hey guys .
so I was diagnosed with hashimotos 6 years ago Iv been on Lavo for this time.
But I’m feeling awful my heart is struggling also but my bloods all keep coming back as in good range. .
A lady said that may be but it may not be converting to t3 I don’t really understand it all. .
I’m thinking of seeing someone private as I’m not get anywere with nhs .
Any advice knowledge help . I’m in Nottingham so any good endocrinologist consultants near me that will help
Hello Nejy and welcome to the forum ;
If you care to share your thyroid blood test results and ranges we can talk you through the basics so you will be better informed and more able to advocate for yourself should you need to even need to see a specialist :
Thyroid UK - the charity who support this forum hold a list of patient recommended thyroid specialists and endos both NHS and Private so you might like to email for this information - and read further on the Thyroid uk website for all things thyroid.
so from what I understood a result came back as 1.8 I’m persuming t 4 result I haven’t had a full pallet of bloods done as he said I don’t need one as that result is right bang on but I swear something isn’t right my heart ❤️ beat is slow I’m depressed fatigued , weight gain hair falling out and now my thyroid is swollen
Well without the results and ranges everything is a guess -and a result of 1.80 is probably you TSH -
We need to see at the very least a TSH + Free T3 + Free T4 reading and range -
and ideally also need readings / ranges for - inflammation, thyroid antibodies + ferritin, folate, B12 and vitamin D :
and this is where we all start off and forum members talk us through the results when back and help us to advocate better for ourselves to get better thyroid health care.
Your body is with symptoms which sound very much like hypothyroidism but we do need to see a thyroid panel to rule in or out your thyroid - as should your doctor -
so what does your doctor put all these symptoms down to ?
If your doctor is unable to run these blood tests for you - there are Private companies who can and you will find the list on a page within the Thyroid uk website - thyroiduk.org
Do you recommend any private testing ? In a bit over whelmed witb the choices .
My gp has sent me to the consultant in the nhs who is a endocrinologist but he isn’t having any of it says I don’t need a panel done as my ths is just as he would want it to be. .
So I’m persuming the answer to me having any of these tests is a no
So I’m going to have to pay private to get this sorted .
Am I best paying for a private consultation or paying to have some tests done do you think
You already have a diagnosis of Hashimoto's - this is a thyroid Auto Immune disease that tends to cause ' swings ' in symptoms as it systematically attacks and destroys your thyroid and will leave you needing more thyroid hormone support as your thyroid becomes further disabled and unable to support you.
Many patients have gut and stomach issues and find they also need to first heal their gut and need to avoid certain foods such as - gluten, wheat, dairy -
but first get tested eating what you like - to see if any of these are causing you additional issues and once we have some answers you then adjust your diet if necessary.
What does your doctor say about all these symptoms and the fact your thyroid is now swollen ?
Can you see if more detailed blood tests were run for the endo appointment and share these on this forum ?
You might like to read around in more detail on Hashimoto's and many forum members follow the research and suggestions of Dr Izabella Wentz who writes as thyroidpharmacist.com
I suggest you get your own full thyroid panel run to include the vitamins and minerals -
and pop the results and ranges back up on the forum in a new post so we can help you better understand and support you through your health issues - and if you need to see a thyroid specialist we will advise you later.
I see you have been given the information regarding blood tests etc - and just remember day of the test - arrange a morning by 9 am blood test appointment - fast over night just taking in water and take your T4 for that day after the blood draw so having left around a 24 hour window from your last dose of T4 - Levothyroxine.
Is that one of the finger prick tests you can buy ? To get a full panel of bloods done ?
I think for the full thyroid panel it is a venous blood draw - first off - I recommend getting this full blood test:
Afterwards the finger prick home testing will probably be sufficient.
Where do I get this done I live in Nottingham
Iv looked on the web site advised and this one came up would this not be good enough
OK - I think it's better that you do the full blood test to include the antibodies, inflammation and the vitamins and minerals - but if you can't manage the full thyroid panel -
go for this blood test - which I think is a finger prick blood test and you do the blood test at home yourself and post in back to the company to do the analysis.
Do the blood test yourself and send back in the post on the same day and do this on a Monday or Tuesday so it gets back and the results back with you before the weekend.
Do not take your T4 on the morning of the finger prick test - just drink water o/night and do the test first thing and afterwards take your medicine.
When you have the results start a new question and you will be talked through what it all means.
he is doing an ultra sound on the swollen gland to check for any cancer . He thinks I may have thyroidits I keep getting quite sick and picking all viruses up this isn’t helping.
The only result I have is the ths 1.8 result that he shared .
I think If j want any more detailed tests I’ll have to pay private by the looks of things I tried to convince him all is not right but he js just kept saying that value there shows your body is receiving enough for the Thyroid to function .
I am at my whitts end at times
I do have issues stomach wise Iv had to cut out sugar as Pancreas’s was behaving badly .
Having sugar was making exhausted dizzy sick with a pain below the stomach . Thyroid issues use to give me seizures back in 2015 and I had this issue with sugar back then
I’m feeling like heart is an issue not all the time but I have bouts of problems cardiac wise they can’t quite catch
Right mess
These ' bouts of problems - cardiac wise ' are likely these ' swings ' in symptoms you will experience with Hashimoto's as it can present with transient hyper / hypo blood tests and symptoms which would to be putting extra strain on your heart -
Has a beta blocker been suggested when these cardiac issues occur so to off set the worst of the symptoms ?
