Synthroid anyone?: I have been scheduled for... - Thyroid UK

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Synthroid anyone?

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I have been scheduled for thyroidectomy. Should I insist my GP allows me to try Synthroid or similar first? I have been told there is a 50/50 chance of bleeding to death with this surgery. Not very good odds. Thanks for any information.

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greygoose profile image
greygoose

Hi Alien, welcome to the forum. Sorry you need to be here!

I think people will need a lot more information before they'd be able to help you on that one. Why are you having a thyroidectomy? Do you have any blood test results to share with us? What is your diagnosis? Are you taking any medication at the moment? All the details are important. :)

in reply to greygoose

Hi Greygoose, all my blood tests came back completely normal, except one showed autoimmune response. This is why for 8 years no doctor would believe I had a thyroid problem. They now agree I am hypothyroid . I have nodules which have grown so large they are threatening my airway, hence the need to operate. My speech therapist and my Consultant both said surgery could be fatal, but now the Consultant says there is no option but to do it. We are looking into the possibility of laser instead but that is only done privately here, 5 figure sum! I only take supplements, Zinc, selenium, Krill oil. For many years I was a Veterinary Assistant and was exposed to X-rays on a daily basis, I don´t know if this had anything to do with it. Frightened to get operated and the meds afterwards seem to cause more problems than they help. I feel like just putting up with it quite honestly. Grateful for any help or advice.

in reply to greygoose

Is there a way to send you a scan of the Lab report? Please see my reply below to Clutter about what happened yesterday. Been put on Levo now but not picked them up yet. Very nervous about taking it.

Clutter profile image
Clutter

Welcome to the forum, AlienFSX.

I've not heard that there is any chance of bleeding to death during thyroid surgery. There is something like a 2% chance that patients may experience parathyroid gland loss or damage, or damage to vocal chords during surgery.

No doctor is going to agree to prescribe Synthroid while you are euthyroid and it would make you very unwell if they did. I was prescribed thyroid replacement the morning after surgery.

in reply to Clutter

Thanks for your reply but I do live in Portugal!! Generally the healthcare is very good but it only takes a slip of the knife. Consultant warned me of the risk and also my speech therapist advised against surgery because of the risk of fatal blood loss. Up the creek without a paddle. See also my reply to Greygoose. Thanks.

Clutter profile image
Clutter in reply to

AlienFSX,

There are always risks with any surgery but botched thyroidectomy is very rare. I think your consultant and therapist may be alarming you unnecessarily. There can be risks of the nodule impacting nearby organs, including the vocal chords, if surgery isn't done.

I had hemilobectomy to remove a large nodule compressing my trachea and because post-op the nodule was found to be malignant I had completion thyroidectomy 3 months later.

in reply to Clutter

Thank you for your reassurance. At the moment we are exploring the laser option, but it is only done privately here. I had needle aspiration biopsy and mine, at the moment, are benign.

Clutter profile image
Clutter in reply to

AlienFSX,

Benign FNA biopsy is good. I don't think laser is an option in UK NHS and I've no idea if it is available privately in the UK

in reply to Clutter

Hi Clutter, I am in Portugal, and laser is available in the Private Hospitals. I haven´t lived in Uk for more than 30 years. Thanks.

Dear Clutter, through a medic friend, a few strings were pulled and I was able to see the thyroid surgeon in the Private Hospital near to me this afternoon. He conducts at least two thyroidectomies a week so very experienced. I took him all my exam and test results and he questioned me on my symptoms. He then told me that he felt surgery was not necessary in my case yet as my thyroid was not that much enlarged. He went ahead and gave me a script for levothyroxine to try for 2 months, 0.125mg size, one a day, which I will pick up tomorrow. He said this will shrink the nodules. I am very nervous about starting them after reading all the adverse reactions and bad experiences I have read on here. I also take other medications such as Concor to control heart arrythmia and palpitations, Lasix, children´s aspirin to thin my blood, ( I had little strokes) and also Ogasto for stomach acid/heartburn which I told him about but he made no comment. I guess I should be brave, suck it and see?

