Back in 2008I retired from work and was given a health M.O.T. from which my doctor told me that I had a underactive Thyriod, even though I had no symptoms.I was prescribed 25mg Levothyroxine, within a week or so from starting the tablets I found I was having to take deep breaths to fill my lungs, this is still the case today, some days are better than others. I have been back to the doctor and seen a Endo, who changed the tablets to a different make but made no difference, I have had various tests , lung function thyriod scan, blood tests ect. but no difference , I asked if I could be prescribed a natural tablet as I am convinced that the synthetic tablet is causing the problem, but was told that there is not one available that is licensed in the UK. I would like to come of the Levothyroxine to see if it does make a difference. Is there anybody that could give me any advice at all about this Please.
Peter.
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sparky100-4
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Dose of levothyroxine should be increased slowly upwards in 25mcg steps until TSH is ALWAYS under 2
Levothyroxine doesn’t top up failing thyroid it replaces it
It’s essential to be taking high enough dose
If starting on levothyroxine at over 65 years old, standard starter dose is 25mcg.....but dose is increased slowly upwards over next 1-2 years until on full replacement dose
Approx how much do you weigh in kilo?
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Breathlessness is frequently linked to being under medicated and/or low iron or ferritin
First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Far too frequently only TSH is tested, which is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
That sounds like a good plan! And feel free to come back with a fresh post when you have. We can all take a look and give you more suggestions on what you can do to feel better 🙂 Take care meantime!
Breathlessness can be a symptom of low thyroid hormone levels.If you are still on 25mcg levo it may be that you are needing an increase in dose.
Often when the thyroid is struggling it takes a rest once the body senses the hormones coming from elsewhere - and your initial dose of 25mcg may not be enough to replace what the thyroid has decided to stop producing. Small doses of levo can make us feel worse.
Thyroid blood tests TSH and Ft4 at least and FT3 if possible will show if you are undermedicated.
Please don't accept the GP or Endo telling you the results are normal. Normal covers a range of results. By seeing where your result is with the range you can judge if there is scope to increase your levo to see if you can be optimal.
You sound under medicated. I’d pay for private tests of tsh t3 and t4 and get the blood drawn locally - see Medichecks or blue horizon or others. Get the blood drawn first thing before you take your levo. Then post your results here. If you’re taking a multivitamin with biotin in, stop for some days before the test as it can skew results.
I love your photo. I really fancy beer and chips now... pubs opening soon!
Hi, Thanks for replying, I need to get my blood test results from g,p. if i can I am on 125mg at the moment. Glad you like photo, I did not realise that it would get posted with my question.
Hi All, Thanks for the replies, I have now had a blood test done with Medichecks, please could someone look and tell me what I should do now. They show that 3 of the tests are outside of the range, can anybody tell me what these mean, thanks. I did the blood test first thing in the morning before taking any medication, also I am at the moment on 125mg of Levothyroxine.INFLAMATION- 0.6 mg/l (Range 0-5)
IRON STATUS- 115 ug/L (Range 30-400)
VITAMINS- Folate- Serum - 6.0 Range more than 2.9
VITAMIN B12-ACTIVE - 107 pmol/L (Range 25.1-165)
VITAMIN D- 77 nmo/L ( Range 50-200)
THYRIOD HORMONES
TSH -4.75mlU/L ( Range 0.27-4.2) *
FREE T3 4.5pmol/L ( Range 3.1-6.8)
FREE THYROXINE - 14.7pmol/l Range 12-22
AUTOIMMUNITY.
THYOGLOBULIN ANTIBODIES 760.0 IU/mL ( Range 0-115)
Hi sparky, I think you should share these results with your doctor ASAP. Your minus figures in tsh and free thyroxine need your gp’s input. Your dosage is not right for you. It takes time to get dose rate and readjusting is very normal. How do you feel, are you running fast or running slow, metaphorically speaking. What’s your breathing like? I suffer with shallow breathing from thyroid also and it’s unpleasant to get in under control I find pre and probiotics taken every day help me, plus exercise like regular walking. Reduced caffeine and no iodine so if you take a multi vitamin which I do daily make sure no iodine in it. I also watch breathing videos via you tube to remind me to breathe from the diaphragm properly and to retrain my bad habit of chest breathing, it happens because being under active causes myothapy I think that’s what it’s called which is some sort of nerve damage to gut and it’s your belly you need to breathe from. One way to check is put a hand on your belly and one on side of rib cage and push out your belly when breathing in for count of 4, hold for 2 and release then release for 7 relaxes me. Gut health is very very important for under active thyroid so also you might need a good digestive enzyme complex as well. Other dietary things that work for under active are low carb and more veggies and fruit and live yoghurt but reduce milk. And I can’t stress enough to keep your caffeine levels in control. See your doctor and go thru your results with them. Oh and take your statins cos under active you are prone to high cholesterol which if not kept in check is dangerous. Take care
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