I’m posting today out of desperation and looking for help after being trapped in this hellhole of a situation since March of this year. I’ve seen such great advice being given out here and am really hoping that someone on this forum has gone through what I’m going through and came out on the other side. In May of 2020 I was diagnosed with “subclinical” hypothyroidism with a TSH of 7.14 (ref 0.2-4). My only presenting symptoms at the time were bradycardia (40 bpm resting), extreme fatigue, and hair thinning. My GP started me on 25 mcg of synthroid and I stayed on this until March of 2021 when things went downhill very quickly. I suddenly started experiencing extreme anxiety and depression, cold hands and feet, excessive sweating, intolerance to both heat and cold, ringing in the ears, and worst of all terrible brain fog to the point where I could no longer read or speak for hours at a time and just sat on the couch or in bed. My tsh at this point was 5.41 still on the 25 mcg of synthroid and my GP decided to take me off of the synthroid thinking it was the problem. It has been a long road since then with constant dementia like symptoms, I’ve lost my job as a chemical engineer as I can no longer complete even the most basic of tasks, lost 20 lbs (175 to 155), and am just a shell of my former self wilting away each day. After being tested for many different diseases along the way, it looks like the only abnormalities have to do with the thyroid/autoimmunity/hormones. Prior to this, I was a competitive athlete playing soccer at the varsity level and am now barely able to get out of bed each day, forgetting everything I do immediately after doing it. My list of symptoms are endless as I’m sure many of yours were prior to optimal treatment but the cognitive decline is so bad it is as if I’ve acquired dementia as a 24 year old and I am so terrified of this all. I have been working with an endocrinologist since August and he thinks I am not converting T4 to T3 adequately which is causing my symptoms. He has started me on a starter dose of just 5mcg T3 (cytomel) daily with NO T4 so I am currently just taking 5mcg of T3. I’m extremely confused by his approach as I feel this is almost nothing and will likely have no effect as I haven’t noticed anything so far (6 weeks in). I’ve included my labs both before starting any meds and after 6 weeks on the 5mcg of T3. Interestingly enough my TSH actually went up.
Before meds:
Vitamin D: 103 nmol/L (80-200)
Vitamin B12: 683 pmol/L (>160)
Ferritin: 100 ug/L (30-400)
ANA Titre: 1:160 (0) *High
TPOAB: 12.2 kIU/L (0-34)
TGAB: 36.1 kIU/L (0-35) *High
TSH: 5.41 (0.2-4) *High
Prolactin: 24 ug/L (4-15) *High
FT3: 4.3 pmol/L (3.5-6.5)
FT4: 16 pmol/L (10-25)
After 6 weeks on 5mcg T3:
TSH: 6.03 (0.2-4) *High
Prolactin: 25 ug/L (4-15) *High
FT3: 5.1 pmol/L (3.5-6.5)
FT4: 15.4 pmol/L (10-25)
I don’t know what to do next and I feel absolutely horrible like I can’t go on like this. My endo wants to do 10 mcg T3 now and test again in 6 weeks. Do I really have to go up in such small increments and wait so long for each test? I feel like I have made no progress in the last 7 months and don’t know what to do anymore. Would the best next step be to add more T3 or add some T4 into the mix? Any help would be greatly appreciated, thank you all so very much.
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Oh, dear! You have been extremely unlucky in your doctors! Neither of them know the first thing about treating hypothyroidism.
The first one started you on a dose that was much too small - he should have started you on 50 mcg at your age, and increased by 25 every six weeks until he got to a point where you felt well, your TSH was 1 or under, and your Frees up near the top of the range.
As for the second one, you need to run away from him as far and as fast as you can! He doesn't have a clue! What was the basis for him 'thinking' you don't convert well? It's not something one even has to think about. One just looks at blood test results for FT4 and FT3, taken at the same blood draw, and the answer is there as clear as day. But, you've always been under-medicated, so impossible to tell. The endo should have put you on a decent dose of levo first, until you were adequately dosed to see how well you converted, rather than jump in with 5 mcg of T3.
No, you don't have to wait six weeks between increases with T3. You can increase by 5 mcg every two weeks. But, this is best done whilst you are also taking levo, otherwise, you will have no idea what works and what doesn't.
The best advice I can give you is to fire this endo, and find one that at least has a vague idea what he's doing. This one is never going to make you well.
My GP tried increasing my synthroid to 50 which brought my TSH down to 3.4 and FT4 to 22 (10-25) with FT3 not measured however, I started feeling horrible bouts of anxiety with rapid weight loss and sweating so my GP quickly brought it back down to 25 mcg and that helped for a few months until things went completely downhill in March. Had I known what I do now, I would have requested for FT3 to be tested at that time and increased/decreased my dose based on that result because it was more likely for me to have been undermedicated/not converting with that TSH than overmedicated. Silly me went from 50 to 25 to 0 and pretty much started back at square 1 because I thought the medication was the problem but now I know the problem is just hypothyroidism. The endo I’m going to now has received great reviews from thyroid patients here in Canada on his ability to treat us but like I said, I’m very confused by his approach. I believe his basis for thinking I don’t convert well is my experience on the 50mcg of synthroid as well as my unmediated labs. I called him to express my concern and he said we could add 25 mcg of T4 at our next appointment if I think it would be beneficial but that’s on Nov. 18 which seems like forever when you feel like this. I wish I could just fire him and find someone who knew exactly what to do but the sad thing is that he is the only one who specializes in thyroid in my area and I have no energy left to find more doctors (been through many in the last 7 months and have had some horrible experiences with gaslighting and medical advice causing harm). Luckily he is pretty open to me suggesting next steps and doesn’t force much on me so if I go in to our next appointment with a good idea of what to do next, I think he would be receptive.
