Hi, I’m 23 years old who been dealing with thyroid symptoms for about 4 years. For a past years I been stuck with unusual fatigue seeing doctors and getting no where.
Because of my family history I got a private blood test to see my thyroid levels. I used medichek Kit test last year and it showed that my antibodies ware high and my TSH 12.2mIU/L . I told my GP and they did the test again. It was around 8 , but needed repeat after 3 months it got closer to normal range to around 5. At that point my symptoms wasn’t getting better and my throat/neck would really hurt sometimes.
Despite the test being close to a normal range I managed to get ultrasound scan. It showed inflammation with some nodules ,but nothing serious.
So I was continuing taking test and they ware normalish.
Because I couldn’t deal with the fatigue and other symptoms I tried levothyrixin with no prescription. I been taking 50mg for a month and I did feel slightly better but no noticeable improvements nor side effects. I told my doctor and he of course didn’t like it as it’s making difficult and can’t help with the prescription. I did stop taking it so they could monitor and do something.
I was so desperate that after many years even if I wasn’t accepted for endocrinologist specialist, GP managed to make appointment with the ENT specialists.
ENT specialist ware the only one who actually didn’t said that was depression. He thinks that it make sense that is a thyroiditis and that my tsh ware fluctuating so I been having all the symptoms, but he also said that he thinks that is resolving but could become hypo.
I should have a blood test but because if shortage of blood tubes is not really possible to do soon. I don’t know if is worth having a thyroid home kit again.
Because for a few weeks , feels like my symptoms got worse and it’s really difficult to deal with or to do anything. Luckily I have some people that supports me ,becouse I wouldn’t be able to survive on my own.
At this situation is too difficult and being a burden it’s a horrible way of living. Therefore I’m considering taking levothyroxin again h. But I don’t know if is safe or worse not taking it . Should I wait when the blood test are available or see the private blood test kit first. I don’t think doctors will do anything unless TSH really bad.
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From a quick read of that ... you could (should) have been started on Levo BY THE GP when you'd had two over range TSH results 3 months apart. So even if they didn't accept you private test of 12 ish ... the 8 was definitely over range , so as long as the '5 ' was also over range , then according to current N.I.C.E NHS guidelines for diagnosing and treating hypothyroidism, the GP could (should) have started you on Levo at that point considering you had symptoms, (and raised thyroid antibodies ?)
Which antibodies were raised .. ?
TPOab (thyroid peroxidase antibodies) or TGab (thyroglobulin antibodies ) ?..
NHS accept raised TPOab as evidence for increased probability of you going on to become overtly hypothyroid eventually ,, so are more likely to treat at subclinical levels ( TSH 'over range but under 10 , with fT4 still in range.')
But they don't accept raised TGab as evidence for this, because TGab can have several other causes (i think )
Hi thank you for the respond, for the TPO the home kit showed high and for GP test I’m a bit unsure what happend with TPO but TGab high. The last test was below 5 but maybe because I stoped levothyroxin few mont before the test I don’t know if that could had the effect.
"last test was below 5 "... doesn't matter if it was below 5 .. what matters is if it was above the lab range used FOR THAT TEST .. it may be something like [0.4 -4.5 ] you will find the range after the result in brackets .... they vary depending on which type of machine is used.
See GP again and ask them why they are not following this advice in your case .. they should be .. this is guidance for NHS GP's.
" 1.5 Managing and monitoring subclinical hypothyroidism
Tests for people with confirmed subclinical hypothyroidism
Adults
1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.
Treating subclinical hypothyroidism
1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4Consider 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.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."
The problem with treating yourself , is that it then becomes impossible to get an official diagnosis and treatment without coming off Levo again, (sometimes for a very long time) before TSH rises high enough again to comply with their guidelines for starting treatment.
So once you start treating yourself .. you can end up having to 'DIY' forever, and that makes it difficult when you go to the GP for something else ,as they will then see you as 'self treating with thyroid hormones unnecessarily' .. and will have a tendency to blame any other problems on that without looking into them appropriately until you agree to stop Levo first.
Taking 50mcg for a month is just a start to treating hypothyroidism so not expected to make you feel much better at that point .. you would retest after 6 weeks minimum on that dose ,and then increase dose by 25mcg then retest after another (minimum)6 weeks etc / until TSH was near 1 and symptoms stayed improved for more than a few weeks at a time. So just because 50 mcg for 4 weeks didn't fix you totally/ or for very long , that doesn't mean the correct dose of levo wouldn't have worked.
The usual dose for most of us end up being somewhere between 75mcg and 150mcg , but some need more than that.
For a VERY rough guide to expected dose you can use 1.6mcg /Kg body weight.
It is very common to start on 50mcg .... feel 'nothing much' for a few days .... then a bit better for a few weeks ... then go back to feeling less good again .. this doesn't mean it didn't work .. it means your body has adjusted itself to accommodate the extra and it's time to increase dose a bit more.
Yes, I agree the fact if start Levo the doctors get very unhappy about and there is no way they be wanting to help then. But then my doctors they don’t really see the problem as they blame it on depression. Therfore I don’t know if is worth waiting and suffering or treat it myself.
Thank you for sharing the information about the effectiveness of levo and how it works as it’s helps to see the importance of having blood test follow up.
I think if it's now been a few months after to you stopped taking any levo , it's worth waiting for one more shot at the GP's blood tests . It does seem quite likely that for the '5' result . your TSH could have still been 'under the influence' of taking Levo , TSH can take a long while to come back up..... longer than it takes for 'added T4' to get out of the system.
So before you mess with your TSH by taking more Levo it seems worth seeing how high it is now.
Show GP the evidence of your high TPOab.
Ask them to test TPOab themselves to confirm.
And make sure they understand that the previous '5' may have been taken when TSH hadn't fully recovered from Levo use
Also point out that since you have previously had a '12' and an '8' and there are raised TPOab , they do need to monitor your bloods carefully as and when your symptoms worsen, because it is very likely that you will only get worse if left untreated.
Depression is well know symptom of hypothyroidism. so ask for the hypothyroidism to be treated first, before antidepressants are used as a sticking plaster.
Apply a little 'leverage' ... "i am so concerned about my symptoms that i am considering purchasing Levo and trying it again, as it did help a little last time' and i would like to see if a trail of the right dose would improve my symptoms .. i would prefer to do this with your guidance .. but .... "
You right, also my thyroid is inflamed with nodules I don’t know if that’s another prove that needs to be addressed to GP? The ENT has mentioned to GP that is a risk for getting hypo. I don’t think that thyroidits resolving by itself because it’s been 4+ And hasn’t improved
it think they say loads of the population have nodules that aren't necessarily a problem.. So 'nodules' probably wont get you anywhere without evidence they are getting in the way physically, or overproducing T4/3, ('hot' nodules).
But 'inflamed thyroid' might be more useful as ammunition .. i don't know anything useful about that though .. mine never did anything as interesting as 'get inflamed' .. or if it did no one caught it in the act.
Oh I see, thank you for giving the advices and this information, really helping to decide on what should I do and how to go about it . I will try to wait for GP when the blood test are available.
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
If you want to keep yourself going until your thyroid gives up the ghost and you actually get a proper diagnosis and treatment, then in the meantime I would suggest that you get your ferritin (iron stores), vitamin B12, folate, and vitamin D tested. If ferritin is low in range or below range then getting an iron panel would be helpful too.
If nutrient levels are optimal you will improve your tolerance of thyroid hormones when you do get them, as well as improving your conversion from T4 to T3.
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