Tsh level

[LMor]

At what tsh level were you diagnosed?

[SeasideSusie Remembering]

No idea, wasn't told, but that was over 40 years ago and it took the doctor two years to even think of testing thyroid.

[LMor in reply to SeasideSusie]

My tsh is above range but doctors are refusing to diagnose me and ignoring all the horrendous symptoms I'm having. What symptoms do you have?

[SeasideSusie Remembering in reply to LMor]

I've been diagnosed and treated for over 40 years, still not well because of doctors' poor understanding of Hypothyroidism, and it's led to other problems, so my present symptoms aren't really relevant in this context.

Here is ThyroidUK's list of signs and symptoms of Hypothyroidism thyroiduk.org.uk/tuk/about_...

NHS generally wait until TSH reaches 10 before diagnosing Hypothyroidism whereas it only has to be 3 in some countries. Sometimes if high thyroid antibodies are present then treatment may be given before TSH reaches 10.

Why don't you post your latest thyroid test results and some background information and members will comment. Tests always advised here are

TSH

FT4

FT3

Thyroid antibodies (TPO and TG)

And because they're so important for thyroid hormone to work, and because deficiencies can lead to similar symptoms

Vit D

B12

Folate

Ferritin

And if done

Full blood count

Iron panel

Haemoglobin

[LMor in reply to SeasideSusie]

Thanks for the response. I did ask for a copy of my bloods (that was a nightmare in itself). My tsh level is 4.96 & my t4 is 11.8. I asked the doctor to test my t3 and thyroid antibodies and they refused. They also won't accept that my tsh is anything although I am experiencing a huge amount of symptoms. My serum ferritin level is 50ug/L (which is ok I think) My serum C reactive protein is 3 mg/L

[SeasideSusie Remembering in reply to LMor]

LMor - ferritin needs to be at least 70 for thyroid hormone to work (our own or replacement), half way through range is recommended. So your ferritin at 50 isn't good enough and could do with boosting. Eating liver regularly, maximum 200g per week, and eating iron rich foods can help there apjcn.nhri.org.tw/server/in...

TSH is far too high - you've not put the ranges for your results. Is your TSH over range? Is your FT4 below range?

Even if doctors request FT3 it's the lab that decide whether or not they're done, but I see no reason not to test for antibodies although NHS only do TPO when they do agree to test. You can be negative for TPO but positive for TG. Many members opt for private tests to get everything done in my list above.

CRP is probably within range, most ranges go up to 5. It is an inflammation marker and will be raised if inflammation or infection is present.

If you want all the other tests done, do a fingerprick test from Blue Horizon or Medichecks, their thyroid bundles include all thyroid tests plus vitamins and minerals.

bluehorizonmedicals.co.uk/t...

medichecks.com/thyroid-func...

[LMor in reply to SeasideSusie]

Range for for tsh should be between 0.5 - 4

[SeasideSusie Remembering in reply to LMor]

Is that the range from the lab that did your test? If so you're over range for TSH. What about the range for FT4?

[LMor in reply to SeasideSusie]

Yes that's the lab range and my t4 was the lower side but in range

[LMor in reply to SeasideSusie]

The doctors just said they will re test in three months and refuse to do an antibody test. I have been unwell for around three years. Going back and forth to the doctors with different things wrong. Last time they did the thyroid test and that was the result. Everything I have been to the doctors with indicates a thyroid problem (which I only realise now) I just wish they would treat me seriously as some days I struggle to even move

[TimD250172]

Mine was over 50 and I wasn't symptomatic. Only had a routine checkup and happen to mention family history of thyroid issue so they checked it.

Haven't been 100% well since being put on Levo 18 months ago.

[SlowDragon Administrator]

My TSH was only 8.

I was lucky to have a good GP who then tested Thyroid antibodies, which were so high they were off the scale.

[Greybeard]

My GP practice had been monitoring my Tsh and T4 for 7 years without telling me. I had been complaining about all the usual symptoms.When it reach 6.1 I was finally told but refused treatment till it reach 10. Thanks to this forum I went back armed with enough information and a double dose of righteous indignation to make them reconsider treatment. Now after going from 25mcg to 50mcg they are getting panicked and are sending me to see an endo. These people are some of the brightest and best we have to offer, god help us all.

[greygoose]

If I remember rightly - and there's no guarantee of that! I was diagnosed with Hypo Hashi's when my TSH was around 14, and my Tg antibodies in their thousands. But, I'd been having symptoms since I was a child, and nobody thought to test me, just told me to 'eat less and exercise more', and to learn to live with my symptoms. It was such a relief to finally be vindicated for about 50 years of being on and off, fat, slow and balding!

