Hi, I'm 54 and been diagnosed with Hashimotos for about 13 years. I think it probably started when my second child was born but instead of a blood test my gp kept offering me antidepressants, eventually when I was crawling up stairs on hands and knees and sleeping all day when my children were at school, as well as all night, I was diagnosed when my second child was 6! Although medication had some impact I've never really felt well. Anyhoo, this year I had the DI02 gene test which was positive. I've taken my first T3 today I'm on 20mcg a day in the form of half a tablet twice a day.
Any recommendations as to the best time to take the tablets? Should I supplement with Calcium to address the osteoporosis issue? What have other people experienced when starting T3? The endocrinologist rushed through everything and left no time for questions so I'm feeling a little in the dark as to what I should do to counter any side effects.
I am two years post menopausal, I was convinced I was in perimenopause in my mid to late thirties, GP insisted I was too young and refused to test to see. So my symptoms have been hellish, gone through without any medical input because according to gp I wasn't going through menopause and again she kept shoving the antidepressants at me.
I was interested to see a recent post on feeling hot. I have suffered from excessive and embarrassing sweating even in the cold or airconditioned cars and rooms since the birth of my second child (traumatic birth). Sweat pours from my face, head, chest, back and groin but NOT my armpits, hands or feet. My clothes get soaked and salt stained with white patches on coloureds so I mainly wear white shirts to counter that although the wetness is still visible. Separate to that I have dry hot flushes. I don't sweat at night in bed. I have been like this prior to and after being diagnosed and prescribed Levothyroxine.
I am now having physical difficulties my body is stiff, it takes me ages to walk down the stairs in the morning. As long as I keep moving I'm ok, but if I sit for more than ten minutes everything seizes up again. Moving is fine but when perpetually exhausted moving is also hard work in a different way. My major muscle groups, especially my thighs hurt like they've been repeatedly punched. I don't think it's a joint issue regarding stiffness, it's coming from my muscles. There's also weakness and some days I have to use two hands to lift a kettle to make a cuppa, and even then I feel like I'm bench pressing my own body weight! Basically I feel about 100 years old! The impact on my life means I'm unable to work full time, so I work for myself from home. I dread to think how I would survive financially without my long suffering and very patient husband.
I'm very much looking forward to seeing if T3 helps me in someway, although I'm sure all my symptoms are not necessarily linked to T3 conversion issues. I'd love to hear other peoples experiences of taking it and my main concern is will my sweating worsen as I've seen this can be a side effect of T3 replacement. Many thanks.
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Has Endo reduced Levothyroxine, if so by how much?
Usually recommended starting on just 5mcg twice a day. Waking and mid afternoon. Retesting after 6-8 weeks and perhaps adding third dose after test results
Have you taken first 10mcg?
As you have Hashimoto's low vitamin levels are extremely common
Have you had vitamin D, folate, ferritin and B12 levels tested at all....especially recently
What vitamin supplements do you currently take?
Add vitamin results and ranges if you have them
Many people find vitamins need to be optimal, generally, but especially before starting on T3
As you have Hashimoto's are you on strictly gluten free diet or tried it?
Just like Levothyroxine, many people find T3 brands especially are not interchangeable
Traumatic birth can cause Sheehan syndrome
Has Endocrinologist considered this?
I am also DIO2, Heterozygous and Hashimoto's and gluten intolerant, multiple vitamin deficiencies. More on my profile how I started and manage T3
I've been taking 125mcg levothyroxine for about a decade. Endo reduced this to 100mcg on commencement of T3 replacement. Yes took half a 20mcg tablet about three hours ago as soon as the postie delivered them!
Results from earlier this year.
CRP HS 1.68mg/L
Ferritin
66.6ug/L
Folate - 4.66 ug/L
Serum Vitamin B12 - 61.000 pmoi/L
TSH
Free 3.49 mlU/L
T3
Free 5.02 pmol/L
Free Thyroxine 19.800 pmol/L
Thyroglobulin Antibodies 497.000 kU/L
Thyroid Peroxidase Antibodies 35.4 klU/L
I've been taking Vit D suppliments and I am due to have blood tests soon to see if it's improved.
