Hi everyone, sorry I haven't been on for a while, Long story! But I will try my best to cut it short. I have had a few problems since March 2017. Blood tests were done, Doctor said it is ME' Chronic Fatigue, Due to go to the clinic Feb 2018. I have private healthcare so suggested to my NHS Doctor to refer me to an endocrinologist.
I just felt it was more to do with my Thyroxine levels and not 'ME' She referred me. I had a CT with contrast done, he needed to rule out any underlined problems 'ie' Cancer. It came back normal ' thank god!
Blood was done, he mentioned that maybe my thyroxine could be reduced, I have been on 150 mcg for 23 years ( near enough ) he wanted it reduced by 25 mcg, he said or maybe you should try a natural medication, Erfa, as he seems to think I have been on Thyroxine for a long time. Erfa £60.00 a month. I said I would try it because I just wanted to feel well again, have some energy and to feel normal.
Started Erfa 3 weeks ago, I was on 3 grains a day and now increased to 4 a day, the reason being my whole body aches, legs are like lead and I cannot sleep more than 3 hours, fuzzy mind and generally feel like I have no Thyroxine levels in my body ( i have no Thyroid ) .
Can anyone please take a look at my blood results and tell me what you think, they look a bit strange to me :/ Thank you ....
Date :
07 Mar 2017 - TSH Levels 0.81.
Normal range = mIU/L [0.3 - 3.94]
07 Jul 2017 - TSH Levels 0.86
27 Sep 2017 - TSH Levels 0.42
03 Nov 2017 - TSH Levels 0.23 - T4 -26.5 (normal range T4 pmol/L [12.3 - 20.2] T3- 5.6
. (normal range T3 0.9 - 2.5 nmol/L
)
2 weeks being on Erfa then demanded my Doctor do a blood test as I feel so crap!
06 Dec 2017 -TSH 0.02 T4 - 22.7
( Erfa )
Written by
Tanny123
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Your FT3 at 5.6 in Nov. is DOUBLE what is should be. Is that correct that 2.5 is the high end of the range and you are at 5.6? Or is one a nmol/L and one a pmol/L. Very confusing. Your FT4 was well over the high range as well. No wonder you feel awful. Why are you taking 3 grains. If you were on 150 while on Levo, the equivalent in Erfa would be around one and a half to two grains at the most. What kind of doctor are you seeing?
Hi Heloise, yes the T3 should be within the range of 0.9 - 2.5 nmol/ L, mine was 5.6. that test was taken by a private doctor, an endocrinologist. Specialises in hormones. The NHS Doctor's just do a routine Thyroid test, no T3 or T4 Test. Well, that was until I asked for it on the 6th December. Maybe before this date, my T3 & T4 were abnormal, Have been feeling unwell since March
I am taking the recommended dose set by the endocrinologist, he said to take 3 grains a day, I did query this. I emailed him this week,
this is what I wrote:
You told me that I should up the dose by taking an extra grain each day.
However, I am concerned that the reason that I may be feeling this way is
that I am already exceeding the amount of T4/T3 that I should.
Each 1.0gr contains 35mcg of T4 and 8mcg of T3 and is equivalent to 67mcg
of synthetic levothyroxine”
I am, therefore concerned that I am already taking an equivalent level of 201mcg of synthetic levothyroxine''
He replied 'Hi. The increased or extra dose is only until the ERFA kicks in, and
in future depending on blood results almost certainly like you mentioned, the dose will be needed to be reduced back '
It is definitely puzzling. If you wanted to pursue the FT3 issue you could find out the lab that came up with the results and just ask them about the range used for FT3. This is rather crucial I would say.
As far as Erfa "kicking in", since you have been on a T4 (levo) hormone you are only adding T3 which "kicks in" almost immediately and has a much shorter half life of a day or less. I think you would be better to learn about your condition yourself as most of us have discovered there are lots of empty heads out there in the conventional medical world.
The tests mentioned by Hidden are NOT included in a FULL Blood Count. You need to request them and they are so important. They need to be optimal for thyroid hormones to work in the body.
I do not have experience of NDT but after years of reading here I feel that your starting dose was too much too soon.
Your earlier reading show no FT3 reading which may have helped as they would show whether you were converting well the F4 to T3. What helps this conversion is optimum vitamins so get your Vit D, B12, folate and ferritin tested. We all tend to be low in one or more of them plus getting them optimal, not just in range will help not only your Thyroid to work better but will improve your general help and possibly improve some symptoms you may have.
