What should optimum TSH level be?

I am new on here and am rather confused as to what my TSH should actually be. My latest test result on 13th February 2013 was:

Serum TSH level - (FJA1622) was 0.33 mu/L where the range is 0.30 - 6.00 mu/L. Have been told that level is normal, and no action is needed.

Blood test was taken approx 3 hours after taking my daily dose of 175 mcg of levothyroxine.

I had a total thyroidectomy in 2003 due to a multi-nodular goitre, saw an Endocrinologist once shortly after my op, and have not seen once since.

Is this level of 0.33 ok or do I need to take action? Since my op, I can honestly say that I have never felt 100%. I am:

Unable to lose weight.

Shattered most of the time

Have depression and anxiety

Hot flushes have gone worse

High blood pressure gone worse....today nurse took and is 170/107 so have to go on a 24hr monitor.

Have leg cramps

High cholesterol

Breathlessness

Very dry skin

And the list goes on.

As I am really in the dark and confused about whether or not all my problems are hypothyroidism related, any help/advice from other members is very much appreciated.

21 Replies

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  • This is a link from Dr Lowe (RIP) who was an advisor to Thyroiduk.org.

    I am not medically qualified but all your symptoms appear to thyroid gland related.

    I have given you some links and at the top of the page there are topics which may interest you.

    I did not have a thyroid gland removal and I felt absolutely dreadful on levothyroxine. I am fine now I have changed to Natural Thyroid Hormone but I had to try several before I found one that suited me. Many people do fine on levothyroxine but some are poor converters. Levo (T4) should convert to sufficient T3 to make people feel an improvement.

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

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

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

    thyroidscience.com/

    I was lucky my Endo allowed me to take some T3 to a reduced T4 and I immediately felt an improvement but, as said above, I have now moved on.

    My TSH is 0.01. Before the TSH came into use as a diagnosis people were medicated according to their clinical symptoms and the dose increased until they were well and symptoms improved. This would have been NDT as levo was only introduced I believe about the 1960's.

  • Thanks for your reply, and the links. Looks like I have plenty of reading to do, then I will have plenty of info to take to my doctor. What I cannot understand is why doctors do not sort your thyroid level out correctly, so as to avoid all other health problems. The cost of prescribing the correct thyroid medication must surely be more cost effective for the NHS, instead of prescribing other medications to treat hypo symptoms such as depression, high cholesterol, high blood pressure, etc.

  • There is no such thing as an optimal TSH level once your thyroid has gone. TSH stands for Thyroid Stimulating Hormone. And that's all it does. It's a pituitary hormone and it stimulates your thyroid. If you don't have a thyroid you have nothing to stimulate so they should not be testing it, they should be testing FT4 and FT3, the actual thyroid hormones.

    Even if you have a thyroid, once you start thyroid hormone replacement, the link to the pituitary is broken and the TSH is irrelevant. That doctors in the UK use it to dose patients by is nothing short of scandlous.

    Also, they are terrified of suppressed TSH, they think all sorts of terrible things are going to happen to you. They aren't. If your TSH is suppressed due to taking thyroid hormone replacement, it's... irrelevant.

    Don't worry about it, but don't let your doctor reduce your dose because of it, if you feel well on that dose.

    Hugs, Grey

  • I have been seeing dr skinner my dosage of thyroxine is now 175 mcg and 20mcg. T3. And an feeling much better now . My bloods just received back abd they say T4. 21.1 abd. Tsh below 0.014. They are saying my tsh is to low and want to reduce thyroxine I am not going to allow them to do this . I see dr skinner again in May. My Tsh used to be 8.4 and my tsh 0.018 and I felt rubbish .

  • Good for you! Stick to your guns!!!

  • Thanks.......I'm going to ask my doctor to test for FT4 and FT3, and to also refer me to an Endocrinologist because I don't feel at all well.

  • i know you did this 2 months ago but i just saw it have only joint site a few weeks ago ,i had a total thyroidectomy and my gp only does tsh level ,as you have helped me recently,but i saw gp today and i told him they should test FT4 and FT3 ,and he asked me where did i get my qualifations from we had words and he told me that he could not do anything as no matter what he said i was not gonna listen,he said the only test is tsh ,could you please tell me where you had this imfo from so i can print it out and give it to him,i wish i had seen this before i went,

  • Your doctor is a... very bad word! He's arguing with you to cover his ignorance. There is information about FT4 and FT3 tests ALL OVER the net and in thousands of books on the subject in book shops. If he doesn't know about them then he shouldn't be doing that job!

    hormonerestoration.com/Docs...

    Try this site for a start. But you will find the information on the TUK site, on Mary Shomon's about.com site and on many many more. It is not ground-breaking news. These tests have been around for as long as the TSH test.

    I did have a doctor tell me once that the FT3 test didn't exist. I said but you did it last time. He looked blank for a minute then said ah yes, but only an expert can interpret it. I said I can interpret it. A few more seconds of hesitation and then he wrote T3 on the page. When I got home I added the F myself. He just didn't want to do it!!! Ignorance is rife.

    Tell your doctor that the only point of TSH is to stimulate the thyroid (Thyroid Stimulating Hormone) and that as you don't have a thyroid to stimulate the link to the pituitary is broken and the TSH test is useless. Sorry I don't have a link to that, it's just one of the crumbs you pick up as you go along. Well, patients do. Doctors apparently are crumb-proof.

