Need Help!! with dosage T4

[Pink-Flamingo1]

Hi I don't know if anyone can advise me. I started seeing a new specialist and I wonder if he really is the right person to help.

Basically in January I was taking 150mcg of Levothyroxine. Blood results Ft3 = 4 ( range 0.35 to 3.5) T4 is 12.6 ( range 7 to 25) and TSH 3.05 ( range 0.35 to 3.5. The specialist told me my dosage was too low so put me up to 200mcg. My blood results came back as Ft3 4.8 , T4 17.4 and TSH 0.02. (After 6 months on 200mcg)

My doctor then said I was taking too much and to go down to 160mcg. Blood FT3 =4.5, T4 15.6, TSH 0.16. ( taken after 6 weeks on 160mcg ) My doctor still says this TSH is too low and said I should take 160mg for 6 days and 80mcg for 1 day.

If you calculate this on a weekly basis 160mcg ×7 +80mcg =1040mcg per week. Whereas what I was on with 150mcg at the very beginning which was too low 150mcg× 7=1050mcg.

I have just spent the last 6months on 200mcg to then be advised to go back to a dosage lower than my original dose which wasn't enough.

I really don't know what I should be taking anymore. I feel as if the last 6 months has been a waste of time. I have been on 160mcg for 6 days and 80mcg for 1 day for the last 2 weeks and now feel tired again, am cold have achey joints and have constipation. I saw the specialist today and he said perhaps you are still taking too much and that can cause tiredness and he suggested I drop to just 160mcg for 6 days which would then actually be 960mcg per week.

Personally I think I need to be higher than 150mcg for 7 days but perhaps lower than 160mcg for 7 days?

I know it is a bit complicated, but I wondered if anyone can help to tell me what I should be taking. The specialist doesn't seem to make any sense to me and never has time to explain anything. Should I stop seeing the specialist. Many thanks.

[shaws Administrator]

Unfortunately, GPs seem to be the last people who understand about optimum thyroid hormones.

For instance, if TSH is very low, the assumption is that we're taking too much thyroid hormones and have become hyPERthyroid. That's not the case. We, the patients, feel best when TSH is 1 or lower (whereas many doctors think that it has to be 'somewhere' in the range). We also need a Free T4 and Free T3 to be in the upper part of the ranges. The latter two are rarely tested.

[Pink-Flamingo1 in reply to shaws]

Hi, yes my TSH at one stage was actually 0.40 and my T3 and T4 were also on the upper part of the range and I did start to feel much better. It is frustrating because the doctors always want to lower my medication, which leaves me feeling tired. I saw my doctor today and I told him what I thought and he actually agreed so thank you for your input. Perhaps I might actually get somewhere now. Thank you! 🙂

[shaws Administrator in reply to Pink-Flamingo1]

Oh! doesn't it make us astonished that we go to the medical professionals but have to tell them what we think will help us to recovery.

Tell GP, the next time you have a test, "are you aware doctor, that the TSH is not from the thyroid gland but the pituitary gland and it rises if the patient isn't on a sufficient dose of thyroid hormones, especially if the patient cannot convert T4 to sufficient T3. That's why we feel better when TSH is 1 or lower and should, occasionally have our Free T4 and Free T3 tested, both should be in the upper part of the ranges. "

[greygoose]

He's only looking at the TSH, which is not the right way to dose. The most important number is the FT3, so if he can't understand that, then no, he's not going to help you in any way, just make you worse. I'd give him his marching orders, if I were you.

Also, he should not have raised your levo by 50 mcg in January. Increases and decreases shouldn't be by more than 25 mcg every six weeks. He really doesn't seem to know much about thyroid at all. But that seems to be par for the course, these days. None of them know much about thyroid!

[Pink-Flamingo1 in reply to greygoose]

Hi, thanks for your reply. After reading your posts I actually went back to see my doctor this morning and he also thinks the specialist was wrong and he agreed that I should take a higher dosage than the specialist suggested . I am really relieved. Yes thank you, I will also keep an eye on the Ft3 and T4 to make sure they are on the higher part of the range. Yes I don't think I will continue to see the specialist any more. I also think perhaps he has taken on too many patients to cope with and he isn't really taking enough time to look into the full history of the patient. I agree that the high increase was probably not the right thing to do too. Thank you so much for your reply and input. 🙂

[greygoose in reply to Pink-Flamingo1]

You're very welcome.

[Miffie]

What a shame no one is looking past TSH . How have you felt with such a high T3? I see it was well over range after six months of 200mcg levo.

Hard to say what to do as with TSH at the 3.5 you were still over range on T3. I would be tempted to try considerably lower dose than 200 but higher than the 150.

It is hard to find the right dose, especially as we have a lot of the same symptoms when under or over medicated. Take care.

[Pink-Flamingo1]

Hi Miffie, I apologise, I have just realised I have written the range incorrectly for the FT3, it should be between 2.5 and 6.5, so when I first began on 200mcg I was feeling very good and I think my results were even ok too, but after 6 months on 200mcg my hair started to fall out and I was a bit hyper. Yes I agree I think I should be a bit higher than 150mcg, perhaps 160mcg and then get tested again in 6 weeks. Yes it is very hard to get the dosage correct. Thank you for your reply and the information. 🙂