Underactive thyroid

[Linann]

I've had an underactive thyroid for 20 years, lm on 100mg thyroxine but last years and this years test show lm abnormal readings of TSH level 0.35 - 5.5, should my dose be increased as my health this year feels dreadful hair falling out, extreme fatigue and other bloods this test have affected my liver and cholesterol readings to be also abnormal.My doctor is going to discuss with me about retesting in 3 months but surely l just need my medication increasing?

[Jaydee1507 Administrator]

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.

You've given us whats called the reference range, its different to your ctual result number which is probably before that on your results.

If GP has only tested TSH its far from the full picture. You need FT4 & FT3 tested as well as TSH to make a full assessment. The NHS doesnt understand this. You casn buy a private blood test to get these things tested.

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.

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.

[McPammy]

Hi. Do you have your results please. Then we can try and work out what’s going on. It could be poor conversion from t4 levothyroxine to the most important hormone t3. Or it could be that you’re on too much levothyroxine t4. Generally with Hashimoto’s if you have that cholesterol can get too high if your t 4 or t3 or both aren’t high enough in the ranges. Please gives you results and ranges.

[Heloise]

Linann, should we understand that your own test result was OVER 5.5? Do you know that for most people that test result should be around 1.0 or definitely not over 2.0? With those symptoms along with your result it is rather outrageous that you are being told to wait three more months. Please insist on a raise in dose beginning immediately. Is it possible to have a second opinion or another doctor view your results? Try whatever you can and follow the other suggestions in the other replies. We all care about the problem you face and even in the U.S. it is often a similar sorry state. Some are forced to treat themselves, which is an option, but you may not be ready to do that. Until then keep posting questions as to how to handle your situation. You have begun very well by recognizing you need better treatment. Now you need to recognize what you may need to make that happen. Your health can be improved but you have catching up to do.