Hello everyone i havent been here in a while, im still very much struggling, ill give a lil bit of history, i have suffered with anxiety/panic attacks, heat/cold tolerence, dizziness, vertigo, mood swings, depression etc etc, anyway i have a thyroid nodule and i had to have a biopsy which came back as benign i have to have regular check up just to see if it has grown or changed, anyway ive been telling my doctor of all my symptoms for many years, i was diagnosed with having general anxiety disorder and depression which im not convinced!
i have had many tsh tests which has came up in "normal ref ranges" althought it seems like over a year it has been getting higher, i finally found a doctor that listened to me on the nhs and i said how i was unhappy with them saying the tsh was the be all and end all test, anyway she took my blood and sent it off for tsh, ft3 and ft4 test......
tsh 1.73
ft3 5.0
ft4 11.0
These are in "so say normal ranges" although i later on found out the ft4 is still at provisional ranges which means temporary right?.
Anyway the doctor couldnt answer how she could say i was in normal ranges when its provisional, i have later been told that my ft4 level is in a low range from a lab im going to go to privately as there range for the ft4 starts at 12 :/ can anyone please advise?
Im so fed up with being told i have a mental health and im so desperate for answers.
i would appreciate any comments on how to tackle this, or the ranges.
thanks.....nichola x
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Someone will reply re the numbers on your blood tests. You are very lucky the free's were done as they aren't usually. Labs throughout the country have different ranges, so it is always beneficial if you get a print-out which gives them, or ask for the ranges. It takes time to learn all the 'bits and pieces' but it will become usual. The ranges make it easier for people to comment.
Many people have been diagnosed with mental health conditions because of the reliance on the TSH. These are some links on depression/thyroid.
We all have to learn more about the function of the thyroid gland and its hormones in order to recover our health. GP's have been told to keep us 'with their normal range' but we should aim for a TSH of 1 or below.
nichola, as the description of the range is "provisional" and this disturbs you, perhaps you could ring up the lab that did the test and ask to discuss the provisional range with a person fully qualified to answer your concerns.
Nichola, please take shaw's advice and supply all results you have, including from your private laboratory, and also give us all the ranges even if they have been described as "provisional", only then can anybody make informed comment.
You should have no difficulty in being given print outs of your blood tests as it is your right in law to be given these, just ask.
Make sure bloods are drawn as early in the day as possible as the TSH has a circadian rhythm which means that it is at its highest (good, aids diagnosis) in the mornings and declines later in the day.
Surmise on a couple of matters might be made from details you have supplied but without the ranges it would just be that - surmise, and not much good in specific relation to whatever might be going on for you.
Looking forward to your next post, meantime how about scouring the main site
Nicola, firstly dont worry about GPrefering to anxiety/ depression as I had that thrown at me even health anxiety lol not sure about your test results ( sorry) but you reults seem variable and on the rise and your smptoms are suggestive of either hypo or hyper. you benefit having a antibody test TPO and thyroglobulin.
thanks for the reply, ive also been diagnosed with health anxiety also lol i think they think im a screw short but i know im not, i did also notice that my tsh level is slowly rising, i have been told that if i was in a different area in the uk the ft3 range starts at 12 which makes me low, it drives me crazy!
im going to have the full advanced thyroid done privately, but it do worry me that even if it comes back out of range my doc wont listen because i think the lab i will be using privately is different to my areas ranges (which i got to admit seems silly), im almost certain i go from hyper-hypo though??
nichola, the doctors who describe us as having "health anxiety" are really those who do not have a clue what is going on so they just blame us by insulting us, I have had it too, like merissa. The correct response is: with a doctor like you, I am right to be anxious about my health - you aren't!
Don't be driven crazy by the fact that in a different area the FT3 range starts at 12, and so the claim is that would make you low, this is nonsense. What matters is where your result sits in the particular reference range used by the lab that did your testing. That is why we ask for reference ranges from your testing lab, as ranges can differ, but where your results fall within them will proportionately remain the same.
I hope you can follow up merissa's observations about antibody testing.
Further, in addition to the noted slowly climbing TSH, it seems still not to be reflecting the low level of FT4 compared to the level of the FT3, I am not a doctor but the disparity of the FT3 and FT4 levels positions in their ranges coupled with a TSH which surely should be higher to reflect the rather low FT4 might just indicate that there is a problem with the pituitary, or the "messages" sent to it by the hypothalamus. Referral to an endocrinologist would either confirm or eliminate this.