There are two ways of changing from Levo to NDT, stop current meds and then introduce I grain of NDT split in the day. Hold for a couple of weeks then introce more and so on. Once at 2 grains increase by quarters so you don't miss the point you need to be at. Or you can gradually reduce Levo and add in NDT. The STOP The Thyroid Madness book explains it (STTM book). Don't forget in having taken Levo you will still have some in your body.
Now the reason we always start NDT at a very low dose and titrate up is because we still have some T4 in the system but mostly because T3 can have a huge impact! So it's introduced slowly so our bodies can get used to itcatca low dose and then can tolerate increases better. So your body is probably reeling from too much far too soon!
So get your vitamins tested and optimised asap as if you are low it takes months rather than weeks to get them right. T3 doesn't tend to work well if other things aren't in place first and in the mean time read all you can about NDT.
Another thing you should be aware of is that results are read differently when taking any form of NDT. TSH will be rock bottom, FT4 can be reduced which is why your results will not show if you are converting well as the FT4 result is no longer to be relied on so the most important reading and the only accurate one is your FT3 reading which should be towards the top of its range. So read all you can about doing things safely and I know we want to feel well but we can't speed things up. Have a look on this forum of problems others have found and how they corrected it so by using the search fascility you can learn a lot but it's not a quick fix, takes time and patience and learning but listen to your body, it will try and guide you as to what is good and what may be isn't.
Thank you silverfox7, I am researching. will call my Doc today, not sure the NHS Docs actually care because I went private, He also doesn't seem to care. complete madness!
I don't think it's so much that they don't care but they can be out of their depth which must make them embarrassed at times. Years ago I suggested on here that now several doctors are in a practice they should split the big things between them and get up to date with their allocated topic so at least if your preferred doctor was struggling he could say I'd like you to see Dr X as he is more up to date etc.
Unfortunately the NHS barely understands T3, and the GPs at my practice haven't heard of NDT There is no way they can manage it. The choices with NDT are either to permanently see a private doctor to oversee your dose, or to self manage. It looks like your private doctor has really let you down, so you may need to change to self managing.
It's what I and many other members of the forum do.
I’m sorry to say I don’t think your endo. knows how to manage dissociated thyroid treatment or how to dose it. Good advice above as you need a dose adjustment and to be able to manage this yourself. And more comprehensive blood tests. Most of us have taken responsibility for our health as it dawns on us that the doctors don’t actually know how to treat us.
I feel like that all the time I'm on 200 levothyroxine a day sometimes can't even move hurt from head to toe so then I'm having to take 8_10 painkillers a day with codeine it's just a vicious circle than I'm permanently asleep on and off but my doctor would gladly do the blood tests but when they reach the lab their refused so iv reached the conclusion this is how my life has to be !!! Then some nurse asked me if I would be interested in trying a pain clinic er NO are these people brain dead I said only if I could have decent thyroid meds she looked at me like I was from another planet and told me that there was only one thyroid medication !!! I told her I won't be stopping pain med they may aswel bury me now
Sorry to hear your so poorly jackiehyland, I feel much the same. Lack of sleep doesn't help! pain clinic? madness, they need to sort out the underlined problem. It's a bit like me being referred to the chronic fatigue clinic
All medication comes with risk as there are side effects. Big pharma are happy for us to all be taking dozens of drugs.
Help is available for you but sadly not by the standard medical treatment. Dr Chatterjee has helped people stop their painkillers - it’s about finding the root cause and treating it.
Sadly this is why so many people are ill, it is costly seeing a functional dr or Nutritional therapist.
Some things worth looking into - magnesium, selenium levels and your B12, folate, vitamin d, ferritin.
Gluten and dairy free nutrition is ideal.
Are you able to go outside in fresh unpolished air?
I am still in shock that an Endo has switched you to ndt, when most of them are afraid of it or pretend they have never heard of it!
I have never come across a free t3 range like this? Ideally your free t3 would be towards the top of the lab range which is usually around 6 or 7. Whereabouts in the country are you?
I have learnt that it’s about getting all of your cells working together, it’s not always about thyroid meds. It’s having all of your vitamins and minerals optimal. Magnesium helps - either supplements, oil spray and/or Epsom salt baths or foot baths. Selenium, and are your B12, folate, vitamin d and ferritin all in the top of the ranges?
Nutrition - ideally gluten and dairy free ?
There is so much we can do, in an ideal world there would be many more functional nutritionists available. Root cause being treated ideally.
I would never accept a diagnosis of cfs, me or fibromyalgia - these are given incorrectly in my opinion.
Hi Chippysue, UK, WEST SUSSEX. I just don't know what to do. I have arranged some bloods with the NHS Doc ( my doctor ) B12, folate, vitamin d and ferritin etc. My doctor know's nothing about ERFA so could not advise me on what to do. She did say your levels are too low, I need to talk to the Private Doc, have emailed him.
