I am hoping you can help me again please. I'm not sue the GP I'm seeing currently realises how sick I am because I find it hard to be assertive in the appointments with him. I am being referred to a neurologist which he said might be about 6 months. I have been looking through my hospital records myself to see if there is a pattern in my blood test results. At my last appointment with the GP he said he would only consider further Thyroid testing if my hair started falling out or I had a weight problem. I'm just wondering are these the 2 main symptoms. My hair isn't falling out and I don't have much of a weight problem.
I've found a blood test from 2007 where my Free T4 is very low. Could someone tell me if this is a reliable test please.
The results from that were:
Free T4 12 pmol/l [12-23]
TSH 1.60 mU/l [0.35 - 5.50]
I could post the full blood count if that would be helpful. At the moment I think my feet are the most worrying symptom I get pins and needles a lot. I find it hard to stand up for too long. I seem to be tripping when I walk sometimes. My memory and concentration are very bad too.
Could someone please help with advice on what to do. Sorry it's such a long post. Thanks.
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The symptoms you describe are more likely to be LOW B12 - where a result below 500 can present with neurological symptoms - pins and needles being one of many. Please scroll down in the link below and read about the symptoms .... also look at the videos under the heading FILMS which illustrate the seriousness of LOW B12.
Low B12 is also linked to brain shrinkage. Also have Folate - Ferritin and VitD tested when you test the B12. B12 works with folate in the body.
Are you taking any meds that could be affecting the uptake of your B12 ? - Metformin - PPI's ?
Yes your FT4 is low in the result above - and if the FT3 is also low - then it would be worth considering Central Hypothyroidism rather then Primary. Something Docs know very little about.
That's a very old test! Things could have changed a lot since then - is that the last test he did? Shame on him!
FT4 is a better test than TSH, for certain, because under certain circumstances, the TSH doesn't ever get high enough for a doctor to give a diagnosis. But, the most important test is the FT3. And, if they're both low, with that lowish TSH, then you would have a case for secondary hypo (primary hypo being where the Frees are low, and the TSH high). So, not only do you need to continue testing, but you need to test other things - including antibodies.
A lot of hypos do put on weight, but not all of them. Some hypos even lose weight! And a lot of hypos do lose their hair, but not all of them. The trouble with doctors is that they want everything cut and dried, set in stone, absolute. And, thyroid disease isn't like that.
So, could you get private tests, do you think? You can find some quite reasonably priced on the Thyroid UK main page. The tests you want are :
TSH
FT4
FT3
TPOab
TgAB
vit D
vit B12 (as Marz says, your foot problems do sound like low B12, which wouldn't be surprising if you are hypo.)
folate
ferritin
That would give you a much better idea of what is going on with you.
Thank you both very much for your replies. Marz I think I have low B12 too but this GP is going by my serum B12 that was done in early March this year. That result was 564ng/L [187.0 - 883.0}
My ferritin level was 5ug/l [10.0 - 204.0].
It was tested again in May and has dropped again it is now.
Ferritin 26ug/L [10.0 - 204.0].
Folate is 10.6 ug/L [3.1 - 20.5]
My b12 is high now because this GP did initially agree to treat the B12 deficiency going by what I told him. I had loading injections in April.
He has been testing the Thyroid too the result from May this year is:
TSH 1.76mu/L [0.35 - 4.94}
free T4 10.6pmol/L [9.0 - 19.0]
He told me at the last appointment he has to justify the costs of these tests and to come back about my Thyroid if my hair started falling out or my weight was a problem. It's just I feel really really ill and this GP doesn't seem to be listening. I wanted and urgent referral in March which he didn't do. He also said even if I get the Thyroid antibodies tested it is only a high risk factor.
I have an appointment with a nurse on Thursday.
I have never had the FT3 test done. Maybe I should get all the Thyroid tests done then. I will read the links above for the B12 deficiency Thank you for posting them.
Carmel, Marz won't know you've replied, because you haven't highlighted her. But, I've done it, now.
Yes, getting everything tested is a very good idea.
Your doctor is totally wrong about antibodies, it isn't just a risk factor. If your antibodies are over-range, you have Hashi's, and it doesn't matter how much he hums and haws, he can't change that. And, if you have Hashi's, things are going to get worse, it's not just a risk of getting worse. So, you need to know.
Thanks for replying. I'm not very good at using the forum yet I think. lol. Is there any test that might be the cheapest one for the Thyroid I could get done. Last time I was in with the GP he refused to do more Thyroid tests. I probably need a new GP too.
Shaws has given you a link, below, to the Thyroid UK site. In the menu on the left, just under the item highlighted in green, it says 'private testing'. If you click on that, you will find all the details of private testing, and prices.
You can tell your GP you've taken advice of the NHS Choices for information and advice about dysfunctions of the thyoid gland.
If FT4 and FT3 are low they should be towards the upper part of the range, not middle of bottom. Levothyroxine (T4) is inactive and has to convert to T3. T3 being the only Active thyroid hormone required in our receptor cells.
I shall give you a link to recommended labs and most are home pin-prick tests.
