Hi all I am desperate for help. I read your posts eagerly every day with the hope of a glimmer of help.
I am a 40 year old woman with a complicated medical history which includes: Tonsils removed, gallbladder removed and extensive and vicious stage 4 endometrioses, which I have had several very complicated surgeries for on pelvis, bowel, bladder and some ovary removed. Due to this I am on Prostap 3 injections (forced menopause) and have a Mirena coil.
In 2009 I had Graves’s disease with two huge goitres in my neck and thyroid eye disease. I had a total thyroidectomy in 2009 as I was on the highest dose of Carbimazole and Beta blockers which did nothing for me at all..
After my surgery I started my journey on a MASSIVE 300mcg of Levothyroxine. I kept on this dose for approximately 4-5 years. In around 2014 I had blood work and the dose was dropped to 250mcg.
A couple of years ago my thyroxine was dropped to 200mcg and at the beginning of 2017 reduced to 150mcg.
For the past few years I feel SO SO ill. I am so exhausted all the time even after sleeping for 12 – 14 hours. I can’t be bothered to do anything including work which was always my passion.
I am fat with my weight creeping up at least 2KG a week if I don’t literary starve myself, and you can forget about eating carbs!
I have thin hair which falls out, spotty skin with boils on my chest, back and spotty upper arms.
FREEZING and blue hands and feet when everyone else is warm (It’s not Reynaud’s).
I swing between constipation and diarrhoea with lots of mucus and blood in stools
Allergic urticaria
( have seen an Allergist and all normal allergy results were clear, although this is ongoing as looking into the urticaria)
Mood swings and SO angry /rageful
Really severe Pie crust / scalloped tongue
Acid in sleep..Waking up choking (wonder if this is sleep apnoea after reading your posts??)
Black circles under my eyes and very poor sleep.
I have recently also had 3 episodes of feeling like I’m going to pass out after a weird sensation behind my eyes.
My current medications are:
Levothyroxine 150 mcg
Citirize 10mg daily
Lymecycline 408mg
Prostap 3 injection 3 monthly
Oestrdiol pessary 2x weekly
Folic Acid
In the last year I have done my own research. I cut Gluten, dairy, soy, egg and nuts out for 8 weeks with not much improvement at all. I started taking folic acid, Vitamin D3, B complex, Multi vitamin and salmon oil.
I took myself to an integrated Dr which cost a fortune and he did the following tests:
Total Thyroxin (T4)85nmol/L (59-154)
TSH *0.17mIU/L (0.024 – 4.2)
Free Thyroxine 20.76pmol/L (12.0 – 22.0)
Free T3 4.4pmol/L (3.1 – 6.8)
25 OH Vit D75nmol/L (50 – 200)
Thyroglobulin Antibodies 36.5IU/mL (0 – 115)
Thyroid Peroxidase Antibodies *50.7 IU/mL (0- 34)
Reverse T3 *26 ng/dL(10 – 24)
ALT 42*Iu/L ( 1 – 31)
Uric Acid 89*umol/L( 140 – 360 )
AST 27 lu/L (1- 32)
Vit B 12 *712 Pg/ml (197 – 771)
Folate serum >20 ug/L ( >2.9 )
Ferritin 138ug/( L13 – 150)
I had a Thyroid hormone urine collection over 24 hours with total urine collected (1,900 volume)
T3 – Triiodothyronine (RIA) 105nmol/24h ( 0.61 – 3.38 )
T4 – Thyroxine (RIA) 2.79nmol/24h (1.03 – 8.24)
Adrenal stress profile:
Cortisol saliva taken upon wakening and throughout day :
Sample 1: 6.32 (2.68 – 930)
Sample 2: 2.18 (0.75 – 2.93)
Sample 3: 1.27 (0.36 – 1.88)
Sample 4: 0.14 (<= 0.94)
DHEA sample: 0.72 nmol/L (0.25 – 2.22)
The conclusion from him was that although my ranges were fairly ‘normal’ they were on the low end of normal and that I would benefit from a therapeutic trial of T3. He suggested that I go and see an endocrinologist for this.
