Looking for some advice, I've recently been diagnosed with hypothyroidism and been on 50mg of levothyroxine. I had follow up bloods last week and my TSH levels have reduced from 23.6 to 6.7. The doctors have requested for test to be repeated in 3 months and continue current dosage.
I have for a few years noticed my Heart Rate is on average resting 47bpm , now it makes sense that this is connected with hypothyroidism. Even though I've been taken the medication this hasn't made any difference to me heart rate.
Lately I have been told about my snoring, so been keeping track of my pulse ox (garmin watch) through the day and night. On average this is 93% but dips into 80s through the night. Is this another symptom or should I be seeking medical advice?
I have been told by the GP that it can take a few months before levothyroxine makes any improvements so not sure if to report this new finding? Thank you
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Carleylm1983
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As 50mcg is the usual ‘starter dose’ of Levothyroxine, it’s likely you will need further increases to get TSH lower (& alleviate adverse symptoms). TSH should be under 2, with most members here reporting feeling best when this drops closer to 1.
I would ask for an increase from 50mcg to 75mcg. Many members are fine adding 25mcg in one step, but I personally like to introduce 12.5mcg as a first increase, then add a further 12.5mcg when ‘well tolerated’ (& find a pill cutter useful for this).
For a full picture of your thyroid health, it would be good to see FT3 and FT4 in addition to TSH. It’s also useful to have antibody tests (to see if your hypothyroidism is auto immune, AKA Hashimotos). We also suggest key vitamin tests (ferritin, folate, vitamins D and B12) as having these optimal supports thyroid health.
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
I started to take Kelp with my supplements in the morning which helps. Make sure you do not drink or eat for an hour after taking the levothyroxine as caffeine and dairy interferes with it
Kelp (and the iodine it contains) is not something those of us with hypothyroid should take without further research to understand the risks.
The iodine levels contained in supplements are usually unlabeled or inconsistent, which is an issue.
Our Levo tablets contain the required iodine we need, so taking an unknown amount of more is also a risk.
Iodine is key to thyroid hormones, and this can create confusion about the role of iodine when when hypo and taking thyroid hormone replacement. It’s unsettled as to the full risks of too much iodine.
Be ready for GP to not know much about how to manage hypothyroid patients
Levo doesn’t “top up” your own thyroid output…..instead it replaces it
It’s very important to be on high enough dose
Request increase in dose Levo to 75mcg as outlined by Buddy195
Which brand of Levo are you currently taking
Ideally don’t change brand when increasing dose….only make one change at a time
Retest thyroid levels 8-10 weeks after increase to 75mcg daily
On levothyroxine TSH should always be below 2
Was the latest test done early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Has GP tested vitamin D, folate, B12 and ferritin
Also important to test thyroid antibodies
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Thank you, bloods were done early morning with only water intake. First T4 bloods were done and result was low at 6.7, since taking Levothyroxine this has now increased to 10.1 which they have said is normal. No tests for T3 / Vitamins have been done I will try and look for somewhere private I think for further testing.
This is incredibly insightful. I apologise for jumping in but I'm also newly diagnosed and trying to read-up about my diagnosis so that I'm better informed for treatment as I don't feel supported by my GP.
Out of curiosity, you state that most Hashimoto's patients also have goitre but how can they test for this? I have Hashimoto's and I believe I have another autoimmune issue underlying but I do not know how to articulate this to my GP as they believe my TSH, which was 35, will come down with a minimal does of Levo.
Do you recommend asking for the added vitamin tests?
Please could you start a new post. Your query might be missed by many. I think you might benefit for more detailed advice but we will likely need to ask further questions, but the original poster of this tread will be notified of every reply.
Your TSH is very high you will likely need increases. Goitre is swollen thyroid. Drs don’t generally check or scan as often improves with replacement. Goiter likey with higher TSH. Hashimoto’s & Ords both treated by hormone replacement.
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Thank you, I weigh just over 100kg, I did ask fir increase but was told need to wait 3 months despite telling then my symptoms haven't changed. They said it can take a few months to work.
