I have just received these private blood tests which to me (and the nurse from the labs) show Hashimotos and hypothyroid but have shown them to my Doctor who says they show that I ‘might‘ be at risk in the future but don’t need treatment until my TSH is 10 and my T4 is lowered.
I feel absolutely crap no energy and have put on loads of weight. Please can someone take a look and let me know is she right or should I be receiving treatment. Should I ask to be referred to an Endocrinologist?
Can anyone recommended a specialist in Cambridgeshire, Bedfordshire, S Lincolnshire, Northamptonshire, Hertfordshire?
So grateful for any help I’m feeling desperate.
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HealthySam
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"Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and symptoms of hypothyroidism."
For full thyroid evaluation you need also to check vitamin levels.
Vit D
Folate
Ferritin
B12
If Doctor won't do them use a reliable online lab. Read Thyroid UK website for blood test information.
You're very unlikely to get a referral to an Endocrinologist with those results. Symptoms could be due to low vitamin levels which are very common with thyroid antibodies. Ask GP to test levels in 3 months time and do vitamins as listed above too. If TSH is still elevated above lab range, ask for a trial of levothyroxine as per NICE guidelines, (hopefully you're younger than 65).
Get vitamins tested and post on this forum for good advice even if doc says they're OK.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels ...Or test privately
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
The Doctor has asked me to go in for a blood test tomorrow (so probably doesn’t trust the private test) but it is at midday. If I fast and just drink water tomorrow morning would that give an accurate test or does the blood test have to be done early morning? I’ve just emailed the Dr to ask her to add the vitamin tests you recommended but if she doesn’t allow them will get them done myself. Thanks
“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”
“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”
TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.
Go for the blood tests and try to get vitamins done by GP who might also consider doing a full blood count. But bear in mind that TSH reduces during the course of the day. At this stage though, you might need to keep an open mind. If you've got coexisting conditions, inflamation or are taking medicines, these may all affect thyroid function. Some people have elevated thyroud antibodies but never progress to being hypothyroid so your GP is perhaps still trying to rule out other causes of elevated TSH and it might be a good thing to get a thorough checking over before deciding how to proceed. I understand its frustrating and you're feeling unwell in the meantime. Explain that to your GP and say you need their help to resolve symptoms as its impacting your life. Just see what their response is and then you'll know if you need to find another one.
I fasted from last night until the blood test at midday I only drank water. Do you know if that would have helped the TSH results to be more accurate or is it purely dependent on time of day?
Eating will lower TSH, so you did right. But i think it's got more to do with time of day. There is no definite here , every one would be different. Some folks TSH drops a lot in the day and in some it's only a small effect.
Yes I did the private one as soon as I woke up as luckily had heard about this before. I didn’t know about supplements also affecting the result though.
Biotin doesn't affect all tests , some machines use a method that is affected by biotin , and some do not. From what i'v e read so far, if a result is affected by biotin interference it will be 'extremely wrong' , rather than just a 'bit wrong'. I'm not certain this is fact but that's the impression i got. ( ie I wouldn't count 6 as 'extremely wrong' for TSH , whereas say 96 might be.)
So, let's see what your NHS one comes back as;
1)...If it is above range, then good, if you still have symptoms they should re test TSH after 3 months and if it's still over range but below 10, the guidelines say you could be offered a trial of Levo. (note ~could not should, sadly)
Or 2).... If it is within the Reference Range, ........(which would let them off the hook for the requirement to retest you after 3 months, and possibly allow them to suggest your private one is 'wrong') .......then you have the option of pointing out the error in timing , ....which the GP will probably not have ever heard of, and will probably insist makes no difference.
.....Or not bothering with trying to educate them and just make certain you only have blood tests done 'first thing' in future, even if that means waiting weeks for an appointment at the right time.
This all makes sense I will definitely choose an early NHS blood test appointment in the future but will probably get another private test with vitamins in 6-8 weeks I need to know what is going on as my mum is hypo and I have had the symptoms for quite some time but recently got much worse. Getting the bloods back Monday morning hopefully. Thanks for the help.
My results came back within range for TSH and I did mention the time of the test and yes the Dr said makes no difference but has agreed to redo the tests in 8 weeks. Next time I will get an early test and not take any supplements for a week. I’m a bit low on iron but not overly so have been told to take a supplement. Do you know about Potassium I took quarter of a teaspoon (cream of tartar) yesterday and it helped my headache and I feel much better today? First time in ages I haven’t had to sleep in the day. I already take Magnesium but this is the first time I’ve taken potassium.
Seems like Hashimoto’s to me and if I were you, Id demand T4 Levothyroxine hormone replacement now! Its only going to get worse... find a supportive and knowledgeable GP and do your research and reading before you visit your GP so you can challenge them where necessary. If your GP isn’t playing ball, move on to another. If no one in your practice is helpful, try an endocrinologist NHS or private.
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