OK, well, before he messes any more with your thyroid hormones, I would suggest testing your nutrients: vit D, vit B12, folate and ferritin; and testing cortisol/DHEA. If any of those are suboptimal, it will be difficult to raise your dose of levo, and will affect conversion - although, I'm not convinced that poor conversion has been proved. Suboptimal nutrients will also affect your general health and cause symptoms.
Once those have been sorted out, I would insist on 50 mcg levo - 25 is really not helpful - and after six weeks on that, increasing T3 by 5 mcg every two weeks until reaching 20 mcg, then holding for six weeks and retesting and revising how you feel.
Hi I'm confused about why your high prolactin hasn't been explored, that can indicte an issue with the pituitary gland, such as a benign tumour. I had the same issue and had my prolactin checked. Mine was ok. Problems with pituitary gland can cause thyroid issues.
Hi! Thanks for your reply. I did have a pituitary mri done and all of my pituitary hormones checked which came out normal. My endocrinologist explained it to me as an increase in TSH resulting in an increase of TRH from the hypothalamus and this increased TRH induces the release of both prolactin and TSH from the pituitary, essentially acting as dopamine. This is why a good portion of hypothyroid patients have elevated prolactin.
Unless over 65 standard starter dose of levothyroxine is 50mcg
Bloods should be retested 6-8 weeks after each dose increase
ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Dose levothyroxine is increased slowly upwards in 25mcg steps until TSH is ALWAYS below 2
My GP started me on 25 mcg of synthroid and I stayed on this until March of 2021
So you were started on too low a dose. Bloods should have been retested 6-8 weeks after each dose change and dose should have been increased by 25mcg after each test
Most people when adequately treated will have TSH around or under one
Levothyroxine doesn’t “top up” failing thyroid, it replaces it
So almost everyone on levothyroxine will need to increase dose upwards until on or near full replacement dose, that’s at least 1.6mcg levothyroxine per kilo of your weight per day, though many people find they need higher dose
155pounds = 70 kilo
70 kilo x 1.6 = 112mcg as likely daily dose levothyroxine required
Essential all four vitamins are optimal.
High prolactin suggests autoimmune thyroid disease, likely confirmed by high TG antibodies
Have you had ultrasound scan of thyroid
You need coeliac blood test done too
Extremely common to find strictly gluten free diet helps or is essential
Would the best next step be to add more T3 or add some T4 into the mix?
Ideally you start on just levothyroxine
But as your already on T3, adding 25mcg levothyroxine
Always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
No other medications or supplements within 2 hours
(You can take T3 with levothyroxine)
Taking levothyroxine at bedtime often gives better results, and more convenient
Wait 6-8 weeks …..then retest..
Increase again by 25mcg …..retest 6-8 weeks later
Likely to need to be on at least 100mcg levothyroxine, plus T3 (often needing 5mcg 2 or 3 times through day )
Only increase levothyroxine or T3 at any one time, never both
Always wait 6-8 weeks to retest after each dose change
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Hi SlowDragon, thanks for the reply! I tried splitting the T3 into two doses but felt less crappy taking it as one big dose at 8am (10 mcg). Neither option makes me feel good at all, I’m hoping it’s because the dose is just too small. Is it fair to say that adding 25 mcg of T4 would be my most probable next step?
I also wanted to ask if I should go back down to 5 mcg of T3 as I actually felt a little better on that than I do on 10 mcg. I have only been on 10mcg for about 9 days and am wondering if this is just an adjustment period?
The problem with any thyroid replacement hormones is very quickly the pituitary “sees” any hormones you’re taking and reduces TSH ….breaking the feedback mechanism …..so your own thyroid stops working so hard, has a rest and you actually end up on lower dose thyroid hormones than you started with
This is why almost everyone on levothyroxine needs to increase dose up to full replacement dose over several months
How long have you been on 10mcg T3
T3 reduces TSH even more rapidly than starting on levothyroxine
That’s why the general advice is start on levothyroxine at 50mcg …increasing dose slowly upwards in 25mcg steps until TSH is always under 2.
Most people when adequately treated will have TSH well under one
Obviously you will need a prescription for levothyroxine, before you can start and an ongoing secure supply
If you were to start on 25mcg levothyroxine, you might consider dropping T3 to 5mcg
Hold at 25mcg levothyroxine plus 5mcg T3 for 6-8 weeks
Retest
Increase levothyroxine by 25mcg
Retest 6-8 weeks later etc etc
Alternatively you could look for thyroid specialist who would prescribe NDT (contains T4 and T3)
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