Your GP should be open to a request from you that you be referred to an endocrinologist, under whose care it might be thought you would still be anyway as you have had a thyroid nodule investigated. It is not enough for any particular result to be in range, each should be considered in relation to the others (bear in mind I am not a doctor) but many thyroid situations are not dealt with in a GPs training, whereas an endocrinologist would consider the whole picture.
Turning to your blood test results, the first three are all low, although in range they are not optimal.
Ferritin: should be around 90ug/L
Folate: " " " 10 or 12
B12 " " " 500, or higher.
Vit D not tested, but should be around 125-175nmol/L or 50-70ng/ml
With a folate as low as 4.9 and B12 at 245, it is likely that the B12 level is kept lowish by the folate deficit (in range- by 0.3!! Why is your GP not reacting to this?) as incoming B12 cannot be methylised (folate enables this). Unless folate levels are adequate (10-12 at least) B12 augmentation might be ineffective, but you can deal with this yourself by using Jarrows sub-lingual 5000mcg tablets from Amazon, but please also at same time supplement with folic acid, about 800 units, to boost folate and to partner the supplemental B12.
If you use a microwave then please stop! A microwave oven destroys B12, and also enzymes.
Im not sure why my doctor isnt doing nothing, all i have been told is no furthur action, i put trust is these doctors to sort me out and they just shrug me off, to be honest i thought as long as they was within the range whether top end or bottom i was fine?
both sisters has a b12 defiecency and i have told the doctor this also, she has said my results has came back no furthur action, how would i tackle this?
Also i see a endo every 6 months and all they do is a scan then a furthur 2 weeks later i get called in and they talk about it, all they have said is my thyroid nodule hasnt grown ive had 1 biopsy which turned out benign, i mentioned my symptoms and all they do is another tsh like my doctor was doing, so im not sure if i should show my results to my endo in may which is when i have to see her again, im definatly going to have the antibody test priivately!
so how do my thyroid levels look to you? i know your not a doctor but do anything jump out to you?
Also i suffer with palpatations and flutters i get tmj jaw pain and my bones ache and i get really bad pains x
Perhaps you need to do what I did - after struggling with low B12 symptoms but getting no help (167, range 180-800) when I eventually had the energy I listed all 30 or so symptoms, printed it out, and insisted this go on my file at GP, which was done. You could do this for all the symptoms you have, making no attempt to ascribe them to any particular condition, just listing them. Then there is a record on your file of all symptoms. Check them out on the main site, you might recognise some symptoms you just accept withut recognising them as symptoms. thyroiduk.org
I see every reason for also taking this symptom list to the endo and take your private test results along also, though her reaction to the private tests might be dismissive, but your symptom list should be treated with the courtesy of being read. Ask for an explanation of the antibody results, and why exactly is your TSH displaying a pattern of gradual increase, and also ask why your FT4 and FT3 results are virtually at opposite ends of their respective ranges? You might exercise your right to take a friend along for support: to you, just a friend, but to the endo, a potential witness.
Meantime get "Understanding Thyroid disorders" by Dr Anthony Toft, £5 chemists or Amazon, excellent little book. Dr Toft was past president of British Thyroid Association.
I really appreciate everything you are doing and would be very much grateful for any help thanks.
Im going to get that book and have a read!
Do my ft3 and ft4 stand out to youat all or do they look normal, i know they say im normal ranges but id rather hear from people that know different lol.
so i should write all my symptoms down and give them to the doctor and endo? wouldnt they think i was being paranoid? this is the problem i get they look at me like im text book so to say!
Yes, if I had those FT3 and FT4 results I would be asking for some explanation from either GP or endo. You are perfectly entitled to ask questions, and under NHS rules such questions are supposed to be answered and the matter puzzling you should be explained.
Some doctors do unfortunately look at us askance when a printed list of symptoms is given to them. Others actually ask the patient to keep a diary of what is going on. It is an ego minefield!
You could easily start verbally, then say you have this list as a memory jogger, or in the interests of accuracy, as you know you get flustered or stressed and might forget something important to the endo/doc's assessment. That way you massage the ego of the prickly ones, who nevertheless might be good medics, by blaming yourself for getting stressed. It always astonishes me that they have computers/records/make notes but we poor anxious sweating patients are supposed to have memories that work faultlessly at all times, even when we are ill.
Meantime check out the symptoms lists on Thyroid UK, here is a link to hypothyroidism symptoms, you might recognise symptoms you had never associated with the thyroid.
-that's one link, you'll find your way to symptoms.