Not on gluten free, have only recently as in days, found out that this could help so I am going to give GF a go and see what happens. I've never heard of Sheehans, will google that now and have a look at your profile. Thank you for your reply.
Your TSH at 3.45 was far too high for someone on Levothyroxine
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
How low was vitamin D before starting on supplements?
How much vitamin D add you currently taking?
Bone pain was excruciating.....I had been very deficient for years. Discovered recently I had been tested in past and result was extremely low......but had never been told by GP or prescribed any vitamin D
Pain slowly faded after about 3-4 months on high dose.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Thank you so much for all this advice! You're amazing! I'm going on holiday tomorrow so will try and pick up a coeliac testing kit from lloyds on my way to the M25. That's a starting point. Will keep on eating my normal diet. Add in B12 in a week or two. I'd ruled out coeliac because I'm overweight but I have terrible issues with my bowel, and again the opposite of what you're supposed to have with an underactive thyroid. Always explosive, lots of pain and bloating, I even pass out, most recently a couple of weeks ago in the middle of the night when I had to get up because of stomach cramps. I start to feel nauseaus, bowels empty in seconds like a tap on full, cold sweat, I can't see, feel floppy and often pass out. Last time I hit the floor head first and had concussion and a huge swelling on the side of my head in the region of the jaw muscles which made eating and toothbrushing difficult for about a week as I couldn't open and close my mouth properly. Felt seriously sorry for myself.
So it sounds very like gluten may be an underlying problem
I had zero gut issues.....but my legs wouldn't work! A bit like those clockwork dolls you wind up and they waddle along getting slower and slower.....that was me ....could only mangage 10-15 mins slow shuffle .....
It was only coming to the forum, seeing time and time again that Hashimoto's patients who tried strictly gluten free diet often found significant benefit. I had been tested twice for coeliac. Both negative. Yet, because I was so immobile I was advised to have (private) endoscopy (endoscopy on NHS, was several months wait and I was so incapacitated, was advised to do it straight away) .....when camera went in gastroenterologist couldn't believe I am not coeliac. But follow up DNA test (on NHS) says "probably not coeliac". To me it's academic.....I just stick to strictly gluten free diet.... it's relatively easy once you get use to it
I just wish that GP's or endocrinologists would
A) always test for coeliac
B) if result is negative, still advise all Hashimoto's patients to try strictly gluten free diet for 3-6 months, to see if it helps
Because the ONLY way to know is to try it
Links about Non Coeliac Gluten sensitivity and autoimmune disease
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Thank you so very very much for taking the time to reply in such detail, I am indebted to you. I wish I'd come onto this forum years ago! I'm off on holiday alone tomorrow to the Cotswolds for some quiet time away from the stresses and demands of family life. I will read up on the links you've posted and come up with a plan of action.
Not initially, but my blood pressure has gone up a bit. Feeling a little light headed but I often do with associated dizzy spells. I feel like a walking A-Z of symptoms and that my gp just considers me a hypochondriac.
Oh My God! Just speed read your profile! This is so interesting and the thing that has really jumped out at me, something I hadn't mentioned in my post is bone pain! I have had this, a new symptom since starting the Vit D supplement! At times it has been unbearable, doctor putting it down to my severe depression and suggesting antidepressants yet again! Which by the way, I have tried once, reluctantly for a month about five years ago and felt even worse. I'm going to look at what you have done, will definitely take magnesium supplements and look at the B's and go GF, which will be excruciating as I love making my own pasta and sourdough bread. But if it helps me to live a more active and normal life I can't not do it.
I don't think I have Sheehan's, no great blood loss but I did suffer from about a week of low blood pressure which caused me to pass out. However my blood pressure is always in the 140 over 90 range, which is not great either. No weight loss, I battle with that. Interesting though.
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