Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: Chi chi on April 27, 2017, 02:10:35 PM
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Just wondered if anyone knew anything about TPO antibodies?
I recently had a private blood test to check my thyroid as I have almost all symptoms of hypo, just lately my hair is awful too, even hubby has mentioned it ???
Anyway my results came back
TSH 1.86 miu/L. Range 0.27-4.2
Total thyroxine (T4) 89 nmol/L. Range 59-154
Free thyroxine 12.2 pmol/L. Range 12-22
Free T3. 4.2 pmol/L. Range 3.1-6.8
Thyroglobulin antibodies. <10 iu/L. Range 0-115
TPO antibodies. 9.5 iu/L. Range 0-34
Does everyone have thyroid antibodies even without a thyroid problem? Is my result a positive or negative result?
Thanks in advance
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I think because there's a range it must mean we all have some
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What's an 'anti-body' :-\
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Chi chi, in my most recent experience I can say that without doubt the only way to properly review if you have thyroid issues is to see an endocrinologist.
It was 'thought' that I may have secondary hypothyroidism but upon seeing the Professor of Endocrinology I saw this week he said that a sustained pattern of broad symptoms plus repeat abnormal tests is the only way to diagnose accurately and that there is a lot of overlap of physical symptoms with menopause such as rapid weight gain, hair dryness and thinning and changes in mood etc.
Also, the thyroid interplays with the rest of the endocrine system so in menopause when hormone levels are fluctuating you can imagine that one set of tests is merely a 'snapshot'.
If you're really concerned and symptoms persist, be sure to see your GP and ask for a referral. This is important if you believe you do have thyroid issues as it makes balancing any HRT that bit more tricky.
Good luck! xxxx
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I used to work as an advisor for a thyroid charity. All your results are in the normal range according to the figures you have provided. We all have some antibodies within a normal range as stated and its only when the results are outside that normal range that Dr's take notice!
The nhs usually only checks TSH/T4 and free T4 so you have had a more comprehensive test done.
As all your results are in the normal range then it is presumed you are negative for a thryoid condition but you should show your results to a Dr for confirmation.
If you are in Uk then you would not be referred to endocrinologist on nhs. Even someone with thyroid condition will not be referred unless there are serious complications/issues. If you are in another country or can pay privately in uk then you may be able to get opinion of endocrinologist.
If you are peri menopause or post menopause then this could also be the cause of all your symptoms rather than your thyroid.
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I wasn't sure about referrals I must admit, Countrybumpkin. I just assumed I must admit!
Mine was a tertiary referral via my Gynaecologist as I have complex issues, so I should have checked really before I posted. So glad you've clarified this for Chi Chi. xxxx
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I have Hashimoto's thyroiditis and I have thyroid antibodies. I am on T4/T3 combination treatment.
CLKD antibodies are what the immune system uses to destroy bad things like viruses and infections. When you are immune to something you have antibodies in your blood that will fight that illness or infection
In an autoimmune illness your immune system gets it wrong and forms antibodies to your body's healthy tissue and starts to attack it (thyroid - hashimotos, pancreas - diabetes, stomach lining - pernicious anaemia, connective tissue - rheumatoid arthritis, mucous membrane - Sjogren's syndome) there are many of them.
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Thanks for the replies,
I understand I'm "within range" but am I "optimal" for me??
There was a GP at my Dr's that whenever I saw her she always commented on my neck and asked me to swallow, I never really knew why but since I've realised it's because my neck/throat looks swollen. I've always been a tired kind of person used to crash out on the sofa when I got in from school, I've always felt the cold a lot more than others too.
My hair is fine, brittle, lank, greasy and coarse, it's like baby hair but without the softness ::) I can't do a thing with it, it won't even stay backcombed.
My feet feel like they're on fire when in bed and my legs feel restless, I've developed dry itchy skin, feel like I have bruises where there are none, my face and eyes are puffy as are my hands, feet, ankles, generally my whole body feels bloated and puffy.
