Asking on behalf of my 20yo daughter. She recently had a battery of blood tests via an endocrinologist, triggered as a result of massive fatigue, hair thinning, dry skin and very rapid weight gain (20kg in a year even when eating fairly healthily). She was diagnosed with PCOS and her TSH is highish - 7.4 (range .27 - 4.2). However, her antibodies were negative and a throat ultrasound concluded "no signs of thyroid disease". What is puzzling me is that her T3 and T4 seem to be fairly optimal - T3 was 6.5 (range 3.1-6.8) and T4 was 18 (range 12 - 22). B12 was well into the normal range, although her ferritin was low so we will address that, along with vit D, as I know these could both be contributing to her symptoms. Looking back, I think she has had PCOS for a long time but all these issues only started 2 years ago, which suggests it might be something new. Has anyone else had a highish TSH caused by PCOS and no actual thyroid disease? She is starting on levothyroxine (currently 50mcg) and metformin but I am wondering if the levo will do much given her T3 and T4 are both fine? Is lowering TSH alone going to make any difference?
Subclinical hypothyroid and PCOS: Asking on... - Thyroid UK
Subclinical hypothyroid and PCOS
However, her antibodies were negative
Were both TPO and TG antibodies tested
How low was ferritin
Has she had full iron panel test for anaemia
Has GP/endo prescribed any iron supplements
How low was vitamin D
No folate result?
What was B12 result
Retest thyroid levels 6-8 weeks after starting on 50mcg levothyroxine
Make sure to take levothyroxine on empty stomach, then nothing apart from water for at least an hour after
No other vitamins or supplements within 2 Hours
Vitamin D tablets, magnesium and iron at least 4 hours away from levothyroxine
Iron at least 2 hours away from other supplements
Which brand levothyroxine has she started on?
See how levothyroxine helps with symptoms
Metformin may lower TSH as well
cureus.com/articles/50564-e...
thanks for the detailed response!
Both antibodies were tested and were negative (medichecks test).
Ferritin was 20 (range 13-150), vit D was 68 (range seems to be 50-200) and folate was 8.8 (range 2.9-20) - so all “within range” but not optimal so will supplement all 3. Dr only mentioned vit D, no iron prescribed.
B12 was 108 (range 25-165) which seems ok to me. She’s already taking a vit B supplement.
No iron panel but full blood count was done. Red blood cell count was slightly above the range - all other values (MCV, MCH all at the low end of the range). She also has slightly high cholesterol and raised ALP. Liver scan was clear.
I don’t know what brand Levo she is taking. She’s been on it for about 4 weeks and is due a follow up blood test in a couple of weeks. I’m expecting the dose to be increased as her weight is currently v high so 50mcg won’t be doing much.
These numbers and the situation read so similarly to mine over the last couple of years or so. I hit a wall with levo and started becoming symptomatic again despite optimal-on-paper numbers. Private GP suspected PCOS and high testosterone were causing much of my T3 was being converted to reverse T3. I’m afraid I’m not very knowledgeable around exactly how this works but understand there’s a pretty solid link.
Private GP has moved me over to T3 only and I’m now off levo. The thought process being that I wasn’t hypo ion a serum level but I was on a cellular level and taking T3 only floods the cells.
It’s been a game changer for me in terms of symptom relief. Still a way to go but I’ve seem more progress more quickly on T3 than on levo.
thanks so much for sharing your experience. This might be a dumb question but can they test for reverse T3 or is it more trial and error with medication/symptoms? It’s hard because she definitely has PCOS (ovary scan, highish testosterone and one other male hormone) but her symptoms could be PCOS or thyroid! (Or some of the other low vitamin/ferritin levels but we can supplement to rule these out). It’s horrible to watch a young person struggle so much with no clear answers…
No dumb questions here! It can be tested absolutely but whether it would be done in the NHS is a different question entirely. Some endos in some trusts might do it but imagine it’s very varied. My tests were run by my private GP initially and I’ve had my own done by Blue Horizon since.
Can very much empathise with her situation, especially trying to distinguish between two conditions that overlap such a lot. And both seeming to be difficult to get answers from medical professionals on! I’m very much taking the view that any progress is good progress and hoping that if I keep chipping away it’ll start to snowball. Hope you can catch a break for your daughter soon 🤞