What could be going on?

I have now got all the results I have ever had done on my thyroid. They are "all over the shop" as we say in this neck of the woods, and I was wondering if anyone knew why they would be like this, please.

I have another visit to GP next friday, so would like to be armed with some insight.

1997 20th Jan - TSH = 1.29

1997 10th Oct - TSH = 0.08; T4 = 12

1999 29th Jun - TSH = 1.01

2005 16th Aug - TSH = 1.38

2006 21th Jun - TSH = 1.76

2007 9th Mar - TSH = 2.58

2008 2nd Jan - TSH = 2.5

2008 10th Sept - TSH = 3.1; T4 = 11.5

2009 17th Apr - TSH = 2.7

2013 5th April - TSH = 1.3

2014 26th March TSH = 3.1; T4 = 12.8; T3 = 4.8; Antibodies >(less than) 5

It all looks a bit up and down to me.

I was diagnosed with fibromyalgia in 2008, as up till then all the Thyroid results had been "normal", and I knew no better, so in a way I encouraged the GP to go down that route. The local hospital rheumatologist would have known no better when I was referred to him, as he works for the same trust as where most of the lab value ranges have been agreed on, so he would have seen "normal" as well on my records.

In 2008 I was sent to an endo who wouldn't give me a T3 dispite T4 being on the lower end. This was most likely because my TSH was in the "normal" range again, and he told me to go away and accept the diagnosis of Fibromyalgia.

Am I right in thinking my T4 is a a treatable level?. I ask this as a new question, rather than at the end of my previous thread, as I want to make a printout of this thread to show the GP.

Thanx XXGlenys

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  • By the looks of that, your thyroid's been struggling since at least 2007. Though it may have been struggling because of any of (or all of) low Vit B12, low Vit D and/or low ferritin. Don't suppose those have ever been tested?

    And have you ever been on any thyroid meds? Any levothyroxine?

  • Hi Lily :-) Thanx.

    I had very low VitD this time last year. I am now on supplements, but had another test 2 days ago (will be interested to see if they have worked) When I asked the GP last year how long I could have been low - I was worried as I have gone through the menopause last year - she replied that they only do tests if they think there is any concern. I replied that if I hadn't asked for that VitD test personally, I believed it wouldn't have been done at all.

    ViaminB12 has always been a worry (it is believed to help fibromyalgia) and I have been on high dose supplements around 5 years now. Low and behold however, anther GP said my B12 blood levels were too high and couldn't work out why I would want to take them....mmmmm and asked me to reduce my dose (I am still taking those at half the dose). Looking at my blood count, I have always been on the OK side of normal.

    So looking at that, it could have been the VitD. I have always had a high cholesterol level, right back into my 20s, when I was at a normal weight, and it was around then when I started having the fatigue and pains, and started to slow down (I am 50 now).

    I have never been offered Thyroxine, but am going to raise this with the GP, as my T4 has stayed around the same for many years, so it hopefully will be easier to monitor any doses, maybe? That is of course if I can have it.

    Thanks again Lily, that has made me think, and any more feedback would be welcome folks :-)

    XG

  • I would also be asking for antibody test. Your cholesterol levels are a sign of hypo thyroid. They tested cholesterol in the past to indicate hypo. Mine went down once on levo. My TSH was all over the place and I also felt very unwell end of last year, so I asked for antibody which came back high. Managed to reduce by going gluten free.

  • Hi Crimple - had one lot done, and they were OK, but need the other set doing.

  • oh these doctors who rely on TSH its insane .............Most basic biochemistry is Thyroid Stimulating hormone is produced by the Pituarity to flog a failing thyroid into producing T4 and T3 and also T2 T12 and calcitonin

    When a patient is given Levothyroxine/t4 to supplement /replace deficient thyroid hormones the pituarity feedback loop shuts down ergo v low or undetechtable TSH

    a Free t4 of 11 or 12 is down at the bottom of the range when it should be nearer the top at around 19 or 20

    you need to post the reference ranges the labs are using but never never never allow them to just rely on TSH because you might also have Central /2ndary Hypothyroid where the piturity is permanatly damaged and cant produce TSH anyway

    Fibromyalgia is quite simply incorrectly treated Hypothyroid see the work of Dr Lowe on the web

    Most patients in your situation do much better on T3 or NDT

    You do also need to ensure ferritin , folate , b12, vit d3 , magnesium are all in the middle of their ranges ( not just in the range ) in order to acheive optimum health

  • Hi Reallyfedup.

