Following my successful appointment with a private Endo last week, I just wanted to update everyone on my progress. I received a three page report from my Endo full of recommendations to my GP and went off on Monday morning to consult the Senior Partner in the Practice.
The Endo stated I had multiple thyroid issues following TT last Feb & that I had hypothyroidism and Hypoparathyroidism which needs careful treatment.
My TSH goes up and down and last T4 was 26, well over recommended levels. TSH was 4.6, still too high. It said it is obvious I am not converting t4 to t3 because of my multiple symptoms and has added a small amount of T3 (10 mcg) to my meds to be introduced over a 5 week period, reducing Levo from 150mcg to 100mcg. Ism also to have calcium & vitD levels closely monitored as well as other tests over a 6 week period and have ben given Calcitriol 25mcg x 2 daily. He is monitoring weekly blood tests.
My GP Senior Partner was very resistant to T3, and after a lot if discussion and pushing by my husband agreed that he would prescribe T3 but only after we had paid for first prescription. after that it could be on NHS. So 28 tablets which will last 56 days cost £150. So £12.50 for 8 weeks supply. He tried to put me off taking T3 as he said most Endo's are against it.
I also have to have DIXA test as my vitamin D is low, last July just 32 which is why Calcitriol has bern prescribed. Due to fluctuating calcium levels which were low 1.7 making me hypocalcaemic and then too high, 3.1, the levels will be tested weekly.
As I also have a mild aortic heart murmur, I am having an echocardiogram to check that my aortic valve has no sign of calcification.
I am also to go gluten free due to digestive issues, I'm on 20mg of Omeprazole daily.
Questions:
1. Has anyone else got experience of taking Calcitriol? Is 2 a day too much?
2. I cut my Levo fom 150 to 125 last Friday for last 5 days (felt better no internal shakes)
And today cut Levo to 100 and took first 10mcg of T3. Should I take 125 of Levo on days when not taking T3?
3. Are there any side effects from taking T3,? feel anxious & trembly this morning.
4. Will the T3 affect my heart in long term?
5. How long before benefits of T3 begin to show.
My brand of Levo has been changed to Activis from Mercury.
I would be glad of any thoughts on the above points, with all my symptoms, I never know if I am over or under medicated.
Many thanks
Written by
Flowerpower_nafas
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For me, T3 is magic. It made such an unbelievable difference. It is, of course, not the same for everyone. Rumours abound in the medical profession that it is 'difficult',peaks, etc etc. I will give you a link and you will see that it is not 'dangerous' and no. It is after all the main Active Thyroid Hormone we all need in our receptor cells. It is horrendously expensive in the UK for some unknown reason. Maybe it is a 'good earner' for the suppliers. It used to be £28 a little while ago, I believe, but due to it being produced as a generic now (usually cheaper) they can charge what they like it appears and there is no competition.
I had constant palpitations on T4 which calmed when added T3. You state you have digestion problems and are using Omeprazole. I know lots of people are prescribed this for stomach problems but usually, if hypothyroid, we have low acid and not high.
The physician should call a pharmacy and request the leaflet given to patients when they pick up a Cytomel (T3) prescription. The physician would learn, as the patient leaflet on Cytomel explains, "POSSIBLE SIDE EFFECTS: NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with proper use of this medication." Other than Nystatin, he probably will find that no other drug he might prescribe is as free from adverse effects as T3.
PS. My own view is that the Endocrinologists have been brainwashed (in USA in particular they were/are given monetary incentives by Big Pharma to prescribe their products and levo must be a big money-spinner for them) and guidelines given that only levo must be prescribed, despite many patients not getting well. Bear in mind too, that levo does suit lots of people or it may be they just don't know there is alternatives - not much use if they wont be prescribed.
I have just noticed your levothyroxine has been changed to Mercury. Bear in mind that symptoms you may get could be from the change if Activis suited you.
Dont' take supplements or medication within 4 hours of thyroid medication.
Thank you for reassuring reply that helps me a great deal. Calms the mind!
And it was other way round with Levo, changed to Activis from Mercury as Mercury appears to make me shaky. I was on Activis after being discharged from hospital, then put on Mercury and that was when tremors started. Pleased to be back on Activis. X
We don't realise when first medicated that levothyroxine is not 'one size fits all'. It is trial and error and if one's levo isn't working when you are on a good dose, to ask pharmacist if he has a different make (there are no Brand levothyroxines at present as Eltroxin was withdrawn, only generic).
I think that's at the centre of everything Shaws, I just thought Levo would be fine for me, and it isn't . That's difficult to accept when you have to take a daily pill that your life depends upon. Getting one's head around it takes time. Without this site I don't know where I would be! xx
When you get your levo from pharmacist take note of make and take that for around 12 weeks and if not improving ask if you can try another and so on. Sometimes the addition of a little T3 can make all the difference and we have to be on an optimum medication and not dictated to by the TSH point. Dr Toft says we can have a low or suppressed TSH if we feel well. GPs don't appear to know this and think we are going to have a heart attack so some adjust up/down according to the TSH - all wrong.
