Should I keep taking levothyroxine?

I've not posted on any forum before, but would really like some help. I am 29 yrs old and for the past 6 years have had symptoms of hypothyroidism, tired all the time, slow metabolism, sunken black eyes, water retention legs, face and tongue, dry skin, itchy eyes, hoarseness, cold all the time, aches and pains, brain fog, constipation etc. I had a blood test back then and my T4 was 12 and TSH 6ish and was told that unless my TSH went above 10 I would not be prescribed anything despite feeling rubbish. They did want to keep a check on it and I had blood tests every so often but my T4 was always in normal level but at very low end between 11 and 13 (range 10-22) and TSH was always out of ref range (0-4.5) being between 4.7 to 7.2.

As they would not prescribe anything despite me just asking to trial it to see if it helped my symptoms they would not agree to it, so I stopped getting tested for it. About 3 years ago I started having terrible joint pain starting in my wrists/thumbs and then my lower back and other joints. Rheumatologist diagnosed me first with fibromyalgia and then I saw a specialist who diagnosed me with joint hypermobility syndrome. I continue to suffer terribly with chronic lower back pain.

I was tested again and my levels were still borderline with TSH 7.5. I really wanted a trial of levo to see if it would help with the hypo symptoms as i thought the pain would be easier to deal with if i didn't feel tired and cold all the time and I was really hoping it might help with some of the joint and muscle pain.

So i paid privately to see and Endo and he prescribed levo for a trial to see if it would help. When I started it I had a few hyper symptoms, headache, insomnia and not feeling well, but that stopped after a few days. I tried it for 2 months and blood test showed my T4 was 17 and TSH was 1.6. But i still didn't feel any better, i said this to the Endo and asked him if i should stop taking it or what else should i do. He just told me to keep taking it as my blood results were now perfect and that would be best for the long term.

So I was wondering what other people think I should do. Whether to keep taking levo as Endo said (50mcg) or to stop taking it or try something else? Its just I was a bit worried when I had the hyper symptoms in the first few days of starting it and I was worried that it could make my pain worse being on it. But I also really want something to stop the hypo symptoms and I really feel that some of my joint muscle pain is connected and could be helped if my hypo was treated correctly.

Just thought I'd add I was antibody negative, don't think I was tested for both though. And also my sister had hypo when she was pregnant and there is few other autoimmune disorders in the family.

4 Replies

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  • Welcome to the forum, Lizbie.

    I don't think you should stop taking Levothyroxine. You are not overmedicated with T4 17 and TSH 1.6, if anything a dose increase might be helpful as most people are comfortable with TSH lower and FT4 higher. 2 months isn't long to work on symptoms you've had a long time. It's not unusual to feel a bit odd initially as your body gets used to the hormone it has been lacking. Fibromyalgia is a common symptom of untreated hypothyroidism. If it was caused by low thyroid hormone your fibro symptoms will improve.

    You should also check your ferritin, vitamin D, B12 and folate levels. Low levels are common in hypothyroid patients and cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms.

    thyroiduk.org.uk/tuk/about_...

  • Thanks for your reply, I will continue taking levo and maybe try upping it to see if I feel better.

    Do you know of any good Drs/Endos to see as my GP is not being very helpful and I would like to be checked completely for deficiencies and maybe check my adrenals. I know my zinc and iron levels are on the low side, iron being 32 (24-400) was told to just buy some supplements from supermarket for this. B12 told was normal, I don't know if I've had any of the others tested. I take calcitrol which is active vitamin D as I have osteoporosis. Was tested for these at an app with oral surgery Drs, as have nodule in my mouth and have been having problems with my taste on/off for years.

    I'd really like to see a good Dr that would look at everything to see if they could help?

  • Lizbie, ferritin 32 is low but NHS doesn't prescribe when results are in range so buy iron tablets and take each tablet with 500mg-1,000mg vitamin C to aid absorption and minimise constipation. You can buy zinc tablets too and it's a good idea to take magnesium when you supplement zinc.

    Ask your GP receptionist for your B12 and folate results and post the results in a new question for advice.

    Email louise.warvill@thyroiduk.org.uk for a list of endos and private GPs recommended by members.

    If you want to check for other vitamin deficiencies you can order home blood test kits and 24 hour saliva cortisol tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

  • Just to help put your mind at ease they were side effects of levo. Not true hyper. I get them badly with dose increases. You could split your dose across the day if that helps, that's more like how your thyroid would naturally output.

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