I'm constipated most of the time, even on holiday when everyone else gets the opposite! When I do go it always feels like theres more left! I often get a horrible taste in my mouth that lasts for days and what I can only describe as a furry tongue.
My memory has become awful, I recently typed in my car reg back to front in the car park machine, and when in new restaurants etc when I go to the toilets which I always need to do I get disoriented with all the doors and can't remember which one I came in through ( this is particularly scary for me).
One of my fingers has started to go numb quite frequently and I get ringing in my ears.
I know this may sound like I'm copying all the symptoms of hypo but they're all very real for me, not to mention the low moods, anxiety, zero libido and general lack of enthusiasm for anything. If we go out shopping, walking etc I'm totally shattered and could quite easily go to bed afterwards.
I know these symptoms could be down to anything, my thyroid results have always been in range, just!
Nobody on my mums side has had any thyroid issues but as I grew up not having anything to do with my dads side I don't know about any of his family?
Something just isn't right but it's getting the Drs etc to listen and take you seriously without putting everything down to depression and anxiety! :-\ ::)
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I cannot comment on your circumstances as I am not medically trained. the only thing that jumps out at me from my own experience is that your free T4 is only just in the reference range at 12.2 and could be too low for your own optimal health. Although your TSH is well within range that may not be optimal for you personally. When my TSH is over 1 I get hypo symptoms and my endocrinologist fine tunes my dose to keep it ticking over at just under 1 which seems the optimal level for my health. Even though it would be classed as 'normal' at a much higher level it would not be normal for me.
The GPs tend to go on the blood results whereas my endo goes on clinical symptoms and has a much more open mind on it all. I am very lucky to be under his care.
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Thanks babyjane :)
Back in July 2015 on blood tests that prof studd took my free thyroxine dropped to 11.9, in the letter to my GP he wrote that it was suggestive of hypo and would discuss it with me at next appt, he never did and since it's returned to just in range ::)
Can I ask did you have trouble getting diagnosed /listened to? What were your symptoms?
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chi chi I could have written your list of symptoms. I spent years back and forth to the GP getting treatment for them. Then my mother was taken very ill and taken to hospital. Long story short she was found to be hypothyroid. My symptoms mirrored hers. I asked my GP to please humour me and test me for thyroid problems. He did but reassured me 'it is very unlikely'. He telephoned me at 7.30 one evening to explain my results showed that I was extremely hypothyroid (TSH was 52 and haemoglobin was 6!). It took 18 months to get the levels stabilised and I had been close to needing a blood transfusion.
This was all 30 years ago and since then it has been discovered there is a strong genetic link to this problem in my mothers side of the family. I did not really stabilise properly until I was referred to the lovely endocrinologist I am still with today. I think I probably owe that man my life.
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Chi Chi I have / have had most of your symptoms, along with double vision, I too thought thyroid and I now have white dead fingers and toe/ankle/finger spasms that I can't control. I paid for a full thyroid test and have very similar results to you and the company didn't write anything about there being a problem. A neurologist strongly thought I had Myasthenia Gravis then he didn't think I did. My thoughts since are that if I have an auto immune 'something with more specific symptoms' will emerge to get me a diagnosis
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Tempest I am glad you got to see your endocrinologist and going via gyny or another consultant is probably the best way to do it - Gp's have their hands tied with endo referrals!
One thing I learned during the training for the support charity is that no one ever knows what is the normal level for anyone other than by trail and error and how the patient is feeling. They originally came up with that range by testing a set number of people with no symptoms of thyroid disease who felt well and this was the range they got from those people and its what they still use. So one person in that group cold have been at one end of range and another at the other end - its a very imprecise measurement.
Drs should not just go by blood results but also by patients symptoms and how they feel but it seems rare for them to do this.
I too noticed that the free T4 was just in the normal range as well.
Chichi one thing you could do is to discuss with your GP if they would be willing to give you the absolute minimum dose of thyroxine for 6 weeks (25mcg) and after the 6 weeks to be retested to see what your tsh etc is and also report on how your symptoms are. Some GP's are willing but most are not as they are prescribing off license and you usually have to sign a waiver if they are willing but I know someone who did this and felt much better on the tiny dose so she was able to stay on it.
