I had a total thyroidectomy 7 weeks ago - all my muscles and joints hurt and I am tired all of the time. Currently on 100 mgs of thyroxin

[Sun3]

The consultant started me on 125mgs then increase to 150 3 weeks post op. After further blood tests was called back by my GP to say I was overdosed. He reduced it to 100mgs.Can anyone help. I feel awful all of the time.

[Sun3]

I was always in the 'normal range' but had all the symptoms of an under active thyroid. I then developed a lump on the thyroid which after many scans etc was advised to have thyroid removed. There was cancer but it was all removed with the gland.

[maggykriti]

I had a TT 12 years ago and I take natural thyroid and T3. Thyroxine alone can't replace all the thyroid hormones and elements supplied by the natural thyroid gland so natural dessicated thyroid may be a better option for people living without a thyroid gland. Perhaps you need to talk to your GP with some information about living without a thyroid. Anthony Toft says that some people are better with their TSH at zero and since your thyroid was removed for cancer, that is where your TSH should be to prevent reoccurrence. If your TSH is that low you must be very tiny in build! I do wish you well, it is a hard road.

[ThyroidThora]

Hi Sun3,

I'm really sorry to hear that you had thyroid cancer. I too had the right lobe of my thyroid removed last for suspected cancer and it was cancerous. You really need to have your TSH seriously suppressed to prevent the cancer growing back. What was your blood results that prompted a reduction in your medication? Your TSH needs to be below 1.0, ideally between 0.2 and 0.5 but if they're confident that your cancer won't return they might want to keep your TSH at around about 1.0 or just below. My TSH was 1.0 last December when my endocrinologist told me to up my dose of Levothyroxine from 125mcg to 125 and 150 on alternate days. I've been on this dosage until last Thursday when he told me to start on T3 of 10mcg and 100mcg of Levothyroxine because my symptoms weren't improving. I've been on this regime for 5 days now and I don't feel any better, in fact I feel worse, but I probably need a higher dose of T3.

If you need someone to talk to about your cancer or any other worries please feel free to PM me and I'll do my best to help.

All the best.

[Hidden]

Hi there

I'm just going to cut and paste a long post I just sent to someone else who's also had a TT. 100mcg thyroxine is really a low dose for someone with a TT. Anyway, what I said previously applies here too I'll paste below:

Hi there, sorry you got your throat cut, I'm in the TT club too. I felt like hell on wheels on T4+T3 combined and now doing well finally on NDT - natural bioidentical hormones. I concur with all the posts on here, if you've had autoimmune disease then your brain and body is sensitised to high levels of thyroid hormone. Also natural hormones just work better in my opinion in TT patients. I'm a member of the yahoo! group Thyroidless - they have helped me so much, I suggest you join there.

Also if you've had autoimmune thyroid disease then you'll be gluten sensitive: stopthethyroidmadness.c... If you find you are craving carbs and yeasty or sugary things you also need to look into candida.

Here's a good doc that explains why your thyroid meds might not be working properly tpauk.com/forum/content.php...

Also as you are thyroidless you REALLY need to stay on top of your B12, Vit D, iron and electrolyte levels esp potassium and sodium. It's also worth investing in a saliva cortisol test from Genova which is discounted through this site. Starting NDT with low iron or low or dysfunctional cortisol will just make you worse (I know, I tried it!).

It's very important that you find an endo who is listening to your symptoms and dosing you according to your free T4 and T3 levels (with no meds 16 - 18 hrs prior to the blood draw) and not your TSH. As you've had Graves the TSH can remain suppressed for several years after surgery (it's a useless test anyway, as anyone who is being held hostage to it can tell you!) because of your antibodies. Thyroid removal does not cure Graves, you just have Graves and no thyroid

Gut issues are very prevalent with thyroid illness - a good probiotic like symprove is a good idea. I also had parasite infections, small intestinal bacterial overgrowth, leaky gut, candida - you name it. Food allergies for me were a cortisol issue - cortisol is your body's own anti-inflammatory so once I got my adrenal support sorted they all went away. Genova do a digestive analysis, admittedly its £400 but if your gut continues to be a problem after you've changed your diet (the Paleo diet would be ideal) and cut out gluten, and ideally most grains, then it's worth investing in.

Finally, if like me, you struggle to find a doctor who will listen, you can do it yourself. Blue Horizon medicals have a great blood service which does not require a doctor - they do a comprehensive blood test plus X which tests the lot, thyroid, iron, vit b12, vit D, glucose, cholestrol, electrolytes, etc. You'd need a free T3 test on top. All in about £300. You order and pay and then book your test at your local Spire or Nuffield hospital (and there's more choices for places in London on top).

Final piece of the puzzle might be your sex hormones. Mine went beserk after TT - as a woman my progesterone sank into my boots, my oestrogen went off the scale and my testosterone tanked. On NDT prog and oest are now normal, but still no testosterone so just starting very low dose bioidentical testosterone gel.

Final word to the wise, like reallyfedup has said, your thyroid is crucial to the correct working to all the other hormones in your body. My good (german) endo surgeon admitted that they barely understand what it does, let alone what it's removal really does, it probably has far more functions than they presently understand and it probably makes other yet to be identified hormones. What I do know is once it's gone, things don't always go to plan in your body and hormones can cascade the wrong way. So it's best to just only replace the hormones that are missing, take the bare minimum of supplements that your body needs to survive and don't take any herbs or anything else (e.g. DHEA or Pregnenolone) that relies on something converting to something else. Keep it really simple.

A good supplement regime would look like this:

- Bioidentical thyroid hormones to the ELIMINATION OF SYMPTOMS

- Vitamin B complex - good one like lamberts, thorne or solaray

- Mineral complex - delivering at least 99mg Potassium, zinc and copper, and at least 100mcg selenium

- unprocessed (I like Light Gray) celtic sea salt liberally on food or sipped in water, say half a teaspoon a day to start

- CoQ10 - 100mg is good, 200 is better

- Extra Vitamin B5

- Magnesium - chloride or citrate to bowel tolerance and epsom salt baths

- Vitamin C to bowel tolerance but at least 2g a day

- iron if you need it I like Bluebonnet chelated iron 27mg

- Vitamin D3

- Vitamin B12 - METHYL lozenges, I'd start on 5,000mcg a day

- A good fish oil - posh brand like Nordic Naturals or Green pasture

- Good fats in your diet - grass fed butter, coconut oil, extra virgin olive oil, good cholesterol is at the top of hormone cascade, you need good fat.

I hope that helps you, if you do nothing else, join the thyroidless group on Yahoo!

Best wishes

Rebecca

x

[Clutter]

Are you still seeing the specialist? Your GP has reduced dose to much in one increment. He should have reduced 150mcg to 125mcg, retested and reduced again by 25mcg to 100mcg if you were very very suppressed. Does GP know what he's doing? Can you post your results with lab ref ranges? You may be undermedicated and this maybe why you're experiencing pain.

My endos want my TSH suppressed <0.1 post ThyCa. Suppressed TSH helps prevent recurrence and it is desirable to suppress for up to 5 years and if no recurrence prognosis is the same as for the rest of the population.

[Sun3]

Thanks to all of you for your comments and help! You are all more knowledgeable than I am and I will look into all of your advice.