New test results still look odd, any help would be appreciated.

[blackqueen65]

I recently posted my test results which seemed odd and have just had a retest done after 1 month on a reduced dose.

I was on 125mcg of Levothyroxine and my TSH was 0.02( 0.35 - 5.00) FreeT4 16.8 (11 - 23) FreeT3 4.2 (3.9 - 6.8).

Doctor reduced my dose to 100mcg as my TSH is suppressed despite me pointing out that my FT4 and Ft3 were at the lower end of normal. Anyhow I reduced the dose for a month and also altered the timing of my HRT tablets to late afternoon which I previously took at the same time as the Levo in case this was causing a problem but my new results are

TSH 0.04, FT4 15.4 and FT3 4.1.

The doctors receptionist phoned today to say the doctor wants me to stay on this dose and re test again in May. I made an appointment as I have a lot of symptoms coming back and suspect I will just get worse the longer I'm on the reduced dose but I'm not sure what other thyroid tests to ask for and what might be causing the T4 and T3 to be low with a suppressed TSH. I know in someone not on medication it could signify a pituitary problem but I'm not sure if that's the case for someone on thyroxine? My doctor is only interested in the TSH coming up and doesn't seem to think the FT4 an FT3 being low is odd. I just wonder if anyone has any ideas on what the problem could be or what I can say to the doctor to justify asking the dose to be put back up?

[shaws]

Dr Toft, ex of the British Thyroid Association says it is o.k. to have a suppressed TSH if it makes you feel better or even the addition of T3 to a reduced T4. If you would like to send a copy of the article which was in Pulse online, email [e-mail] and send your GP a copy before your appointment, so that he has time to absorb it.

This is a link but some of the links within may not work and if you cursor to the question dated July 15, 2006, it will give you information.

web.archive.org/web/2010122...

[blackqueen65]

Thanks for that Shaws I will ask Louise for the article.

[greygoose]

They don't look odd at all, to me, you're just on too low a dose. Neither of your frees are even mid-range, and most people need them to be at the top of the range to feel well.

Never mind what the TSH is. I've said it a thousand times before and I'll say it again: TSH is totally irrelevant, and a doctor that doses by TSH levels is ignorant about thyroid.

Once you are on thyroid hormone replacement treatment, the loop between the thyroid and the pituitary, that causes it to produce TSH, is broken, and the TSH level bears absolutely no resemblance to actual thyroid status.

And it's not going to do you any harm having a suppressed TSH, as he would appear to think. TSH - Thyroid Stimulating Hormone - and that's all it does, it stimulates the thyroid. The body does not use it for anything else. You are not hyper and you are not going to have a heart attack because it is suppressed.

And that's it: your dose is too low. I don't know how you are going to convince your doctor of this, but that is the state of affairs according to your last tests - although the one before wasn't brilliant, either!

Hugs, Grey

[blackqueen65]

Thanks Grey, I did think the TSH wasn't too relevant once on levothyroxine but previously it has fluctuated between 0.01 and 3.2 but the T4 has always gone high or low accordingly, never both low. I just wanted to confirm that there wasn't some other reason for this to happen. I'll tell the doctor I need to go back up to my previous dose and if I still don't feel well I'll ask to up it further. If she won't agree I'll ask to see an Endo. I'm fed up of feeling ill, I've been really unwell for around 18 months and told it's depression and chronic Fatigue. I refuse to keep playing along with the doctor's who just want to treat by numbers on a sheet instead of patient symptoms. I can't believe there are so many people in the same situation and doctors just won't even consider the current methods aren't working.

Regards Shaz

[nostoneunturned in reply to blackqueen65]

Shaz, perhaps your Gp needs to read these papers on the increased need for thyroxine in hypothyroid women during estrogen therapy:

nejm.org/doi/full/10.1056/N...

The first paragraph of the Discussion summarises matters: women with healthy thyroids can vary their thyroxine production to cope with the extra burden of increased oestrogen but hypothyroid women, dependent on a fixed amount of thyroid hormone cannot cope with increased oestrogen.

And another reference which advocates the use of transdermal oestrogen therapy, as it does not affect the thyroid binding globulin (TBG) levels, therefore might not be expected to alter thyroid function, all explained in:

ncbi.nlm.nih.gov/pubmed/151...

Yes you do need to go back up to your former dose and as Greygoose says, you need more. I cannot find so far anything to substantiate just altering the timing of the respective doses, the oestrogen is in the body full-time, so just altering T4/HRT intake times will do nothing as the chemistry in the body is continuously altered by the HRT

Perhaps these two important papers will convince GP you need more, not less.

[VanessaB]

These read more or less the same as mine doctor but my Tsh was 1.73 and Ft4 was 14.6 doctor agreed to put my dosage up by 25mcg my Tsh was then 0.12 but Ft4 was still only 14.7 he wanted to reduce It but managed to persuade him to stay on this.The last blood test I had I went early in the morning and my Tsh was 0.7 so he has agreed to keep it at 125mcg but like you I still feel rubbis

Pushing for an increase when I've only just managed to stay on my current dose seems improbable.We're all slaves to the numbers doesn't matter my joints ache but I don't have arthritis or rheumatism,my eyes are dry,my hair looks like the bloke off top gear,I'm permenantly tired and spend my life trying to find an treatment for an illness I don't have.

Try and get your dose upped again maybe on the agreement he'll test in 6 weeks or something.

Best of luck

Vanessa x

[blackqueen65]

Thanks nostoneunturned I agree about the estrogen but unfortunately the patches didn't work for me, I tried them first and reluctantly went onto low dose combined tablets.

Hi Vanessa, sorry your feeling so bad as well, I honestly didn't realise how many people this was affecting till I came onto this forum, it's sad that so many people are being left to try and sort the problem out on their own and having to fight constantly to get the doctors to listen. I have just been reading about the reverse T3 problem and I think that might be the answer. I had read a little bit on it and assumed you would have a high T4 and low T3, not sure why, but having read up on it more it seems to make the most sense. I am going to ask the doctor to order the reverse T3 test, not expecting her to but will try anyway, and if not I'll get it done privately. I'll post back the results as if it's high that may be an argument to try some T3 added to the T4. Here's the link if you want to have a read yourself.

naturalendocrinesolutions.c...

Best wishes

Shaz

[nostoneunturned in reply to blackqueen65]

It is a great pity that the patches do not work for you. Surely the GP would consider the information in the two links as useful? GPs are after all not speciaists while they are expected to be experts in many illnesses, but they simply cannot keep up with everything relevant. On the other hand some have such delicate egos that any patient displaying an interest in their own health is readily branded as having "health anxiety".

Thanks for the link, very interesting.

[Heloise]

I had results similar to yours recently and had asked for a reverse T3 test since I felt unwell. Everything fell in the normal range but FT3 and FT4 were barely over the minimum and the reverse T3 was at the high end of the range. This makes me think I am not getting a enough of the usable, active FT3 because it's becoming reverse instead. Adrenal disfunction or low ferritin might be one of the problems that create more reverse T3. Of course, this may not be your problem at all.