I wonder if anyone can help me, very long story which I will cut very short.
Hypothyroid for 15 years, been extremely ill to the point where I have been bed bound on many occasions, I have been told that I have CFS/ME, Fibromyalgia and Somatisation disorder, I was made to believe it was all in my head and that I needed CBT etc etc.
In desperation and after doing some research I decided to self medicate my levothyroxine to 200mcg per day which I have been doing for the past 3 months and I did feel alot better.
After many years and many doctors who I asked to refer me to an expert on Thyroid, I was finally referred to BRI Endocrinology. My appointment was last week.
Registrar of Endocrinology informed me that Armour was no longer prescribed in this country.
She told me to reduce my thyroxine to 125mcg per day and prescribed me 5mcg of T3 twice per day.
I started to take this on Monday of last week, although I dropped my levothyroxine to 125mg 6 days beforehand as Doc said I was highly likely to be taking too high a dose.
Said Doc rang me 2 days later after receiving my blood results, to advise that I was actually in range even though I was taking a high dose and that was when she prescribed the T3.
After 5 days of taking the 125mcg Levothyroxine and 5mcg twice per day T3, on Saturday I woke up feeling awful, I ended up sleeping most of the day and had no energy to do anything other than sit on the couch, right back to where I started.
This Doctor at the BRI has now sent me the results of my blood tests and I would really appreciate it if someone can get back to me with some advice as to why I am now feeling so awful after taking the T4 and T3.
Nb: These blood tests are when I was taking 200mcg of levothyroxine per day.
I asked her to check my cortisol and she said that the blood test came back fine the results are:
Cortisol:
319 nmol/L 172-497
Thyroid function test:
TSH: 0.64 mIU/L 0.27-4.20
Anti TPO antibodies 10 kIU/L <34
FREE T4 13.0 pmol/L 12.0-22.0
FREE T3 3.9 pmol/L 3.1-6.8
These numbers mean nothing to me so any help at all would be extremely appreciated.
Many thanks
Written by
katemimi1
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I'm sorry you are feeling so awful. At a glance your FT4 and FT3 are really low so it's no wonder you are feeling bad.
Sometimes it's better to look after your own health. You are a classic case of (when they cannot figure out how best to treat the patient) being diagnosed as:-
CFS/ME, Fibromyalgia and Somatisation disorder,
which sounds so familiar to many of us on this forum when we listened to the American Thyroid Associations Conference in the USA and that's what was recommended we be diagnosed with if our TSH was 'in range'. What a lot of tosh to be polite.
Your dose of levo was not sufficient for you, or your body didn't like a synthetic hormone. (Mine didn't).
Big Pharma - money in hand - has done a wonderful job in 'persuading' doctors = many through monetary incentives- that levo was better than a product which was used since 1892.
Many of our members on this forum are now self-medicating and recovering their health. It is a huge medical disaster in that thousands, especially with no internet - are suffering for years, years and years.
Free T3 is the most important as it is T3 is the active thyroid hormone which is required in the billions of receptor cells in our bodies and the brain contains the most. I will also give you an archived site (Dr Lowe died) and you can have a read through his topics. Some links within may not work but he has covered many topics.
p.s. Doctors can if the wish prescribe Armour on a 'named patient basis' but have been frightened against doing so in case they are prosecuted.
"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"
I hope you are feeling better now. Sometimes it seems we wonder if we'll ever turn the corner but we can do eventually with the support of the members.
I hope some of the experts on this site can assist, from my position of relative ignorance it seems T3 and T4 are rather low given the TSH result which looks OK but what that means hopefully others will tell you.
It is possible to have Armour prescribed on a named person basis or as a private prescription but Docs are reluctant to do it for various reasons.Armour is expensive and cheaper brands can be found on the net.
Make sure you eat at least one hour after taking the tablet so that absorption is not impaired. Are you taking any other medications that could affect the absorption of your thyroid meds ?
