Doses for Thyroidectomy People

[NadeNud]

Hi

I just wondered what kind of doses people with a TT are taking?

I know there are many factors that affect dosages but I would be very interested to know how it ranges.

Thanks

[Hennerton]

I have taken all sorts of doses, including NDT, over the past few years, searching for the one that will make me well. Last year I saw an Endo privately and he was surprised that I expected to feel like I did before TT. His view was that I would never feel perfectly well. So now I am taking T4 100 and T3 15 to 20 mcg. It depends how I feel. I have been on a much higher dose but still did not help aches amd stamina. I know lots of people on here say they feel great but it hasn't happened to me yet!

[NadeNud in reply to Hennerton]

Thanks for getting back to me and sorry that it you don't feel as good as before. I thought it was as simple as taking a pill at the time...how naïve I was!

[Tatty10 in reply to NadeNud]

Hi i also was very naive after. My tt was started on 100 micro of levo then built up to 125 micro then 150 alternate days had a very bad experience with palpitations Endo reduced it down to 100 will not let me increase even though i feel really. Poorly. i felt quite well on the alternate 125/150 i really thought that this magic pill would work.

[NadeNud in reply to Tatty10]

Did you have palpitations on the 125 level? If not, at least you could feel a bit better on that...

[Tatty10]

hi i will self medicate with 125 micro i am just awaiting my blood results and seeing my endo next week, its so awful that they keep us undermedicated when all we want is to feel well. I had no palpitations on 125 so whats the problem,

[NadeNud in reply to Tatty10]

Yes, I agree. If you don't already, you could self-monitor your pulse and blood pressure every day so that you could see how your heart is responding. And, of course, you will know how you feel, especially when palpitations occur..

Good luck with your next meeting.

[NadeNud in reply to Tatty10]

Hi

I also wondered if you felt palpitations when you took the 150 dose?

If so, maybe you could have tried a dose of 137.5 by splitting a 25 tablet? That would make it more even every day....especially if the general dosage made you feel so much better. The split 25 tablet may not have all the thyroxin evenly distributed but the same tablet over 2 days would amount to the same dosage and it would still be less than a hit of 150.

However, I would agree that palpitations are very frightening. Good luck with your appointment next week.

[Tatty10]

thanks i really felt so much better on the higher dose but the palpitations really scared me, have you had a tt and if so what medication are you taking.

[NadeNud in reply to Tatty10]

Hi

Yes, I had a TT in 2011 and experienced hypo symptoms in June 2013 and then very badly this March when a very stupid doctor declared my dose should be cut from 100 to 50. Since then I gained a stone in weight, due to the hypo and now I need a lot more Levo.

I also tried some a mixed T3 and T4 this September which I felt really uncomfortable on. After posting on this forum, it seems it wasn't really properly thought out as it was probably way too much T3.

Feels like a roller coaster! Feel happy when the dose seems ok but hate the muscle ache etc. had a doctor trying to convince me I was depressed after her colleague ran me down and the bloods proved overt hypothyroidism...

So glad I found this forum!

[Pepekins in reply to NadeNud]

I had a TT over thirteen years ago, started on 150 mcg Levothyroxine which over the years has been whittled down. I now take a mixture of 100 and 125. Have always had lots of energy (except when one GP who did not know anything about people minus a thyroid gland) cut the dose down to 100 on which I got fatter and more tired. I have taken various supplements over the years but still don't really know what is essential. I do have to be careful with my bones as I lost a great deal of bone in my hips at one point (was on 150mcg) at the time) and went on to have a hip replacement, and I also get carpal tunnel probs (yoga helps). Have had the palpatations from time to time and the tremors (quite violent) high cholestrol and other symptoms, i.e.vertigo last year for a few weeks. Had ulcerative colitis for 4 years, completely better now (through diet and herbs). However the doc who said you cannot expect to feel 100% is wrong. I do, yes I have had hiccups, but I feel great. I would rather be on a natural thyroid medication but dare not rock the boat. However I would love to know which vits or supplements would be benefical for a lady over 50 who seriously swims, attends yoga twice a week and takes other exercise whenever possible. I get so confused as to what is/not necessary. Good luck to everyone and particularly those who like me have had their thyroid removed due to a malignancy and want to have optimum health. This site is brilliant!!

[ThyroidHell]

Hi , I started with 100mcg like everyone else, over the year I have tried all sort of combinations and at the moment ( been on 75mcg ) for 6 months. I honestly can't tell any difference wether I am on 75 or 125 really. I don't feel particularily unwell either. My GP is not very keen on me going on over100mcg anyways unless the blood tests indicate otherwise ( always telling me of the dangers of a stroke etc. ) Saying that I have a lots of thyroxin in my cupboard as i was prescribed different amounts at 1st so if I wanted I could experiment with higher doze..or in case a 3rd world war I could function little bit longer lololol ( joke )

[Pepekins in reply to ThyroidHell]

Yes, but thyroxine has not got an indefinite shelf life!

[Clutter]

Nade, I was prescribed 60mcg T3 after TT and then switched to 200mcg T4 after RAI. Felt terrible on T4 all the way down to 75mcg. Currently on 75mcg T4 + 30mcg T3 after FT3 was over range on 40mcg T3.

[leroi01]

Post TT I was prescribed 100mcg Levo but have now switched to Novothyral (100mcg T4 and 20mcg T3) in the morning and an additional 25mcg T3 in the evening, so total 45mcg T3 per day. Generally quiet improvements rather than giant leaps forward: have warmed up alot and my eyesight is much better. My FT3 is now in the top quartile instead of bottom third. May try NDT next to see what happens

[Flatfred]

I had aTT when 18. That was 43 years ago. I wa on 125mg Eltoxin until it went out of production. I then had Mercury Pharma and that nearly killed me. Over 40 yrs of a thyroid problem and I've never felt so ill before.

Through this forum discovered NDT and am now on 2.5 grains and have never felt so well. I'm having to pay for it which is a shame but the improvement in my health makes it worth while.

[NadeNud in reply to Flatfred]

Hi

Thanks for the reply. Could you tell me how the Mercury nearly killed you?

[Flatfred in reply to NadeNud]

Hi. The MP Levo was awful. Within 10 days I was getting terrible palpitations, constantly to the point whereby my GP wanted me to go to A&E on 3 occasions. I didn't go because I knew I'd be admitted. Constant feelings of nausea and actual vomiting. Breathlessness and fatigue. I went from walking my dog 4-5 miles per day, in the hills and after 3 weeks on MP Levo I couldn't make it up the stairs to turn the heating on or off. Lost 11lbs weight in 10 days and my stomach has never been the same since. Constant shakes, very anxious, disturbed sleep. And the list goes on. I truly believe there is some thing very wrong with their Levo and many people on here have reported the same symptoms as me.

I thought I had a severe virus for the first 3 weeks and ended up collapsing in a field when walking the dog and it was at that point I questioned the Levo and contacted MP directly and there reaction confirmed in my mind there was something wrong with it.

I don't care who I upset, I've said it before and I'll say it again, dodgey Asian company making toxic medication. The same company more than tripled the price of their T3 overnight once they became the only supplyer in the UK.

The good news for me was discovering NDT and since I've settled on that its the best I've felt in many many years.

Good luck on your journey to better health.

[Pepekins in reply to Flatfred]

I would love to be on a natural thyroid replacement but seem to do well on the Levo and my endo would strike me off if I took anything other than Levo.

[Pepekins]

Happily I found that it is not the case! I have never taken Natural Hormone replacement (I would love to) but I am very well on Levothyroxine only and (apart from a few ups and downs) have been well for more than thirteen years.