I have now seen and Endocrinologist only to be told that the Endo doesn’t believe in Reverse T3 or any of the other tests I have spent a fortune having done! He has advised me to drop my thyroxine to 150mcg one day and 125mcg the next day alternately so that my TSH goes down.
He has also recommended more oestrogen as he thinks I’m deficient .
My thinking is that if I am over replaced with Thyroxine, why am I getting SO fat every day and why am I so tired??
He says my malabsorbtion screen is negative and I am absorbing T4 and am not coeliac.
I really feel my body isn’t converting T4 to T3 adequately. I feel so dreadful and really feel T3 would benefit me and solve 90% of my problems.
Please please can anybody hep with deciphering test results??
What should I do next? What should I ask the Endocrinologist?
Thanks so much for taking the time to read. I am so grateful to you all the advice you give us all xx
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AuntieMandy
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You're right, you don't convert well. You have high levels of unconverted T4, which is converting to high level of rT3. You do need to drop your dose of T4, and add in some T3. I think you also need to drop your endo. Seems to me, you've given doctors a fair whack, and they've left you in this state. Time to take control of your own health. I very much doubt you're going to find an endo that will prescribe T3, in the present climate, so buy your own - and an endo who says he doesn't believe in rT3, is just showing his ignorance. lol How does he think it shows up on blood tests, if it doesn't exist! lol But, if he means he doesn't believe it's a problem, well, it isn't in and of itself. But, it would be far better if the T4 were converting to usable T3.
What is Citirize? I don't know that one. And why are you taking folic acid? Your folate level seems adequate.
"My thinking is that if I am over replaced with Thyroxine, why am I getting SO fat every day and why am I so tired??"
Because you aren't converting that thyroxine to T3. T4 is a storage hormone. It has to be converted to T3 to be active. Quite why you aren't converting, I don't know. Your nutrients are good - although vit D3 should be a bit higher. Your cortisol is mid-range - although I think you made a mistake with the range in sample 1. I very much doubt it goes from 2.68 to 980! More like 2.68 to 9.80, no? It's a mystery. But, whatever the reason, you don't convert well, your FT3 is low, and it's low T3 that cause symptoms like weight-gain and fatigue.
Having said that, starving yourself, and not eating carbs, is not going to help your conversion. You need calories to convert, and you need carbs. You are not putting 2 kg a week due to what you eat, that's physically impossible. You're putting it on because your T3 is low. However, I doubt if I can persuade you to eat three square meals a day, so the alternative is buying your own T3 and self-treat. Are you prepared to do that? If so, write a new question, asking people to PM you with links to their trusted sources of T3. We're here to help you with doses and things. It could be the making of you!
Thank you so much. slow Dragon! Dr Wentz was where my whole journey of self healing began. She is wonderful and I've learnt so much from her.
Fab articles.
I very specifically asked my Endocrinologist if I had hashimotos as so many of my symptoms presented like that. He said because I have had a total thyroidectomy and have no thyroid it's not possible for me to have hashimotos. I wish I could see someone else now!! X
You could put a post up specifically asking for T3 suppliers. Yes Greek is a problem. I think Turkey might be OK
The other option is a T3 friendly medic and private prescription. Email Louise at Thyroid Uk for list of recommended thyroid specialists
Louise.roberts@thyroiduk.org.uk
just noticed you say you're taking a multivitamin, if it's got iodide in suggest you stop it. Iodine makes Hashimoto's worse. Multivitamins not recommended anyway
Remember with B complex to stop taking 3-4 days before any future tests, Biotin can falsely affect the test results
Thanks for the amazing reply Greygooose. I'm grateful.
It's Citirizine antihistamine.
I started taking folic acid as I want to egg collect. I will stop taking if you think it's unnecessary with results.
The cortisol was 9.80 typo lol.
I already posted a few months ago trying to get sources for T3. I just couldn't get any leads. Greece is out and the internet companies weren't reliable. I've been abroad and tried to buy with no joy. I feel like I'm hitting my head against a brick wall!!!
