Last year, my TSH levels went berserk . I was successively under treated then I had an overload of replacement medication-Levothyroxine. From October to June, my blood tests were abnormal despite 4 changes of Levothyroxine doses .
Once this was sorted, I had a severe reaction after a swim in cool water this summer. I had a syncope with a severe blood pressure drop and vomiting/severe drowsiness. I was diagnosed with cold urticaria with anaphylactic symptoms (reaction to temperature change, water, cool air,contact with cold objects…)
Both are probably not related. Anyone having the same conditions?
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Lily1970
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GP's can often make heavy handed dose adjustments that can make us unwell.
Are you sure your thyroid is optimally treated now? The NHS often rely on only TSH results, occassionally FT4 as well but to know if you are converting well we also need to see FT3 which most members here have to pay for private blood tests to see.
For thyroid hormone to work well we need OPTIMAL levels of key vitamins - ferritin, folate, B12 & D3.
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. 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/help-and-supp...
There is also a new company offering walk in (includes free blood draw) & 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 know if you had positive thyroid antibodies? 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.
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.
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 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Lily1970, Your 'severe reaction after a swim in cool water' could very definitely be related to your thyroid condition.
No matter what the medics may think, being on replacement thyroid hormone is not the same as having a fully working thyroid. Most especially if your thyroid hormone levels are not optimal.
You imply that your TSH is now stable. But that's not sufficient in itself.
You need to have good, stable levels of the actual thyroid hormones (i.e. FT4 and FT3).
Your GP tests will usually only be for TSH, which doesn't give a complete picture. But if you tell us what your most recent GP thyroid test result was, we can at least start from there.
Well you're definitely not optimally replaced thyroid wise and your D3, B12 & folate are too low. There is no FT3 result so we cant see if you are converting T4 to T3.
I'd recommend getting a private blood test to see where your FT3 falls but in the mean time you really need a Levo dose increase.
Your TSH is above 1. Some people need their TSH to fall below 1 to feel well along with OPTIMAL vitamin levels.
Free T4 (fT4) 11.7 pmol/L (9 - 19.1) 26.7%
On Levo only when optimally replaced I would expect to see your FT4 at 80-90% of the range and yours is trailing down at 26/7%. Far too low.
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. wildatlantichealth.com/vita...
Are you vegan or vegetarian? If not -
B12 - do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...
If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.
If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.
This B complex has all the right vitamins at a not unreasonable cost for 90 days supply(also contains folate). Once B12 is good you can stop the stand alone B12 and just continue with the B complex.
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