Meanwhile if nobody will take any notice of your vanishing folate level - which they should, this ignoring of your low level is medical neglect - here are dietary sources to be going on with
Low levels of folate mean that much of B12 will be converted to forms of B12 called B12 analogues.These B12 analogues resemble B12 but they are not functional in the body, nor are they detected by modern methods of assessing B12. Folate levels have to be at normal, or above, for the replacement therapy of B12 to be effective.
Above is in Martyn Hooper's book, "Pernicious anaemia: the forgotten disease" around £10 from Amazon, Thyroid UK, or Pernicious Anaemia Society. Page 76, and his ref. is:
Sheppard K, Ryrie D.
Changes in serum levels of cobalamin and cobalamin analogues in folate deficiency.
Scandinavian Journal of Haematology 1980; 25: 401-406
Start eating chicken livers and also animal livers. etc., as a first self-help move. It will do no harm!
I'll post here again about raising B12 for you to consider following suit. But you really need attention to that folate level, your GP seems indifferent - have you considered changing your GP. perhaps?
thanks ago for all the input, ive checked the symptoms and ticked against them, some words i dont know what they are but for the vast majority i have ticked most of them!
Am i right that thyroid disease can go along side b12 and anemia?
Also i found a diff doctor in the same surgery that actually listened and went ahead and done my ft3 and ft4 and that how i got the results, maybe she hasnt looked up my august results for my full blood count, so im wondering if i should bring it up with her? i just dont know how to tackle to go back to it?
Any idea how i can bring it up since it was last october?
Also i seem to get symptoms from both hyper and hypo so im going to have my thyroid antibodies done privately cause im not seeing my endo untill may this year!
They only bring me back because i have a thyroid nodule!
Yes, nichola, I do have an idea how you can bring it up, it is easy: under the NHS rules you are entitled to have a copies of your blood tests, and copies of any letters between specialists and your GP. All you have to do is ask, do not be embarassed about asking, it is your right under law to have these given you when you ask. GPs know that, therefore you do not have to feel a flicker of embarassment at asking: it is your body, not the GP's, which is being dealt with. I think this info is somewhere in the Thyroid Uk site, but I'll quote my own case: I have copies of blood tests/specialists' letters going back to 1997, and I know others on this site have all of theirs too.
Just not a problem really, the only problem is in your thinking you should be tied in knots about it!
Let me untie that knot: if you feel a little diffident about asking in person, you might find it easier just to write to your GP asking for the relevant blood tests you want copies of, or simply say all copies of blood tests in, say, 2012, or whatever length of time is appropriate, also say in the letter you understand there might be a charge for this service, that you would be grateful for charge details (it should be about £10 max., might even be free. A full request for all your records can cost around £50, but you don't want that, really) and enclose a stamped adressed envelope for the copies to be mailed back to you plus any charge invoice. Writing to ask for them is actually easier for the GP as the copies can be produced in a spare moment or even delegated to admin. to save the GP time. Then in future it is easy to ask at the time of an appointment for a copy of a blood test and the GP just prints it out for you, there and then. If I forget to ask my GP just posts them to me.
Yes, thyroid problems can give rise toB12 deficiency as the hydrochloric acid is weakened in hypothyroidism so it cannot release the B12 from the animal protein which is our only source of B12. Not to worry! You will fix the B12 issue as I did, I was half dead with utter exhaustion plus a couple of dozen other symptoms of B12 deficiency and I have not one of them now.
It is going to be a long post as I have to explain things clearly so you do things right and know why. I just wish your GP would take notice of your rock-bottom folate or some other GP would.
I put these things in tabular form but you would not think so from the way it is here - just link each number set to the three headings to make sense of it. Chicken livers: B12, 16.6mg; Folate, 588mcg; Iron, 9mg.
Thanks again, the blood work i had done in august i have the prints on them, i know i keep on but im almost certain even tho my doc listens i think she might feel im crazy!
She has also passed the buck to ask for my antibodies to be checked by my endo, she told me when i go in may to ask them to do the thyroid antibodies and if they refuse she told me to ask why!
Also someone else has said if i got hashimotto that it will show up on my ultrascans i have had, (never heard that before)
How would i bring up that i feel my folate is low to her without her thinking im just obsessing over thing?
Im sorry for chucking loads of questions at you but you seem very knowledgable, also do my thyroid results show any possibilities?
I have also never heard of hashimoto's showing up on a scan, it takes a blood test to assess antibodies which indicate Hashimoto's conclusively.