Your blood tests show you're not there yet. Did they explain why they want you to reduce your levo? Do they think you're resistant to thyroid hormone? But it doesn't make any sense to reduce levo while adding such a tiny bit of t3 if your results are so low. You're not showing signs of overtreatment anywhere on your tests or in your life. No wonder you're unwell. At the end of that five days you must have felt sedated!
If I were you I'd look at either finding a different endo or you could always try taking the Dr Toft article in (that worked w my gp) where he says some people only feel better when their tsh is under 1. And as Treepie says, you can get ndt in the UK on a 'named patient basis' so saying you can't is either ignorance or deliberate obfuscation.
I'm not a doctor but looking at those numbers I can't see what possible harm it would do to take your usual 200mcg levo along w 10 t3 (try a single dose in the morning). Your t3 is on the floor.
In my layperson's opinion, the reason you're feeling so ill on this combination is simply because you're on a dose that is too low and maybe not the right proportions to restore your health. If the endo's reasoning is that you're on a high dose of levo and your results show you're not responding to it then it would seem that adding t3 or switching you over to t3 entirely might be an idea, but 5mcg t3 X 2 per day is a drop in the bucket.
katemimi,
These tests are irrelevant if you have had a dose change and introduced new meds since, except to compare with your next set.... but T4 & T3 are both very low.
Your doctor should retest your thyroid hormones six weeks after starting new meds and alter dose accordingly. Post results with ranges (numbers in brackets) when you get them.
You were medicating 200 mcg Levothyroxine. By reducing to 125mcg and introducing T3 10mcg you are now taking the equivalent of roughly 160mcg Levothyroxine so you are undermedicated.
T3 has a short half life and the effects are usually felt very quickly. I noticed a big improvement within two days. However, 10mcg is too low a dose and should be increased to 20mcg which (with the 125mcg T4) would equal roughly the dose you were previously taking.
You are negative for TPOAb but need to get thyroid antibodies TGAb tested
as these can also denote Hashimotos.
Your serum cortisol level result is meaningless except to show your cortisol levels are not flat lined. Blood tests measure both the free and bound cortisol. Only the free is available for active use and can be measured by a saliva stress test.- link below.
Adequate cortisol is vital for good thyroid functions as low/high levels will interfere with the HPA axis decreasing TSH, lowering thyroid production, inhibiting T4-T3 conversion & increasing T4-RT3 conversion. It will also indirectly effect blood sugar levels so important to eat regular balanced healthy meals with carbs, fats and protein.
Cortisol is secreted in response to physical, emotional, psychological, environmental stress and infections. Your adrenal health may have been compromised after years of being so ill.
Low thyroid hormone & cortisol can cause low stomach acid allowing conditions such as Candida, IBS and bacteria infections. All this will further inhibit thyroid function and cause malabsorption of important nutrients.
People with thyroid issues often have iron & vitamin deficiencies. It is recommended that you have tests for Vit B12, Vit D, Folate and Ferritin as optimum levels are required to ensure thyroid meds utilised properly by the body. Again post results for members to comment.
This following link explains the importance of vitamins and where they may be obtained. This forum is supported by the charity ThyroidUK. You do not have to join the charity to benefit from this forum but by doing so you will be supporting the charity and also entitled to various discounts when buying supplements, as detailed in the link below.
Four saliva tests that measure the available "active" cortisol (& DHEA) secreted at set times over a 24 hours period. The results will allow you to see any imbalances in the daily circadian pattern so enabling use of correcting supplements to aid your adrenal health. Unfortunately this test is not generally used or recognised by GP's.
The cost is £77.00 which is a discounted price for ThyroidUK when code A42AQ is used.
Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
I really don't understand why, if you were feeling well on 200mcg a day of thyroxine, your endo felt the need to change anything. Levothyroxine is cheap for the NHS and it seemed to suit you.
I self medicated to 200mcg thyroxine after 15 years of feeling awful and being diagnosed with me/cfs fibromyalgia amongst others.
I never felt well on thyroxine hence my desperation to see an endo, alas she too was absolutely useless. So am now frustrated, angry and upset that the NHS can leave anyone in the state I am at the moment when all that is required are the correct blood tests and a decent Dr to interpret and treat accordingly. Shame on you NHS.
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