After a sudden thyrotoxic crisis grade 2 last May, I had to proceed with radioactive therapy last November. In December I started l-thyroxin of 50 and until March everything seemed to go very well. Suddenly i started to have unexplained dizziness, increased pulses and an overall anxiety. I was at 0.55 TSH and the doctors insisted that I have to stay at 50 or increase which seemed wrong to me. Until today, I am still trying with my endo to find the right dose from 50 to none, and then to 63 and back to 50 as within 4 weeks my TSH dropped from 14 to 0.44. Since Monday when I reduced my dose, I suffer from dizziness and a drunk feeling/cloud on my head while my muscles feel like they can support my body.
Have any experienced something similar? Am I the only one who feels alone on this and that the doctors wont listen how we feel?
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Gigi1806
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If your doctor is only tested in TSH then you will never find out whats going on with your thyroid levels.
To see the full picture we need to see a full thyroid panel - TSH, FT4 & FT3. Suggest you get some private blood results run and start a new post when you have the results.
Are you a small person, because 50mcgs is really only a starter dose and may only be suitable for petite people.
Other things to check are key vitamin levels - ferritin, folate, B12 & D3. Low levels of these can cause all sorts of issues with Levo tolerance and multiple symptoms.
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.
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.
Do you do tests as per the protocol recommended here?
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.
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.
The usually test indeed only the TSH which most of the times I need to pay privately. This weeks panel stands on
TSH 0.44 ( av. 0.34 to 5.5)
FT3 2.59 (av. 1.60 to3.90)
FT4 1.33 (av. 0.70 to 1.48)
Interesting to hear that best is to fast before the blood exam, I usually take my pill early in the morning.
I had a big blood exam in June and everything you mentioned was in order apart from vitamin D which was -25. I am indeed small person, 1.62cm and 54kg but still 50levo feels a lot sometimes.
Exactly what were your vitamin levels with ranges?
If you took your Levo the morning before the test then your FT4 is showing a false high.
Free T3 (fT3) 2.59 pmol/L (1.6 - 3.9) 43.0%
Your FT3 needs to be a little higher so this test shows you eed a dose increase.
Essential to have all key vitamins at OPTIMAL levels, not just in range.
Whats Happened about deficient vit D?
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150.grassrootshealth.net/projec...
However my Endo adviced to decrease the dose as given the last 4 results (on bi-weekly) indicates that I am very sensitive to levo. With 63 I had hypo symptoms. In just 2 weeks of 63 I dropped from 14 to 1.62 and staying another 2 weeks on 63 resulted to further drop to 0.44 and being under jittery, insomnia, dizziness and sudden drops of blood sugar.
Dose should NEVER be adjusted based just on TSH, especially after Graves’ disease
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
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 autoimmune thyroid disease
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
VERY important to test TSH, Ft4 and Ft3 together
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 usually take Selen, B12 and magnesium before sleep. Its the first time I ever heard that I should be on empty prior to blood test, which makes totally sense. Interesting that none of the doctors took a minute to mention that. The most recent one:
TSH 0.44 ( av. 0.34 to 5.5)
FT3 2.59 (av. 1.60 to3.90)
FT4 1.33 (av. 0.70 to 1.48)
Is tho the dizziness a common symptom? I never have experienced dizziness prior to March after my RAI.
So were you initially diagnosed with Graves Disease and first treated with an Anti Thyroid drug - such as Carbimazole or Propylthiouracil - PTU ?
I too have had RAI thyroid ablation but way back in 2005:
As I understand things the dose of RAI is not as exacting as one might think BUT it will slowly burn your thyroid out in situ - so there is a period of time where you may have some thyroid function, then a little, and then possible spurts of a dying thyroid then presumably no thyroid hormone production of your own.
I was immediately placed on 100 mcg T4 after ingesting RAI :
It is essential that you are dosed on your Free T3 and Free T4 readings and not a TSH -
your HPT axis - the Hypothalamus - Pituitary - Thyroid - feedback loop - on which the TSH relies on working well now does not work - as your feedback loop, and own power supply of thyroid hormones is gone and this circuit loop now broken as your thyroid has been disabled.
For any thyroid hormone replacement to work well - we do need optimal levels of the core strength vitamins and minerals - ferritin, folate, B12 and vitamin D -
RAI is also known to trash vitamins and minerals so suggest you also ask that these blood tests are also run and we can advise where in the ranges your levels need to be maintained.
If your doctor can't run these tests for you - like many forum members here - you may need to get these done yourself privately and we can talk you through what it all means and your next best steps back to better health -
I see below SDragon has already detailed where and how you can run your own tests so there's no need for me to repeat any of this -
Thyroid UK - is the charity who supports this patient to patient open forum and where you can find all things thyroid - thyroiduk.org
The most rounded of all the research I undertook in my research into Graves Disease - is that of Elaine Moore - elaine-moore.com
I started with Hashimoto, after few weeks of thyroxin I was diagnosed with Graves and started with Propicyl and Carbimazol after my crisis in May 23. Since July I am taking Euthyrox and since Monday a dose of 50
It's very early days so don't expect too much too soon as your body needs to readjust to this invasive treatment :
Please get your vitamins and minerals run as if these are not optimal they will compound your ill health further - and at least we can supplement these and get back on the right track before things get worse.
I think most people find themselves ' fully hypothyroid ' within a couple of months - as I said earlier I was immediately placed on what's considered a full dose of T4 - 100 mcg -
I guess it depends on the dose of RAI ingested and the size of the thyroid gland.
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