Glimmer of hope!

[Darty3]

I had a thyroidectomy 15 yrs ago for cancer and was on 100mcg levo. Which was fine until 4 years ago I started with hypothyroid symptoms.

One of the last symptoms I gained was a loss of smell. The endo. I saw in May thought I had Parkinsons. Neurologist appointment end of October! I wasn't prepared to live in purgatory for another 5 months, so have just started with T3 (10 days) and yesterday smelt a disgusting smell that I haven't smelt for over a year.... With a jolt I realised its significance and rushed out to smell the roses!

Dare I hope that my problems are T3 based and not Parkinsons?

[greygoose]

I really think you dare!

[MaisieGray]

But what are your thyroid hormone levels - have you been optimally medicated on Levo during the past few years, 100 mcg isn't an excessive amount.

[pennyannie]

Hello Darty

Well, very soon the coffee might be wafting through from the kitchen as well ?

A fully functioning working thyroid would be supporting you daily with approximately 100T4 + 10 T3. Personally I simply think that if here has been a medical intervention and the thyroid surgically removed or ablated with RAI, both these vital hormones should be the patients prescription for if, and maybe when, they are needed.

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

Conversion of T4 into T3 by the body can be compromised if vitamins and minerals, as detailed on this amazing site, are not optimal, but ultimately living without a thyroid andnot being prescribed both thyroid hormone replacements, if needed, is a down regulation of your QoL by around 20%.

The thyroid is a major gland responsible for your mental, physical, psychological, spiritual and emotional well being, it's the conductor of your body's orchestra, and your central heating / cooling system.

You might like the following book written by a doctor, who has himself hypothyroidism.

It's all things thyroid and explains in an easy, sometimes funny, insightful way, the interaction of all the body parts and knock on issues that can happen when the thyroid isn't functioning properly. This is particularly relevant to us as we need to compensate for the loss of this small but very important gland.

Your Thyroid and How To Keep It Healthy by Dr Barry Durrant - Peatfield.

I think it would be prudent, if you haven't already, to get a full thyroid panel including your ferritin, folate, B12 and vitamin D checked out, so you know where you are, as you start your journey back to better health.

[Caroline888]

Hi Darty3

I was referred to the Parkinson's clinic about eight years ago with the same symptom. Loss of sense of smell mostly, but other times with a strange chemical or burning smell in my nostrils. I also had a tremor which is another symptom possibly indicating Parkinsons.

I had an MRI and all was normal. I was diagnosed with parosmia and phantosmia (smell disorders) and benign essential tremor. The smell disorders have improved significantly since I've been on levothyroxine.

Even before my MRI, the consultant was very reassuring. I was given to believe that even with two symptoms of Parkinsons, it was unlikely that the MRI would have an unfavourable outcome. I guess they are just playing safe. I was about 60 at the time.

I hope you don't have to endure too many episodes of smelling foul odours and that your appointment goes well.

All the best,

Caroline

[SlowDragon Administrator]

Great to hear T3 is helping in so many varied ways

You will need to retest bloods 6-8 weeks after any dose change

Recommend also retesting vitamin D, folate, B12 and ferritin too

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

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

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

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

Indepth research into T3/NDT - very positive

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

[Darty3]

Thank You to all of you for your support and encouragement.

In answer to your questions I have done all as instructed on here. So started with full blood test, which resulted in taking spray vitamin D which cured the aching fatigue,

Then took magnesium which cured the constipation and muscle pains.

Now the slow plod of gradually increaseing T3 and then at 6 weeks another full blood test for your excellent advice.

Thanks again for giving hope!

Darty 3