What do you feel is the best time of day to take the tablet as you are supposed to take it fasting I believe and the Concor I am supposed to take as soon as I wake up before getting out of bed. The Lasix I take 30 minutes later and rest I take at night. So grateful for any advice, I am really nervous about this. Thanks

greygoose profile image
greygoose in reply to

Hi Alien, only just seen your replies.

You know, it's always helpful if you can post your results, with the ranges, because doctors don't always have a good grasp on what is hypo and what is not.

I see your surgeon has given you 12.5 mcg is it - we always talk in mcg, not mg - well, if you are in anyway hypo, that is not going to help because it's too little. So, let's have a look at those labs!

You mention side-effects, etc, from levo. Do you realise, that millions of people take levo without any problems at all? Not every body has adverse reactions, in fact, most people don't. It's just us odd-balls on here that usually don't get on with levo. People who do, will not be on a forum like this, because they don't need to be. However, if it doesn't agree with you, there are alternatives. But it's just great that your surgeon is taking such a positive stance.

The only thing is, the Ogasto. Do you know what that is? It's what we call a PPI, and it reduces your stomach acid. It also reduces absorption of other medication and of nutrients. So, not only are you probably very low in most nutrients - which means that what little levo you manage to absorb will not work for you - it also means that you have nutritional deficiencies making you ill.

PPIs are supposed to be given short-term to people with high stomach acid. As you have Hashi's, your stomach acid is probably low, but the symptoms are the same. Before doing anything else, if I were you, I would verify that you actually need the Ogasto and if not, try to wean yourself off it. There are other things you could take to raise your stomach acid, if low acid turns out to actually be your problem. Getting off the PPI will make a great difference to your life.

Then, you should get your vit D, vit B12, folate and ferritin tested, to see where they are. You might need supplementation. There's no point, as I see it, in taking the levo until you've sorted all that out, because it won't do anything for you, and then you will be facing thyroidectomy again because doctors know nothing about all the stuff I've mentioned above.

I take Ogasto or the generic for crippling indigestion, I tried to come off it before but had to go back on it after a couple of days. I eat mainly vegetarian diet but once a week I have sardines as they are good for you. I have been trying to avoid gluten but I miss my pasta so much. I rely on cruciferous veg to make veggy dishes but I see they are a no no. I use rice noodles instead of spaghetti now. I can only take lacto free dairy, but I can eat Greek yoghurt ok. Getting difficult to find anything that I CAN eat without getting diarrhoea. Make a lot of stir fries, use only Olive Oil. Given up all soya products. I take heart medication plus Lasix. I take Vit D+Calcium as I also have osteoporosis. I take Vit B12, selenium every other day also zinc. My GP would not give me Levo but the Consultant that I saw as a favour has given me 60 days as a trial to see how I feel on them. I take Cider Apple vinegar with honey & lemon in warm water but not every day. Hoping it might sort out my stomach acid. Just confused and don´t know who to believe. Here are my latest bloods for what it is worth. Cholesterol through the roof! (Genetics)

IMUNOLOGIA E ENDOCRINOLOGIA

Validado por: Dra lryna Klyeshtorna

TSH 1.42 mU|/mL [O.27-4.20]

FT4 14.41 pmol/L [12.00 - 22.00]

FT3 5.25 [3.1O-6.80]

Auto Ac. |gG TG 14 Ul/ml 1‘ [0 -115]

Auto Ac. |gG TPO 11 Ul/ml [O - 34]

Cholesterol Total 311mg/dl [ <190]

Cholestero HDL 41mg/dl [ 40-60]

Trigliceridos 103 mg/dl [ <150 ]

Cholestero LDL 255.10 mg/dl [ <100]

Thanks

PS None of the medics have said I have Hashi´s only hypothyroid. It´s just I have all the symptoms of it. Vitamin D shouldn´t be a problem as I live in a sunny climate, but I am sometimes anaemic and take iron when needed.

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