No thyroid

[Fynness]

I have had no thyroid for almost 5 years I’ve happily plodded along with very few issues and had no problem losing weight. 6 weeks ago I had a thyroid function test and my TSH was 4.8. For the last 5 years it has been 0.5 or sometimes even 1.00 I was shocked at this and I started to put weight on as I’ve been eating a lot more. The GP has increased my Levi thyroxine from 100mcg to 125 mcg. My hair if falling out my skin is dry my nails a splitting and I feel really fategued. I’m not sure what’s going on and my GP is like a broken record re measuring TSH. Should he not measure T3 and T4 should I buy T3 it’s diffic to know what to do?

[mumbleslowly]

they don't like to because the medicine cost is more it is a shameful practise

[radd]

Fynness,

Welcome to our forum.

You sound symptomatic but if you have achieved wellbeing for the last five years on Levo, then it could be iron or nutrient deficiencies.

Thyroid hormone replacement relies on optimum levels to work well, and nutrient deficiencies are common in people with thyroid issues.

Ask your doctor to test Vit B12, Vit D, folate and ferritin. Post results complete with ranges (numbers in brackets) for members to comment.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common and often need supplementing to bring to optimal

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Come back with new post once you have results

[Fynness in reply to SlowDragon]

Thank you they did not and said they could not test for T3 or T4 as they are not allowed. They tested me after work about 6.30pm

[SilverAvocado in reply to Fynness]

Without the full set of blood tests you won't really be able to assess thet thyroid situation. I think you should order your own mail order, finger prick tests. Many of us do these on a regular basis (I also had a thyroidectomy about 5 years ago), and its easy to do at home.

The ThyroidUK website examine how to order from Medichecks or Bluehorizon. You need the package that includes TSH, freeT4 and freeT3. Make sure you don't pay extra for antibodies as hopefully they will be irrelevant for you.

Doctors often know so little about thyroid A lot won't test freeT3, but it's shocking that they won't even do freeT4 at your place

[SilverAvocado in reply to SilverAvocado]

You can get the vitamins done, too, if your doctor won't do it. I think both of these services do a pack that includes all the thyroid panel and vitamins together.

[Fynness in reply to SlowDragon]

I do take CoQ 10 multi from cytoplan a very good company I also take omega 3 and collagen (marine)

[Ruby1]

Have you had another blood test since the increase? They have to increase it in small steps and it may be that you still need more, but they have to do it in stages and test after each increase until your levels are back down.

I think everyone will put on weight if they eat more. It's worth trying to stick to your usual amounts and not eat more. Presumably your appetite has increased?

There will be lots of knowledgeable people on here who can help you self medicate, but I think it is worth trying to get it sorted on the NHS first and taking aboard the advice re diet and vitamins.

[Fynness in reply to Ruby1]

Thank you they have said they will test in 6 weeks however it’s almost 8 weeks ago I’ll give the surgery a ring it sounds sensible what you are suggesting

[Ruby1 in reply to Fynness]

Yes give them a call and tell them you are still feeling unwell.

Best of luck!

[Jackie101]

Sometimes, synthetic thyroid doesn't work for people. That's because it only contains one thyroid hormone: T4. Your body is supposed to produce the active thyroid hormone T3, but it doesn't always work..I went to see Dr Peatfields who wrote 'Your thyroid and how to keep it healthy' He put me on a form of natural thyroid called Metavive. He also asked me to test my body temp and pulse rate every morning for several weeks. Low body temp and pulse rate is indicative of low metabolisim which is controlled by your thyroid.. It used to take me an hour to get up in the morning but not any more!

[Poniesrfun]

If you’ve been doing well on levo alone for some time then “something” has changed - likely nutritional as Slow Dragon and radd pointed out.

If you had your thyroid removed because of thyroid cancer then it’s imperative that the doctor checks Thyroglobulin (Tg) in addition to the full array of thyroid hormone levels. If you have Thyroglobulin antibodies then the Tg should be done by mass spectrometry. Elevated Tg often goes hand in hand with high TSH in thyroid cancer recurrence which is possible even after RAI.

If Tg is undetectable then the TSH increase is probably from something else such as poor conversion but you can’t know that unless you check free T3 and reverse T3, then you need the other tests mentioned to figure out why you aren’t converting well.

Patti in AZ

[Fynness]

Thank you it’s so confusing I had Graves and Hasimotos not cancer my thyroid was completely removed due to having the thyroid eye disease

[SlowDragon Administrator in reply to Fynness]

So low vitamins are very likely

Often things change over time

Ask your GP to run vitamin testing

Thousands on here forced to test privately to get full Thyroid testing

Always test as early as possible in morning and fasting and last Levothyroxine dose about 24 hours prior to test

[Fynness]

I just telephone surgery I can only get a 7pm appointment

[silverfox7 in reply to Fynness]

Ask if you can have a form to go to the hospital instead then you can choose when you go and what time as it should be a walk in and take a ticket so you know your place in the queue.

[jgelliss]

Strength and Sympathy for you Fynness . Having symptoms and not having a Dr/Endo knowing how to dose us can be very frustrating not withstanding debilitating for us . Would you have your latest FT4 FT3 TSH values ? Your Dr needs to test your FT4 FT3 with your TSH values . You might want to switch to another Dr that runs all the thyroid markers and understands how to dose you right . Journal your symptoms they are your Cellular results and are Very Telling .

Your nutrients are very important too . Vitamin "D" /K2 , B-Complex , B-12/folate , Magnesium , vitamin "C" , Iron if you test low , Celtic Sea Salt for electrolytes/ Adrenals .

Best Wishes .

[pennyannie]

Hello Fynness

just as a point of reference a fully functioning working thyroid would be supporting you with approximately 100 T4 plus 10 T3 daily.

It just seems sensible to me that if one has had a medical intervention and the thyroid ablated or surgically removed both these vital hormones should be on the prescription.

Some people can get by on T4 only, some people for some reason, simply stop converting T4 to T3 and some people simple need both these essential hormones dosed and monitored independently to bring them into balance and into the upper quadrants of their relevant ranges and to a level of wellness acceptable to the patient.

Since you have Graves Disease it is essential that you are monitored on T3 and T4 blood tests, as we have TSI / TRab antibodies that sit on and can control our TSH reading.

You might like the following-

Graves Disease a Practical Guide by Elaine Moore - this lady has the disease and had her thyroid ablated: she also now runs a very comprehensive website of all Graves patients,

it is USA medical protocol, but it is the most well researched specialist website.

Tired Thyroid by Barbara S Lougheed - from hyper to hypo to healing - this lady again, has the disease and had thyroid ablation, her book amongst other things debunks the over reliance of the TSH blood tests for Graves patients.

Your Thyroid and How to keep it Healthy by Dr Barry Durrant Peatfield - this doctor has hypothyroidism and his book is a common sense, easy read about all things thyroid.

We may now not have this major gland but we do need to know what it did and how we need to compensate for the loss.