Question, should Levothyroxine help with the bradycardia? As my average heart rate is still around high 40s and Pulse Ox around 93%. Just worries there is something more going on and GP not taking it seriously 😑
Sleepman suggestion to write in with list of symptoms is good idea
Also be ready to quote NHS guidelines on dose increase and that TSH should be much lower …definitely within range, ideally below 2
You need next dose increase in Levo
Retest 6-8 weeks after next increase
Guidelines suggest at your current weight you will eventually be on around 150mcg Levo per day
It typically takes around a year or two to SLOWLY increase dose Levo upwards
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
It sounds like you are tolerating levo quite well? That is a Good and an important step.
How long have you been on 50 mg? 3 months at this stage to the next change with a TSH of more than 6 seems too long.
Go back to gp ? and ask for dose increase based on symptoms and get vit D, B12 folate and ferritin tested. Also possibly thyroid antibodies if not done yet.
Have they measured free T4 and free T3 levels?
Show them you are logging symptoms and are taking it seriously and build trusts.
1. If young (1983?) and no heart issues a 25 mg or more increase is not a worry from 50mg.
Next dose change after this might be smaller as you get to final dose and fine tune
2. It takes a while even at the right dose to get over fatigue and other issues from having "low battery" likely for a long time. It affects everything in your body to varying amounts. Take it easy if you can and get help from those around you.
3. Best outcome (which is most people) is you just need levo/T4 and then feel fine.
Some need T4 and T3 and some just T3.
If doctors will not measure freeT3 and free T4 (they rarely do) then private home tests are what many do. I would say Feb next year.
4. My brain was mush at your stage. I had to email myself what to do next and my symptoms. I tracked weight (which dropped fast and snoring my wife said)
Heart rates on waking. Blood pressures every week. I did temperature under tongue as I was cold. Ladies have 28 day cycle though.
5. What caused your underactive thyroid? Are you autoimmune type. NHS will test once, important to know. TPO antibodies
If autoimmune your thyroid could still be under attack and release T4 and T3 while being attacked. A reason to take it slow and delay checking your T4 and T3 levels.
If autoimmune then diet intolerances more likely like gluten.
6. This forum has really helped me learn and get well and stay well.
I am 2 years in. Was a lot better after 3 months but my dose went up quicker than yours.
It is very stressful not understanding why I now have underactive thyroid. I was tested 5 years ago and was fine. As there are other symptoms that could all be related I worry something else is going on. I will go private for further testing I think as dint seem to get answers from GP. I was refused to up my medication and been told to wait to Jan 😣
Aah sorry your doctors behaving strangely, 3 months wait seems like sadism. How long have you been on 50mg if more than 6to8weeks to your newTSH= 6.7 result -> then doctor seems wrong or deserves challenging.
Write a letter to Doctor surgery and take a copy?? I did this. I stated blood tests I wanted . Write down symptoms and as you say not improving ...
Ask for another consultation within 2 weeks about increasing dose. Ask to know why thyroid has failed.
I am not a pushy person, I was desperate to feel better.
Nice guidelines say test for TPO/autoimmunity to see if this is the reason.
Home blood tests are useful but not the easiest things. 2to3 days to receive then only post them in Mon or Tuesday.
Just looked Randox is £29, next day on Amazon.(does antibodies too . Free T3 and free T4 levels would give info to push doctor with if they are very low. )
If you are autoimmune type then gluten and lactose might be an issue.
I wonder if there are decent private pathways to help ?... I get the impression not from reading on here. A post asking for recommendations needs to say direct message only. I would do this even if you have TUK list of Endos.
It seems say 90% of people are fine on T4 only when on somewhere the right dose. This forum has a lot of the 10% who are not.
Hope you are in simpler treatment bunch and you convert T4 to T3 well and do not have thyroid resistance (T3 only types)
Your GP is being too cautious. Try and go back to see another GP. I would also buy a blood oxygen monitor, there are loads under £10. The low heart beat is a sign you need more levo, but this can affect the blood oxygen levels. If the levels drop to 92% or lower, get an urgent appointment,
By the way, the guidelines state that when being newly diagnosed, they should run the T3 test too. Check if this was done. You are entitled to your medical records by law, so just ask next time you are in the surgery. They like a few days to print them out, or if you are in England, you may be able to see them on the medical app.
It can be a bit of an uphill climb to find your right levels, but keep climbing - you will get there!
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