This buck passing about you having to ask for an antibody test and the onus being put on you to ask why if you are refused is ridiculous! She should, as GP, be writing a letter to the endo with all her requirements in it, if she wants him/her to run one. You have enough stress as it is without the possibility of taking the flak meant for her. It is a new one to me that a patient has to do the GP's asking. Can you change your GP? At the practice I go to, in Scotland, patients can go to any doctor in the practice they feel like. I was unaware that a patient had to stick to any particular doctor. Check out your rights regarding this, just phone up and speak to the Practice Manager to clarify matters.
Your folate IS low, it is only 0.3 above the bottom of the range and this should be treated. Don't bother trying to say that you feel the folate is low, say that you require treatment for this level of folate, only 0.3 above the range bottom, so making a declaration it is low without saying you "feel it is low" which gives room for attack. If they still appear indifferent, you can write to the doctor and ask for his/her justification in writing for the lack of treatment for this low folate level as they must know the health consequences of low folate. Then you have written ammo.
If in England, you have the benefit of the PALS set-up, Patient Advocacy Liaison Service I think that stands for. I had to use it in England when my brother had had a stroke and was being inappropriately treated. A meeting was set up for that day, medics, me, PALS person, who worked wonders with her calm efficiency. How about checking these matters with this excellent service, probably you can start finding out its remit online.
Don't worry a bit about being thought obsessive or whatever, you pay their wages, these are not gods
Thanks again for your input i really appreciate all this, if i want to make myself well what do you recommend for the folate to take as a daily supliment?
nichola, I am trying to get time to set out everything that put me right re B12 and folate to help you but life keeps getting in the way but your folate levels can be vastly improved right now by:
1) using unsulphured blackstrap molasses every day, see:
3) Eat chicken livers as I advocated and other livers for both B12 and folate. see post above
4) Go on Amazon to the Health and Beauty section, type in searchbox:
methylfolate
Several types will come up, Solgar, expensive one, says take 2 tabs daily, has 400mcg per tab (or capsule, forget which) so two amounts to 800mcg daily, better not to exceed this 800mcg level for daily intake; but Jarrows, lot cheaper, says take one tab daily, but people on the Pernicious Anaemia website:
maintain that 800mcg daily is OK so take 2 if you choose Jarrows.
It is essential to get as folate via diet as well as via synthetic pills of methylfolate so hit the unsulphured black molasses and liver, especially the chicken liver, hard. It is cheap, versatile and good for us.
It is only about £29 to get B12 and folate levels checked (not £29 each, both together) at myrios.co.uk. so you can monitor progress after about six weeks.
Hope you have connected with the many posts I have made on the link in my post about fourth from the bottom here.
But you must also take B12 simultaneously so buy Swansons or Jarrows 5000mcg tablets from Amazon Health and Beauty section and start following what I did in my many posts found on that link.
thank-you, it all seems to much to take in (soz a very foggy brain today) isnt there a vitimin i can take with it all in to make it easier lol.
just finished my glucose tolerance test feeling a little ill to be honest now, very anxious, so may have to come back for the intake on this as i feel a lil off!
I really appreciate you helping me, i really need to get to the point where im not feeling weak and off key!
nichola, I am so sorry you are feeling ill, my sympathies to you.
I did the long post re B12 raising and put it as a reply to another suffering soul. I hope my experience helps you both. Please ask me any questions you might have.
The post you need is the eleventh one down, very long one. If you need a boiled down digest of it I can do one for you, minus the "scientific" bits. Going to look at my link again, it is odd.
Hi, nichola, not sure I understand what you mean by "what can I put that in with" have I got it when i now say blackstrap molasses goes well on cereals; bananas sliced, molasses poured over; eat in place of jams etc., which are full of anti-health corn syrup anyway. Definitely would not buy the capsules as the amount per capsule will be nothing like what you can get even in one teaspoon of real molasses.
LOL i NO YOUR NOT. if you feel you go hyper to hypo please have the antibody test, this will confirm Hashimotos. Atoimmune D. I was like you still am, the gp thinks im bonkers, private endo dont think so.
mmm if your out of the uk range doc has to listen, but hold fire because it probably will be in the normal uk parameters, its pants. However have the test and include the antibodies and post on here, then someone will give you a clear direction.
get your evidence and knowledge, as they say knowledge is power.
good luck, post back if you need futher assistance.xx
Also it winds me up the free t4 is at provisional which is temporary so how can they just try and make out everything is ok when its a temporary range?
Hi Nichola
Just a pointer, if you want to reply to someone in particular, you have to make sure to click on 'reply to this' otherwise they will not get an email letting them know that you have responded.
It may also be worth posting the last two points as a new Q - sometimes comments can get missed.
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