After the op

[Finonia]

My first post here, I had a total thyroidectomy in 1984 (aged 32) due to capilliary carcenoma. I've been checked regularly, but my dose of levothyroxine has gone up and down. I am also hypoparathyroid so have to take calcium and vit D for life. My query is: do other people still suffer symptoms of an under active thyroid even when on reasonably high doses of levothyroxine? My GP tell me as my levels are fine, (infact sometimes on the high side in order to surpress TSH) I should be symptom free, but I still get tired, dry hair, dry skin, feel the cold, depression, etc etc. Any suggestions from anyone??

[silverfox7]

Can you post your results and ranges then I'm sure you will get some helpful replies. Don't forget the ranges as they differ from Lab to Lab and without them we would just be guessing.

[shaws Administrator]

I hate it when doctors continually mess about with doses to keep the TSH in 'place'.

Having had thyroid cancer you have to have a very low or suppressed TSH but if you still feel unwell I think it is time for a review.

I have my thyroid gland. I couldn't recover on levothyroxine. I improved somewhat when T3 was added but eventually had to go onto T3 only and am now well. I assume I might have had a resistant problem in that T4 couldn't be converted to T3.

My personal opinion is that people who've had their gland removed should be given T4/T3 combination at the very least from day 1. Levothyroxine is inactive and has to convert to T3. T3 is needed in our billions of receptor cells from head to toe.

Few doctors ever check the Free T4 and Free T3 and I'll give you a link and you can see the reason why FT4 and FT3 are needed.

We have private labs that will do these for you if GP wont. They are home pin-prick tests.

Blood tests have to be always at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your dose of levo and the test and take afterwards.

Ask GP to test TSH, T4, T3, Free T4, Free T3. B12, Vit D, iron, ferritin and folate. ~Tell him you've taken advice from the NHS Choices for info and advice, Thyrioduk.org.uk. The ones he wont do you can have privately.

Natural Dessicated Thyroid Hormones used to be prescribed and they contain all of the hormones a healthy gland would have produced but the BTA withdrew this through False Statements.

Recently they have decided to withdraw T3 also, despite the fact that hundreds of mainly women need it to function along with levo. It is a cruel decision but the cost rose from about £20 or £30 a pack to £300. The fact is that there are other T3s (unlicenced) which could be prescribed to replace withdrawn prescriptions.

It is supposed to be that if a patient has a clinical need it should be, and I think you have a clinical need for T3. (I am not medically qualified.

thyroiduk.org.uk/tuk/about_...

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

[Hidden]

A common query when you have had a total thyroidectomy. The only surprising thing is that you have suffered for an exceptionally long time before doing something about it other than complaining to your doctors.

I only managed 8 years before I gave up on ever getting well again on levo alone after my op and RAI treatment in 2005 for a benign multinodular goitre which was doing its very best to kill me.

When I discovered that the doctors were under some sort of obligation not to tell you "the truth, the whole truth and nothing but the truth" despite the fact that the GMC tells them they should, I gave up and started straight away on NDT/brand Thyroid-S and immediately felt much better.

Trouble is that NDT has become much more difficult to source from the internet since I started on it. Why this is so is obviously nothing to do with the fact that Big Pharma would lose a lot of money if more people used NDT and it is certainly not them who are chasing Paypal, Amazon and Ebay to prohibit the sale of prescription-style drugs through their web site in alignment with these sites' already existing rules - NO!, of course it isn't.

These are my personal views but you may be wise to follow the advice of others who know more than I about blood results and the like than simply for you to jump in the deep end and follow me.

[Hidden]

I had my thyroid removed in Oct 2015 due to cancer and a deviated trachea, before that I was feeling fine and not on any medication. I was put on Levo and start to feel ill straight away I carried on for 6/7 months and then joined this site. I put myself on NDT Thyroid s and now feel much better. I purchased my last lot in June this year. It is easy to obtain if you PM me I will give you the details.