Long story short, I had a hemi thyroidechtomy on 19th July this year after biopsies were indeterminate but tumour was graded a U4 from scans. I went back for the results and was told it was benign (happy!) and that was it, I was discharged. I then received a letter to say the tumour was Hürthle cell adenoma. Ok no problems. Now what do I do?! For 2 years I have gained weight, been tired, diagnosed with 2 kidney infections, nails fallen off my fingers, the skin on my feet dry and broken, dry eyes. I've only just realised this could all be my thyroid!! Symptoms getting worse following my op. I had an NHS test last week (apparently it was satisfactory) so I took some advice from here and had private ones from medicheck these are what I got: TSH 5.19 FT4 12.3 T4 80.7 T3 5.14
I had braced myself for cancer and was so happy when I found out it wasn't. Now I'm due back at work also I've waited 35 years to get married and it's all planned for 17th November this year. I honestly feel fat tired moody and like I'm boring people and just want to get better, part of me just wants to call the wedding off.
Im going to see my GP tomorrow and would truly appreciate any advice. Thanks everyone xx
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Dannim81
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Hello! Thank you very much, I have put them below (sorry bit of a novice!)
TSH 5.19 (0.27 - 4.20)
Free thyroxine 12.3 (12.00 - 22.00)
Total thyroxine 80.7 (59.00 - 154.00)
Free t3 5.14 (3.10 - 6.80)
I have had a vitamin D deficiency in the past, I was confused as although I seem to be getting all the underactive symptoms I'm also persistently sweating (which I thought would help in weight loss but it hasn't) and had heart palpitations before op. Thank you
Dannim: your TSH is elevated well beyond where it should be if you have been diagnosed as hypo and taking Levo. Here we aim for 1 or less so this tells us you are still very undermedicated... if on any Levo dosage. But it sounds like you are not yet? Did your GP test your antibodies at all? When they are elevated it indicates we have Hashimotos - and many hypos have Hashi's - It simply means that you will eventually need threatment in the form of thyroid hormone. Unfortunately the NHS doesn't need seem to recognize these "subclinical results" such as you have (showing abnormal but as yet still too low for most conventional GPs to recognize). The best thing we can do is find a GP who recognizes we are Hypo and agrees to start treatment, but that seems fairly rare here. I suggest you go to the Thyroid UK site and contact them directly for their list of "thyroid friendly" GPs. This may help to get you treated sooner. The only other option here is self medicating. Many here do, but this may be to much to take in as yet so try the conventional GP route first.
Tip: We need to have our labs done first thing AM after fasting to get the highest TSH reading. Which is what you want in order to have yours flagged as high and expedite treatment.
Thank you very much! I was told to expect cancer (unusual I know) I was given the treatment options and survival rates etc. so it came as a great shock that it wasn't and I didn't need a further op. I haven't been put on any meds, I'm hoping they will tomorrow. The first test that was 'satisfactory' with the GP was taken at 3pm but they didn't advise anything different! It was only after looking on this site I realised it shouldn't have been so late in the day. So my private tests (results above) I did first thing in the morning (so thanks everyone this site gives really important info!) it's still early days I know (5 weeks tomorrow since my op). For the past 2 years I thought I've been going mad but I do really think all these symptoms are thyroid related. The tumour was found by accident after I got a referral for a large lymph node on he back of my neck (scanned and told was clear). So does it look like these results will slowly go down following the op? And I will need medication? Ps I will also request for the vitamin tests you have all suggested! Much appreciated everyone xx
Many of us have gone all around the houses enquiring of doctors seeing specialists and not one will diagnose you correctly but will with something else and we're given prescriptions for symptoms when you don't have whatever they suggest at all. I have personal experience.
You are now on a recovery so allow your body to heal and make sure you have optimum thyroid hormone replacements.
Blood tests have to be at the very earliest, fasting (you can drink water) and wait about an hour before eating. Food interferes with the uptake of hormones.
The aim is TSH should be 1 or lower (not somewhere in range as most doctors seem to believe). It will take a while to reach that as an increase of 25mcg levo every six weeks.
Levothyroxine should be taken with one full glass of water when you get up and wait an hour before eating. Food interferes with the uptake of levothyroxine.
Thank you! I'm going to make a stance and hope they will put me on Levo starting from tomorrow at least that way I should start to feel a little better in time for November x
In other countries they prescribe when TSH goes above 3+ but in the UK it is 10. Some never reach 10. I shall give you a couple of links which you can give to your GP if he 'hums and haws'.
The doctors do not know about NDT. It was the very original thyroid hormone replacement since 1892 (before that we just died). It was in use up until the 60s when levothyroxine and blood tests were introduced. It is used by many people but take levo first and it might work well for you.
Hopefully she will start you on 50mcg and 25mcg every six weeks until you feel well and TSH is 1 or lower.
Levothyroxine should be taken with one full glass of water and wait about an hour before eating. Food interferes with the uptake of levo.
Hello all, the GP was better than expected. She listened and took note of all the private bloods. I asked what her results were for last time and she said 4.60 (private bloods showed 5.19) and she didn't rule out putting me on thyroxine at all, but said she wanted to do full bloods first to rule out anything else as giving too much thyroxine can cause cardiac issues. So I went straight and had more bloods done. This time it was first thing in the morning (I hadn't eaten and only had water), they have tested iron, all vitamins, TSH again etc. I'm back to see her Friday morning for results and next steps. I feel a little better, does this sound like she has done the right thing? x
Don't cancel your wedding and you will get better you've found the best bunch of people who will help you all the way. Remember you're not alone all of us have been through so much because doc's don't listen or understand thyroid. You will be beautiful for your wedding.
Yes I think she's really interested in getting this sorted. NHS GPS all too often know relatively little about these complex thyroid issues and all to often the same can even apply to Endocrinologists!.
Please keep us informed & hang on to that wedding!
Please get married you are lovely in someones eyes try to be happy for yourself. You are lucky to have found him/her
Good morning, Dannim. Please don't make any decisions right now about your wedding. Your mind has so many other things to deal with and now that you are getting the info and guidance from this forum about what you need to do to find and demand good thyroid care just concentrate on finding the doctor(s) that can help you feel much much better. I finally saw a new, very effective endo in April who has started me on an effective healing path. In the short time since then I have already seen how quickly many symptoms begin to resolve. I thought I would have much longer to feel sick. Not the case. You say your wedding is in November. It's still May. You have a lot of time to feel well again, especially to heal from all the terrible mental sx poor thyroid treatment causes us. For now, take things one day at a time; find support here; and don't make any major life decisions while you're still in a 'hypo frame of mind'. I believe you might be pleasantly surprised at how quickly many of your problems begin to show improvement. And give your fiance the gift of allowing him to be part of your healing thyroid journey. Good luck and take care xx irina 😊
Sorry for misreading the time frame (9 months ago). I accidentally don't always check the time frame and sometimes post too late. But hope I helped a little. BTW how are you doing? By now I hope you have found a helpful, effective doc.That's 90% of the battle with thyroid probs, unfortunately. But sooner or later the Universe sends the right person. xx irina
Hello thank you! It’s got a bit complicated as I am now Pregnant! Dry early stages, 8 weeks. They’ve told me that can make you hypo so they are keeping a close eye on me! Fingers crossed xxx
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