I am very familiar with the reaction of GPs & labs to a TSH of less than 1.00.
Does anybody on here have an opinion about a TSH that is too low?
My TSH has been less than 1.0 for a couple of years on 2 grains of NDT.
I am happy with my blood levels,but should I be trying to raise my TSH to not less than 1.0 for any reason?
After 16 years on thyroxine followed by 2 years on T3,
I am the best I have been after 2 years on NDT,with a TSH below 1.00
Very happy to hear any & all opinions
Naomi8
You are on NDT. When on NDT or T3 then TSH tends to be low, often suppressed, it's just what T3 does. It's the hormone levels that are important - FT4 abnd FT3, and the FT3 is the most important one. Did you also have these tested?
Are you self supplementing with NDT?
Is your GP doing the thyroid function test?
I am self-supplementing.My FT3 & FT4 are good.I do not like my FT3 to go over-range.
I had my bloods done by NHS & Medichecks.I am in the process of changing practise because My GP said he cannot monitor me unless I go back on thyroxine-only.He ordered a blood test that showed FT4 & THS only.He told me I was mad to self medicate.
Naomi8
To be honest, if you are self medicating and self testing, and your GP says he wont monitor you unless you go back on thyroxine, then accept what he says and do your own thing. Tell him that you are happy for him to have nothing to do with your thyroid, that you have found what suits you and that you are well and that you will continue to monitor your levels yourself.
This says it all:
I am the best I have been after 2 years on NDT,with a TSH below 1.00
You may know from reading the forum that when optimally medicated on NDT or T3 then TSH is likely to be suppressed. If your FT3 is within range then you are not overmedicated.
Although he is retiring sometime over the next year,I have applied to change to a better practise,as he is head of this practise.
I pretended I was willing to go back to thyroxine so he would issue me with a prescription that I can take to my new practise,where I intend to lie,rather than risk a repeat of the fiasco caused by my honesty.I would prefer to be open about my self-medication but I can't risk it.
I am glad to have the reassurance that my TSH( below 1 but without a zero after the decimal point )is OK.Many thanks
Just to put it into perspective, I have been diagnosed/treated for hypothyroidism since 1975 and have been keeping a record of my results since 1995, was on just Levo until 2001, had 2 years on NDT and/or T3, went back onto Levo late 2002, then added T3 to Levo late 2015.
I have 58 thyroid test results on a spreadsheet covering 1995 to present day. Out of all those tests, my TSH did not have a zero after the decimal point on only 6 occasions.
Depending on how low the equipment measures, between GP, Medichecks and Blue Horizon, the results say one of the following (apart from those 6 occasions):
<0.01
<0.02
<0.005
0.01
0.007
This one is an absolute cracker. The week before Christmas 2002 I saw an endo, he'd been reducing my Levo to raise my TSH, disregarding the FT4 and FT3 results of course:
TSH: 0.4 (0.27-4.20) - Eureka! He'd managed to get my TSH into range.
FT4: 15.6 (11.8-24.6) = 29.69%
FT3: 2.8 (2.8-7.1) = 0.00%
As you can imagine, I was very, very ill. Did the endo care? Not one jot. That was the third time I'd seen him in 6 months and that was when I ditched him (with the blessing of my then GP who disagreed with him).
I'm not dead yet from my suppressed TSH (nor do I have osteoporosis), I think I would be if I'd stayed with that endo.
Thank you so much,that is so helpful.I heard today that I have been accepted at the new GP practise I applied for.
I now have to decide whether to pretend I am taking the thyroxine my GP prescribed,when I agreed to go back on it.Despite telling him I had taken 125mcgs for 16 years,he wanted to start me off on 50mcgs,eventually deciding on 100mcgs.So my annual test would not correlate as I will actually be taking 2grains of NDT.
I think I will have to tell my new GPs that I self-medicate & do not want their help re my thyroid,& attempt to avoid the subject for as long as possible,as much as possible.
Agree totally with what Scrumbler says. It is an argument many of us have had with medics.
As long as you feel well, and Ft3 is within top of range and all four vitamins optimal your fine
TSH isn’t suppressed at 1
Many people on NDT or Levo plus T3 have TSH at levels around 0.009 or lower
My TSH is below 1 but does not have a zero after the decimal point.
The normal range starts at somewhere between 0.25 and 0.45 depending on lab. Since GPs don't do anything until your TSH is double the top of the range, ask him why he cares when it hasn't reached half the bottom of the range?
Important to test vitamin D, folate, ferritin and B12 at least annually
Will repeat these in the autumn.I bought a vitamin D test for husband.He was complaining of rapid onset of painful,stiff knees.He was deficient!Now on a loading dose of D3 with K2
Many thanks Scrumbler
The following is by an expert on hormones:
"Dear Thyroid Patients: If you have thyroid gland failure--primary hypothyroidism--your doctor is giving you a dose of levothyroxine that normalizes your thyroid stimulating hormone (TSH) level. Abundant research shows that this practice usually does not restore euthyroidism--sufficient T3 effect in all tissues of the body. It fails particularly badly in persons who have had their thyroid gland removed. TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy.
The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of inactive levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose. They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy.
In all cases, your physician must treat you according to your signs and symptoms first, and the free T4 and free T3 levels second.
Supressed TSH
TSH tyranny
Suppressed TSH
Hand surgery cancelled due to supressed TSH on liothyronine