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Your test is a bit different from my results, it should say either positive or negative to antibodies, I am positive, still not really sure what it means, when I asked my GP, all he said was, your thyroid has been "attacked" at some stage, he prescribed Eltroxin which I drink daily. Your TSH is nice & low, they like to keep that below 2 ideally, below 1.5. You need to remember that although your results may fall within the so called normal range, you do have to go by your symptoms as well that is really the only way to address thyroid dysfunction.
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I used to work as an advisor for a thyroid charity. All your results are in the normal range according to the figures you have provided. We all have some antibodies within a normal range as stated and its only when the results are outside that normal range that Dr's take notice!
The nhs usually only checks TSH/T4 and free T4 so you have had a more comprehensive test done.
As all your results are in the normal range then it is presumed you are negative for a thryoid condition but you should show your results to a Dr for confirmation.
If you are in Uk then you would not be referred to endocrinologist on nhs. Even someone with thyroid condition will not be referred unless there are serious complications/issues. If you are in another country or can pay privately in uk then you may be able to get opinion of endocrinologist.
If you are peri menopause or post menopause then this could also be the cause of all your symptoms rather than your thyroid.
I'm in Scotland...my Thyroid went over-active a few years ago, to the point were I was 'rattling'....my GP was convinced it was my anxiety that had come back,until he took my blood pressure and pulse, both were though the roof, my pulse was 146 at rest, he took blood and fast tracked it...in the meantime he put me on Propranolol and Carbizamole. 4 days later he phoned me and my Thyroid levels were extremely high and he was referring me to the Endo dept at Edinburgh Royal Infirmary, 2 days later I received a phone call from the Endo's secretary giving me an appointment the following week, all on the NHS !!!!
He diagnosed Graves' disease
treated with Radioactive Iodine to kill the Thyroid which put my Thyroid under active, I am now on Thyroxine.
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Hi Chi Chi, like Babyjane, I am long-term hypothyroid, on Thyroxine (T4) & Liothyronine (T3), but I am not an expert by any means. I agree with Babyjane, your free T4 does look a little low, but I think the TSH would usually be higher if your body needed the gland to produce more thyroxine. Your free T3 result shows you are converting the thyroxine into the active form the body can use & this result is the same as my last free T3 although I have to take Liothyronine to achieve a result above the bottom of the ref range.
If you are on HRT or are oestrogen-dominant in perimenopause, then I think the lowish T4 could be because oestrogen raises thyroid binding globulin, though I am not sure how this works in detail. The endocrine system is horribly complex and the various hormones affect each other, so at times of hormonal upheaval it can be very difficult to know just what is going on.
I also have many of the symptoms you describe (burning feet, easily disoriented, easily exhausted, very dry skin, tinnitus, constipation, poor memory) but all except the last two have only developed since perimenopause began so for me, these seem to be related to gynae hormone deficiency as I am now post-menopause and they have not improved. So, though I don't know where you are as regards menopause, it seems possible that your symptoms could be related to this, though you are right many of them do occur in hypothyroidism too. I think the bloating & puffiness could be down to either gynae hormone issues or thyroid.
I do wonder whether low B12 might account for some of your symptoms though - burning feet, exhaustion, constipation, poor memory, numbness, tinnitus, low mood and apathy, and wonder whether it might be worth asking for this to be checked if you haven't already. I'm so sorry I can't help more - you must be feeling pretty awful with this lot going on. I do hope you manage to get to the bottom of it.
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like Babyjane, I am long-term hypothyroid, on Thyroxine (T4) & Liothyronine (T3),
Wrensong I am also on T4/T3 combination treatment as I do not convert T4 to T3 properly. May I ask what dose you take out of curiosity? I would have sent you a PM but I am not sure if you can send them back yet. I take 100mcg thyroxine once a day and 5mcg Lio twice a day.