To be honest it’s a choice between lowering Erfa slightly or increasing slightly and see what happens.
Prior to these thyroid blood tests this is exactly what people did. It’s a good idea not to make any other changes at the same time and make a note of symptoms/dose too.
Yes I split the dose. 2 in the morning ( as advised by the Endo) one in the afternoon and one around 6 pm. I am finding I cannot sleep properly. probably only get 3 hours per night
I would say the second dose is better at lunch time.
You need good quality sleep! It’s so important!
I can highly recommend CBD oil - a few drops 2 hrs before you go to bed.
But do try and work out the cause of your poor sleep, it can be a symptom of hypothyroidism. I slept 20 hrs per day when I was ill but it was unrefreshing sleep.
Good Morning Chippysue, I am interested in trying the CBD Oil, anything if it helps me sleep. Had yet another poorly night! Where can I purchase this product?
I agree that it has been too much NDT too suddenly. I swapped very slowly from Levo to NDT replacing 25mcg Levo with 1/4 grain NDT following the Thyroid Patient Advocacy guidelines. Most people needed around 2 grains when it was the normal medication. I was on 125mcg Levo and initially only needed 1.25 grains but now take 1.50 grains as I needed an increase after a couple of years. It looks like c.1.75 might be closer to what you need than 3 grains but each person is different.
The thyroid patient advocacy has good advice on how to determine your optimum dose I will post the link for you. I would drop back the dose perhaps to 1 grain and slowly work up until you feel right and that will be the right dose for you.
I feel a lot better on NDT the improvement was almost immediate ie. noticeable after just 3 days with only a 1/4 grain. I hope you find the same relief with it 🍀☘️🍀
Tanny, you are so over medicated you really should follow the above advice. You are not realizing that T4 has a half life of two weeks. This means the extra grains you took will not wear off quickly. Personally I would stop everything for a few days.
Yes there is something strange about your results. Your freeT3 is extremely over range, and your freeT4 is pretty high, but your TSH Haggis not suppressed and is still fairly high.
TSH stands for thyroid stimulating hormone, it is a chemical messenger made by your pituitary gland to stimulate the thyroid into action (even if you don't have a thyroid). The less thyroid hormone in your blood, the more TSH is made to call for more. FreeT4 measures storage hormone, and freeT3 the active hormone. Your body has to change T4 into T3 before it can use it, and freeT3 will be the one that's most closely related to symptoms.
I'm a bit suspicious that this test might have some problems. As others mention the range for freeT3 is very unusual. I assumed you were outside the UK, as most of the labs here seem to have a top of the range closer to 6. If the ranges for yours have been quoted wrongly, the non-suppresed TSH would make more sense. Also I'm concerned that these tests were not taken after a 6 week hold on the same dose. You've only been on the NDT for 3 weeks so there can't be any accurate blood tests about these doses, yet. This might explain why the TSH doesn't seem to match the other measures. They can all take a while to respond to a new dose.
I agree with others that you definitely want to get your vitamins and minerals tested, Folate, Ferritin, Vitamin B12 and D are the most relevant. I think with the NDT you need to get some retests including both freeT4 and freeT3. To do that you need to hold on the same dose for 6 weeks, and then get an early appointment, no meds for 24 hours. An easy way to do it is to order a mail order, finger prick test from Blue Horizon or Medichecks.
It's looking strongly like you're on too much, so maybe cut back to the previous dose you were on, 2 grain or below, stick with that for the 6 weeks. It seems ideal to get to a dose now that may be too low, so that you can slowly increase and hopefully hit your sweet spot.
I'd say you were now slightly over medicated and you've missed your sweet spot with Erfa by increasing too fast. You need Free T3 tested not total T3 (which is not useful to know). Generally, on NDT, your free T3 should be in the top quarter of the range and free T4 about the midpoint. You also need optimum levels of B12. folate, ferritin and Vitamin D.
If those results hold good with an FT3 of 5.6 then you are overmedicated.
Don’t wait for a doctor to reduce your dosage. Do it yourself. No wonder you feel awful.
Drop it down to 1.5 grains which is approx. 150mcgs levo and see how you feel. Then increase by 1/4 grain at a time.
Broda Barnes used to medicate the way your doctor has suggested. He would give a large dose for 4 weeks to get the T3 in the body and then pull it back at the 4 week stage before the T4 started to convert. I understand your Doctors logic but you had already been taking levo and therefore your blood levels were already optimal.
Thank you. It's no wonder that long-term Levo isn't a solution for so many people since there seems little or no interest from the medical people, GPs in particular, in treating the underlying autoimmune issues. Thanks again.
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