[Framboise]

I was diagnosed by Dr Skinner when my TSH was 0.45 and had been in that region for the previous 11 years. My GP had tested me regularly and because of the lowness of the TSH, my FT4 and FT3 had also been checked each time and they'd been fluctuating between bottom of the range and middle of range for most of those years without the TSH reacting very much. I had many symptoms of under-active thyroid but because my TSH was so low, despite the diagnosis and getting so much better on treatment, no-one in the NHS has ever been willing to treat me. I now see a local private endocrinologist, who also works on the NHS, who is prescribing for me and who has said my original TSH was irrelevant and that I should have been diagnosed on the other levels.

Looking at your results your TSH is high and FT4 almost certainly low in the range at 11.8. Ferritin should be over 75 I think. If your GP isn't willing to help you could do the private tests which Seaside Susie has mentioned, post them here for comment and try to persuade your GP to give you at least a trial of treatment. What area are you in?

[LMor in reply to Framboise]

I'm in birmingham. Thank you for your response. It means a lot to hear I'm not going mad.

Every day I feel like I've been run over by a truck. I got acne three years ago after having beautiful skin all my life. My joints hurt, my hair keeps falling out. Since December I've had dreadful heartburn and nausea, I get migraines with and without aura. Constant uti's (although I've had kidney stones) My hands are always cold and then suddenly start to burn, I've developed beau lines on my finger nails. There are many other issues I have as well. Oh and the brain fog is very scary lol. I can't always think straight and people are starting to notice now

[Framboise in reply to LMor]

I really feel for you, I had some of those symptoms before I was diagnosed and life was very difficult. I don't know any good endos in your area but you could start a new thread saying where you are and asking people to send you a private message if they can recommend anyone there. I'm fairly sure that a couple of members see someone there.

Definitely get the private tests done if you're able to and see what they show, then post the results here. Meanwhile I hope someone can suggest how to persuade your GP to help even if he/she thinks it's just a trial treatment After years of being ill then no-one being prepared to treat me after Dr Skinner died, my GP recently told me that he knows the TSH test isn't the right one for diagnosis and he knows some people need more than just levo, but for all those years I was left thinking that perhaps I was mistaken, that perhaps I didn't really have a thyroid problem and should just pull myself together

[Print1972]

I was diagnosed at 228. That's not a typo. I was told by another sufferer, that my level was incredibly high, and to check again with the doctor. I did and they confirmed it. My doctor said it was the highest they'd encountered.

[LMor in reply to Print1972]

Wow you must have been very poorly i hope the medication is helping you.

[helvella Administrator]

High TSH test results can sometimes be caused by, or at least have a contribution from, having antibodies to TSH itself. An antibody and a molecule of TSH then form something called macro-TSH. In some tests, that "looks" like lots of TSH.

Some tests are not affected by these antibodies. It is reasonable for the test to be run again at a different lab than is known to use a mechanism that is not affected by macro-TSH.

[knitormiss]

My doc was convince I was hypothyroid, but my tests for TSH were always around 2. She was literally testing me every 6-12 months, depending on when I came in... Finally, in one year, my TSH shot up from a 2 or so to a 4.4 (scale 0.358-3.740). She put me on Armour, and sent me to an Endo...who took me off the meds (after telling me if I could stop being fat, he could fix my thyroid - I fired him, needless to say)...even though I know now that it dropped my TSH back to close to 2 within 2-3 months...I just never felt better. That was somewhere in 2009-2011...

Somewhere in 2013-2014, I was back near a 5, and my doc put me on Levo. Agreed to send me to Endo (different one) for PCOS, and hypothyroid. Diagnosed IR first appointment. Endo didn't want me to switch to NDT since I'd had reasonable relief with Levo...finally after levo for years, increasing doses, then adding T3 meds, increasing doses every 6 months, he agreed to NDT... The transition was horrible...but after several weeks, started improving. Still fighting back.

Both times, in the 4.5 or so range. But my doc was watching the numbers, and every time it was that high, it had more than doubled in 6 months, so knew something was way off.

[kstain]

10 years ago I was diagnosed with hypothyroidism with a TSH of 5.50. I had to ask for my results and the doctor's office acted like no one had ever asked for their results before. They tested for nothing else. I had gone to see the doctor because my face was pretty puffy and I couldn't stay awake. I suspected a thyroid problem although I knew very little about thyroid issues. I began drinking coffee and rockstars (never had any caffeine in my life prior to this) to stay awake during the day. I also had put on about 10# and my neck looked "wide" in the mirror, but at the time had no idea the weight gain or neck thing was related to my inability to stay awake. The doctor discovered a good sized nodule as well, which stays suppressed in size with thyroid medication. My hair and skin have really been through the ringer and hasn't been normal since. I have never really felt well since then and my face still seems bloated in pictures but weight is normal. I push on though, but most days are a struggle.

[djb200]

100. I as aching all over and sleeping up to 30 hours at a time. This had been going on for a good few years, before I forced my doector to send me out for bloods. Turned out I was showing up as hypothyroid two years earlier but no-one thought to let me know.