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Hello Babyjane, like you I am a poor converter ::). Had seen from your past posts that you & I had a lot in common & was often tempted to join so we could compare notes, as this can be a tricky condition to live with to say the least! At the moment I take 62.5/62.5/75 mcg T4 (ie 75 mcg 2 days out of three) with 2 x 5mcg T3 daily, but this has long been a work in progress. Last TFT results were in my lovely Endo's words "perfect", but still don't feel anything like as well as I need to & since then my HRT has changed, which has previously required adjustments to dosage. Won't say more here as don't want to hijack Chi Chi's thread, but please do PM me when this becomes possible (sorry, am an ignoramus about these things as this is my first forum) :).
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Sorry Babyjane that should read 62.5 mcg two days out of three ;D- this morning's T3 has obviously not yet made it to my brain!
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Stellajane, this is why it would be so useful for we hypothyroid patients to have known what our optimum TSH was before we developed thyroid disease, when of course, it is unlikely to have been tested! That said, I wonder whether the optimum level changes depending on our life stage or other circumstances. As it's said a healthy thyroid changes its output second by second according to the body's needs, there is really no replicating this with bulk daily doses of Thyroxine & if we need it Liothyronine, is there? The truest words ever said to me on the subject came from a Neurophysiologist: Thyroxine is a poor substitute for a healthy thyroid. Unfortunately many doctors have never been taught this & many patients struggle to become symptom-free thinking their failure to thrive, is really their failure. On the other hand, there are patients who do seem to do very well on Thyroxine, so I wouldn't wish to scare anyone just diagnosed - there is every chance they will be lucky with the treatment. I am eternally grateful for the development of the two synthetic hormones & we would all be in dire straits without them, but for some of us it can take years to realise & accept that there may be a limit to how close to optimal health these otherwise wonderful meds can bring us.
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Should perhaps have added that the endocrine system being so complex, the same probably applies to HRT - it may not be a cure-all for most of us, but if it improves our lives beyond what they can be without it, then that can only be a good thing. The difficulty comes in trying to ascertain when a medication is as good as it's going to get for us, so that we can make whatever other adjustments we need to our lives and get on with them without striving for a perfect fit we may never attain.
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Stellajane, glad to hear HRT has helped you. I wonder, given what you say about symptoms pre-HRT, whether you are hoping to stay on it for life. I avoided it for 10+ years (FH breast cancer) which were largely wasted due to severity of symptoms, but when my Endo encouraged me & my Gynae said "you are not your mother and you need to have a life" I realised that enough was enough. I agreed to start it on condition use could be indefinite, barring good reason otherwise, as I didn't think my body would stand a return to menopausal symptoms of that severity at an older age, if they recurred on withdrawal. So, having taken the plunge & got partial relief of symptoms, I'm glad I did and try not to think about how I would cope if obliged to stop HRT at some point in the future. Lovely GP was cautious, but understood & supported me, though after I had started HRT, said 5 years max - to my shock, having agreed term to be indefinite with Endo. Just recently diagnosed with mild osteopenia, and treatment for now is to be HRT (& Vit D), so think this may mean I will be permitted to stay on it longer term. Good to talk to another hypothyroid lady & hear your positive experience of the two types of medication. I hope you continue to do well on your regimen.