Thank you all so much for replying. I will read those links and look into the home testing. I went to a nurse's appointment yesterday because I am so worried about the pins and needles in my feet and have asked again for an urgent referral to hospital. I am being referred to Gynaecology and Neurology maybe I can convince them to do the Thyroid testing. The nurse said they have ruled out Thyroid now! Maybe the hospital will know more about it. Would just the T3 test on it's own be helpful?
Can you obtain copies of those test result that rule out the thyroid issue - it is your legal right to have a copy. Strange isn't it that they are happy to incur the cost of visits to Specialists and yet will not prescribe a B12 injection costing pence.
The FT3 test on its own is not suggested normally - as you need the FT4 done at the same time to see how you are converting. Your FT4 is currently low so am assuming the FT3 will be too. Sometimes it is not If the FT4 - FT3 and the TSH are low in range then Central Hypothyroidism should be considered - where there can be a Pituitary issue.
Above are the Guidelines for treating Folate and B12 Deficiency. As you have neurological symptoms the treatment is different and should be done more often until symptoms disappear.
Please read them and point them out to your GP - he obviously has NOT read them. We have to take care of ourselves and reading and being well informed is the only way - sadly .... At 71 I am still reading and learning - it's a must
The problem I am having is I think I have a b12 deficiency or PA but I am going by tests from 5 years ago when I was told on the phone that I was anaemic due to low B12. I obtained my hospital records but couldn't find the B12 test on them. That test result must be in the GP records somewhere but I'm not sure I should look for it now as this new GP may not go by that result. I have only been with this new practice since January and this new doctor has told me a few times now he doesn't think I have a B12 deficiency. I have asked for an urgent referral to hospital yesterday at the Nurse's appointment. I have now been locked out of my online system account because I put in the wrong password. I can hopefully post my FBC from May tomorrow. This GP just doesn't seem to be taking my symptoms seriously and I am getting very stressed with it all.
As I mentioned above the treatment for neurological symptoms is different - and pins and needles counts as just that. So your Doc should have read the Guidelines I posted for you - but from my reading on this forum and the PAS one not many do. So sadly it is up to us to read and take on board the relevant information and present it to the GP.
The above link takes you to all you need to know - well almost - about B12 Deficiency. Scroll down to the list of neurological symptoms and more .... Also within that website is a Specimen letter to help you to write to your GP about B12.
Click onto the heading Films on the Menu - and watch the videos to see just how serious B12D is.
Testing Homocysteine and MMA is also helpful in clarifying B12 deficiency at a cellular level - both are raised when B12 is low in the cells. The blood test is just that - it tells you what is in the blood and NOT what is in the cells where it is needed
Your ferritin levels are very low. You could try taking 210mg or Ferrous fumarate 2 or 3 times a day for a month or two, and see if you start to feel better. Low iron can make you feel pretty rubbish, and having a healthy (70 or over) level of Ferritin (stored iron) will help if you do end up taking thyroid medication. Once your ferritin level is good you can reduce the ferrous fumarate to one a day, or stop taking it if your doctor is willing to test one a year to see whether it has dropped again.
Have you tried going gluten free for a while? Many people find it helps, even if they aren't fully coeliac.
Thanks for your reply. This GP has prescribed me those tablets to take 3 per day which I have been taking since March. But my ferritin level still dropped back down again last month. I did have a Coeliac test which came back negative. I will try cutting out more gluten to see if it helps.
Hopefully this hospital referral will come through quickly and I can get my health sorted out. Thank you all so much for helping.
Both companies are regularly used by people on this site for private blood tests, and when you register with them you will get emails when they have special offers on, which is always useful.
Blue Horizon has a chat option on their website that allows you to get your questions on the process answered if necessary.
Both sets of tests can be done either as finger-prick tests or as vacutainer tests (a sample from a vein in the arm, like the NHS usually does). Be sure you know who will take blood for you if you order a vacutainer kit.
Tests are best done first thing in the morning - before 9am at the latest. Also, fast overnight, and don't eat or drink until after the blood draw. Water is the exception - you can, and should, drink water because dehydration alters blood test results and makes finger-prick testing difficult.
Do the blood draw Monday - Wednesday, and post the same day with Guaranteed next day delivery by 1pm. You want someone to be at the lab to process your blood sample, you don't want it sitting in the post office or in the lab for several days over the weekend.
Thank you so much too for your great reply. I will have a look at those links and decide what to do. It's just very frustrating that this GP doesn't seem to be taking my symptoms seriously. It doesn't help that I feel like I am half asleep when talking to him and have to write everything down before I speak to him. I am in the UK.
Because I am not working also I don't have a lot of money to spend on these tests but will sign up to the e-mails for special offers. I'm wondering if this GP would even treat me if I had high anti-bodies.
Would a Thyroid condition cause any tingling in the feet? Thank you all so much for your great replies I will start reading those links.
I will post the latest blood results tomorrow when I get access to the online system.
Well I've just had a phone call from the doctor's to say nothing I've said warrants an urgent referral. I'm wondering if they would even treat me if my Thyroid results are low seeing though they have ruled it out without even doing all the tests! I really need a better GP or are they all the same. Looks like I will have to do those tests myself.
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