I didn't know that! Thank you. I was put up to 150 Levo because of TSH level and was fine for a few days then all the nasty stuff came back. I was shaking so much one morning my husband took me to A & E. the tested calcium which was ok, then said it might be my heart, so suggested 24 hour heart monitor. Did not test thyroid levels of any type at atypes agree, most do tors know nothing! Frightening!
I take Adcal which is a calcium and vit D supplement as I had trouble with my calcium levels following TT often low but tended to fluctuate. Just remember to take calcium well away from thyroid meds. I found the vit D in that was not enough and have to take extra vit D as well to keep my levels stable.
I have just started to add T3 as well. I have been on Armour for 2 years (long story) but with only partial recovery and still many symptoms though very much better than T4 only when I could not get out of bed or even hold a toothbrush! Although there is some T3 in Armour the Dr I saw felt I still have a problem with T4. I do not understand why you have to pay for the first prescription as it is available on the NHS and more especially as it was recommended by an endo. I would phone the trust and see if that is correct though I know from experience sometimes it's just easier to pay to get what you need. Will be interested to hear how you get on, good luck.
Congratulations on your perseverance, flowerpower.
The consultant's decision to boost your T3, as you are not converting properly, is very sound.
I am also in agreement with Shaws' re Omeprazole and supplementing with B12.
I would like to add that Omeprazole, due to its power to reduce stomach acidity, will encourage the growth & populate the harmful bacteria in your guts (known as SIBO or Small Intestinal Bacterial Overgrowth) which will also hinder the conversion from T4 to T3.
You are on the right track by eliminating wheat. To get more benefits, you could eliminate all grains, sugar, and dairy as well.
Thank you for the info & replies to my queries. It helps enormously to have this support and to hear other stories. It's so sad that we all have to suffer so much with these on going issues. X
I am supplementing B12 and have doubled the dose in last 5 days on recommendation of Consultant Endo. And guess what? My numb toes that have been with me since the op are beginning to recover. This is a real bonus and unexpected!
That all sounds good, apart from having to pay for the first prescription. Cheek
I also prefer Actavis to MP and noticed a reduction in palpitations although they remained bad until I added T3.
I don't understand about introducing T3 over a 5 week period. Won't you be taking 10mcg daily? T3 has a very short half life of 6/9 hours so I don't understand how it will be beneficial without taking it every day and with the reduction in Levothyroxine you may feel very hypothyroid if you don't take it daily.
If you're feeling anxious and trembly cut the 10mcg into 5mcg doses and take the first 5mcg with your Levothyroxine and the second dose 4/8 hours later. It can take a few days to get used to it but the feelings should pass and it's not unusual to have slightly elevated pulse 90/120 minutes after taking T3.
Long term use of low dose T3 shouldn't impact on your heart and may even improve it if the muscle is a bit sluggish.
You may feel T3 within a couple of hours of taking a dose (slightly raised pulse and slight palpitation possibly) but they should subside after an hour or so. If they don't skip your next dose of T3. It takes 48/72 hours to be absorbed at a cellular level when you may start to notice improvement.
Brain fog and mental clarity were the first improvements I noticed within a few days but it was the calming effect of T3 on the T4 I noticed most with tremors and internal shakes improving and stopping. FT3 doesn't respond to dose changes as quickly as TSH and FT4 and it took around 3 months before I felt well although there was considerable improvement along the way.
Omeprazole is very harsh and may deplete your stomach acid making it hard to absorb nutrients, including B12. Hypo patients often have low stomach acid. Betaine Pepsin &/or raw apple cider taken in fruit juice or honey sweetened water before meals raise stomach acid and aid digestion.
Thanks Clutter. I was told to take it every other day for say Monday/Wed/Fri then for four days then five until every day whilst reducing Levo from 150 to 100. I've just checked his notes & that is what he said. I did notice increased heart rate this morning, did panic me a bit but now I've read your comments I feel better about it. I think he is introducing it slowly because of my soft/mild aortic murmur although GP says nothing to worry about.
So I won't take another T3 until Friday, then Sunday, and increase by one day a week. I will take with 100 Levo but will take 125 Levo on the inbetween days.
I need to be on Omeprazole for reflux and non ulcer dyspepsia which I've had for a long time. I need an endoscopy before I can reduce it. The ENT Surgeon who removed thyroid wouldn't allow an endoscopy before or after op because of possibly causing problems with vocal possibly since I've had such problems following my TT, I haven't been able to face having endoscopy but they want me to stay on Omeprazole because when I'm anxious my stomach plays up. I need to be calm as I hate having them! As my liver function tests are normal they will wait to do endoscopy, when I feel ready to face it! I'm on 20mg daily and trying to reduce to 15 then 10.
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