Hypothyroidism

[Tadger]

Hi I'm wondering if anybody is having this problem I got my thyroid removed 25years ago I've never been the same I'm on 175mcg thyroxine for the passed 15years but feel my muscles in legs and arms feel tired now and again get tension headaches feel sick and dont want to eat doctor said theres nothing I can do your in the zone they put me on antidepressants but now I've came off them I went and got another doctor he took my blood and said my ths was high could it fluctuate in winter time and how long does it take to get back to normal

[SlowDragon Administrator]

First thing is, do you have any actual blood test results?

if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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, if you are not on correct dose of levothyroxine or have poor conversion of Ft4 to Ft3 (very common if on just levothyroxine after total thyroidectomy)

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, 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 vitamins

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

For thyroid including antibodies and vitamins

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

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

20% Patients with no thyroid can not regain full health on just Levothyroxine

ncbi.nlm.nih.gov/pmc/articl...

Suggest you get FULL testing using correct time of day and last dose 24 hours before test ....plus EXTREMELY IMPORTANT all four vitamins tested

Come back with new post once you get results and ranges

[Tadger in reply to SlowDragon]

Thanks very much I will ask them to print me out a copy I've got to go back and get another blood test any this is a horrible feeling

[Hidden in reply to Tadger]

Vitamin D could be an issue ..

[BB001]

Without a thyroid your body has lost the thyroid's ability to make T3 and the thyroid's ability to convert T4 to T3, so your body is now required to get the T3 it needs by conversion elsewhere in your body from the T4 (levothyroxine) that you are taking.

If you're like me and have genetic mutations which mean you don't convert T4 to T3 very well, you will struggle on T4 medication (and from the sound of things you do). I needed NDT which contains all 5 of the hormones your thyroid used to produce (T1, T2, T3, T4 and Calcitonin). I feel so much better, but from my symptoms and blood tests, I'm now looking to top up my Thyro-Gold NDT with T3.

I'm on NDT and my results show my T4 is 77% of its range, but T3 is only 45% of its range. Goodness knows what I'd be like just on Levothyroxine (T4).

I suggest you read Paul Robinson's book called the thyroid patients manual. Also have a look at his blog which can be found here recoveringwitht3.com

[pennyannie]

Hello Tadger

Just to say, a fully functioning working thyroid would be supporting you daily with approximately 100T4 + 10 T3.

Since you have ' lost ' your thyroid you have lost your own natural production of both T3 and T4 and are reliant now on taking thyroid hormone replacement and are prescribed Levothyroxine which is T4 and the only thyroid hormone replacement readily available on the NHS.

Some people can ' get by ' on T4 alone, some people at some point in time, simply stop converting the T4 into T3 and some people simply need both these vital hormones dosed and monitored independently to bring both T3 and T4 into balance and to a level of well being acceptable to the patient.

T4 is a pro hormone and your body needs to convert the T4 into T3 which is the active hormone that the body runs on, and I read the average person needs about 50T3 a day in order to function. I read T3 is about 4 times more powerful than T4 so you will see that having ' lost ' this initial natural production you have been down regulated by about 20% of your overall well being.

Initially your body could have probably made up for this shortfall, but over time this may have taken it's toll and may now be pulling you down and making you feel less well.

Your ability to convert the T4 into T3 can be compromised if your vitamins and minerals are not optimal in the ranges, so it is important to get checked out ferritin, folate, B12 and vitamin D.

You also need to know how well you are converting the T4 into T3 so both these also need to be tested and measured against each other.

The thyroid is a major gland responsible for full body synchronisation, and the conductor of your physical, mental, psychological, emotional and spiritual well being including your inner central hating system and your metabolism, and when not optimally medicated the symptoms expressed can be wide spread and some, seemingly unrelated.

As already been advised, you need a full thyroid blood test panel, but your doctor may not oblige. If that is the case there are private companies as detailed on the Thyroid uk website who will action the relevant blood tests for you. Once with these results, start a new post, including the results and the ranges and people better able than myself will talk you though your way back to better health.

I'm with Graves and had my thyroid ablated back in 2005 and now self medicate with NDT.

[Hidden]

Without a thyroid gland many, perhaps all, people will never get well again on levothyroxine alone. The results of blood tests may show you to be euthyroid/normal but that is simply not correct.

It may be possible to feel well by taking a combiation of levothyroxine and liothyronine (T4/T3) but it is more likely that you should take NDT/porcine.

NDT contains as near a selection of hormones as is possible from a porcine source and will never be replaced by any alternative unless it is by way of donation from a human source.

I suffered similar to you before I abandoned the NHS and bought some NDT, my health improved dramatically almost overnight.

[Rosebud1955]

Hi,

I feel for you, I had my thyroidectomy 3 years ago, I have never been well since surgery, I really regret having the surgery, I wish had had discovered this forum prior to surgery. I was completely ignorant regarding thyroid issues, the surgeon did not give me any info as to what life would be post surgery. He put me on 125 mcg of Levothyroxine and left me to fend for myself. When I asked him about NDT, he was condescending and told me I would get mad cow disease if I took it, WHAT IGNORANCE. I allowed someone so ignorant to remove my thyroid and left me to suffer.

If you don’t mind me asking your approximate age, I’m turning 65 in a couple of months. The Endo is already threatening a reduce in dose when I turn 65.

I presently take 100 T4 + 10 T3, tension headaches, muscle and joint pain, massive weight gain, lost all my hair, turned grey since surgery, depression, no desire to live. My life is now a nightmare. I’ve lost all my friends because I lost the desire to socialize, family don’t understand. I’m a big mess. The ignorant refuses to give me an increase because he’s obscessed with my suppressed tsh. I live in Canada where we’re not allowed to purchase on line, it would be a nightmare to clear customs, plus we need prescription 8n order to purchase. Endo told me to loose weight, suggest I join weight watchers program. I eat very healthy and average portions with fruits and vegetables. What a mess!!!!!!!

I share your pain with this thyroid journey. I feel it’s abuse.

Thanks for reading, I just needed to vent.

[Tadger in reply to Rosebud1955]

Thanks rosebud I'm sorry your going through hell but I dont know what to do I just get tension headaches and cant concentrate I just started a new job today in a hospital and I'm struggling by the way I'm 54