    I was just looking at the earlier results from 1997, and because my TSH AND T4 were low, I read that was due to ptuitary problems?

    The thing is, I could have had tests from earlier in my life as I started to slow down well before then. I am getting my hospital records soon, so will see.

    I have read Dr Lowes work, and it opened my eyes, as before I saw what my "normal" thyroid results have been, I thought I may have had PBC (as my mum died of that).

    When I got my GP notes to look at personally, I could look at all the results in my own time, and Dr Lowe and Thyroid UK popped up.

    (Luckily my Liver tests were OK, but by then I had got a "reputation" with the GPs, as I kept on at them about AMA negative PBC. I had already got "depressive disorder" plastered all over my notes because I am on amitriptyline, so you can understand the GPs thinking I was going hyperchondriac!)

    I am on B12, D3 and Mg Citrate supplements at the moment, but have been on Amitriptyline and lansoprazole for over 10 years now, and am on my 4th attempt with Fluoxetine. I know it would be a panacea for one thyroid drug to take away all the tiredness and pain, but it seems the only thing, yet the most obvious thing, that I haven't tried.

  • I think it's a travesty that they somehow make depression a cause of hypochondria! Depression is an illness, granted it can also be a symptom of hypo, but it exists in isolation too. However, that does not necessarily mean you are imagining physical symptoms. I suffered from depression due to child abuse, but my thyroid symptoms are no less real because of that! I hope you get someone to take you seriously Glenys xxx

  • Thanks Harry :-)

  • Hi Gleny's -so sorry to hear that the docs has left your struggling for so long. Dr Lowe's work certainly had strong success rate of treating Fibromalgia as a metabolic disorder -that often involved poor thyroid function but also other elements such as adrenals needing support. I suspect you will need to find yourself a private doc to look at this -the NHS are very rigid and the TSH rules.....in your case even though your FT4 is low the GP is unlikely to budge until your TSH goes over threshold -the threshold varies area to area. Thyroid UK have a list of recognized doctors that you might want to check out.

  • Hi Waveylines, thanks.

    Yes I think it has got to that stage now, as I visited my GP yesterday,and the best she could do was refer me to the "Lipid Clinic" which is something new. She said it was up to them to decide whether my chronic high cholesterol was anything to do with my low(ish) but "normal" T4.

    She was the first GP to take some of my internet finds on the subject though, (including a printout of some of this thread) which was good, and has said I can send her more bits which I have found. Non of this is going to be moving fast enough for my employers though (NHS, would you believe?....) and I am on a final stage "warning" with them, after working for them for 24 years!

    I told the GP about my pain at night, and she just said that is in keeping with Fibromyalgia.

    I have a list of private doctors from Thyroid UK, and as soon as I can afford to see one, I shall make an appt.

    It's a bit of a pig, really, but thanks for the help everyone, I don't know where I would have been without it :-)

    Huggles XG

  • Hi Glenys, I'm not on a warning yet, but I work for the NHS too and have been off almost 4 months. I've only been able to go back this week due to self medicating, and although I obviously want to be better for myself, it drives me mad that i have had to spend my NHS salary on stuff the NHS should be doing for me!

  • I know harry, it is ridiculous. I was only at a stage one, then had ONE day off, which took me to a stage 2, then the other week another ONE day off - now stage three!!

    If I could only get a referral to the pain clinic, which is literally a stonesthrow from my department, I am sure we would get to the bottom of it, at least I would be on my way to getting rid of my night pains without poisoning my liver too much with all the painkillers!

    Sad thing is that when I first asked about pain clinic the GP I approached said it was shut. I told her it wasn't, and then went and got her the name of someone to refer me to, When I took it in, she changed her mind and said, lets try some other things first "there is nothing they can do, that we can't".

    So then I had to tell her about Duloxetine, because I wasn't getting put on anything else (I have been on amitripyline for 13 years at this point), and she thought it was a good idea, but it turned out it made me really tired and painful, and I weaned myself off it onto Fluoxetine.

    She then said, lets see how you settle on that, before I refer you to the pain clinic. So guess who I will be making an appt to see!!

    As you know, Harry, the HP dept will be screaming down my neck on this one, and I can't promise to "get better soon".

    Most days I am fine as I do a 3 day week, and even though I feel worn out most of the day, I enjoy being there, and Occi health have even told my manager that it is therapeutic to keep me in there (I am a medical Photographer).

    Anyway I hope all goes OK for you too, and you don't get caught in a slippery slide UP the Bradford index!

    XG

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