I am really needing some help/advice from others in the community. I've not been feeling great for a while and I know it's my body telling me, but I don't know what to do. I'm F26, with what feels a range of health problems!
I've been diagnosed with Hashimoto's Disease after having the right side of my thyroid removed in 2019, I take 100mg of T4 Levothyroxine for this daily. I've been diagnosed with PCOS in 2021, and have been taking the combined contraceptive pill to manage symptoms. I also suffer from GERD and acid reflux daily.
Since all these diagnoses the only treatment I have is Levothyroxine which has hasn't helped at all. I still am experiencing major hair loss, all negative thyroid symptoms (I have a long list) and irregular periods. I don't know what my body is doing, I feel all over the place. I was thinking of coming off the pill so I can see how my thyroid is doing, and see if I can manage the symptoms that arrise. However I'm scared this could cause chaos with my hormones.
I ended up speaking to an endocrinologist on the NHS who told me very bluntly unless I go private there's no help available beyond being on Levothyroxine for the rest of my life, which quite frankly isn't working. It's affecting me both physically and mentally.
Advice from anyone else who has been in this sort of place would be hugely appreciated.
Written by
KiwiBird218
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
Often hypo people are left on not enough Levo or they don;t convert T4 (Levo) to T3 well. This combined with low vitamin levels which are common in hypo people due to low stomach acid and not being able to absorb viamins well from food.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
reception.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
We need OPTIMAL vitamin levels for our thyroid hormone to work well.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Hi, my doctor hasn't tested anything but my TSH since 2022. My latest TSH level is 3.01 mu/L, I've got a private blood test kit that I'll do tomorrow morning and hopefully I'll get some more up-to-date results on the rest.
I always get the same brand at levo, but was told to take it first thing in the morning. However I may try taking them at night going forwards, I think that would work better for absorption with my lifestyle. I do try and eat largely gluten free at the moment, but haven't noticed a different.
Will reply back when I have results, thank you for the guidance!
Its very common that the NHS only tests TSH which of course is completely inadequate. Thousands of members in this group have to buy their own tests to show the results they need to feel well.
Most people feel well when their TSH is at or just under 1, so yours at over 3 is far too high and no wonder you have remaining symptoms.
Make sure that theres 24hrs from your last dose of Levo & the blood test.
Do the test at 9am for highest TSH, fast that morning before the test just drinking water.
Be sure to follow the finger rick test preparation to get your blood flowing well:
When collecting your sample try the following tips:
Drink plenty of water. Being well hydrated will make it easier to collect your sample.
Shower before you take your test or run your hands under warm water for a few minutes, as heat improves blood flow.
Do some light exercise (move around, go for a walk, etc.) to get the blood flowing.
Make sure your arm is below your heart level – let gravity do some of the work.
Nails that are too long can make it difficult to collect a sample.
Do not shake the sample vigorously but invert the tube gently 10 times. (gently swirl the tube after each drop of blood).
Do not squeeze (milk) the finger.
Re-warm your hands during collection where needed.
Gluten free diet needs to be strictly gluten free to work.
And TSH over 1, but especially over 2 strongly suggests you need next 25mcg dose increase in levothyroxine
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
You know you have Hashimoto’s
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with Hashimoto’s…..autoimmune thyroid disease
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.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests 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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
I totally agree with the upping of levo dosage. I was told by the time the left half of my thyroid dies I should be on 150mg, and since I've been on 100mg since 2022 something needs to change.
The doctor said they'd check up on me once a year but unless I say something is wrong they won't bring me in for blood tests, so think I'll be doing what many others are now turning to and going private.
Yes, I will now commit to going gluten free completely (although I will miss the bread!)
Hopefully will have some results soon, appreciate all the advice for now! I'll be back
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).
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