No because they can’t find the problem with it . Iv had days when Iv gotten up the heart freezes I can’t breath then it jump starts itself and the rhythm is all over the place it only happens like twice a year .
Quite scary when it does but cardiologist says he’s wanting to wait till it gets worse so he can catch it .
Ok - so you've seen cardiology and it's not bad enough yet !!
Was a beta blocker suggested in the mean time ?
Nope nothing
I swear this will kill me before it’s done but I just can’t get anywere with it
Can you see another doctor - I can't think what else to suggest tonight - thinking on :
I think possibly seeing someone that is better versed in the situation not on nhs maybe my only hope .
I could also do with someone to come and speak to them with me they knows what they are talking about I’m only giving them symptoms they aren’t joining the dots at all but when I challange them I don’t know medically what I’m talking about
Good morning :
Do you have a family and / or someone who can go with you to appointments ?
I do but they are very much in the unknown as I am . I could do with someone that knows how to advocate for the issues I’m suffering as I always feel like I get fobbed off becusee I’m not medically I the know of exactly what all this is
Yes I understand - as will many on this forum and it's through reading on this forum you will be start to learn and absorb knowledge as your symptoms are similar to those of other people on this forum dealing with Hashimoto's.
We can explain the blood tests and advise what you need to do next but we do need a starting point and that is a full thyroid blood panel of a TSH, Free T3 + Free T4, thyroid antibodies, inflammation and ferritin, folate, B12 and vitamin D .
I’ll try and convince this doctor to do this . If I can’t how do I go about getting one done do yon know ?
You will probably need to pay for this yourself -
I use Medichecks and have a nurse home visit to draw my blood -
it's more expensive but the least stressful way of getting a blood test privately -
You then post the results and ranges in new post and you will be talked through your next best step back to better health.
I use Medichecks and there is 20% off at the moment and I order an Advanced Thyroid Function Test which is 10 biomarkers and costs £89 .00 + then you need to select finger prick home test, or venous blood draw and where and how :
Follow advice already given - blood should be taken early morning by 9.00 am - at the beginning of the week - ideally a Monday or a Tuesday -
stop taking any supplements you are testing several days before the blood draw so we measure what your body is holding and not that recently ingested -
stop anything containing biotin as that can interfere with blood test results,
fast overnight just taking in water and take your T4 after the blood draw so having left around a 24 hour window from last dose.
P.S. The recommended way to take T4 - Levothyroxine - is on an empty stomach, and you need to wait around an hour before you eat or drink anything other than water.
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Your result of 1.8 is likely your TSH. That means that you do have room for a dose increase but GPs can be very conservative with Levo as they fear giving us too much, so instead they dont give us enough.
You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
If GP has only done a TSH test then it would be good to see where your FT4 & Ft3 fall as well to make a proper assessment of what your treatment is doing for you. Unfortunately the NHS rarely offer all 3 tests so thousands of members in this group are forced to buy their own private tests to see the results to help them get well.
As thyroid patients we do need to become our own health advocates with GP’s and Endocrinologists. They get little training in how to make us feel well, instead relying on lab numbers on paper. Take some time to read up on your condition, learn and get your confidence up. This will stand you in good stead when discussing your condition and challenging things that medic say. Take printed medical papers with you evidencing what you are asking for, and also take someone along with you if you feel it would help.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Taking only T4 causes poisoning of the body if the liver is unable to convert it into T3, and it's normal to feel unwell in this case. T4 should be stopped, bearing in mind that it takes several weeks to eliminate it from the body. It's best to take small amounts of T3 every 3/4 hours and increase until the pulse and temperature are adequate. And take a mixture of T3 and T4 at bedtime to last through the night. Increase the T4 very slowly to see what you can tolerate. It always takes 15 days to test a dosage.
Personally, I've had a lot of symptoms of hypothyroidism for many years and it's got worse over the last few years until I've ended up in bed. No doctor ever told me what I was suffering from, which is why I lost confidence. I followed the famous online thyroidologist's tutorial to find the right dose of T3 and T4 and everything is fine now.
I’m finding it a challange to get the consultant to give me t3 he will t4 but not t3
Yes, I know. He doesn't want to give T3 because he knows that afterwards you become independent of doctors because you're back in good health. He wants to keep his client. That's why I order it online
how do you order it and know how much you need ?
You can order it in Mexico, the USA and Germany, and I've also found some in the UK. As for dosage, you can start with 1/4 of a T3 tablet, every 3 or 4 hours. 1/4 of a T3/T4 tablet at bedtime, for example, always with food. Monitor your temperature and pulse. Increase or decrease the dose until you find the right amount. The tests can last 3 months. To convert T4 into T3, you need sugar and selenium.
I can only see in the uk you need a prescription for t3 from endocrinologist and he said he wouldn’t .
So I’m not sure how I could try this . You can’t buy it here unless you have a prescription
How do you purchase it ?
We aren't allowed to name sources for medicines without a prescription in the group but you can send a personal message to someone.
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