    I'm sorry you have a cretin for a doctor, Grey

  • Thanks for that ,there are about 10 gps in that practice,all with the same idea ,as long as you are in tsh range you should be ok.if i had not joined this site i dont think i would of had the courage to have said anything ,and i cannot thank you all enough for that,i am gonna change gp surgery.i do see an endo at the hos about every 6 mths (if appt dont get cancelled )he will consider how you feel ,but i get meds review with gp and then they will change it,i have refused if its been close to a endo appt,by the way the gp looked about 12

  • Oh, God save us from 12 year-old GPs! They are victims of the new way of teaching at med school that excludes symptoms and just tells them about blood tests and pills. They are not real doctors!!!

    Don't ever let them change your dose just on the basis of the TSH. You do have the right to refuse. They are supposed to work with you, not against you.

    Lots of luck with finding a new GP, Grey

  • thanks you ve been a big help

  • I'm still banging my head against a brick wall. Saw my gp and asked for FT4 & FT3 tests, but was told that because my TSH was ok, there was no need for these tests. GP did reluctantly agree to do another TSH & FT4, but would not do FT3.

    When I went for results:

    Serum TSH level (IC1622) 0.21 (0.3 - 0.6mu/L

    may require reduction to 150 mcg

    Serum free T4 level (IC1622) 15.3 pmol/L (10.4 - 24.50 pmol/L

    Normal - no action

    I asked her how did she know that my body was converting levo properly. Told me it was because of the above results. I said you need to do a FT3 and could you tell me if a FT3 has ever been done during the past 10 years since my total thyroidectomy. She could only comment that it had not been done in the past 2 years since moving areas and registering with this surgery. Surely they have access to my notes from previous doctors??

    She still maintained that FT3 test is not necessary, and I asked her about some of my symptoms and also told her that when I wear dark trousers, after a few hours, the inside of the trousers are nearly white from dry skin despite lathering E45 cream on legs several times a day and before putting trousers on......she avoided answering and repeated FT3 not necessary, and that my levo should really be reduced, but I refused to agree to this. She would not refer me to an endocrinologist because she said my test results did not warrant it. I was given a further blood pressure pill (having problems finding an additional blood pressure pill that I can tolerate) and told to come back in 3 weeks. I said that when I return, I will bring my long list of symtoms and further information as to why I am positive that my thyroid levels are not correct.

    I have to stick with badgering my gp, because of current circumstances I am unfortunately unable to go privately. So the battle goes on........

  • Agreed that FT4 and, if achievable, FT3 should be done.

    It is probably sensible not to take levothyroxine in the hours before a blood draw. Even though I take mine at bed-time, I skip that, get blood drawn as early as possible, and take the levothyroxine straight after.

    It should not have a very significant effect on TSH - but maybe enough for them to question.

    And I would try to persuade your GP to test you for:

    vitamin B12

    folates

    iron/ferritin

    vitamin D

    All could be contributing in considerable measure to your problems.

    Rod

  • The blood test was unexpected, and usually I do not take my dose of levothyroxine until afterwards.

    You mention that you take your levo at night. I was told to take mine in a morning. Does taking it at night make a difference?

    I will add the other tests onto my list that I am going to ask the doctor to do.......well hope that he will agree to do them all.

  • Taking at bed-time makes a helpful difference for some. Have a look at Polls on menu at top.

  • Hi I always think that the most important tests are TSH , T4 and Free T3. I have to have my TSH left very low as I need the T4 and Free T3 to be ok to feel well. My FT3 needs to be near the top of range. I originally had treatment because my Ft 3 was very low. I have always had a low TSH. It depends how you feel but only a very good endo will normally give you this sort of care. It is usually all numbers!

    Jackie

    To reply to anyone in particular click on " reply to this"" or we will not know.

  • Hopefully when I ask him, the doctor will refer me to an endocrinologist. Any idea how I find out if there are any good ones in my health authority?

  • I have just replied but not sure if I clicked, so easy to forget. if you have not had my reply look on the main site.

    Jackie

  • Hi Essential to go by your choice , not the GP`s. Do all the research first. If you go on the main TUK sit there is a heading Hospitals ,so some there.Louise TUK has a lists of a few, but cannot remember her exact e mail, she often posts. Although most of hers are private doctors or private endos. I see a private endo. There are a few good NHS endos but it does need a careful choice! If that no good you can post a question, no names but any one know a good endo, NHS, in a specific area?. If any one does they will send you a PM ( click on name) as not allowed names on the site.Or if II want to find a new consultant, I always look at the hospitals lists, then look at the local private hospitals , some times quite a bit of info there. Then if you put the docs name into the WEB, most have a CV on there. Failing that you can try the persons secretary and Fish, of course you cannot ask if the doc is nice but methods of treatment etc , also usually if secretary nice a good chance the consultant is and visa versa.

    I hope that helps.

    Best wishes,

    Jackie

  • Hi Jackie!

    Private GPs - NHS Endos. :-)

    louise.warvill@thyroiduk.org (feel free to copy and paste my email) xxx

    Louise

    xxx

  • Thanks , I guessed you would notice.

    Jackie xx

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