shaws. Thank you very much for your reply. I've had increasing TSH for about a decade and I requested bloods every year to monitor for myself, which in truth is the only reason why I got diagnosed as I kept pushing GPs to test. This includes vit d, ferritin, b12 and I am not optimal yet in either, though supplementing with quality sups. I've been gluten free for nearly 3 years (I'm very strict with it) and eat very cleanly, mostly organic and non-processed. So I've been doing my best to get to the optimal state before I start Levo (I knew it was a matter of time) to eliminate other causes.
It was from reading this forum that I know the 25 dose was low and decided to up it earlier than the endo requested, when I got a slump. I am really really relieved that you say these are normal symptoms of my body adjusting to the hormones rather than there being something more sinister going on. I worry that the gp may say I don't need Levo and take it away. I'll just take it easy when things like this happen again and try not too worry about it. The endo was excellent and he wrote to the gp to aim for my TSH below 1 and the gp was accepting of it, so I am optimistic I'll get there eventually. I've already got the blood test request from the gp too, just waiting for the next 5 weeks to test.
The endo also diagnosed me with pcos and spironolactone was meant to help with hirtusim and cystic acne but I was reluctant to take it, if I'm honest. Think the thyroxine replacement will probably also help regularise the androgens.
Many thanks again, greatly appreciate your support.
Omg shaws! TSH of 100, was your thyroid even producing anything at that level?? When you say you felt worse on Levo, was it temporarily when you started it or did you have to try ndt or t3 to shift your symptoms?
The Endo (NHS) was good and added some T3 to T4 and in an instant I felt much improved.
When I had my next blood test I was phoned by the Nurse and told to stop T3 and I said 'in no way' (I was also going on holiday in the following few days). I was told to reduce T4. I then knew I had to look at other avenues as my dual dose would have been too small.
Thyroiduk.org.uk was very helpful and I saw Dr Peatfield who had to resign his licence because he was being pursued by the ? and had to resign his licence in order to continue to help struggling people. He himself has been quite unwell with cancer these past couple of years.
I also saw Dr Skinner, (RIP) who had the same training as Dr P. Dr S was horrified that people who were showing clear signs were undiagnosed and unmedicated and he prescribed.
He tried to engage with the Endocrinology (he was a virologist) - they refused his invitation to a Conference Dr S had arranged to discuss the awful regulations and very unwell people. (He and Dr P were of similar age and thus were trained as students properly. i.e. look at the patient who will display certain characteristics/symptoms and a trial of thyroid hormones isn't dangerous).
On the day before Dr S's Conference the last Endo withdrew so there was no Conference. Dr S appeared before the GMC about 7 times and the strain and it certainly wasn't his patients, so his staff and patients believe the strain caused his early demise due to a stroke.
He diagnosed my daughter whose husband said it was the best money he had spent as Dr S prescribed levo and she felt so much better within a couple of days. He also diagnosed many other people and both doctors saved many people's lives.
I myself tried several NDTs and then T3 only and that's suited me best. My GP also prescribed T3 but I've had some issues with MP T3 and at present source my own.
We can recover but we have to have doctors willing to let us trial other than levo if not recovering as we should.
Thanks Shaw. What a journey for you. I have heard about Dr S and his experience with the gmc, it is hard to believe this is not a witch hunt story from the Middle Ages... I've read Dr P's book a while back and I believe he was running clinics quite recently. Both very brave Drs.
Such sad stories from so many people, fighting to get help. So pleased that you got support and found your way to recovery. It is invaluable to be able to get to a doctor who understands thyroid as there is so much misinformation in the mainstream. On the visit when I asked to be referred to the private endo, the gp said to me "you're NOT hypothyroid". Whilst for about 3 years I've been battling with declining cognitive function, tiredness and nigh sweats with no help from any doctor I saw (and I do carry my thyroid blood results collected over the last decade). The worst of all was the immunology prof I saw 3 years ago, when I was at my worst (since I've changed my lifestyle a lot and have been supplementing so feeling a bit better), who told me all the right things about me needing to be on thyroxine as my thyroid is failing yet in the letter to the gp he diagnosed me with CFS and recommended CBT therapy. I really can't get my head round why the thyroid tests are so unreliable and undermined by research yet no one is coming forward to establish the new ranges? Surely this would be common sense?
Thank you for the link. I intuitively feel improving my thyroid state will help with the other imbalances. It's just taken so long and slowly declining it will take a while to get there. Finding this forum and getting support and understanding from fabulously helpful people like you helps so much with getting through everything. Many thanks!
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