Hello
I'm looking for advice/opinion. Incredibly tired, hair loss, weight variable daily up or down lbs etc
In Nov TSH 5.5
FT4= 13.0 (12-22)
FT3= 4.4 (3.1- 6.8)
Started on 100mg Levo
TSH .01 and Levo reduced to 75mg now 6weeks later
TSH .02
FT 4= 15.4
FT3 = 4.4
Feel fine but now being told over medicated just based on TSH result
Any thoughts?
Thanks
Hi Lou,
No you're not overmedicated. Both your FT4 and FT3 are well within range.
In fact both are low in range.
Hi
Thanks for replying. I've been feeling fine on 75mg but I've just been reduced again to 50mg based on TSH .02 alone. I did the other tests privately.
I don't know how to improve T4 and T3 if Levo is being reduced
Any ideas?
My concern is you are going to start feeling worse if they've reduced you down to 50 mcgs.
You are not going to be able to increase either FT4 or FT3 without the necessary medication.
I am very frustrated for you but someone else with more knowledge should be along soon.
A lot will depend on how hidebound your GP is. Mine suggested a drop when my TSH was 0.05, however unlike yours they at least tested my FT4 which was right at the top. They are afraid of osteoporosis and cardiac issues and dont seem to grasp that those are only an issue if your FT3 is high (or you have other underlying health issues) which yours is definitely not!! My GP was sensible enough to accept my private FT3 result which was only mid range and left my dose alone, on the proviso that if I started feeling any hyper type symptoms I would return for review.
For starters I would refuse to accept a dose change based on TSH alone. Tell him you have taken advice on this forum which is signposted by NHS choices. Offer him your private results, if he wont be sensible state you will not accept a lower dose until he proves you are over medicated which will require FT3 and FT4 tests as TSH alone is not a reliable indicator.
Do you follow the testing mantra - earliest possible test, overnight fast (you can have water), dont take levo until after the test, this will ensure your TSH is as high as possible - if you take any supplements and they contain biotin, leave out few a few days prior to test as several comments suggest it can skew test results.
This excerpt may also help:
EXCERPT FROM BMA BOOK UNDERSTANDING THYROID DISORDERS BY DR ANTHONY TOFT (Endocrnologist and ex-president of thyroid UK!)
Question:
I feel better taking a higher dose of thyroxine than recommended by my doctor. Is this safe?
There is considerable debate about the correct dose of thyroxine. The consensus is that enough should be given to ensure that levels of T4 in the blood are at the upper limit of normal or slightly elevated and those of TSH at the lower limit of normal, or in some patients undetectable.
If you want the whole book it is on amazon for about a fiver.
There is also the TUK treatment and diagnosis leaflet which has some relevant bits about 3/4 of the way through.
Good luck
PS Once diagnosed I went through 4 GPs before I found a keeper so if yours wont budge, try another one at your practice 😀
Hello
Thanks for the advice, the thought of Levo being reduced and going back to feeling more tired in the morning than at night, weight going up despite not eating much, numb hand and arms in the morning, periods lasting for days losing massive blood clots (GP told me this is not s hypo symptom!!), hair loss .....I'll do more reading.
At TSH 5.5 I was told I was subclinical even with the symptoms above then 6 months later after a private blood test persuaded GP into Levo trial. At the next TSH .01 I was told I was subclinical hyper with no symptoms.
Thanks again
Have you had your vits checked, numbness in hands etc is often associated with low vit B12, hairloss with B vits and ferritin, Fatigue with B12, ferritin and vit D. We often dont absorb nutrients well, which has a knock on effect on absorbing our levo fully and then converting it properly.
Try to get B12, Folate, D and ferritin tested if not already done and post any results with ranges on a new post for advice as these must be optimal not just in range to telieve symptoms and convert properly! My fatigue has improved a lot now my deficiencies are being resolved and I seem to have a bit of thin fuzz appearing 🤞🤞it continues to grow.
Long heavy periods/frequent bleeds can decimate ferritin levels. I am not aware of clots being a symptom but it is always possible. Alternatively, you could have an underlying gynae problem which is showing now your thyroid levels have improved, low thyroid levels could have been masking it. If GP thinks not thyroid related ask for a sex hormone panel or gynae referal to rule out things like PCOS (irregular periods (not always absent), weight gain, fatigue, hair loss, inappropriate hair growth, spots or any combination of...) or any other dysfunction as like the thyroid its all part of the endocrine system and often more than one bit will be misbehaving.
Have you seen the symptom checklist on TUK, you may be having a lot of small symptoms you have not connected and he will be hard put to ignore them all. also some good advice I was given.....
Be specific especially when describing things - eg I used to be refreshed after 8 hours sleep now I wake up still tired after 10. I used to enjoy taking my dog for 5 mile walks, now I barely have the energy to leave the house or whatever fits your circumstance.
It means you are describing a quantifiable change rather than a more airy-fairy 'oh Im just tired all the time' it makes it slightly harder to be dismissive as you can start asking awkward questions like if its not my thyroid then what is causing it and what are you going to do to fix it - do not accept (if applicable), its your age, what do you expect with kids or similar.
