No thyroid gland but still symptoms?

[Beth19748993]

Has anyone else experienced this? I was told by my dr that I have no thyroid gland left, I am on medication for this but I still have symptoms and up and down every other week. Shortness of breath, lethargic and fatigue, metallic taste, cold feed. My dr said this can’t be connected as I have no gland left so wasn’t sure if anyone else experiences this?

[greygoose]

Your doctor is an idiot!!! lol I've heard some things in my time, but that takes the biscuit. It's because you have no thyroid, and you are not adequately replaced, that you have all these symptoms. In other words, it's pretty certain that it's all HIS fault.

When did you last have a blood test? Do you have the results and ranges? If so, post them on here and let's have a look.

[Beth19748993 in reply to greygoose]

I’m glad I’m not going mad! Thank you! My last blood test was 20/3/21 and serum TSH 3.9 T4 12.8 (both classes as normal range) thyroid peroxidase 86 (abnormal)

[humanbean in reply to Beth19748993]

20/3/21

TSH 3.9 (in range)

T4 12.8 (in range)

thyroid peroxidase 86 (abnormal)

That last one is probably thyroid peroxidase antibodies (TPO Ab) and the reference range for that is usually something like (< 35).

You need to ask the receptionists at your surgery for a copy of your results, and they should include the reference ranges. Get a printout, not a scribbled list. Ranges vary from lab to lab so, for example, the bottom of the range for T4 could be anything from 7 to 12 or even higher. Your result could be mid-range or hovering around bottom of the range.

Having a thyroid removed is not like getting an appendix removed. It doesn't mean that all will be well afterwards and you can forget about it. Every cell in the human body needs thyroid hormones in the correct amounts in order to function properly. So the number of ways that inadequate treatment or incorrect treatment could cause you harm and make you feel really unwell is enormous.

The best indicator of how well your body is doing in thyroid terms is to measure your Free T3. TSH doesn't tell you anything very much. But you haven't had Free T3 measured.

Low or below range Free T3 will make people feel hypothyroid. Above range Free T3 will make you feel hyperthyroid.

As for TSH yours is far too high for someone with thyroid disease or with no thyroid and indicates that you are very under-medicated. Most people with thyroid disease or no thyroid need a TSH that is 1 or below. A very few feel okay with a TSH which is 1 - 2. But 3.9??? This would make almost everyone feel unwell.

Please read this link :

healthunlocked.com/thyroidu...

[greygoose in reply to Beth19748993]

Yes, they're in-range, but the ranges are rediculously wide. With a TSH of over 3, you are still hypo. Hypothyroidism starts at 3. And, although you haven't given a range for the FT4, it looks very low. So, your FT3 - the most important number - is probably lower still. And, it's low T3 that causes symptoms.

You really do need to see another doctor with a brain. This one isn't going to make you well because he doesn't have a clue how it all works.

Those high antibodies mean that you have Hashi's - aka Autoimmune Thyroiditis. Did you know that? That will be what is killing your thyroid. But, there must be some thyroid tissue left capable of working or the antibodies would be low.

[Beth19748993 in reply to greygoose]

The dr said I have an organ specific auto immune disease but never told me it was hashimoto. Thank you for your help, I’m going to call the drs tomorrow and insist on answers.

[greygoose in reply to Beth19748993]

Good for you! Don't let him get away with it!

Oh, and as far as I know, all autoimmune disease are organ-specific. Yours just happened to be Hashi's which attacks the thyroid.

[greygoose in reply to Beth19748993]

No, you're definitely not going mad!!!

[shaws Administrator]

Ignore this person who is 'supposed to be a doctor' but is another who has no knowledge about dysfunctional thyriod glands. He should - at the very least - offer you a levothyroxine/liothyronine combination i.e. T4/T3. There used to be a replacement called NDT until it was cruelly withdrawn, denying patients an alternative.

I am not medically qualified but learned the 'hard way' that it is this forum that enables us to find our way to good health.

Not his fault I assume but in their training something is badly missed and it is the diagnosing/treatment of hypothyroidism or hyperthyroidism. No wonder people get so very unwell and we shouldn't have to suffer even more after being diagnosed.

Follow this method and ask for a Full Thyroid Function Test (probably wont but there's no harm in asking). Request TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. If he or lab wont do all of them, you can get a home test and follow the same advice given below.

Make the earliest possible appointment. It is a fasting test so do not eat before your blood draw but afterwards. You can drink water but allow a gap of 24 hours between your last dose of thyroid hormones and the test and take it afterwards. This will give you the best results.

If you've not had B12, Vit D, iron, ferritin and folate tested, ask for these too. Everything has to be optimal.

Always get a print-out of your results and ensure the ranges are stated and post for comments.

You have to ensure your stomach is empty when you take thyroid hormones and wait an hour before eating so the majority take it afterwards. You can drink water. Food can interfere with the uptake.

As you have no thyroid gland at all, the very least he should offer (but maybe doesn't know) is a T4/T3 combination. For some unknown reason to me, the 'authorities' decided to remove NDT (natural dessicated thyroid hormones) from being prescribed. They used misinformation in order to do so, and gave no warning to patients. Truly awful that they do not care about relieving clinical symptoms.

NDT was first introduced in 1892 and before that hypo people died. It saved thousands of lives since then.

[SlowDragon Administrator]

What’s the range on Ft4 result?

Fr4 looks extremely low.

Ranges vary from Lab to lab ....by most common range is 12-22......obviously 12.8 would be far too low

How much levothyroxine are you currently taking

Do you always get same brand?

What vitamin supplements are you currently taking

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one.

Most important results are ALWAYS Ft3 followed by Ft4.

When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

About 90% of primary hypothyroidism is caused by autoimmune thyroid disease

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[shaws Administrator]

Another fool. I do not know how these people actually get a Licence to prove they are qualified.

[waveylines in reply to shaws]

Scary how many ignorant idiots are in the medical profession who have zero knoweldge on the treat,emt of hypothyroidism. The situation just see,s to keep getting worse.......the harm they must be causing must be immense

[pennyannie]

Hello Beth and welcome to the forum :

The thyroid is the body's engine, and the conductor of all your bodily parts, your mental, physical, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

A fully functioning thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 said to be at around 10 mcg plus a measure of T4 said to be at around 100 mcg.

So what medication are you taking to compensate for all of the above ?

There are 3 thyroid hormone replacement options :

Though in the UK for some reason beyond my compehension we only get offered T4 which needs to be converted by your body into T3 which is the fuel the body runs on.

If you wish to try and replace your T3 " loss " you will need to be referred to an endocrinologist ; T3 is around 4 times more powerful than T4 and read the average person neds to be able to utilise around 50 T3 daily just to fuction.

If you wish to try Natural Desiccated Thyroid which contains all the same known thyroid hormones as that of the human gland it is meant to be available through your doctor on what's called a " named patient only " prescription, but in my experience, it's easier to buy this for yourself.

Can you see a different doctor as I can't see you now having any faith in this individual ?

There is nothing that could have been done to " save " the thyroid, or stop the progression of the AI disease, with most people simply getting increases in medication to compensate for the erratic output and long term failure of the disabled gland.

[LMorgan1]

I had my thyroid removed 6 weeks ago due to cancer and I have a TSH of 0.6 on 100mcg but my T3 is still too low, but it’s too early to judge. But I haven’t experienced your symptoms because I think my levels are right. Everyone above is correct...you need a higher or different dosage to what you are on and they should be testing regularly until it is. Hope you get some answers!