Your reply has reassured me I'm not going mad! Thank you!! Xx
The reference range for sample 4 is ludicrous. It includes 0 as a "healthy" level for cortisol at bedtime. Personally, I think a cortisol level of 0 is probably only healthy for a corpse. The reference ranges must have been created from results from people who have not been screened to exclude those who are sick, suggesting that the ranges are too wide, and they allow for levels which are too low and too high. But I shall plough on regardless ...
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If we compare your results to the optimal levels we get :
Sample 1 : Optimal = 9.30 --- Yours = 6.32 which is 68% of optimal
Sample 2 : Optimal = 2.385 --- Yours = 2.18 which is 91% of optimal
Sample 3 : Optimal = 1.48 --- Yours = 1.27 which is 115% of optimal
Sample 4 : Optimal = 0 --- Yours = 0.14
Totals : Optimal = 13.165 (3.79 - 15.05) --- Yours = 9.91 which is 75% of optimal
So, you have two issues. Firstly, you aren't producing enough cortisol in total per day, and secondly, what you are producing is being produced as a sort of "last gasp" as the day goes on. Your body is clearly under stress and has been for a long time, and now your adrenal glands are starting to wave a white flag and give up.
If you look at the banner on the above link, to the right of the telephone number is a series of links (AF stands for Adrenal Fatigue) :
About AF Syndrome ; Additional AF Info ; AF Recovery ; etc...
Click on each of the links and read the articles.
Another possible source of information is Paul Robinson and his Circadian T3 Method. He works on the assumption that the adrenal glands can recover normal function if T3 is used in appropriate doses at specific times of day.
Note that Paul has a Facebook page and I think he has a private Facebook group too. He has also written a couple of books. He has appeared in a few Youtube videos as well.
Izabella Wentz is worth reading. She has a website, a Facebook page, has written a couple of books, and has appeared in several Youtube videos. She is a Hashi's sufferer herself.
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One thing to remember is that stress comes in several forms. People generally think of stress as being caused by overwork, a bullying boss, or something like that. But stress can be physical/physiological and/or psychological.
Physical or physiological stress could be caused by taking too much exercise or too little, not eating enough or eating lots of junk, not getting enough sleep, can be caused by having too little T3 or the wrong levels of thyroid hormone for you, non-optimal nutrient levels, eating gluten if the body can't tolerate it very well, eating dairy if the body can't tolerate it very well. Other causes of stress could be eating food containing histamines when your body needs a low histamine diet or eating nightshades if your body doesn't tolerate nightshades. Eating a diet which is restricted for no good reason will be stressful too. There are probably lots of other possible dietary issues as well.
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Some people treat their low cortisol levels with hydrocortisone. I don't know how people get hold of it if it isn't prescribed. I don't think you are at the level of needing hydrocortisone yet anyway, but if you decide to go ahead with it, note that this is something which has to be done extremely carefully, and you could shut down the adrenal glands altogether, for life, if not done carefully. So if you decide to treat yourself with hydrocortisone, ask for advice on here first and do extensive research.
Also note that some people with low DHEA (or low in range like yours) feel better if they supplement with it. It is possible to buy supplements for it online, but it is banned in the UK so it may be confiscated by customs. I've never needed to buy it myself, and have no idea how likely that is to happen. (DHEA is an anabolic steroid, much loved by body builders I think.)
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Some people use adrenal glandulars to boost their cortisol levels, and I suspect these are probably your best option at the moment, at least to start with. They can be bought without prescription, and are legal in the UK. The most popular one for years was Nutri-Adrenal or Nutri-Adrenal Extra (NAX), but the manufacturer is having problems getting the ingredients and it is currently unavailable. So now people are taking other makes, such as Adrenavive. I have also found a product called Adrenevive - I have no idea if it is a different product or not. I don't know enough about any of these products to know which one of these you should look in to. Do some searching on the forum - I know lots of members take adrenal glandulars, but I'm not one of them. Do a search for "glandular", ask questions about them, search for Adrenavive and Adrenevive.
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