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I'm having a battle with what I think is a thyroid issue my doctor took tests last year only tsh and t4 my tsh ok but my t4 was very low she said results were normal though as tsh wasn't raised. Likes been said she wouldn't refer me to endo as there is no issue she said but 5 family members have thyroid and auto immune disorders and it took them 9 years of being ill to eventually be diagnosed. My problem is my symptoms match thyroid and peri so I don't know if to have private tests done for my thyroid first or try hrt and if that doesn't help go back to thyroid issue. My crippling issue that's wrecking my life is the inability to get to sleep til 4am every night for the last 3 years I don't think I'd last another 4 months. I have had a lump in my neck for 5 years that grown quite a lot and I'm waiting for a biopsy for lymphoma so I really need the sleep and other health issues dealing with as I'm not physically strong enough to fight anything right now or 4 hours sleep nightly..so thyroid or hrt??? God knows
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Blue horizon are a reputable online company for full thyroid panel
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Thanks thats the one I've found its £99 for thyroid and vit d too then £35 to get a nurse to take the bloods at hospital which is worth it to get the full screening..shocking the NHS don't do the full test but heh ho.I think I'm getting that test first then take it from there
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They do deals every so often, I got mine for £66 or something like that and my nurse I've struck up a rapport with did it for me for free
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shocking the NHS don't do the full test
they do but it is a postcode lottery. Mine is done for my consultant, but it really depends which consultant you are with and which primary care trust. If we travel a 40 mile round trip to get my bloods done at the hospital where I see my endo they do the full test for his clinic. However if I have my bloods done at the local hospital to be forwarded to his clinic the lab only do the TSH which means my appointment is then a waste of time for my consultant and a waste of time and petrol for myself going to the appointment as he doesn't have the full picture. I therefore do the 40 mile round trip and then again a week later for my appointment ::)
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I don't mind using my savings if it gets the proper tests I'm sick of being told my results are normal when there's so obviously is an issue . My ex sister in law is a retired nurse maybe she can take my sample ...
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There is also an option of doing it yourself, almost like a diabetes blood test where you squeeze blood but I think that's more tricky. You want a proper test first time instead of hearing back there wasn't enough blood
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I agree I don't want anything to go wrong so I'll get a nurse I think....I'm ordering test tomorrow so fingers crossed I'll find eliminate one issue at least or find that's the issue and not peri. I really hope it's not thyroid I know how long it took my cousins to get their balance correct level wise...
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Thanks for all the replies ladies,
Just a thought re blood tests, I use a service called citydoc, if you go on their website you can search for local chemists where they will do the tests for you, results usually come back in a couple of days (depending on what tests you have).
Re the B12 I thought the same thing and had some tests done
Red cell folate 239 nmol. Range 285.4 - 1474.7. Low
Active B12. 70 pmol. Range 25.1 - 165.0
HCT. 0.454. Range 0.33 - 0.45. Slightly high
MCHC. 315 g/l. Range 300 - 350
The Dr didn't think these were anything to worry about but Agreed there was no harm in trying B12 shots so I had 5 loading doses (all paid for privately)! He said that these would be enough to last me years? Stupidly I didn't re test afterwards ::)
I just don't know anymore ::) went to see private Dr yesterday to discuss things further but I'll prob start a new post about that.
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Hi Chi Chi, glad to know you managed to see someone yesterday & hope this may have thrown more light on the source of the problems so that you are nearer effective treatment. Out of touch with the forum as I'm away & out of routine at present, so have not yet seen the other thread you mentioned possibly starting. Anyway, do hope you manage to find some answers.
If thyroid/B12 do turn out to be implicated, please do push for treatment with adequate ongoing monitoring to ensure meds are at optimal doses for you.
With the NHS so overloaded & some GPs' lack of knowledge about thyroid problems, it can be all too easy for patients to slip through the net. I'm ex-NHS staff & passionate about the service, but have also felt obliged to seek private treatment in situations where it's been obvious I've needed more help than the overstretched NHS system can provide. No-one's fault and I'm lucky to have had the means to do this on occasion, I know.
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Thanks Wrensong, I am really lucky and thankful that we can afford to go private, just wish we didn't have to to find out what's wrong :-\
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I agree Chi Chi. It can be so frustrating, not to mention stressful, when a problem goes on for any length of time and you can't get the help or answers you need. I think that in complex cases where there's more than one condition going on, or a lot of history to get through, the extra consultation time the private sector usually allows, means the doctor is less likely to feel under pressure to hurry things along. Sadly, most GPs don't have the luxury of this sort of leeway, which is unsatisfactory for everyone concerned, to say the least. I'm lucky that my NHS GP is thorough and doesn't rush me, but I'm also glad that she feels she can say if I need to make another appointment as we are running out of time.
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Stellajane - thank you for that. Reassuring to know another hypothyroid patient feels the same way I do! :)