Starting levothryoxine: to keep going or not?

[MC26]

Hi,

I'm new post here, looking for some advice on starting levothyroxine.

I'm a 26 year old woman, and was diagnosed with subclinical hypothyroidism a year ago, with Plasma TSH at 9.58 mU/L, normal range 0.3 - 4.2mU/L. My T4 was within the normal range so when the GP gave me the option to treat it or not, I decided not to and to see how it went. I was tested for thyroid antibodies and they were present, at 139 IU/ml (normal range <60 IU/ml) and GP thought goitre might be present. Since then, it has gone up and down and eventually I decided to try levothyroxine to see if it would help because I was feeling very tired (needed to sleep at least 10 hours a night, found it hard to get up and didn't feel refreshed), kept getting leg muscle and hip joint pain, got recurrent infections and my hair had become noticeably thinner. I was also feeling depressed. I used to be able to run 3 times a week and at that point I started getting muscle pain after just walking around.

I have been on 75mcg of levothryoxine now for 4 weeks, for the first two weeks I felt much better and had more energy and even woke up before my alarm clock. However, now I have started feeling nauseous everyday and light-headed. I am also finding it hard to concentrate and to focus on words on a page, and generally feel out of it. My mood is also low and I feel teary quite easily, although it is hard to tell if this has got better or worse.

I am not sure now if I should keep going with the medicine or whether it was better before I started taking it. What have other people experienced? Do the side effects go away? I am also really worried about even more of my hair falling out. Is it better not to treat when T4 is normal? It is so hard to tell whether or not symptoms are really related to thyroid or not, or whether this is just 'normal' for me.

Thanks for any advice.

[Rapunzel]

(((MC26))) Hello sorry to hear you're feeling unwell.

Did your GP put you straight on to a 75mcg dose ?That's a bit much to start you off on...50mcg would be more usual. If you have your blood test results with the ranges, members may be able to help. Don't increase your dose further, hope your GP has suggested a further blood test in 2 to 4 weeks and see where you are then. If you've ever had a thyroid test previously it would be good to see where your levels were then, so you know what's 'normal' for you; never take 'normal' as a reading, where thyroid issues are present. T3 is important but not often tested by the NHS. You may want to consider getting your own test organised - have a look here thyroiduk.org.uk/tuk/testin...

[MC26 in reply to Rapunzel]

Hi Rapunzel, thanks for your message and the advice. My T4 was 14.3 pmol/L (normal range 9 - 19pmol/L) in 2015 and is now down to 12.7 pmol/L, so still within the normal range but decreasing over time. My GP suggested a blood test 3 months after starting treatment but I don't know if I should wait that long in case it gets worse but maybe it is too soon to tell.

[Rapunzel in reply to MC26]

This page thyroiduk.org.uk/tuk/diagno...

...especially 'If you are diagnosed' and 'Hypothyroidism' starting about half way down the page will help further

[greygoose]

There's no such thing as 'normal', where thyroid is concerned. When a doctor says 'normal', all he means is 'in range'. Doctors don't understand that it's where in the range you fall that counts, not just being 'in range'.

Your FT4 was just a smidgeon over mid-range. But, your TSH was 9.58, which is high - don't be fooled by this 'sub-clinical' business. You are hypo with a TSH of 3. So, mid-range FT4, high TSH... that suggests that your FT3 was low. Hashi's people are often bad converters. That could be your case. But, you won't know unless you test the FT3 - which the NHS, in all its wisdom, refuses to do!

It's low T3 that causes symptoms, and yours could still be low if you're having trouble converting that T4 you're taking, into T3. It really would be a good idea to get full tests done.

[samaja]

Your levothyroxine may also not help you very much anyway if you are deficient in some key vitamins and minerals which are of key importance for your body.

You might have already read other posts where everybody is always going about such tests as vit D3, folate, ferritine and vit B12 not to mention magnesium, selenium, zinc and a host of others which are also useful to know if possible. A lot of people with Hashimoto's are deficient and need to raise levels of these vits etc. to actually be able to convert their levothyroxine unless they have a gene which prevents this conversion anyway. Your levo brand also might be an issue in itself if the fillers they use do not agree with your body.

The bottom line anyway is you have an autoimmune disease which affects your thyroid, and the rest of your body because of it, and the autoimmune triggers need finding and addressing which is the most difficult thing but can be done. Apart from this forum there are some really good resources on Hashimoto's (books, videos, articles, FB groups) and education is power in this game. All the best of luck on your journey!