Definitely read up, take print outs or a tablet with you and highlight relevant bits, phone up and get any blood results before appt or telcon with GP so members can help you interpret and give suggestions. Take a list of questions/someone with you if you get a bit foggy.
Hi
Many thanks, I have had ferritin checked before starting Levo. It was 15 range 12-150 got this up to 39 which I was told was normal! Sounded strange so read up on this and research said it needs to be 70-80 minimum for thyroid function. But I am going back to the docs and will ask for full vitamin profile
Thank you
Just spotted your last line - Your GP is very confusing/confused.
He tested your antibodies, he took notice of private test results, he gave you a levo trial when TSH only slightly above range - all better than a lot of GPs
Then
Would be more concerned if hashis - why? treatment is the same, ranges are the same, if he knows that gluten free is often good for hashis he is very rare!
He is still over reliant on TSH result and not taking into account that your FT3/4 need improving despite low TSH.
You cannot be hyper - subclinical/ overt, symptomatic/asymptomatic or any combination without high levels of FT3 - which you dont have
You cannot be hyper and hypo at the same time. You can be hypo and over medicated but this requires high Ft3/4 - which you dont have.
Hashi sufferers have a flare when part of the thyroid dies and dumps its store of FT4 and this can give them hyper type symptoms - you dont have hashis he said.
He seems more inclined to test/ treat circs others dont/wont but have very strange ideas in others. He may just be ill informed in some areas and need some education - they get half a day on the whole endocrine system apparently. Double check everything for yourself or with the forum and challenge him if needed. If he isnt willing to at least listen dump him. PS might be a bit cynical but did you actually see your antibody results or did he just say they were fine??
Hi
I accepted GP telling me it was fine!!! In the world of thyroid problems that's not good enough. I need be challenging. 😁
Unfortunately, very true.
There will always be someone who knows the right bit of research to quote or able to debunk your GPs strange ideas and you will soon get the hang of it, it just takes a while especially when you've got a bit if brain fog 🤔🤔
Well, you aren't as both FT4 and FT3 are low in range, not even in the top quarter which is where you want them. Some people just have to look at the outside of a packet of levo and their TSH drops like a stone. All it means is that your pituitary gland is taking a rest and has stopped telling your thyroid to produce more hormone.
Hello
Thank you for your reply. What does the pituitary not working mean if you are getting T4 via Levo.
Lou
This is why TSH is not the best indicator, it is not produced by the thyroid itself and not an accurate indicator of what the thyroid is producing or how much levo you are taking. It merely tells us how hard the pituitary is asking, which is why only testing FT3/4 tells us how much thyroid hormone we have
Sometimes when we are started on levo the pituitary seems to get confused by the sudden influx of hormone it has been shouting for and it drastically reduces TSH until it adjusts to the new situation. The opposite happened to me, my TSH went up even higher as if in relief at finally being listened to - surgery pharmacist asked if I was even taking my measley 25mcg, cheeky mare!
Do you have Hashimoto's thyroiditis (autoimmune hypothyroidism)? I was told many years ago by a less than conventional GP that those patients need a really low (0.05-0.1) TSH in order to keep their antibody and anti-thyroglobuline levels under control.
Hello
Thank you, no my autoimmunity is fine. The GP said he would be more concerned if I had hasimotos.
Loubylou17
If your GP tested your antibodies, he is actually better than a lot who wont. However, it makes no sense that he would be more concerned if you were. They do not treat hashi at all, only the resulting hypothyroidism and that is exactly what you do have, hypothyroidism! It is no more or less dangerous for you to have a low or suppressed TSH than it is for a hashi sufferer or anyone else. The main difference is that it is highly recommended that hashi sufferers go completely gluten free as it can help many to reduce antibodies and flares
Did you leave 24 hours between your last dose of levo and your blood test and have it done as early as possible and fast with only water before it.?
Jo xx
Hi Jo
Yes did the 24hrs, early and fasting TSH 0.02. Off to see the doc Monday to request more tests
B12, Folate, VitD and Calcium. I know ferritin is already low
Thanks
Lou
Hi again,
Blood thyroid levels are not a good indicator of tissue thyroid levels. TSH is not an good indicator of tissue hypothyroidism. The pituitary is under the influence of a different deiodinase (D2) to every other tissue in the body. D2 is highly active, if less prevelant. Many conditions including depression, fatigue, fibromyalgia and diabetes downregulate the prevalent deiodinase D1 which converts T4 to the active T3 in every other body tissue except the pituitary. On top of that, females have naturally lower D1 activity with the resulting depression, fatigue....etc, etc.
If you do not have symptoms of hyperthyroidism - you are not hyperthyroid.
If you have hypothyroid symptoms - you are still undermedicated.
Over medicated
Over medicated slightly? 
Over medicated ?
Agh…Whats going on with me? 
Dr’s appointment - need advise re : T3
