Daughters Final Diagnosis - Minimally Invasive ... - Thyroid UK

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Daughters Final Diagnosis - Minimally Invasive Follicular Carcinoma

Keenbean profile image
10 Replies

Dear All,

I have written before about my daughters hemithyroidectomy. The removed nodule had cancer in it which measured 1.3cm. We finally got the reports after chasing the hospital constantly. Hers is minimally invasive follicular carcinoma, but with a strong suspicion of lymphovascular invasion. So we have been offered a total thyroidectomy followed by Radioactive iodine treatment.

Just concerned about radioacitve iodine. Is there a need to freeze her eggs as a friend in USA had a similar thing and her doctors said that RAI will affect the quality and quantity of eggs.

Please give me your views on this.

Does anyone know about vitamin b 17 curing cancer. In my daughters case the MDT says they are doing it purely for her long term safety. The surgeon says there might not be distant metastasis as the cancer is only 1.3cm. But they want to do a TT and RAI as the report says strong suspicion of Lymphovascular invasion.

Please let me know your thoughts.

Her TSH is still 10 so she has been put on 150mcg of thyroxine. But she only leaves half an hour between her levo and breakfast. We have to sort out the timings of her levo. How many hours after dinner should she take it, if she decides to take it in the evening.

Since her surgery, on two occassions she has complained that she cant breathe. But had no other symptoms of a panic attack. On both occasions she was indoors and it was very warm. So not sure if this is the side effect of the surgery,. She had her first surgery on th 14th Feb.

Regards

Keenbean

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Keenbean
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10 Replies

Sorry to hear this. I'm not familiar with most of this but a few points : 1) someone wrote a post on here recently about after effects of Radioactive Iodine [Bustamove86 (if you can find it)] .

2) Is there any other test that can give more definite info re " strong suspicion of . . . . " (You've probably already asked).

3) I've read on here that when taking Levothyroxine at night it needs to be at least 2 hours after last food or drink - but with me it would have to be longer as I have slow motility.

Hope someone who can be of more help comes along soon.

humanbean profile image
humanbean in reply to Mary-intussuception

Post from Bustamove86 :

healthunlocked.com/thyroidu...

Aurealis profile image
Aurealis

Your daughter has quite a bit to cope with at the moment. I think if it helps to take thyroxine first thing and have breakfast half an hour later I’d leave it like that. True, she may not absorb quite as much from each tablet, so she might need to take a slightly higher dose, but consistency is the thing to establish stability and wellness and it’s a very cheap drug. It is only recently that the better absorption arising from taking Levo away from food has been known about and most people have got well without knowing about this. Living with a long term condition is partly about not letting it rule your life.

m7-cola profile image
m7-cola in reply to Aurealis

I so agree with you about ‘not letting it rule your life’.

humanbean profile image
humanbean

Diet can affect the growth of cancer cells, because they need lots of glucose to reproduce. Glucose in the diet is most easily derived from sugar and carbohydrates. You could do some research on "ketogenic diet and cancer" for more info. (Note that a ketogenic diet is not a cure for cancer. It makes it harder for cancer cells to proliferate.) There is loads of stuff about it on the web, if it interests you.

cancertherapyadvisor.com/ho...

Edit : I have no medical training.

Keenbean profile image
Keenbean

Thank you all for your replies. I have been looking at intermittent fasting and keto diet. I thought I will let her finish her GCSE. They finish on the 14th June and her TT is on the 20th June. Then depending on ow she copes there will be RAI. So willlet her settle down and then make the diet changes.

I agree that this should not rule our life. But inevitably I seem to be encompassed on the what if's and her future. Trying hard to focus on the +ves ie it got caught early. Shes young and will recover fast. I spoke to a friend who has had RAI for Hyperthyroid and has had no long lasting side effects. She had temporary hair loss and she has gone hypo.

So let's see. Praying constantly in my free time to the Almighty to give us strength to come out of this.

Big thanks to all of you who reached out and answered my questions.

Regards

Beagleblerta profile image
Beagleblerta

RE: <snip>Her TSH is still 10 so she has been put on 150mcg of thyroxine. But she only leaves half an hour between her levo and breakfast. We have to sort out the timings of her levo. How many hours after dinner should she take it, if she decides to take it in the evening.</snip> Dear Keenbean,

I have been on thyroxine for years. (morning - 2x hours after eating & 1x hour before eating). Also, my TSH levels were fluctuating with each bloodtest & it turned out that it was the fault of the "Generic" - (read "cheap"!) - thyroxine. My GP prescribed "GoldShield" thyroxine & the problem went away..hope this helps? May God bless your daughter & heal her - in Jesus' name - AMEN!

helvella profile image
helvellaAdministratorThyroid UK in reply to Beagleblerta

For as long as I have been aware of the costs of levothyroxine (to the NHS, within the UK), all of them have been very low cost.

To criticise one against another on grounds of cost ("cheap") seems misplaced.

(Quite often, it has been seen that the cost difference between dosages is far greater than the difference between makes.)

This is not to dismiss the idea that getting the make that works best for each of us, and sticking to it, is a good plan. It is without doubt sensible.

helvella profile image
helvellaAdministratorThyroid UK

Does anyone know about vitamin b 17 curing cancer.

I suggest you could start by reading the Wiki article. Of course, WIki is imperfect. It does, though, provide a starting point. And 37 references to follow up.

The possibility of B17 causing cyanide poisoning should be seen as a warning to be very cautious.

en.wikipedia.org/wiki/Amygd...

Keenbean profile image
Keenbean

Thanks everyone for your replies. We'll work on the timings and bit reluctant on b17 as no concrete information is available, but there is a danger of cyanide poisoning.

Anyone here has wheatgrass juice. I'm looking into adding that to my daughter's diet.

Also I will post separately if someone can pm me a name for a T3 supplier.

Thanks again

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