Thyroid UK
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Unordinary hypothyroidism

Hi, I am new here. I am always looking for information on hypothyroidism. In 1996 I had an unusual event happen, I was diagnosed hyperthyroidism and Dr sent me to another Dr for 2nd opinion, then they sent me to have a radio active iodine treatment to lower my thyroid but it killed my thyroid off. Three months later I was almost in a coma in the emergency room. Every since then I have every 3 to 6 months had blood work & constantly changing my Levothyroxine. It seems I have forever aged. Aches, pain, temperature changing from cold to hot in minutes, and very dry skin & hair. Is it supposed to always be this way?

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I'd like to think not. Do you have any details of your blood tests results to share say - at least the last one but preferably the last 2 or 3 sets of results. Give numbers and ranges in brackets with dates of tests. Also your Levothyroxine dose change - what you were on then change after result. With this information people will be able to make informed comment.

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Mary, I haven't got my results lately but I will this next time & I will ask about my records of past ones. But yes my Dr in 1996 sent me to a Neurologist that did a radio active iodine treatment on me, 3 months later I lost my job because I was almost in a coma & I had no thyroid is what the ER Dr told me. Any thank you for asking for my test results, I should start keeping updated on them again.

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Sounds like you are possibly under medicated, or have low vitamin levels and/or have high antibodies

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Post results and ranges here if you have these already

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

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Slow Dragon,thank you for the info. I have never been told to fast before testing & the times always vary. Although my Dr has prescribed vitamin D & B12. But I haven't fasted before testing.

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What dose of Vitamin D are you on? Do you remember what your result was? Were you prescribed high doses to begin with. Have you had Vitamin D and B12 tested since / recently?

Did you also have Folate and Ferritin tested?

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ps

You are in USA aren't you?

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Yes

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I would see the doctor if you are still so unwell. Query why they keep changing your dose and what your last result was - ask for the numbers and ranges. Ask the doctor to write them down or give you a a print out. Ask about having the other nutrients tested. And ask for your Vitamin D result.

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I am sorry you lost your thyroid gland but the fact that the only prescribe levothyroxine makes me feel that you really haven't been well since. The fact is that people who've had their thyroid gland removed should be prescribed T3/T4 and research has shown that many benefit (if if they have their gland) with a combination of T4/T3.

You will never recover if they keep adjusting your dose. Always get your blood tests at the very earliest possible time, fasting (you can drink water) and allow a gap of 24hours between last dose of levo and the test and take afterwards. blood

Ask GP for a Full Thyroid Function test and tell him you deserve it as you've never been well since 1996.

You need: TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

B12, Vit D, iron, ferritin and folate. (GP should definitely test all vitamins/minerals).

Any thyroid hormones he will not check, you can get privately and they are pin-prick home tests.

All blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take afterwards. This helps keep TSH at its highest.

Allways get a print-out of the results with ranges to post for comments.

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Shaw, thank you for the info. I am learning a lot already. I am going to start asking for test results again. I did do that in the beginning but I never really understood them & stopped. I hope once I get my results back this time & I am going to try to get some past ones printed too, I hope that will help me here too. Oh I forgot, where do I get private tests at?

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This is the link and we have two: Blue Horizon and Medichecks who do a selection of tests. Medichecks has a special offer of some kind on Thursdays you could look out for.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

They are pin-prick home tests but they can also arrange to have blood drawn.

It is a big learning curve, but when we can recover with relief of clinical symptoms it is well worth it. It might not be quick but as long as it a steady improvement it will be worthwhile.

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I have just realised you are in the USA so those labs will not be suitable. You must have private labs in the USA who will do:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

The test has to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours from your last dose of levo (or other thyroid hormones if you take any). Post your results with the ranges and you will get comments. Ranges are important.

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The advice you get from Shaws is spot on - and especially the part about NDT or the T3 -T4 combination replacement hormone .

One word as regards doctors here in the US - every general practitioner MD, etc. Any that I have ever been to in the past 30 years has refused to do anything but TSH and T4 blood tests. However I’ve had great success with functional doctors readily doing all the test that Shaw‘s mentioned - without my having to ask for them. Also freely give me the results - recommend T3 T4 replacement and get me to a level that is very close to perfect health .

Your hair will come back you won’t be so susceptible to cold - certainly won’t be near a coma ! It is so regrettable that that happened to you and so so very unnecessary . Functional doctors many times are practicing doctors of osteopathy or DO’s. I know a really good one in Oklahoma if you would like to message me privately . If you live in another state I don’t know any others but asking around is usually the best way to find one .

The information you get here as you’ve already discovered is wonderful and will get you feeling better in no time . You simply must find a doctor that will prescribe NDT with the T3 T4 combination . Also try going gluten-free do a six week experiment to see if you don’t feel better . Selenium (200 mcg) supplements will help with the T4 T3 conversion. Vitamin D3 in a dosage of 2000 mg - 5000 mg a day is what I take.

Please keep in touch and let us know how you are doing. This autoimmune thing with our thyroids is growing into an epidemic and the doctors are looking the other way . I really don’t think they know what to do or they don’t want to know. Right now all we have is each other and sharing what works. Information sharing is keeping a lot of us out of the hospitals !

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