Hi, I'm 36 and have been recently told by my gp that I have hypothyroidism. I went to see him as I was feeling very down and super tired and he ordered a full blood check. Two days later he called to say my levels were quite profound and put me in 50mg levothyroixine for a week, and then doubled it to 100mg, which I've been on for 9 days. I still feel awful, if not a bit worse. I no longer feel as down as I did but I'm achy and very forgetful (I forgot my daughters name a few days ago when speaking to a friend) and could spend all day asleep. Also my skin feels like it's crawling and my eyes are really sore.
My tsh level was 34 and my t4 was 6.1. I have no idea what this means and he said not to worry about the levels that it would sort itself out over a few months, but my mum who is a nurse said I should be seeing a endocrinologist and to push for a referral? Is it more normal to see someone other than a gp. He seemed to think it wasn't too big a deal.
Sorry for such a long post, but could really do with some advice. Thanks
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Clarabelle81
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I agree that your doctor was absolutely wrong to have doubled your dose after a week! That will have stressed your body. As RFU said, he could have increased it by 25 mcg after three weeks, but normally increases are done every six to eight weeks. What you could do, if you have a pill cutter, is split your pill and take a smaller dose. That might be kinder on your body.
Doctors never think that hypothyroidism is a big deal, because they know nothing about it. Unfortunately, neither do endos! Most endos are diabetes specialists who think that thyroid is a doddle. It isn't, and they often end up making things ten times worse! So, unless your sister knows an endo that specialises in thyroid, you might do well to keep away from endos!
The best thing you can possibly do is learn about your disease. That's what we do on here. At some point, you are going to need to take charge of your health, so you need to know all about the thyroid - which isn't quite as daunting as it sounds. And, the first step you should take is to get a print-out of your results. Never mind your doctor's old-fashioned ideas - obviously a dinosaur! - they are YOUR results and the law says you are entitled to a copy. You have to learn to understand them so that your doctor doesn't get to fob you off with bad treatment anymore.
Your TSH was high. The TSH of a person without thyroid problems is around one. Once you are on thyroid hormone replacement - levo - you need it to come down to about one or under. Impossible to tell how bad your FT4 is - although it's obviously pretty bad - because you haven't given the range, but I should imagine it's under-range, when you're going to need it well past mid-range. Always give ranges when giving results. Ranges vary from lab to lab, so we need to interpret the results according to the range used by the lab who did the analysis. And you should get a print out of those results because you need to know the range, and what other tests were done. For example, did he test your antibodies? That is very important to know, although doctors don't attach any importance to antibodies at all! Same with nutrients. Doctors know nothing about them, either. So, as RFU said, please do ask for them to be tested.
When did your doctor tell you to go back for a retest? It should be six to eight weeks after starting a dose. It takes that long to feel the full impact of a dose. Replacing hormones is a long, slow job. You cannot rush it (as your doctors seems to be trying to do!) or you will find yourself back at square one. So, 25 mcg increases every six weeks until you fell better, so that could take months, I'm afraid. 9 days is the blink of an eye, where thyroid is concerned. But you will get there, I'm sure.
Thank you so so much- is ft4 the same as t4? He said it should be between 9.9-20.7 and it was 6.1? Also a friend asked what my t3 levels were and when I asked my doctor he said that didn't need testing- is that correct?
I don't know about antibodies tests but he said my liver enzymes were high, but didn't given me any specifics just asked if I drink a lot of alcohol (which I don't, an occasional glass of wine maybe once a month)
I'm to go back in another three weeks to get my bloods redone, and will have been on the levothyroxine for nearly 6 weeks by then.
All in all the doctors have been a little vague- a case of take this tablet and all will be fine in a few weeks.
I can't thank you enough for taking the time to answer me- looks like I've got some reading to do! 😳
There are two T4 tests : FT4 (Free T4) and TT4 (Total T4). But the FT4 gives the most useful information. So, TT4 is rarely done in UK labs these days. So, if someone says T4, I just assume it's FT4. However, if you get private labs done with Blue Horizon, they - for some reason - test both T4s, but they do specify which is which, and the FT4 is the one we look at.
FT3 is a very expensive test - comparatively speaking - so the NHS has decided it's not worth doing. It is, of course, worth doing. In fact, it is vital. It's the most important number. But try telling them that! It's only done very rarely.
Antibodies are not the same as liver enzymes. But, if your hypo, it's not surprising if there is a slight liver problem. Antibodies show you if you have an autoimmune form of hypo - Hashi's. It's important to know if you have it, because of the effects it can sometimes have on your blood test results. Also, if you know you have high antibodies, you can take steps to lower them. But, doctors know nothing about any of that. They don't 'do' it in med school - along with a load of other things which they deny exist! So, that's why they're vague about it. They don't understand it all enough to explain it to someone else. 'Take this tablet and you'll be fine' is just about the sum total of their knowledge!
I have learnt more this morning than 3 trips to the doctors! I'll shall read up and go armed with knowledge next time. I honestly can't thank you enough for taking time out to answer me 🙂
Sorry, can't help disagreeing, there. If you go too fast, you miss your sweet spot. It if takes six weeks for the levo to be properly processed, how can you know if you really need an increase? Eventually, it will catch up with you, and you will be over-medicated. Agreed that you can do that in the beginning, when the TSH is very high, but the nearer you get to your sweet spot, the slower you should go.
Ahhh lot's of things happened 20 years ago that don't happen now! The situation is getting worse. And not only are subsequent endos getting dumber, but the existing endos seem to be suffering from some kind of hormonal amnesia, and denying things they used to know. Lord knows where it will all end up!
Hi Clarabelle81, as greygoose and reallyfedup have suggested, please do get a printout of your results. With a TSH 'score' of that magnitude, that's all the GP is likely to have seen. It may well be that the likes of folate, B12, etc. as mentioned, are out of kilter and need to be addressed before thyroid medication is likely to help, but the GP would have taken no notice whatsoever of anything else recorded. These issues will need to be addressed too. When you get your results, please do post them to this forum.
You poor thing. Must have come as quite a blow hearing the news. It hit me quite hard.
I must say, at least your GP was 'on top of it' ordering your bloods and relevant tests. I had to pay privately for my bloods and really push for them to be done. I was told 'you look fine' and ignored.
I am still on 25mg of levo as I'm still waiting for my apt with an Endocrinologist at my hospital. I was referred around 3+ months ago so it takes a long time. I think they are the specialists and therefore I don't think it will be a bad thing to push for a referral. Even if it's just to 'find a balance of how much levo to take' that will work for you and monitor your bloods etc. I don't think there are many GPs who are 'clued up' or have much understanding of Hypothyroidism - that's my personal experience.
I was, and still am absolutely exhausted more than ever on Levo. I'd say taking it alone hasn't made a difference. The biggest difference for me has been going Gluten Free. I never thought I'd say that, but I have been very strict with it - no beer, odd sandwiches from Starbucks or pastries, anything. It has been hard, especially when you're out somewhere and they don't happen to have anything. I would say 'give it a go' and see how you feel.
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